Critical Choline Situation --- Please HELP

[JoeJack101]

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.

Note: My story is weird and hard to believe, but I beg of you to give me a chance because I really need help badly.

Simple story: I've had POTS Syndrome my entire life. All this means is that my autonomic nervous system is imbalanced or does not balance for homeostasis on it's own sometimes. It is very common with this condition for most people with it to have an unexplained hypersensitivity to medications. 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 CDP Choline instead of Ashwagandha after reading that Ashwagandha affects Choline receptors. Either Choline Bitartrate or CDP Choline is the culprit. 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.

My goal: To find out whatever the heck Choline did to me and reverse it. The Choline made me worse and worse and worse the more I used it.

Possible theory so far: POTS is caused by a malfunctioning sympathetic and 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 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!!!!

 

[iamyourfather]

im sorry man, that sounds very bad tbh sadly i personally cant help you but i will link a guy from OL R&D team, he helped me a lot with a bunch of things. maybe he has an idea what substance can help, based on your infos about which receptors were involved etc. i dont know and i cant promise that he has an idea but maybe he has.
xtyler

good luck!

 

[rowz4broz]

wow man this is some serious ****. im hoping that one day your will be able to find peace.

posting in here to get views and thread replies up so that possibly this thread can blow up a bit and get someone of use that could help.

 

[JoeJack101]

Thank you for you kindness.

To summarize my main problem: Let's make it simple. I took Choline Bitartrate (and CDP Choline), and over time it slowly made me less & less sensitive to meds all the way to the point were I was severely fatigued 24/7. So there is some biological effect of that supplement that is very specific and reversible. I just can't seem to figure it out yet how to reverse it.

Practically anybody on the internet could help solve the puzzle if they could help me google the effects of Choline on the body, and figure out a hypothesis as to what happened and how to reverse it.

 

[rascal14]

Well my next guess would be an Anticholinergic, but you should really find a doctor to help you with this.

 

[JoeJack101]

Well my next guess would be an Anticholinergic, but you should really find a doctor to help you with this.

I've been to countless doctors, and none have been able to work with me on this. I need a new doctor obviously.

Thanks for your suggestion. This is where it gets interesting: Benadryl (diphenhydramine) is supposedly anticholinergic, yet it makes me feel awful and hasn't helped on multiple attempts.

Keep thinking though: I'm sure appreciative of your help, and I'm sure the answer is out there and I'm desperate!

 

[muscleupcrohn]

Not giving any advice or suggestions, and definitely not a doctor, but have you tried any other adaptogens? I mean, just throwing herbs and supplements at a serious problem doesn’t seem to be the ideal course of action, particularly in light of your response to something as simple (and found in foods like eggs) as choline. Also, just curious, not recommending you try it, have you used any AChE inhibitors like huperzine or galantamine?

 

[muscleupcrohn]

Also, have you had blood work done? Just a general check up for various parameters, and also some hormone levels checked? Testosterone, estrogen, cortisol, etc.

 

[JoeJack101]

have you tried any other adaptogens?

Yes. Before Choline Bitartrate I used to be super-sensitive to herbs & meds. Now they don't even work properly, and all they do is give symptoms of toxicity like upset stomach, etc.

as simple (and found in foods like eggs) as choline

That's another piece to the puzzle I haven't been able to figure out: I spent 10+ years being hyper-sensitive to the effects of meds & herbs, yet even though I had plenty of foods with PhosphatidylCholine such as eggs, I remained sensitive. It wasn't until using Choline Bitartrate and/or CDP Choline (one of the two, not sure which one since I used them together) that I became less & less sensitive and therefore more & more chronically fatigued.

have you used any AChE inhibitors like huperzine or galantamine

This might be another clue: Huperzine A, which is an acetylcholinesterase inhibitor and therefore prevents AcetylCholine from breaking down, gave me severe acetylcholine poisoning at small doses. Years ago when I tried it, I ended up in the emergency room since I couldn't stop vomiting. This is not a normal reaction, so somewhere in my body the acetylcholine is overactive and not being released or something in my best guess.

have you had blood work done? Just a general check up for various parameters, and also some hormone levels checked? Testosterone, estrogen, cortisol, etc.

I've had tons of bloodwork done. Testosterone and estrogen were not checked to my best knowledge though, although the thyroid stuff was obviously checked and was normal. Even if testosterone was high or low, it would not explain my range of going to from hyper-sensitive to meds to being non-responsive. Think about this though: If it was something that would be normally found on bloodwork, then everybody with high testosterone or low testosterone would be having this wide range of medicine hypersensitivity versus non-responsiveness that I've been going through. I'm almost certain it has to do with the sympathetic (fight-or-flight) nervous system or the parasympathetic (rest & digest) nervous system.

