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Midodrine, Midon

Discussion in 'General Treatment' started by fisgn, Oct 12, 2011.

  1. fisgn

    fisgn

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    Hello

    Wondering if anyone had tried Midodrine, brand name Midon. It's normally for orthostatic intolerance, a specialist in my local hospital prescribed it for me. Says he uses it for other CFS patients. I haven't started taking it yet, just wondering what I might be letting myself in for.
  2. jstefl

    jstefl Senior Member

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    Brookfield, Wisconsin
    I was on Midodrine for several years.

    I started after my blood pressure dropped to 80/50. The Midodrine brought my BP back to near normal levels without any apparent side effects. It became much easier to stand up without getting too dizzy, and gave me an energy boost.

    I saw three different cardiologists, and none was able to give me a good reason as to why my BP had dropped so much. After a couple of years on Midodrine, I started Valcyte. While I was taking the Valcyte, I was able to reduce the Mododrine a little at a time, until I was completely off of it. I have now gone more than three years without the Midodrine, and am doing fine. My BP is a little on the low side, but is well within the normal guidelines for a healthy person. It is also very constant, where before Valcyte, it jumped around all over. It could have been very high or very low.

    The Midodrine was a good stopgap measure for me, but the Valcyte was a cure. Too bad cardiologists don't understand this.

    John
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Midrodrine can help, symptomatically, a lot. But it can also be tricky. I took it for 2 weeks and thought it was great then with the next dose (and I was taking a low dose) thought I was going to die for about 6 hours till it wore off. Others have had similar experiences and others have also had good experience with it.

    So, if you take it, just monitor carefully how you are feeling and if you should have some unpleasant symptoms that you think are related to midodrine, consider carefully whether to take the next dose.

    When midodrine works, it is not "healing," just helping with a symptom--which can be very welcome. But at some point we have to deal with causes.

    Best,
    Sushi
  4. SickOfSickness

    SickOfSickness Senior Member

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    Tried it, but didn't like the side effects. Also when taking it, you're not supposed to lie down. Not good for us who need to rest in bed often.
  5. ahimsa

    ahimsa Senior Member

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    Oregon, USA
    Midodrine has worked pretty well for me. I agree that it is just treating the symptoms but, in my case, that's all I can do. It would be great if I could find a doctor to identify and treat some hidden infection (if indeed I have one) but that has not been possible for me. So, until that day comes, I'll take treating the symptoms as the next best thing. :D

    The only side effect I've ever had from midodrine is the prickling feeling on the top of the head. (like goosebumps - something to do with how it affects the hair follicles) That has gone down quite a bit over the years but it still happens once in a while.

    As others have said, some people don't do well on this drug. Also, your doctor might recommend that you take your own blood pressure at home for a while just to make sure it doesn't make your BP go to high. Mine is in no danger of that but some people do have this problem.

    As far as lying down goes, when I need to rest I lie back in the recliner with my feet up. That way my head and torso are fully supported and resting but it's not lying down flat. My head is still higher than my feet. Then there are those days when I'm feeling much sicker (migraine, flu, or whatever). On those days I just skip the midodrine altogether. It's only helpful for me when I'm trying to be upright. It's definitely not needed (and possibly contraindicated - could make BP rise too high) if you're going to be lying flat most of the time.

    My cardiologist is the one who monitors my prescription because my primary care physician said she was not familiar enough with the drug to feel comfortable prescribing it. Are you seeing a cardiologist? Not that they necessarily will know much about orthostatic intolerance - I'm just curious.

    There are several threads that talk about midodrine in the sub-forum for orthostatic intolerance (http://forums.phoenixrising.me/foru...hen-Standing-Orthostatic-Intolerance-POTS-NMH... ) Or you could do a search for midodrine and see what comes up. And I'm sure folks over on the dinet forums have posted about this drug (see http://forums.dinet.org/ )

    Best of luck to you! Let us know if you tried it and whether it helped.

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