Intense cramping after 20mg of mestinon. Anyone else?

[WantedAlive]

@ChookityPop Your symptoms sound more like side effects to Mestinon, as your dose 20mg is quite low. I observe muscle twitching is a rare side effect for some people. You're probably just intolerant to it.

My experience with Mestinon as a PwME is that it improves blood flow. I discovered this when drawing blood which is normally a slow process with 'sticky blood', but on mestinon I can fill vials quickly. Upon exploration, I find AChE is raised in inflammatory diseases, with higher AChE enzyme activity in red blood cells in vascular disease. I found a complex association between AChE activity status, ACh stimulation, membrane integrity, deformability, and NO release or NO, O2 and CO2 gas exchange. So I've wondered if mestinon, by inhibiting AChE, is improving the ACh induced NO efflux from red blood cells, possibly improving gas exchange. I can't say it ever helped my exercise intolerance though, as Systrom was studying.

 

[Pyrrhus]

I can't say it ever helped my exercise intolerance though, as Systrom was studying.

Yeah, I never understood why Systrom was recommending a pro-cholinergic drug like Mestinon.

To me, it seems like his research would lead to a recommendation of a pro-noradrenergic drug like Atomoxetine.

When I take 10mg Atomoxetine, it feels like I am completely recovered for about 8 hours.
Then I crash for about 4 weeks.

 

[WantedAlive]

When I take 10mg Atomoxetine, it feels like I am completely recovered for about 8 hours.
Then I crash for about 4 weeks.

That's almost worth it after 6 years!

 

[Learner1]

@Learner talks about using mestinon in this thread:https://forums.phoenixrising.me/thr...s-the-pros-and-cons.81564/page-2#post-2301140

It sounds like she switched to Huperzine A instead.

Edit: That should have been @Learner1. Not sure if it will tag her now. I think one of the moderators said adding it later won't. You could possibly message her though if you have questions.

Hi, no, it didn't tag me after the fact, but I found this post.

Yes, I've used pyridostigmine, neostigmine, and Huperzine A. I greatly prefer Huperzine A as it's more effective with fewer side effects.

When it helps CFS/ME patients, then these CFS/ME patients have undiagnosed mild MG

I looked up MG, and I don't believe I have that at all.

interesting. are you familiar with david systrom? he is doing some great research on me/cfs patients (i’m one of his patients) and i believe he is collaborating with omf on a mestinon trial. through the invasive exercise testing he’s done he’s discovered some unique findings in cfs that blood pumping to the heart and muscles are abnormal in a subset of cfs patients, and this is where he discovered the usefulness of mestinon.

i certainly do agree it’s likely that a certain percentage of cfs patients have mg but are undiagnosed and respond to mestinon. but i think it’s likely there are also reasonable explanations for why mestinon does help certain patients even without having mg. there’s also some research on mestinon and pots. responders main improvement from the drug was fatigue. it also drops my heart rate substantially so it certainly helps avoid surpassing my AT so easily as well

If you're a patient of Systrom's, can you please tell him that not all of us can take the FDA approved versions of pyridostigmine, due to allergens in all forms of it, and due to what the FDA told me were market manipulations in the raw ingredient market, it can no longer be compounded. He makes it sound like Mestinon is the only thing that works for POTS, and it just isnt. Though I did try neostigmine, because I was able to have that one compounded, I found it had a shorter half-life, and then I found Huperzine A, which was cheap, effective, and didn't give me nasty intestinal symptoms.

Tell him Huperzine A works and ask him to study it, please.

I'm not familiar with the name

Yeah, I never understood why Systrom was recommending a pro-cholinergic drug like Mestinon.

To me, it seems like his research would lead to a recommendation of a pro-noradrenergic drug like Atomoxetine.

When I take 10mg Atomoxetine, it feels like I am completely recovered for about 8 hours.

Er, atomoxetine is Straterra which is an SNRI medication, which readjusts how the body processes norepinephrine. It is used for depression, anxiety, neuropathic pain and and ADHD. Risks include serotonin syndrome and suicidal thinking, as well as mitochondrial damage.

