Mestinon??

[Dawnie]

Hi there all,

I was just wondering if anyone here has had any experience with treating their POTS with MESTINON? I'm on Fludro but I would to change to something that is a not a steriod. Any help would be appreciated. Thanks...

-Dawnie

[corina]

hi dawnie,

i'm on mestinon for several years now and although it's not my miracle med, i can't do without it! what helped me most was that i stay warm now. i was so very cold that i really felt as cold as death. i'm using a med to protect my stomach as i already had stomach problems. i hope that mestinon will work well for you!

take care,

corina

[Simmy]

Hi Dawnie,

My doctor added Mestinon about 3 months ago, to my Verapamil, Desmopressin and Midodrine. He started me at 30mg x2 and gradually upped it over a month to 60mg x3, but shortly thereafter I dropped it to 60mg x2 because of the worsening nausea. I still get an overall nauseous feeling from it, especially about an hour after taking it, along with an all-day dizziness that I did not have before starting it, but it does seem to help keep blood pressure up slightly when standing after taking it.

For me, however, the good effects only last for an hour or two and I think the benefit no longer outweighs the yuck. I'm considering stopping it altogether, but that's just me. Many have great success with it, some with little or no side-effects. Good luck.

[rach73]

Hi,

I have been on mestinon for nearly three years now. I was originally diagnosed with myasthenia gravis and the diagnosis was removed, hence why I take mestinon. I take between 60-90mg four times a day. If I don't take it I have really bad ptosis.

My BP really drops at night when Im not on it.

It was only when I had to come off mestinon in March this year for hospital tests that I actually uncovered my low blood pressure! I can certainly notice a difference when I am not on it. Basically feel like I am going to black out all the time.

It hasn't got rid of the low blood pressure completely but it does help. It can have pretty horrible side effects, which I still suffer with pretty much most days. I always have the immodium handy!

Im still freezing cold all the time, so I really wish it had the same effect as you Corina!

Rach

[KristinL]

I started taking Mestinon after I was diagnosed (2006) when I started to feel better in 2008 I stopped taking it per the doctor. Then I relaped in 2009 and started taking it again...now I think I will stay on it because I do feel better with it then without. I hope you find good results too! (I take 180mg timespan daily)