Anyone else have dysautonomia without OI?

[Remi]

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]

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.

 

[Remi]

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?

 

[Remi]

Bump

 

[toyfoof]

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.

 

[Remi]

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]

Did you try salt?

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.

 

[Remi]

My internist said I could have up to 12 grams a day in total, so prescribed me 6 grams in tablets. Salt in urine was low, that's what she based it on.

 

[valentinelynx]

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?

I haven't done a formal standing test at home; I really should do it someday!
My doctor believes I have MCAS. I am on a lot of meds for it. My main symptoms are nasopharyngeal allergies (even on double doses of histamine blockers plus montelukast and H2 blockers and oral cromolyn) and gut issues. Also some mild skin reactivity.

Thanks for the input!

 

[Remi]

Then it would be POTS/OI, that often occurs together with MCAS afaik. I found home standing tests hard, can't stand still that long. Easy to move a little. At hospital I'm on adrenaline from prep and travel, then I can stand still for 15 min.

I haven't done a formal standing test at home; I really should do it someday!
My doctor believes I have MCAS. I am on a lot of meds for it. My main symptoms are nasopharyngeal allergies (even on double doses of histamine blockers plus montelukast and H2 blockers and oral cromolyn) and gut issues. Also some mild skin reactivity.

Thanks for the input!

Still no one else with limbmotional intolerance?

 

[Remi]

I found 7 others who have it in a Dutch ME group. No explanation so far, doctors don't know.

 

[Pearshaped]

My BP drops continuously+always upon standing while HR goes up 20-50 beats.I've been told I do not "only" have POTS.(whatever that means..)
purple legs and lips when standing,trunk is sweating,extremeties are dead cold, tingling skin,blurry vision..

I'm still puzzled about this whole dysautonomia thing.
I didn't even know its possible to have dysautonomia w/o OI.its so complicated it seems.

Researchers and (especially!) doctors: please catch up on this topic.

 

[Remi]

@Pearshaped, is that a combination of Neurally Mediated Hypotension or orthostatic hypotension and POTS? Because POTS alone doesn't have the BP drop.

I found at least 2 more on Twitter with my problem. It definitely deserves attention. Staying under AT is impossible without being completely still.

Update on quitting SSRI: dizziness and hyperacusis have stabilised and aren't as bad as when I came off. I don't need the elevated bed head anymore, either, but that is probably unrelated.

 

[Pearshaped]

@Remi yes i strongly suspect NMH and POTS altogether but as i've said above i was just told "not only" to have POTS.

Nice to hear some of your symptoms have stabilized.
hope it stays that way.

Elevation of the head is also a mystery to me,since i feel a lot better completely flat without pillow.even with a small pillow i feel worse..i still don't get it.

 

[Remi]

@Pearshaped How do you feel with the head lower than the rest of your body? Some people with OI say it helps them (not for sleeping, I guess, but for short symptom relief). It doesn't help me.

 

[Pearshaped]

it feels better.but the thing is why are they recommend to elevate the head of bed when its useless or even worse for some ppl? whats the difference between OI and NMH? (is there a diff.?)
you said you pee 4L minimum.(wow)
have you checked for diabetes insipidus ?

 

[Remi]

It does help to reduce peeing at night. Although I don't seem to have that problem anymore. But I don't have OI. I think OI is the umbrella term and NMH is a specific type of OI. Like POTS is.

Many pwME "drink like a fish and pee like a race horse". It's an attempt of the body to increase blood volume. Salt in urine will be low even with good salt intake, because the body tries to store it.

An internist ruled diabetes insipidus out (I think, they weren't competent), but did not know about dysautonomia. They said 135 mmol salt per liter urine was fine, though it should not be below 140.

 

[Pearshaped]

ah I see thanks for explaining it for me.
Yes I loose much of fluid too(but never ever 4L like you)
yeah internists are mostly clueless..
but i guess its all part of that ME puzzle
this salt and fluid thing..

my doctor told me I was loosing more fluid than i drink.(according to a test)idk what my salt levels in urine is but in blood,sodium was too low.
Doctors told me that but didnt think it has a relation to my salt cravings i had...
have you tried florinef?

 

[JES]

It does help to reduce peeing at night. Although I don't seem to have that problem anymore. But I don't have OI. I think OI is the umbrella term and NMH is a specific type of OI. Like POTS is.

Hm, it still seems to me like some form of OI if your symptoms improve with elevating the bed. You don't get any HR elevation going from lying to standing up (still)? The definition for POTS would be to have a 30 BPM or more increase in given scenario.

I do have POTS and OI with standing but I also notice some worsening if I e.g. walk up the stairs, it just feels like there is not enough blood left to supply my muscles and keep enough going to the brain as well. So I can see why having low blood volume would be creating worse symptoms when exercising or moving.

IMO it's a technicality whether you have OI or not, I still think it falls under the same umbrella of issues with ME/CFS. I had some sort of dysautonomia for years, but only developed bad OI and POTS in 2017. The issues with requiring salt and urinating in the night are all too familiar with me.

 

[Remi]

I don't meet the 30 bpm requirement and I don't pee at night anymore, but I did for a while. I was dizzy upon waking as well, which resolved. I may still have some OI, but would need a tilt table test.

@Pearshaped, I haven't tried any dysautonomia meds yet, as I still need to get a referral for a cardiologist. Then explain my type of HR peaks to them.