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

From the study:

The way they have defined it is confusing.

Postural = pertaining to position
Orthostatic = being upright

If someone is symptomatic whilst lying down - that is not 'orthostatic'. Persistent OI doesn't make sense. Shouldn't it be called postural intolerance? This would encompass someone who can not tolerate the postural position of being supine but tolerate the Trendelenburg position or Passive leg raised position.

Some people refer to POTS as simply Postural Tachycardia Syndrome (PoTS). Which now I think about it, is more accurate.

 

Ivabradine reduces heart rate without having any significant effect on blood pressure, unfortunately the doctors I've discussed with are unaware of this medication.

 

I absolutely agree. But I was just quoting what the paper said. I think maybe what they mean is that the dizziness cannot be attributed to the 'POTS' mechanism, whatever that is, that causes the tachycardia, at least in part because the dizziness can occur lying down and also in people without POTS. Maybe also the timing is wrong.

 

I experience various types of dizziness/vertigo, swaying/bobbing, feeling like I'm being pushed sideways as though I'm drunk, and intense sudden vertigo from changing head positions with rapid side to side eye movements.

The autonomic (?) symptoms are very different, it includes chest/ forehead pressure (no dizziness) and feeling overall unwell/distressed (not so much fatigue), and sometimes I feel like I want to cry (?). When I lie down it all goes away.

 

Before I took beta blockers I had tachycardia both when lying down and when sitting / standing. But I always had it when sitting / standing - well I still do, but not so severely.

The tachycardia when lying down appeared to be a result of adrenaline surges. Often the stimuli was not apparent, it just happened. Other times it was in response to minor stimuli such as the phone beeping for a text. I'd also get adrenaline surges when I was relaxing, possibly over compensating SNS swing in when relaxing into PNS.

 

Not necessarily. I take 4 different drugs the beta blocker alone is not enough, but I do know other patients that it is enough.
By the way, without OÍ meds I am house/bed bound. On drugs I work full time job ( I do not get as much PEM while on vasoconstriction drugs.
The only reason I ahve to stop the OI meds for some time was due to gastritis ( the pain on the tummy was too severe ). Fixed my tummy, now I am back on OI meds.

 

Hi, @Mij. I'm experiencing all these tooo (except the rem). Do they/you know why or what it is? Sorry I can't remember all the posts or look for them now. If you're up for saying, curious if you had it evaluated and how?

Gosh all this is hard that you and everyone is experiencing with this.

I had a push side ways so hard months ago, my first experience with this, that I thought it was the start of a strong earthquake. Went to grab something then started to black out, thankfully didn't and that only happened once. Now my push sideways ones are not that kind of intense yet have me concerned.

Thank you everyone for sharing. It helps to read what you write though I wish you all weren't or didn't go through theses things.

@Seven what you shared was very interesting and hopeful. I'm happy you found things that worked for you.

 

Hi @Yessica

I went to the hospital where they performed a Caloric Stimulation and a Electronystagmography test, both came back normal- no nystagmus. I also had a Brain stem auditory test that came back normal.

My ME onset was a sudden viral vertigo attack, I suspect it might have caused some sort of injury to the brain stem? Who knows, but I've suffered with all these symptoms for the last 28 yrs and just go with it.

I've never felt like I was going to black out though. I hope someone here can help you understand what that is.

 

@Mij

I often feel like I'm walking on a rolling ship.

When laying down, if I turn my head I may feel quite dizzy.


I get other dizziness too with those little ear crystals getting out of place - it's difficult to tell the difference between this and the ME dizziness.

 

@DokaGirl what is ME dizziness?

 

@Mij

ME dizziness - to clarify it's my own form of dizziness with the ME.

I've had the little crystals of calcium carbonate - called otoconia in the inner ear that get out of place and can cause vertigo. This was diagnosed for me, and I view it as different from my usual ME dizziness, as I can make this occasional form of vertigo go away with the epley maneuver - and I've only had it a few times, whereas the ME dizziness has lasted decades.

The first time this crystal problem was diagnosed a doctor, noting my "CFS" diagnosis on my chart, said about the crystals being out of place - "Well, they're real." Meaning I'm assuming that "CFS" is not.

For me, ME dizziness takes a few forms: a feeling of constant spinning, but at one level, and another is a feeling of falling,
combined with spinning, and another is the pushed sideways feeling. There is also the rolling ship feeling I get, and the listing to one side, and heading in that direction movement, although I hadn't intended to walk in that direction. This last one makes for interesting walking when I walk with someone else.

These are just my own versions of dizziness. This does make me wonder how physicians sort this out, and if some people's descriptions of whatever they are experiencing, unfortunately doesn't make the cut with specialists dealing with these problems.

ETA: modified for spelling, and clarity.

 

@DokaGirl you described pretty much what I experience. The different types of vertigo/dizziness is all related to ME because it started on day one of ME.

My GP also experienced this in med school so she understood. I also had 'extremely' elevated anti-thyroid antibodies at the time so she knew I wasn't making up how ill I was.

 

This is assuming the compensatory increase in HR is sufficient. In my experience, this is definitely not always the case. Also there is a thing with less efficient circulation if the heart doesn't get enough time to fill in between beats. Ivabradine made me slightly more clearheaded, which may be due to this.

I think the dizzyness is a consequence of poor circulation. The tachycardia can be a factor in that, but not the only one.