Please keep throwing theories at me, because it gives me stuff to consider & research.

I have one theory that I'd like to get advice on, however I don't want to put all my eggs in one basket in case it fails: Notice how the type of choline in eggs and foods never affected me... Perhaps it's because I had the raw form of Choline salts (Choline Bitartrate) versus the type found in foods which is PhosphatidylCholine (to my best knowledge). Perhaps I need to check out Phosphatidic Acid? If it's not that, then maybe it was one of the various effects of CDP Choline, which has more complicated effects in the brain/body?

 

[muscleupcrohn]

Have there been any changes in your life independent of supplements? Things like work, location, moving, change in relationship status, etc.?

I’m not saying that a hormonal imbalance is responsible for your issues, only that it may be useful in attempting to pinpoint what is, a potential indicator, if not the root/underlying cause.

Also, and again, don’t go and try anything just because I mention it, have you ever used any racetams?

 

[JoeJack101]

Have there been any changes in your life independent of supplements? Things like work, location, moving, change in relationship status, etc.?

None. I promise there is no way to physically feel this bad as the result of something like that without me knowing it. 100% certain it was one of those two forms of Choline that shifted me from being 100x's hypersensitive to stuff ---to--> Normal ---to--> 24/7 Fatigued. I feel so bad physically, not emotionally. I'm in so much fatigue and exhaustion that I'm in excruciating physical pain.

have you ever used any racetams?

It's been a long time, but I wrote down in my notes an occasion or two when I tried Piracetam. No benefit and gave me fatigue if anything.

I love the ideas though! You can tell I've been so desperate over the past years that I've tried several things already to no avail! I've been so desperate!

I should also add that Adderall & Vyvanse (prescribed to me for ADHD) had no benefit to this problem of trying to restore my sensitivities to be normal again. Yes, it made me focus, but I was still suffering through just as much fatigue. Plus, I tried L-Dopa (Mucuna Pruriens) in an effort to increase Norepinephrine & Epinephrine and it also did not fix the problem.

I keep getting drawn back to images of the sympathetic nervous system...

 

[muscleupcrohn]

None. I promise there is no way to physically feel this bad as the result of something like that without me knowing it. 100% certain it was one of those two forms of Choline that shifted me from being 100x's hypersensitive to stuff ---to--> Normal ---to--> 24/7 Fatigued. I feel so bad physically, not emotionally. I'm in so much fatigue and exhaustion that I'm in excruciating physical pain.


It's been a long time, but I wrote down in my notes an occasion or two when I tried Piracetam. No benefit and gave me fatigue if anything.

I love the ideas though! You can tell I've been so desperate over the past years that I've tried several things already to no avail! I've been so desperate!

I keep getting drawn back to images of the sympathetic nervous system...

I’m not doubting you, just trying to eliminate variables that can often be overlooked. If you can figure out what is not causing it, you make it easier to figure out what is, then you can really start working on why.

Why did you start supplementing with choline? For how long? Did the effects come on suddenly or gradually? After or while using it? Perhaps, and I may well be wrong, you were going through some issues already, tried to remedy it with choline, and attributed the continuation of worsening of symptoms to the choline supplementation?

Also, have you tried rhodiola or ALCAR?

How does caffeine treat you? Theanine?

 

[JoeJack101]

I’m not doubting you, just trying to eliminate variables that can often be overlooked. If you can figure out what is not causing it, you make it easier to figure out what is, then you can really start working on why.

Agreed. Good point!

Why did you start supplementing with choline?

Well, remember how I used to be 100x's sensitive to herbal medicines? Like I was so sensitive that I would have medical effects from herbal shampoos and other OTC products if they had herbs like ginseng (energy) or chamomile (relaxation) in them. It was very extreme. Not to mention being unable to take RX's at all. It was hard to get people to believe me, so thanks for being understanding. It was weird, yes, but it was real. I assure you not psychosomatic. My family can attest to this.

Ashwagandha back then made me "normal." It is an Nicotinic Acetylcholine Receptor Agonist, and when I would use it my sensitivities disappeared like magic! Interesting, it gave me some fatigue too. But Ashwagandha only worked for 24 hours until it was out of my system. (Clue: Chamomile did the exact opposite and increased my sensitivities, because Chamomile is an nAChR antagonist.)

