Ask the POTS Expert
Postural Orthostatic Tachycardia Syndrome is an autonomic disorder that is still not understood by the majority of physicians. It is a condition in which the body does not respond appropriately to changes in position. Therefore patients get used to episodes of tachycardia, or having their heart race, particularly when going from a lying down or sitting position to a standing one. Because the heart beats too fast during these positional changes it may leave patients feeling exhausted. The brain may not receive adequate oxygenation during these episodes and it can be difficult to perform normal activities of daily living. 
Because most physicians are not looking for the symptoms of an autonomic dysfunction and even if the symptoms are uncovered, many physicians don’t know how to treat it, the disorder can be very stressful for both patient and family. This leaves many patients searching for answers. Often patients may be told by numerous physicians for years that they are “fine” or that it is all in their head. Some patients may find themselves waiting for years for an accurate diagnosis. There are a few “experts” in treating POTS but these physicians or the medical centers where they practice are located in various parts of the country, thus often times requiring patients to travel to be treated appropriately.
One well known POTS expert is Dr. Blair Grubb, whose article about Postural Orthostatic Tachycardia Syndrome is featured here. And, because I’ve been blessed to have met some of the greatest and bravest groups of patients ever, during our conversations on our POTS Discussion Group, Things That Helped Us Get Better, we have one of the members in our support group who now has a chance to visit Dr. Grubb’s office for an evaluation. Since many of us would like to be able to be seen by Dr. Grubb, we thought we’d ask our very generous support group member if she’d make a list of some questions that we’d like to know if we had a chance to see Dr. Grubb personally. We know she can’t ask all of our questions, but if you or a family member has POTS and you’d like to have your chance to “ask the POTS Expert” a question, please join the discussion below and ask the question you most would like to know about POTS, how to diagnose it best, how to treat it, or any other question you have about autonomic disorders that you’d like to know.
Now’s your chance so we hope you’ll join our discussion about POTS and ask your most pressing questions. What would you most like to ask Dr. Grubb if you met with him about POTS?
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Has anyone else developed pots during pregnancy? If so has your gone away after delivery? My son is now 13 months and I feel as though my health is on the decline with symptoms becoming more sever and frequent.
Holly, I agree with you totally. Spent years going from doctor to doctor and all said I was “fine”.
Could hardly function. It was awful, especially since the dizziness and fatigue kept increasing
and standing up was almost impossible.
Thank goodness I found my naturopath. I did my labs prior to seeing her through
http://www.orderyourownlabtests.com/
I’m on my way to visit my mom right now so not at home, but the lab testing place that I used even had a nurse you could talk to who helped me with ordering the labs that I needed. And the lady I talked to was great. Her daughter has POTS so she is well aware of all the things we go through. I can’t remember her name off hand but I did write it down if anyone needs it.
The online lab testing place can also do the adrenal panel order for you and send you the kit, but I first checked out thyroid, Free T3, Free T4, all the antibodies, some other hormones, and cortisol I think. Oh and Vitamin D and B12. Very important with the fatigue and all the funny stuff we get with tingling, numbness etc. After my Vit D and B12 were fixed I even had the energy to wash the dog again. Something I hadn’t been able to do in years. If anyone wants the list of what I tested, I can get my list when I get home if anyone wants it.
So important to get your own labs I think and then just take them to someone who can help you.
Hang in there everyone…once you start getting answers things can get better.
I was rear-ended at high speeds two months ago. I suffered a concussion and cervical sprain. Since then, I continue to have neck pain and weakness/tingling/pins and needles in may arms and face. I am a POTS patient and have had the disorder for almost three years and it is managed fairly well with medication. However, since the accident, the medication doesn’t seem to be as effective as I am dizzy and have a racing heart alot. My question is this, could having POTS be making my cervical sprain condition worse or could the cervical sprain be making my POTS worse? I am seeing a Neurosurgeon, but he has seem to given up on finding a reason for these continued symptoms and i am becoming increasingly concerned about the feelings in my arms and face.
Would in-home oxygen help during POTS related episodes? Today I’m short of breath and my vision is very blurry with tunnel vision. I also have Chiari I (post decompression) and EDS.
Thank you!
Since elementary school, I’ve noticed this very odd thing happening to my legs. In warm/hot weather, whether standing or sitting, (but a lot worse standing), my feet become beet red, slightly swollen, and red patchy rashes develop all the way up to my bum. Its underneath the surface (not rising like poison ivy or any other kind of rash), and my skin feels very warm to the touch. Ive been dealing with this my whole life pretty much, I cant wear shorts out on a hot day because 1: my rash will be a horrific site to people and 2: after a while, if I dont sit down in a cool place, it will start to sting and become uncomfortable. I dont get dizzy or pass out, but it is very odd and visually disturbing/unattractive. But I noticed after a long swim in the ocean or pool, the symptoms may (or may not) temporarily go away, but no more than 12 hrs. I have photos I can send thru email, I have seen multiple doctors over the years and no one seems to know. I exercise 6 days a week, and am in better shape than most people my age (20 years old). So exercise does not help at all, Ive found this out by now. May this be POTS?
I am a 50 year old male who was a triathlete. In December of 2012, I had the flu and then a couple of weeks later ended up in the hospital with a rapid heart rate. I made another trip to the hospital two months later because I was passing out. After many test including blood work during a tilt test, I was diagnosed with hyperadrenergic postural tachycardia syndrome. I have all the normal symptoms. I am trying to exercise 30 minutes a day and taking 12-25 mg of Toprol per day. Should I be doing or taking anything else?
I have been A POTS patient since the 1990s. I suggest u only stay with what the doctor gives u , he may change your meds several times to get it completely right.Make sure to keep hydrated very well.
Thank you so much for this opportunity!!!!
I was diagnosed in 2006. at age 39 with a positive tilt table test for POTS.I still cannot stand more than 15 minutes at a time and that is with exercise! The doctors still have not found a cause. I have seen many cardiologists and doctors.Blood test all come back normal except my Vit D and Cortisol are low. I am on midodrine, venelaxfine, and melcoxicam (for pain of osteo) It helps a little. None of the doctors seem to know what Type of POTS I have. One cardiologist suggested it was genetic. He claims that the nerves around my heart are causing it. I have sinus tarch. and some baryc.I have several trival mitral values and heart mummer, but nothing that requires a pace maker or concerns the cardiologist. I have tried florinef and beta blockers with no success. I drink plenty of fluids. My hubby makes a salt and sugar drink that has literally saved me I am constantly dealing with heart palps. and fatigue and all the POTS symptoms. What can I do to help myself? And how can I get a doctor to tell me what type of POTS I have? I can’t get any doctors to take more test to find out. They just tell me the same things to do and never really find the cause. I really believe if I knew the cause I would be better. I want to thank you so much. This is the first time I have asked for help. If you could consider me I would be sooo grateful.
One more thing I forgot to mention. Allergy season is back, and my daughter is wondering what kinds of medicines a POTS patient can take (taking into consideration the meds she’s already on–again, Metoprolol, Florinef, Prilosec, Mestinon, and Potassium Chloride).
Thanks, again.
I am a potts patient. I was diagnosed in the 1990s when hardly anyone knew about but Dr. Grubb, I have found the only thing safe for me is Benadryl allergy. It does not raise my heart rate or lower my blood pressure. I know Dr. Grubb will only allow me to use that. Always ask
ur Dr. because I dont know much about your meds.
My daughter (22 years old) was diagnosed with POTS in July 2012. At the time, she was almost totally bed-ridden, crawling across the floor to get to the restroom. She was in college as a graduate assistant, working her way through school, and we thought she was going to have to give up that position. After the tilt table test confirmed POTS, the diagnosing doctor put her on medicines–Metoprolol, Florinef, Mestinon, Prilosec, and Potassium Chloride–and referred her to neurology. By God’s grace, the medicines masked the symptoms enough to allow her to return work and take a minimum school load. She must use a motorized scooter, and she must plan very carefully–scheduling rest times during more demanding days, and eating small amounts, all day long. The neurologist has worked with us and is maintaining the medicines, for which we are very thankful. However, the neurologist is admittedly very baffled by the whole POTS issue. She is not seeing the condition as being an ongoing, even progressive condition (new symptoms keep cropping up), but rather sees it as an “event” that happened in the past (she thinks it was caused by a virus), and cannot understand why my daughter is still in a wheelchair. She thinks that the effects of whatever “happened” should be letting up by now. My daughter can walk short distances, but then will “pay” for it substantially by having her energy totally depleted for the day and being thrown into a “spell” of shaking. Again, the neurologist admits that she is puzzled, and is very much willing to try whatever we ask of her. For instance, she ordered lab tests when symptoms indicated that my daughter could possibly have an electrolyte imbalance. Is it possible for you to work with her doctor and give her ideas about possible treatment for my daughter?
Also, my daughter is starting to experience problems with her wisdom teeth starting to come in. She is wondering what effects anesthesia would have on her if she should need to have her wisdom teeth removed.
Thank you for your help.
My 14 year old daughter was diagnosed with POTS almost a year ago. Shortly before she was diagnosed we had to hospitalize her in a psychiatric facility because she said she wanted to kill herself. She has been hospitalized 3 times in the past year. We have been doing everything we can to keep her alive. I am now wondering after reading these posts if her depression is related to her POTS. Her POTS symptoms have been relatively mild- she has only passed out once- but she does take a lot of medication (midodrine and clonidine) throughout the day. I would be interested in finding out the corrolation between POTS and severe depression.
I totally understand your daughters thoughts and yes there is a connection between the two. I also have had to be treated for depression and anxiety. I was diagnosed many years ago and it took then awhile to figure out the connection. She should tell her cardiologist exactly what is happening and they should be able to treat both as part of her therapy regimine. I felt like I was gonna die so I might as well do it myself and it is very hard to get friends and family to understand how awful u feel. They can look at u like your crazy or just a whiner trying to get attention, but it is real. Let her know she is not crazy it is real and b supportive.
My daughter is 13 and was diagnosed with POTS at Christmas. I am a nurse and we went through a ton of tests before we found out diagnosis. She was feeling depressed and anxious, we had her go to a counsler. Our cardiologist says this is one of the symptoms. Since starting Florinef and salt tablets twice a day I have seen a big difference. She struggled with extreme fatigue, dizziness, confusion, headaches and depression. It is VERY overwhelming as a parent to see your child go through this. One thing I have noticed is that she is very sensitive to the heat. Have you noticed this as well with your daughter. Blessings to you and your daughter during this journey
My now 16 year old daughter struggled getting a diagnosis for 1.5 years. Finally, she was diagnosed with POTS, Fibromyalgia, and costochondritis. She also suffers from severe asthma… She had great problems with anxiety/depression with all of the problems going on with her medically. We were lucky at the onset her neurologist suggested she see a psychiatrist because she would need support for such a debilitating disease. and to help her cope with the overwhelming loss of a regular life. She was having great difficulty, however with therapy medication, for both POTS and her anxiety we were able to get everything under control. She is now finally living as a typical teenager. Her fatigue is still astounding sometimes but at least now we know how to manage it. There is hope. Good luck to you.
Hi My name is Jessie,
I am currently 19 years old and have been struggling with medical problems for as long as I could remember. I have visited several different heart specialists, all who told me that I was either fine, or out of shape (disregarding that i’m 141 pounds and in shape). I have been studied for a 48 hours trial with a holter monitor to no avail, or discovery of what was wrong with me (although my pulse was recorded to be at 176 at one point). Within the last two months I was administered to PMC hospital in PA for waking up in the morning with a rapid heart beat, trouble breathing, and ultimately fainting. I was administered with a pulse of 140 which stayed constant throughout my stay of 3 days in the hospital and have undergone a cat scan, a sonogram of my heart, a stress test performed on a tilt table, and numerous amounts of blood work. Also throughout my stay i felt as if there was a rather large blockage in my lungs which prevented me from breathing normally, although my oxygen intake level was at 98%; which left the doctors to provide oxygen to stop my shallow breathing. Throughout all the tests I was told that my heart was in a regular sinus rhythm, except they weren’t sure why my heart was so fast, so they prescribed metoprolol to decrease my pulse. Which affects my already low blood pressure.
Symptoms I have experienced in the past including: varying temperature, rapid heart beat (most days I can feel, and it’s strange but hear my pulse in numerous parts of my body), severe muscle spasms, stomach aches (feels like cramping, not from pms), constriction of muscles,almost like cringing, especially in hands and feet, and a lump that forms in my throat making it difficult to breathe.
I have spoke to a mother who has a daughter who was diagnosed with POTS and I feel a lot of what led to her diagnosis is similar to mine.
I’m not even twenty and already the majority of my time is spent in the doctors offices with no answers, and taking medicine that just regulates my muscles and heart. I would like to know what is wrong with me.
any feedback is appreciated; emails, doctors, suggestions, even a place where I can possibly get diagnosed would be amazing.
Thank you,
Jessie
Well, many things could be the cause. To begin, through my own research and not relying on doctors, I’ve discovered to test for adrenals (which can cause tachycardia…), you need to check the free cortisol through saliva test done 6 times throughout 24 hr period (and add DHEA saliva check at the same time), then for thyroid, check you tsh, free t4, free T3, reverse T3, TPO antibodies, etc…. Then, take these results to a highly recommended naturopath or functional health practitioner that uses these accurately diagnostic tests. You can be tested ’til the cows come home; but, if you’re not given tests that truly reveal anything, you will be left frustrated and no closer to the truth. YOU NEED TO READ AND RESEARCH, ENTERING SYMPTOMS AND TEST RESULTS INTO GOOGLE IN DIFFERENT WAYS, TO LEARN AND DISCOVER POSSIBLE DIAGNOSIS. Something else you could check is Alpha 1 Anti-Trypsin Deficiency (free test by a southern university), if after reading it, it partly fits. REMEMBER, YOU MAY HAVE MULTIPLE THINGS!
Hi i have been two hopitals this week. In the first on they a dr told me it had it. But no one there know about it .So I had a hard time did not get the informtion be cause now one every heard about it.I was told to eat sailt a take the pills. I did then had more trouble the next day when i went home . Went to a nother hospital and they said they did not belive in it . I have high blood pressure .So all the sailts where not good for my heart. The Dr that told me to take the sailt new about my high blood pressure. So i dont know who to trust with it. The one who told me was a heart dr. I need some one who knows more and can help me. What type of dr do i see to get the right help.I am still in the hospital.Who dose not think it is a dease. I am looking for help in NC.Hope I find one soon.
Rule out hyperaldosteronism as a cause of high blood pressure. Something that can help blood pressure, electrolyte balance is potassium chloride, but check with a professional for amounts.
Dear Dr. Grubb,
I was an athlete but became disabled in 2006. Mitral Valve prolapse repair, 3 post surgery strokes & unstained VTAC. I am 100% SSDI. I have a lovely CV as follows… ME/CFS, PSV Tachycardia, Myofacial Pain Syndrome, POTS, Immunodeficiency NK T- Cell Dysfunction, Retrobulbar ON, Stromal keratitis, Uhthoff positive (MS negative), HHV-4, 6 & Coxsackie viruses.
My POTS has been under wraps and o.k. Mid 2011 my SVT has been growing. In the past 6 months the SVT attacks are more frequent and longer, with them lasting as long as 70 minutes at 195. I am scheduled for ablation surgery the 1st of April but the episodes are numerous times a week now, 3 to 6. The Dr.s here in Italy added 3 grams of liquid magnesium to try to hold me over for the surgery. I am drinking tomato juice a lot to to get more potassium and salt. I am in good ranges on most of my vitamins as I have to supplement with prescription vitamins due to deficiencies, so it’s not B12 injections, prescription D and Folic acid..
I live in a hilly umbrian village. I have no car, am 51 and a mother of a 12 year old. I am trying to hold on to my independence…
In the past few weeks my POTS seems to be getting worse. I can not walk very far, I can not push my vacuum, I am out of breathe… I noticed the my blood pressure during the SVT are only 10 points difference, for example: 179 bpm with 92/82, or 175 bpm with 89/82, or 178 bpm with 82/78. I believe this may be called narrow or low pulse pressure.
I was hospitalized for the 3rd time in 6 months. I was checked from head to toe late January to early February for the last 12 day hospital stay. I am sure it is not held there long but seems to happen with the SVT. Could the SVT be provoking my POTS? Can my POTS get better after the ablation surgery? What can you tell me about my possible crystal ball future? Can I get POTS under control? Will it pass after the abation? THANK YOU SO MUCH!!!! Francesca Owens
My daughter was diagnosed a year ago with Pots syndrome. She has always had stomach pain, nausea immediately after eating, dizzy spells and almost fainted in my arms one morning. Now one year later she is experiencing “forgetting” things. Not silly teen things, but forgetting what stroke she is doing in the middle of swim practice while actually swimming. It is scaring me. Our doctor had her increase salt intake in her diet and liquids. At this point do I locate a specialist? It seems like Internal medicine doctors do not know very much about the disease.
I’ve read exercise changes everything, but my daughter is on a swim team with 1 1/2- 2 hours of practice 4 days a week with swim meets. So when I read that exercise is a cure it truly is hard for me to believe that.
What now? Where do we go. She turns 13 this week and can’t remember where she put her backpack 20 minutes ago. We are in Akron OH if anyone can recommend a specialist please.
Thanks for reading and hopefully some help.
I am so sorry to hear about your daughter. It must be very
Hard for you to watch your child go through something
Like that! Dr Blair Grubb is a renowned specialist in
Postural tachycardia syndrome. He is a great physician
That has not forgotten about compassion and sympathy.
He does although have a very long waiting list. His nurse
Practitioner Bev is extremely knowledgeable and is excellent
As well. I know sometimes it is discouraging to feel that
You are unable to see the physician but i assure you, she
Is worth it! She also can talk with him if she feels like the
Patient needs to be seen by him. My recommendation to you
is that you make an appointment with their office. If you feel
As though you cannot wait that long then their are other
Physicians in the area that are successfully treating patients with POTS.
There is a link on this site to physicians that may be able to
Help you and your daughter. Please do your research and
Ask the advice of other POTS pts who they recommend. Ultimately
it is your decision and I’m sure you will do whatever is best for
Your daughter. Good luck to you and I hope you find the answers
You are looking for.
sorry to hear about your daughter mine is 22 and has a 2 year old, it is very hard took us 15 years to get our dignosess my daughter forgets things and now is having kidney problems i believe from the extra salt, very bad chest pains. everyone has told me to see dr, grubb in toledo but there is a year or more waiting list but please give it a try. good luck i know as a mom its not easy
They figured out she has POTS, which is not to say she doesn’t have something else, or that her POTS is secondary POTS. Check out her adrenals, thyroid, pituitary…, by having her do a saliva test of free cortisol and DHEA, tsh, free T4, free T3, reverse T3, TPO antibodies, Renin and aldosterone serum levels, ferritin level, gluten or food allergies/sensitivities, blood sugars…. Start with these tests, Thyroid first thing in the morning having had no food or drink for 10 hrs and day of saliva adrenal test relaxing with low carbs, no exercise, no stress…. You can order these blood and saliva tests online, without having to chase your tail with the docs
I too have Pots and i am one of the fortunate ones to see
dr grubb. I had been from doctor to doctor and when i went
to see him he was the first dr to tell me i was a classic case
Of pots
He was the first doc to make me feel normal and not like
Some alien. He sat and talked with me and took his time.
He explained everything to me in terms that i could
understand. He fixed me and continued to see me
and he helped me get my life back. I know he has a long
Wait but i encourage all of you to make the appointment
Anyways. U can go see any other doctors you want in the meantime
But at least make the appointment because he is well worth
The wait. I would trust the life of my child with him and i hope for your sakes
You trust your life with him too because he will be your miracle worker
I haven’t been online too much recently. Been feeling better….I’m so blessed, but miss everyone here and wanted to come by and see how everyone else is doing. Lee Ann, welcome to the group. It’s such a tough diagnosis to get. I know my entire family was floored to find out that there was a reason for all my problems that I was having. I think the part leading up to my diagnosis was the most difficult. Do you know if you’ve had your iron and B12 levels checked? I had a great deal of neuropathy and trouble with flushing out of the blue but I had lots of things that were not within a good range. And it took me several doctors before finding one that figured out that the “normal” ranges for certain things aren’t good for all of us. I was very low on Vitamin D3, B12, iron, and some other things, potassium was also low end, and when I got some help in addressing those issues, my symptoms got much better. Has anyone done a thorough job testing your thyroid? There is a lady here who lists out the tests..I don’t have them in front of me now but I know tons of us who have thyroid issues too. Mine was undiagnosed for years because all anyone every looked at was the TSH. And I went to a major university hospital for help and got treated like there was nothing wrong with me. I was almost in tears after that visit, but luckily I found another doctor soon after who finally started putting the pieces together. If you know what exactly has been tested and post your numbers there are tons of folks here who are very knowledgeable about labs and who may be able to help give you some more assistance.
First time to post anything (on any website forum)… I’m 32 year old female. Recently diagnosed with moderate dysautonomia/POTS.
Have had a multitude of symptoms for about 3 years. Almost all of the symptoms have worsened over time but by far and away the most difficult symptom is lushing. I feel super sensitive to temperature changes, have zero heat tolerance, and would actually consider 70 decrees a furnace. The flushing is on my face, chest, and arms. Intense heat/burning pain associated with the flushing. Have also developed Raynauds’ and livedo reticularis, which both continue to worsen.
Does anyone know of any medications to help with the flushing? I tried Benadryl 25mg four times a day and clonidine. Neither seemed to have any effect. Inderal and Midodrine help minimally.
As a side note, I work in the medical field at a major teaching hospital and am seeing the dysautonomia specialists there. They were so impressed with the photos I took of my flushing, Raynauds, and livedo they asked me to email the pictures to them so they could use it in their Grand Rounds they are giving on dysautonomia.
I have a daughter who was diagnosed with POTS 3 years ago after more than 15 years of testing and telling us it was all in her head. right after she was diagnosed she found out she was pregnant. Subsequently, her POTS has gotten worse since the birth and now we believe her kidneys are shutting down. She also has a lot of fatigue, stomach problems, very bad neck and chest pain. We have been trying to get in with Dr. Grubb but I dont think we can wait a year. Please can someone HELP us she is a single mom and her daughter needs her.
Also have a son that has had symptoms for years but didn’t know about this until he has no insurance. When he did have insurance he had an ablation done for wpw but now has no insurance and his symptoms are worse. I believe he also has POTS but no one will see him with no insurance. Does any one know where he can go for help in Ohio? PLEASE HELP this is very hard on everyone, and I’m not getting any younger. My husband and some other family members believe they are just milking it and I know differently.
I am being seen by a Cleveland Clinic Doctor diagnosed me in 2 visits!! I have been trying to figure this out for almost 9 years (I am 25) and NEVER was POTS brought up. I started with the Cleveland Clinic about 5 months ago & had a resolution after seeing only a couple doctors. Now, I was just diagnosed so I do not know if how he treats it will work however the Cleveland Clinic has been amazing. The fact alone that they were educated about this when so many have no idea what it is makes me feel better already. What type of doctor has she already seen for it? Or what have they done…? My doctor currently stated that the doctors at the Syncope in Cleveland Clinic are one of the best around for syncope disorders second to a group in either Cincinatti or Columbus.. I could find out for you if that’s closer.. Cleveland Clinic will see low-income without medical… There is another place in the Brooklyn area, that see patients without insurance but I do not know that they have any knowledge of POTS. They may be at least able to provide a recommendation. They run heavily on donations so its different than medicaid etc.
http://my.clevelandclinic.org/patients-visitors/billing-insurance/financial-assistance.aspx
I just wanted to reiterate what I have been reading on here. After reading the post by John below, I jumped on his advice! I too ended up getting a biotronik pacemaker from Dr. Alo in Ohio and my life is changed forever. I tried to get in to see Dr. Grubb, but he had a really long wait period. So I did my research, found these posts on here, made some phone calls and found a doctor that was willing to see me and believed my story. We did the tilt test and pacemaker all in one day. I was taking 19 pills per day. I take absolutely nothing now! Not a single pill! I haven’t passed out since getting the pacer, and am happy to get back to my life without having to worry about this anymore. And the scar looks impeccable. You can’t even see it. Honestly, Dr. Alo said he has had some training in plastics and plastic closure, you can’t even see the wound unless you are less than a foot away. So I can still hit the beach in my bikini this summer. No one will even see it. I am so grateful! Now if only I can get my bunions on my toes fixed! That’d be awesome! And people, you probably don’t have POTS, but that’s what everyone wants to call it!
Hi, my name is Lindsey and i have been suffering with pots symptoms since i was 3 years old, but just got diagnosed in 2011. All my life i had trouble staying in school my mom would have to pick me up three times a week due to getting dizzy spells all the time. I am 26 now and my symptoms are worse. I get dizzy spells twice a day followed by nausea, sometimes vomiting, shooting pains in my head, and my head feels like it’s in a vice grip. I have three kids all of which my symptoms were 100 times worse during my pregnancy. I have had 6an jobs since i was 19 all of which i got fired from due to getting dizzy all the time. I can’t drive, walk anywhere, excercise, j can barely take care of my kids and I and I’ve tried applying for disability. I havr no support from my family or my doctors anc I’ve been seeing doctors since i was 9. Why can’t i get any help from anyone?
My names Amanda I was a hardworking 22 year until one day in July I passed out at work two days later ended up in the hospital. I had been having miserable symptoms and they started to all tests then after one day real eased me. They started throwing me around to all different doctors then finally about a week ago Dec 22 2012 they finally found out what was wrong with me because of a device I jade put in my chest that monitored my heart rate. I am so lost and would like information. My episodes have been so bad and I can’t live a normal life anymore. Is this condition bad enough that I should look into some disability because that’s what my grandparents said and my doctor said he can set me up with a social worker. I’m just freaking out because I had to quit my job and now I have to medical and now the doctor tells me I need to find a seated jobs or only work like eights a week standing. Sorry to sound so bad I just need answers. I also have ashtma IBS acid reflux disease endometriosis or however you spell it. They are also worried about increasing my salt intake because I had a kidney deaease when I was younger.Hopefully somebody reads this.
We are currently on the waiting list for Dr. Grubb’s nurse practioner as we are aware of the year long wait for Dr. Grubb. She has a 6 month wait. We have already been going through this for almost 2 years but it didn’t start getting bad until over the summer. This is my 14 year old daughter. The frustration level that she is experiencing has just reached an all time high even with our two new doctors that are finally hearing us. I finally had to dump her primary care doctor as no matter how many times we tried to explain her symptoms and the diagnoses that Cleveland Clinic WAS working on, she just kept giving us a blank stare. It finally came to a head at her last appointment when my daughter had symptoms of a bladder infection and did have a positive urinalysis. She looked at me triumphantly stating that this is probably what has been causing her problems!! Yes, for almost 2 years!! On top of that we thought we had found a so called specialist at Cleveland Clinic but when she somehow passed the tilt table test he refused to re-do it and had his very immature, unprofessional nurse call me to tell me my child did not meet the guidelines for POTS. This, when during our visit he had stated with all of her symptoms she sounded like it was POTS but when I tried to ask questions, he kept leaving the room and at the end of the visit he said he would see us in 6 MONTHS!! I tried to questions what she was supposed to do in the meantime since it was 95 degrees and marching band was starting. He patted my hand and told me not to get ahead of myself. When I read this tilt table, they only put her at 60 degrees, stopped after 9 minutes because she became “uncomfortable and nauseated”. Um…duh! And this is when her pulse started to go up. Any time I do her orthostatic pulses at home (I’m an RN) especially when she is sick. Her heart rate goes from 60s to 140s from lying to standing. When I asked the very juvenile sounding nurse how the fine doctor can explain this, she simply asked if my daughter was drinking enough fluids and eating salt (for the 500th time) then suggested that we get her to psychiatry. The only reason this child needs psychiatry is because she is so depressed that she cannot function and feels that nobody is hearing her. Somehow, I finally found the most wonderful psychologist in world and not because they told me to. She is familiar with POTS and directed us to a new pediatrician who is also familiar. She right away has taken action, re-ordering labs, adding medication (which started to help at first) and re-ordered the tilt table test!! When she looked at the results and the way it was done, she said it was ridiculous. Surprisingly, this doctor is right back at Akron Childrens where she was taken the first time she completely fainted. The head of cardiology there told us that he does not believe in POTS in anyone but the elderly as a degenerative disorder. As well, not one of the ER doctors we have come in contact has heard of it. With all of the research of struggling to get the right care for this child as well as educating her school due to her absences, this afternoon the EMS shows up at my front door not 3 minutes after I was in her bedroom. They state they had a report of a teenager trying to hurt herself. At first we just looked at them and told them they had the wrong house and then she walks up behind us and show us where she had cut her leg. She had texted a friend. This is a child that tells us everything. Even the psychologist was surprised because she has shown no signs of this and usually shares everything. Thank God, I have the psychologist on speed dial. I am very familiar with our local Children psychiatry inpatient unit. It can do more harm than good in certain situations so after both her and I talked to her doctor, she gave a verbal contract and will see her tomorrow in her office. I can only keep trying to educate the school, friends, family and especially the medical community about this because this is what happens when you’re a teenager and feel “sick of being sick”. Apologies for the length of this.
Mom with an aching heart.
Hypovolemia??? My two daughters and I have EDS hypermobility. Both my girls have POTS but my youngest suffers the worst. Her cardiologist has her on florinef, gatorade and all the salt she can stand. She has tried midodrine and other combinations but they had side effects. The POTS symptoms are better BUT she still has trouble breathing (asthma-like symptoms – it doesn’t respond to asthma drugs), chronic anemia, chronic gastrointestinal pain, IBS, chronic daily headache, etc.. Here’s the obvious thing – everytime she needs an IV, she feels soooooo much better. She can take a deep breath (something she hasn’t been able to do for two years [had to quit her favorite choir]), and her headache and gastro pain is relieved!!! She sits there with the IV smiling and I’m just crying I’m so happy for her. The results only last a few hours so she sings and does the things she loves. Then it’s back to depressive (sometimes suicidal) life. We have asked her cardiologist for a trial of IV therapy but he says my daughter isn’t “sick enough”. Her primary doctor says she will have the IV trial at our local hospital but the cardiologist won’t sign off on it. Where can we get a cardiologist that can help her? She is going to be 18yo in April so she can now go to an adult cardiologist. Thanks so much! We love you and Dr. Brad Tinkle too! Jeanne
I have been getting lightheaded for the past 3 years and it is getting worse. I have done every test under the sun and my doctors say that everything is normal.?????? My new heart doctor has ref. me to Vanderbilt Tn for the day after Christmas so the waiting begins.!!! I don’t know if I have this but I have palptations alot, lightheadedness alot, I know have a sinus infection and the lightheadedness is worse now than ever. I sometimes get hot flashes and just feel hot but I don’t feel hot to my wife and my temp. is normal. ?? I had a head trama in 2007 and was fine until 2009 when the lightheaded spells started. I know this is very vague, but does anyone on here theink that this maybe POTS. I am just trying to figure this out and PRAYING that the doctors at Vandurbilt find the reason and a fix for it.
Mark,
I am a 30 year old male recently diagnosed with POTS. I was diagnosed after autonomic studies and tilt testing showed mild/moderate dysautonomia. I did a bunch of tests with an ENT and neurologist (MRI and MRA of Brain and neck, EKG and echocardiogram on heart, urine tests, blood tests, inner ear tests) , all of which came back normal. My symptoms were lightheadedness, dizziness, “rocking on a boat” feeling. I never fainted but would get pretty lightheaded at times, but especially while standing. My symptoms always were worse while standing and seemed to be much better with lying down. I usually wake up in the morning and feel normal, but then symptoms appear 20 minutes after getting up and starting my day and they last all day. I am now on a 6-month rehab program that involves weight training and cardio (starting off slow and increasing over time). I also increase my fluid and salt intake and am on a couple different drugs. Before you go to the doc, maybe something to try on your own would be increasing your fluid intake (I’d say 3 liters a day) and increase your salt intake to 3-5 grams of salt per day. I do not know what your blood pressure is like, but mine was normal so I can safely do the salt intake according to my doc. I am not sure if you are a person who exercises, but I would start doing cardio 3 times a week (do it on a bike or something where you are sitting). Do NOT over do it! Just a nice easy pace in which you sweat a bit, but can carry a conversation with ease if someone was next to you. Two days a week, start some light weight training. I would work out the legs/abs one day (calf raises, leg curls, leg extensions, leg press/squats, lunges, sit-ups, side planks and planks, leg raises) and take two days off before working them again. Start with light weights that you can do 3 reps of 10-12 with. On the other weight days work your upper body (triceps, biceps, chest, back and shoulders). by SLOWLY increasing your workouts, you will slowly build muscle which will help your skeletal pump move the blood to your brain and heart and you will increase your cardiovascular strength. Again, do not try and be superman with your workouts. If you do, you can exacerbate the symptoms. I am not a doctor, so I would talk with your doc about any salt increase or workout program, but at minimum you should increase your fluids and workout lightly (even if you feel a little crummy). It is normal not to feel to great while working out and after, but the importance of doing the workouts to build strength is key. I also take a multivitamin twice a day and fish oil twice a day. My doc has me on florinef and cymbalta also, but you will not get those type of meds until a diagnosis can be made. I am only on week 4 of the meds and exercise so I am not one to say I am “cured”, and I actually think I am going to my doc on my next appointment about maybe adjusting the meds. I was told that exercise program and fluid/salt intake is key and I have been feeling a little better since Day 1. I know not to expect anything great until after month 3 of the program if at all, so it is a matter of patience and doing everything that you are told to do. At worst, I will be a POTS patient that is in great shape after 6 months (but I am a believer that I WILL get better)! I wish you best of luck!
Brian
My daughter was recently diagnosed with POTS. She is able to reasonably manage it with powerade and salt. However, after reading through all these stories, I don’t see anything on how to manage stomach pains. Her stomach hurts during a POTS episode and then she does not want to eat or drink anything. How do I get the salt in her while her stomach hurts? Is there something that will stop her stomach from hurting?
We have been to the pediatrician, a neurologist, and a cardiologist in our area and none of them are much help. Dr. Grubb has a year long waiting list. I’d like to find a solution sooner!
Hi Mary
I have POTS and I often get stomach pains when I eat it is because the autonomic nervous system controls other organs as well as the heart, the digestive system being one of them. POTS can cause blood pooling which can make you feel sick during eating, or it prevent enough blood getting around and that often causes cramps while or after eating. I get both.
The best advice I’ve heard (I’m not a doctor by the way this is just advise I’m reiterating) is to use compression stockings etc to help prevent blood pooling in the lower body and drink a lot of water to increase blood production. Also increase (if safe for the individual circumstances) salt intake as this raises blood pressure and aids the regulation of the the blood flowing as it should through the body… I’ve noticed my symptoms ease a little since I seriously upped my fluid intake. I also changed to a almost totally wheat free diet. I ve read that helps a lot of people.
Im a 29yr old female and have suffered for over ten years but I’ve only recently been diagnosed with POTS before that my stomach pains were labelled as IBS. The POTS symptoms I have are very vast. I pass out and get lightheaded. I also get chest pain and palpatations. I am so thirsty all the time and have a constant headache, confused, stomach pains, very tired and disturbed sleep. cold and tingly extremities.
I hope I’ve helped in some way. I know how frustrating this is.
I am a 41 year old that has dealt with ups and downs with POTS for 12 years and unfortuntatley my 11 year is showing signs of it as well. My stomach pains disappeared once I started eating gluten free! I really want to do this for my son because even with the powerade/gatorade he gets stomach cramps or feels sick to his stomach at least every other day. He has not wanted to eat like “Mom” for but its getting bad enough that he is willing to try it now. Eating Gluten free has only helped with the stomach pain though, even on medications I am still dizzy, exhausted, pass out, forgetful,chest pains, palpatations, thirsty, poor sleep, weak, anxious, depressed, tingling in hands, headaches, daily diarrhea, always cold and intolerant to heat. I hate the thought that this is the road my son is on.
I do highly suggest the gluten free diet to anyone that has the stomach pains it did work wonders for me and my friend. I have been on Dr. Grubbs waiting list for 1 year and 3 months….some day.
I should probably share my miracle recovery… so here goes.. bear with me. It’s long….
I’m 26 and have been diagnosed with POTS and Dysautonomia. At first, no one could explain my symptoms. I went to my family doctor, a cardiologist, and even psychiatrists. They all told me I was either fine or crazy. The cardiologist I was seeing eventually thought I had POTS, which was half the answer. For about a year, we tried the Gatorade, salt tablets, vitamins, exercise, zoloft, florinef, beta blocker (metoprolol), still no relief. I was still passing out 3-4 times per week and almost passing out 3 times a day. I had to take breaks, lay down, put my legs up, and not push myself.
Then my life changed and I was cured!
The cardiologist I was seeing transferred out of state. I went back for a follow up appointment and I met a nice new physician who just came out of training from Chicago. His name is Dr. Mohammed Alo (part of http://www.hospitalsoup.com/listing/83853-toledo-cardiology) in the same city As Dr. Blair Grubb. We talked and he couldn’t believe that I was actually living like this. He doubted that my problem was mainly POTS. He said I probably have dysautonomia and that POTS was the manifestation of it.
He repeated the tilt test I had, but this time, let me actually pass out. The one I had before, they stopped it as soon as I was nauseated and lightheaded. He told me that I had what he anticipated. My blood pressure drops, then my heart rate goes up, then my heart rate drops to a very low level. They never knew this before. They just thought I had POTS, where my blood pressure would drop and my heart rate would go up. And that that alone would make me pass out. (This is how I understood his explanation).
He told me that the solution to my problem is a pacemaker. There were two options, a traditional pacemaker that detects the drop in heart rate and kicks on at a high heart rate to increase my cardiac output and prevent me from passing out. Or a newer type of pacemaker called Biotronik that actually detects the drop in blood pressure and increases my heart rate and cardiac output based on that. He told me that based on the tilt and the pattern I followed, that the Biotronik one would work best. It’s got some pretty fancy technology and is the only FDA approved pacer for this “vasovagal” or “neurocardiogenic” syncope and pots.
Anyways, a few days later we did the procedure… and WALLA!!!!! No more lightheadedness, no more passing out! Not a single episode. Ever! I feel the pacer come on at times, and I trust it is doing it’s job.
He gave me my life back! I was ready to commit suicide! I can do anything I want, anytime I want. I took a steamy hot shower while standing up the next day! I haven’t been able to take a standing shower (let alone warm or hot) for 3 years. I missed that!
Anyways, the pacer doesn’t mean you can completely get off the drugs, but he and I are working toward getting off the drugs. He thinks that at the end I may just need the beta blocker, but nothing else.
And yes, he checked a vitamin D level. That was one of the first things he said to me. I knew I found the right guy! And yes, he is even an Osteopathic Physician. I saw the D.O. after his name! I couldn’t help but think back to this group and what you all have said about osteopaths.
Look him up in Toledo, Ohio, same city as Dr. Blair Grubb. His name is Dr. Mohammed Alo. He didn’t have a wait at all and saw me in less than a week. The entire time from when he saw to me getting the pacer was less than a month. And he is young, smart, kind, aggressive, and energetic. Amazing bedside manner. He doesn’t believe people should live like this! I honestly love that man to death. He really saved my life. My family and I are so grateful!
The office number is from the website 419-251-3700 which is http://www.hospitalsoup.com/listing/83853-toledo-cardiology
I owe him my entire existence! Can’t wait to go back and give him updates! (but he probably already knows, since this pacer sends in nightly updates).
I want everyone to know that I am CURED!
