Needing to lie flat

Sometimes I wonder if I don't have some sort of wierd narcolepsy where half of me is saying "sleep NOW" and the other half is refusing to allow me to fall asleep.

Edit to clarify, the sleep drive would be the reason I felt the need to lie down.

 

Yes I know now it says elevate. And realising that’s what I do anyway with the pillows and cushions and zero gravity chair

But realising I might have been saying things wrong or not specifically enough for a while now when I say put feet ‘up’ its ambiguous as I mean like on foot stool , or just meaning not on floor. Then realised when I say that what I’m actually doing anyway is higher than that. So I’m now thinking what angle becomes elevate vs raised legs vs feet up

 

If you put on a really good tv programme that has subtitles do you find that you then can’t keep your eyes open?

 

I don’t think I’ve ever tried it without or would be comfortable enough . In the past when I’ve been in hotels etc I’ve used towels or even bought extra pillows if there weren’t extras available?

but I have so many pillows and move position so much I couldn’t guarantee what angle I sleep the most hours at when I think about it

I haven’t raised the bed itself though and often sleep on my front and side at various points too

 

Me too

 

Nopee

 

It's difficult to get used to. I tried to train myself and bought one of these but sent it right back. Not comfortable at all.


So now I just place another latex pillow over my ergonomically contoured latex pillow and it provides enough lift.

 

Have read somewhere, sorry I don't know where, that a wedge form does not help. The whole bed has to be lifted on the head side in order to work.
In the NASA study the head end was down to simulate space conditions.

 

This is one of the studies where NASA put subjects in a 6° head-down tilt position.

Do you mean lifting the whole bed on the head side has to include the chest area in order to work?

 

Wow that is quite an angle even vs eg three pillows

 

Yes. In other words; the wedge starts, slightly, at your feet.

 

If you want to try: please check first if your bed can be raised on one end that way.
I have a wooden bed and I'm not sure if I'll end up on the floor with a pile of wood that used to be my bed.

 

Yes you have to use bricks under the bed head legs or buy an expensive wedge of hard foam that runs fat side first from head to toe. So there is no kink in your body.

I am like you afraid of bed balanced on bricks collapsing.

 

Haven't got the energy to read all of this thread at the moment. But getting horizontal is my first port of call. If I start going downhill I absolutely have to get horizontal asap, and if I can't, things just get worse and worse until I can. If I'm lucky I'll start feeling better and can try getting up again in around 30-60 minutes for another hour or two of limited activity. That's how I've been living for 10 years and I'm mild.

 

I definitely agree with this.

 

to state the obvious it probably needs to be part of the objective measures (although cue 'lying in bed all day causes it' nonsense)

 

I don't know if you had time yet to read into the BBB barier and OI and lying down as a protection or repair mode.

When OI is expressed as POTS (heart rate up) or dOH (BP drop) or a mixture of heart rate up a bit and BP dropping a bit as it happens in my ME/CFS, could a lowered blood volume also (try to) protect the BBB?
Astronauts have their blood volume returned back to normal within weeks, when returning to earth.
My blood volume is not normal, I think, even after 33 years. Do I still need that lowered blood volume for some unknown reason?

 

@Turtle I've got a list of papers to read up on, though I don't know if they'll end up supporting the idea that lying down could be protective. Eg here's a recent review article (available at PubMed) looking at mechano-sensing + mechano-signaling (together = mechano-transduction) —

Integrating molecular and cellular components of endothelial shear stress mechanotransduction (Sep 2024)
Gavin Power; Larissa Ferreira-Santos; Luis A. Martinez-Lemus; Jaume Padilla

The lining of blood vessels is constantly exposed to mechanical forces exerted by blood flow against the endothelium. Endothelial cells detect these tangential forces (i.e., shear stress), initiating a host of intracellular signaling cascades that regulate vascular physiology. Thus, vascular health is tethered to the endothelial cells’ capacity to transduce shear stress. Indeed, the mechanotransduction of shear stress underlies a variety of cardiovascular benefits, including some of those associated with increased physical activity. However, endothelial mechanotransduction is impaired in aging and disease states such as obesity and type 2 diabetes, precipitating the development of vascular disease. Understanding endothelial mechanotransduction of shear stress, and the molecular and cellular mechanisms by which this process becomes defective, is critical for the identification and development of novel therapeutic targets against cardiovascular disease.

In this review, we detail the primary mechanosensitive structures that have been implicated in detecting shear stress, including junctional proteins such as platelet endothelial cell adhesion molecule-1 (PECAM-1), the extracellular glycocalyx and its components, and ion channels such as piezo1.

We delineate which molecules are truly mechanosensitive and which may simply be indispensable for the downstream transmission of force. Furthermore, we discuss how these mechanosensors interact with other cellular structures, such as the cytoskeleton and membrane lipid rafts, which are implicated in translating shear forces to biochemical signals. Based on findings to date, we also seek to integrate these cellular and molecular mechanisms with a view of deciphering endothelial mechanotransduction of shear stress, a tenet of vascular physiology.

Link | PDF (American Journal of Physiology-Heart and Circulatory Physiology)

 

From another thread:

Our problem is that our symptoms force us to lie down a lot but I can see the vicious circle. Unlike physical exertion, is this an area where PwME are likely to have any capacity to very gradually train ourselves up out of it? I seem to remember a research trial of standing for longer and longer (or tilt training? Prof. Julia Newton?).

Do we know how astronauts recover from the OI they experience when returning from space? Do they just recover spontaneously?