In 2009, after reading that Ashwagandha might be working by affecting Acetylcholine Receptors, I began supplementing Choline itself instead. At first, I used it for a few weeks. Then, my mind was blown because I wasn't using anything daily, like Ashwagandha, and I wasn't sensitive anymore. But I was fatigued.

For how long?

The first time, a few weeks. Then, I wasn't for sure it was the culprit, so years later I began using it again to try to find out. Then years later, once I was so fatigued for so long I couldn't stand it another day, I though maybe it was because I had used Choline alongside something else and needed to "pair" Choline with the right antidote. So at different times over the years, I had experimented with Choline (Choline Bitartrate & CDP Choline) over-and-over on various occasions. I felt so bad, and nothing else was working.

Did the effects come on suddenly or gradually? After or while using it

Gradually. There was a 1 to 1 ratio of how much Choline I took and my decreasing response to herbs/meds and my increasing fatigue.

Perhaps, and I may well be wrong, you were going through some issues already, tried to remedy it with choline, and attributed the continuation of worsening of symptoms to the choline supplementation?

I'm certain this is not the case. 100% promise. It also wouldn't explain the effects of Ashwagandha vs. Chamomile on my sensitivities prior. It also wouldn't explain why my sensitive disappeared to begin with if it were something else.

Also, have you tried rhodiola or ALCAR?

Both. Rhodiola is medicinal, and I remember what it felt like back when herbs worked for me. Herbs do not benefit me now. I've also tried ALCAR since it is involved in choline stuff. I tried ALCAR (Acetyl-L-Carnitine) over and over to no avail. It was no help.

How does caffeine treat you? Theanine?

Caffeine does give a boost of adrenaline. But with my body already so fragile and fatigued, I've had to avoid it. I've tried both Theanine and Green Tea on several occasions (per my notes/log), and it didn't help me at all.

Here's the thing... Perhaps there is some counter-punch or antidote per se to Choline that normal people balance and produce 50:50 to maintain homeostasis. Since my body is on "manual control" so to speak, I've got to find the antidote. Obviously something was deficient when I was hyper-sensitive... Now I have the exact opposite problem I had as a teenager. That's the best way to explain it. I want to be sensitive to meds/herbs again, and I know that will cure this painful fatigue too since it's all been tied together from the start.

 

[rascal14]

Have you ever tried THC or CBD?

 

[muscleupcrohn]

Does ashwagandha no longer work for you? You said you used choline multiple times; does that mean that eventually you returned to your “normal,” or feeling ok but being hyper-sensitive to things? As for ashwagandha vs chamomile, that is interesting, but, playing devil’s advocate and nothing else, the mind can be quite powerful when you know/think what to expect and why do expect it. Not saying I think this is the case, just doing my diligence to point out all possibilities.

If your only “problem” is now being “resistant” to things instead of sensitive, that isn’t necessarily the worst thing; the severe fatigue you describe seems to be more of a concern, no?

 

[JoeJack101]

Have you ever tried THC or CBD?

Tried it multiple times around this past August. My theory was that since it helps with other nervous system conditions that it might help me. It didn't. I got high, however it made me feel the same or worse if anything.

 

[JoeJack101]

Does ashwagandha no longer work for you?

Right. Years before I discovered Choline, Ashwagandha would temporarily decrease my sensitivities very quickly! It was fantastic! And years later I'm certain that this can be explained since it is an nAChR agonist.

Secondly, Years before I discovered Choline, Chamomile would temporarily increase my sensitivities very quickly, counteracting Ashwagandha in a 1 to 1 ratio. Chamomile is an nAChR antagonist.

After Choline that all changed. Now they both don't work.

You said you used choline multiple times; does that mean that eventually you returned to your “normal,” or feeling ok but being hyper-sensitive to things?

That's the problem. Unlike everything else in my life where the effects diminish over 24 hours as your body metabolizes, Choline caused a permanent shift. It's as if every time I used it I gradually became less & less sensitive plus more & more fatigued. Now, remember my starting point was 100x's sensitive, which is obvious a nervous system disorder. Every dose I took Choline it shifted me further to the "less sensitive & more fatigue" side of the spectrum.

As for ashwagandha vs chamomile, that is interesting, but, playing devil’s advocate and nothing else, the mind can be quite powerful when you know/think what to expect and why do expect it.

