What do You think is your most disabling symptom?
- Thread starter cman89
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GlassHouse
Senior Member
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- 108
Hypersomnolence/ ability to stay conscious. I’ve slept 12-23 hrs a day for 10 years and am barely conscious during my “waking” hours. I’ve failed every stimulant medication. Time goes by so fast because I’m always asleep.
I have severe global hypoperfusion and delta brain waves with my eyes open. Discovered chronic active hhv7 viral infection in my brain, took over antivirals, no help. Found multiple neuronal autoantibodies, several years on IgG, nothing. Cervical instability progressed to actual internal decapitation, emergency fusion surgery. Still nothing.
I have severe global hypoperfusion and delta brain waves with my eyes open. Discovered chronic active hhv7 viral infection in my brain, took over antivirals, no help. Found multiple neuronal autoantibodies, several years on IgG, nothing. Cervical instability progressed to actual internal decapitation, emergency fusion surgery. Still nothing.
linusbert
Senior Member
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in the beginning it was the muscle PEM... cramping of muscles and muscle weekness which forced me to do less and less activity . now its almost ever bedtime.
though new symptoms are popping up... i now get new kinda neurological symptoms like insane head and ear pressure with brain fog and confusion and dizziness and nausea... these episodes are the worst feeling i ever had in my life. making me situational suicidal for that moment. just to somehow make it stop.
last time breaking my leg was a walk in the park against this.
i can tolerate these kind of pain... but this whole brain stuff which makes every part of the body feel bad is too much.
also getting eye vision blurryness and dizzyness over the day now. it feels like hypoglycemia, but it isnt at least not measurable in blood. goes away after eating. (also like my muscle weakness and cramping).
i must really say, the human body is one big piece of garbage. how do these symptoms make any sense for evolution, i dont get it. just kill me at once and not over a course over years and decades. big fail of nature.
if you cannot procreate, go out and hunt (work) just call it quits, whats the point. why does the body decide this is worth sustaining?
probably this wasnt a problem back in the day, people like us just were starving to death or beeing expelled from community and then starving to death. as many of us were fit(more fit) the first decades in life we probably had offspring. that way natural selection never could filter this sickness out.
though new symptoms are popping up... i now get new kinda neurological symptoms like insane head and ear pressure with brain fog and confusion and dizziness and nausea... these episodes are the worst feeling i ever had in my life. making me situational suicidal for that moment. just to somehow make it stop.
last time breaking my leg was a walk in the park against this.
i can tolerate these kind of pain... but this whole brain stuff which makes every part of the body feel bad is too much.
also getting eye vision blurryness and dizzyness over the day now. it feels like hypoglycemia, but it isnt at least not measurable in blood. goes away after eating. (also like my muscle weakness and cramping).
i must really say, the human body is one big piece of garbage. how do these symptoms make any sense for evolution, i dont get it. just kill me at once and not over a course over years and decades. big fail of nature.
if you cannot procreate, go out and hunt (work) just call it quits, whats the point. why does the body decide this is worth sustaining?
probably this wasnt a problem back in the day, people like us just were starving to death or beeing expelled from community and then starving to death. as many of us were fit(more fit) the first decades in life we probably had offspring. that way natural selection never could filter this sickness out.
Last edited:
Dysfunkion
Senior Member
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- 407
The periods of restless insomnia followed relentless fatigue for days so bad that I'm afraid when I lay down I won't be able to wake up are pretty screwed up but I'd say above all my neurological issues. They really effect my social skills like remembering words, my poor memory I need assistance sometimes in digging things out of that I know I know when I see, or how it can cause me to get stuck/blank out mid conversation. It's so bizarre and embarrassing. Started when I was younger and has only gotten worse through my life.
Like linusbert up there said too the head and ear pressure flares (the tinnitus also flares with them like crazy) are terrifying, I'm actually starting to make a little progress with them though as it's not constant high grade "head is going to explode" pressure anymore. That was really bad with my dizziness and messed up vision over the Summer, when that was worse so was the other thing and all of this came after a month of severe digestive bloating issues that evolved into some multi system disaster. It's very rare I feel dizzy anymore but my vision can still get a bit screwy sometimes.
Like linusbert up there said too the head and ear pressure flares (the tinnitus also flares with them like crazy) are terrifying, I'm actually starting to make a little progress with them though as it's not constant high grade "head is going to explode" pressure anymore. That was really bad with my dizziness and messed up vision over the Summer, when that was worse so was the other thing and all of this came after a month of severe digestive bloating issues that evolved into some multi system disaster. It's very rare I feel dizzy anymore but my vision can still get a bit screwy sometimes.
ChookityPop
Senior Member
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- 605
Full body muscle weakness / premature muscle fatigue.
Dysfunkion
Senior Member
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- 407
I forgot to mention the PEM brain inferno symptom, when I'm not in it I don't really get it but when I cognitively exert myself too much it just gets worse and worse. To this day I haven't been able to pinpoint specifically what it is.