Thank you so much for your story!! I hope it gives hope and possibly answers to many sufferers out here!! I’m soooo happy for you!!
Congrats, Candy
Well i am one of the lucky ones that got Dr Grubb as a Doctor I was laying in the hospital after being in there two week earlier for low heart rate i was already there for 2 week before i was told i needed a pacemaker my heart rate wouldnt go over 32 beats and at night it would go as low as 13 they wanted me to wait 2 more weeks before they would put a pacemaker in me. i told them i could lay in bed at home so i signed myself out of the hospital well not even a week later i was found unresponsive and i was on a heart moniter and they call the ambulance well when the emt got to my house he automatically told my boyfriend that i overdosed and when i got to the hospital they treated me as a OD so they pumped my stomach and stuck tubes down my throat and stuck Ivs in my neck. if the hospital would have look in my record they would have seen i was just in there for the same symptoms. well after i woke up 2 days later i had to defend myself worst experience of my life well a cpl days later a nurse that was taking care of me for the last month told me there was this doctor that could help me and that how i meet Dr GRUBB i was out of his network so the nurse said i probably wouldnt get the help i needed…well at 1130 pm at night a Doctor came in and grab my hand and sat on my bed and talk to me for 3 hours and then left a 3 page letter to the dr that was treating me. and that was Dr Grubb after our talk i felt some relief he is a great doctor
Thanks for going into such detail, John. I have symptoms that are almost identical to yours…I was diagnosed with Mitral Valve Prolapse Syndrome back in the 90′s and in 2010, with Dysautonomia. Besides having symptoms very similar to yours, I also have severe Mitral Valve Regurgitation. I am going to click on the links that you provided and see what information I can come up with. My Cardiologist wants me to have surgery done to repair my valve and my Neurologist agrees, but he told me I most likely would have problems post-op.
Hopefully the web site will give me some answers.
Keep well and God Bless
List of Lab Tests that Are Helpful for POTS
Hi Connie,
I’m not a professional healthcare person, but I have struggled with POTS for many years, so I can also relate to so many of the discussions and challenges. I don’t think we are permitted to share emails directly, more so for our own protection, than for anything else, but the new forum that they are working on will give us a chance to have more direct connections which will be great. I’ve volunteered to be a moderator, so I get updates on what’s happening with the group etc.
For now, here is a list of blood tests that are recommended: (at a minimum) for looking to see if there are other factors at play with POTS. And yes, there are issues with Vitamin D, and many mainstream doctors are still not testing for that, nor are they interpreting the results well. My doctor says I need to be at least 70 for Vitamin D. Each lab’s ranges are different, but the lab he uses I think goes from 30-100–and I am striving for 70. When I was first diagnosed, my Vitamin D level was 18. That’s far too low, and even without POTS, that one thing can cause severe fatigue and inability to do daily tasks.
Here’s the other list (I’m copying and pasting from the list that’s recommended here)
CBC with differential
CMP – Complete Metabolic Panel
Vitamin D, 25 Hydroxy
Vitamin B12, B6 and Folate
Iron, TIBC, and Ferritin
DHEAS
Full Thyroid Testing to include: All of These (TSH, Free T3, Free T4, Reverse T3, Thyroid Peroxidase Antibodies, Thyroglobulin Antibodies) ***** Very important — I was told for 20 years my thyroid was “fine” it was not, because no one ever did anything beyond the TSH, which doesn’t give a full picture about the thyroid
Hormones: Estrogen, Progesterone, FSH, LH, Prolactin, Testosterone Total and Free for females
Males: Free Testosterone, Total Testosterone, and Estrogen
Homocysteine
Fibrinogen
C-Reactive Protein
Lipid Testing:
H1A1c – a better test for blood sugar issues
Hello all,
I just wanted to check in and see how everyone is doing. My son Noah started aqua therapy this week. He did ok with it but it wore him out. He also started what was the beginning of his cognitive testing, it is 2 hours long at a time and with the brain fog it can be quite daunting. However for Noah, the long term memory isn’t what he has had a problem with, so asking him things that are based on that, well, he will pass those each time. It’s asking him something at the beginning of testing and coming back towards the end of it and asking him to remember it that he has a problem with. This school year is not going well for him at all. His is a sophmore and has really been struggling. He has been an A student for the longest time. He has had a college reading comprehension level since he was in the 4th grade, so this is a difficult time for him. I am trying to keep him encouraged and praying that he doesn’t give up. We homeschool, so that does allow us some ability to adapt that he wouldn’t have otherwise. But his life has completely changed, he isn’t able to play music anymore (he was proficient on multiple instruments prior to becoming ill), he can’t work in the yard (he loved doing that), he wasn’t able to take driver’s ed this summer, he’s had to give up his physical activities pretty much and until we have a close group of people that are familiar with what we refer to as ‘episodes’, he pretty much is with me or his dad and no one else. And usually he prefers me if he has been having a bad day. He isn’t great at reading his body yet and I think that he is still afraid of the ‘what if’s’ and honestly, I have times when I am as well.
We were seeing an elevation in his blood pressure with the midorine that he is on to increase his blood pressure, and since we have severe hypertenstion in our family, he and I discussed it and decided together to wean him off of the meds for a few days to see what would happen. There was an improvement in his blood pressure but no difference in his heart rate, frankly there was no difference in his heart rate increases while he was on the meds. So why is he still on them??? He goes back to the diagnostician next week and we will discuss several things including the concern of long term impact of the meds on his blood pressure, the possibility of this being a hereditary thing and the Vit D connection. Has anyone else here been told anything about a Vit D connection or a genetic thing?
I was also wondering who heads this site up? I ask this because there has been specific information that has been offered to be shared and such and I was wondering if we were allowed to share our emails in our posts? I don’t want to do anything to break the rules here. It has helped me a great deal to be able to come here and read the other stories and share them with Noah. Knowing that we are not alone in this awful situation means that maybe, someone else’s story may help us and ours for them. We will also be talking to the doctor next week about our desire to find a specialist, not sure how he will feel but that isn’t my concern. My son is. My family is. This illness has really impacted my entire family. We schedule everything around multiple appointments every week at the Children’s Hospital for therapy and such and even things such as a trip to the grocery store has to be both of the kids and myself. Then the kids can only come in with me if Noah is able, otherwise, he and his little sister wait in the van while I run in; she keeps his phone so that if she notices a symptom coming on suddenly and he can’t tell her, then she doesn’t have to try to find his phone on him. This is a struggle for all of us. I hate seeing him hurting emotionally so much.
Many prayers for all!
Chris, Welcome to our POTS support group. Like so many of us here…we all say that we’re sorry you have to be here, but glad you found us. And I appreciate all the detail you shared. That really helps especially with new people who wonder all the things that we have to go through to get diagnosed.
The salt thing that you figured out on your own is very important for many of us. A good quality sea salt is the best, instead of regular table salt. Most of us have gone through numerous doctors and been told “nothing is wrong” or that POTS isn’t life threatening. But it can sure be life changing and very difficult to live with as you’ve so eloquently explained, so I don’t think it’s right for doctors to be so dismissive of our struggles and challenges.
I’m sure you will have others chime in with some tips and more info. Right now, I’m writing to welcome you to the group and to let everyone know that we have finally been given info that we’re converting our discussions into a real forum. This is in progress right now—so it will be easier to read all the tips and things that other members have found helpful in their recovery. For now, know that it is possible for most people to get some type of improvement with POTS, and that there is indeed hope and help and support that we will share. There are so many folks here that helped me, and the knowledge of patients who actually live with this condition is great. Sometimes with these types of illnesses, it is actually patients who share the most valuable tips for recovery.
Welcome to the group Chris, and thank you for sharing your story.
I will attempt to keep this as short as possible, however my story with POTS is a very long one. To the best of my knowledge, my POTS began with a motorcycle accident, just as I was beginning working at a new job as an electrical engineer. Rear-ended on the Interstate, I walked away with almost no injury. However I did get a concussion, and one area in my back was injured. I didn’t realize there was nerve damage until some time later when I realized there is a numb spot on my back, rather large.
Some of the symptoms which I struggle with today and now recognize as POTS began literally the day after the accident. The biggest was PVC’s and lightheadedness, which the doctors told me was a symptom of the stress. Made sense, I left it at that. I knew I wasn’t breathing properly because my posture was horrible due to the muscle damage in my back, which I worked hard to correct.
As time went on, the PVC’s continued, and I began to experience near syncope. It scared me… I went to the best cardiologist in Tucson, and after months of being told that I’m fine, I finally failed a tilt table test. I was diagnosed with Neurocardiogenic Syncope. I was to keep up on the Gatorade and electrolytes, that was pretty much it. It had an effect, but didn’t fix it.
Now about this time, I realized that for some reason, my body was absolutely craving salt. To an extreme. I’d put tremendous amounts of salt on everything. Being young still, I decided that I’d just ignore it and enjoy my salty life. Through the next few years, I noticed a depression forming. I noticed that magnesium would have a great effect on my mood, as well as help the PVC’s and muscle spasms that were physically exhausting me. I kept up on the magnesium with suppliments, and it helped a lot. But then my boss, who I’d eat lunch with very often, noticed how much salt I was eating. He mentioned it, and since my wife and I had already decided to improve our eating habits, I attempted nearly cold-turkey on salt and cut it off, almost 100%. I also cut off caffeine. BAD IDEAS with POTS, which I still didn’t know I had.
I woke up one morning and noticed that one side of my face was numb. I could still feel the skin, but it was just sort of numb, kind of tingly. I ignored it, thinking I had slept on it funny, but it didn’t stop. Over two years later, it’s still present, and comes and goes. Around that time, I also noticed that I just couldn’t think. I was an engineer, and I just couldn’t think. My brain is why a company would hire me, and I was losing it. I couldn’t solve problems, I couldn’t focus, I was making mistakes, the junior engineers were outperforming me. I felt like I had just become stupid.
Continuing to struggle with bouts with PVC’s, I ended up in the ER several times, and they -finally- actually caught some on their machines. They told me what they were, and that they were “harmless.” They noticed my potassium was low, so then I kept up on the potassium and magnesium. Work issues were causing an additional severe stress on me, and I was diagnosed with high blood pressure. This is where things started to cascade down hill.
One day I was taking my blood pressure and it was 160/110. In combination with the numbness in my face and the loss of my ability to think properly made me wonder if I had experienced a stroke. This sent me into my very fist panic attack. While I remained “calm,” every panic hormone in my body was activated and sent into overdrive. I told my wife that something is wrong, and I don’t know what. I started looking on the computer for symptoms or whatever I could find, when I suddenly felt detached from my body. It was almost like I was hovering overmyself, in my memory I could even see the back of my head while looking at the computer. This did not help my “stroke theory” at all, and made it 10 times worse. It got better… so it couldn’t be a stroke… strokes don’t get better. But try convincing a panicking brain of anything other than “you’re dying..” good luck. Logic and rationalism have nothing to do with it. The panic attacks increased in frequency. Finally I figured out what they actually were, and while comforting, it didn’t help reduce the frequency. I would attempt to sleep them off, which wasn’t easy. The only way I could do so was to say a prayer and become ok with dying in my sleep, because my brain was -convinced- I would die if I went to sleep. I knew better, but… good luck convincing the brain.
Among a great many other factors, my lack of ability to think and perform as an engineer triggered my decision to leave the company I was working for, and move to California to help our 96 year old grandmother while I searched for a job that I could actually do. I figured that getting away from a stressful job and moving on to something new would relieve my symptoms, they were -obviously- just in my head. Unfortunately, things got worse and worse. I began living a perpetual, 24/7, non-stop severe brain fog and severe panic attack that never stopped. It only exploded into full-on attacks, several times a day. I was completely useless, and even got to the point where I began to understand how what I was experiencing could make someone suicidal, even though I wasn’t at that point yet. Every night I’d force myself to sleep, -knowing- I’d die while I slept. Yet I’d wake up, and simply not be able to imagine actually surviving the day. Existing like that was the most brutal thing I have ever experienced in my life.
I got a job as a photographer, because that’s all I could do. I got onto California’s low-income health care system, which is pretty tough for someone who had been an electrical engineer. I was diagnosed with “General Anxiety Disorder” and given some drug to help with the anxiety, but it made me pass out -while- I was sleeping, so I ended that one quickly. Only took two doses of it before I stopped.
One day my father called me… now my sister had been experiencing many of the same early symptoms I had experienced. I told her about the magnesium, which helped her a lot too. “Your sister was just diagnosed with POTS,” he told me. He explained it to me, and I largely ignored him because he gets all excited when he learns about anything “new.” He told me to try increasing my salt. I didn’t believe it would do a thing, but I humored him. Words can’t express how glad I am that I listened. I dumped salt on my dinner before going to bed. The next morning… the panic, the anxiety… it was -gone.- And I could think, not at 100%, more like 20%, but it was such a drastic improvement that I was nearly bouncing off the walls with excitement. But symptoms were still so bad that I still had a hard time functioning.
I told my doc about the salt and about POTS, but he insisted that it was only in my head. He gave me a blood pressure medication to keep my blood pressure down because of the salt. This helped a lot because I could keep eating salt, and not panic about my blood pressure. Even so, panic attacks were extremely rare any more, but did happen once in a while.
I went to a neurologist and another cardiologist. My GP and the specialists are all telling me the same thing, that it’s all just in my head. My GP is sending me to a psychiatrist. I did the “stand for 12 minutes and check your heart rate” test and it went up 37 BPM three separate times on three separate days, so thankfully, between that and shoving the POTS pamphlets in his face enough for him to finally admit that I have POTS, and he’s starting me on beta blockers, then in a couple months on to florinef and other standard POTS meds to see if we can get me to the point I can start exercising without throwing up. Meanwhile, he’s only humoring me to get me to the psychiatrist. He insists that what I’m experiencing may include POTS, but is obviously mostly just in my head. If not “mentally,” then physically and I need an MRI.
So that’s where I am now. I’m finally with a diagnosis and proper meds are on the way, but this mind fog continues. A few days ago I could barely write my own signature. I do stupid things like run red lights, and only notice after it’s way too late. I don’t even drive any more because of it. The mind fog has been the single most devistating symptom to my life, because my mind is what paid the bills. Now, I’m to the point I can’t even be a photographer. My wife is going to be picking up a job so I can stay at home, because that’s all I can do. It’s literally all I can do.
I apologize for the book I’ve written, but -no- professional will listen to me. No one will listen. I’m told this is just in my head, and I know it’s not. Whatever is happening is real, and I don’t have an expert on POTS to talk to. I get worried, because I get sick and don’t know it, because it’s buried in the symptoms of POTS that I experience every day. For all I know, I could also have cancer and just not even know the difference, because POTS symptoms are drowning it all out. I get hungry and don’t even realize it because the POTS symptoms are overloading me. I get sleepy, and worry I’m going into a panic attack before I realize that no, I’m just sleepy. I can’t even read my own body’s signals any more because of the extreme overload.
So I really have two questions, one more general and one more specific. The general question is just this, and it’s why I had to write my book of a post… is all this consistent with POTS?
The second is about the brain fog in particular. Mine isn’t only when I stand or sit or don’t move or do move, it’s constant, all day long. Some days are better than others. Some days I literally can barely talk, and other days I can almost pass as a junior engineer again, but it’s always there to some degree. Even on my good days I can’t program like I used to. The doc said that’s not POTS, but I don’t know if I believe him, but I’d love to know if there’s likely something -else- that’s wrong with me too like he’s claiming.
Hi Chris, I’ll make it brief. I’ve been where you are and then some. I’m a multi organ dysautonomic and my 11 year was just diagnosed with POTS and a string of other things. I have an amazing acupuncturist from china who at least could get me to where I could think and also bring my heart into line. It’s like putting air into a leaky tire. It will work for a bit and you have to pump it up again but it allowed me enough brain power to find the MVP / dysautonomia center of Birmingham Alabama. I see Dr. Phillip Watkins. I traveled there from Seattle WA and it was worth every mile. He knew instantly what was wrong (I actually got tears in my eyes when he was confirming my diagnosis as easily as a broken leg. I am on 5 medications but this combination he has come up with has given me a lot of my life back and that started within 2 days of starting the meds. I’m going to get my daughter into dr. Grubb because he’s willing to take a pediatric patient. I’m better but I’m going to see him too to find out about a new pacemaker treatment. There’s a year wait to see him but you could probably get into dr. Watkins in Alabama by the end of January. I have a life again though not always running smooth, it’s a great leap forward.
Blessings, carolyn
Hi Chris, I’ve been diagnosed with POTS 3 months ago. I took all the test I could, the only problem they said was wrong with me was my sodium was low and my Iron, my doctor told me my symptoms had nothing to do with that. I would choke on my breath, I fell down while hiking, if I breathe in to much my lungs ache, my chest aches, my hearts raises, and still they said nothing was wrong with me. I was overloaded with stress and my mom wanted to believe me but no one could find what was wrong with me. We finally scheduled a appointment with a doctor from the Primary Childrens Hospital. I had to wear a heart monitor for 48 hours. My heart would raise to 160 beats per minute. My doctor told me about POTS and diagnosed me with it, with such relief I felt better. Recently I haven’t been able to control anything I do, if someone speaks to me it will take me up to 5minutes to get what theyre saying and respond. I was taking a driving lesson and zoned out I almost crashed. I’ve been finding some interesting things because I am doing a science project on “Living With POTS.” I am not very sure ways to help you but you do have POTS. I have panic attacks all of the time, always leading to emotion swings. Before I was never even close to this, but I’m going crazy. I found that ginger tea helps with nausea. There is medication, search for it but be careful.(: Thank you.
Morgan
I have a 16 year old son who had a posterior radiofrequency cardiac ablation for SVT 6 months ago. Since then he seems to be having an autonomic nervous system dysfunction. I am not sure if it would fall into POTS, some other ANS dysfunction or something altogether different. His resting heart rate is much faster than it ever was and with minimal exertion like walking in the house it goes 120-130. He has zero exercise tolerance. If he runs to first base (90feet), his heart rate gets in the 180-190; he gets bad chest pain, dry heaves and diaphoretic. He feels like he can feel his blood rushing with each heart beat in his legs. This is all new since his ablation and is every single time he exerts. We have followed up with the cardiologist who did the ablation 4 times now without any suggestions. We are at our wits end. Should we see someone like Dr. Fisher who is a pediatrician or Dr. Grubb who is a cardiologist. I believe both have long waits. My main concern is that he isn’t causing any type of permanent damage to his heart and that he can somehow get back to normal activity.
Jennifer, I wish I knew what to say to help you with the medical aspects. I am in the same place with my 16 year old son. We know a little but there is so much more that we do NOT know. We are on the east coast, any chance you are in our direction? My son, Noah goes to PT and next week he is moving to aqua therapy but she didn’t even think that he was ready for that to begin with. They have yet to schedule him with a cardiologist, but when he sees the diagnostician on Tues of next week, I will be asking him to schedule that and I will also be letting him know that I am looking for a POTS specialist in our state but willing to go out of state. The one thing that I can suggest is to follow your mommy heart in this case. Normally I always say to follow your gut when your heart and head don’t agree; but in this case, I think that no one knows your child like you know him. I see our regular pediatrician on Friday for myself (she is a family doctor) and we will discuss scheduling a consult for Noah, and including his diagnostician via conference call. But she’s great and I would be shocked if she wasn’t willing to refer him out to wherever I wanted him to go. Good luck and let us know how it goes. I would give you my email here so we could communicate especially since we have children the same age and gender going through this, but I am not sure we are allowed (can someone tell me if we are allowed). I will check back and see if there is a way that we can communicate directly. Who knows, it might help our boys a great deal to chat with one another and have the support of someone to talk to that is going through the same thing!
Many blessings,
Connie
Hi Jennifer,
Unfortunately, the cardiac ablation is only a temporary fix and the symptoms will only get worse with it. I did a lot of research on POTS and one of my findings was from dinet.org Ablation of the sinus node may be detrimental to POTS patients. A Mayo Clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states “in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia” (Shen, 2002).
Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their “sinus tachycardia”, they were left with profound orthostatic hypotension (Grubb & Karas, 1999).
If you have any questions feel free to email me.
Yehuda
Hi there, I have never posted on this site before, actually only just found it today. i thought I would put my two cents in just incase it was helpful to anyone.
Ever since a young child I had problems with low immunity, I was always getting sick and stayign sick and even things as simple as a cold would knock me out completely for weeks. I was 10 when i was diagnsoed with extreme low bp and a few years later cardiologists started talking about this thing called POTS,we’re talking over 10yrs ago here so there wasn’t much information on POTS and not many cardiologists or DRS who knew much about it. School was very hard, I missed a lot throughout, I’d have days where I’d go and need to come home halfway through, I had numerous embarrassing moments where I’d faint in school or catch myself before I fainted, but the drama of it was enough to be hugely embarrassing. It is extremely hard as a young person growing up with POTS, your friends often don’t understand, you can look perfectly fine and don’t have any obvious sign of disability that they can grasp and understand that’s why you’re unwell. However despite all the missed classes and yrs of basically chronic fatigue I managed to get through high school and university and postgraduate study.
I have managed throughout the years to live a semi-normal life, there have been times when on the right combination of meds I was able to cope and be reasonably normal – going out, working, studying etc. However there have also been times when my life has seemed to be put on hold completely as I reccover from illness or suffered basically from chronic fatigue due to the POTS. I have had surgery for my tachycardia and this did help tremendously, however it is still bad enough to warrant beta-blockers.
I just want those of you with children with POTS to know that a parents support, understanding and unconditional love means the world. There have been times in my life when my mum was my champion, when I couldn’t get out of bed I was so weak, or when i fainted everytime I stood up, or when people would say ‘there’s nothing wrong with you, it’s all in your mind’ mum was the one who was there beside me. Around the end of last yr while on the right meds I was leading a pretty normal life ( I do have a very strict diet, vegan, gluten free and limit sugar to as little as possible and try not to drink alcohol) however I was able to run for over an hr everyday, able to socialise, work fulltime (after completing my degree at uni) I was able to cope with normal everyday life. It can be done, life can be ‘normal’
This yr I was hit with 2 viral infections, one of them being glandular fever – that had me hosiptalised and so this yr has not been good in terms of my POTS. However I just wanted to let those of you who were concerned about your children that they can lead a fairly normal life. Everyone is different, I make sure I get a good early night and also noticed going gluten and meat free really helped. Life can go on, yes it might be interrupted and this can be extraordinarily hard for young people, but my journey with POTS has meant that I am a far stronger person today and able to face and cope with things other people could not. Never give up on your children, I know it’s hard as a parent to watch your child suffer, especially with something like POTS which is so vague and for which their aren’t many ‘experts’ around (especially here in NZ!) It can be extremely stressful and as a child or young adult feeling like your parent is so stressed out or worried for you can be horrible, but knowing that they care means the world. I know that you are on here searching for answers, I think what I have learnt is that there might not be any concrete answwers, but my one answer to you would be to never give up hope. To keep fighting for your child, to keep pressing drs for tests or diagnoses, to hold onto the fact that people out there with POTS can function normally and succeed in life. It is by no means an easy journey for anyone, but it can be done.
I have been recently diagnosed with POTS, non- specific form. They gave a low dose beta blocker 25 Mg of metropolol– it has not help me fully. I get exhausted when I go for walks? What else should I do? I have tried a recumbent bike exercise bike to re condition. Is this an adequate therapy? Can I die from this?
I think that because the symptoms vary so greatly with each patient, it is really difficult to say because what may work with one person may not work for another. My son is 16 and has been sick for 4mths now. He is on midorine to increase his blood pressure and fluctsocordison (sp) to retain salt and zofran for suddent onset of nausea. He also goes to cognitive/behavior therapy and physical therapy. I would think that rather than just sticking you on a drug, that you should be in physical therapy as well. But I am also one that doesn’t believe that medication without other alternatives to work towards not being medicated forever, just doesn’t help. We are still looking for answers as well. Good luck and God bless!
~Connie
I am one of the lucky ones. I have been able to meet Dr. Grubb in person, however, i have a question: I have tried cymbalta but feel horrible, numb and have a very flat effect. I am now trying to wean off but am finding it horrible. ( very dizzy, brain fog, tachycardia, no temperature control…) I have now begun Prozac but I still feel horrible. Are there any other SNRI’s I could use that are not so horrible to stop yet also have good results for those who use them???
Stephanie, I am so sorry that you are in this group. I wish that I could offer you some advice, but sadly I am still trying to learn for my son. I am wondering why they gave you an anti-depressant for POTS? Just curious. I pray that you get an answer, I would suggest that you contact the doctor that changed you to the Prozac.
Many blessings,
Connie
Hi Commie
Dr. grubb suggested An SSRI to help balance out the serotonin and norepinephrine levels. It worked well but the side effects were not good.
Hey, so I have been having this chronic dizziness problem for years now. I always feel as if I am goign to collapse, and very off balance. I also have weakness, exhaustion, headaches, sometimes when I stand up my vision blacks out, my legs turn purple upon standing. I also almost faint when I raise my hands above my head or stand still. When I take my blood pressure laying it is fine and my pulse is fine, when i stand the blood pressure drops and my pulse raises instantly. I have yet to have any tests done besides the dr just checking my pulse/bloodpressure sitting than standing. I am scared about this. Is POTS dangerous?! Can you die from it? Or is it just moreof a huge annoyance?!? MY life has been put on complete hold and I have a small child, and it is very depressing. Please let me know if there are any POTS specialists in British columbia canada, or canada at all. And if POTS can end up killing you?Thanks
I don’t know if there are any specialist where you are at, I am still trying to find one in this area for my son. But I would recommend that you go see someone for your symptoms right away. It could be something other than POTS and with a small child, you really can’t take any chances! I know this from experience. I have always been the mommy that put herself and her health last, but I’ve learned that I have to be well to care for my children. And now that my son is so ill with the POTS, I need to be healthy and I wish that I had taken better care of myself sooner!
Many blessings,
Connie
Hey, I also have those problems and I see doctors CONSTANTLY unfortunately I can’t afford to see good doctors so I can’t get any help or people to take me seriously but I am telling you now that although it won’t directly kill you, it will get VERY dangerous I have ran off the road a couple different times while driving because I black out and I can’t drive at night. I gave up driving completely until I can get help but at least for me the longer I go untreated (TY doctors not taking me seriously) the worse I get by far. I am pregnant now and am trying DESPERATELY to get any doctors to listen to me but I can’t afford to SEE a good doctor. You may have to travel to New York if nothing else I have researched a couple of doctors there that are supposed to be pretty amazing at treating POTS.
RE: Son Has POTS – Good starting Point?
Hello Connie, welcome to our support group here for autonomic patients (patients with POTS). First, let me say, I’m so sorry you are going through this with your son. For all of us this can be a devastating illness, but we are glad that you found us here.
I wanted to respond to let you know that we have some patients in our group who see Dr. Grubb, and when they do they ask him questions and/or his Nurse Practitioner and then come back and report back to us so that others who can’t travel can get some additional input. I don’t know how long Dr. Grubb’s waiting list is, but I’ve heard it can be months if not close to a year.
However, the good news is that all of the very good and experienced POTS physicians, or facilities, don’t generally have a magic bullet in terms of something that will help any of us. That’s actually good news although it first can sound pretty scary. What I mean, is that POTS is not caused by any one thing. And there are patients, myself included, who can have significant improvements. Have you by chance seen the other article here on the site where a patient went through all the things she did to help improve her condition?
http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery/
This is a great starting point, and if you can make a list of the blood tests that are recommended, in most cases you will find something that is not optimal in someone dealing with POTS. Do make certain that you get copies of all the blood work that is done. Most of us have had better luck in finding a Doctor of Osteopath instead of a regular MD as they are more likely to do the recommended testing. Even in the case of the POTS patient who went to Mayo Clinic, I think she writes about the fact that no one addressed her low vitamin D level, which is a big problem in many of us with POTS or other chronic, kind of difficult to explain type conditions. If you can’t find a physician to order the proper blood tests, I know there is a Nurse or Nurse Practitioner in Texas who can help facilitate getting blood work ordered, but it is not covered by insurance. I think she uses Labcorp which is in almost every state, and another lady whom I met at a support group meeting used her services, and was very happy with finally being able to figure out some of the things that were contributing to her POTS condition. There is also a Doctor in the Austin area I believe, who does provide very good baseline blood work testing. He does not do autonomic testing, but he does all the tests on the list that are recommended in the POTS article, and he is an excellent diagnostician so he has helped quite a few patients from this group. He does take insurance but it would require traveling to Austin to see him. Let me know if you want any names, but it is possible to take charge yourself and find a local Doctor of Osteopath as well, go in with a list of tests you want to have done, and then make sure someone actually runs them. Even if you end up going to Mayo or somewhere else, many times there are some really critical blood tests that are not addressed and getting a comprehensive blood test and maybe even more importantly, to find someone who understands the difference betweeen “normal” and “optimal” is just critical for POTS patients. Get copies of everything in terms of his medical records. It’s important and sometimes many of us have to be our own medical detectives or find someone who is willing to go over past medical records with us to identify certain clues so that we can start feeling better. Keep us posted on what you decide to do and how you both are doing. I know the loneliness and feeling of isolation was awful for me when I first learned I had POTS.
Connie / April,
I have never posted to this forum before but would like to take this opportunity to chime in, if I may.
I am one of Dr. Grubb’s patients and have been for about three years now. I am a 44 yr old female who has been dealing with POTS for almost 10 years. In doing the math, it is true that it took 6-7 years for me to find a definite diagnosis, which was made possible at Dr. Grubb’s office. It is true that initially, there is quite a wait to see Dr. Grubb. I had an eight month wait, but for me, it was totally worth it. I was desperate to make some kind of headway in my search for answers and I found him to be so caring and concerned. He gladly takes his time with each patient, making them feel very important. Dr. Grubb’s name certainly does proceed him. Not only does he have patients nationwide, but I was told that he has international ones, as well. I see his Nurse Practitioner sometimes, as she usually can get you in sooner. She is absolutely wonderful!
This disorder called POTS definitately can turn a person’s life upside -down. I agree that there may be some type of therapy that your son needs, but I also am positive that for any patient with POTS, seeing a specialist who deals with it is a must! I had a lot of experience in seeing physicians who do not specialize in POTS…and with all due respect, they cannot possibly attempt to treat something that they do not understand
or often times have never even heard of! I hope that you are able to locate one in your area who can fill in all the answers for you. Every case is different and the cause can be just as variable. Your son is young and many times children will grow out of this condition. I certainly pray that this would be the case for your son. I have read a lot of medical documentation on this and depending on the root cause, there is definate hope for that! There are others, such as myself, who have a less common cause of POTS and realize that things will most likely not improve, but progressively get worse due a significant underlying disorder. My own, just happens to be Ehler Danlos syndrome. Not knowing was much worse than now knowing that this condition will always be with me! I have a great desire to push right through it everyday and to be as productive as my body will allow me to. Each day is a blessing, as I have to keep in mind that “things could always be worse”. I wish restoration for your child and strength for you, as a mother who feels defenseless against this syndrome. I do think that April has given you great advice and tips! Good Luck and many Blessings to you!
Thank you so very much April! The last two days have been so difficult for Noah. It’s heart wrenching for my son to tell me that his heart is tired and to become so upset because he is not able to process or retain what he is learning by that evening. He became very upset today with school. We have an excellant primary pediatrician, so I thought that I would schedule an appointment with her and ask her for her assistance in getting the full work up from the Children’s Hospital. The diagnostician that he sees there, when I asked, apparently only heard what he wanted and sent me, just the tests that he had ordered. I want EVERYTHING! I want the tests, the doctor’s notes, I want everything that he has access to, whether he ordered it or wrote it or not. And since it should have all been sent to his primary, it should be more easily accessible through her. I am also going to speak with her about my process in looking for a specialist in the state, but I am willing to travel out of state to find one. I saw that Vanderbilt is currently doing a research study on POTS patients and would be willing to take him out there and pray that we could get temporary residency at the Ronald McDonald House, but if not, I am not beyond begging friends and or family or church members to help me come up with a camper for us to stay in. I just want my old Noah back. He was into high impact Appalachian Clogging and self taught musician and he can’t play though an entire song now. He is having more difficulty with the cognitive side of this, remembering things and where he is out. The names of stuff, simple things like a flashlight. Again, I love our diagnostician, but to me, when he says that it’s not that dire, to me that is someone that really isn’t living with it. He has seen Noah a total of 3 times. Once he was in a really bad place, once he was doing good and once he was in the middle. But what the doctor doesn’t get is that it is a shot in the dark. It can change literally for Noah so fast.
I will read the article that you shared with me tomorrow while the kids are doing their independant studies (we homeschool). But yes, I would love the names and contact information for anyone that you have. And the names of any specific tests that you would recommend. I just want my son better. He is an honor roll child, has had a college reading comprehension level since 4th grade and now, he can’t remember by bedtime what he studied today. It is eating him up inside and it is breaking my heart. Do you mind me asking, how long you have been dealing with POTS? We are officially going into our 4th month now. Do you have days where you not exactly normal, but that aren’t as bad as some others? Those days are the days that give us hope, but then someone comes along and ultimately spoils it and says “wow, he doesn’t look sick” and by bedtime he could be unable to get into his pajamas because he is so weak. His PT told me that she just thinks that on mornings when he doesn’t think that he can get out of bed, I should just physically make him. Ummm…. he is skinny, but he is also 6’2″ and how do you make someone that is basically dead weight. When he is able to get enough strength up, I do make him come into the living room. Even if he goes back to sleep, I want him in there so when he is awake, he can be apart of the day. Sometimes, it isn’t about fatigue or being sleepy, as much as being to weak to move. People just don’t get it. I pray that you have a good support system. And yes, please, share anything that you can!
Thank you again, so very much April, I really appreciate it!
Many blessings,
Connie
Let me know if you decide to go to Nashville, I have tons of family in the surrounding area that might be able to help you out depending on their finances at that time. I myself haven’t been able to go to the Mayo Clinic there or Vanderbilt because I can’t travel that far alone (I now live in NE Kentucky) but I would love to hear how it goes for you.
April, I am also new at this and a bit exhausted tonight. How do I get you my email to share that information with me? I will gladly post it here if that is how we do that. But I also didn’t want to go ahead and do it if it violates the rules. Just let me know and I will get you my email information. Thanks!
April,
My daughter has been diagnosed with POTS and we are in Austin. We are having trouble finding someone who can treat her here. Any information or suggestions would be most welcomed!
Thanks,
Carol
What do I want to know??? Where to start? My son has been sick since July 8th & was diagnosised with POTS. He is on meds, but I just feel like the hamster on the wheel; as if we are going no where fast! I like his doctor a lot, but he isn’t a POTS specialist and honestly I feel that is what we need. At least to get us ‘grounded’. When sharing what I have read on the internet, his response was ‘it’s not the dire’. My response was, “not to those that do not live with it 24/7″. POTS IS that dire and my son’s life is being completely tossed upside down. I do understand the need for some therapy; both cognitive and behavior as well as just the plain ole ‘how do you handle this’. But I feel like there is more focus on that, than the medical aspect. The doctor that handles his therapy is good, but she was actually reluctant for us to find a support group because “those people are people that have been dealing with it for a long time and are the worst of the worst”. I don’t agree with that but finding a support group is difficult.
Dr. Grubb, is POTS a genetic disorder? Recently while out of town, my 11 y/o daughter started with the excessive heart rate and some drop with her blood pressure (she is NOT my diagnosed child). She also has headache and fatigue, just like her brother; but not at the severe levels that he has. Nor does she have any of the other symptoms my son has. He has had complete memory loss and confusion. While we were visiting my father, he went into the kitchen in the middle of the night and couldn’t remember where he was for about 5mins. He also has significant issues with weakness becoming so bad that he is unable to use his legs, stand or walk. I have had to lift & pivot my 6’2″ son from off of the floor & into a wheelchair to get him to the couch while he recovered from the episode. Also, do you know of any specialist in NC or around the area? If not, do you know of any other hospitals that are taking patients for research studies? I am willing to sell our home to help my child(ren) be healthy again. There was a Dr. Klein at UNC but she is ill and not actively practicing right now.
Dr. Grubb, where do I start? I’m willing to go to Johns Hopkins, Vanderbilt, Mayo… anywhere. Also, how do we spread awareness? If one more person tells me ‘wow, he doesn’t really look sick’, I think I may scream!
Thank you and God bless you for your work and this forum!!!
Alexandra, I’m so sorry to hear that you had to be diagnosed with this disorder, but glad you found us here. It’s especially hard at the beginning I think when you are first diagnosed. When I first got the diagnosis I didn’t know where to turn, but there are so many people that can get better. In terms of your having to quit your job–I don’t know. I think the most important thing that I did was to get to a doctor who could run very comprehensive blood tests. I ended up going to Texas to see a Doctor of Osteopath–which is a physician who is trained and can do blood work and write prescriptions like a regular MD, but the Osteopathic physicians also have additional training in functional medicine, and are able to give help and advice on how foods, thyroid, and other things all can play into this disorder. If you want his name let me know. He does take insurance and so if you can’t find anyone in your area who’s willing to do the tests that are mentioned here with regards to POTS, then it could be a resource for you. I will also look on my list of docs that I gathered when I was first diagnosed and see if I can find one in Vegas and if so, post that for you.
Just wanted to say–there is hope, you can get better, and read and implement as many tips from the list here as you can. http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery/
I was diagnosed with Pots just today. A year and a half ago I was diagnosed with svt and had two ablations. After the second ablation the Pots symptoms started immediately. Is there a link between the two? Also are there any doctors or anyone in Nevada? Las Vegas especially? Last one, will it be necessary for me to quit my job? I work in a casino standing for 8 hours a day and am struggling the most there.
Thanks for any advise
Lex
I have been battling pots since August of 2010. Here in Mississippi we have no medical personally that can help me. How do I contact doctor Grubbs for an appointment. Will travel as needed.
Thanks
Mike
Hi my name is Jordan. I have been researching POTS because I think I might have it. When I was 12 to 13 the symptoms started. When I stand up some times I get super dizzy and my legs became jelly and the top half of my body had full control. But my legs could not support my weight so I had to sit down or fall. So I always sat down right away. I told my mom about it and she just told me its because i stood up to fast and it happens to everyone. But it doesn’t happen every time I stand up only once in a while. But yesterday I got out of bed and sat on the edge of my bed for a few a while and read a chapter in my book cause I find it super hard to get out of bed in the mornings. I always feel so tired. But I got out of bed and when i reached my door I felt more dizzy then ever and I didn’t want to fall so I grabbed onto my door handle and the door frame to hold my self up so I wouldn’t fall and this is the first time I didn’t sit back down. My whole body just started shaking very violently. I thought it was a seizure but I looked up videos of them and what caused them and none of my symptoms seemed to match them and from the videos I watched their seizures were not even close to how I was shaking. When I was shaking I couldn’t see anything my vision just went blank and I tried yelling but I couldn’t speak. Hearing was fine, but I hurt my head and felt it hitting the door frame and the door squeaking as it shook back and forth as I held on to it. There’s just that sense also, that I feel super tired all the time and have no motivation at all anymore to do anything besides sit or lay down. Just wondering — in your professional opinion– should I go to my doctor? I am 17 years old.
Go to the doctor!
Also look up orthostatic pressure. drink fluids, salt?
I pray you are better soon.
