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Nimodipine - use in ME

Discussion in 'General ME/CFS News' started by Sly Saint, Nov 24, 2017.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "
    Brief notes on Nimodipine and ME/CFS
    Nimodipine belongs to a group of drugs called calcium-channel blockers.


    In very simple terms these drugs relax the smooth muscle in the walls of blood vessels and cause them to dilate.

    So they are mainly used to lower blood pressure, treat angina, and improve the circulation in people who have Raynaud’s phenomenon (cold hands and feet).

    Nimodipine is slightly different to other drugs in the group in that its main site of action is on blood vessels in the brain (the cerebral arteries)."

    http://www.meassociation.org.uk/2008/01/brief-notes-on-nimodipine-and-mecfs/

    see also: http://www.25megroup.org/Information/Medical/Nimodipine Use in ME, Jan 2014.pdf

    eta: should be in treatments(?)
     
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  2. Cheshire

    Cheshire Senior Member (Voting Rights)

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    @Dechi has been using nimodipine IIRC.
     
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  3. Dechi

    Dechi Senior Member (Voting Rights)

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    Yes, I am still using Nimotop. I am unfortunately on a downward slope but Nimotop is helping me not go down as fast. I have been taking it for 18 months now.

    If anyone is interested in knowing more, just ask !
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    It was one drug that was being 'looked at' certainly back in the early 2000s ( I remember reading about it). However , in the UK it was hit or miss as to whether you could get it prescribed by your GP. More recently I have come across people that it helped 'stabilise' who have been on it for a while but can no longer get it on prescription.
    Again, another thing that does not seem to have been looked into re responders/non-responders(?)
     
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  5. Dechi

    Dechi Senior Member (Voting Rights)

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    It’s hard to get here as well. When my prescription runs out, I will have a hard time getting a new one !
     
  6. TiredSam

    TiredSam Moderator Staff Member

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    Just wondering how you know you would be going down faster without the Nimotop?
     
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  7. Dechi

    Dechi Senior Member (Voting Rights)

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    Good question ! I had lowered my dose to a strict minimum at the beginning of summer. I didn’t realize it at first, but 2-3 months later I was a mess and all my symptoms had increased in a somewhat drastic way.

    I upped my dose again about 3 weeks ago and went back to my previous condition.

    To be honest, the fact that I did the 2 day CPET test this summer certainly didn’t help, but I’ve been slowly but surely getting worse since I started being ill about 4 years ago.
     
    Last edited: Nov 25, 2017
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  8. Squeezy

    Squeezy Senior Member (Voting Rights)

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    This is very interesting, thank you @Sly Saint
    It would be horrendous of them to stop you having Nimodipine, if it's stabilising you, @Dechi. Is the problem the long-term use of it, that's not been researched?

    Hell, if the alternative is to decline, then isn't it in your best interest to continue? Why are doctors cautious when it's not needed, but stupidly reckless at times they should know better, (I have a list)?
     
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  9. Dechi

    Dechi Senior Member (Voting Rights)

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    The problem is that it’s an off the shelf prescription and everyone is scared to prescribe something used short-term on people who had a stroke to treat someone with ME long-term.

    I am hoping that since I have been using it for a long time, they are more scared to make me stop it, lol!
     
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