Our Newly Ill Face Their First Holiday Season with ME/CFS
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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  1. While going on one of my rambling research travels on the internet today, the post at the very, very bottom of this thread jumped out at me (avoid the posts above if you're having a down day; they'll just make you mad):

    Rapid responses to BMJ CFS/IBS comparative study

    I was struck by the mention of Nimodipine, which I hadn't heard of before.
    I dug up some more info, and here it is:

    CFS Action pack - nimodipine (the paragraph you need to read is about halfway down this page)

    Anybody else tried this? How did you get on?

    Rachel xx
  2. Jenny

    Jenny Senior Member

    Hi Rachel

    We talked about nimodipine briefly in another thread a while ago (can't remember where but you could try the search facility). I had a subarachnoid (brain) haemorrhage a few years ago. I can't help but think it was linked to inflammation of blood vessels, but I was also taking guaifenisen, which is a blood thinner. I was given nimodipine in hospital and took it for 6 weeks in total. After I'd recovered from the pain and nausea from the haem. I started feeling better than I had for years.

    A while ago I got one of the docs I see to prescribe it again but he only gave me a fraction of the dose I had in hospital, and it made no difference. It reduces blood pressure and as mine is so low anyway it could cause problems.

    I'll defiinitely try it again when I've finished my experiments with all the other things I'm trying. It's a calcium channel blocker and causes blood vessels to dilate so that circulation improves.

  3. Oooh, how exciting. Thanks Jenny.
    I'll add this to the list of prescription drugs I'd like to try once I get a good doctor and a firm diagnosis.

    Rachel xx
  4. faith.hope.love

    faith.hope.love Senior Member

    This drug is prescribed for people with ruptured aneurysms or hemorrhagic strokes. It is not FDA approved for any other use, but I think it may be used for extreme cases of migraine or bipolarism as a last resort. Most (if not all) insurances will not pay for this drug unless you've had some type of brain hemorrhage, and it costs around $1500 per month (depending on your dose). I used to work exclusively in neuroscience, and I think you will be hard pressed to find any physician who will prescribe this drug for any other reason. The risks and side effects alone just aren't worth it.

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