I fainted yesterday, in front of my classmates, and it was bad. I was very dazed, i fell hard and hit my head, i could barely speak. my pulse was visible in my neck but they couldnt detect any peripheral pulses. I was diagnosed with POTS just last month, but have been having problems for years, and it has been getting worse and worse, quicker and quicker. I can barely stand up on the first try , my blood pressure keeps dropping lower and lower when i stand, and my pulse goes from 95 to 150 when i stand up. my body is so tired i can barely do anything anymore, i have been so dizzy lately i know i am at risk of fainting again every time i stand, and i will if i dont get more help. i am trying to start my life, i am only 19 and i am about to start an internship but i am terrified that if this keeps going the way it is going, i wont be able to get out of bed anymore.
I am miserable and scared. right now i am taking Florinef and eating heaps of salt. I know i need to consult my doctor about other treatments but they dont know alot about pots and i dont have money to go to a specialist. i know i cannot live like this, all i want is to have a normal life
Hi,
I’m 24 years male, I had faints when i was young during school standings, and sometimes in the shower, never knew what it was, years later i continued to have such symptoms, but have always been ignored and I always said it was because I’m tired, or some other reasons, later I realized how much I hated crowded places, and noises, now and only TODAY, I was reading about this thing called POTS, I thought I had hypotension, then thought it was reactive hypoglycemia, then thought it was heart problem, but when combined it seems like I have POTS (I’m seeing a cardiologist on 4/10 to confirm this).
I have managed it very well, and for some WEIRD REASON, I have naturally adapted to many of the things people with POTS recommend!!!! I’m so well hydrated I have been told, I have abnormally good leg muscles, and I adapt ways to stand and sit that suite the condition, its so weird, because I never knew I had this thing before, I also think my younger brother have it, he is only 8 years of age, and hates crowded places like shopping malls n sutff, drinks lots of water, and eats only a little each time, no one told him to!!!!!!!….
Now that this is affecting my work, and because I have to sleep less, and work more, I am trying harder ways to cope:
1. I’m going to buy compression socks.
2. Carry fluids with me all the time.
3. I’m going to raise my bed from the head side to get better sleeps.
4. Try to make a better environment for my sleep.
5. I’m going to get ear plugs and use them at work when it is too loud.
AND MOST IMPORTANTLY: Cheer-up (Because I have found that stress is the second main reason I get this thing after exhaustion).
WHEN IT COMES I:
DO NOT EXHAUST MYSELF
AVOID NOISES, EVEN TALKING TO PEOPLE
WALK AROUND WHEN IT COMES (Change places, if m inside a place, i go outside)
TAKE DEEP BREATH AND BLOW HARD AND FAST
DRINK WATER
SOME SALT IN MY POCKET ALL THE TIME
and hope to finish the shift so that i can go back to sleep.. lol
good luck to everyone, i hope people keep sharing what they do to overcome this, because I have overcome this for the past maybe 8 years, without knowing what it is, and was very effective, nothing bad happened, I played sports of all kinds, and did alot of jobs that required me standing for hours and hours. It should not be a problem if you don’t make it one, do things that cheer u up, get ur muscles working, and ur mind positive, the more excited u r the more control u have over ur body, m getting an MP3 too, listen to favorite music, and cheer up, have fun, and joke, works like a charm.
Good luck,
praying for everyone
Is there a chance that POTS could completely resolve if a symptomatic posterior nutcracker syndrome is corrected? I’m 56 and I think surgery (hysterectomy and repair) is what really brought on my POTS. I had minor symptoms until then. I recently had back kyphoplasty on T6, T7, & T8, and am now in a POTS crash & painful nutcracker symptoms.
Re: Diet Question
Hello Yadira,
I think you are right on track to try different things and then see what helps make your symptoms better. There is another article that is published on this site which lists different things that another POTS patient used in her recovery process and diet is one of them. But as Jane also just commented here in this thread about her daughter, I think customizing things is so important. Jane mentioned that her daughter adds salt to her meals because she doesn’t like soup or some of the other salty foods. My naturopath also says that some people who crave salt can have adrenal problems and so I actually feel better also when I add sea salt, not table salt, to my food. The other tip I learned is that keeping a journal really helps. That way you can track how your are feeling from day to day and write down how different things either help or make certain symptoms worse. Finally, I think it is so important to get the right blood tests and then have someone qualified look at the results and figure out about the “optimal” vs just “normal limits”.
I’ts so nice to be able to talk with other people who are going through this and to get ideas and encouragement. Would love to hear back from you on how you are doing and what works for you so please post updates and feel free to ask any questions. There’s a wonderful support group for POTS patients here.
Re: Hope and Getting Better
Hello Jane, Your post brought goose bumps to me when I read it. The strength and determination that you and your daughter both have shown through her recovery has been remarkable. And yes, everyone is different but sharing some of the techniques that your daughter used and customizing those techniques to fit what worked for her is very helpful for anyone struggling with an illness such as dysautonia.
I’m just curious also if your daughter had any of the recommended bloodwork done that was posted by another POTS patient on this site. What I have learned from this board and other patients is that there are some lab tests that may be “within normal limits” but are not optimal and getting certain lab values into an optimal range helps with strength, and reducing tachycardia in many cases. Just wondering if you went through any of this and if so, what was found in your daughter’s case? Thank you so much again for sharing how both of you coped. Hugs to you both. Jennifer
I have POTS and I was wondering if I should be concern of leading a strict diet. There are days when I feel good and other no so good. I try to keep a regime of exercise because I feel like its the only thing that helps me to control it. But not always this is the case. I also heard something about the blood type diet. Would that make a difference? I guess the only way to find out is by trying it.
I am not sure this will help, as each individual is different. But, here is a bit about our journey.
Hope!
Our journey with POTS started about four years ago. My daughter was getting high marks in school and playing on two soccer teams. Then, she began having flu like systems (dizzy, tired, night sweets, hypersensitive to light and noise, etc). The doctor told us that she was fine. Over the next two years the systems worsened to the point that she looked grey, had purple feet, and could not stand for more than 3 minutes before fainting; and the doctors and specialists said that the problem was in her head, depression that there was nothing physically wrong with her. I knew that the depression she was having was due to a lack of diagnosis as the child had been what she called a pin cushion for two years. I took her to a psychologist who confirmed what we already knew, now the doctors would have to listen. They didn’t, because they did not know what was wrong and wouldn’t admit to it. Luckily, the high school counselor told us about the Mayo Clinic (no referral needed). She was scheduled for a full week of exams. But, it was the first exam that meant the most. Dr. Fischer talked with her for about 15 minutes and gave her the best medicine there is, HOPE! Following the additional appointments, we talked about the medication(s) and the STIMS Unit offered. She chose to not take medication as all medications in the past made her feel like she was in a “fog”, but did not help with the pain. She did decide to try the STIMS Unit, but it too seemed to do nothing for her. Thus, she is fighting without aid or so I thought. She was learning how to manage the pain on her own.
The last couple of years have been mentally challenging for the both of us and physically challenging for her. The first step was changing our thinking process. This syndrome must be fought. We both have to think of her body as being in “training”. Like that of professional athletes, they have a strict diet and exercise schedule. As for the diet, we increased her sodium with lots of Gatorade (she does not like pizza, potato chips, pickles, or soup) and add an extra 1/8 – 1/4 tsp of salt added to her meals. Next, the exercise program that she is suppose to do (I must remember that she is a teenager).
Exercise, I have learned so much! First, she chose a heart rate watch. She had to learn how hard she could push herself without fainting. For her, 120 (tilt table test, 168) was pain tolerable. She began by sitting and lifting 2 pound weights. Then, squats were added. Once that seemed tolerable, she worked on walking. I was not as patient. I wanted my healthy daughter back, now. I thought she should push herself harder, selfish and ignorant. She explained to me that she only has so much energy in a day. She picked up a bunch of spoons and told me that was how much energy she has in a day. To sit up, she uses one spoon (she handed it to me). To stand, one more spoon. To walk to the bathroom, two spoons. Brushing her teeth, one spoon. Bath, ten spoons. At this point, she was out of spoons to hand me. She told me that sometimes she can “borrow” spoons from the next day to complete a task the current day. I realized a lot that day. I went from being the “soft” parent to being the “overbearing” parent. Now, I am the supportive parent. I let her progress at her rate. On bad days, I listen and urge her to help me with an activity (anything I can think up: look something up on the computer, fold towels, help with dinner, etc.) that she can push herself to do that day. An encouraging reminder of how far she has progressed always seems to help, even if just a little bit for that day.
Today; we go to the gym together three days a week. She works on the stair master for about 15 minutes (stairs are still a battle). Then, she rests. It is amazing to remember where this journey began and where we are both at now. She no longer faints. She can read again (migraine headaches kept her from reading). Wow, I remember waiting in a doctors office. We were both flipping through magazine pages, when she took a deep breathe and said “Mom, I just read the article!” (sorry about that…memory lane moment). Back to what she can do: take out the trash, washes her own clothes, helps with dinner, and vacuums. A couple weekends ago, we went horseback riding (she had to rest the next day). Last weekend, we went to an indoor stadium baseball game and a fireworks show that followed, 6 hours, without eye protection or ear plugs!
She has not taken any medication. Instead, she learned how to manage her pain and fights to be free of this seemly debilitating syndrome. I am excited to seem what the next couple of years will bring…
Re: Daughter is Better – There is Hope!
Jane, I’m so happy for both you and your daughter. That is such good news, and how wonderful for you to come and post to encourage others dealing with this most challenging illness.
Were there any particular things that your daughter did that helped her with her recovery process? It would be great to have more info about her experience and how her recovery progressed. Thank you!
There is hope! My teenage daughter once could not stand longer than 3 minutes before passing out. Four years later, she can read again, help with household chores, and even go horseback riding.
Re: Can Anyone Ask Questions Free
Pauline, yes, this POTS support group is totally free so you can ask anything you wish. Janine, I understand your frustration. But yes, there have been many other patients who were very debilitated and who have gotten better. It is such a frightening feeling— I remember when I first got sick and couldn’t function and I was terrified that I would be unable to ever recover. But slowly I have gotten much better, and I know there are alot of others who have made significant improvements or recovered completely. Everyone is different though and an individual.
If you can share more info about your daughters’s case, and her story someone here can probably give you some specific ideas on what to have checked etc. How old is your daughter? Sometimes POTS will have a bit of a different course if one is younger vs having the first incidence as an adult. Did your daughter have some illness like a viral infection that seemed to trigger the onset? Do any of the techniques that others have shared seem to help at all? What types of blood work and testing has she had done? Do you have copies of her results?
I will be back here to answer some of the other questions and welcome some of the other new people as soon as possible. Glad all of you are here. I know it’s hard but just know that you can get improvements with this syndrome, but that for most of us that also means really working in partnership with our physicians and making sure that certain things have been checked. It’s not generally an illness where you can just go to the doctor and blindly accept what they tell you to do, as sometimes it’s a combination of things that can help: medical intervention sometimes, diet, looking at what exercise can be done–even if it’s just sitting down and doing some leg exercises, and for sure, getting a really good set of blood work and addressing some of the things that even some specialists don’t test for.
I have been reading through these comments and havent come across someone who is totally debilitated from the Syndrome. I am wondering if my daughter’s case is uncommon. She is unable to sit or stand for 5 seconds without fainting. She is 100% herself when laying flat on her back but any elevation at all sends her heart rate way up and she collapses. I am desperate to know if my daughter will ever sit, stand or walk ever again. I am desperately seeking answers as this is very recent for us. PLEASE HELP!! ARE THERE OTHER SUFFERERS IN AUSTRALIA.? Is my daughter case severe? I really need some answers.
can anyone ask for free? for advice? thanks
I was diagnosed with pots symdrome 6 months ago but nothing is helping. I take 1 atenolol and 2 fludocortisone a day. Also not all my symptoms can be explained well I started having this felling at 8 years old now I’m 17. I sleep maybe 4 hours a night I just can’t sleep, but I’m exhausted all day. I feel so tired and beat like walking to the kitchen is running a marathon. I also have extreme nausea, and other stomach pains which are sharp and give me the chills. I get pain throughout my throat like someone is strangling me, it gets worse when I’m under water then I feel like my throat is completely closed up. I have sharp pains in my left breast. I also have had bloody diarrhia and stool since I was 8, but the blood started when I was 11. I also get extremely hot and sweaty ( really bad night sweats.) when I’m at my worst it Isley hits me really hard and I can barely breath, my legs get weak and then I fall. I also have had sleep paralysis since was like 7. They diagnosed me with pots after a tilt table test (I had most of the symptoms above.)+ I threw up when they lifted the table. It started 5 minutes in and my heart rate went to around the 150′s and my blood pressure dropped to 32/25. They kept me up there for 20 minutes until they put me down. I was so exhausted I could barely walk. This all confusing and I don’t know what’s going on… Any ideas?
My dr. has diagnosed me with Dysautonomia but said he can’t figure out where I fit because my symptoms don’t fall under one specific form. He even spoke to Dr. Olshanski in Iowa who is supposed to be the 2nd best in the world under Dr. Grubbs. Dr. Olshanski was even stumped. Now I’m considering going to UAB in Birmingham, Alabama as its the closest to me. My dr. wants me to go see Dr. Grubbs but I can’t afford to travel that far. Is there anyone that can be recommended closer to Mississippi other than Vanderbilt? Please give any advice. It is greatly appreciated.
Need help …..please, does my daughter have POTS or not. One doc says yes one says no another yes another says no… has all the symptoms of POTS, increased heartrate when standing, Dizziness constant 24/7 for 13 yearsnothing helps. She keeps hydrated, salt doesnt help. lying down doesn’t ease dizziness. DOES ANYONE KNOW A GOOD DOC WHO IS A POTS SPECIALIST IN NY? Please help she is completely disabled. Can’t even move around the house. Does dr Blair read this? Please any help…. thanks Kathy
Hello,
I have a history of undiagnosed seizures. My sister has recently been diagnosed with POTS. I am wondering if I could also have POTS and this would explain my seizures.
I have dizzy spells often and have always ignored them. This spring I had mono and have been slowly recovering. I have had times of chest pain when not doing anything.
I have suffered with mild to high depression since teens.
I am not a hypercondriac, I am just wondering if this could explain my weird medical record that no doctor can. The closes I came is my Acupuncturist and he even says I am weird. LOL, I knew that! However to be able to receive health insurance with out a real diagnosis and seizure history with no name is impossible!
How do you know when you have recovered from POTS or are on that path? How long after you have been diagnosed can you look forward to the recovery? What types of POTS are the ones with more recovery success?
Can anyone tell me if POTS would include a slow acclimation to exercise (in this case, as easy as walking or hill sprints — hiking) then getting going and doing fine (not included in my question is heart rate topping out — that for another day) but AFTER exercise (as easy as a walk for 30 mins) I feel worse if I stop moving. Like, if I lie down because I feel increased HR and generalized blah, my HR is worse. As this is anywhere from 30 mins after ex up to a few hours!
My concern is increased HR after exercise for up to a few hours if I don’t take anti anxiety meds.
I’m not dx’d and have a cardiologist appt mid May but I seem to have many similar symptoms. I’ve not seen anyone say why they feel bad after ex.
I’m writing on iOS so it’s a little difficult here.
I have POTS and EDS-Hypermobility-type. I am attempting physical therapy, but my POTS is interfering too much. I am wary of medications because I tend to be overly sensitive–I have unusual reactions or need merely a fraction of a “normal” dosage, or I metabolize drugs too slowly and they build up causing additional problems. Beta blockers were miserable, antidepressants make my weight climb, and do not provide pain relief, and I just can’t make sense of what is most appropriate for me to take…the most benefit with the least amount of damage.
Secondly, local anesthetics, including epidurals, are not effective and I have had severe trembling and B.P. issues with epinephrine administration. How do these issues interact with norepinephrine issues in POTS? What type of local anesthetic would be preferable to use in a patient with these issues?
Thank you.
Dr Grubb,
My daughter (20yr old) has had POTs for 2yrs and her original complaint was “dizziness”. After numerous tests and participating in research in Valhalla,NY.. we were diagnosed with POTS. We have been treated at CHOP (Children Hosp. of Phil) for the past yr. Her “dizziness” is still persistant and we went to an ENT who after many month of testing finally did a test of the middle/inner ear and says that she has Meniere Dx as well. Have you had many pt. with POTS and Meniere Dx? and the treatments seem to cancell each other out!
Any suggestions would be appreciated.
Judy
I was recently diagnosed with POTS at Mayo, Jacksonville. Unfortunately my assigned dr. suffered an unexpected medical emergency so he is not practicing right now. His nurse contacted me to confirm the diagnosis over the phone. She said they would mail me the test results. I am still waiting for those. My symptoms have been getting worse over the past month including loss of muscle control in my hands, to the point that I am unable to pick items up at times. I am not sure what to do at this point. Do I just go to my PCP who probably doesn’t know anything about this disorder? Is loss of muscle control a normal symptom of POTS. I know this is more than one question, but am quite sick and am in need of guidance.
thank you!
I live near Seattle, WA. How do I find a doctor that knows about POTS? I have been through echos, dopplers, x-rays…they cannot figure out my symptoms…which are all POTS symptoms. I have been sick for 2 years and unable to work since last year. I really need some guidance. Thanks
How would you know if you are going through beta blocker withdrawal or if you have POTS, when stopping the beta blocker?
Can beta blocker withdrawal mimic symptoms of POTS?
What are symptoms like with beta blocker withdrawal/ rebound?
Is tachycardia constant or only with activity?
I really want to know what peoples’ experiences are like when they stop a beta blocker. I understand what the withdrawal symptoms are, I just don’t understand if most people only have withdrawal symptoms when a they stand up or are they 24/7? I haven’t found a website that explains WHEN the symptoms occur with beta blocker withdrawal. Mine were only when I stood up. It fits the POTS descriptions to a T. I let my “withdrawal symptoms” go for 5 days without any improvement. My doctor put me back on the beta blocker and within an hour felt 95% better. He thinks it is just withdrawal, but is unsure because I had these symptoms along with high blood pressure when I was put on them in the first place. It makes sense now- I was diagnosed with HTN, but most people are asymptomatic with that and I was confused as to why I could only walk 25 feet without getting SOB with a high HR. The CCB and BB made it 95%better. I think I am answering my own questions, I just wish the doctor would understand this too so if there are any more treatments that I am missing I could have so I could be cured or feel less tired.
Thanks for your time!
Ahh… sorry also SPECT scan showed, decreased blood flow to the brain.
KathyO
My daughter is 27, at 14 she suddenly got sick. She was tested and had a tilt table test 12 years ago and the dr. said she had POTS. Her standing heart rate was 150, but her blood pressure remained normal. He tried 2 medicines which did not help and said she was an enigma. 12 years later she still has unexplained palpitations, constant disabling dizziness(24/7) for 12 years, She just went for a 2nd tilt table test and her “standing heart rate was 130 but again her pressure remained stable. She also has a high ANA , they thought she had Lupus but s skin biopsy showed no, has autoimmune problems, her autonomic nervous system is overactive and her dizziness/fatigue is exacerbated the week before and during her period. 61 dr.s and no answers. Please , and help, or thoughts? Thank you so much!
Kathy O
I am 56 yo, and have POTS, along with CFS and FM. So far, my MD has tried me, separately, on Labetolol and Diovan, neither of which have done much, if anything, and I think both lowered my BP, which is on the low side of normal, already. When I see her next week I’ll be asking her to try Midodrine, instead. I have gotten conscientious about wearing compression garments from my rib cage to my feet, have increased my salt consumption on my food, am adding electrolytes to my water, which I drink plenty of (at least 2 liters/day), and I spend much of my time reclined on the couch, so I don’t keep my heart racing unnecessarily. When I first tested myself at home, from supine to standing in less than 5 minutes my HR was over 140, and even with all that I’m doing now, it still gets up to 133-137 most mornings, just coming down the stairs. It’s much better at night, of course, so I try to plan chores and shopping for later in the day, and delegate as much as possible otherwise.
