Mestinon?

kangaSue

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Marylib

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I think I can safely say that I am a mestinon pysridostagmine responder. Current dose is 30 mg 3x per day, but I have been prescribed up to 60 mg 3x per day. I haven't tried the higher dose yet. But I did find at one time that the lower dose ceased working so well. Was originally prescribed it for POTS, but have found that it helped with other symptoms as well, including cognitive dysfunction, dry eyes, constipation, etc.

I have not found improvement in a key symptom, which is non-restorative sleep. It is still the holy grail for me. Without restorative sleep, nothing works in any consistent fashion. I am back to being a vegetable. Probably in the 20-30% range. I use the Dr. Bell scale in terms of severity.

I do have at times, the muscle cramps, which are a pain, also stomach pain, but this is intermittent. I can't believe I am actually able to spell at times. Though I still have to heavily edit everything I write. So forget about the spelling part!

For POTS, I like ivabradine - but most of all IV saline infusions. But travelling to a hospital or infusion room makes the IV saline nearly impossible.

No improvement in PEM/PENE. My symptoms have not been digestive/ gastro symptoms. I have always been mainly in the cognitive dysfunction category - and of course the lousy or non-existent sleep.
 
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Marylib

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I forgot to say - of course! - that I also rely on methylphenidate ritalin. Not at the time of this writing, but in general I have to use it to get anything done at all. I used to be able to use it less frequently but I got tired of being bedbound and no longer care about the horrible feelings when it wears off. Cannabis is the best thing I have found for easing the lousy (to put it mildly) feeling of when the ritalin wears off. Oddly, a bit of alcohol can help with this when I cannot get cannabis. Fortunately I don't seem to be alcohol intolerant at the moment. So bottoms up! Until I can get cannabis again. I am 66 years old by now and little matters to me except the present moment.
 

Silencio

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Usually I say to stick with it and see if your body gets used to it. But this is such a strong reaction, I think it's worthwhile for you to be in touch with your doctor, describe what you're feeling, and get their opinion. Maybe this isn't the right medicine for you. Or maybe you could cut the pills and start on a lower dose.
Hi @RebeccaRe and @Mel9, I kept going with trying it. I seemed to tolerate 15mg after a few days. Yesterday I tried a 30mg dose after breakfast, seemed ok. Today I took 30mg again, 2 hours before breakfast. This time, all hell broke loose. My muscles all over my body started popping and twitching. Around my eyes were jumping so my vision got ten times more weird than it usually is. I couldn’t control my tongue enough to speak properly. It was like I had a mouth full of marbles! This all happened at peak concentration and lasted about an hour. Now I’m not sure what to do. If I should just give up on this, or keep going slower. Ie. Take only 15mg but maybe try two hours apart so that the peak concentration is less in my blood.
 
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Oh dear! That sounds awful! At least the Mestinon leaves your system quickly so those side effects don't last too long.

I think you should definitely speak to the doctor who prescribed the Mestinon, tell them that you tolerated it well at 15 mg (hooray for that!), and describe the side effects you had after increasing the dosage. They will be able to give you better guidance than I can!
 

Silencio

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Yes.. It was awful! But yeah it didn’t last too long. Tbh the neurologist who prescribed it knew nothing about ME, she just said that mestinon couldn’t cause any damage to try. So I prob will experiment one more time w the doses, and stop if it doesn’t work. I just wanted to post here for other patients to know to expect, in case this happens to anyone else. It’s crazy to me how drugs effect people so differently! Some people can take 60mg doses of this at a time.
 

Mel9

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Hi @RebeccaRe and @Mel9, I kept going with trying it. I seemed to tolerate 15mg after a few days. Yesterday I tried a 30mg dose after breakfast, seemed ok. Today I took 30mg again, 2 hours before breakfast. This time, all hell broke loose. My muscles all over my body started popping and twitching. Around my eyes were jumping so my vision got ten times more weird than it usually is. I couldn’t control my tongue enough to speak properly. It was like I had a mouth full of marbles! This all happened at peak concentration and lasted about an hour. Now I’m not sure what to do. If I should just give up on this, or keep going slower. Ie. Take only 15mg but maybe try two hours apart so that the peak concentration is less in my blood.


