Intense cramping after 20mg of mestinon. Anyone else?

[ChookityPop]

I took 20mg of mestinon. and now I have intense muscle twtitching all over my body. My whole body are twitching quite intensely. and my tongue is effected too, idk how, It makes it difficult to speak.
my tongue isnt numb, but almost feel like it
I think I experienced this a few months back after taking 20mg too
it sucks so bad. Anyone else experienced this?

 

[nerd]

I guess you overdosed. Was this your first dose? Mestinon is indicated for MG, not for CFS/ME.

 

[Judee]

@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.

 

[nerd]

It sounds like she switched to Huperzine A instead.

Huperzine A makes sense because it targets different cholinergic receptors, especially of the brain region, while Pyridostigmine targets muscarinergic receptors only. But these aren't the only options. Not only Huperzine A, many other Alzheimer's agents target AChE (10.2174/1570159X11311030006). You'd have to look for each of them if they make sense with your own smooth muscle, skeletal muscle tones, and brain receptors.

 

[Zebra]

Hi, @ChookityPop

My neurologist had me start out with just 1/4 tablet 2 to 3 times daily for a week.

Then bump up to 1/2 tablet, 3/4 tablet, then full tablet.

So, you may need to let that 20mg leave your system and try again at a much lower dose.

I now take 60 mg twice a day. Sometimes I take an additional 30 mg in the evening.

Hope my experience helps you.

Best regards,
Z

 

[dylemmaz]

i started with 30mg of mestinon early in the morning on an empty stomach and had twitching problems as well as terrible stomach pains. they both went away after a few days. i would lower your dose a bit and then slowly build up hoping side effects subside.

mestinon helps my energy levels quite a bit so it’s worth continuing to trial. david systrom finds it helps about 30% of cfs patients

 

[nerd]

mestinon helps my energy levels quite a bit so it’s worth continuing to trial. david systrom finds it helps about 30% of cfs patients

This is just my opinion. When it helps CFS/ME patients, then these CFS/ME patients have undiagnosed mild MG. MG is a very similar disease, not only from a symptomatical perspective but also from an immunological and serological perspective. Unfortunately, many clinicians still believe that MG can either be severe or it doesn't exist.

 

[ChookityPop]

I guess you overdosed. Was this your first dose? Mestinon is indicated for MG, not for CFS/ME.

Ive done mestinon when I get very fatigued in my stomach muscles. Though only 10mg. It has happened before at 20mg.

 

[ChookityPop]

Hi, @ChookityPop

My neurologist had me start out with just 1/4 tablet 2 to 3 times daily for a week.

Then bump up to 1/2 tablet, 3/4 tablet, then full tablet.

So, you may need to let that 20mg leave your system and try again at a much lower dose.

I now take 60 mg twice a day. Sometimes I take an additional 30 mg in the evening.

Hope my experience helps you.

Best regards,
Z

Thank you. Thats very interesting. I only do 10mg when I get very fatigued in my stomach muscles.

Maybe I should try to build up resistance to it as you have. Have you gotten the same muscle twitching "attack" as I did?

And can I ask how mestinon has helped you?

Best regards
C

 

[ChookityPop]

i started with 30mg of mestinon early in the morning on an empty stomach and had twitching problems as well as terrible stomach pains. they both went away after a few days. i would lower your dose a bit and then slowly build up hoping side effects subside.

mestinon helps my energy levels quite a bit so it’s worth continuing to trial. david systrom finds it helps about 30% of cfs patients

Thanks for you input!

Does it help you in other ways than energy?

 

[ChookityPop]

This is just my opinion. When it helps CFS/ME patients, then these CFS/ME patients have undiagnosed mild MG. MG is a very similar disease, not only from a symptomatical perspective but also from an immunological and serological perspective. Unfortunately, many clinicians still believe that MG can either be severe or it doesn't exist.

Interesting. I think that could very well be true. Same thing with small fiber neuropathy for example. Everything isn't just black and white as humans tend to think.

 

[dylemmaz]

This is just my opinion. When it helps CFS/ME patients, then these CFS/ME patients have undiagnosed mild MG. MG is a very similar disease, not only from a symptomatical perspective but also from an immunological and serological perspective. Unfortunately, many clinicians still believe that MG can either be severe or it doesn't exist.

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

 

[dylemmaz]

Thanks for you input!

Does it help you in other ways than energy?

yes, mestinon helps with my pots. lowers my heart rate quite a lot. other than this improvements have been in energy and i believe exercise intolerance. my quality of life has generally improved quite a bit since including it

 

[nerd]

interesting. are you familiar with david systrom?

