How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
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  1. charlie1

    charlie1 Senior Member

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    I've been prescribed 180 mg Mestinon SR once/day. I will begin it when I am feeling better (flu-like symptoms presently).
    Does anyone have any experience with this drug?
     
  2. charlie1

    charlie1 Senior Member

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    Oh, I forgot to say the mestinon is for my recent diagnosis of POTS. I would like to try a beta blocker to help with the migraines and POTS symptoms but not sure if that would be safe with bp occasionally still getting down to 100/50 ish, despite being on florinef for 4 months. ( was in 80's/40's) Also was diagnosed to be bradycardic 2/3 of the time while wearing 48 hr. holter. This should almost be another thread now on beta blockers .... sorry.

    Can anyone tell me about their experience with mestinon. Anyone try a beta blocker while being hypotensive and bradycardic.??
     
  3. dsdmom

    dsdmom Senior Member

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    I used it for a couple of years. Although I could not tolerate the pills and my neurologist finally prescribed the pediatric version which is a liquid so I started really really low and only built up to about 25mg 3/day. I liked it though - it always made me just feel better. I believe I've read it works along some anti-inflammatory pathway as well.

    I do think that a side effect of mestinon can be bradycardia though but you may want to double check that.
    I stopped taking it once the ivig I was doing kicked in. I wouldn't hesitate to go back to it though.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have read that it can increase growth hormone levels??
     
  5. ahimsa

    ahimsa Sick since 1990

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    Hi charlie1,

    You might want to try reading some of the threads at dinet.org (if you haven't already). Here's one forum that I found when using google to look up the Mestinon (I think the generic name is Pyridostigmine)

    http://forums.dinet.org/index.php?/forum/1-dysautonomia-discussion/

    I don't know whether any patients on that forum have POTS along with ME/CFS symptoms such as PEM, vs. just having POTS, but I wanted to pass on the link in case it's helpful.
     
  6. charlie1

    charlie1 Senior Member

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    dsdmom, I checked -you were right about the bradycardia! I'm a little nervous to take it now seeing as I also have hypotension (as well as issues with my vagus nerve - vaso vagal syncope)

    Use with caution in

    • Asthma.
    • People who have recently had a heart attack
    • People with a slow heart rate (bradycardia).
    • Low blood pressure (hypotension).
    • A condition called vagotonia (where overactivity of the vagus nerve causes symptoms such as slow heart rate, low blood pressure, constipation, sweating and painful muscle spasms).
    • Decreased kidney function.
    • Epilepsy.
    • Parkinson's disease.
    heapsreal - that's a good thing, right?
     
    heapsreal likes this.
  7. charlie1

    charlie1 Senior Member

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    ahimsa. Your suggested made me have another look at dinet. ahhh. I didn't scroll far enough but I now see a thread regarding my beta blocker with bradycardia question and also something on mestinon. Thanks! :)
     
  8. ahimsa

    ahimsa Sick since 1990

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    I'm glad the forum link was helpful. Treatment for all the different types of OI (NMH or POTS) can be complicated since it depends on the cause of the problem, how the patient reacts, and so on. What works great for one patient is a nightmare for another patient. But even though each patient is different I still think that the more information we can get, the better.

    Good luck with your drug trial!
     
  9. ramakentesh

    ramakentesh Senior Member

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    I found mestinon quite helpful - I have POTS - increased blood pressure on standing which goes DOWN on mestinon LOL
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Bumping this thread.
     
  11. SickOfSickness

    SickOfSickness Senior Member

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    It was a mixed bag for me. Good but with side effects. I have OI but it is not POTS.
     
    heapsreal likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    what type of side effects?
     
  13. SickOfSickness

    SickOfSickness Senior Member

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    I get cognitive problems. Most people get diarrhea, so I was glad not to get that, but the cognitive meant I couldn't take it in many situations. I couldn't get things done if they involved mental functions, but I could do more physically. I usually have the opposite. (Meaning without the drug.) The blurred vision is also annoying but I could put up with that.

    If you don't have the time-release type, it wears off fast. It varies for individuals. I found about 2 hours after it takes effect, it's losing effect.
     
    heapsreal likes this.
  14. jimmy86

    jimmy86

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    Did anyone else try Mestinon?

    I have found a case study:
     
    Jenny TipsforME and Theodore like this.
  15. deleder2k

    deleder2k Senior Member

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    Has anyone else tried this?
     
  16. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Why would Mestinon work in POTS &/ ME? is it to do with us also having autoantibodies to acetylcholine receptors similar to myasthenia gravis? For anyone it helped, did it also improve strength of voluntary muscles?
     
  17. jimmy86

    jimmy86

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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Interesting as an anecdote, yes. But I think it is sending an inaccurate message that mestinon is an overlooked drug that would help a significant proportion of dysautonomia patients. My autonomic specialist found that it helped less than 10%. You would have to fit a very specific profile to have a chance of benefiting from this drug.
     
    halcyon likes this.
  19. jimmy86

    jimmy86

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    did anyone else try Mestinon?
     
  20. jimmy86

    jimmy86

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    Does anyone else get nightmares from Mestinon?
     

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