Does anyone experience this heavy symptoms while asleep?

[Wanja]

Hey guys,

So since i suspect there is something really bad (Autoimmune Enzephalitis) going on in my brain since i crashed some weeks ago my neurological symptoms escalated and i need advice from people who may had the same experience.

One of the worst symptoms i cant find anything about is when i try or when iam falling asleep:

When i close my eyes, there is no inbetween being awake and asleep. My body directly shuts down. No thought or anything, there is just a mess of memories and associations.
When it started i had a tingling zap in my body when falling asleep, but i got worse over time and completly changed. The zaps came sometimes several times a night and got progessively broader and more intense.

Now when i wake up sometimes its like in a horror movie.
My whole body is numb, i have tingling all over my body and in my brain.
I am really dizzy, vertigo and i cant think anymore at all. Orientation is off and i am confused. Literally, i cant think anymore, its like i am brain dead.
I have like a "doom" feeling in my guts as well, like there is nothing good left in your body.
Its like somebody cut the oxygen or blood flow to my brain.
After waking up feeling this my breating starts going throug the roof.
The whole day is then dominated by heavy derealisation and brainfog.

Also when i try to fall asleep on daytime it happens 100% of the time.
I am so paralysed then i cant move or speak. It relieves after a few minutes but the dizziness, "bad feeling" and brainfog amd derealisation is worse for hours.

Anyone ever experienced this?

 

[nerd]

Its like somebody cut the oxygen or blood flow to my brain.

That's how it feels for me as well. Has felt like this even before it got worse and all. Now, I know that this isn't normal since I experienced a good period when I began the ketogenic diet, but the air hunger and this feeling that you describe came back soon. I used to believe this is normal because it was like this longer than I can remember, but now I know that it can be different. I can think and write this post, hours after standing up, but I still feel disoriented. I couldn't walk or drive right now. In the afternoon or evening, it will be better, but during sleep, it will go back to this. So when I wake up, I used to compare it to a bad hangover feeling. Like you drank too much the last day. I tried amber acid and leucine, but it doesn't do the trick for me in this regard. And I also have word-finding issues as usual, in my native language the same. Can't express myself as I normally would.

 

[barabara]

I think the zaps are what I called "shocks". I believe it's because depletion of energy in the CNS interferes with autonomic functions like breathing and heart rate, and the shocks or zaps are a last-ditch method of keeping you alive.

https://forums.phoenixrising.me/threads/diminished-autonomic-functions-during-pem.84212/

It's hard. I want to do things I enjoy, but I end up draining my energy and crashing later.

It's CNS energy, since even doing difficult stuff on a computer is draining.

I believe bag breathing or putting covers over your head is helpful since it increases blood flow to the brain.

When I do things, especially standing, I get a tense feeling in my head, probably undernourishment. The air rebreathing makes it dissolve.

Zaps, shocks, and tension occur when there's a bad situation. Imagine if a food supply were to go dry. Everyone would be in a panic, and there would be no room for anything but necessities.

It's a very basic problem. Lack of blood.

 

[Wanja]

I think the zaps are what I called "shocks". I believe it's because depletion of energy in the CNS interferes with autonomic functions like breathing and heart rate, and the shocks or zaps are a last-ditch method of keeping you alive.

https://forums.phoenixrising.me/threads/diminished-autonomic-functions-during-pem.84212/

It's hard. I want to do things I enjoy, but I end up draining my energy and crashing later.

It's CNS energy, since even doing difficult stuff on a computer is draining.

I believe bag breathing or putting covers over your head is helpful since it increases blood flow to the brain.

When I do things, especially standing, I get a tense feeling in my head, probably undernourishment. The air rebreathing makes it dissolve.

Zaps, shocks, and tension occur when there's a bad situation. Imagine if a food supply were to go dry. Everyone would be in a panic, and there would be no room for anything but necessities.

It's a very basic problem. Lack of blood.

Wow... Yeah it feels a little bit like that.
Shocks.

I will try the bag breathing and see if that helps... How do you do that? A simple paper bag?

The weird thing is that my energy level got better. I cam walk again and do stuff without complete exhaustion. But my brain is the same.

 

[barabara]

Wow... Yeah it feels a little bit like that.
Shocks.

I will try the bag breathing and see if that helps... How do you do that? A simple paper bag?