I'm not familiar with the name.

cfs that blood pumping to the heart

This is likely due to reduced smooth muscle tone. Reduced smooth muscle tone also affects some types of myasthenia, e.g. ocular MG.
So when CFS/ME patients also have neuromuscular abnormalities, you can as well classify them as mild MG, because MG has a good treatment prognosis.

it also drops my heart rate substantially

It's not only via the venous smooth muscle tone (M3-specific) but also via the voltage-gated Ca2+ channels in the heart (M2-specific) that AChEs can mostly resolve the CFS/ME pathology on heart function.

but i think it’s likely there are also reasonable explanations for why mestinon does help certain patients even without having mg

Just a matter of definition. My argument just is that there are more treatment options when MG is co-diagnosed. More than just AChE inhibitors.

When CFS/ME patients don't have neuromuscular issues in the skeletal muscles, it's less likely to be associated with MG serology. This means that there might be better AChE options than pyridostigmine. The best way to identify which AChE is best is a screening of the M1-M5 muscarinergic AChR antibodies. For CFS/ME, it's often M2, M3, and M4. Rivastigmine, just like Huperzine A, is more active in the nervous system and not so much in the skeletal muscles or neuromuscular junctions. Unfortunately, not much is known of the different AChE inhibitors' interactions in smooth muscles. Rivastigmine is associated with minor declines in heart rate, but not as much as you'd desire. But these studies haven't been done on tachycardia patients anyway. Besides, Rivastigmine also has a good safety profile and muscle cramps from it are very rare.

 

[Judee]

interesting. are you familiar with david systrom? he is doing some great research on me/cfs patients (i’m one of his patients)

Kind of a dumb question but did he test you for the MG antibodies? I can't remember what they are called right now but I know years ago when I had a good PCP, he tested me for those.

I'm not familiar with the name.

He's pretty good. I think he basically fell into treating ME patients because he started to get a lot of referrals. I had posted a yt interview with some of what he said in this thread. https://forums.phoenixrising.me/threads/at-a-loss-now.78254/page-2#post-2241484

 

[Pyrrhus]

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.

For anyone unfamiliar with David Systrom's work, here is a good discussion:
https://forums.phoenixrising.me/thr...patients-with-me-cfs-joseph-et-al-2021.82907/

Note that his findings may apply equally well to ME patients with anti-cholinergic antibodies, as well as to ME patients without anti-cholinergic antibodies.

 

[Pyrrhus]

This is just my opinion. When it helps CFS/ME patients, then these CFS/ME patients have undiagnosed mild MG. MG is a very similar disease, not only from a symptomatical perspective but also from an immunological and serological perspective. Unfortunately, many clinicians still believe that MG can either be severe or it doesn't exist.

That's really interesting.

These overlaps in diagnoses can be very annoying to separate, especially when some of the diagnoses lack clear, unambiguous diagnostic tests!

 

[ChookityPop]

This is just my opinion. When it helps CFS/ME patients, then these CFS/ME patients have undiagnosed mild MG. MG is a very similar disease, not only from a symptomatical perspective but also from an immunological and serological perspective. Unfortunately, many clinicians still believe that MG can either be severe or it doesn't exist.

How high dose is it normal to hit before noticing benefits?
I guess it varies, But I havent tried higher than 20mg.

 

[Pyrrhus]

Note that his findings may apply equally well to ME patients with anti-cholinergic antibodies, as well as to ME patients without anti-cholinergic antibodies.

Sorry if this is off-topic, but for anyone interested in anti-cholinergic antibodies, here are some related discussions:
https://forums.phoenixrising.me/thr...inergic-receptors-in-patients-with-cfs.40109/
https://forums.phoenixrising.me/thr...inergic-receptors-in-patients-with-cfs.40123/
https://forums.phoenixrising.me/thr...dies-cause-symptoms-in-pots-oh-and-cfs.46638/

 

[nerd]

How high dose is it normal to hit before noticing benefits?
I guess it varies, But I havent tried higher than 20mg.

This depends on the severity and the antibody count respectively. I guess that it might also be worse during PEM. Treatment-resistant MG patients who are just on AChE inhibitors also have to be careful with any kind of infection because the immune system can make things worse quickly. So I think antibodies are just the baseline, but during PEM, the effect might be greater. This doesn't necessarily mean that higher doses help and don't simply cause more adverse effects. The current generation of AChE inhibitors isn't specific enough. Muscarinergic agonists would be more specific but they are more for emergency use, no sustainable solution. Perhaps, we'll see a new generation of drugs, receptor-specific modulators that can achieve this one day.