Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Mestinon Trial of 1

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by mattie, Jan 22, 2018.

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Have you tried Mestinon for POTS?

  1. Yes and it helps, I still take it

    1 vote(s)
    5.0%
  2. Yes but it dit not help.

    1 vote(s)
    5.0%
  3. Yes, but I had to stop because of side effects

    3 vote(s)
    15.0%
  4. No I have not tried it

    15 vote(s)
    75.0%
  1. mattie

    mattie

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    A bit late, but I promised to report about Mestinon Trial (@echobravo)
    My new GP takes M.E. seriously. :thumbsup:

    Not only that, he allows me to trial Mestinon without going through a specialist which would be the normal route for this kind of off-label medication use.

    It works well for a subgroup of POTS patients and also PWME have reported benefits.

    https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/

    Prescribed dosage varies a lot, from 10mg to 180 mg or even more.

    I will start low. So today: 5mg
    No noticeable effects so far.

    I will update this thread and report of benefits vs side effects as I keep increasing the dosage.
    I wanted to keep the poll options limited (simple). But let me know if you want me to add options.
     
    Last edited: Jan 22, 2018
    jpcv, Spindrome, echobravo and 5 others like this.
  2. mattie

    mattie

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    Day 2: 10 mg (2x5)
    No noticeable effects good or bad.
    No change in upright tachycardia.

    Day 4: now on 3x10mg
    tachycardia has decreased a bit.
    No side effects.

    Will switch to weekly update or in case of significant effects.
     
    Last edited: Jan 27, 2018
    pattismith and sb4 like this.
  3. mattie

    mattie

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    Now on 3x20mg daily.
    POTS definitely improved, standing tachycardia reduced with 20-30bpm (!)
    Also more energy during the day.
    Body / Brain feels calmer. Parasympathetic nervous system kicking in I guess.
    Side effects: none so far.
     
    Last edited: Jan 30, 2018
    Jesse2233, pattismith, voner and 2 others like this.
  4. EMilo

    EMilo Elizabethmilo.com

    Messages:
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    Seattle, WA
    I just started at about 7mg. It feels like I was hit by an acid freight train. Not a fun one. It's scary.
     
    mattie likes this.
  5. mattie

    mattie

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    wow thats not a nice start.
    With so strong a reaction to such a small dose I would consult my prescriber.
    This med clearly will not work for everybody and PWME can be very sensitive to medication. I know I am.

    Due to heavy flu I am not upping my dose for now. Impossible to measure effects right now.
     
    pattismith likes this.

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