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Questions about Mestinon, Midodrine, and Florinef

Discussion in 'General Treatment' started by RebeccaRe, May 11, 2018.

  1. RebeccaRe

    RebeccaRe Moose Enthusiast

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    A few months ago I started taking Mestinon and almost immediately I started feeling worse. I was chilled, constipated, and completely out of breath all the time. I stopped taking it a few weeks ago, and things are so much better--I had never realized what a luxury it is to be able to breathe deeply, or to hold a conversation without stopping halfway through a sentence to catch my breath. Has anybody else had these problems?

    After stopping the Mestinon my doctor recommended Midodrine. I'm uneasy about trying it because it raises blood pressure, and my resting blood pressure is in the normal range. Plus I spend much of the day lying down (usually propped up on pillows, but still), and information I've seen about the drug says that people shouldn't take it before lying down. On top of that, I have a strong family history of stroke (mother and grandmother). I'm very torn because I don't want to say no to trying something that could possibly help me, but I'm feeling like maybe the risks outweigh the benefits here. Have any of you had experiences with Midodrine? Does anybody have wisdom they could share?

    When I told my doctor about my concerns regarding Midodrine, he said that Florinef was also an option. Does anybody have experience with this drug?

    I just don't know what to do.
     
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  2. lnester7

    lnester7 Seven

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    Best thing ever happen to me in my live. BUT you have to start low and slow. It took me 2 years to be a full dose (10mg 3 times a day), and do not go overdo because it will trick you into thinking you are cured.
    I had the same struggles since my BP goes high when I crash, low at resting, If you do too much dose you will know. So I started with 2.5 mg (3 times a day) I was afraid to lay. But reclining is ok, I was afraid about the lay down thing, and I realized particularly me Am ok with it. Others end up in ER., so Just reclined to begin on very LOW dose is ok and trust me you need to lay because of the vasodilation so that does get better, so no need to worry.
    I am not doctor this is based on my experience. Others are afraid of this drug (I think they started way too high dose).
    The live of midodrine is very short lived, 4h so if something goes wrong should be ok soon. BUT start as little as you can possibly split the pill.
     
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  3. Shoshana

    Shoshana Northern USA

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    I do not know the answers, and am not familiar first-hand with any of those meds, Rebecca, but I would definitely share your wariness, as your reasons for considering not trying the midodrine sound very reasonable to me.

    I would consider and research all other options, first, if I was in your situation, and not feel that you must follow what one doctor recommends. It truly is your body, your life and your decision, to weigh out.
    SO it surely is a good idea for you to rest in between, after the other poor med experience, while you gather more info, to help you to decide on your next step.

    I think many have taken Florinef. Perhaps either of those meds might be in THIS SITE's search engine, or possibly you could start a thread on Florinef, and perhaps start it in the section for Members only, either emotional support or CFS/ME discussion, for possibly more people to see it?

    Inester definitely shared good information about it, so perhaps this IS the best place for the topic, I do not know.

    Just ideas. I send my caring to you.
     
  4. lnester7

    lnester7 Seven

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    I forgot to add, florinef was great, took first dose and went from bed to a 2mile walk ( do not recommend) and gave me a lot of relieve but I stopped because it was bloating me so bad. I have a fat face by nature, and florinef made it soooo much worst. So maybe I will restart w half pill. The issue w OI meds is , OI flictuated for us, so you have to adjust as you go.

    But OI meds have me out of being bed ridden. But takes time to find the right combo, right dose combo and you have to adjust as you go. There are natural alternatives to midodrine ( google) and you can try that and see how it goes.
     
    Shoshana likes this.

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