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.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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An Update on the Mestinon Clinical Trial
- Thread starter Ben H
- Start date
ChookityPop
Senior Member
- Messages
- 584
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
- 584
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
- Messages
- 9,066
- Location
- Massachusetts
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.
- Messages
- 27
Thank you. Too bad, here, 3rd doctor said no to Mestinon. They're all afraid of losing their licenses...
- Messages
- 27
I ordered it, and received it yesterday. Just started the test. The dose is 180mg/day, correct?
Rebeccare
Moose Enthusiast
- Messages
- 9,066
- Location
- Massachusetts
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
- Messages
- 27
Thank you