I understand & respect that, however Ashwagandha relieving my sensitivities was discovered by accident. Complete accident. I never, in the world, thought there was a solution to give me relief from being sensitive to everything. And Chamomile too, was an accident. I was taking it for relaxation, and discovered very quickly that my sensitives were back 100% from it.

If your only “problem” is now being “resistant” to things instead of sensitive, that isn’t necessarily the worst thing; the severe fatigue you describe seems to be more of a concern, no?

The fatigue is extremely severe, yes. But yes, it's the fatigue, which is so bad it's basically like all over intolerable whole-body pain. I'm in a fragile state right now, because my body hurts so bad, and since it's the nervous system, there aren't any actually tests that will point to the root problem, other than knowing I have POTS Syndrome, just a synonym for an autonomic nervous system imbalance. Sensitivities to meds/herbs is a very common symptom of this condition, but I'm the only person alive with it, to my knowledge, who has ever experimented with things to modify/relieve the sensitivities.

 

[muscleupcrohn]

Have you tried racetams/Noopept since becoming insensitive to things? Not suggesting to do it, but it’s common to use a choline source with racetams to prevent choline from becoming too depleted. I’ve also heard some people doing the opposite, and using a racetam when too much choline supplementation gives them an issue, although this approach seems sort of backwards as far as optimizing a nootropic stack is concerned, at least for a “normal” person.

How’s your sleep? Time? Quality?

 

[JoeJack101]

Have you tried racetams/Noopept since becoming insensitive to things?

I had used Piracetam in an effort to reverse what the Choline did. This was years ago, however. But I wrote down in my notes that it clearly didn't work, and that it did make me feel very fatigued when I used it. I'm certain it didn't work, because if there was an ounce of a chance that it was helping I would have continued to take it on a glimmer of hope that it gave me relief.

How’s your sleep? Time? Quality?

It's good. No issues. I've always slept a little over 8 hours if not more, so that's normal for me. Quality is good, I don't wake up during the night. I go to sleep rather quickly, and most night I sleep straight through.

 

[Ape McGrapes]

Maybe try some Wim Hof breathing and cold showers.

 

[JoeJack101]

Hey muscleupcrohn and others!

I have a theory here! Can you help me with this hypothesis?

Enhancement by cytidine of membrane phospholipid synthesis.
G-Coviella IL1, Wurtman RJ.

Abstract
Cytidine, as cytidine 5'-diphosphate choline, is a major precursor in the synthesis of phosphatidylcholine in cell membranes. In the present study, we examined the relationships between extracellular levels of cytidine, the conversion of [14C]choline to [14C]phosphatidylcholine, and the net syntheses of phosphatidylcholine and phosphatidylethanolamine by PC12 cells. The rate at which cytidine (as [3H]cytidine) was incorporated into the PC12 cells followed normal Michaelis-Menten kinetics (Km = 5 microM; Vmax = 12 x 10(-3) mmol/mg of protein/min) when the cytidine concentrations in the medium were below 50 microM; at higher concentrations, intracellular [3H]cytidine nucleotide levels increased linearly. Once inside the cell, cytidine was converted mainly into cytidine triphosphate. In pulse-chase experiments, addition of cytidine to the medium caused a time- and dose-dependent increase (by up to 30%) in the incorporation of [14C]choline into membrane [14C]-phosphatidylcholine. When the PC12 cells were supplemented with both cytidine and choline for 14 h, small but significant elevations (p less than 0.05) were observed in their absolute contents of membrane phosphatidylcholine, phosphatidylethanolamine, and phosphatidylserine, all increasing by 10-15% relative to their levels in cells incubated with choline alone. Exogenous cytidine, acting via cytidine triphosphate, can thus affect the synthesis and levels of cell membrane phospholipids.

I really do wonder if Cytidine was the culprit via up-regulation of phospholipid synthesis.

Remember that CDP Choline (cytidine 5'-diphosphate choline) is one of the types of Choline I was taking that did this to me. It seems that it stimulates the increased production of all the phospholipids such as PhosphatidylCholine, PhosphatidylSerine, PhosphatidylEthanolamine, etc.

How would I reverse this? How would I decrease the production of phospholipids? Assuming that Cytidine is the culprit.

 

[BlockBuilder]

POTS is usually a syndrome caused by another underlying disease. For example I know someone with POTS. She has Lyme disease. Did you ever find out what’s causing the POTS? Also what does the POTS have to do with your sensitivity to medication? You sound like my friend with Lyme disease. I’m going to show this thread to her. The way you’re speaking is just so similar to things she has said

 

[rascal14]

Doesn't Lyme disease go away within a few weeks usually?

