What is postural orthostatic tachycardia syndrome (POTS)? What are its signs and symptoms and what are the mechanisms by which all body systems are affected? How does the autonomic nervous system normally function? What is the etiology, or cause, of dysautonomia? How is it diagnosed? Can it be treated? Join professor Carrie on a journey through the autonomic nervous system and develop a deeper understanding of autonomic function in general, and POTS in particular. This lecture is presented at the college level and is meant to be accessible for patients, family members, students, and medical professionals.
0:00 Background and purpose
1:28 Definition and basic mechanism of POTS
8:10 POTS symptoms and causes: acute cerebral hypoperfusion, chronic cerebral hypoperfusion, chronic organ and tissue hypoperfusion, autonomic dysregulation, sympathetic hyperactivity (hyperadrenergic POTS)
16:59 Organization of the nervous system: central nervous system, peripheral nervous system, afferent pathways, efferent pathways, autonomic nervous system, sympathetic division, parasympathetic division
24:23 Nervous system signaling pathways: preganglionic neuron, ganglionic neuron, acetylcholine, cholinergic receptors, nicotinic receptors, muscarinic receptors, norepinephrine, adrenergic receptors, alpha receptors, beta receptors
43:50 The dysautonomia family of conditions: POTS, neurally mediated syncope, autonomic failure
46:13 Etiology of POTS: genetic mutations, joint hypermobility, Ehlers-Danlos syndrome, norepinephrine transporter (NET) deficiency, catecholamine synthesis, tyrosine hydroxylase (TH), aromaticΒ L-amino acid decarboxylase (AADC), dopamine beta-hydroxylase (DBH), catechol-O-methyltransferase (COMT), monoamine oxidase A (MAO-A), epigenetics, deconditioning, mononucleosis, autoimmunity, Guillain-Barre syndrome
1:06:39 Diagnosing POTS: medical history, tilt table test, catecholamines test, specialized autonomic testing
1:16:18 POTS prognosis
1:19:26 Managing and treating POTS — non-pharmacologic: diet, methylcobalamin, methyltetrahydrofolate, exercise, environment, psychosocial considerations
1:37:47 Managing and treating POTS — medications: mineralocorticoids, beta-blockers, alpha-agonists, reuptake inhibitors, psychostimulants
1:53:46 Conclusion and hope for the future
What about EMG as a diagnostic tool? ο»Ώ
Jaclyn, ARE YOU SERIOUSLY THE ONE IN THE PHOTO?!!?! Wow, it’s like meeting
a celebrity! What are the chances? Well, thank you for modeling for us! π
They didn’t powder my private areas either, but believe me, that powder
made its way to every inch of my body. I remember finding some IN MY EAR
about a month later! ha. Some great news coming out about dysautonomia
treatment. Don’t go too far, OK?
that’ll work!! ; that’ll work!! π
Would it work if i printed it, filled it out and uploaded a good jpeg of it
to your email address? It doesnt seem to be working well for me to fill it
out in Word. Also, after just skimming the list I found that I have
experienced or currently experience nearly every symptom.
Hi Wendy Darling, Would you be able to fill out the symptoms checklist on
my site under “Articles and Handouts”? I should be able to answer your
question then! π
I have had this symptom for a cou ple of years now where my pupils will
dilate. They will sometimes do it quite rapidly dilating and constricting
opening and closing so that it is difficult to focus on anything. It gets
worse at night. In the light they constrict and dilate back in forth but at
a smaller size. If you stare at them like normal, eventually you will see
it. Sometimes, they dilate like saucers without constricting for awhile.
Could this be dysautonomia? I have wondered.
Hi SummerSunCity23, I also have a “slight” MVP. If you are concerned, a
second opinion may help. Mine turned out NOT to be an issue, which is not
atypical. Did you try H1 and H2 antagonists (something like Zantac and
ZYRTEC)? That may be a big help until I can get out the results of the rest
of my research. You may want to check out the videos about mast cell
treatment — I hope they are a huge help. Hang in, my friend. π
Hi grettagrids, It sounds like you may not have heard about our positive
responses to antihistamines? Have you seen the videos about hydrocephalus
and Diamox? Please take a peek and see if you and your current doctors can
help you with those aspects. Life changing! Big hug,
Hi! I live near you in keller and cme across your video and your website.
Its interesting that you are an OD. i have albinism, fuchs corneal
dystrophy, and EDS, POTS, and dysautonomia! I was just recently dagnosed
with the EDS triad . Its just that i have all of these.
Thank you for the reply! Wondering if you and your family ever did a Lyme
Western Blot or CD 57 test? My Western Blot was negative however i had a
very low cd 57 (31). Would be interesting to see if low CD 57 levels are
associated with something other than chronic lyme (i.e. dysautonomia, mast
cell disorders etc) as the symptoms definitely overlap!
