Needing to lie flat

Feeling pressure in my chest and forehead are the first indications that I need to lie down. I have pushed through in situations when I don't have the option to lie down somewhere but then my eyes get blurry and I can't process or absorb too much information

I don't feel dizzy but I do feel very unwell.

 

Is it significant that a PwME can have quite severe OI without feeling lightheaded?

I've had OI for nearly 20 years that has forced me to spend all but an hour a day lying flat or sitting with my feet raised, but I never felt light-headed. But recently, I got what seemed to be a viral infection (possibly Covid) and for a few really bad days got so light-headed in an upright posture that I couldn't eat enough food because I couldn't stay upright long enough, and was having to crawl rather than walk.

Luckily it improved and after a few months I'm hoping the light-headedness has gone, though my OI remains.

But my OI was already highly disabling. It seems that whenever I read about OI in the non-ME/CFS literature, it mentions lightheadedness. I'm not sure if that's the case for the ME/CFS literature.

Is my experience unusual for a PwME? Could the absence of lightheadedness in severe OI be a clue to mechanism?

 

Pretty much all researchers and probably clinicians dealing with ME/CFS seem to assume that OI involves reduction in cerebral blood flow and expect that to produce the sort of lightheadedness or 'grey-out' some people get in normal OI on standing from sitting.

I am pretty sure there are other forms of OI and that in ME/CFS the mechanism may be one of those. I now get OI if I have to stand in an art gallery. There is no lightheadedness. The signals making me need to sit come mostly from my legs. When I have flu I have another sort of OI and so on.

 

This idea of reduction in cerebral blood-flow has been worrying me a bit lately, because wouldn't it lead to brain damage?

 

All the evidence is that it doesn't. Brain damage from poor blood flow (ischaemia) is easily enough seen on MRI and people with ME/CFS don't have it when scanned. There are no reports of strokes in young people with ME/CFS.

Reduced blood flow has been reported in ME/CFS but as far as I know there is no indication that it is dangerously low.

 

I think an information sheet on OI from S4ME could be very valuable - describing the symptoms people actually get and the uncertainty over mechanisms. It would need to include a reference to postural orthostatic tachycardia (POT).

 

Thank you, that's a massive relief. I'd been wondering if I'd been gradually becoming more and more stupid without noticing. (Genuinely, it's hard to tell through brainfog and the lack of focus that comes through being stuck at home with the distraction-machine that is the Internet.)

 

Are there any reliable survey sources on this? @Trish is starting one here, which will be very interesting, but I wonder if there are good surveys separately for people with and without ME/CFS. The comparison could reveal some clues to mechanism if the presentations are different.

Are there any comparison groups we should be especially interested in?

 

I don't know. It would be worth a trawl.
I wonder if Ramsay mentioned it.

 

In Nacul's primary care study the "intolerance to be on your feet" item was reported in 61.1% of all cases (60.8% matching 1994 CDC, 79.6% matching CCC, 55.8% ECD); in Jason's symptom occurrence study the "dizzy after standing" item occurred in 46.9% of CFS cases.

Ramsay mentioned orthostatic tachycardia & various other autonomic symptoms in the context of some of the acute "epidemic" cases, e.g.

 

Yes, this POTS describes me. The lightheadedness and dizziness symptom I would describe as a feeling of a head heavy of water and I have to turn my head slowly because it feels like I am all at sea.

I would put exhaustion instead of fatigue. All the cells in the body felt crushed and exhausted.

 

Me too! Your description is better.

 

Gradually I have become used to 18 hours a day being flat. This gives me the remaining 6 hours as being fairly capable. Usually the transition from flat to vertical has very minor problems. But every time I have an MRI I experience a wobbly and weak transition and need a good minute before standing. It’s certainly not a fear thing. I always feel warmed in the machine which is pleasant and almost relaxed.

The normal ME must be flat moments are driven these days by muscle pain and attempting to feel better. Balance and being lightheaded used to be an issue 15 years ago.

 

Is POTS self-explanatory though?
Is the implication that a fast heart rate makes oneness to sit down? Tachycardia is normal after exercise like going upstairs quickly and that doesn't normally lead to a need to lie down.
Is the reason to lie down actually one of the others here too?

 

I too was concerned. I not only remembered my premorbid IQ scores, I ordered a copy from my old high school as a guardrail against my increasingly suspect memory. Over a span of 5 or so years, I had four new IQ tests. Turns out my concern was warranted; my IQ had dropped 15 to 20 points.

I figured the best way to see if blood flow was the issue was to have a SPECT scan. But I found SPECT scans had fallen out of favor, at least in the US. I had five MRIs done. Three showed brain atrophy, two came in normal.

What's that old punch line? You can't fix stupid.

 

Fair question.

When I stand up, and especially when I stand completely still, it feels like someone pulls a plug after a few minutes. Every ounce of energy just drains out of my body and I experience extreme weakness in my legs. I get extremely lightheaded and my vision starts to act funny.

These symptoms occur prior to the drastic HR increase (ECG), and I don’t exerpience BP drops (manual measurements by nurse). The HR goes from 120 to 160 after ~3 minutes.

I’m able to walk very slowly for more than 3 minutes, so the symptoms are presumably not from exhaustion.

I’m on 25 mg Metoprolol depot, and it really helps with the sudden onset of what I refer to as POTS symptoms.

 

Interesting that metoprolol should help since it should be reducing the tachycardia that seems to occur after the symptom onset.

 

Yes, I have no explanation for why it seemingly works. And the dose is really low as well, but it still lowered my standing HR by 30-40.

My cardiologist speculates that my ANS (edit: autonomic nervous system) is ‘very easily influenced’ due to the relatively large response. I have no idea about the validity of that speculation.

 

.? ANS = autonomic nervous system