Things that helped improve my POTS symptoms, Hope this can help you

[Sonya]

I have Idiopathic Hyperadrenergic POTS. I went to Vanderbilt (Best place to go for dysautonomia assessment and diagnosis)- I saw Dr. Biaggioni in 2012. They also have a Research program that you can participate in that is free if you are accepted and provides a lot of info into your disorder and education. I learned alot during my treatment that I'm still using today and wanted to share so that hopefully my difficult journey can improve others. May God bless you all during this difficult time. 

What helped me improve/decrease symptoms: Avoid standing in one place- if so squeeze/pump quads.  Keep hydrated-extra fluid intake (V8 helps since a lot of sodium), If you drink a lot of water make sure you are getting extra salt and electrolytes otherwise you will end up feeling unwell from hyponatremia.  Higher salt diet, I supplemented w salt tablets. Avoid dehydration. avoid getting overheated, not bending over- squat instead, sit when possible- elevating legs, no climbing stairs if possible, no reaching above head, no blowing up balloons. Do not miss a meal, eat smaller meals, avoiding/limiting caffeine, alcohol, lactose, white sugar, other refined carbs & gluten since they can all increase symptoms. Avoid fatigue, get plenty of sleep. No strenuous exercise- I bought a used recumbent bike and no matter how bad I felt I exercised 20mins daily and performed lower extremity weights/squats 3x/week no matter what. Decrease stress (easier said than done)-Cognitive behavioral therapy- since having illness is very stressful/and depressing at times. Abdominal binder, Compression stockings-especially if flighing. If you have to fligh, be very careful-ask for a bulkhead seat and pump legs/elevate if possible, request a wheelchair to assist if necessary. Do not give blood. Avoid anesthesia unless absolutely necessary-and if required request an Arterial line and extra IV fluids. Avoid epinephrine. (Remember everyone is different, this is my individual experience, please consult your Doctor since every situation can be quite unique. 

[Mistri_The_Squirrel]

Avoid anesthesia?  What happens if you have to have anesthesia?

[Pistol]

Well - anesthesia in my case always causes a flare. Plus  - if we all could do all of the things that make us feel better or keep us from passing out or from doing regular activities we would all be on the same treatment plan. Dear Sonya - I will probably not be in favor with many people on this site but: life does not really go along with the rules of POTS. 

[Bluebonnet08]

Sonya - how did they arrive at the diagnosis of hyperadrenic POTS if you don't mind me asking?  I really want to get in to Vanderbilt after my pregnancy.  

What are your attacks/episodes like?  Do you feel a sense of impending doom or like you will die?  What do you do to manage the attacks?  Mine have gotten so bad with the pregnancy, especially at the end.  I am getting 2 IVs a week, but it's not enough to keep them fully at bay.  

[p8d]

Thank you, Sonya.  It’s always helpful, especially for newbies, to get this information.  

[Sonya]

I was advised by the POTS Autonomic specialists to avoid anesthesia if possible since we have many different reactions to meds and treatments. I was diagnosed with POTS at Cleveland Clinic originally with a TILT table test. Then at Vanderbilt University, they repeated the TILT table test and they drew your blood for Norepinephrine and Epinephrine levels as you were laying and then again while you where in the upright position. My Norepinephrine levels went from 250 laying to 1260 standing. You have to be off a lot of medication for 72 hours prior, which was very difficult but required in order to get accurate results. I'm so sorry bluebonett that you are suffering so. I hope once you are done with your pregnancy that your symptoms will lessen. Im now through menopause and find flares not as bad as they were just prior to every period. Everyone is so different. 

[WinterSown]

I was diagnosed by my local hospital's cardiac group, never got a clinic so I guess I'm lucky--so few of us have had your wonderful experience with going to clinics. Everyone is so unique. So much on your list would make me a lot worse. I can't digest brown carbs, an abdominal binder will strangle my hernia and the deliberate, high-level intensity and exertion at PT raises my BP to oxygenate me and eliminates my pain--my DPT doesn't let me mamby-pamby it and it's all out war on the big D, he's very proactive with my PT. I'm crushing it at PT. I can't imagine eliminating anesthesia, especially when you need it for surgery or procedures--the pain would cause huge flares. I've been doped out a few times in the last three years and not a problem at all.  Thank you for the list, so full of suggestions.

 

[Gillian]

Sonya - Thank you for the list. Most of these things are the same for me too.