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Midodrine for Dysautonomia

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by kerrilyn, Jun 18, 2010.

  1. ramakentesh

    ramakentesh Senior Member

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    Ofcourse I am working with a doctor. I would struggle to prescribe myself midodrine :). You realise that there isnt a clear understanding of the etiology of POTS in any cases therefore the treatment options work sporadically, are rarely supported with little more a conjectural basis and are 'more guesswork than science'? (this statement coming from a leading researcher in orthostatic circulatory control.

    You realise that 'experts on treating OI' base most of their experience on clinical results rather than research? And that in pots two similar patient presentations can have paradoxical results from treatments?

    The aim of the exercise is to find a medicine or combination that works before for me which i am doing. :) My observations were purely about midodrine.

    POTS and NMH have very different mechanisms. In NMH there is a reduction in vasoconstrictive responses to standing, a reduction in sympathetic outflow or perhaps an excessive parasympathetic response to standing. In POTS there is either increased peripheral blood flow exaccerbated by postural challenge and redistributive thoratic hypovolumia, increased splanchnic (stomach/pelvis) blood pooling and again redistributive thoratic hypovolumia or there are low flow states characterised by increased peripheral resistance, reduced vasomotor or NO mediated flow dilation, sympathoexcitation and chronic reductions in absolute blood volume.

    If you have orthostatic hypotension and tachycardia you do not have POTS you have NMH or NCS. POTS is characterised by an increase in orthostatic heart rate without a measurable reduction in blood pressure. There is however redistributed changes, flow abnormalities, sympathetic excess and changes in cerebral autoregulation that occur mimicing the effects of postural hypotension.
     
  2. Sing

    Sing Senior Member

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    Thanks, ramakentesh. That is a very detailed explanation which makes a clear point about the differences between POTS and NMH. I didn't know all that!
     
  3. ahimsa

    ahimsa Senior Member

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    Hi ramakentesh,

    I hope my post didn't come across the wrong way. I knew you were working with some kind of doctor. I also take midodrine so I know that it requires a prescription. My question was "Are you working with a doctor who has expertise in treating OI" not "Are you working with a doctor." I was curious to know which specialty your doctor was in but my question must have been confusing or badly written.

    I'm working with a cardiologist. I think I'm the only patient he has that has any type of problem with orthostatic intolernace. He's the one who mentioned that a combination of drugs are often taken by patients who have orthostatic intolerance so that's why I mentioned it.

    I am so sorry if my post was not helpful. I apologize for any misunderstanding.
     
  4. ramakentesh

    ramakentesh Senior Member

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    Thats fine. I didnt take offense or anything just clarifying the background of my post. I am now on both mestonin and midodrine as requested by the doc and its interesting. Do any of you guys find that midodrine makes you feel worse for the first two hours? Seems to happen to me every time.
     
  5. sandgroper

    sandgroper

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    I got worse at perimenopause then worse again at menopause. Just recently went back to HRT a month ago after being off it for years. Sooo disabled that I was desperate. I had got my bp up by increasing fluids and drinking licorice tea. I get higher HR on standing with little change in bp...so i am a bit different to you.

    I was so brain drained I was not really equating my symptoms with meno......well I did 8 years ago but got too ill to get to a good hormone dr. Now I have done back onto DHEA and testosterone as well as estrogen/progesterone.

    If it works I will stay on it....I am doing a 3 month trial.

    cheers Sand
     
  6. Mary D.

    Mary D.

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    Hello. I am glad I found this forum. I am very frustrated and am looking for answers. I am currently on midodrine. I have been on it for about 10 months following several ER visits and a hospital stay last August. I am a very active person and I have always had low blood pressure without symptoms. I work out a lot and it is a great part of my everyday life. Around August last year I was suddenly near fainting while I picked something off of the floor. After walking quickly a few blocks earlier that day I also felt near fainting. I started to have components where I had orthostatic changes in my blood pressure when I go from sitting to standing. My already low blood pressure (90/60) would decrease even more when I stood and cause my heart to beat really fast for me (100-130). I have been seeing a cardiologist who has been kinda the one in charge with this thing. I have had an echo, a stress echo, a 30 day heart monitor. My cardiologist thinks my heart is fine. He thinks something autonomic may be causing this. I have seen a neurologist (an excuse for one), an audiologist, a gynecologist, and an endocrinologist. All the tests have come back negative. My cardiologist doesn't think it is POTS. The symptoms I feel daily have greatly effected my life. I have palpitations, on/off migraines, constant ringing in my ears, and an often increased heart rate from my normal. I am going to see a new cardiologist in the end of August. I am in the medical field and it is driving me crazy that no one can figure out what is causing this.

    Help!

    Mary
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Mary D.

    What is your resting heart rate? A jump of 30 or more from sitting to standing could indicate POTS. It does sound like an autonomic problem. If you feel like signing into chat we could discuss it back and forth. Most cardiologists aren't great with autonomic issues--neither are neurologists!

    Best wishes,
    Sushi
     
    ahimsa likes this.
  8. Mary D.

    Mary D.

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    Sushi,

    My resting heart rate is usually around 60ish. With the current situation, it tends to run a little higher like 70-80 (which is unusual). With the worst of everything going on my heart rate would go up in the 100's pretty quickly. I think the midodrine helps with not getting quite as tachycardic though.
     
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, the Midodrine should raise your BP and prevent some of the tachy. How much does your HR rise from resting to standing? (without Midodrine?) You can check it at one minute, two and three. That would give you a rough idea if you have POTS.

    Sushi
     
  10. Mary D.

    Mary D.

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    I am just wondering why my cardiologist doesn't think I have POTS.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Has he even checked it with a poor man's tilt table test?

    Sushi
     
  12. Mary D.

    Mary D.

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    I just measured my bp and heart rate. Actually it is not too bad today. It was 119/71, hr 75. After 30 sec 107/69, hr 83. After about 3 min was 108/71, hr 82. I know my systolic usually drops when I stand. My heart rate was doing pretty good today. Is POTS characteristic of a 30 increase in heart rate?
     
  13. Mary D.

    Mary D.

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    We didnt officially do a tilt table in the office. While in his office when I was doing pretty bad, laying down felt better, he had me sit up and I instantly got dizzy. He then said, "we'll we don't need to do a tilt table, you just had a positive test". At least that what I thought he said.
     
  14. Mary D.

    Mary D.

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    The first blood pressure was sitting. The following values were standing.
     
  15. Mary D.

    Mary D.

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    Without the midodrine my heart rate increases substantially from sitting to standing. Usually 30 points or more.
     
  16. Mary D.

    Mary D.

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    These values are with midodrine on board.
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    30 points or more going from sitting to standing is diagnostic for POTS.

    Have you looked at POTSplace.com ? Lots of good info there.

    Sushi
     

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