Postural Orthostatic Tachycardia Syndrome or POTS as it is called is a disorder of the autonomic system that causes an elevated heart rate or tachycardia when  changing position. For POTS patients their heart rates may increase over 30 beats per minute when going from sitting to standing. So the body isn’t responding appropriately to changes in position.

After a long, arduous road of being misdiagnosed and not diagnosed, I ended up at the Mayo Clinic in Rochester, Minnesota part of one of the top Hospital and Health Care Systems in Minnesota,  and they confirmed my suspicions. I had POTS and the troubling symptoms that accompanied this disorder were not “in my head” as I had been told by numerous doctors in Austin and hospitals in Texas who not only lacked knowledge about autonomic disorders, but who didn’t acknowledge to me that there obviously was something very wrong, but they just didn’t know what it was. It is a terrible disservice to patients’ to dismiss, belittle, or blame the patient for a condition that the doctor cannot diagnose. And this is something that unfortunately happens every day.

Now, onto more positive thoughts. The first step towards recovery is getting a proper diagnosis. Once you can identify the problem, you can stake steps to fix it. As a Mayo Clinic patient and a POTS patient, I was enrolled in a Mayo Clinic study coordinated by researchers who have spent many years studying autonomic disorders and learning what works and what doesn’t in terms of treatments. A few days ago I received a call from the Mayo Clinic. They wanted to know how I was doing, but even more importantly, wanted to know what I had done that had helped me get better. Can you imagine how much better our healthcare system would be if more clinicians simply asked their patients, “What has worked for you?”   None of us know everything, and even in the field of medicine where many times it is driven by either lack of time to properly examine the patient, lack of knowledge, or simply ego, there is always room for both physician and patient to learn from one another. One of the things that Mayo Clinic  is doing with regards to their research on Postural Orthostatic Tachycardia Syndrome is that they are following up with their past patients. And they are asking these questions. What are you doing now that works? Maybe we can use this information to help others.

And so, for my readers,  I decided to post some tips online to document some things I’ve found to help with POTS symptoms. Things today are so much better than a few years ago, and I hope if you take at least one message from reading this today, is that no matter what your condition or diagnosis is, there are always things to help in some way. Maybe not cure, but there’s always something that can be done for every condition you are facing. In some cases it may be some adjustments to make your day to day living easier, others may have improvements, while sometimes it may be simply making someone more comfortable.

POTS-things-that-help Here are my tips for Getting Better With POTS: What I Did to Improve My Autonomic Condition

Fluid Balance:

1. Increase Fluids (never get dehydrated) I bring drinks everywhere I go. In the car, shopping, at the gym, in a meeting. I’m never without some liquid as staying hydrated helps with blood volume, reduces tachycardia and just overall helps me feel better.

2. Drink Fluids with Electrolytes in them. (Mayo Clinic suggested Gatorade, I don’t like the taste of Gatorade and find it has too many calories in it for my needs.) So I use something like a calorie free electrolyte drink. There are many new ones on the market now, review your labels before purchasing.) I like Costo brand  Vita Rain with B vitamins, but there are others on the market. Some of the brands can be expensive. I like the Costo brand because it’s affordable and it works for me, and it has zero (0) calories!

3. Exercise Leg Muscles: Mayo suggested exercising leg muscles and buying leg weights to particularly strengthen the lower legs (I did this at first but now run and find that the running helps me stay fit and as conditioned as I possibly can, and builds strong leg muscles.)

4. Use an Abdominal Binder: I don’t use this anymore, but found it a very good help for getting back into exercise, and I particularly liked this one because it was larger around the middle, but it comes in different widths so be sure to order the one that will fit your body and give you the amount of support in the abdominal area that you’ll need.

5. Add Salt: Mayo Clinic suggested I use salt tablets but they are too harsh on my stomach and make me nauseous so instead I add a good high quality sea salt to my food, or add some high quality sea salt to some water to drink it when I need more salt. It’s funny when I go to a restaurant and reach for the salt shaker. Some people look at me with horrified eyes, then I explain that I’m actually supposed to have more salt.
We’ve become such a health conscious society that everyone thinks that adding salt is unhealthy. But for POTS patients, most of us are hypovolemic  which means we have low blood volume and adding the salt can help with this problem and keep us feeling and functioning better. Note: my low sodium was never picked up by any of my initial doctors whom I saw in Texas and who missed my diagnosis because no one ever did a 24 hour urine sodium. The Mayo Clinic was the first facility to order this test and thus it was identified there that adding sodium to my diet would be helpful.

Things I learned About Tips to Help POTS from Personal Experience

5. Fidget: Cross your legs when standing in line and/or fidget. If you think about it, fidgeting keeps the blood moving and can help with making staying upright more comfortable. Staying completely still is uncomfortable but if you can move around a bit it can help prevent dizziness and some other symptoms.

