Who doesn't benefit from acetylcholine supplements?

Do you notice benefits from acetylcholine supplementation?

  • I primarily have FM and notice benefits

    Votes: 0 0.0%
  • I primarily have FM and don't notice benefits

    Votes: 2 50.0%
  • I primarily have ME and notice benefits

    Votes: 1 25.0%
  • I primarily have ME and don't notice benefits

    Votes: 1 25.0%

  • Total voters

Larry Sprat

New Member
Hello. I have SFN, interested in trying pirenzepine, but wary of online pharmacies. Can anyone suggest a reliable source, what dosage to order, and what the pill looks like?




Well-Known Member
I have an update on my experiences with acetylcholine, which might interest those with FM and neuropathies.

A few months ago my cardiologist allowed me to experiment with Mestinon (pyridostigmine), which helps to bathe the nerve endings at the muscles in acetylcholine -- so this was the direct opposite of the experiment that started this thread.

Cort has reported on Mestinon periodically. It is sometimes used off-label for POTS, but I have high blood pressure, as well as very stubborn orthostatic hypertension, which is a lesser-known cousin to POTS, and is likely one big reason I have to remain reclined for so much of the day (my reclining BP is fairly normal, but it's raised constantly when sitting or standing). Mestinon can help POTS, but the mechanism isn't understood, so we were hoping it might paradoxically help with orthostatic hypertension as well.

Unfortunately, the Mestinon did nothing for my standing blood pressure. It might have even raised it slightly at first (but now I'm back to my usual readings). But it did do some other rather remarkable things.

The initial effects at the peripheral level were similar to my experiment with pirenzepine, in that it clearly exacerbated some of my routine neuropathic symptoms (not the burning so much as the pins and needles). But at the same time, it felt like it tightened my peripheral muscles -- in a good way. Like they very quickly felt stronger and more toned. This was both an internal feeling and a tactile feeling (like when stretching, my calves literally felt less flabby to my fingers).

Long story short, I'm now permanently taking 1/2 of the 180mg time-released version per day, and on my exercise days I take a second half midday to support the extra activity (on the alternating recovery days I just take the first half in the morning). And I can't imagine going without it now. It reminds me a little of Adderall (which I have on hand for emergencies only, since it makes me crash pretty bad), except that the stimulating effects are strictly contained to the periphery, and there's no crash. I still have to rest as before, but I can already tell that the Mestinon encourages and rewards exercise. (I have upcoming surgery, so I won't be able to fully test the benefits of more exercise until I recover.) I definitely feel stronger and less foggy for some reason.

THE key was to get the dosage correct. I spent the first month experimenting with cutting 60mg pills into quarters to finally arrive at my current dosage, which happens to match the time-released version. Too high a dose caused painful digestive cramps, and the neurological activity was less tolerable. But as I mentioned about the pirenzepine experiment, learning to live with a tolerable level of neuropathy has its benefits: despite nerve action being annoying, it can be energizing and confidence-inspiring to more fully feel skin surfaces and muscle tone -- as long as you get the balance correct.

One more note on the Mestinon. There are no contraindications with gabapentin, but I concluded that the two drugs don't play well together. So I stopped my first dose of gaba in the mornings, and now only take one to two 300mg capsules in the evening and before bed. For years I'd been on three per day, and I always quickly knew if I'd missed a dose because I'd get elevated neuropathies and brain zaps. With the Mestinon in the mix, I now get no side effects from missing gaba doses, unless I don't take it at bed time, in which case my sleep is disrupted with neurological symptoms. Go figure.

Anyway, I'm not trying to say Mestinon and pirenzepine are the same. Obviously they are not. But it's fascinating to observe the similar effects on the nerve endings, which I assume is the result of direct manipulation, nothing much more. It's like both drugs capture the attention of the nerves, which feels very similar in the mind, but the Mestinon encourages the muscles to be more involved, which is making me feel stronger in the long run. I didn't take the pirenzepine long enough, but I have to assume it would not have this same beneficial effect (and of course it comes with risks not associated with the Mestinon, which has a pretty safe profile).


Active Member
The air in airplane cabins comes directly from the jet engines.

The air comes from upstream of where the fuel is injected, with a huge pressure difference preventing molecules from moving backwards, so don't worry about fuel molecules getting into the cabin air.

Get Our Free ME/CFS and FM Blog!

New Threads

Forum Tips

Support Our Work



Shopping on Amazon.com For HR

Latest Resources