Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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  1. EsetIsadore

    EsetIsadore

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    Clonidine was RXed for me at .1mg to take at night due to a recently diagnosed complex dysautonomia.

    I’m both curious to try it (since my heart at times pounds away at night) and concerned (since I sense that kicking into sympathetic drive is a compensatory mechanism vital to my body surviving the ravages of ME).

    Have any of you taken it? If yes: at what dosage? How did it affect your ME? Did you notice side effects?
     
  2. alex3619

    alex3619 Senior Member

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    There was a clinical trial some years back. Did not help ME but there is no telling with an individual. I tried it to no useful effect some years past.
     
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  3. EsetIsadore

    EsetIsadore

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    I did read about the trial just today. It’s okay with me if it were to have no effect. My concern is more that it could have detrimental effect. Did you have any difficulty coming off it?
     
  4. alex3619

    alex3619 Senior Member

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    No issues with getting off it that I can recall, but my memory is fubar these days.
     
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  5. out2lunch

    out2lunch Senior Member

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    I started taking it at the beginning of this month for my ADHD. I also had mild hypertension which the clonidine has lowered to normotensive levels. I take it in the morning, some days I also take a small amount of modafinil with it if I need extra help concentrating. I like the way clonidine makes me feel. I’ve always had this internal restlessness as long as I can remember, and the clonidine definitely tamps that down. Lowering my blood pressure is merely a bonus.
     
  6. kendonoghue

    kendonoghue

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    I was diagnosed with Hyper-adrenergic POTS by UToledo doing a NE blood level at resting and after walking around awhile. Clonidine has been the best medication for me, I've been taking it for the past year now. It's not totally cured me, but keeps me closer to 24 hour schedule and gives me some regular 1-3 of useful energy/time during an average day. I ramped up to .3mg b.i.d after starting on the .1mg b.i.d. dose.
     
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  7. EsetIsadore

    EsetIsadore

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    I’m glad to hear of some successes with it. I remain wary for myself. My BP is fluctuating often wildly - one day this week at 135/85 and the next day at 82/49, both lying down.
     
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  8. Desertstorm

    Desertstorm

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    One doc had me on clonidine as required as a shot in the dark. Took it one time as directed and BP dropped to something like 66 over 45. Was about dead in the ER and they had to place an IV in my foot to get fluids moving.
     
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