International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Mestinon Trial of 1

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

?

Have you tried Mestinon for POTS?

  1. Yes and it helps, I still take it

    2 vote(s)
    9.1%
  2. Yes but it dit not help.

    1 vote(s)
    4.5%
  3. Yes, but I had to stop because of side effects

    3 vote(s)
    13.6%
  4. No I have not tried it

    16 vote(s)
    72.7%
  1. mattie

    mattie

    Messages:
    76
    Likes:
    216
    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
    Eve18, jpcv, Spindrome and 6 others like this.
  2. mattie

    mattie

    Messages:
    76
    Likes:
    216
    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

    Messages:
    76
    Likes:
    216
    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:
    217
    Likes:
    188
    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

    Messages:
    76
    Likes:
    216
    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.
  6. Eve18

    Eve18

    Messages:
    54
    Likes:
    26
    Are you taking any other medications for POTS like beta blockers or fludrocortisone?
     
  7. mattie

    mattie

    Messages:
    76
    Likes:
    216
    I've tried clonidine and fludrocortisone. Could not tolerate either one.
    I have been on propranolol 2x10mg dd. It helps a little bit with standing tachycardia but not much.
    Mestinon for me is clearly more effective not only in lowering standing tachycardia but also with the things I've stated earlier.
     
    sb4 likes this.
  8. mattie

    mattie

    Messages:
    76
    Likes:
    216
    Update:
    Took me a while to recover from a serious flu.

    As for the Mestinon: I was not able to build up to more than 60mg a day.
    At 60mg a day I regularly experienced bradycardia. (<50 bpm).

    Tried different dosages below that 60mg and setlled for 2x10mg a day.

    It still helps with lowering standing tachycardia; for me it works better than propranolol.
    It also gives a bit more energy but in no way does it prevent or lessen PEM for me.

    So all in all no spectacular results,
    I will sitick with 20mg a day for now...
     
    Malea and sb4 like this.

See more popular forum discussions.

Share This Page