TrixieStix
Senior Member
- Messages
- 539
One year ago this month I experienced a severe 2 month long episode of PEM but with pronounced neurological symptoms as well. After this episode calmed down I was left in a much worse state in terms of ME/CFS severity & much decreased PEM threshold. The neuro symptoms I experienced during this episode were....
- wokeup with pronounced vision problems in which what I was seeing was not synched up with my movements thru space. Extremely disorienting. I also had severe unilateral orbital eye pain & much increased light sensitivity in the same eye. As well as onset of "visual snow". When I tried to wear a patch over my eye the visual snow would within a few minutes overtake the vision of my uncovered eye & obscure my sight. I also had uncontrollable twitching of the muscles around the eye.
- When I would close my eyes I would get an overwhelming and very unpleasant sensation that my "head/brain" was violently bouncing up and down (like it was a basketball being dribbled). It made it impossible to fall asleep and I would lay for hours waiting for it to die down enough or me to become exhausted enough to finally be able to fall asleep. It was miserable. (It still happens now from time to time but the "bouncing" is much less violent)
-At the same time as the vision/eye symptoms began I began having uncontrolled pronounced jerking of my left leg, arm, and head usually in unison. (not twitching)
- A week into it I had a 22 hr long episode of unilateral facial palsy affecting only the bottom half of of the left side of my face.
- Tinnitus and Ear Fullness
- lots of paresthesias on my face and scalp. (one standout symptom is the sensation of ice cold water running down the back of my head) Also random episodes of painful burning sensation in areas of the right side of my face. (since then I have had a permanent Dysethesia in the right side of my face elicted by any touch)
- I was having a lot of problems with speech in terms of finding words, saying a wrong random word instead of the word I intended to say. Also mixing sentences up by saying last words of the sentence in middle or beginning of the sentence. I also had a strange one time thing happen where I went to respond in conversation with a friend and all I could get out were the first couple syllables of the first word and had this bizarre feeling of being physically unable to speak. A feeling of surrealness accompanied it as well. I waited a few minutes and it passed and I was able to speak normally again. This same period of time that evening I was also having marked difficulties with my balance when walking that I yet to experience again in the same way.
NOT DONE YET....
- wokeup with pronounced vision problems in which what I was seeing was not synched up with my movements thru space. Extremely disorienting. I also had severe unilateral orbital eye pain & much increased light sensitivity in the same eye. As well as onset of "visual snow". When I tried to wear a patch over my eye the visual snow would within a few minutes overtake the vision of my uncovered eye & obscure my sight. I also had uncontrollable twitching of the muscles around the eye.
- When I would close my eyes I would get an overwhelming and very unpleasant sensation that my "head/brain" was violently bouncing up and down (like it was a basketball being dribbled). It made it impossible to fall asleep and I would lay for hours waiting for it to die down enough or me to become exhausted enough to finally be able to fall asleep. It was miserable. (It still happens now from time to time but the "bouncing" is much less violent)
-At the same time as the vision/eye symptoms began I began having uncontrolled pronounced jerking of my left leg, arm, and head usually in unison. (not twitching)
- A week into it I had a 22 hr long episode of unilateral facial palsy affecting only the bottom half of of the left side of my face.
- Tinnitus and Ear Fullness
- lots of paresthesias on my face and scalp. (one standout symptom is the sensation of ice cold water running down the back of my head) Also random episodes of painful burning sensation in areas of the right side of my face. (since then I have had a permanent Dysethesia in the right side of my face elicted by any touch)
- I was having a lot of problems with speech in terms of finding words, saying a wrong random word instead of the word I intended to say. Also mixing sentences up by saying last words of the sentence in middle or beginning of the sentence. I also had a strange one time thing happen where I went to respond in conversation with a friend and all I could get out were the first couple syllables of the first word and had this bizarre feeling of being physically unable to speak. A feeling of surrealness accompanied it as well. I waited a few minutes and it passed and I was able to speak normally again. This same period of time that evening I was also having marked difficulties with my balance when walking that I yet to experience again in the same way.
NOT DONE YET....
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