POTS question

[kfelty]

Hello everyone,
To make a long story short, I was diagnosed with POTS in march after seeing many many many doctors. When I had the ttt done this was before I was diagnosed with pots and they weren’t even testing for pots, they were testing for neurogenic syncope I believe or vasovagal syncope. So of course they didn’t do any blood work to test my epinephrine levels while I was supine and upright. Long story short, I clearly had pots because my heart rate got up to 140bpm. I have a strong suspicion that I have the hyperadrenergic form of pots and I keep bringing it up to my pots specialist and I feel like nothing is being done about that. He told me that I am hypermobile and strongly suspects that I have EDS and told me to find a specialist. I came across Dr.Francomano but im on the waiting list for an appointment. I sent my paperwork in to the office I believe in may or June and they still haven’t made my appointment :-(… My pots specialist also think I have mcad because I get terrrrrriblw flushing its insane. I’ve been taking the z/z combo and it helps the flushing aliiiiitle bit. So my question to any of those people out there who have the hyperadrenergic form of pots, what type of medications have helped you? Or what at all has helped you? Because my worry is that im taking the “common” medications for pots but what if its not completely helping because I have the hyperadrenergic type???… I cannot kick the debilitating fatigue, but on the other hand I suffer from insomnia… I literally cannot turn off my brain, while on the other hand I get the worst brain fog and cannot concentrate. Could it be that my body is in constant flight or fight mode and thats why I can’t function or do activities because I am so run down? When I first had the worst of the exacerbation of my symptoms I literally could not get out of bed. I went to every specialist and they even thought I had a pulmonary embolism because I was so short of breath. Currently for pots I am taking midodrine mestinon desmopressin and the z/z combo… The doctor just prescribed cymbalta 20mg to see if it will help with the fatigue… I was VERY reluctant to try that because imam deathly afraid of antidepressants… Has anyone tried that? Does it help people with pots or hyperadrenergic pots? I really hate the fact that I have to take all of these medications… And I didn’t list all of them, just the ones specific for pots. On another note, I have tried to mention diamox to my doctors but they never seem to know about it and noone wants to prescribe it. Because I get terrible headaches in the back of my neck and occipital lobe which then turns into a migraine. I feel like everything is connected and I really want to get to the root of everything.

[Barbara]

I went down the non-pharmacological route, for my POTS. Off the top of my head these were:-

1). Increase salt intake (iodised salt is best, if you can get it), this addresses several matters we seem to be affected by, mainly:-
Helps increase blood volume to a more normal level
Helps keep us better hydrated – as drinking water alone just flushes out essential minerals
Improves the quality of stomach acid, so that our food actually digests (instead of fermenting!)

2). Wear good fitting, full-length, support hose:-
Helps stop blood pooling in the legs
Helps stop oedema from further restricting normal tissue and circulation function

3). Sleep with the head of the bed raised, or sleep with your head in a sitting position

With regard to your sleep issues:-
Sleep comes in cycles, so make sure you have done all the necessary preparation for bed before you get tired, so that you can immediately take advantage of that particular point in your sleep-cycle, when it arrives – otherwise you go past it and that just adds to the difficulty of invoking sleep. Also, people usually think too much about things when they get to bed, this makes them hold their breath and this itself can worsen the pain and put the body under chemical stress. The way I get round this is to breath a little bit deeper and concentrate on the ‘breathing out’ bit, sort of making it a little bit noisy (if you can understand what I mean). This usually takes the focus away from everyday life and helps get me to sleep when otherwise I can’t.

Hope some of this helps.
Regards
Barbara
(UK)

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