That happened to me when I overdosed on Mestinon (took 30 mg six times a day (total of 360 mg per day instead of 180 mg per day)

My symptoms slowly went away when I went back to the normal dose. The eye twitching was wild.

You need to go back to the lower dose.

If your doctor wants you to take 30mg you may need to increase your dose more gradually?

Or, I wonder, do you only really need the lower dose?
 

Silencio

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Or, I wonder, do you only really need the lower dose?
So, nearly a week after my last post.. I went back down to 15mg, and I’m taking 4 doses a day, earlier in day every two hours (9am, 11am, 1pm, 3pm, sometimes I am an hour late) It actually seems to be helping me. I haven’t had headaches now in over a week I think. I have felt a bit better the past two days. I going to keep taking it and see how I go.
 
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Has anyone experiences sleepines with mestinon ? At least at the begging of taking it?
I actually felt a lot more tired and out of breath on Mestinon. If you've just started it might be worth continuing the medicine for a little while longer to see if that symptom gets better. But you're not the only one who has experienced it.
 
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Hi there.
I was wondering at what hour do you take Mestinon @Mel9 @RebeccaRe ?
It is 5 hours apart? Or maybe 6 hours apart?
Did you observed any effects of you take it with short periods of time between, for ex 4 hours apart?

Thank you :)
 

Sushi

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I actually felt a lot more tired and out of breath on Mestinon. If you've just started it might be worth continuing the medicine for a little while longer to see if that symptom gets better. But you're not the only one who has experienced it.
I have not tried it though I hope to, but my layman’s understanding is that if you are parasympathetic dominant (high vagal tone) rather than sympathetic dominant, it might not work for you and might make you more tired. I am parasympathetic dominant and that why I haven’t pushed for it, but I would still like to try it and see.
 

junkcrap50

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I am parasympathetic dominant and that why I haven’t pushed for it, but I would still like to try it and see.
How are you parasympathetic dominant? Isn't that rare with CFS? I thought most CFS patients are the opposite, sympathetic dominant.
 

Sushi

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Tried to google this... how do you determine if you are one or the other?
It would be hard to know for sure without testing. I was lucky to be the patient of an autonomic specialist and he did extensive testing. You might be able to get some idea though by looking up the qualities/symptoms that go with the sympathetic and the parasympathetic systems. Your response to medications that work on these two systems might also give clues.
How are you parasympathetic dominant? Isn't that rare with CFS? I thought most CFS patients are the opposite, sympathetic dominant.
The majority of ME/CFS patients seem to be sympathetic dominant but my autonomic specialist also found that a significant subgroup were parasympathetic dominant. For instance, the medication that helped me most was strattera which increases norepinephrine in the synapses.
 

mattytoo

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It is 5 hours apart? Or maybe 6 hours apart?
Did you observed any effects of you take it with short periods of time between, for ex 4 hours apart?
I'm taking 60mg every 4 hours (though often I'll be an hour or two late) & at this dose I will get mild overdose symptoms (weakness, twitching) if I take it closer than 4 hours. At 45mg I can take it every 3-3.5 hours, but I prefer the stronger effect of the 60mg.
 

rel8ted

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It would be hard to know for sure without testing. I was lucky to be the patient of an autonomic specialist and he did extensive testing.
@Sushi, I would be interested to know how your visit went (what tests were done, what to expect). I am seeing an autonomic specialist in October at the insistence of my neuro (she thinks I have something more complicated than POTS). I am not sure what to expect at my visit. All I know is it will be hours long. If you would be willing to start a thread on it, that would be great!
 

Sushi

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@Sushi, I would be interested to know how your visit went (what tests were done, what to expect). I am seeing an autonomic specialist in October at the insistence of my neuro (she thinks I have something more complicated than POTS). I am not sure what to expect at my visit. All I know is it will be hours long. If you would be willing to start a thread on it, that would be great!
I don’t have the energy to start a thread on it right now, but I can PM you. It wasn’t one visit with this doctor—I saw him every few weeks for a few years.