My question for Dr. Grubb is what kind of exercise regimen he would recommend for a patient in my position. I am currently using a recumbent bike which allows me to lie down completely, in short blocks, with rest in between, 2-3 x per week, with core on other days, along with minimal dog walking (out back if early in the day, where I have a chair, or up to two 8-10 minute walks later in the day). So far, none of this has caused me to have a CFS relapse, and I will add tiny increments at a gradual rate. But I would like to be doing the best exercise, and I don’t know what would be optimal, while not triggering Post-Exertional Malaise from the CFS.
Thanks.
I was diagnosed in the summer of 2010 with my own research and findings after thousands of dollars and many doctors. I was finally officially diagnosed by my cardiologist. I am 38 yrs old and have always been healthy and very very active. Working out my whole life. The summer of 2010 came and it was like a switch was flipped on overnight and I hit a brick wall. I have yet to find a doctor that knows anyning about it. I have an appointment at KU med center Kansas City to see a neurologist but have doubts. I just don’t want to spend thousands of more dollars on testing not needed. I had my cardiologist run many tests to rule out things that I researched that could cause POTS. My B12 is on the lower side at 250 and I do think my symptoms seem worse if I get that low but my question is what tests do you recommend to be done to rule out possible causes of POTS? Im sure case by case varies but are there any specific general labs/tests that should be ran on every patient to rule out causes? I just want to make sure I have covered many of the tests. Also many people on the Facebook POTS page ask the same question over and over again but none of us have a for sure answer from an expert. I’m overall feeling ok just really tired some days. Im on my beta blockers and exercise and increasing fluids but worried I’m missing something that could make it all go away or missing something that could be very bad that needs further treatment and evaluation.
My sister was told that her 70 pound weight loss contributed to her developing POTS. The doctor suggested that she see an endocrinologist and start cortisol/cortisone treatments. Has anyone had this type of treatment and was it successful for you in eliminating many of the symptoms? Any advice would be really appreciated!
My daughter is 16 and has had POTS for 4 years. It is amazing to read the stories of hope and despair. We are still living with both. Although when I look back at what we thought was despair, I now see that things are a lot worse than they were. I hope her health does not continue to decline.
We live in a remote part of Australia and the idea of finding a GP or specialist who has a clue about how to help us has faded after many attempts. The last Doctor we saw, who was vey nice, asked what medication WE thought he should prescribe!! I have done a lot of research but as you point out the science around this is very new. Most medications require a high degree of monitoring. We did try SSRIs but unfortunately my daughter is not particularly compliant so this did not end well.
So I am interested in if you know of any expertise in Australia which we might be able to refer to? There seems to be a lot of emphasis on gut bacteria and my daughter’s tests of fecal bacteria have shown she is totally out of kilter but the Drs are saying that there are no proven approaches. Definately the cocktail of antibiotics and pro-biotics we have tried have not assisted.
Thanks
RE MULTIPLE QUESTIONS ON FLUSHING: Research and trial and error confirmed than in my case, Midodrine was the culprit. Smaller divided doses helped, and after a week they significantly lessened. (2.5mg 3 x per day rather than 5 once or twice daily)
Jennifer: this is a frustrating disorder. Even when I present My findings from MAYO and the dx POTS, the MDs don’t believe it. But at least my MD will treat the symptoms even if he doesn’t agree with the dx causing it. The flushing is a side effect of (if you are on it) Midodrine, one of the first line drugs for POTS. I had my dose broken into smaller amounts, and after about 5 days, my body got used to it and the symptons improved but are still there. (II am only on 2.5mg 3 x per day). Look on the website and read about this syndrome. The feet changing color I did read as a sympton of POTS. The low BP again very common, some website advise lots of fluids (3 liters per day) and lots of salt over 4 gm per day) to maintain hydration which will help keep BP up. White elastic support hose (TEDS) also help keep BP up. Standard meds for POTS treatment are Midodrine, florinef (helps with preventing dehdydration) and betablockers (keeps pulse rates down). A high pulse will also pull your BP down, this is the normal heart response. Good luck. Do some ressearch this is your best bet.
I was just diagnosed with POTS 2 years ago by my neurologist (I’m epileptic too). I also have migraines and a gluten allergy. I don’t have children, but I was wondering if it is safe to have a pregnancy with POTS, epilepsy and gluten allergy
LOOKING FOR MD HELP? I found on INET MN Mayo much better for neuropathy than FL. My MD (@) recommend Vanderbilt in TN
Dr. Grubb. I am writing to you because we need your help. I do not know how long my brother in law could hold on. We suspect that he has POTS. And of course he has been told that it is all on his head. Told that he is depressed etc.. Which of course if a person feels helpless and sick all the time and not having an answer in regards to what is wrong with him, plus can not function at all. Well of course that person will be depressed: Don’t you think? We live in Dallas and currently are trying to find a doctor that treats POTS. We know that of course you do not have a practice at Dallas, TX. But we wanted to ask you, if you could refer a doctor to us. We know that you have a busy schedule but we beg of you to reply to this request as soon as you can. My brother in law is getting worse and worse. My brother in law is a 30 year old man that has lost a big part of his life because of his poor health status and we do not know how much more he can hold on. In a few words we are desperate for help.
We have a 14 yr old son. In the last two weeks he has been in the hospital for ‘syncope’ and the first time they told us he has POTS. Since January 2012 he has had arm/hand tremors 2-3 times a day, with these he would get dizzy (room spinning), blurry vision and an electrical burning smell. We saw our PCP regarding the tremors on Feb 6 and he referred us to Neurology at Seattle Children’s. We saw Neurology on Feb. 13, they ordered an MRI and EEG. These were scheduled for Feb 26. On Feb 21 he passed out, his symptoms where extreme dizziness (room spinning), blurry vision and an electrical burning smell. He was standing so he sat down put his head between his knees and fell onto the floor. He came to within 2 minutes. He got up, walked to his room with is feet shuffling and pointed inward. He stayed home for the rest of the day and even while laying down he was dizzy and had blurry vision. We took him to the ER and they gave him fluids and got him up and walking. The next day he was absolutely fine, we had moved up the MRI and EEG to that day. On Wed, Feb. 23 he got up to get ready for school and became extremely dizzy, blurry vision and the electrical burning smell and started to pass out. Every time we would sit him up he would pass out. He said the room would spin, his vision was blurry, he smelled the electrical smell and everything would start to close in and go black. We then decided to take him to the ER at Seattle Children’s. There he repeatedly passed out every time each new doctor would come in to talk with us. Neurology did an EEG in the ER and the Cardiologist did EKG’s. All test were normal. He was admitted because he was still passing out when he would sit up. The next morning he was still passing out upon sitting up. They gradually raised the bed over the day to a sitting position. He was able to sit up with out passing out and then stand. But when he would stand he needed assistance to walk and his feet would shuffle on the floor and were turned inward. He says his legs feel weak. By Sat, Feb 25 we went home with having to assist him to walk. The discharge diagnosis was POTS. We were home until Tues, Feb. 28 when at his follow up with is PCP he passed out during the appointment. He was able to sit up and stand prior to the appointment and walk with assistance. After about 45 min he was able to sit up with out passing out. We went home and waiting 24 hrs to see if he would get better, but the symptoms worsened so our PCP referred us back to Seattle Children’s admitting him again. This time the doctors said they did not believe he really had POTS, and had psychiatry come speak with him. Upon a conference with them they said he really was not passed out because when they would lift up his arm and drop it he would avoid it hitting his face, yet it hit the side of the bed AND did hit his nose. We were discharged today, Sat, March 3 with just a diagnosis of syncope (however the doctors do not believe this is what he is doing). We are curious to see if this all happens again next Tuesday. His tremors have stopped and the passing out started. He is now staying out longer when he is out and they say there is nothing wrong. Can anyone help direct us to an expert in the Northwest? Somewhere in Washington, Oregon or Idaho?
Cardiologist dr. Peter hesslien at Swedish in Seattle. He has taken many classes from dr. Grub and feels he is magnificent in his field. My daughter is on beta blockers but we are still fine tuning.
Blessings, carolyn
I have a 16 year old daughter diagnosed with POTS in early October. While she has fainted a couple of times, her biggest issues are stomach pain/bloating/heartburn etc. She was experiencing full body tremors that would last for hours. This has improved since she was put on atenolol. The GI doctor put her on Neurontin and Amytriptolene. After being on those for a while, she became very depressed and has had frequent panic attacks. In the last couple of weeks, she has been taken off the Neurontin and they have decreased her Amytriptolene, wanting to start her on antidepressant or flourinef. Has anyone found any significant improvements with either of these. Does anyone know of a good doctor in NC?
I’m so happy to see all this information. My daughter is 15. Was diagnosed with Juvenile Diabetes at the age of 10. Depression and anxiety after being put on gabapentin for a knee injury followed. Then Hashimoto hypothyroid. Had tremor incident while working out like she was freezing but she wasn’t cold. went the the ER and no one could figure it out. Went to our family doctor and she referred us to a neurologist. She doesn’t faint but has the dizziness and drop in blood pressure when going from laying down to sitting and then pulse goes up when she stands. Our neurologist is from CHOP and they do have a cardiologist who is a pots expert. we are seeing him in April. Any little things you can share with us would be great. She’s a basketball player and travel season is starting…. Thanks so much.
CARDIOMYOPATHY(ef 31%) AND POTS.I was DX with POTS- neuropathic- via FL Mayo However I have additional findings I have not heard from others about. Mild ataxia with loss of balance.Brain MRI sm vessel ischemia & convolutional changes & multi focal hyperintensities (not MS or Parkinson pattern), documented short & intermediate term memory loss. Output greater than intake despite type of fluid, High salt intake causes edema while I remain intravenously dehydrated; low cortisone level, low ACTH plasma & urine Negative adrenal & pi?)tuitary work up (Hypothalmus?) I am trying to get into Vanderbilt.. .Do I have something else wrong too?
Hi my name is Jennifer was diagnosed with POTS 2008 I was wondering what is the cause for flushing my hands, knees, and feet always change colors for no reason, and also when should I be worried about my blood pressure it normally runs (Normalish) 125/75-80, but there are times it drops to 99/58 should I be concerned when it drops that low? People out of the POTS community says that’s great blood pressure, however I’m symptomatic at that point I just don’t go to the hospital cause I get tired of arguing with the Doctors, are there key words that we can use that will catch their attention rather than give us the it’s all in your head speech, or it’s Anxiety?
Hello. I had a partial thyroidectomy for overactivity in 1972 and through the years my throid function is nil. I have been recently diagnosed with POTS at the age of 67 having had progressive symptoms for at least 35 years. On thyroid replacement hormone for many years my tsh remains stable for only a couple of months at most. I then become either hyperactive or hypoactive over a period of two weeks having related symptoms. i am wondering if POTS might be associated with the inability of my body to maintain a stable tsh level. Thank you
Hi
I was diagnosed with POTs 2 weeks ago. I suffered with this since I was 7mths pregnant. I was told that I had pre-neurocardiogenic syncopy. it has been 21mths since I had my child but feel worse than ever. I live in Orlando but went to miami to get help. That’s where I was diagnosed with POTS and complicated migraines. Do u know of a doctor in the Orlando area that can help me. I am so frustrated. Thanks!
I am the mother of a 17 year-old girl who has been suffering of POTS and Neurocardiogenic Syncope for almost two years now. Despite the fact that she has tried every standard POTS medication out there (in every possible combination), does everything asked of her (compression stockings, water, salt intake, exercise etc) her symptoms haven’t improved. They have actually gotten worse. She is affected by most POTS symptoms, however dizziness/ lightheadedness, nausea/ stomach cramps and brain fog are the ones that she wishes she could at least improve. As her parents though we are mostly concerned about her syncope episodes. My daughter has been fainting regularly once a week (often 2 or more) since Nov 2010. Even though her episodes seem to follow some sort of a consistent pattern (same day or time each week) they don’t seem to be triggered by any identifiable cause (hormones, stress etc). The episodes happen usually at school (since she refuses to be home schooled) and shortly after she gets up from her seat (while walking- never sitting). She gets no warning whatsoever!! We want these episodes to stop before she gets seriously injured! But my question now has to do with the syncope episodes themselves. Nobody (neurologists Mayo-Jacksonville, Cardiologists Duke etc etc etc) has been able to explain to us why, when she is -still on the floor/ supine- she goes in an out of consciousness several times. Most of the time, with no sign of tachycardia. The longest she has been out is 15 min.( that is for the initial syncope ) and the subsequent ones can go anywhere from seconds to 10 mins. The entire episode can last anywhere from 20 mins. to 2 hrs! This is all while she is still flat on the floor ! The only thing that is done for her is to try to elevate her legs. She is very alert when she wakes up each time. She has been tested for everything..including Epilepsy but everything comes up normal, except for the 2 tilt test that have confirmed severe neurocardiogenic syncope and POTS.
Has anybody heard of syncope episodes like these?)
Elisha, I just read your post. We live in Charlotte NC. My daughter is seen by a Cardiologist at Duke – Steven Kanter- who treats patients here in Charlotte once a month.
I suspect I have POTS. I have been diagnosed with Migraine Associated Vertigo, however another person the the MAV forum has recently been diagnosed with POTS. After researching a lot about it I’m very concerned. My second child was induced early due to my tachycardia and I have a slew of other symptoms. Is there a Dr. in the Charlotte, NC or Duke University Hospital System you would recommend to diagnose and treat? Thank you!!!
Hello Sabra,
The only doctor I know that treats pediatric POTS is Peter Rowe M.D. at Johns Hopkins in Baltimore, MD. Maybe you could contact his office and they may know of someone closer? Dr. Rowe is wonderful and compassionate. I hope this helps.
Sara
Hi,
I have just found this site by accident. I recognized the name Dr. Grubb as I was googling. I have identical twin daughters who were both diagnosed with adolescent autonomic dyfunction last March at MAYO clinic in Rochester, MN. The first twin is doing well, although she has strong anxiety, with the info we received from the PRC clinic there. The second twin is having a difficult time with headaches, anxiety/depression and brain fog. We live in CA and there is no one who I have found knowledgable on POTS and how to help us. The girls are 15 and anyone I have seen on the internet with possibilities doesn’t see teenagers.
Any suggestions? I have contacted the PRC clinic for assistance as well.
Thank you,
Laura, I have POTS also and I have gotten so much help here on this POTS support group. The difference that I see is that on this support group there are members who talk about not only all of their hard times but I got some fabulous tips from everyone else on the things they are doing that actually WORK for us to feel better! I’m going to print out your list of things that you are doing and take those into my new neurologist this week to see if I can incorporate anything additional into what I’m currently doing.
Welcome Laura, and thank you for listing out what is helping you! Sometimes I think we can learn more from each other than the doctors!
I am so glad to see some support groups finally active for us with POTS! I’ve had POTS for years (finally diagnosed up at MAYO in 2003). I’m a mother of three, former athlete, and a patient who is not completely satisfied with the approch from Mayo for the past 8 years (for me it was a ‘try this for a year, then come back’ approach as I am out of state), so I am finally in process of getting in to see Dr. Grubb. Here is they key for me as far a a feel good plan: 1) drink a lot of water (4 Liters a day-have a bathroom nearby!) 2) salt tablets – in my case, pressure drops with any activity, so this helps keep it up, take with food or they will upset your stomach 3) I take Midodrine (30mg a day) and Norpace (I have been through all the beta-blockers with no real help, but this one works! It keeps the heart rate more equalized – I’m on 300mg 2x daily) Thanks to my local electrophysiologist! 4) keep moving! My problems occur when I sit from being upright (quite backward) and I find movement is the key…but keep your stomach tightened- I strongly feel core exercises help us remain upright. Dizzy standing, cross legs and tie your shoe 5) small, frequent meals, low sugar, low carb 6) mindfulness (this form of meditation helps focus on the now and as some of us know, looking back at how active we were compared to bad days now can bring us down) 6) write lists – brain fog or short term memory problems are real and can affect us tremendously -lists or sticky notes help keep you engaged and on task. 7) stay away from video games/high resolution computer screens – there is a light sensitivity, especially during those down days/weeks and strobe lights, or any flashing lights can bring on symptoms 8) Exercise daily or try for three days/week. This is easier said than done. My blood pressure drops with exercise when I increase resistance, so I’m not able to go on a treadmill or elliptical or I will collapse. I am in cardiac rehab being monitored when I exercise – (a trial run of fludrocortisone mixed with midodrine caused a run of V-tach this year and landed me in critical care for two days) I do 20 minutes on the rowing machine at 40 watts, 20 minutes on a recumbent bike with no resistance. It gets easier the more you do, but when a collapse happens, be of the mindset that you may be starting from where you were the first time you tried and that’s ok, at least you are trying, right! 9) for those with kids – educate them on POTS – my high schooler is doing a research paper and found this site for me! my kindergartener can tell I am not doing well by looking at my face and often tells me before I know! 10) Always be your own advocate – keep copies of records, don’t be afraid to disagree or get another opinion.
Hi,
Thanks for this opportunity to ask questions about Dysautonomia and Postural Orthostatic Tachycardia.
Can Dr. Grubb go to other states and see patients?
I have a 12 year old daughter named Amanda who was diagnosed with POTS in May 2011. Her symptoms started in October 2010 and we have taken her to so many different specialists before anyone knew what she had. Amanda also has had frequent UTI’s with unusual bacteria. Could POTS have anything to do with people getting more frequent UTI’s? She has always had right side flank pain and burning urination with stomachache, but the quick urine dip test only shows things to be off by a little. It is when they grow the culture, that it always shows a large bacteria growth of a stubborn bacteria. Also, does muscle and joint pain relate to POTS? Her arm by her shoulder keeps hurting her when she is not doing anything to cause pain. She says she feels like it is out of socket and it only feels good if she holds it bent up. This is the second time this happened. Other joints and muscles bother her often.
Any info would be helpful. She is getting so depressed, because she is so sick of being sick all of the time.
Thank you!!,
Michelle
Thank You!!!! Thank You!!! You brought tears to my eyes!!! I have been recently diagnosed with POTS and have been besides myself. The one of the good things I have encountered is a physician that listens and wants to learn. I am going to print out your whole blog and pass it onto him, not to mention I will start doing things to better my situation via your blog.
I have so badly wanted to exercise and have read not to, although I dont think I can run just yet, but in reading you are running has inspired me into moving forward with light exercise and moving up. Before having POTS I was a Marathon Runner, Softball Player, Tennis Player, Bike rider and Hiker, and now I have been a trapped in the house, alone most of the day, reclusive, non active, Lump of Flesh. I have gained 50 lbs… Some of it was from my last pregnancy that just didnt want to shed, but then again to be honest I didnt have the energy to exercise it away.
I feel so inspired by your blog and ready to move on with my life and get off the couch and bed! Not to mention get CONTROL OF MY LIFE BACK!!!!
Thank you again!! Please keep in touch!!!
Sandie
Hi Stacy! I can completely relate to how you feel and the determination not to stay sick. I never thought that POTS could be related to environmental sensitivities, but I am a believer now based of my results that have taken only 5 months to accomplish. I can’t believe how much better I feel. I’ve taken the suggestions about organic eating and combined it with a no-grain (except oatmeal), no-dairy fat, and no sugar (incl most fruits) diet, also called an extreme Candida diet that contains mostly vegetables and lots of greens. I also had my allergist test my skin with real foods to eliminate food allergy triggers. I use natural anti-fungals, probiotics, digestive enzymes and hydrochloric acid for low stomach acid regularly and have found some supplements that seem to help with energy. I also have been following Dr. Levine’s advice on exercise and continue to increase the resistance in my program. I added a whole-house water purifier, changed to all natural shampoo/conditioner, bought organic sheets and nightwear, stopped wearing most make-up, brush my teeth with baking soda, rinse with HPeroxide, use all natural lotions, oils, and soaps, quit using plastic (I line containers with biodegradable wax paper), started cleansing with water enemas regulary, continue to take salt baths as I can tolerate them, and use all natural paper towels and toilet paper. I prayed like crazy to Jesus for answers, and this is where I believe he led me. It’s been only 5 months since I started making changes and I feel almost normal. I am now able to run for 30 minutes and I just biked in the Vermont hills for 2 hours this past weekend. I was diagnosed 3 years ago and there were times when I could barely even walk! I am not sure how your story will turn out, but I encourage you to decrease the stress and the toxins as much as you can – to at least give your body some relief. When things seemed bleak over these past 5 months, I would pray, listen, and wait. I am amazed at how God wants to lead us to healing. I hope this helps you and give you hope.
