Hello all,

I just joined today for the purpose of asking a question. I searched through the forum and was unable to spot a similar topic, though of course it's possible I missed it. I apologize if I'm being redundant.

My question: are choline supplements contraindicated with Mestinon?

I don't thoroughly know the science behind behind this. I know that Mestinon prevents the breakdown of acetylcholine so that more can be absorbed.

This is similar, in a way, to an SSRI; an SSRI inhibits the reuptake of serotonin so that more can be absorbed. And I know that if one is on an SSRI, serotonin supplements are contraindicated as they can cause serotonin syndrome. This led me to wonder about choline supplements in combination with Mestinon; are they contraindicated? Would taking them together run the risk of cholinergic shock?

I currently take Mestinon, 60mg four times daily. I don't take it for myasthenia gravis, however; I take it for dysautonomia and gastroparesis. I'm curious and would like to try a choline supplement, but am wary of possible contraindications in light of what I know about SSRIs.

Hi, Cometcatcher. Like the name! I'm a science nerd.

Choline is a B vitamin. Most B vitamins are good for you, depending upon the dose. B6, for example, is not one you should have too much of, especially if you have a neuropathy.

Choline, and B12, are precursors to acetylcholine. Technically, I suppose you could get too much choline and that might lead to too much acetylcholine, which is not good for anyone, MG or not.

Cholinergic "shock" is not really the right term. It's called a cholinergic crisis or cholinergic toxicity.

You might want to talk to your doctor about dose amount or frequency. Also, since gastroparesis is the issue, you may want to talk to them about Mestinon syrup. You can titrate it more easily and it absorbs in the GI tract better.

More isn't necessarily better with Mestinon because you can get too much acetylcholine. Perhaps taking it every 4 or 5 hours. Do not change anything unless you talk to your doctor. An MG expert can give you more advice on dosing, even if you don't have MG. It might be a good idea to consult once with one!

Did they ever figure out why you have dysautonomia?

I hope that answers your questions. Just supplement sensibly. You don't want to do more harm than good.

Annie

Finally, a response! And a helpful one! I'm glad you like my name, ha ha. Hooray for science nerds.

I didn't know choline was B-vitamin related. I'm interested in choline not only for the production of acetylcholine but also because it helps other neurotransmitters along. Brain fog is a monster for me. I guess I'll really just have to ask my neurologist about the risk of cholinergic crisis (and I don't know why I always call it "shock!" I've read "crisis" a hundred times and yet it's like my fingers are on some strange autocomplete when I type it).

Dosing frequency is tricky. It's strange, because I feel like the Mestinon affects different parts of my body at different... rates, almost. It takes quite a lot of it to make my guts starts to move, but then, at that dose, I start to have trouble breathing. Do you know if that's a common problem? Having different parts of your body respond at different levels?

They haven't found out what's causing the dysautonomia, and it doesn't look like they're going to. Fortunately, it is mostly only the GI issues, brain fog, and nerve pain. Which are, of course, maddening, but less than what many others with the condition have to deal with.

Thank for the feed back.

Choline was lumped into the B-vitamin group many years ago, because it was not really understood. That vitamin group has other things also lumped in like inositol, and carnitine. It is mostly an historical thing.

Choline is a precursor for cell wall membranes as well as for
acetylcholine, the neurotransmitter.
http://en.wikipedia.org/wiki/Choline

Choline is essential for life. Eggs are a very high source of it from the diet.

Thanks for the info, mrsD. Any idea whether choline is safe to take with Mestinon? I've certainly been eating a lot of eggs with no ill effect, thought I'm sure the choline supplements contain more than the eggs.

I have no way of knowing. The body is pretty complicated, and choline is used for many many things other than making the neurotransmitter.

Since Mestinon has been around for decades, I would think using choline would appear in the drug information about it, as a warning etc.

This is the results of a drug checker for the combination of
Mestinon + choline:
http://www.drugs.com/interactions-ch...49-0,1971-2061

Nothing has been reported as yet.

Yours is a good question. A lot depends on whether you have Myasthenia Gravis (autoimmune) or Congenital Myasthenic Syndrome (genetic). I can only speak to those with myasthenic syndrome, the genetic version of MG, and my own journey to living an OPTIMAL life.

