Martial-
First off, Thats AWESOME that you're already feeling better. I'm sure this signifies that perfect health is on the not so distant horizon for you. I'm real happy to hear it, man. And I greatly appreciate all the help, I fancy myself a fairly intelligent person as well and stubborn as hell, tho not always sure if that works in my favor!
In terms of my reduced brain function after PEM, it was just a kick in the face when they happened. The first was after taking a long drive to see a doctor, the next day I woke up and was massively more dissociated and there was a very eerie silence in my brain. I just felt much more spaced out and my memory had declined as well. Just an overwhelming..... nothingness. Second was after a short walk, I don't know how to really describe it but even while i was walking I could feel more "depth" of life fading away, like layers of my being were going down, leaving me with a much greater feeling of emptiness. The third and worst was when I first traveled to NYC to see Dr Enlander. It didn't hit me until about 4 days later but I woke up in the middle of the night extremely revved up; nerve pain, sweating, shaking, loud tinnitus, heart pounding- but at the same time I could just feel parts of my brain going down. I could feel my very ability to feel existence, being, time and ability to process thoughts diminishing. This went on for about 3-4 hours until it began to calm down, however I was left with the deficits. This was the one that really brought me into psychosis because I now have a lot of trouble keeping grasp on the very little reality left that my brain can feel.
I have never recovered from any of these instances. It almost feels like my brain doesn't have the power to access certain parts anymore.
One thing i will mention tho that is interesting is that when this first started for me I had more classic brain fog symptoms- cognitive problems, speech problems, math problems etc.. Then, the first major setback I had (after that long drive), instantaneously almost all of my cognitive deficits went away and got replaced by this lack of presence, dissociation and hollowed feeling. Its like the hypoperfusion just moved to a different part of my brain. That's the only thing I can think of.
The first 6 months or so of this illness it was almost exclusively brain problems but now those have slowed down and the physical symptoms have been increasing- fatigue, muscle weakness, nausea, POTS, OI. To the best of my knowledge I didn't have OI before a couple months ago but I have been told that I may have but just couldn't feel it. Either way, it sucks more than anything in life has ever sucked before. My parents constantly ask me to explain what's going on in my brain to them and the only response I can give them is just "my brain is so, so far gone"
Thanks for all those links, too. In regards to diet I haven't eaten sugar or any flour for the better part of a decade. I also am heavy on the coconut products and ferment my own coconut kefir. I sure hope this can get rid of the Candida and allow my diet to do some good for once. My doc is going to put me on lipid therapy soon to treat the cell membrane damage so I'm hoping that will reap some benefit. Then maybe things will start working correctly again.
So I guess I'm not quite sure- is brain dysfunction due to hypoperfusion from some sort of blood reduction or is it hypometabolism due to mitochondria damage? Or both?