Orthostatic Intolerance in chronic fatigue syndrome, 2019, Garner and Baraniuk

I have only looked at the abstract but I don't follow how you can have OI lying down if 'orthostatic' means standing up.

Interesting that they say that orthostatic tachycardia does not account for OI symptoms.

 

I have severe OI but normal HR. Can anyone with increased HR clarify if treating the HR with drugs reduces OI?

Could dizziness not be a vestibular problem? Is this ever assessed in ME?

 

@obeat I just posted this on the OI poll.

I was dx with BPPV. I also had a brainstem auditory test which came back normal.

 

Thanks, there's also vestibular migraine. Much more to learn.

 

Yeah, I'm thinking what symptoms he is ascribing to OI may not always be OI.

 

Vestibular 'dizziness' or vertigo is not really what most people call dizziness. We all learn what people mean by dizziness as children from fairgrounds or feeling faint. But with a vestibular problem the world moves instead of you. I have had it twice with acute vestibular episodes, presumed viral. (I have also had it as an adolescent when given neat gin as a joke by an older cousin.)

I doubt that out of 39 people with ME more than one or perhaps two would have vestibular symptoms at a time of testing, which would presume they were well enough to get to the test site. Most people with vestibular problems cannot get off the bed. But like nausea I suspect there are several causes of what people ordinarily cause dizziness, including causes that leave you dizzy even lying down.

The authors seem to have redefined OI as dizziness or lightheadedness, regardless of position. That seems very confusing. But the results still look interesting. It seems that even in people with tachycardia the dizziness does not seem to be attributable to the tachycardia.

 

There is also Mal de Debarquement Syndrome, ppl who get migraines experience this too. I have this, I feel like I'm swaying, bobbing on a boat. This can cause fatigue and wanting to lie down.

 

"Goofiness"? That's an OI thing according to this study? Fair enough.

The boat swaying, which I can identify with, I associate with vestibular issues, but who can say? For me, it's the whole head thing, including sight and hearing - but balance is definitely off, enough so I take nausea meds sometimes to mitigate it.

There are a few infections that I know that can cause this, but I would imagine autoimmune causes also have to be considered.

I was told at the NIH that they could not determine what infection was causing my vertigo/dizziness/imbalance without doing a biopsy. I declined.

I think Baruniak associates brain stem damage with OI symptoms, but perhaps I am misremembering that.

 

@duncan a biopsy of what? Mine was determined as viral, but what type of virus was of no concern.

 

Well, I don't recall. My take away was they (two doctors) were talking about a brain biopsy, but the vestibular includes things outside the brain. They were intent on describing how screwed up my vestibular system was, and I was trying to affix a cause. They said something to the effect it could be any number of viruses or bacteria involved.

Sorry. My memory is fuzzy. It was a lot of testing, though. Hours. I wanted to know after investing that process what was behind my sea-sickness, so to speak, but they could not commit.

 

A brain biopsy?

 

Maybe it was a mind biopsy - to check on the mind-brain interaction?

 

@Mij, my csf results were inconclusive because they didn't do all the tests they should have, given the protocol. So one of the doctors reviewing the results of the vestibular testing was just opining about testing for any brain infections that might be behind the vestibular issues.

Technically, you could do a brain biopsy, but no one ever does. It's pretty much a post-mortem thing I guess.

Like a Vulcan probe?

 

The fear may be that it would be both a pre and post-mortem thing. Taken pre but examined post.

 

This study is interesting, as I have felt faint even when recumbent, and have wondered why this scenario has not been noted earlier in ME studies. My tachycardia which happens while standing, and sitting up, may also happen when recumbent. I also feel nauseous, light headed/faint, a bit dizzy, I may get a headache, I become uncoordinated, weaker, and have trouble thinking when I sit up for too long. I often feel light headed and have a headache for several hours after having sat up for too long. This is regardless of what I try to alleviate the feelings of faintness.

I rarely stand up for too long, as that would likely cause me to faint at some point. Standing in line is quite difficult.

I am concerned about my tachycardia, as it is untreated. Decades ago a drug was suggested for this, but my BP used to drop a fair bit with standing, and I'd feel faint, which this drug would exacerbate. I never took the drug, but am now wondering if I should investigate getting some treatment for the tachycardia. I had an abnormal ECG a few months ago. Not REALLY abnormal, but enough to make me wonder. I was not told about the abnormal result. I found out several months later - maybe it was not notable for the physicians who looked at it. A chest X-ray done at the same time was within normal limits. I have a couple other cardiac issues, but they are mild; I don't get treatment for them.

I'm not asking anyone to recommend or suggest anything. One of many frustrating questions and concerns about ME is, how does it effect one's heart? One Canadian specialist said ME can cause valvular disease. If tachycardia can lead to problems such as heart failure, as per the Mayo Clinic website, and many with ME have this symptom - it is astounding that ME can be so irresponsibly dismissed!

I hope there are many more studies investigating cardiac, and OI issues for ME.

I've looked up START - couldn't find anything on it. Could someone explain what that is?

Thank you!

 

START = Exercise-Induced POTS, if I understand correctly. It may be a Baraniuk thing, not sure.

 

I think they're saying that dizziness and lightheartedness can occur in some ME patients both while standing and while recumbent, so one shouldn't assume that they are OI symptoms without checking to see if they also exist while recumbent. If you get dizziness symptoms regardless of position, I suppose it doesn't rule out OI as an additional factor when standing, but it probably would rule it out when lying down.*

Dizziness and lightheartedness certainly makes standing more difficult to deal with (poor proprioception), but I've known them as a constant feature of ME regardless of position: standing, sitting or lying down. I'm not talking about spinning vertigo, but a constant bobbing sensation, somewhat like being on a small boat. Whatever it is, it was a kind of dizziness that was measurable at an otologic clinic in Los Angeles as far back as the early 1980's.

[*On the other hand, my otologist said that my kind of dizziness was sometimes seen in cases of poor circulation to the vestibular/balance centers. Though not driven by OI, it would still be a matter of reduced circulation, which is, after all, what OI would produce as well.]

 

I think it is important to put pts in a position where their legs are above the heart, not just supine. I often have OI symptoms which are relieved by elevating the legs.

 

Why would dizziness be caused by tachycardia?

From what I understand the tachycardia is compensatory for inadequate blood flow to the head, which allows for the person to be normotensive. If you take away the tachycardia then they would become hypotensive.

Also, is there even a way to reduce HR with medication without also dilating the blood vessels? Beta-blockers do both. I have been taking propranolol for the last 2 weeks, my HR is lower, except now I sometimes faint upon standing.