Mestinon?

[rel8ted]

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.

That would be great. I have no idea what to expect & it’s like going on va action to get there, so anything I can learn in advance would be wonderful.

 

[pattismith]

I would like to know if anyone has tried Mestinon before?

Did it help symptoms?

Any side effects?

I see Dr. Systrom is a big believer in it and claims good success with his CFS patients.

I tried a small dose and got diplopia….bad trip...

 

[Pearshaped]

I tried 10mg once and it made me much much worse.lasted two days.
when I felt better i tried it again.
And same thing happened again.

I guess you'll notice it rather quickly if its in anyway useful (or not)for you.

(I felt worse within 35minutes after taking it.)

I felt even more ill than before after taking it.was not funny at all.

But since it helps for some PwME its probably worth a try..

 

[Sushi]

I am up to about 22 mg of Mestinon twice a day. I’d like to get to 30 mg but increasing the dose is hard for me—gut issues and headaches though once I get to the new dose it has had a good effect in preventing chronic headaches. I think it is also reducing PEM though the effects are somewhat subtle for me.

 

[tiredgirl928]

I started mestinon at 15 mg once per day, then twice, and now 3 times per day. At first, I felt more fatigue and SO MUCH SWEATING mostly on my face and hands. I've been taking it for 2 weeks-ish and no longer feel tiredness from taking it, but I can say it is slightly helping with the muscle weakness and PEM!! I am still sweating so much on it... But, I am hopeful that once I increase to the 30 mg dosage things will improve even more so in terms of muscle weakness

 

[MartinK]

Hi all, now Im on 120mg/day (4x30mg of Mestinon), no side effects, no gut problems..BP and hr still the same (normal). But still no improvement. Its a 1 month on Mestinon now.

Do you think it is worth continuing or even increasing the dose? I don't want to take unnecessary risks. I think some had improvements even at a smaller dose...

 

[tiredgirl928]

Hi all, now Im on 120mg/day (4x30mg of Mestinon), no side effects, no gut problems..BP and hr still the same (normal). But still no improvement. Its a 1 month on Mestinon now.

Do you think it is worth continuing or even increasing the dose? I don't want to take unnecessary risks. I think some had improvements even at a smaller dose...

I might try to take it for another month, and then make a decision then. It seems like you're already at the max dose. Mestinon is a weak agent, but I felt a difference almost immediately

 

[MartinK]

@tiredgirl928 interesting! About how dose you talking?

 

[tiredgirl928]

@tiredgirl928 interesting! About how dose you talking?

full dose- 30mg 4x/day . But it doesn't make a huge difference for me either