What should I do? Advice Needed.

[JoeJack101]

I was diagnosed with Mitral Valve Prolapse Syndrome & Dysautonomia at the Birmingham clinic in 2005. At the time my main problem (and the only symptom I really noticed) was a severe sensitivity to the effects drugs and herbs. It wasn't an allergic reaction, it was that I experienced the exaggerated effects of whatever it was, even by consuming the smallest amount or even touching it! And it was not in my head. It was never a sensitivity to foods or anything else. Only medicinal things. It was impossible to live like that and dangerous being so sensitive.

Move forward a couple years: I noticed that the sensitivity to drugs and herbs was completely GONE when I had anything that boosted Acetylcholine. At first, I noticed that Ashwagandha extract (which boosts acetylcholine receptor activity) made my sensitivity go away completely. Any choline supplement worked the exact same.

But here is the problem: This boost in choline or Acetylcholine leaves me dangerously fatigued all the time. So much so that I am unable to work or get anything accomplished. It's horrifying. It's basically ruined my life.

So there is a two fold problem: If I do not take Choline, I am left 1000x's more sensitive to herbs and drugs than any human alive, even touching some pills can cause the medicinal effects on my body. But this goes away if I take even just a little Choline, at which point I am no longer sensitive, but I am fatigued and exhausted all the time if I take it.

I live in the Dallas area, but I don't even know which doctor to see.  I want to see a dysautonomia doctor.  It's just bizarre, and I just want to have a normal life.  Any help or advice is greatly appreciated. I'm desperate.

[AireScottie]

Well, that is a complex problem!  The only suggestion I have is to try Mestinon.  It's a cholinesterase inhibitor, so it keeps the acetylcholine at the receptor site longer before it becomes cholinesterase and is no longer active.  It also may be easier to regulate your dosage this way, as herbal preps are often not consistent in strength, unless you've got a compounding pharmacist or excellent herbalist preparing it fresh just for you.  Mestinon is becoming more widely used to treat dysautonomia now, which makes sense, because it is the main neurotransmitter, along with norepinephrine.  It has been used for many decades, so the side effects are well known.  It can, however, make people sleepy, so you may have trouble with that.  I find I'm very sleepy when I increase doses, then it goes away over time.

Have you ever been checked for autoimmune diseases?  Chemical sensitivity is quite common with an overactive immune system.

[Heiferly]

Here's the information we have on seeing a dysautonomia specialist.  The hospitals listed are the ones with full clinics that have sophisticated autonomic testing equipment not available at other hospitals:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196