6. Check Endocrine Issues: For my situation, checking the thyroid and getting any other endocrine issues was crucial.  I also had Hashimotos which is an auto-immune thyroid condition which caused a large goiter, that by the time I made it to the Mayo clinic,  was compressing my vocal cords and esophagus, but dear readers, remember I had been told by numerous practitioners including the nurse practitioner at  the University of Texas  M. D. Anderson In Houston, Texas,  a Texas Hospital, that there was “nothing wrong with my thyroid.”   So, my situation with POTS was simply exacerbated by the thyroid issue. Had I been given an appropriate dosage and treatment earlier on, with a natural thyroid hormone, because natural not synthetic is the only kind of thyroid medication that works for me, possibly I would have not needed the removal of my entire thyroid gland.

7. Keep a journal of your symptoms. Document what works for you and what doesn’t so that you can become the “expert” in your own care.

8. Trust yourself. If you are prescribed a medication and you know it makes you feel worse, I absolutely believe you if you say this is the case. Don’t let anyone, even your own health care professional pressure you into taking something that you know makes you feel worse. If you have to take a medication that is needed for some critical reason like a diabetes medication or heart condition, or some other condition that you need a medicine, and that medicine makes you feel worse, then ask your doctor what other options are available.  In my case after my thyroidectomy all of my practitioners including my Mayo Clinic physician wanted to put me on Synthroid. Not only did this not help but it made me feel worse. After getting on a natural desiccated thyroid hormone I noticed my energy returning, my heart rates became more stable, and my headaches and hair loss stopped.  Be persistent, and you may have to do some research yourself, but always ask questions and research your medications yourself.

9. Exercise: Types and What Makes it Easier to Do

Interval Training: Now, this is a disclaimer and I know many POTS patients are told to do exercise but to avoid strenuous exercise because it can make them feel worse. However, in my situation, here’s how I train and what has worked for me:

a. Interval Training: including hill training after I stretch and warm up for 4 minute intervals for a total of 20-25 minutes.  These intervals are supposed to be progressive. For example, on my training sheet that I got from a running coach it said to do a two minute segment at level 4 on the treadmill, and run at a 5.0 speed, then do a two minute segment at level 6 on the treadmill and run at 5.0 speed for two minutes, making this a 4 minute progressive type interval on the treadmill. However, I can’t do this very well with the POTS it is so hard to catch my breath at the end of the four minute segment. So I had to come up with another alternative.  What I’ve done is to change this around. I do the hardest interval first, meaning that if I’m doing a four minute segment I’ll do the first two minutes at a 6 incline and then do the remaining two minutes at a 4 incline all while maintaining my 5.0 pace. I do this type of work for about 20-25 minutes at the beginning of my workout with some variations in the speed and incline intensity,  and build in some 1 or 2 minute walking rest periods in between each 4 minute segment and this has helped in many ways. I think this has helped build my endurance, and leg muscles with the hill work, and the best part is that the last part of my workout which is a 30-45 minute run, is actually enjoyable. No matter how fit I become it seems like the beginning of my workout is always very difficult, especially to get my breath. I have a theory which perhaps some of you could help me with is that in POTS patients we may do better with sustained activity if we can get through the initial warm up and workout phase. Meaning that if we can get our bodies to push through the initial hurdles, then rest briefly but don’t stop the exercise, that it is actually easier to do the 2nd half of your exercise session because either our lungs are acclimated, or the blood is flowing better and getting the brain and muscles more readily after we have done our “warm-up”. So please let me know your comments if you try this, and please adjust your own workouts to fit your needs. Keep in mind that my workout took me a long time to be able to do. Initially, like I said I couldn’t even walk the dog around the block without resting, so just do small increments and build up your stamina. I don’t think it’s helpful to any of us if we push ourselves beyond our limits especially at the beginning or if you’re in the midst of a POTS relapse.

b. Add Music: For me, I have difficulty even in running 1/2 of a mile without music, but if I strap my IPOD on, and listen to some energizing tunes, my legs feel during the 2nd half of my run like I could go forever, and I can normally run anywhere from 4-6 miles (5-6x a week) without much difficulty. There is something about letting your mind “zone out” with the music and it helps to steady my breathing or for me not to hear my breathing, which I know is much louder (at least at the beginning of exercise) than anyone else around me. So if I can help fool my mind into thinking about something else, and almost go into a meditative state, I can maintain my exercise for much longer by incorporating music into the equation.

c. Get A Good Quality Heart Rate Monitor:  This can be a good tool to use while you’re exercising and to see how you are progressing. Once you are familiar with how your body feels when exercising you will know if you’re pushing yourself too hard or when to perhaps keep going.  But having the heart rate monitor at least in the beginning will give you some concrete data on your perceived exertion level and how that correlates to your heart rate.

