Jan4you
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Hello everyone ~! I am used to forums and was on an epilepsy forum in 2000 for MY HUSBAND!! Wanted infor and support to help him.
He died after fighting epilepsy for 46 of his 52 year..painlessly.. in bed. NOT SUDEP. He was toxic..brain shut off.
OK..have a complex medical history. In last year have 5 new diagnoses!!
Go to new neuro (my 5th- for other conditions) because of "getting lost/panicky" driving on familiar street with distortion of time..weak legs.. ran home and guess I fell asleep only to wake up "totally disoriented."
Then the next day had one of my "episodes" following a epidural procedure on my lumbar spine..I go unresponsive for 3 hours..can HEAR..but cannot move..paralyzed. Had these infrequently over last 18 years. No one is sure what that is.. the kidney problem can cause paralysis..autonomic symptoms like getting tachy with BP/HR going up..then cannot MOVE.
I am now 61yo widowed for 3 years. My new diagnoses are: (1)Dysautomonia (autonomic dysfunction=unregulated BP/HR) 2). SICCA syndrome or Sjogren's.. (3) Gitellman's rare kidney disorder where my electrolytes are wasted by kidneys a MAJOR interference with MEDS..then NOW get diagnosed with (4) simple and Complex partials (never TC) AND (5) MS..again !!
Was just placed on generic of Trileptal which my kidney doc had to approve as it affects the sodium levels..he approved it.. only to find out I have about EVERY side effect there is including HIGH BP.. RASH.. DIZZY DIZZY DIZZY..off balance.. severe HEADACHE and my new neuro is out of the Country for death in his family. End up in ER to find out YES my sodium level is LOW. So I am being weaned off Trileptal.
I am not sure what my "simple partials" are.. just not sure. I think they are part of my autonomic signs.. could that be?
Complex partials..yeah.. know I "make mistakes" at work for years now. I totally "miss" what I hear..write things that are wrong with NO memory of doing it.. think they only last a few seconds.
Neuro has to try and convince me I was having seizures with my being lost being Jamais vu I guess???
I am really scared I cannot work with side effects..dread the "next" AE. I DRIVE for a living going from place to place doing hospice social work.
Feeling rather lost..left out..who would think after advocating for years for my husband..warning his doc he could die.. he does..and now I HAVE SEIZURES???
Jan