Hi footballmontana, I got sick almost 10 years ago, too. I understand what
it’s like to have everything seem to fall apart — this is a dreadful
condition, and I’m so sorry you are going through it. There is hope,
though. I’ll be releasing the results of research soon that will be a HUGE
help for most of us. My kids don’t even think they have a “condition” any
more! Have you tried Zantac/Zyrtec yet? That combo may help you with some
of your gut problems. More very soon. Hang in with us, OK?
I’m 35 been diagnosed since 25. My stomach is so bad now it hurts to eat
and drink. So many symptoms and things not working in my body. I’m to tired
for all this anymore :,,(
Hi Stretchysilver, Oh my, beta-blockers nearly killed me — and I tried
FIVE different ones! They can also cause depression, which certainly hit
me. I was so happy to STOP those! I’ll have some new research WITH ANSWERS
for you for the fatigue/brain fog/weakness, etc soon. Wrapping up the
research and medications now. I’m including medicines available
over-the-counter for those of us with few understanding doctors… π
Working as fast as I can!
Hi Dr. Diana, How long would it take the zyrtec to start working if it was
going to improve symptoms? I have taken it the past 2 mornings (the extra
strength one) and haven’t noticed improvement. I figured i would see
improvement pretty quickly if it was going to happen? I have been diagnosed
with POTS years ago and have been suffering ever since. The only RX i am on
is low dose Zoloft (25mg) as there are studies that show it can help with
POTS. I find it does a bit, but i am still really sick.
BEEN THERE, Jennie! The first “POTS specialist” I saw wouldn’t even put me
on a TTT, either! Did you try a “poor man’s tilt table”? It can give you a
false negative, but never a false positive. GI!!!! See you at the treatment
trials?
Hi Dr Diana. I’m wondering – do POTS medications ever improve the
associated fatigue/brain fog/weakness etc? Those symptoms are debilitating
for me. I have little in the way of a life as I just want to be in bed
permanently. I’ve been through the whole rigmarole of autonomic testing and
have just been diagnosed with POTS. I’m a bit drug-phobic after a bad
experience with Propranolol but if they could even potentially improve my
fatigue, I’d risk it for a biscuit and just give the meds a try! xx
Strangely enough, it’s always me having to mention to doctors that I
suspect it! I’ve worn an event monitor once, but it showed nothing as I’m
not ALWAYS symptomatic. I only wore it for little more than 24h anyways. My
main symptom is the broken thermostat and GI things. No tilt table test etc
has been done :/
Hi Jennie Svensson, BOY, can I relate!! I would love, love, love to see you
participate in our upcoming trials! Hang in, Hon,
I’m so sorry to hear that, Haylie, but amazingly, that is not uncommon. I
KNEW that was what I had, and STILL had trouble getting a diagnosis!
Heavens! Good timing for you, though, as I’m preparing the trials for
treatment of this beast. I beat it — Hope abounds. Big hug, Diana
(Sorry I ran out of characters~!) I show symptoms of POTS like heat
intolerance and high heart rate standing let alone walking but my doctor
doesnt really care since I’m on beta blockers which only work when I’m
freezing cold and drinking tons of water/salting it up all day. I want to
be a normal 22 year old who goes out and has fun at the movies! I’m
basically housebound/couch bound π it sucks.
I am so excited that I hope I can sleep (It’s about 10pm on the east
coast). I was just reading The Driscoll Theory: Part 2. I pulled up my MRI
scans and I am sure this is my problem. It all makes so much sense! I hope
I can convince a doctor of this. I need relief!
Ok I will try to find another doctor that I can see “before March 2013”
that will let me try gastrocrom and Diamox. Thank you!
It’s hard when your doctors aren’t open to considering things that haven’t
occurred to them before, isn’t it? I mentioned to a well-known EDS
researcher, who DOES prescribe Diamox AS NEEDED, that we perhaps we needed
to do a double-blind study on this. You’ll love this — she said that was
“ridiculous — if we have symptoms of hydrocephalus, we need to be treated
with Diamox.” A voice of reason!! Hang in, OK? I share your frustration,
though! π Diana
YES, YES, YES!!! This is part of what I’ve been trying to explain to so
many doctors — what are the chances of us having so many rare, yet
UNRELATED conditions simultaneously, with no main underlying condition?!
Oh, you show EDS? My friend, you are a walking, talking “Driscoll Theory”.
Can you help me by filling out the ‘symptoms checklist” under Articles and
Handouts on the website? You can be 1 of the first in our treatment trials.
I betcha’ I know what’s going on with you! & it is TREATABLE
Will your research benefit those who have dysautonomia as a secondary
issue? I have EDS but also have autoimmune issues (positive ANA), Chronic
Atrophic Gastritis, high gastrin levels, Chilblain Lupus Erythematosus,
Raynaud’s, fibromyalgia, POTS, IBS, hyperinsulinemia (reactive
hypoglycemia) and undiagnosed mast cell instability. The doctor is sure
that there is a missing key that he has not found yet and that we are
looking at symptoms not causes. What do all of these have in common?