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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

    4 vote(s)
    13.8%
  2. Yes but it dit not help.

    1 vote(s)
    3.4%
  3. Yes, but I had to stop because of side effects

    4 vote(s)
    13.8%
  4. No I have not tried it

    20 vote(s)
    69.0%
  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
    Eve18, jpcv, Spindrome and 6 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
  4. EMilo

    EMilo Elizabethmilo.com

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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.
     
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  6. Eve18

    Eve18

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    Are you taking any other medications for POTS like beta blockers or fludrocortisone?
     
  7. mattie

    mattie

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    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

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    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...
     
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  9. Marylib

    Marylib Senior Member

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    New Zealand
    I have only been on mestinon for a week, but am very happy with it. My mind is more clear, less fatigue in general, my dry eyes are much better, and no constipation. Only side effect for me is frequent urination, but POTS is doing well with IV saline and ivabradine. Am on 30mg. three times a day. I feel very fortunate and hope this lasts!

    I am not increasing activity or "exercise" at all - I have learned my lesson about this many times over.
     
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  10. RYO

    RYO Senior Member

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    USA
    I am starting trial of mestinon 30 mg next week. I am hoping it helps...
     
  11. Dechi

    Dechi Senior Member

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    I asked my doctor if he would prescribe it but he said it was a very serious drug to take and wouldn’t do it.

    As I am declining though I might try again eventually.
     
  12. RYO

    RYO Senior Member

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    I titrated to pyridostigmine 30 mg three times daily over a week. It definitely seems to be helping but I will until 4 weeks to fully assess its effects. So far, I've experienced some GI side effects but not severe enough to stop medication.
     

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