 

[cubsfan815]

Doesn't Lyme disease go away within a few weeks usually?

I work with someone who battled Lyme disease for 2 years. She was like walking dead around our office.

 

[rascal14]

I work with someone who battled Lyme disease for 2 years. She was like walking dead around our office.

I didn't realize it ever lasted that long, that sounds awful.

 

[cubsfan815]

I didn't realize it ever lasted that long, that sounds awful.

Me neither. She would have long lasting coughing bouts, and she wasted away to nothing. She's fully recovered and all good now.

 

[JoeJack101]

POTS is usually a syndrome caused by another underlying disease.

POTS, Chronic Fatigue Syndrome, Lyme Disease, Myalgic Encephalopathy, Adrenal Fatigue Syndrome, etc. are synonyms for the same thing. It is highly doubtful that we going to solve the root cause for this disorder on here. I do believe that since I used to be super-sensitive to medicines and now I have the opposite problem that it is reversible, since it was shifted from one extreme to the exact opposite.

Can anybody help me with my Cytidine post above [see reply #21 on this thread]? If Cytidine up-regulates production of phospholipids, what does the opposite? How would somebody down-regulate production of phospholipids? Could this be related to my current problem of going from being super-sensitive to meds/herbs to the opposite?

 

[BlockBuilder]

Doesn't Lyme disease go away within a few weeks usually?

My friend has had Lyme disease for 25 years according to doctors and has been severely symptomatic for 10 years and her monthly prescriptions without insurance cost 18 thousand dollars per month. Thank god she has insurance. She has been being treated for roughly 3 years. That was NOT a typo. Her meds cost 18 thousand dollars a month

 

[pyrobatt]

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.

Note: My story is weird and hard to believe, but I beg of you to give me a chance because I really need help badly.

Simple story: I've had POTS Syndrome my entire life. All this means is that my autonomic nervous system is imbalanced or does not balance for homeostasis on it's own sometimes. It is very common with this condition for most people with it to have an unexplained hypersensitivity to medications. 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 CDP Choline instead of Ashwagandha after reading that Ashwagandha affects Choline receptors. Either Choline Bitartrate or CDP Choline is the culprit. 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.

My goal: To find out whatever the heck Choline did to me and reverse it. The Choline made me worse and worse and worse the more I used it.

Possible theory so far: POTS is caused by a malfunctioning sympathetic and 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 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!!!!

I need a list of what you're currently taking both scrip and non, I need a list of your age, weight and estimate of bodyfat. I need to know if you're a smoker or non, I need to know if you are currently involved in any physical exercise. I need to know any exposure to any harmful toxins(if you're a factory worker or have black mold in your house/stuff like that) I need to know what sti's you have been exposed to if any and I need to know what drugs scrip or non scrip you have....for the sake of this convo"experimented" with in the past or present.

For example, trazodone can cause a tachycardia with chronic use while at the same time"high doses" can damage your penis. This is a common insomnia "fix" and prescribed by doctors to treat chronic insomniacs. This can also cause low blood sodium levels, especially when used by athletes.

I can help if I know more information or at least try. Not trying to make you fill out a medical history form but kinda have to have the same info.

 

[muscleupcrohn]

Honestly, I still have a “gut feeling” that there’s more too this than just the choline supplementation. You said it took time, that as you continued to use it you gradually became more resistant to things. Perhaps it will gradually reset to your normal (hypersensitive) level? It seems rather unlikely that choline supplementation resulted in some permanent drastic change. Either way, a lack of sensitivity to supplements/drugs doesn’t seem like the most significant issue, as if you felt alright, you wouldn’t have to rely on things to try to make you feel alright.

As pyro said, the more info you give us, the better picture we’ll have.

How long has it been since you stopped using choline? Did you do anything particularly stressful/demanding? Job, family, hobbies, etc.

 

[JoeJack101]

Honestly, I still have a “gut feeling” that there’s more too this than just the choline supplementation.

I guarantee you that if you reacted this badly to a supplement and it cost you your everyday life, your job, your energy, your productivity, your career, your brain fog, etc due to how bad you felt 24/7... You would be pretty darn sure what the cause was and whether or not something else could be to blame. You would be able to EASILY tell if something as obvious as what foods you eat, your routine, your relationships, etc were affecting it. You think when I'm feeling this bad that I have the time or energy to worry about other things? Everything else in my life feels like peaches and cupcakes compared to this!