Hi, I am writing cause like many of the posts I have already read I am terribly frustrated…..though I have come along way. I have suffered from tachycardia since I was 19 which they labeled inappropriate sinus tachy {basically I have no idea why your heart beats so fast) or other cardiologist SVT. It was not until I was in nursing school that I began researching my symtpoms and the triggers or what helped. In 2006 I went to about my 10th cardiologist with my own diagnosis in mind of POTS. And yes it was confirmed with tilt table. So I was relieved that I finally had an answer. This entire battle (and yes it feels like a war between my body with its limits and my mind not wanting to listen to my body) has been 3 steps forward and 2 back etc…. I am currently taking Cardizem 240 mg, Nadolol 40 mg and Effexor XR. I know that I need to drink “boat loads” of water and/or gatrorade, avoid extreme heat and most certainly be careful including the shower, get enough sleep and don’t suddenly increase activity or demands physically. However life does not work that way. I am 35 and I would love to have children however my body can barely sustain myself. I do feel a bit of guilt as they believe my POTS was caused by my anorexia and severe electrolyte imbalance and dehydration so severe I was paralyzed for a day. I am stronger than before I know and I will and do fight this every day. I have the litanny of symptoms I have read everywhere; tachycardia especially with changes in position (one Er MD when I told him to put a holter monitor on me and have me stand and walk and watch my heart rate take off replied “Wow why does that happen???), muscle weakness in legs with increased sxs I call it “rubbery legs”, muscle fatigue and pain, extreme fatigue, insomnia, dry mouth (could be from meds trying to treat problem), dizzyness, passing out, flushing skin, itchyness especially before bed, sensitivity to meds (bizarre reaction), short-term memory issues or when an episode “brain fog”, need to drink gallons of water, increased urination (probably due to gallons of water), ……other ones I feel too crappy to keep going on. My cardilogist was following me then I seemed to stabilize on meds however over last few months I made a job change which includes getting up at 4:40 am (so decreased sleep), increased activity and because I am doing VNA work my bathrooms are limited so I have tried to limit fluids in am and then push fluids after I see clients. So last night yet another ER episode of going and asking for IV fluids tthey kinda look at me l ike I am meds seeking ….ya med seeking IV salt water. They only give me one liter and I am too tired and feel too crappy to fight them or more nicely put advocate for myself. I am home now feel no better than pre ER visits to tired to move. Tired of extreme fatigue and heart pounding out of my chest, tired of ERs seeing a young woman with increased heart rate and think “Oh its anxiety.” (ya I am afraid of heights and when I stand I get anxious!) just fed up want to be able to function day to day helping my clients but recently I can barely help myself. MY doctor will probably say push fluids but if you ever tried to rehydrate after severe dehydration you can only drink so much until you heear the ocean waves in your stomach (…nope thats the waves of gatorade, water and electrolytes slushing around) Someone please help, give me guidance or hope or faith….I almost died to anorexia and I WILL NOT have fought so hard to live to only sucumb to a result of the anorexia. God Bless and be well, and thanks for listening. Stacy
Deb, will get those list of labs for you posted up. I’ve had a sick dog this past week so haven’t been able to come online very often. I’m catching up on all the messages that I missed and will find Leigh’s list of labs to post for you and anyone else whose interested!
Welcome, H Jackson, any type of autonomic disorder is really challenging, but I’m very glad that you found us and I’ve learned TONS from other patients who are also here. I think sometimes we get all kinds of “excuses” as to why we don’t fit the mold. Whether it be because we’re not the right age, shape, or like you’re seeing race, patients like us must get the gold star of “excuses” from many doctors. I’m not Dr. Grubb obviously or from his office, but I do know Mayo will accept self referred patients, or at least they used to when I had checked into being seen there for POTS. There are also other centers where you can get autonomic testing done so if you feel comfortable sharing the state where you live, I’m also happy to check the list I was given to see if there are any POTS specialists in your state and/or area if you want to also list a city. You can also go to the Mayo Clinic’s website and call their 800 number and ask what you need to fill out to start the process of self-referring. It can generally take a while to be seen in their autonomic testing department, so it’s also a good idea I think to see either a backup plan so that if you need help sooner, you’ll have some options. Also, some people here have had good luck in getting on with Dr. Grubb’s Nurse Practitioner Beverly much sooner than getting on Dr. Grubb’s waiting list. And I’ve heard good things about those who worked with Beverly, Dr. Grubb’s NP, to get certain things moving and be in touch with a good resource. Hopefully, that will get your started on getting some help that you need. Let me know if you want names and/or resources of any other POTS specialists that may be close to you, and the most important thing is to trust your instincts and your body and don’t ever give up. I don’t care if you see 100 doctors who aren’t helpful. You just keep moving forward until you get the help you need. You live in your body and you know when something is not right. So keep up your quest to find answers. You’re not alone and most all of us know exactly how hard this is–especially at the beginning to find some solutions.
Hi I was diagnosed with POTS in Oct. 2006 and have found that no one wants to treat me because they don’t believe I have it, mainly because I am Black. I have been told numerous times that I am “atypical”. However, I believe I need to be treated for the condition and not my race. I have had numerous amounts of tilt tests and they all show the same thing. the reason for the numerous amount of tilt tests is to to keep seeing if I will faint, which I do, and then to be told again, it should definitely subside because Black people just don’t get this. I am told to take midodrine and that drinking salt water helps. Dr. Grubb, I would like to know how does one go about getting accepted into the Mayo Clinic POTS Clinic so that I can be thoroughly tested and evaluated. My family is willing to travel with me and I have great insurance I am just in need of some help. I am young and on disability, have been for five years now and I would really like some relief, answers, and for someone to care. Thank you in advance for your time and attention. Great discussion, very informative.
Hi Alaina,
That would be great if you could post a link to the list of labs that Leigh has recommended.
Thanks.
Deb
Re: What Type of Physician Should I see? (With Hashimotos and Autonomic Issues)
Hi Deb, sorry you have to be hear but very glad to have you join us. If you are going to make the visit to the Mayo Clinic, you can self refer by calling their 800 number and then getting a summary of your condition from your doctor to send to the Mayo Clinic. It can take quite a while to be seen there, depending on the urgency of your condition and the # of patients that they need to see. Generally, POTS patients are brought in through the neurology department so if you’ve already received a correct diagnosis of POTS, then you’d be seen as a neurology patient and go through the autonomic function testing that they provide.
However, once diagnosed, some patients say that Mayo Clinic didn’t have any magic answers to what has helped with POTS patients, beyond what Leigh has already shared and written here. Many patients do find that getting in touch with a good Doctor of Osteopath or a more holistically focused medical practitioner can help alleviate symptoms either while you’re waiting to see a POTS specialist. Have you seen a list of the labs that Leigh recommends? If not, let me know and I’ll post the link for you as that’s a really good start in terms of getting further information on things that could be contributing to symptoms.
Keep us posted on what else you need and how we can help. We have a great group of fellow patients here who are so supportive. Again welcome to our support group!
Hello,
I have recently been diagnosed with both POTS and Hashimoto’s, but none of my doctor’s seem to understand this.
I would like to make an appointment at the Mayo Clinic in Rochester, MN. What type of physician (specialist) should I see.
Thank you.
Thanks, Leigh, for the options on the thyroid meds. Great information! Just to clarify, Dr. Suleman has just helped me with the POTS. I see another doc for my thyroid. But speaking of Dr. Suleman, I recently went to a support group that his staff sponsors, and a woman who had been cured of POTS (edited by moderator) spoke. I took to heart what she said and started to put into practice what she recommends. I have been off (edited meds) for one month and my POTS is under control (not cured, but signficantly improved). Her website is http://www.healthynoexceptions.blogspot.com. She talked a lot about food sensitivities, detoxing, balancing the PH in water, eating more veggies, and purifying your environment. I am already amazed at how much better I feel. I can’t believe that I’ve been off meds for a month and so far not on the couch all day. I do find that chewing on seaweed every once in a while also helps my symptoms. In addition to her dietary recommendations, I’ve also been trying to follow more closely dietary recommendations for hypothyroidism. I’ve been detoxing using Bentonite (once a day) and a Bentonite body wrap once a week (and an occasional Epsom salt bath – a little hard to do, though). For additional colon detoxing, I’ve been eating beets and drinking homemade smoothies that contain flax seed oil, chia oil, and thick homemade prune juice. I use baking soda to balance PH in my bath and in all my water (using a PH strip to test). Also, I’ve been challenging my legs and core more in my workout – adding intervals and more resistance, taking a page out of the Levine protocol.
Long story short, I prayed for God to show me what to do about my thyroid medication issue and its imbalance with my POTS condition, and I really believe He led me to these solutions because my body is so sensitive to medication. So far I have seen great results and feel great! I should know more after a full 6 weeks off meds, at which time I’ll have my blood work checked, including my TSH. I’ll let you know how it goes, but check out the website if you have a chance. I wish you well also and will keep you posted on my progress!
Re: Armour Thyroid Meds and Other Issues
Mary, thanks so much for the update. Here’s a few thoughts for you.
1. I am not a big fan of the Armour thyroid anymore. It was great when I first took it, but the company changed the formula. You may want to let your thyroid doc know about this. Some doctors unfortunately didn’t know about this and when Forrest Labs changed the Armour formula about 2 years ago, patients were left in the dark. I would say the majority of the thyroid patients that I interact with in the thyroid support groups who have taken Armour or who are taking it now, are not having good results with it.
This doesn’t mean that Natural Thyroid meds are problematic, it just means that Armour now has been changed so that for some reason it is no longer the first choice like it used to be for treatment of the thyroid.
2. Right now in my opinion, there are 3 other choices for Natural Throid that are much better than the Armour.
a: Since you already have the Armour thyroid prescription, an easy way for you to try another thyroid med is to go to Walgreens (not sure if you use Walgreens or another pharmacy, but Walgreens has a generic Natural Thryoid med, that they can substitute for the Armour Thyroid) You have to tell the pharmacy clerk when you call them that they will look up this medication in their system under the words “Thyroid” and then double check to make sure that it is Manufacturer Acella. I had to ask the people working at the Walgreens in my area to look this up 3 times for me, because they kept telling me they “didn’t have it”. But I knew they did because a friend of mine got her prescription filled at the very same pharmacy the day before..ugggh it was amazing that I kept getting someone telling me the didn’t have this thyroid medication.
But once they “found” it by looking it up under “Thyroid” and then I verified that it was the Acella manufacturer medication that they had…I had no problem getting my prescription filled with that type of Natural Thyroid. The Acella brand does not have any cellulose in it and my theory on this is that because of the cellulose in the new Armour, some of us aren’t able to absorb it and have more trouble than with the old Armour formulation.
b. A second option is to ask for NatureThroid, but that would require a new prescription from your doctor, so if you have a Walgreens in your area, probably the best thing is to try the Acella brand Generic Thyroid first, and use this option (NatureThroid) as a backup. Naturethroid also has cellulose in it, but seems to work better than the new Armour. I still like the new Acella thyroid (probably a little more at this point than I do even the NatureThroid so for my thyroid meds now, I am using the generic Thyroid made by Acella.)
c. a third option is to order the Erfa Thryoid from Canada. This one, is also a natural thryroid med, and also has no cellulose in it. It’s more expensive than the generic Acella thyroid that you can get in the US, and you have to order Erfa from a Canadian pharmacy. So I’m leaving that as #3 on the list.
2. Moving on, it is absolutely important for someone to run a full iron panel for you, including your ferritin. What happens is that if your ferritin is too low, the thyroid hormone can’t get into the cells properly, and this can cause some problems in being able to either take thyroid hormone or be able to raise it. So that’s really, really critical. Remind me please also if anyone did a Reverse T3 lab test when they ran your thyroid hormones? That’s another test that is sometimes missed and really important. And that one can cause issues with your heart rate if it is elevated and no one bothered to test it!
3. I don’t agree with Dr. Suleman on the dry mouth issue. See, I had/have a lot of the same symptoms re: dry mouth, dry eyes, and my neuro at the Mayo Clinic diagnosed Sjogrens. You don’t always have to have positive antibodies to have it. And your having Hashimotos, as do I, makes us more predisposed to other auto-immune issues.
One thing with your antibodies being so elevated, it would be important to try to keep your TSH supressed which means, keeping the TSH as low as possible. I can’t function unless my TSH is way below 1, almost like they would keep a cancer patient’s TSH. This helps minimize the auto-immune attacks, but you can’t just raise the thyroid without checking on the ferritin and Reverse T3.
4. Adrenals are also very important and most thyroid patients cannot raise their thyroid hormones unless adrenals or adrenal stress is addressed first. If you want more info on this, let me know. The best way to test adrenals is using a saliva home test that you can order yourself from ZRT labs. It is a 4 time a day saliva test that measures your cortisol levels, and the saliva test for cortisol is even more accurate than the one time morning blood draw for cortisol, because with the saliva test, you are able to see how your body responds over the course of the day–not just one time like they would do with an am. blood test. There are many folks with adrenal problems that were missed for years and years, because all that was ever done was a one time am. cortisol draw, and no one bothered to test the cortisol levels during the day/evening 4x a day is the standard.
Again, if you want more info on the saliva test from ZRT, let me know and I’ll post a link for you. I also have a good book that I can list if you wish about Adrenal Fatigue that may be helpful for you to read.
I think Dr. Suleman is a great doc. And having said this, just know that in my experience there wasn’t any one person or medical doctor who could put ALL of my medical pieces together. For example, Dr. Suleman was great to confirm the POTS diagnosis for me, but on the thyroid issues I had to figure some of those issues out on my own. Which was fine, he’s a cardio electrophysiologist, not a thyroid doc. Actually I saw Dr. Suleman myself before I went to Mayo Clinic. He was amused because I showed up and said that I thought I had POTS and wanted him to confirm it. LOL. Which he did, but I had other issues going on other than just the POTS so I went to the Mayo clinic shortly after that visit to get the rest of the testing done and address some of the other things. But I really liked Dr. Suleman’s entire staff and back when I was there, they had a GREAT GREAT nurse practitioner. I think her name was Kelly Hammonds. She took so much time with me and was quite knowledgable and caring as well. Do you by chance know if she is still there?
There are quite a number of patients who do well adjusting their diet and sometimes gluten free can also do wonders. And some like yourself also find success with the Candida diet also. Sugars seem to be a big trigger for tachycardia, and keeping a diet and symptom journal was also really great for me to be able to track and manage my symptoms.
So I hope that gives you some idea on what other things to look into. Feel free to ask any question at all. I do know how it feels to be in the “thick of things” and how frustrating it can be. Keep me posted also if you don’t mind on you progress. The salt and fluids is something that I have to keep up with as well. And I find that having coconut water (the plain type) helps me also because as cardiologist, Dr. Mehmet Oz says, “coconut water is the perfect electrolyte”.
Leigh, just to give you an update, I tried the Armour and my heart rate was significantly higher than it’s ever been just off of a 15mg dose. My new TSH on 50mcg of Levoxyl was 1.55, but my HR is too high on that dose as well. We’ve been tracking my HR responses to all thyroid meds at various doses, and my doctor agreed that I am highly sensitive to the meds. I went to my cardiologist to make sure there was nothing going on with my heart and there is not. Our plan is to go after the POTS. I’m going to try the Levine exercise program and increase my salt. I haven’t been measuring salt and fluid lately so I need to get judicious about that.
What do you know about medication sensitivities and POTS? What causes this?
Leigh, I saw my thyroid doc yesterday and he is starting me on Armour 15mg twice a day. I am very glad bc my heart rate has been climbing on the Levoxyl 50mcg (this morning it was 123 upon standing). We are also doing a basic iron test again bc I am concerned that I might have been on supplements the last time I had my iron checked. I totally forgot to ask him about the full iron panel and even had it written down! I’ll ask him next time, though. He did not buy my formula that Hashimotos+POTS=dry mouth=Candida and thinks I have an underlying condition. I read a medical textbook on oral pathology and based on my medical history and symptoms, I could not find another possibility, unless anemia shows up. I brought up Addison’s but don’t believe that’s the issue either. Nevertheless, he agreed that it was a good idea to check. My last pituitary MRI was in 2009 and it was normal. I did other testing that year for Addisons and nothing came up. Things can change, though.
One thing we did discuss though was whether or not the underlying issue is the medication or if the medication stabilized a heart that was previously supressed by untreated hypothyroidism. Now that my heart rate is stabilized through medication, we may be seeing an accurate level of the POTS. I hope this is not the case. If it is, I will need to be reevaluated and get a new protocol.
As for exercise, my cardiologist has an exercise physiologist on staff. The program is pretty specific, more than I can explain here. My doctor is Dr. Suleman in Dallas and his assistant is Rachel. I am sure they would help you long distance. The staff there is extremely helpful and commited to helping society understand POTS. The main concepts are lateral exercise (less stress on the heart; however, I tolerate the lateral bike well which is upright.), maintaining the heart rate at a certain level, and weight bearing exercises for core and legs to prevent pooling. They do suggest resting a day after three days of training as well as intermittant light days of cardio. I have not gone through their full program but followed their plan for 3 months.
The Candida diet seems to be helping. I had an outbreak of ulcers last week, but I did not get on medication. The ulcers were quite mild and did not require treatment. They went away on their own. I am, however, going to do a Candida skin test to test for the Candida antibody. My plan is to wait to see how I feel 2 months from now on the Armour and Candida diet before persuing any further testing for underlying causes.
How are you doing?? – Mary
RE: How Diet and Exercise Can Help Dysautonomia
Mary, thank you so much for the update on how you are doing. And that is great, great news. I am very happy for you that you are feeling better. I think it is well worth discussing for all of us what a difference diet can make. You know there are many doctors who say the pharmacy is really at your supermarket! That is, if we can choose fresh, organic, healthy foods which are not processed. I’m very thankful that you brought up the Candida diet–that would be so worth it for folks to try who are dealing with dysautonomia, and/or I have also heard some have very good success with a gluten free diet. Even if they do not test positive for Celiac. I know for myself sugar is a big trigger for any kind of enhanced tachycardia, so I avoid it unless I’m consuming fresh fruits. And even then I try to combine fruits and protein so as not to get “pure sugars or pure carbs from the fruits” all at once in my system.
On the thyroid specialist, let me just say that I hope you have better results with the doctor you have chosen to see than what I did when trying to find “an expert” on thyroid problems. Most of my most discouraging moments during my journey was with endocrinologists (ie: Thyroid Specialists). When it was all said and done actually the endos whom I saw at major medical centers like MD Anderson and others not only were not helpful to me, but gave me incorrect or uninformed information and were not up to date with some of the most helpful information that was already published about the thyroid for example, that discussed how patients actually do better on T3/T4 combos then simply T4 alone. That’s why I think it’s important for anyone with a co-existing thyroid disorder to read some of the literature that’s been published and to read up on some of the thyroid books, especially those published by MD’s just so that you can get a sense of the fact that there are differing opinions on how to treat thyroid disorders. Most endos get a good education on how to treat diabetes, but for me weren’t helpful on managing my thyroid after it was removed. I had much better luck using a family doctor who was willing to read and learn about ways of managing the thyroid that actually helped me to function better, and not simply listen to a pharmaceutical representative pushing their particular brand of synthetic thyroid medication.
Bottom line in my opinion, for all of us is that the body is capable of healing from many health challenges, if we can support it and listen to the signals we get from changes we make. Dietary changes like your Candida diet can be significant–and how much of a blessing it is that you’ve shared how this change has impacted your health! Those signals that you get when making changes like this are every bit as important as what you may be told by an “expert”. Because when it comes down to it, with POTS, there is a great deal that is stilll in the infancy stage and all of us as patients are really the ones who are experts on our own bodies and can hopefully help others in the future by documenting what works and what doesn’t. I know that’s what Mayo Clinic is focusing on. They are actually interviewing past patients and asking them what has been the most helpful interventions that they’ve implemented for dysautonomia. Thank you so much for your sharing. And if you get a chance I’d love to hear more about yoru exercise plan that the exercise physiologist gave you.
Jennifer, I saw an exercise physiologist supervised by a POTS specialist, and she helped me a ton. My symptoms were just like yours when I first started, but she gave me a specific workout designed for POTS patients that carried me my entire first year. I had a recent setback with Candida, but if you follow my thread, you can see that I am getting through that as well. I am not sure if Candida diets help most POTS patients, but I am amazed at the difference. With mine, I don’t eat any wheat or dairy and barely anything that resembles sugar or turns to sugar. I pray a lot about my condition and it seems that God is always sending me to what I need. He will do the same for you. I wish you well.
Leigh, I started a very strict Candida diet (with even less sugar than many Candida diets recommend) and can tell a huge difference in my energy level. I am still going to see the thyroid specialist and ask the questions you recommended. But I am amazed at how different I feel. Thanks for all of you input!
Re: New Diagnosis of POTS – Dysautonomia
Jennifer, Welcome to our Autonomic Dysfunction support group. Although I know it can be overwhelming to get the Diagnosis of POTs, I remember for me it was also a relief. Just knowing that there was a name for the symptoms and reason for it was in some way comforting.
In most cases Jennifer there are some things that could be contributing to the POTS condition that are not always checked or considered by physicians.
Do you know what labwork has been run? Specifically have you had your Vitamin D, 25 Hydroxy checked? This is the correct Vitamin D test that should always be run on all POTS patients. Along with a full thyroid panel, the one I recommend is much more extensive and a better way to measure thyroid function than what is normally ordered if the physician is not familiar with thyroid disorders. Also, Vitamin B12, ferritin, along with a full iron panel. These are some of the more important ones. If you need a list let me know and I’ll list out the specific labs you should ask for. The good news is that many of us can and do either recover or make significant improvements. The hard thing is that most likely you will have to become your own advocate for care and learn more than you ever wanted to know about labwork etc so that you can make sure that you are getting the proper labwork which can identify other issues which can exacererbate the autonomic dysfunction if not checked.
I have been undiagnosed for 3 years and recently got diagnosed with POTS. I’ve gone through a rough time, and half the time I thought I was crazy. Recently, the POTS is getting really bad. My blood pressure is 78/45 with my heart rate in the hundreds. I’ve gone to the emergency room countless times. All they do is give an IV and send me home. My body is just getting weaker and I can no longer go to school or be with friends. In fact, I can barely stay awake. I am pushing salt and fluids like nuts! I’m also taking salt tablets but nothing is helping. I’m constantly moving my legs and it’s getting hard just to walk to the bathroom. I don’t want to end up relying on a wheelchair, but it’s pretty much getting to that point. My cardiologist is making me drink 98 ounces of water. It’s really hard considering how little I’m awake throughout the day. I’m trying to stay strong, but sometimes I just get so depressed.
Everyone with POTS has different symptoms. Here were most of mine:
Dizziness (increased with position changes)
Fatigue
Memory loss (short term)
Nausea
Stomach pains
Fainting
Weakness
Depression
Pain in shoulder joints
Headaches
Blackouts
etc. (I am so tired I can’t remember them all)
I am going to start homeschooling, since public school is physically impossible for me to attend regularly. However, I don’t want to become unconditioned to a little physical activity. I was wondering if you have any advice about what I can do. I need to lose about 10 pounds to be back on track but P.O.T.S is making extremely difficult to do anything. Taking a shower is a task in itself. I sleep most of the day. I absolutely need at least 12 hours of sleep every day. Another thing is I’m not sure if my family should invest in a wheelchair so I can actually go places and outside again. I love the outdoors!
I say go for the investment in a wheelchair. I have almost the exact same symptoms as you and just had to take a leave from work to try to get better. I’ve had this syndrome since I was 12, but only got diagnosed last month just after New Years. I had a little break in the exhaustion last year for maybe six months. Even though I was still struggling with episodes, I could again venture outside. I grew a garden. Put in over 100 hrs volunteering for my community and saw all of my family and friends as often as they would let me. Supermarket shopping was still out of the picture, but I decided to try to live as much as I could before it was taken away again. I look back on that time outside, in the dirt, sitting on my patio, collecting vegetables from the garden, smelling the early morning breeze with great foundness. I know now that life may not be as I envisioned it at 28, but I’ve very grateful for what I have and now I have a reasonable goal.
Oh and by the way, the shower and stairs are the bain to my existence now… My migranes lasted for 3 yrs and just started to be relieved by nadolol.
Hope they can figure out something for you soon!
Thank you, Leigh, for the information. I am open to natural thyroid meds if I continue to feel bad over the next month. From all of your helpful information, I plan to set an appointment with a well-known thyroid specialist here in my city and can run everything by him to set the best course of action. Also, I will have my recent T3 and T4 tested again on my new dose, which I didn’t do. I will also ask for a full iron panel to include the areas you mentioned. Do you think I should have my antibodies checked as well?
To answer some of your questions, my Selenium level is 205 (100-340), B12 is 786 (250-1100). I have a wheat allergy, so my diet is wheat free and gluten free. I am also dairy free and believe to have an allergy to coconut because I tried to use it as a lotion and it broke out my stomach. I take a minimum of 1000mg of food-based vitamin C daily and 1 capsule of fish oil (whole foods brand) daily. I just added flax seed oil (1tblsp) and flax seed (1 tblsp) to my regimen. I also take zinc, excellent probiotics that help tremendously with my digestion, calcium, magnesium, iron, chlorella, singulair for asthma, HBP allergy, and olive leaf extract as needed. For my recent outbreak of oral candida, a friend suggested that I add folic acid and L-lysine. I also started taking Colostrum to help prevent the candida from reoccuring. I take so many supplements already, so adding anymore seems a bit overwhelming, but I do want to feel better. Please advise. If you recommend me cutting back on anything, please let me know. Thanks!
Dry Eyes, Dry Mouth Help – Mary I forget to add that I get some relief from both dry eyes and dry mouth by taking a good quality fish oil supplement each day. Are you by any chance taking a good fish oil? I also add coconut oil to my smoothies or take some with Vitamin D and that not only helps the D get absorbed better, but can also be thyroid supportive and help with some of the dry eyes, skin, mouth issues of Sjogrens.
Hi Mary, Just saw your TSH level. Thanks for posting it. Yours is much too high for someone with Hashimotos.
Most Hashis patients are going to have a better chance of keeping the antibodies at bay and feeling better if the TSH is totally supressed. That usually happens naturally when one is on an appropriate dose of natural thyroid hormones (also a prescription medication is needed) as compared to a synthetic thyroid medicine like Levoxyl.
Re: Labwork Info for Mary
Hi Mary, Thank you for posting your labs. Here’s some comments: First, when talking about “Normal” thyroid levels, most people, especially those with Hashimotos or other autoimmune disorders will not only feel miserable if their thyroid levels are not OPTIMAL, but the antibodies generally will continue to stay at high levels or go up and cause further problems.
FT3 3.41 (Range of 2.39-6.79) *** Yours is too low – ideal is at the top of the range
Most people do not feel well unless FT3 is at the top of the range, and because you are on a synthetic thyroid medication ie: Levoxyl that is not suprising, because Levoxyl is only providing your body with T4 which is the inactive form of thyroid hormone. In healthy people the T4 is converted to the “active” form of thyroid hormone which is T3, so that’s why it makes little sense for those who aren’t converting well to stay on a synthetic thyroid hormone. Of course, most docs including the endocrinologists get their thyroid education about thyroid meds from the pharmaceutical reps, who push synthetics on everyone because they are not only more expensive, but they do not work as well most of the time for thyroid patients.
Thyroid Peroxidase Antibodies 326 (0-34) This is also very high, but you already know that I’m sure:-) I have seen antibodies come down and symptoms reduced if the appropriate type of thyroid hormone and dose is given. Most of the time in my experience these do not come down on synthetic T4 only thyroid medications which you are taking now if you are on Levoxyl.
Free T4 97 (0.58-1.64) – Most will feel best if this is at least midrange – Yours should be a bit higher on this as well. At least 1.4
Your D level is ok, could be just a bit higher, I like to see them around 70-80 for maximum protection of the immune system etc.
Vitamin B12 should definitely be at the top of the range, yours is too low. Are you supplementing B12 at all and if so what type?
Let me know if your TSH levels came back yet, but the ideal scenario for anyone with Hashimotos is to have TSH levels totally supressed like they would do with cancer patients. In supressing the TSH the body isn’t working so hard to make thyroid hormones and thyroid specialists who practice integrative medicine say that keeping the TSH supressed is very, very important. If left unchecked you can have not only continuing symptoms but antibodies that go on to attack other areas of your body.
Other auto-immune conditions like Sjogren’s can worsen if the TSH is not supressed.
A few other things that may help.
Next time you have blood drawn: insist that they run a full iron panel
Including: Serum Iron, TIBC, and ferritin also get a regular CBC with that so that you have numbers on your RBC. If you have your CBC numbers feel free to post them and I’ll give you feedback on those if you had them done recently
By the way, my DH used to get up many many times during the night to use the restroom also. This has stopped completely since he started taking natural desiccated thyroid hormone medication because he also has a thyroid problem.
For you, it may absolutely be helpful to find a knowledgeable doctor who can prescribe you a natural desicated thyroid hormone. If you want more feedback on types available, let me know–happy to share.
If you have never had adrenals tested, that could also be useful. Have you ever been tested for Celiac, or have you tried gluten free? Some, not all with Hashimotos may also do better trying gluten free, even if they have not tested positive for Celiac disease. You may also want to speak to your doctor about magnesium, (glycinate or gluconate is best) adding in Vitamin C several times throughout the day to support adrenals, and perhaps even some selenium because that can also help with the conversion of T4 to T3.
With symptoms like yours though, the first thing I would suggest is finding out if you are going to be open to trying natural thyroid hormone. That has been life changing for so many people, including myself. If I had stayed on Synthroid I think I would probably be bedridden by now.
With proper management of the thyroid allergies can sometimes also be helped, and things like getting a local honey from your immediate area can also be useful.
Leigh, I just got my TSH results today. The level is 1.55.
Thanks, Leigh! I just had my TSH checked yesterday as a follow-up to a dose increase and should have those results in a few days. In the meantime, my Thyroid Peroxidase is 326 (0-34), Free T3 is 3.41 (2.39-6.79), Free T4 is 0.97 (0.58-1.64), 25-Hydroxyvitamin D is 63 (30-100), B12 is 786 (250-1100). I have never had my ferritin levels checked.
I recently had a second outbreak of oral thrush as well. As a result, I was just tested today for Sjogren’s and had blood drawn for an immune system workup. To date, though, Sed rate is a 2, absolute neutrophils 2984 (1500-7800), and absolute lymphocytes 1860 (850-3900). My dry mouth, despite substitute saliva and Biotene toothpaste, is substantial. I would love your feedback. Thanks!
Re: Heart Rate Question
Hi Mary, welcome to our Postural Orthostatic Tachycardia Group. I too have Hashimotos and used to have major issues with keeping my heart rate at a tolerable level.
You mentioned that your lab work was “normal” however, what I have found is that normal and optimal many times are quite different. Do you happen to have copies of your labwork which lists your thyroid labs?. Do you know if anyone has ever tested your ferritin level, Vitamin D3, Vitamin B12 and the Free T3 and Free T4 Levels for your thyroid? If you have labs which you’d like some feedback on you are welcome to post them here.
If you do that please list your lab result along with the range,
For example
TSH 1.3 (Range .5- 4.5) etc
Let me know a bit more information and would be happy to share some things that have helped me.
I have POTS and can’t get my heartrate to stay under 100bpm. It ranges from 100-120 while standing or walking. BP is normal 90-100/60-70. Salt intake of 5000mg and water seem to manage dehydration. I use lemon water and juices to help manage electrolytes. I workout daily with cardio and weights, including legs, and strive to keep heart rate btwn 120-140 after warmup and before cool down of cardio. I have Hashimotos and am managed on Levoxyl. I am fatigued througout the day and have stopped working. I tend to have to use the restroom at night 1-4 times per night, but even a good nights sleep doesn’t stop the fatigue. I am using HBP med for allergies and Unisom (doxilamine succinate) for sleep. Labwork is normal. Any thoughts on enhancing stamina and decreasing heart rate?
Leigh,
Thank you so much for your prompt reply. Here are my test results, I was told everything was “fine” but don’t know exactly what all the items are.
Cholesterol 194, HDL 49, Triglycerides 135, HDl risk factor 4.0, LDL 118
WBC 6.5, Gran# 4.0, Gran % 62.0, HCT 43.0, HGB 14.0, Lymph# 2.1, Lymph % 32.9, MCH 29.5, MCV 90.6
MCHC 32.6, MID# 0.3, MID% 5.1, PLT 322, RBC 4.75, RDW 13.8
Albumin 4.3, ALK. Phos 102, ALT (SGPT) 18, AST (SGOT) 18, BUNNEW 8, Calcium 8.8, Chloride 103.4
Creatinine 0.7, Carbon Dioxide 28, Glucose 95, Sodium 142.8, Total Bilirubin 0.90, Total Protein 7.1
Potassium 3.49, Globulin 2.8, A/G Ratio 1.5, Bun/Creat Ration 11.4, GFR(Non Afr. American 87,
UA Dipstick: Glucose-negative, Bilirubin-negative, Keytone-negative, Specific Gravity < or = 1.005
Blood-negative, PH 7.0, Protein Negative, Urobilinogen 0.2 ED/dL, Nitrite-negative Leukocytes-small.
I am going to begin adding vitamin D. Which additional tests do you suggest?
It almost always takes me 4-6 weeks to come back from a Pots episode with the fatigue lasting much longer than the other symptoms. I am afraid that I feel so well for a year or 2 and become complacent with the fluids. I also tend to have high blood pressure when feeling well…..
Thank you so much again for your advice.
Hi Marianne, thank you for your question and thank you for joining in on our POTS and Dysautonomia discussions.
In terms of fatigue, I think that if fatigue persists, that it most definitely should be investigated further, and for almost all of the labwork that has been submitted for comparison purposes of other POTS patients in our group, there have been elements in their labwork that could potentially explain some of the symptoms that are attributed to POTS. It’s my position, that we shouldn’t just accept that fatigue is normal or to be expected just because we have a POTS diagnosis, because oftentimes there are clues within the labwork, especially if you make a list of the specific tests that I’ve mentioned and take that list to your local doctor. It’s my experience that you might have to be assertive in pushing for those exact tests to be run, because some physicians will simply want to run the standard Complete Blood Count test and say everything’s “fine” instead of investigating reasons for the fatigue that may be contributing to the problems we experience with POTS.
In terms of your question regarding whether waiting 4 weeks is a reasonable time to wait before expecting results?
A: My take on this is that 4 weeks is too long to be facing debilitating fatigue, and that the labs mentioned along with others that your doctor may want to run would be appropriate to discuss and follow up with yoru doctor about.
B: Can POTS change or worsen over the years? I think some of us experience ebbs and flows with POTS, but again, sometimes not everything is because of POTS. There are patients with POTS and other disorders like chronic fatigue, Lupus, thyroid problems etc, that may be in limbo for years, thinking that there is nothing they can do to feel better, where in most of these cases, if symptoms are worsening sometimes there is something that is contributing to that issue that may or may not be related to the primary diagnosis.
C: If you’d like to post your blood work Marianne, I’d be more than happy to look over what was tested if you wish. Sometimes the regular blood work is not enough —thus the need for more specialized testing, but often times there are clues within the blood work that is done that can show some signs that are useful.
We’re all in this together Marianne, and there are many things that we can all do to improve our outcomes. Lots of great people here on this board and glad that you posted your questions.
Hello,
I was diagnosed with Pots about 8 years ago by Dr. Italo Biaggioni at the Vanderbuilt autononmic dysfunction clinic. I was told that I needed 8-10 grams of sodium daily, 8-10 glasses of water daily, and the prescription florinef. They also mentioned that I had catecholamine release.
I have done very well over the years with symptoms returning 6 or 7 times and usually when I became complacent about drinking. For the most part I have been living a fairly normal life but when the symptoms return they are overwhelming, particularly the complete exhaustion.
I have seen a wonderful cardiologist at the Mayo Clinic in Jacksonville, Dr. Fred Kusumoto who calls my return of symptoms, the “Pots Hole”.
For the past 4 weeks, I again have been suffering with this debilitating fatigue. I have increased my salt and fluid intake considerably but have not seen any change over 4 weeks and am unable to return to work.
I sit up for the majority of the day, move around the house as much as possible and do not seem to have any tacchycardia or blood pressure dropping.
My question is this:
What is causing this extreme fatigue? I have recovered from this before but 4 weeks with no change is really beginning to worry me. Is 4 weeks a reasonable amount of time to expect results when that has been about the time span of relief of other episodes? Can Pots change or worsen over the years? I have recently had bloodwork done but will investigate some of the tests you mentioned.
Thank You so much,
Marianne in Hilton Head S.C.
Rebecca, thank you for answering my other question. After reading and reading—there’s so much to try to digest. I think that I want to know more about supplements like magnesium for example. I read that magnesium can lower the heart rate, yet why don’t doctors try that instead of putting us on beta blockers for example? If magnesium is good for POTS how much should we take per day?
Hey Rebecca! I’m assuming you are the one who posted this article since you are going next week?!
The questions that come to mInd immediately is- what are his thoughts on dairy intolerance in POTS? Dr Rowe believes that is a big contributor in patients with stomach problems like me. I am trying to get off dairy. Made a huge leap a few days ago & today feels like I’m having withdrawals
but I’m still sticking with it
Also, a lot of research says most teens who get it grow out of it by early twenties. What happens if you get to mid-twenties & aren’t better, is all hope lost?
If I think of any more I’ll let you know!
Hello Rebecca, I’m a new mom and just exhausted all the time. A few weeks ago I was told that I have POTS so on one hand this could explain my total exhaustion but on the other hand it is hard to think about.
I have two questions for Dr. Grubb. I hope this is ok.
1. Do you see an increase in POTS diagnosis shortly after a pregnancy? Or during pregnancy
2. With regards to exercising with Postural Orthostatic Tachycardia, is it dangerous to do too much? Like I know I’m supposed to keep my heart rate within a certain range, but I don’t feel as if I can exercise at all if all I’m doing is worrying about my heart rate staying low. So does Dr. Grubb think it’s ok to exceed the maximum heart rate as long as I’m not passing out and if so how do I know what is too much?
I’m sorry if that’s too many questions but I’ve been wondering about these things because my regular doctor hasn’t been much help. I’ve been just reading the other section here on this site where you all talk about things that helped you but when I saw these questions I thought I would ask. Thank you for reading.
Thank you so much for contributing your questions. My appointment will be Wednesday March 2, 2011.
Please continue to post questions and spread this link.
I am excited to have this opportunity to visit Dr. Grubbs office and to ask your questions!
RE: Question for Dr. Grubb
I’d like to know if he has tried any patients on compounded B12 (methylcobalamin) injections, or if not, would he be willing to try that in patients for whom it’s use would be appropriate?
Hi, I saw your post from another board and I would like to know from Dr. Grubb if he knows any new supplements or medications that could help POTS patients that haven’t yet been written up in the literature?
I was also sent a link to this post regarding questions to ask Dr. Grubb, so I would like to know if Dr. Grubb sees a link between immune system disorders and POTS and if so what he suggests that patients do to correct immune system problems?