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Can anyone relate?

Sun, 07/20/2014 - 16:30

Ok, so here is my story.  I am 30 years old and my seizures started 3 months ago.  A little backstory....I lost 125 lbs in 2013 and had an athletes body which resulted in being without a period for 11 months.  I had 2 grand-mal seizures (first seizures ever) in April 2014 that were 29 hours apart. CT, MRI, and EEG that was done 2 weeks later were all clear.   I was put on topamax and from April 12-May 12 I couldn't really work out at all because of the horrible med side effects, which induced my first period in nearly a year.  The week before this period, I started having what my docs and I think are complex partial seizures ( forehead feels tight and face/head tingle, flush faced, semi-consious, right side facial and body convulsions, then I go pale and flush again before it's over). I did a video EEG (not any where near my period) and it showed nothing and I experience absolutely no symptoms/seizures.  Had 2 different epitologist in the span of my stay say two different things.  One doc said I had psychogenic seizures.  The another doctor came in the next day and said that he believed that the grand mal seizures were epileptic but there was a 50/50 chance the other seizure were complex partial seizures.  The second doctor put me on Keppra 1000 mg a day.  They referred me to a psychologist to rule out the psychogenic seizures.  The psychologist says that my symptoms seem more epileptic in nature; so, I go back to him in August just to check in and then he is going to send me back to neurologist to up my meds and hopefully get rid of my remaining symptoms.  Data that I have collected in the past couple of months on my current dose of keppra is that my symptoms occur with ovulation and the couple of days before my period and week during my period.  My symptoms include more sensitivity to lights (flickering through the trees, extended use of computer), being nauseated, general odd feelings, tingling in my face and head, and dizziness.  For example, I was riding home in the car (not allowed to drive) and attempting to read aloud on the kindle Fire to my kids.  I started getting nauseated, dizzy, feeling odd and off, tingling in my face....then I started yawning excessively.  Felt like the before and after of a complex partial seizure without the usual right side convulsions I usually get (right eye/face twitching and right arm and shoulder).  I am completely baffled by epilepsy. If any women can relate to these types of symptoms, it would be so wonderful to hear your experiences.  I start to feel like I am losing my mind. Just want to get back to some sense of normalcy and find some kind of understanding what in the world is going on inside my head.

Comments

Welcome to the club While I

Submitted by just_joe on Mon, 2014-07-21 - 16:24
Welcome to the club While I am not female I do know that there are many women who have seizures before during or right after their period.  Some of the things you posted are seizures to many people. Now since yo uhaven't had seizures very long you need to understand that each persons seizure is diferent ot themselves. SOme of your post can be partial seizures and can lean to complex partial seizures. The light changing can lead to photosensativity which can cause seizures with some people. Like some people can't go into a room with a disco ball. Some can't play video games. Now if you lose conciousness then those seizures could have been grand mal seizures.  I did a video EEG (not any where near my period) and it showed nothing and I experience absolutely no symptoms/seizures.  The another doctor came in the next day and said that he believed that the grand mal seizures were epileptic but there was a 50/50 chance the other seizure were complex partial seizures. The second doctor put me on Keppra 1000 mg a day.  Data that I have collected in the past couple of months on my current dose of keppra is that my symptoms occur with ovulation and the couple of days before my period and week during my period.     A sense of normalicy??? What is normal?   I hope this helps and you do get your meds adjusted and get seizure free Joe 

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