Here's what we know:
1. I have been repeatedly clinically diagnosed with POTS Syndrome, which is an autonomic nervous system disorder involving an overactive sympathetic (fight-or-flight) nervous system.
2. An extremely common symptom with this condition is sensitivities to medications & herbs.
3. Ashwagandha is an acetylcholine receptor stimulant/agonist. And it used to temporarily decrease my sensitivities.
4. Chamomile is an acetylcholine receptor depressant/antagonist. And it used to temporarily increase my sensitivities.
5. Cytidine 5'-DiPhosphoCholine is an intermediate in the generation of phosphatidylcholine from choline, and either that, aka CDP Choline, or Choline Bitartrate caused me to feel more and more fatigued, both mentally and physically, each and every time I took them. They also caused me to permanently become less & less sensitive to herbs & meds. There is a direct correlation.
6. The only way we can fix this is if we truly accept & research the actual cause. If we are researching other things about me, all of which are quite healthy, instead of scientifically getting to the bottom of exactly how & why that supplement(s) did that to me, I'll never get relief.

How long has it been since you stopped using choline? Did you do anything particularly stressful/demanding? Job, family, hobbies, etc.

There were times where I went 18+ months without either of the Choline supplements.... It didn't improve. No improvement on it's own by just waiting. And I'm still super-fatigued 24/7. I'm still unresponsive to most herbs & meds, some do the opposite now. I know it's hard to get people to believe me not being inside my body, but with meds & herbs not working properly anymore and being unresponsive, even basic cold meds & Tylenol don't work and just give me severe vomiting. This is going to be dangerous if I ever HAVE to take anything to save me from severe flu/pneumonia etc.

Nothing particularly stressful about anything. I've been blessed. Everything else in my life is extremely unremarkable in every way, so going into detail will just further sidetrack this conversation rather than focusing on helping to research the two supplements I took to gain a better understanding of exactly how they affect Phospholipids in the body. That's what I honestly believe I need help doing is... coming up with a true medical hypothesis on why one of those supplements did that and how to turn the "thermostat" back the other direction.

 

[muscleupcrohn]

So you also started feeling worse and worse when using choline, while also becoming less and less responsive to supplements, and just kept using it? Was the rate you started feeling worse the same as the rate at which you became less sensitive to supplements? Also, you say that we should focus on the actual cause, but wouldn’t that mean the issue you had before using the choline, the issue that caused the abnormal reaction to it and your fatigue? If not, don’t you run the risk of just swinging the pendulum too far to the other end of the spectrum by trying to remedy this problem with another supplement? Are you more tired/fatigued now after the choline, or just not responsive to things that had helped in the past, leading to you not being able to manage it as well as before? Are you suggesting that choline use both made you resistant to things, and also super fatigued? Permanently?

 

[Aleksandar37]

What type of doctor have you been to see? You need an autonomic specialist. What city, state do you live in? I can point you towards somebody, but you might have to travel if you're not near a major medical institution.

 

[Kiri]

I had the same symptoms, tried every thing every pils etc.. then I started Essential amino acid supplementation, no weakness, focus on point, became respond to some meds for the "positive test" so it worked and I do it for 1-2 months now and I also upped my calories, its like I absorb all from food now and I feel good and normal. i did this :
-wake up : on empty stomach 15g L-glutamine every morning after 30 minutes
5-15 gr essential amino acid blend, I started with Ajinomoto(5g EAA blend and now I use Kyowa aminos (15g blend) to be sure it works I started with a legit product

After my appetite improved, IBS, focus, procrastination all very slowly but I felt it within first 10 minutes I took it. So I see you understand a lot and you can do some research on "EAA therapy and mega dose l-glutamine" to repair stomach + intestinal lining(pilis), for exemple ~80% serotonin is produced in your gut. If you have enough money I would add living strains probiotics to it between a big meal (I mean you buy it refrigerated at your pharmacy)

Édit : +15-20 g L-glutamine before bed on empty stomach

 

[muscleupcrohn]

I has the same symptoms, tried every thing every pils etc.. then I started Essential amino acid supplementation, no weakness, focus on point, became respond to some meds for the "positive test" so it worked and I do it for 1-2 months now and I also upped my calories, its like I absorb all from food now and I feel good and normal. i did this :
-wake up : on empty stomach 15g L-glutamine every morning after 30 minutes
5-15 gr essential amino acid blend, I started with Ajinomoto(5g EAA blend and now I use Kyowa aminos (15g blend) to be sure it works I started with a legit product

After my appetite improved, IBS, focus, procrastination all very slowly but I felt it within first 10 minutes I took it. So I see you understand a lot and you can do some research on "EAA therapy and mega dose l-glutamine" to repair stomach + intestinal lining(pilis), for exemple ~80% serotonin is produced in your gut. If you have enough money I would add living strains probiotics to it between a big meal (I mean you buy it refrigerated at your pharmacy)

Édit : +15-20 g L-glutamine before bed on empty stomach

EAAs and glutamine seems safe enough to try I guess OP.

