An Update on the Mestinon Clinical Trial

PNR2008

Senior Member
Messages
613
Location
OH USA
I have POTS and at 3X a day it made my eyes and muscles around the eyes quiver and twitch then turned into a migraine headache. I couldn't read, watch TV or use the computer, not worth it and it did not make me feel better at all even at lower dosages.
 

ChookityPop

Senior Member
Messages
605
How did you manage? Did you buy it online?
It was actually really easy to get it from my dr. I dont think its a controversial drug.

I wrote down these, but I didnt need to tell him much.

Mestinon may benefit ME patients due to:
* Increasing oxygen and blood flow to the muscles’ mitochondria.
* Increasing growth hormone levels.
* Improving parasympathetic nervous system and vagus nerve functioning.
* Increasing acetylcholine and thus promoting REM sleep, improving muscle movements and enhancing cognitive faculties.
* Raising exercise tolerance.

https://livingwithchronicfatiguesyn...ag0RwFPb0oLnGNga3qna2Zp96AQF9oOc9yol5rkdsn6ME

https://www.omf.ngo/2020/09/21/an-update-on-the-mestinon-clinical-trial/

they also use if for a stomach condition.
 

ChookityPop

Senior Member
Messages
605
I have POTS and at 3X a day it made my eyes and muscles around the eyes quiver and twitch then turned into a migraine headache. I couldn't read, watch TV or use the computer, not worth it and it did not make me feel better at all even at lower dosages.
Im sorry to hear that, what doses did u do? I started on 10mg x2 a day. tried going up to 20mg x3 and it gave me insane muscle cramps. will try 10mg for a while
 

Rebeccare

Moose Enthusiast
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9,071
Location
Massachusetts
tried going up to 20mg x3 and it gave me insane muscle cramps. will try 10mg for a while
I can't remember exactly how long I was on it before my doctor let me increase the dose, but it was at least six weeks (and it might have been as much as 3 months). It sounds like taking it at a low dose for a while helps your body adjust to it a bit better.
 

Rebeccare

Moose Enthusiast
Messages
9,071
Location
Massachusetts
The dose is 180mg/day, correct?
Although that is the standard dose that many people end up taking, generally doctors don't suggest that you start at that dose. This drug can have unpleasant side effects (nausea, muscle aches, etc.), so people usually start at a lower, pre-therapeutic (meaning that you're not actually taking enough to make a difference), dose and then very slowly increase over the course of weeks or months so their bodies can adjust.

I took Mestinon for a while under the supervision of Dr. Systrom, and you can read about the dosing instructions I had here, along with another member's suggestions for starting at an even lower dose and increasing even more slowly: https://forums.phoenixrising.me/threads/mestinon.75824/post-2196128
 
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