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Taking midodrine, feeling awful - what should I do?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by E-Beth, Apr 6, 2013.

  1. E-Beth

    E-Beth

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    I've been taking midodrine since late Jan (1, 2 or 3 5mg tablets per day), but am unsure whether to continue.

    It has made my hair go really thin, but even more significantly, I permanently feel super lethargic (in a way different to CFS-'normal'), particularly mentally really slow which means I basically cannot read at all. This occurs both on days I take it and days I don't.

    This is unusual as before I started taking it, I couldn't read on 'bad' days but on 'good days' I might be able to read for a while. So I'm not sure if midodrine is the problem or something else!

    The other problem is that my body seems to have gotten used to having a higher blood pressure now so that on days when I don't take midodrine and use compression tights & an abdominal binder instead, the are no longer as effective as the used to be i.e. last year if I put on both pairs of tights + the binder, after about half an hour my BP would start to get too high and I'd take the binder off.

    Now I have all 3 on and never feel like BP is getting too high.

    Any advice? I would love your thoughts. Going crazy with feeling so yuck all of the time!



    p.s. the reason I have the occasional midodrine free day is because it makes me wake up really early in the morning, so every few days I need to sleep longer so I don't take it.
     
    Allyson likes this.
  2. SickOfSickness

    SickOfSickness Senior Member

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    Why was it prescribed? What benefits do you get from it? Are the benefits gone now? That is a lot of bad you described.
     
    Allyson and The Spitfire like this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    If I were you, I would tell your doctor and try and go off of it. It doesn't sound like it's helping you, it's causing what seems to be more side effects and perhaps there is another medicine. Is it possible to wean off of this med? I love the phrase, "there is more than one way to skin a cat"...sorry for cat lovers, but what I mean is...there has to be something better than this.
     
    Allyson likes this.
  4. E-Beth

    E-Beth

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    Thanks guys. Excellent questions.

    It was prescribed because I have moderate to severe POTS.

    Pros: I can stand up for more than 15 mins, I can do more in my day in terms of standing up, walking around and it reduces post-exercise muscle pain massively. These are all really big pros which I am still getting from it. If I stop taking it then I probably won't be able to continue with small amounts of exercise as I won't be able to deal with the muscle ache afterwards, nor will I be able to keep up my 4hr/wk job.

    According to the POTS specialist (Dr Chris O'Callaghan at the Austin Hospital in Melbourne, Australia), there only drug options are Florif (fluctocortizone) and midodrine. I've already tried florief and it was a disaster - I got so many recurring illnesses from a depressed immune system that I spent most of 6 mths in bed, which contributed to de-conditioning and decreased my activities tolerance.

    So basically apparently I don't have any options if I go off it completely...

    But I'm not even sure if it's the drug which is causing the problems, or something else, or it's some biological change that the drug has caused which will remain the same even if I go off it.
     
    ahimsa, Allyson and nanonug like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    ahimsa, Allyson and Valentijn like this.
  6. Marianarchy

    Marianarchy

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    My Autonomic Specialist prescribes midodrine in very low doses along with a beta blocker. He says the beta blocker counteracts the midodrine side effects. That said, I haven't been brave enough to try this treatment strategy after a disastrous trial of midodrine alone that was prescribed by my PCP.

    Like E-Beth, Florinef depressed my already dysfunctional immune system. My NK cell function fell from 26 before Florinef to 11 after.

    Happy to hear that Strattera worked for Sushi. I'll have to ask my doc about giving it a try.
     
    Allyson likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Marianarchy

    Your doctor may not be aware that strattera helps a percentage of patients with OI--most don't seem to be. I think it was presented in an international conference of autonomic specialists in about 2006 as a promising medication.

    The trick with strattera is very low dosing and starting by opening a capsule and only transferring a half to a third of the contents to an empty capsule--at least this is what my doctor found. It is hard to get used to for many patients with dysautonomia. I think I ended up with taking 10 mg twice a day but it took a month or 6 weeks to build up to that.

    Best,
    Sushi
     
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  8. nanonug

    nanonug Senior Member

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    Quick question: do you have polyuria?
     
    Allyson likes this.
  9. Allyson

    Allyson *****

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    E-Beth, thanks for thei interesting post; I was not able to take midridine as my BP resting was a tadtoo high
    flurinef was awul for me though

    I thought this was VERY interesting when you said - and it reduces post-exercise muscle pain massively.
    that indicates a link between POTS/EDS and PEM !

    Proessor f O'Callaghan prescribed licorice root caps for me when i could not take midrodine - not sure if it helps or not;

    about Nanonug's question on polyurua - i have i and polydipsia BUT both disappear when i take IM vitamin B 12 weely - which boosts blood volume . It does not help my energy but it improves my sleep dramatically.

    have you treid coconut water? in large amounts
    and keeping abdo cool with chillows? - to vasoconstrict abdominal blood vessels?

    An Prof said not ot elevate feet above head height when lying down nor wear compression garments when lyung down - sends false BP high messages so you drop your BP further.

    Have you seen genetics clinic at Royal Melbourne Hospital? I am going tomorrow.

    cheers,
    Ally
     
  10. ahimsa

    ahimsa Senior Member

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    Yes, I had also read that one should take off compression stockings (or even pantyhose, if you wear them) if you're going to be putting your feet up or lying down. But I didn't know the reasoning behind it. Thanks for sharing that.
     
    Allyson likes this.
  11. Allyson

    Allyson *****

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    The lovely geneticist i saw yesterday suggested I take

    chondriatin sulphate and glucosamino glycans
    supps - to strenthen connective tissue

    think i have the spelling right

    he isaid try them for a month or so - if they dont work by then save your money.

    Also IM B 12 and vit c as they are the basics for buildig connective tissue
     
    merylg likes this.
  12. ukxmrv

    ukxmrv Senior Member

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    I tried both those supplements for around 5 years (had a bad accident with injuries to bones, muscles etc) but there were no positive reactions for me. Also IM B12 and C. The C does help in high doses if I am coming down with a cold.

    Hope that I don't have EDS.
     
    Allyson likes this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I reacted very badly to both of those each time I tried them--each time hoping that this time they would work!

    So, I am saving my money.

    I do take hydrox B12 (subcut as this gives a slow release) and fairly high vit C, but have not noticed any effect on connective tissue--but who knows--maybe it is helping!

    Sushi
     
    Allyson likes this.
  14. Allyson

    Allyson *****

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    Oh well that is some consolation for me thanks Sushi - maybe the midrodine woud not suit me anyway!

    I DO find IM B 12 to help in that it improves my sleep - beyond a doubt - I never knew why and thought it was because it boosts blood volume - it may be due to that AND the fact that it helps other connective tissue formation as well...time will tell I hope. I tried it sub-cut once but prefer it IM and every 5- 7 days seems to work well for me.

    I take ACES now but I took Ester C for a good while - l will keep them up - also I felt a bit better I thought on L-glutamine and if that helps repair the intestinal vili that might aid absorption of vitamins. I do get more coldsand bronnchitis etc if i stop the vitamin C

    It is so hard to tell what helps as half day upright will make me crash no matter what - then you cannot judge if anything is good or not.

    At least we have the internet now to talk about it - my mother wasa never even diagnosed with anything though she had the same symptoms I am sure.

    cheers
     

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