CRITICAL Choline / Sensitivity Problem -- Please Help

[joejack102]

I have a serious situation, and nobody can help me so far. The emergency room's can't do anything, neurologist, endocrinologist, cardiologist, etc. have been unable and unwilling to assist me. I cannot explain in words how desperate I am. I'm at a 9.9 out of 10 on the scale of human suffering a person can even tolerate. I'm very desperate, so please, I beg of you, give me a chance and see if you think you can help me. I know I posted before, but the post got so off track with methylation (which didn't seem to help), and I wanted to give this a fresh start and fresh set of eyes.

Simple story: I've had POTS Syndrome my entire life. Starting at age 13, I became the most sensitive person to the effects of herbs & meds. 1mg was as if I took 1,000mg. It was insane. It was impossible to live like this having medical reactions to herbs soaps, shampoos, etc.

Age 19, discovered (through luck and a recommendation) that Ashwagandha would give me temporary relief for my sensitivities. I had to take it every single day to not be reacting to all the herbs in soaps, shampoos, supplements, etc.

Age 20 (approx), discovered that Chamomile did the opposite of Ashwagandha and made me more sensitive, temporarily. So, in other words, if I took Ashwagandha & Chamomile together, they were counteracting each other 1 to 1.

Age 24, I began using Choline Bitartrate (and occasionally CDP Choline) instead of Ashwagandha after reading that Ashwagandha affects Choline receptors. Choline caused a permanent shift in my sensitivities, even after I stopped using them. It caused me to be left with extreme fatigue, shortness of breath, overall pain, brain fog, and non-responsive to herbs/meds even after discontinuing and it has not improved on it's own in years.

nAChR = Nicotinic Acetylcholine Receptor

Possible theory so far: POTS is caused by a partially blocked or inhibited parasympathetic nervous system. My theory is that Ashwagandha worked since it is an acetylcholine receptor agonist, and Chamomile did the opposite because it is an acetylcholine receptor antagonist. And obviously, Choline directly did something long-term, but I don't understand WHAT. I've got to find the reverse feedback mechanism that tells the body the parasympathetic nervous system is over-active or under-active to get my life back. I feel so bad 24/7.

I WILL BE FOREVER INDEBTED TO WHOMEVER CAN HELP ME SOLVE THIS EQUATION AND GET SOME RELIEF!!!!

 

[Ravn]

What an awful ordeal for you! Sadly I do not know what went wrong for you or how to fix it, wished I did.
Only thing I was wondering, given your sensitivities, is whether you've looked into the mast cell angle? A long shot, I know.

 

[joejack102]

What an awful ordeal for you! Sadly I do not know what went wrong for you or how to fix it, wished I did.
Only thing I was wondering, given your sensitivities, is whether you've looked into the mast cell angle? A long shot, I know.

Where can I get help figuring this out? I'm desperate.

 

[Ravn]

Where can I get help figuring this out? I'm desperate.

You could start searching the MCAS threads here on PR. Or google MCAS = mast cell activation syndrome. Be warned though, MCAS has a lot in common with ME: a huge number of confusing symptoms and very few doctors who know about it. But there are members here on PR affected by it and much more knowledgable about it than me. Good luck!

 

[Countrygirl]

I wonder if @Hip could help here?

 

[Hip]

I wonder if @Hip could help here?

I made some suggestions on one of @joejack102's other threads on the same subject. My feeling is that @joejack102 may have triggered some sort of immunological or autoimmune response, and once triggered these things cannot be easily reversed. It may be analogous to ME/CFS triggered by vaccination: there is no known way to reverse this.

So if ME/CFS is what @joejack102 has, normally you would treat the situation as per usual with ME/CFS: testing for viral infections and treating accordingly if found; and trying things like B12, methylation protocol, low-dose naltrexone, etc.

However, I am not sure the shortness of breath symptom mentioned quite fits in with ME/CFS:

extreme fatigue, shortness of breath, overall pain, brain fog

Looking at WebMD's Symptom Checker for fatigue + shortness of breath, here is a list of diseases that manifest both symptoms.

Anemia is in the list, so that might be worth testing for.

 

[Eastman]

@joejack102

I stumbled upon this thread while doing a search: Acetylcholine caused crash

I don't know whether you've seen it or is of any use to you.

 

[Hip]

I stumbled upon this thread while doing a search: Acetylcholine caused crash

Good finding. Of interest on that thread is the comment:

Acetylcholinesterase inhibitors have been known to sometimes induce a PTSD-like state. Also, pesticide poisoning (a known trigger of ME/CFS) is essentially acetylcholine overload (pesticides are acetylcholinesterase inhibitors).

So assuming you have ME/CFS, @joejack102, it could have been triggered by the general ramping up of the cholinergic system that the choline bitartrate + citicoline supplements caused.

In my own case of ME/CFS, chronic organophosphate pesticide poisoning was involved, due to a spillage of a large amount of pesticide in my home. Organophosphates pesticides are acetylcholinesterase inhibitors: they prevent the breakdown of acetylcholine by the enzyme acetylcholinesterase, which then increases acetylcholine levels.



A recent thread that may be of interest:

Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome

 

[rockymountainmama]

Dear @joejack102
Please look up Mast Cell Activation Syndrome. God Bless You to find help soon.

http://www.mastattack.org/2015/05/mast-cell-disease-fact-sheet/
https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf