Hello. A question please. Did you ever notice:
*The more brain exhaustion you feel, the more noticeable to others (or yourself) your sluggish pupils become? *
I ask, as this might correlate as well with the severely affected. (E.g the more severe you are, the more exhaustion the suffer usually reports at rest, or after activity).
Keeping on the eye pupil topic, I've fallen down the stairs before when I followed (a healthy person) down a staircase with low light and literally missed the stairs and fractured my leg. I screamed in pain at the time, but now I can laugh at it in a way, as it just shows my pupils didn't open up in time to 'see' where I was going.
With regards to 'brain exhaustion' worsening pupil reflex responses....
I find that by the end of a day, then it would be noticed by a doctor if they looked (It was once by chance as I had a late appointment in the hospital and as a doctor turned the light out he said to me ''do you know you have sluggish pupils'') I went home and then tried to replicate this during the day and couldn't, until I saw it was
worsened by brain exhaustion. (At the start of a day, it wasn't as noticable or maybe as in the day it's not dark?!). You could argue that a part of the brain exhaustion in ME, is simply central nervous system dysfunction worsening, e.g. Dysautonomia.
Either way, it makes me wonder if we deplete our neurotransmitters simply by being 'awake'? Hence we get PEM or relapse from physical and mental exertion. I believe testing for neurotransmitters in blood or urine is not very reliable as reflecting brain levels, so I doubt we could do this as a reliable marker in PWME to see if they are low?
Also, if I lay in dark room at night (not totally dark as all I can see is 'stars' (tiny flashing bits in my vision) and it freaks me out) , the more exhausted my brain is (e.g. using this form to type a message that sometimes takes hours) doesn't just induce vertigo and other neuro symptoms, but when I open my eyes from closed I see a momentary flash of white light. Imagine a small circle, then expanding into a circle with a hole in it, then dispersing. I think the slowest I've counted it, is 0.5 second. From eyes closed to eyes opened, (the white hoop of light I get in the dark at night after brain usage is maxed out on an especially bad day).
Have you ever experiened this or heard of it maybe? I think the flash of light is probably my pupils not reacting at the correct speed, so for a split second I cant' see the image infront of me (when opening eyes, the 'image' infront of me is obscured by a 'flash' of white light that expands open too slowly, like a camera iris - then I can see the room fully ). This happens in a split second, but it's chronic, just varies in severity.
I've noticed this is much more pronounced after extensive 'thinking'. Until I became severe, I never had this.
Do you think it could be 'filmed' for research? I was thinking of a night vision camera, but don't know if this would pick up delayed pupil response (literally on camera) unless it's in slow motion? and perhaps that flash of light I see, is something else my brain simply perceives and cannot be 'proven'. Either way, I thought I'd share it. No doubt you'll all think I'm more loopy than you do already.
I'd love to know if this phenomena is just me or is in other sufferers, or maybe really is associated to 'severe' ME, or 'just' autonomic dysfunction. Thanks.