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Anyone with dysautonomia but no OI?

Discussion in 'Cardiovascular and Respiratory' started by Remi, May 25, 2019.

  1. Remi

    Remi Established Member

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    With a sports watch I found out my HR goes up with more than 30 bpm withon 10 minutes when I move my limbs, but not on standing still. I can put on a sweater lying down and have HR of 120, and can stand with normal HR as long as I keep still.

    I have many other symptoms of dysautonomia, such as thirst, salt craving, dizziness, blood pooling in legs, cold feet, stomach ache, hyperacusis. The typical remedies for dysautonomia help me as well. Support stockings, salt tablets, elevating bed head, SSRI.

    On PR and a dysautonomia forum I found no one with dysautonomia without OI. I have ME ICC dx and hypothyroidism, though the latter only became apparent in recent years and the ME and dysautonomia decades before.
     
  2. obeat

    obeat Senior Member (Voting Rights)

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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    I think so but, like ME, the concept does not exist in my country. There are no specialists and GPs don't know or care about it so I have no way of knowing.
     
  4. Remi

    Remi Established Member

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    Did you try the standing test at home? Do you improve on high salt and fluids intake? Do you need breaks doing simple tasks that involve limb movement? Do you have cold feet that feel more alive with compression socks? Or what are your symptoms?
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Honestly I don't bother anymore. The chaotic nature of ME symptoms makes any self-test too hard to interpret from random noise. I just avoid doing what seems to make me worse since I can't do anything about it without competent medical care anyway. I can't control my energy expenditure very well given my home situation so I have to allow myself enough slack to handle the things I can't control. Trying anything just eats too much into that and I've tried enough already, nothing makes a difference.
     
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  6. Remi

    Remi Established Member

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    I'm sorry to hear that. It easily gets too much for me as well. Within 2 years of starting to wear the compression stockings (after excruciating consultations with MUS type internist), I developed nerve pain in the foot and lower leg area. Now I can't even wear regular socks for long. Haven't been to neuro yet because of medical PTSD.

    That said, salt improves me so much. Once I have found the optimal dose of my self sourced thyroid meds that I adjust based on private labs, I will look into lowering HR.
     
    WillowJ and alktipping like this.
  7. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I don't have POTS right now, but I can't tolerate standing nonetheless. I can sit up more than other times. I am using fludrocortisone, which probably helps with the sitting up and the not qualifying for POTS (I stopped the medication only for 3 days prior to the tilt test).

    I have dizziness, and other signs and symptoms that go with dysautonomia.

    It was a nuclear cardiologist who is helping me with my dysautonomia. I don't blame you for not wanting to see a neurologist. If you go to just any random cariologist it probably won't be good, either, but if you can get a referral to a specific one who knows about dysautonomia that may go better. (Maybe that works with neurologists, too--I haven't tried that. The doctor my doctor knew to refer to for dysautonomia was cardio.)
     
    ahimsa and Remi like this.
  8. Remi

    Remi Established Member

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    It does sound OI to me if you can't sit up all the time. Glad the fludrocortisone is helping you. Did your GP rx?

    I used to think standing was hard, but it's the getting up and moving that is hard for me. I checked with pwOI and they don't have such a hard time squatting to take the laundry out of the washing machine, for instance.

    There is no good cardiologist or internist in my area that I know of and the one neuro that comes recommended by some pwME is fully booked for this year. The hospital I went to for dysautonomia was also recommended to me by pwPOTS, but they appeared to only believe in pure POTS and didn't test or know of other types.
     
    WillowJ likes this.
  9. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Thanks. :) That was the cardiologist.

    Getting up is hard for me, too. Moving is hard, but not as hard as standing still. Squatting or bending down is also hard.

    That's awesome that there's a neurologist in your area that other patients like. I wish you best of luck finding some help.

    The hospital where I had my test done had never heard of neurally mediated hypotension, and I am not sure if they know of any type of dysautonomia that isn't POTS. The tech didn't know the term dysautonomia. They claimed to rule out any form of dysautonomia, but as the tilt part of the test was only 5 minutes, I don't think they could rule out NMH.

    My PCP, however, said test or no test, I have "orthostasis", and that there are other kinds the test couldn't detect. So I feel good about her. :)
     
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  10. Remi

    Remi Established Member

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    Thanks! The neuro is not close, but not undoable for a one time visit, either.
    Oh wait, yes, the cardiologist helped you before you did the TTT. And a good PCP as well , my GP knows nothing about it.
     
    ahimsa likes this.

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