10. Check Your Vitamin D3 Level (The proper test to have done is 25-hydroxy Vitamin D)
Many doctors will order the wrong vitamin D test, but the 25-hydroxy Vitamin D test is the most accurate means of testing the levels of Vitamin D in the body. And for those of you who say you are taking a Vitamin D in it, most likely it isn’t enough. There is an epidemic of  patients with low Vitamin D levels in this country and it is important to know not only where your level is, but also to understand that “Normal” levels do not mean optimal levels. You want to be at 70% of the upper range for Vitamin D, not just within normal limits. Low or low normal vitamin D not only is not giving your the immune system protection that we all need, but can cause your joints and muscles to ache and feel like you’ve been run over by a truck. Couple that with the fatigue of POTS and you have a recipe for disaster. Have your level checked first, but then if you’re low, consider supplementing with your doctor’s permission of course, you may need to print out some research online to bring him/her on the benefits of vitamin D, but then consider supplementing with a good high quality Vitamin D Liquid. The liquid D is absorbed more easily and with POTS patients, sometimes we don’t digest things or absorb things properly, so the liquids can help.

Note: You also will need to take responsibility for understanding your results, and even great places like the Mayo clinic can drop the ball on some things. In my case even though my Vitamin D level was 21 with a range of 20-40, no one ever mentioned that I should increase my vitamin D levels or supplement, even though I complained of chronic muscle aching and or course the low energy. Since I needed to be at 70% of the upper limits which would have made my ideal level of Vitamin D from 34-40, no one mentioned this to me. When I got home and did more research on the importance of vitamin D and started supplementing, not only did my muscle aching stop, but I had more energy and felt better overall.  Low or inadequate levels of Vitamin D have also been linked to depression so that perhaps explains why many people, even those without POTS feel better in the summertime when there is more Vitamin D that we get naturally from the sun. And in POTS patients, some of the theories regarding how the immune system may be involved in POTS make it even more important for us to have adequate levels of Vitamin D in our system.    You need the exact numbers and you need the copies so you can track over time how your numbers are trending. Many values in lab work may be normal but not optimal, so you need to know that in order to improve your health.

*** As Always: Get Copies of Your Own Medical Records, Including All Bloodwork So you Have Your Own Records ***

Never, ever, rely on some nurse from a physician or hospital office calling you and telling you your results are ‘Normal’.

11.  Iron Levels: Have your physician check both your serum iron and Ferritin Levels: Most physicians will simply look at the level of serum iron, but in many POTS patients ferritin which is the storage iron is low or very low and this can exercerbate low energy.

12. Vitamin B12 Should be Tested: Ranges are also misleading, and most of us will feel better having Vitamin B12 levels as close to the upper limit of normal as possible. I have added in Vitamin B12 shots once weekly for myself IM, in the muscle. (you can give them yourself or have your doctor give them to you) It’s less expensive to give them yourself or have someone give them to you at home. Generally you will need a prescription for the medication, but your doctor can show you how to administer the shots. I’ve personally noticed a big increase in energy, stamina, less pins/needles feelings, less numbness in my arms and hands since taking the Vitamin B12. And because B vitamins are important in nervous system functions my theory is that it could be something that is studied in the future with regards to POTS  treatments.

11. Supplements: (With the OK of your Health Care Provider)
Other Supplements to Consider: Magnesium, if you  get a good quality magnesium, not the magnesium oxide which can be constipating by a magnesium glycinate or magnesium citrate can be helpful.  Magnesium can naturally lower the heart rate and is helpful to also take at night to help relax you naturally and help you sleep. Plus it prevents muscle spasms and has all kinds of other benefits, not to mention many of us are magnesium deficient. Vitamin C, Vitamin E, Co-Enzyme Q-10, Alpha Lipoic Acid  are all things you may want to discuss with your doctor to see if they may be helpful in your particular situation.

12. Small Meals Throughout the Day: Eating 6 small meals throughout the day: Never letting blood sugar get too low, and carrying snacks with me. Having protein along with carbs, so if I’m going to eat some grapes, then I’ll have a few spoonfuls of Fat Free Greek Yogurt along with it to provide protein and balance out my blood sugar.

13. Build in Time To Relax: Make sure to include the things in your life and people in your life who are supportive. Know that some days you will need extra rest and it’s ok to recharge your batteries. Figure out the positions that are most restorative for you. For example, I find that resting after a tough exercise session is easier and more comfortable for me if I lie down on a loveseat, and put my legs up on the edge of the loveseat. I can position my laptop on a pillow on my lap and continue working this way, while elevating my feet and legs which seems to help make me feel better and recover from either exercise or if I just need to rest.

14. Find a Good Doctor Who Will Listen to You:  Even a physician who knows nothing about POTS but who is willing to learn is better than settling for a health care provider who is simply not informed and who belittles your symptoms.  You may have to interview several doctors, but it’s your life at stake so find one who will work with you and address your needs and concerns. Most POTS patients are high achieving individuals so being told that your symptoms don’t exist or aren’t important simply adds to the problem and makes things worse. Due yourself a favor and find a health care provider who is either informed about autonomic disorders, or who is willing to learn and one who will work in conjunction with you to help guide your care.

Have any tips that you use to help with an autonomic disorder? Or what things do you to  to reduce your heart rate if you have postural orthostatic tachycardia? Write in and share your thoughts.