Needing to lie flat

Midodrine has been shown to help post-spaceflight orthostatic hypotension.

It appears that orthostatic intolerance following space flight is not explained by a single mechanism.
LINK

 

I was reading Hal Walker's blog today (he has ME/CFS and writes about living with the illness), and it reminded me of this thread so I thought I would share it here.

https://halwalker.substack.com/p/in-search-of-a-place-to-lie-down

Here is a snippet of his description:

 

Edit: (See above for the snippet. It didn't copy.)

Spot on! That's exactly how it is for me, even down to the 10 minutes. It wasn't like that in the beginning for me though, just decades later. The occasions I need to lie flat have increased as the ME worsens. "The life force is not there and I need to get close to the ground" resonates so much.

 

Early in my ME, it felt good to lie on my woodworking bench, with sunlight shining on me. Not close to the ground, but the hard surface felt better than a soft mattress at the time. I don't think that was an ME-specific thing though, but rather that "feeling lousy" that also occurs with a viral infection.

 

I think that is particularly relevant. My interest in this is to distinguish the need for respite or rest in ME/CFS from the need in conditions said to invoke 'fatigue' - such as heart failure, MS, RA, renal failure, old age. The situation for ME/CFS does seem more like that in a viral infection - where you wouldn't even talk of fatigue, just feeling lousy. I suspect there is still a distinction but it seems closer.

 

Do you think you're getting closer to something that might be measurable in the blood when these episodes are happening?

 

I've had plenty of experiences where despite doing the same sorts or levels of fatigue-causing activities--or resting--the previous days, I'll feel that I don't want to go for even a short walk, or I'll feel like hiking for hours. The determining factor is not previous physical activity, but some sort of biochemical activity somewhere in my body. That biochemical activity may change due to foods, microbiome, or other such factors.

I don't consider normal physical fatigue to be in any way related to my ME.

 

The compulsion to lie flat is unlike anything else and impossible to ignore. It feels like it is an issue of blood supply to the brain. I have lain down on a filthy street in the rain, on the floor of a pub, and twisted myself to fit into the foetal position across the seat cushion and tray table of a single economy aeroplane seat (I am a slim but average height woman).

When I am very severe, even lying flat is not enough. My family position me so my head hangs off the bed to be lower than the rest of my body for around ten minutes until the feeling resolves. When very severe I often fall asleep with my legs (and sometimes torso) elevated and then roll myself off the support and back to flat after an hour or so before the pain in my legs gets too bad.

It seems to me different from but also related to fatigue. The connection seems to go in both directions: more fatigued means more likelihood of needing to lie flat, but more lying flat also means less fatigue. I still sleep without a pillow although this is not currently necessary for me to be comfortable, as I find it helps my energy levels the next day. Although there is no research to support this, it is absolutely my observation after forty-five years that lying flat whenever possible is the best way to maximise the energy envelope.

My other symptoms are also relieved by lying flat. When I am well enough to sit, everyone in my life knows I can’t think and sit at the same time. If you want to get any sense out of me, make sure my feet are no lower than my heart.

 

I relate to this a lot. The more I am upright, the more I feel the need to then lie flat. And the longer I am upright, the longer I need to lie flat to help relieve the symptoms. It feels connected to OI.

And yes, the worse I am feeling, the more it feels like my head needs to be the lowest point on my body. I will sometimes lie flat, but with a bend in my knees so they are the highest point. Perhaps that helps get the blood back to my head better than being perfectly horizontal, but sometimes I'm too tired to support my knees in that position.

 

Do brain scans not exist that could look at microcirculation when upright vs horizontal in PwME and compare it to controls? Or are the scans too low-res?

Wondering if AI pattern recognition could do anything here, even with conventional MRI scans.

 

Part of my drive to sit resembles having very low blood sugar. The weakness, dizziness, spaciness, and that strange feeling that you can't quite focus your vision are all there.

Having to stand on the spot also makes me shaky, panicky, and incoherent—I can't make sounds that even resemble words. It starts to come on within a minute, yet on days when I'm well enough to potter around, I can be upright for substantially longer. As long as I keep walking a few paces it holds back the onset of feeling ill.

 

I hope I'm not repeating an issue that has been brought up before, but I was surprised to see the following as the only descriptions of OI in some of the basic info about ME/CFS given by the MEA, AfME and the NHS (my bolding):

MEA: Orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position' (here) and 'Orthostatic intolerance – problems with pulse and blood pressure control leading to feeling faint/dizzy when upright' (here).

AfME: 'Problems with the nervous system, such as poor temperature control and dizziness on standing or sitting up and hyper-sensitivity to light and sound'.

NHS: Last symptom listed under 'Other symptoms: 'feeling dizzy, sick or fainting when standing up from a sitting or lying position'.

Dizziness with OI, or OI only manifesting upon standing up, doesn't reflect my understanding of OI in most PwME. Am I wrong? Do we know the percentage of PwME who experience dizziness?

If I'm correct that dizziness in OI isn't the norm in PwME, what could that mean, biologically? Is it a clue?

@Jonathan Edwards?

 

I don’t know if it’s just OI, or even within that term OI what I really mean I have as to why I need to lie down

I do think my whole body is exhausted so some of it is just about supporting neck, back arms etc from doing any more work

and then there is the gravity drive on top top get head down ie the ‘lie flatter’


It somewhat says it all about the approach of research to us that there is today wheee we’ve had this discussion on s4me and picked this up vs all of this same stuff given these are sources that have decades to have done such looking into the same thing

I don’t know if some of these in the examples listed come from research or just being assumed or chucked up as best fit or people either not being heard or patients without the right other patients ti talk to being able to elucidate what actually goes on that even this obvious phenomenon isn’t noted or looked into given the decades

I assume the official bps clinics didn’t because they saw it as behavioural

 

I have not read this thread, but I’m just chipping in to say that I experience four reasons to lie down (I have LC, POTS and about to be diganosed with ME:CCC):

1. POTS: Self explanatory
2. Crushing fatigue
3. Feeling of being under many G
4. Dizziness (mistakenly wrote nausea)

This has been the case since day one.

 

No dizziness with my OI. And I can have very fast changes. Sometimes 50-70bpm heart rate raise in about 1-2 minutes after standing and staying still. Feeling sick and other kind of worsening symptoms.