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lpate (@lpate)

Searching for a diagnosis post epilepsy

Epilepsy & Seizures | Last Active: Aug 22, 2020 | Replies (14)

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@jakedduck1

@Ipate
You made the following comment on your first post
“After seeing specialists and a normal EEG, I was taken off my meds which were causing me even more issues.”
I’m curious what symptoms became worse were they the headache nausea vomiting , abdominal pain, jerks or did you have new symptoms?
Jake

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Replies to "@Ipate You made the following comment on your first post “After seeing specialists and a normal..."

Prior to anti convulsant meds, my biggest complaint was the headaches. Nothing I took (NSAIDS, Tylenol, triptans, gabapentin) worked at all. My neurologist was most concerned about the spells of passing out and what we thought was seizing and put me on lamictal. The headaches became unbearable once on it. He then switched me to Keppra in which I had the same issue and then to Zonisamide which was ultimately the worst yet. In addition to the debilitating headaches, I had severe ongoing abdominal pain, slept for hours at end, and was so irritable to where I did not feel like myself at all. I felt like I was better prior to starting the meds. I questioned the diagnosis and felt it was time for a 2nd opinion and saw an epilepsy specialist. She agreed that the diagnosis of epilepsy seemed questionable. I then had a sleep deprived EEG which proved normal. After much thought and contemplating with the dr, I withdrew from my meds (which was Zonisamide at the time). For a bit of time after, I felt like a new person and actually like myself again. However, it seems as if the problems arose again last summer and have progressively gotten worse. I still have headaches, but not to the degree as on seizure meds and abdominal pain at times. My biggest problem now is the nausea/vomiting multiple times a day and frequent syncope. I can barely walk outside without almost passing out. Just yesterday, I was pumping gas and nearly fainted in the parking lot. I can’t eat without puking. I have additionally experienced GI issues including diarrhea. It seems as if my symptoms are so wide-ranged that doctors don’t know what direction to point me in.

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