Mestinon Trial of 1

Have you tried Mestinon for POTS?

  • Yes and it helps, I still take it

    Votes: 7 14.9%
  • Yes but it dit not help.

    Votes: 6 12.8%
  • Yes, but I had to stop because of side effects

    Votes: 5 10.6%
  • No I have not tried it

    Votes: 29 61.7%

  • Total voters
    47

Learner1

Administrator
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Mestinon is not a cure for ME/CFS. Many of us are prescribed it for postural orthostatic tachycardia syndrome or orthostatic intolerance which are common in ME/CFS patients. I am being prescribed it by a dysautonomia specialist, a neurologist, who tested me for dysautonomia. My ME/CFS specialist sent my blood to Germany for these tests which showed I had antibodies causing my symptoms and also has prescribed IVIG to help attack the autoimmune part of it.

https://www.celltrend.de/pots-cfs-me-crps.html

The attached case study describes how IVIG was used to help one patient.
 

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Mel9

Senior Member
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@*GG* Are you still on 120mg of Mestinon? Did it help? And Mel9, what dose are you on and is it helping? Have either of you noticed changes in heart rate?

On a beta bl8cker plus Mestinon, my BP is better, I can stand in a grocery line without fainting now, but my heart rate is too fast. Been in multiple drugs and nothing has worked yet, but I'm only on 60mg Mestinon. Wondering if increasing it would help...

I am now on 30mg (half a tablet) three times daily. I am fine for three hours and can go shopping or do light work during this time. A few times I have overdone the physical activity, resulting in a ‘light’ version of PEM next day.


I start to get tired again by four hours after my last half tablet and need to be careful to take my next one quickly.

Often I don’t realise and leave it for five or more hours by which time my battery is well and truly flat.

I plan to try setting a four hour alarm.

My doctor suggested I gradually increase to three lots of 60g per day but I will take it very slowly to avoid the side effects.

My resting heart rate is down from 81 to 78 bpm. That is not a lotdifferent.

But: I can shower now with a reasonable heart rate (it used to go up to 150 bpm).

My POTS is almost under control for 4 hours after taking a tablet but I am careful not to ‘push’ it.
 
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Mel9

Senior Member
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Location
NSW Australia
Since then, I increased to four half tablets daily which caused me to feel so well I overdid the walking, resulting in severe PEM

This is going to take a lot of patience