Anyone else have dysautonomia without OI?

Dysautonomia and which type?

  • OI (POTS, NMH)

    Votes: 6 85.7%
  • Dysautonomia when moving limbs

    Votes: 1 14.3%
  • No dysautonomia

    Votes: 0 0.0%
  • Other type of dysautonomia, post in comments

    Votes: 0 0.0%

  • Total voters
    7
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My HR increases with more than 30 bpm within 10 minutes of going from non moving to moving position. This can be lying or sitting down and moving limbs, or from standing still to walking. I don't know what BP does, bc my and the hospital's BP device don't register BP when not still. In rest, both HR and BP are normal. The two internists I consulted both dismissed it, including my Polar A370 results of weeks.

I have bad circulation that improves with compression stockings, low salt in urine so got rx for 6 grams of salt tablets to add to 6 grams in food. Drink like a fish, pee like a race horse (4 liters minimum)minimum. Elevation of bed head helps dizziness in the morning and pee frequency at night. When I still exercised, I stayed dizzy and without focus for hours afterwards.

Without SSRI I'm less stable on my feet and the sound/light sensitivity is unbearable. On it I still frequently wear ear plugs outside. IBS is better on it, but stomach ache I don't know, because I can't even halve my dose without symptom relapse.

Until now I've only read about OI in pwME. Could not find anyone on the dysautonomiaintl.org forum with similar HR peaks when moving limbs.
 

valentinelynx

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I don't know what to make of my symptoms in the context of POTS & dysautonomia. The thing that most convinces me that have orthostatic issues is that standing up feels bad. Much of the time, I feel just fine if lying down, but as soon as I stand or sit up, I feel weak and ill. Autonomic signs are limited to an increased heart rate. Even on high dose clonidine, which blocks sympathetic nervous system activity, my pulse climbs from the low 50's lying down to the 80's, 90's or low 100's with upright activity. Sometimes it is clearly a rise of 30 bpm or more, other times not. My blood pressure does not seem to drop, or at least I've never caught it dropping after a period upright. I don't think any doctor has observed the rise in my heart rate on standing, because the social stress of a doctor's visit ensures my pulse is high throughout the visit.

Other dysautonomia symptoms I have are excessive sweating, especially of the head, flushing (usually of just one side of my face or one ear) and problems with GI function. I had a very basic tilt table test, done by a neurologists office. It was negative. I wondered how accurate it would be, however, given that just interacting with people, especially strangers, makes my heart rate and blood pressure soar. This rush of adrenaline feels like it overrides the underlying process so my heart rate and BP would likely stay high the whole time. Each time my BP was taken, it required a social interaction, because it was done manually. Often the technician would engage me in conversation, and my BP is always high when I am talking.

I also had skin punch biopsies for small fiber neuropathy that were negative. This really surprised me, because I have all over pain, and sensitive burning skin that just feels neuropathic.

Things that go against my having OI/POTS are that I never feel lightheaded on standing, and I don't faint. I don't know how common it is to have POTS without these symptoms. I do sometimes get "reactive hypoglycemia" with shakiness, lightheadedness, and weakness a few hours after a high carb meal, and this may represent a form of dysautonomia: at least one study makes this connection.

Well, those are my thoughts on POTS/OI in my case, for what it's worth.
 
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The staff should know in advance of your HR during visits and accommodate you. Talking as little as possible, allowing you to rest before tests. Not sure if it would help you and entirely unsure whether staff could provide this. But it's an impediment to any HR test and you will not be the only one.

Fainting is not necessary for OI dx. Just HR increase of more than 30 bpm within 10 minutes of standing up after lying down. Did you ever measure your HR during the bouts of reactive hypoglycemia? I have that same sensation sometimes without increased HR and am going to check your link. Seems to come out of the blue and feels like I had a lot of caffeine.

Have you looked at MCAS? Friend of mine's HR lowered considerably with meds. It sounds like you have a different type of dysautonomia, but did you do a standing test at home?
 

toyfoof

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I did the NASA lean test (https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf) yesterday and it didn’t turn up anything remarkable. My HR went from the 70s resting to the 90s after 10 minutes standing, and my BP was unpredictable but stayed pretty close. My blood definitely pooled in my feet, they were mottled and purple at the end.

I do feel that I have some kind of OI because I get dizzy upon standing and can’t stand too long. But my main problem may be low BP (average 95/65) and probably low blood volume. I’m drinking some licorice root tea to try to get my pressure up. It’s very hard to get out of bed because I feel there is just no volume to me.
 
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My HR goes up sometimes when standing, but not always. I can't stand very long either.

Did you try salt? It helps me greatly against that "empty sack" feeling. It woukd also raise your BP.
 

toyfoof

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I don't take salt tablets or any specific supplement, but I've been adding salt to my general diet for the past year or so (this is weird for me, as I was raised on no salt, because my whole family has high BP, including myself until about 2 years ago when my ME/CFS went from mild to moderate). It's probably worth looking into adding it specifically; my doctor tells me I really can't have too much.