OP, I think people are hesitant to just throw out ideas, as if something as benign and commonplace as choline caused such severe, seemingly permanent adverse effects, it seems sort of dangerous to just try to reverse it with another supplement. Perhaps it would reverse it, or perhaps it would exacerbate it, or simply cause another problem altogether, with or without solving this one. Either way, I’d strongly suggest trying anything under a doctor’s supervision. Even if it’s just so they are aware in case something causes adverse effects, or they can monitor symptoms and whatnot, it’s probably best to have someone (a doctor) supervising your attempts to solve this issue. What if you take something that makes it worse? Us internet folks wouldn’t know if you didn’t come back and tell us, where if a doctor doesn’t hear from you for a while, they can check in on you to make sure you’re alright.

 

[HIT4ME]

POTS is usually a syndrome caused by another underlying disease. For example I know someone with POTS. She has Lyme disease. Did you ever find out what’s causing the POTS? Also what does the POTS have to do with your sensitivity to medication? You sound like my friend with Lyme disease. I’m going to show this thread to her. The way you’re speaking is just so similar to things she has said

This is funny because as I was reading through this entire thread, Lyme was right up at the front of my mind, but I am not so sure.

POTS, Chronic Fatigue Syndrome, Lyme Disease, Myalgic Encephalopathy, Adrenal Fatigue Syndrome, etc. are synonyms for the same thing. It is highly doubtful that we going to solve the root cause for this disorder on here. I do believe that since I used to be super-sensitive to medicines and now I have the opposite problem that it is reversible, since it was shifted from one extreme to the exact opposite.

Can anybody help me with my Cytidine post above [see reply #21 on this thread]? If Cytidine up-regulates production of phospholipids, what does the opposite? How would somebody down-regulate production of phospholipids? Could this be related to my current problem of going from being super-sensitive to meds/herbs to the opposite?

Your issue is that you take something and believe it only effects the one pathway you know about, refuse to accept anything more complicated, and then when something changes you blame that single pathway you know about and try to find the "antidote" . Change your thinking.

I need a list of what you're currently taking both scrip and non, I need a list of your age, weight and estimate of bodyfat. I need to know if you're a smoker or non, I need to know if you are currently involved in any physical exercise. I need to know any exposure to any harmful toxins(if you're a factory worker or have black mold in your house/stuff like that) I need to know what sti's you have been exposed to if any and I need to know what drugs scrip or non scrip you have....for the sake of this convo"experimented" with in the past or present.

For example, trazodone can cause a tachycardia with chronic use while at the same time"high doses" can damage your penis. This is a common insomnia "fix" and prescribed by doctors to treat chronic insomniacs. This can also cause low blood sodium levels, especially when used by athletes.

I can help if I know more information or at least try. Not trying to make you fill out a medical history form but kinda have to have the same info.

Yes!! - answer these questions. We need a list. Also - this may strike you as strange, but are you Indian, Middle-Eastern or Jewish by any chance?

I guarantee you that if you reacted this badly to a supplement and it cost you your everyday life, your job, your energy, your productivity, your career, your brain fog, etc due to how bad you felt 24/7... You would be pretty darn sure what the cause was and whether or not something else could be to blame. You would be able to EASILY tell if something as obvious as what foods you eat, your routine, your relationships, etc were affecting it. You think when I'm feeling this bad that I have the time or energy to worry about other things? Everything else in my life feels like peaches and cupcakes compared to this!

