Lying down & concentration: Klimas comment

[Persimmon]

Over a long period (since getting sick), I've been aware that I concentrate better lying in bed than sitting up at my desk.

Just recently, it dawned on me that this might be explained by orthostatic intolerance / neurally mediated hypotension.

Then by coincidence, I happened upon a video by Dr Klimas, in which she talks about using a foot-stool to raise your feet while sitting, so as to limit venous pooling within the legs.

So, I have 2 questions:
- Is OI/NMH the most likely explanation for better concentration while lying down?
&
- Do others out there experience this too?

 

[meandthecat]

I have found that when I begin to 'drop', if I lie down, and it has to horizontal, sitting won't do, then after a few minutes things start to even out. It's a sort 'global' thing where everything mental and physical seems to get dragged in. In a while I carry on and as long as I don't push it I'm ok.

It could be number of things but the chances of getting it diagnosed here with my GP is pointless. I find that gently ramping up exercise and using coffee gives me more tolerance.

My life seems to have become a series of pragmatic workarounds.

 

[LisaGoddard]

Hi, I definitely think better when I am laying down ie horizontal. It is as though my brain begins to wake up as I lie down. I guess that I have OI but don't know for sure. My blood pressure is always low - either in the 80s or 90s.
Lisa

 

[anciendaze]

This was the clue which convinced me my problem was not simply "depression" or several other mysterious conditions doctors suggested. I was privately measuring my health in terms of the number of hours per day I could spend upright before I ever heard that there were doctors doing this, like Dr. Bell.

I also have problems with sitting upright. I have to be pretty close to supine to recover from exhaustion.

My blood pressure is likewise almost always low. When this problem develops my fingers turn cold and white.

Comment for LisaGoddard: be careful with the coffee. I now drink tea instead, but even so I limit my intake of anything with caffeine to one cup in the morning, when I am very sluggish. When I drink it later in the day I am in danger of staying awake all night. Many people can't believe the effects can last as long for me as they do.

Like many others here my autonomic nervous system is messed up. The sympathetic branch is easily overstimulated. I now have an implanted vagus nerve stimulator to compensate by stimulating the parasympathetic branch. This allows me to sleep without medication.

 

[Valentijn]

Yes, there have been studies showing that most ME patients have OI/NMH/POTS. The usual cures for those (tensing muscles, developing better muscle tone, etc) usually won't work for us though, so getting closer to horizontal is helpful.

You can also try to look into what is causing your OI. In my case it was probably my low levels of norepinephrine, so taking an NRI has been extremely helpful.

 

[Persimmon]

I was aware of having an OI problem (as verified by a tilt table test) but hadn't appreciated the difference between sitting and lying - perhaps because symptoms like light-headedness are pronounced when standing, but not so different between sitting and lying.

Following on from the replies in this thread, I'm going to try lying down rather than sitting when I begin to fade.

anciendaze,
might I suggest you start a thread dedicated to your implant. I see you've written a little more about it in another thread, but it sounds fascinating and worthy of more attention.

 

[xchocoholic]

A word of caution ..
I have a freind who's implanted stimulator stopped working and there's no way to remove it.
His doctor knew this might (would?) happen ..

I have to lay down too and it normally takes me an hour to recover from hypoperfusion.

We have a thread here on how to do a diy pmttt (poor man's tilt table test). By doing this
a couple of days in a row for a few hours at a time, I realized I had pots. And that my hr will
not come back to normal if I try to get up before I've recovered from hypoperfusion.
I get petite mals and sob with my pots.

Dr peckerman explains how hypoperfusion could be causing some of our problems. The link is
here on pr.

Small rant .. There has been some ground breaking info on me/cfs that's been ignored. I can't
believe Klimas doesn't go into details on laying down vs putting your feet up. The leaky gut
research is important. As is the info about our cytokine levels being too high and how to reduce these.
The NIH states that celiac is being misdiagnosed as cfs. Mast cell research was ground breaking too.

How are they missing all of these ? Are most traditional doctors completely void of common sense or logic ?

Sorry that turned into a big rant .. Lol .. Tc .. X

 

[AFCFS]

My life seems to have become a series of pragmatic workarounds.

- Well said.

I have found that I do not even like to sit up in the car, which is OK for now as I have not been driving. Even then cannot lay flat in the passenger seat, so much of a drive is on an incline, watching the world pass by in a blur.

 

[GracieJ]

I didn't know about OI or lying down to feel better from it. Actually, for someone who had been sick for over two decades, I didn't know a lot of things I dealt with were even symptoms of ME/CFS.

What helped me was reading Dr. Sara Myhill's work, and this was in 2009 when she still had many things on the Internet that are not now on her site. In one of her papers, she talks about mitochondrial damage throughout the entire body, and specifically how it affects the heart. If there is mitochondrial damage in heart cells, the heart has to work harder, and theoretically, feeling better lying down might be an indicator of mitochondrial issues, as the heart does not work quite so hard.

This theory fit my observations of myself... I stay horizontal as much as possible every day to stay comfortable and conserve energy for other things. Later, when I read on here that OI existed -- I have mild OI symptoms -- it was another ah, ha! moment. Maybe it is one or the other, maybe it is both... maybe there are yet other factors... any way around, lying down is simply easier on us.

 

[GracieJ]

I find that gently ramping up exercise and using coffee gives me more tolerance.

My life seems to have become a series of pragmatic workarounds.

Caffeine was also mentioned in the papers on mitochondrial function. It turns out that caffeine speeds up the enzyme responsible for ATP production in the cells, so it would explain why it helps so much. I use it daily; couldn't work if I did not. It is such a two-edged sword, as caffeine is also bad for the adrenals.