How we can hijack the media, in four easy lessons
Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?
Discuss the article on the Forums.

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

    Messages:
    9
    Likes:
    7
    Melbourne, Australia
    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

    Messages:
    2,035
    Likes:
    1,452
    US
    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

    Messages:
    2,213
    Likes:
    3,247
    Pennsylvania
    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

    Messages:
    9
    Likes:
    7
    Melbourne, Australia
    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

    Messages:
    9,172
    Likes:
    10,345
    Albuquerque
    ahimsa, Allyson and Valentijn like this.
  6. Marianarchy

    Marianarchy

    Messages:
    40
    Likes:
    27
    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

    Messages:
    9,172
    Likes:
    10,345
    Albuquerque
    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
     
    ahimsa, Allyson, allyb and 2 others like this.
  8. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    392
    Virginia, USA
    Quick question: do you have polyuria?
     
    Allyson likes this.
  9. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    673
    Australia, Melbourne
    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

    Messages:
    1,318
    Likes:
    1,832
    Oregon, USA
    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 *****

    Messages:
    1,684
    Likes:
    673
    Australia, Melbourne

    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

    Messages:
    3,749
    Likes:
    2,576
    London
    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

    Messages:
    9,172
    Likes:
    10,345
    Albuquerque
    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 *****

    Messages:
    1,684
    Likes:
    673
    Australia, Melbourne
    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
     
  15. EtherSpin

    EtherSpin

    Messages:
    87
    Likes:
    83
    Melbourne , Australia
    @E-Beth similar story,kinda. around 6 months on mido. highest dose is morning and an afternoon dose of 10mg each time (2 tablets, so 4 tablets total per day) and though my BP numbers look much better when they hook me up for testing prior to appointments I cant detect *any* energy boost, in fact, this winter is worse than the two previous. florinef (which im still on) helped me in the summer when paired with isotonic drinks served nice and icy cold .

    I feel chills all the time, goosebumps all over my limbs and scalp and rather than being over confident about what i can do like in the past Im feeling all the time a lack of motivation because my body is signalling - dont even bother stepping into the kitchen, you will not survive cooking that meal or organising those tablets.

    im scared to go off it now cause I put my hopes behind it. I hope our doc takes a broad look at current CFS research to incorporate into his working theory of the illness - he is clearly a brainy guy but I am disappointed at the implication that so much of this is pure BP mechanics cause with the tiny bits of graded exercise he started me on I consistently had viral infections following any increase (no matter how seemingly trivial) waking up after adding one minute to my recumbent bike with conjunctivitis laden eyes, the flu and swollen glands for example.

    Im hoping he suggests something else to try or has some theories about why it might not be working well for me.
     
    Hutan likes this.

See more popular forum discussions.

Share This Page