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Orthostatic intolerance

Discussion in 'Cardiovascular and exercise physiology (CPET)' started by Jonathan Edwards, Apr 6, 2019.

  1. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,110
    Location:
    UK West Midlands
    I have hypertension and i get Orthostatic intolerance as well. if we had regular reviews in the U.K. for people with ME i would have raised this before now. As things stand I’m hesitant to go to GP with it as I’m fairly sure i will get nowhere.
     
    Last edited: Oct 3, 2021
    Skycloud, alktipping, MEMarge and 9 others like this.
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    3,663
    My OI is much worse in the morning. I start off everyday with hope to accomplish goals. But before I know it I feel more ill, weak, faint etc. I have to lay down. I hate pacing. I really like to accomplish things, and keep at it until they're done. But I'm forced to break tasks down into small bits. :wtf::(:banghead:
     
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  3. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    3,663
    Interesting about caffeine. Although biomedical ME experts advise against caffeine. I wonder if the caffeine in tea and coffee have equivalent effects in nOH.

    So, what is nOH?

    I used to get post prandial exhaustion, to the point where it was like a mini-crash. I would feel weak, unable to walk, and my brain fog would increase. It didn't seem to matter what I ate. It frequently happened.

    Now that's a weird set of symptoms to try and explain to a doctor unfamiliar with ME.
     
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  4. Mij

    Mij Senior Member (Voting Rights)

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    8,171
    Neurogenic Orthostatic Hypotension
     
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  5. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Mij

    Thank you.
     
    Mij, alktipping and Yessica like this.
  6. mango

    mango Senior Member (Voting Rights)

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    Kalliope, Yessica, ahimsa and 6 others like this.
  7. Mij

    Mij Senior Member (Voting Rights)

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    8,171
    The sweating/hot flashes segment on how it relates to OI was interesting.
     
    Yessica, Trish and Peter Trewhitt like this.
  8. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,361
    Location:
    Budapest, Hungary
    I have a question:

    So I don't think I have OI, at least I feel fine upright and I really don't feel that it makes me worse in any way. However: I can have serious balance issues in the morning right after getting up and I'm not sure if this can still be a sign of OT or something else.

    What happens: I get up from bed and lose my balance right away. No dizziness at all, I also don't feel like fainting etc and I don't even actually feel unbalanced (I have a hard-to-describe awful feeling in my head though - brainfog on steroids). I just start to fall without warning, it feels totally out of my control. Then this lack of balance gradually disappears in 10-15 minutes (while still upright), depending on severity and I'm fine for the rest of the day (at least in this respect).

    When I was in my first year, when my disease was the worst, I had this every morning and at a dangerous level: I kept hitting the wall after getting out of bed, it really wasn't pleasant. Then it improved as I improved and it absolutely disappeared when I had that one exceptionally good year. Then as I got worse later, this also returned (on my bad days).

    So my question: does this sound like some sort of OI or not really?

    Edit: typos
     
    Last edited: Dec 12, 2021
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,615
    I retrospectively now believe I had OI issues long before I was consciously aware of them.

    I was not aware of any issues around being upright, though I was aware of being less confident in relation to balance, feeling less confident climbing or totally freezing when walking on a steel net over a four/five story art gallery atrium. It was not so much a fear of heights rather I had somehow lost confidence in my body.

    For many years before being aware of having any OI I had problems coming too first thing in the morning and have had to take my time getting up and getting going, though I not thought to relate this to OI prior to now.

    One thing I was increasingly aware of was that resting seated had become markedly less restful than resting with my head supported by a chair back, that was markedly less restful than lying fully prone. Initially I explained this by the fact that each required respectively less physical exertion to sustain, however once my OI became such that being upright was more of a limiting factor on my activity than the actual physical exertion involved the activity, I revised my opinion on how restful seating/lying were in line with how horizontal I was being more important than any physical effort to maintain the position.

    I suspect that being upright contributed to any PEM resulting from an activity, even though of itself it was at that time not sufficient to stop me doing the activity long before I was aware of any OI issues, just as doing something outside on a sunny day without sunglasses is ultimately more tiring, though at the time I may not be aware of any specific problems with light hypersensitivity.
     
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  10. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,361
    Location:
    Budapest, Hungary
    I do have that too. Not normally, not in my everyday life. However, I tried riding an electric scooter and also a bike and I realized I feel quite unsteady on them. Maybe OK in the middle of nowhere but it was way too dangerous for me in traffic. At that point I hadn't ridden a bike in a long time, so I thought I was just clumsy but it was the same with the electric scooter. I'm still not quite sure how much of it is just clumsiness and how much is actual balance issues.
     
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  11. Mij

    Mij Senior Member (Voting Rights)

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    8,171
    This could be vestibular dysfunction. I have this too, it is quite a different from orthostatic impairment but makes it worse. Worse in the mornings after lying down all night.
     
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  12. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,361
    Location:
    Budapest, Hungary
    Hm, I'm not sure. If you mean something like labyrinthitis, I've had it once and it was very different with a lot of constant spinning sensation and dizziness and nausea, which I never have with this. However, that was much much worse than these balance issues I have, so I can sympathize, that is something really horrible to have.
     
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  13. Mij

    Mij Senior Member (Voting Rights)

    Messages:
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    I've had this many times over the last 30 years, w/o nausea.

    I've been quite sick with a vestibular virus these last 2 years. My balance has been very poor, so I went to see my GP last March and she suspected an acoustic neuroma. She booked an MRI but I didn't go b/c of Covid
     
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