Anyway, I'm still searching for historical and NIH material connected with the subject of choline supplementation. I, too, have dysautonomia, cholinergic dysautonomia, to be exact. Even before Mestinon I had dysautonomic symptoms like hypothermia. Here's the kicker, my dysautonomic symptoms got worse when I hit perimenopause. Perimenopause was the trigger to setting off 3 genetic mutations, hence 3 neuromuscular disorders. Hypokalemic Periodic Paralysis type 2 (HypoKP2) because loss of progesterone. Progesterone is a reproductive hormone which when diminished, along with estrogen, kicks off perimenopause. As of 2011, scientist now know there is a correlation between progesterone and potassium, so every time I had a menstrual cycle I had profound muscle fatigue to the point of paralysis. I also have Paramyotonia congenita (PMC), and am being evaluated for Congenital Myasthenic Syndrome (CMS). Because I take medications and supplements for the the first two and can now filter out what's not PMC and HypoKPP2, I was able to take note of the specifics of other symptoms.

That being said, for some unknown reason my neurologist put me on Mestinon, but it really helped with my symptoms. He just gave me the prescription and told me to test out what dosage worked for me from the 120 mg. Well, later, when it became plain I was dependent on it for my symptoms, he seemed nonchalant about me being on it, doubting I had CMS, so I came off to test whether I really had a need and almost died. I started having cerebral vascular hypoxia which caused a mini-stroke, violent heart strokes, arrhythmias unrelated to HypoKPP2 (low potassium), the inability to make my own tears, saliva, sweat, nasal mucous or bronchial mucous, incontinence, etcetera. Dysautonomia is dysfunction of the autonomic nervous system, which seems to accompany many with neuromuscular disorders, but mine is directly linked with insufficient acetylcholine. We're thrown out of whack due to the disorders, so then we have dysfunction. I now take 120 mg at bedtime to prevent the cerebral vascular events, which included passing out upon waking to the alarm clock and a mini-stroke. I asked for an increase in my prescription, but instead got a referral to the Mayo clinic, but, hey, I work a 40 hour a week shift, fortunately from home being on medical accomodation, so I can't NOT treat my symptoms and didn't know when I was going to get an appointment with a Mayo doctor. I was still having adverse symptoms so went to a Myasthenia Gravis group for advice, and they helped me determine an OTC solution, which was Huperzine A. I was able to resolve daytime symptoms with 50 mg every other day, 100 mg on alternate days. At that time it was enough. I'm now exacerbating, so now take 200 mg upon waking, and another 200 mg in the afternoon. Now I get to the point, which is to say that all Mestinon and Huperzine A do is prevent a certain enzyme from breaking down the acetylcholine produced from your nerve cells, but what if you aren't producing enough acetylcholine to begin with. There are many types of myasthenic syndromes, some involve premature breakdown of acetylcholine, others can involve the nerve cells not producing enough acetylcholine to begin with. Because post-menopausal women are deficient in choline anyway, due to a diminished amount of estrogen, upon which choline production is dependent in women, scientists say that choline deficiency causes 1 in 3 post-menopausal women non-alcoholic fatty liver disease, 400 to 500 mg is recommended. Having a bottle of choline chloride from my early post-menopausal days, I started with 1400 mg, (3 times the recommended dosage), and my thigh-hip-glute muscles had significantly less weakness, Gower's sign is nearly gone, and I could produce enough saliva so that i did not gag to the point of vomiting when brushing my teeth. My neuro knows about me being on Hup A, but I've only been on the choline chloride for 3 days and am seeing this kind of improvement. Once I see the Mayo doctors they may suggest a drug called 3,4 di-aminopyridine, which increases acetylcholine productions from the nerve, but this works until then.

Now my goal is to separate CMS from my cholinergic dysautonomia. Just the very specificity of having cholinergic dysautonomic suggest a diagnosis of CMS. Anyway, I'll let the Mayo doctors do their genetic testing.

Note: I have gastrointestinal paralysis, too, which is not corrected with Mestinon, but only with the drugs and supplement I take for HypKPP2, however, I also have a contrary diagnosis of fast gastric emptying, a symptom of cholinergic dysautonomia. This hodge-podge of symptoms is the consequence, of course, of having multiple disorders.

Also, here's a caveat. Because i take N-Acetyl-cysteine to control insulin spikes, and congestion due to concurrent respiratory infections, along for acetyl-l-carnitine and acetyl-l-carnitine arginate for my cognitive issues and to help Mestinon with the nighttime cerebral vascular events, I'm being supplied with the necessary "acetyl groups" to make acetylcholine. I don't think choline chloride alone could help me. Also, taking choline alone with these acetyl group supplements wouldn't be enough, because it's my belief I'd probably have to take a significantly increased dose of choline chloride to meet my medical needs. I'm hoping that 3,4 di-aminopyridine is FDA approved soon so I don't have any issues getting it prescribed.

Finally, I found one article on supplementation, but it's from 1980. I'm continuing my search.