The weird thing is that my energy level got better. I cam walk again and do stuff without complete exhaustion. But my brain is the same.

Most people use a paper bag. I use one of those plastic bags used to take fruit at the grocery store. I find it more comfortable.

I inhale, flatten the bag, exhale into it so it's only my breathe, then rebreathe it until I feel discomfort, exhale into it, inhale outside air, exhale into the bag so there's more rebreathed air inside, rebreathe it until discomfort, and I continue the process for a minute or two. When I'm done, I turn it inside out so it dries out.

When I don't have PEM, I can move quickly, and tend to do so, since being in an upright position is a race against time. If I take too long, I end up depleting my mental energy.

At best, the depletion is mostly local. So if I move during depletion, I can suffer from weakness or paralysis because the brain areas responsible for movement shut down.

At worst, it's that global depletion in which I get the shocks, hypersensitivity, and heart rhythm strangeness.

Sleeping during depletion is bad sleep. The brain needs energy in order to sleep well. If it doesn't, there's those emergency survival processes going on.

 

[Wanja]

Most people use a paper bag. I use one of those plastic bags used to take fruit at the grocery store. I find it more comfortable.

I inhale, flatten the bag, exhale into it so it's only my breathe, then rebreathe it until I feel discomfort, exhale into it, inhale outside air, exhale into the bag so there's more rebreathed air inside, rebreathe it until discomfort, and I continue the process for a minute or two. When I'm done, I turn it inside out so it dries out.

When I don't have PEM, I can move quickly, and tend to do so, since being in an upright position is a race against time. If I take too long, I end up depleting my mental energy.

At best, the depletion is mostly local. So if I move during depletion, I can suffer from weakness or paralysis because the brain areas responsible for movement shut down.

At worst, it's that global depletion in which I get the shocks, hypersensitivity, and heart rhythm strangeness.

Sleeping during depletion is bad sleep. The brain needs energy in order to sleep well. If it doesn't, there's those emergency survival processes going on.

Well this makes a lot sense...
Are there any ressources you could link me to read into that?

And isnt there any possible medication to helo with the blood in the brain?

Thanks for the tips and explanation, i will try these out.

 

[barabara]

Well this makes a lot sense...
Are there any ressources you could link me to read into that?

And isnt there any possible medication to helo with the blood in the brain?

Thanks for the tips and explanation, i will try these out.

Hyperventilation triggers seizures in people without epilepsy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6546426/

Low brain blood flow in people with orthostatic intolerance is due to hyperventilation and reversible with rebreathing

https://pubmed.ncbi.nlm.nih.gov/9731612/

Carbon dioxide concentration in the arteries is the most potent regulator of blood flow to the brain.

https://pubmed.ncbi.nlm.nih.gov/31187899/

Some of the things that help with this are already known to help ME/CFS. Thiamine reduces lactate production and increases carbon dioxide production. Salt, which is used here for low blood volume, increases CO2 production. I haven't heard of baking soda (sodium bicarbonate) being used here. It's more effective than salt but should be taken away from meals.

An actual medication is thyroid. Some people with ME/CFS have low blood volume due to low sodium retention, and this is likely to be from low thyroid function. Sometimes, TSH is within normal but not low enough, and sometimes what's normally prescribed for hypothyroidism, T4, isn't converted well into T3.

In my case, thyroid did work at first, but it stopped working, despite anion gap going down and CO2 going up on a blood test. Over a decade of hypothyroidism and a difficult environment caused ME/CFS. The cerebral blood flow issues cause an intolerance to stimulation and thyroid, which would normally be tolerated without a problem. Although I'm hypothyroid and need it, I need to increase dosage slowly while addressing the OI.

T3 by itself works as a PEM inhibitor, which is probably why T3-only is liked among people with ME/CFS. However, PEM isn't the cause of ME/CFS. It's a shutoff signal to prevent oneself or one's brain from doing further damage.

PEM causes T4 to turn into reverse-T3 in the brain. In a situation that causes PEM, like not enough blood reaching the brain and lactate being produced and causing damage to neurons, T3 can be harmful by keeping metabolism high even when it should be dropping. In a normal person, blood flow to the brain increases from brain metabolism, so there is no depletion from things like stimulation and thyroid.

Thus, things that increase blood flow to the brain without increasing its metabolism much are necessary, even if the original cause of ME is low carbon dioxide from low metabolism.