Mestinon - A Poll!

[scarfgirl]

I'm gathering this information for my Dr. She's reluctant to have me try anything else b/c I'm more or less "stable". But I don't wanna be stable, I wanna be better!

I've been doing a lot of research lately and mestinon looks like a good next step....and if the results of this poll are pretty far into the positive I'm definitely gonna push for it.

Also, I just wanted to make a poll.

Cheers,

Stacy

[roxie]

Stacy, It wouldn't hurt to give Mestinon a try.

I started taking it two years ago and had the best improvement I had since I got sick in 1997.

However last March I seemed to have some sort of reaction to it where my blood pressure went high and all my joints were stiff, so I had to reduce the dose and haven't been able to build up my strength.

Lately, I have been having trouble with my allergies, but once I get over them out plan is to try the mestinon again and stagger it, like take a higher dose every other day and see if I can tolerate it again! I am praying that I will b.c the meds combo of florinef, prozac, and mestinon have done more for then anything else.

I guess sometimes your body can just get overwhelmed by meds and need a break, so Im hoping thats all it was.

but by all means, Mestinon is worth a try!!

Madeline

[dizzy]

Mestinon did not make a difference for my POTS symptoms. However, it did give me bad diarrhea which I did not need.

It is worth a try because we all react differently to these meds. What works for one....may not work for someone else. It is all trial and error....and you won't know until you try.

[Ernie]

Gave me severe diarrhea within 2 days. Had to stop it.

[ode_to_fantasy]

I know this seems a bit drastic to say, but I've been calling Mestinon my "miracle drug". I've tried probably 30-40 random medications to see if MAYBE they would help with my NCS/POTS and I'm allergic to most of them. Then finally, my neuro put me on Mestinon. I haven't blacked out in over a month, whereas before, I literally passed out like every 10-20 minutes! I can walk again, climb stairs, go places without assistance. I know it's different for everyone, but from my own experience, I'd definitely say to give it a try. It did screw with my stomach REALLY bad when I first started taking it. (really bad diarrhea) But after 2 weeks or so, my body adjusted, and I've never been more thankful for any medication, EVER.

Best of luck!!

[roxie]

ode to fantasy, you are so lucky to have mestinon help so much!! good for you, congratualtions.

[Sunfish]

mestinon didn't help my orthostatic/ BP issues much but did do wonders for me GI wise. the problems many have with it were a great thing for me when i first started it as the "got things moving" so to speak & allowed me to eat a bit closer to normally for about ten months longer before having to resort to IV nutrition. without the combo of zelnorm & mestinon i likely would have had to start tube feeding or at the very least continue my liquid only diet of boost/ ensure/ milkshakes.

it's a pretty short-acting med though so for that reason is easier to try than some other meds (florinef, SSRIs, etc). thus if it doesn't work for you any unwanted side effects will be very short lived. i did have trouble with the extended release version when i tried to switch to once-a-day dosing but that was entirely due to my GI motility issues.

good luck!

melissa

[Maxine]

My next appointment is in Sept. with my ANS Doc. I have slow bowel motility------------I've had this for years. It's not terrible, but miserable at times. I'm also having some very rough ANS symptoms.

I would like to see if mestinon might help. However, I'm not sure if my symptoms may be related as a SECONDARY problem related to my EDS/upper cervical spine/cranial instability issues. If this was true, maybe mestinon might be a waste of time for me.

It would be fantastic if it would help with my fatigue and weakness, which has been quite crippling lately.

It can't hurt to try. Thanks for posting this-------------it gives me something to think about----

Maxine :0)