Mestinon Questions

[dsdmom]

For those of you who have tried Mestinon - did you have a hard time getting used to it? I have been going VERY slowly - the first week I have only taken 30mg once a day because I have a tendency to be sensitive to drugs. Today I went up and added in another 15mg. I am now feeling very strange and am a bit frightened. I just feel very out of it - very lethargic but not tired (if that makes any sense). I just feel very heavy.

Has anybody else experienced something like this?

[goldicedance]

It took me a while to adjust to Mestinon. I think you need to give it more time.

Lois

[dizzygirl]

yup.. the very first time i tried mestinon.. i knocked me down in me down in bed for the first few days.. i have severe fatigue.. and my muscles felt like blobs.. and where very weak feeling.. uhm i had a hard time adjusting to the medication... but once i kind got use to it the fatigue and wacky muscle feelings went away.. and i'd get burst of energy...so maybe give it some time like goldie aslo suggested...

i hope that the werid feeling go away and that you are able to tolerate the medication.. for some ppl it truly is the wonder drug

good luck

[dsdmom]

Thanks for the replies. I'm glad this isn't unheard of. I'm feeling better too - I know that the drug is pretty short acting so at least I know I don't have to stick it out that long. I even felt like my breathing was weird. So annoying that I added in 1/4 of a pill and had that reaction!

Goldicedance, what sort of reaction did you have when you started? And how did you (and dizzy!) work your dosing? Did you start out low and go up or just start at the regular level?

How long do you think it took to get used to it?

[corina]

hi,

i think i started very low at 10mg 3 times a day (do not remember exactly, sorry!). i felt very sick in the beginning and if not for my family doc, i'm sure i would have stopped. but i'm glad that i didn't. although it is no wonder med for me, it does help a lot with temperature regulation (that also is my warning to take the next doses: when i start feeling terribly cold again ). building up very slowly (and using a med to protect my stomach as that was a big issue as well), i came to a dose of 120mg 3 times a day. i remember i asked my neuro hwo far i could go (didn't want to poison myself of course ) and although i can't remember exactly what he answered, i'm still far beneath the absolute max.

hope this helps a bit,

good luck and take care,

corina

[dsdmom]

So I took only 15mg this morning (actually at noon) and felt ok. But it's 4:30 and I'm starting to feel weird...I'm wondering if it's because I need another dose? How far about do you take your pills? Or what tells you that you need more? Has anybody's breathing ever felt a little strange?

[corina]

i have two warning signals in case i forget (like in weekends or vacations, when my rhythm is different): i start feeling terribly cold (not just cold but very very very cold. i once told my doc that i think this is how you would feel when you're dead , although i know that you can't feel when you're dead of course) and i get a headache. i think my breathing stays normal.

hope this helps,

corina