Here's what we know:
1. I have been repeatedly clinically diagnosed with POTS Syndrome, which is an autonomic nervous system disorder involving an overactive sympathetic (fight-or-flight) nervous system.
2. An extremely common symptom with this condition is sensitivities to medications & herbs.
3. Ashwagandha is an acetylcholine receptor stimulant/agonist. And it used to temporarily decrease my sensitivities.
4. Chamomile is an acetylcholine receptor depressant/antagonist. And it used to temporarily increase my sensitivities.
5. Cytidine 5'-DiPhosphoCholine is an intermediate in the generation of phosphatidylcholine from choline, and either that, aka CDP Choline, or Choline Bitartrate caused me to feel more and more fatigued, both mentally and physically, each and every time I took them. They also caused me to permanently become less & less sensitive to herbs & meds. There is a direct correlation.
6. The only way we can fix this is if we truly accept & research the actual cause. If we are researching other things about me, all of which are quite healthy, instead of scientifically getting to the bottom of exactly how & why that supplement(s) did that to me, I'll never get relief.



There were times where I went 18+ months without either of the Choline supplements.... It didn't improve. No improvement on it's own by just waiting. And I'm still super-fatigued 24/7. I'm still unresponsive to most herbs & meds, some do the opposite now. I know it's hard to get people to believe me not being inside my body, but with meds & herbs not working properly anymore and being unresponsive, even basic cold meds & Tylenol don't work and just give me severe vomiting. This is going to be dangerous if I ever HAVE to take anything to save me from severe flu/pneumonia etc.

Nothing particularly stressful about anything. I've been blessed. Everything else in my life is extremely unremarkable in every way, so going into detail will just further sidetrack this conversation rather than focusing on helping to research the two supplements I took to gain a better understanding of exactly how they affect Phospholipids in the body. That's what I honestly believe I need help doing is... coming up with a true medical hypothesis on why one of those supplements did that and how to turn the "thermostat" back the other direction.

If you hadn't had choline for 18 months then it wasn't directly the cause.

Do you smoke? WE REALLY need to know what you are taking for prescription medications and supplements at this point. I have a couple theories, but it's hard to go in the right direction without knowing more.

I know this seems to have really fugg'd up your life, and you have to blame it on something - but if you already knew what the problem was and the cause, you wouldn't be here. We are trying to help and you need to let go of the ideas you have a little if you want us to be able to bring new ideas to the table.

 

[HIT4ME]

Oh, and do you smoke? Do you ever use any recreational drugs? How does alcohol effect you?

 

[HIT4ME]

Oh, sorry for multiple posts - have you ever had any type of surgery?

Where did you get your choline supplements from?

 

[pyrobatt]

This is funny because as I was reading through this entire thread, Lyme was right up at the front of my mind, but I am not so sure.



Your issue is that you take something and believe it only effects the one pathway you know about, refuse to accept anything more complicated, and then when something changes you blame that single pathway you know about and try to find the "antidote" . Change your thinking.



Yes!! - answer these questions. We need a list. Also - this may strike you as strange, but are you Indian, Middle-Eastern or Jewish by any chance?



If you hadn't had choline for 18 months then it wasn't directly the cause.

Do you smoke? WE REALLY need to know what you are taking for prescription medications and supplements at this point. I have a couple theories, but it's hard to go in the right direction without knowing more.

I know this seems to have really fugg'd up your life, and you have to blame it on something - but if you already knew what the problem was and the cause, you wouldn't be here. We are trying to help and you need to let go of the ideas you have a little if you want us to be able to bring new ideas to the table.

American white boy, sorry to dissapoint haha. I used to be in the law profession in another life. That comes through sometimes.

 

[muscleupcrohn]

American white boy, sorry to dissapoint haha. I used to be in the law profession in another life. That comes through sometimes.

I think he was talking to OP even though he quoted you (building on your questions).

 

[pyrobatt]

I think he was talking to OP even though he quoted you (building on your questions).

Ah I see. Kinda like races having predisposition to diabetes for example.

 

[muscleupcrohn]

Ah I see. Kinda like races having predisposition to diabetes for example.

That’s what I assumed anyway haha.

 

[HIT4ME]

American white boy, sorry to dissapoint haha. I used to be in the law profession in another life. That comes through sometimes.

lol - a law professor? Interesting...can't be disappointed with that...but....

I think he was talking to OP even though he quoted you (building on your questions).

Ah I see. Kinda like races having predisposition to diabetes for example.

That’s what I assumed anyway haha.

Yes, muscleupchron is correct - I meant to ask the OP that question....sorry for the confusion.

There are some specific acetylcholine related diseases that are common in some of those races, although I believe any race can have them.

As everyone is saying, I'm no doctor.....

 

[muscleupcrohn]

As everyone is saying, I'm no doctor.....

Did you at least stay at a Holiday Inn?

 

[HIT4ME]

Did you at least stay at a Holiday Inn?

I can't even afford that....

 

[BlockBuilder]

What state do you live in OP?