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Can you please explain how Orthostatic Intolerance affects you?

Discussion in 'General ME/CFS Discussion' started by 2Cor.12:9, Nov 4, 2016.

  1. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Hello. My doctor suggested I might have orthostatic intolerance because when I stand up from either a sitting position (riding in the car) or sometimes when in a reclining position, my legs become extremely weak (like they might even give out) for a minute or two and then I'm fine. No pain, just weakness. Sometimes I'll hear my heartbeat whooshing in my head at the same time. This does not happen every time.

    BUT - I also have problems in my spine both lumbar and cervical and need to get new x-rays and an MRI.

    So I was wondering how OI affects other people. Must one have a big blood pressure change or rapid heartbeat in order to confirm it?

    Thanks in advance.
     
    taniaaust1 likes this.
  2. Denise

    Denise Senior Member

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    OI(orthostatic intolerance) affects different people in different ways.
    This "brochure" has quite a bit of useful info that might help you.
     
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  3. Sushi

    Sushi Senior Member Albuquerque

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    For me, blood doesn't return to my head and heart very well so I wear support knee socks--which helps a lot. But, still, if I am upright too long (the time varies) I will have to sit down immediately to avoid collapsing or passing out. You'll sometimes catch me sitting on a sidewalk. It is a "must sit down now or else." Sometimes at home I can't even get to a chair and have to immediately sit on the floor.

    Mine is much worse since starting a drug for another condition.
     
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  4. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Thank you Denise. I will read that.
     
  5. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @Sushi - that's just awful. I'm sorry. :(
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    I think that often the way OI manifests.
     
  7. lnester7

    lnester7 Seven

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    1)puppils dilate orncontract inapropiately.
    2) pass out, dizzy or hear my own heart beat standing.
    3) Inability to being upright for too long.
    4) sleep issues.
    5) swallowing and gut motility issues.
    6) random crap but when I google PoTs they are related.
    7)brain fog and when I stand and my blood is not circulating I start dropping things ( cannot grip left hand).
    Meassurable measures:
    Raise in HR > 30bpm.
    very low BP (95/65) but drops on standing.

    Noté: I didn't pass out till way later maybe 3y after I had OI. A lot of plp do not pass out.
     
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  8. taniaaust1

    taniaaust1 Senior Member

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    For my my OI (I have POTS, orthostatic hypertension up to 197/138, orthostatic hypotension down to 40/0 or lower, narrowing of the pulse pressure to only 7. I also can get orthostatic arrthymia.. irregular heart beat when standing). The ways it can affect me (depends on which way it goes at the time) is

    - feeling faint or dizzy or shaky on standing
    - feeling faint, dizzy or shaky after Ive been on my feet for a little time
    - feeling pale
    - feeling weak or weak legs, legs can suddenly give way
    - pressure feeling in my brain (as if its about to explode, I think I get that symptom when my orthostatic hypertension has kicked in)
    - headache
    - legs can go feeling very heavy when upright

    - loss of balance
    - shaking and spasming and twitching, seizure like activity (when not enough blood is getting to my brain)
    - my ability to think declines (when blood isnt getting to brain
    - very low (to nil dystolic which forces me to lay and it can remain at such low levels for up to that noone should ever see on a BP monitor for up to 5mins. The hospital has put monitors on both my arms as they couldnt believe what they were seeing on the monitors. I can still be speaking ok at crazy low BP levels though unable to sit) to very high BP

    - blurred vision or even NIL vision (the world will go black and I completely loose my sight before some collapses)
    - feeling nauseus and like im will throw up if I dont lay down
    - collapse to unconsciousness (ive been unconscious according to someone for 3-5 mins after I collapsed due to being upright too long)

    - swelling of my optic discs (I believe it was caused by orthostatic hypertension I had at time. This could be putting me at risk of sudden permanent blindness)

    I probably get other symptoms with it too but those are just the ones I can think of right now off my head I get with it.

    You should have a tilt table test done or at least a poor mans standing test done in the doctors office to try to figure out what kind/s of OI you have as treatment can be different for different kinds.
     
    Last edited: Nov 4, 2016
    ahimsa likes this.

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