"We found that the highest concentrations of ATX in neuron-like cells, caused cell death and an increase in cytosolic and mitochondrial reactive oxygen species, and alterations in mitochondrial mass, membrane potential and autophagy."

From:
https://www.nature.com/articles/s41598-019-49609-9

It doesn't seem a good idea to prescribe this to just any old POTS patient.

There are reasons we may become depleted in acetylcholine, including taking drugs that deplete it, like benadryl. It has been linked to dementia, Alzheimer's and Parkinson's.
Symptoms of low acetylcholine include:

• You frequently struggle to find the right word.
• You lose your train of thought during conversations.
• You can’t follow plots in movies and books.
• You can’t recall something you just read.
• You often misplace everyday items like keys, phone, and glasses.
• Your overall reaction time is slow.
• You know or suspect that you’ve got ADHD.
• Your sense of direction is poor and you frequently get lost.
• You have poor muscle tone and find it hard to exercise.
• You crave fatty foods.

Too much acetycholine isn't good either. My doctor told me to look for an acetylcholine drug scorer online, where you can type in the meds you're taking and it'll tell you whether you have a positive or negative acetylcholine balance. This would probably help you figure out if it would be worth trying a medication that would increase acetylcholine.

 

[nerd]

Tell him Huperzine A works and ask him to study it, please.

If Huperzine works for you, you might also consider Rivastigmine. It's very similar to Huperzine, also an Alzheimer's medication, and is purer than Huperzine. I guess it depends how dose-dependant we are as CFS/ME patients. My experience with Huperzine is that the 200 mcg just aren't sufficient to make a lot of difference. May I ask what dose you take?

By the way. The MG that you can look up quickly is the late onset type, progressed to high severity. Mild MG and other MG subtypes aren't diagnosed normally. It's disregarded just as CFS/ME is. The symptoms are very unspecific as well, GIT issues, sensitivity to light, headache, air hunger which isn't only medicated by the hypoxia gene but predominantly by a low airway smooth muscle tone, and generally low muscle tones of the skeletal muscles (depending on the MG type), so basically muscle weakness and exhaustibility of the muscles by repeated stimuli.

 

[Learner1]

My experience with Huperzine is that the 200 mcg just aren't sufficient to make a lot of difference. May I ask what dose you take?

I take 200mcg Source Naturals. That does was just a guess my neurologist made. If it doesn't do enough for you, take more. 😃

By the way. The MG that you can look up quickly is the late onset type, progressed to high severity. Mild MG and other MG subtypes aren't diagnosed normally. It's disregarded just as CFS/ME is. The symptoms are very unspecific as well, GIT issues, sensitivity to light, headache, air hunger which isn't only medicated by the hypoxia gene but predominantly by a low airway smooth muscle tone, and generally low muscle tones of the skeletal muscles (depending on the MG type), so basically muscle weakness and exhaustibility of the muscles by repeated stimuli.

Nope, I don't have most of those symptoms, but I do know that there are some people around here who do, so good of you to point this out.

My muscle weakness symptoms tend to be because I blow through my glycogen stores and I have an AMPD1 mutation, which other people around here do as well.

 

[nerd]

I take 200mcg Source Naturals. That does was just a guess my neurologist made. If it doesn't do enough for you, take more. 😃

Sometimes, I take 400 mcg. But this is the maximum that has been used in trials, as far as I know. So there isn't a lot of safety data for higher doses. I might try switch to Rivastigmine if I can somehow source it or get it prescribed.

 

[ChookityPop]

I take 200mcg Source Naturals. That does was just a guess my neurologist made. If it doesn't do enough for you, take more. 😃
Nope, I don't have most of those symptoms, but I do know that there are some people around here who do, so good of you to point this out.

My muscle weakness symptoms tend to be because I blow through my glycogen stores and I have an AMPD1 mutation, which other people around here do as well.

Where did you find out about the gene mutasjon?

 

[Learner1]

Where did you find out about the gene mutasjon?

23andme and Gene DX results run through Enlis. There's also discussion around here on it. And, I joined the AMPD1 FB group, entry requires having the mutation.