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Old 01-03-2007, 10:41 AM   #1
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HJT2281 HB User
Angry I cant do this any more.

Im not sure how to go about this so I'll lay it all out there. I had my first seizure when i was four years old. they started as sleep induced grand mal. I didnt have that many of them. at 13 i went to shands and told me that i grew out of them. around age 16 i started having what i called weired head ace's. these continued getting about 2 to 3 a year untill i was around 19 then i had one when i was driving and totaled my car.at this time i decided to go and see a dr about them. come to find out they where seizures. I had I got pregnant at age 20 and my dr. didnt feel good about treating me while being pregnant. at this time my EX-husband made me quit talking my meds. saying that epilepsy was not real just a made up problem. i had about one a month when i was pregnant with my 1st. after i had the baby it went back to about 2 a year. i got divorced. now remarried got pregnant agian at 23 with this one i had at least one seizure a week. while being medicated. i am 25 now. over the last 6 months my seizurs have increaced a great deal. the dr has tried every med. and it either dont work of i have a bad reaction to it. over the last month i have had 8 seizurs that i know of. and at least 5 possible. in my sleep. I dont know any tec. name for of where they are located. i havent payed that much attintion maybe cause ive had them for so long. I have also been dignosed with Chirai Malformation and what the dr explained was like a vericose vein on my brain. i also have cronic miagrans. well none of this really bothered me untill about 4 months ago. the dr is setting me up with shands to discuss surgrey.i am at the point where i would do anything to get rid of this. I am so sick and tired of being sick and tired. my memory is being effected.i cant do this any more. I am 25 years old and my quality of life sucks. I always have a head ace most the time a miagrain. i seem to be mad 99.9% of the time i take it out on my family and dont mean to. when i have a seizure it starts with a tingeling in one hand. travels up my arm. goes to my face mouth and tounge a cank speak or move i droll things dont sound right or look right I cant think or remember when it is staring to go away i get a head ace that is like nothing else cant explain it im very disorented usually untill the next day many times i have several in a row. when i have just one from start to finish last about 1 hour. has anyone else had this or am i just freak. help

 
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Old 01-04-2007, 06:02 AM   #2
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worriedmommyof2 HB User
Re: I cant do this any more.

I really feel you pain I am sorry all I can do is share in your fustion .
I started having grand mal's at the age of 4 by 9 I was having just day dream seizers no meds worked sometimes just making it worse other times just making me sick by 13 they said I out grow them. by about 18 I would space out again and feel horrable but never really thought twice then cause I did not know what was happening and i had a son so I was full of the classic mommy on back burner mode .
By 23 I was I wreaked my car during a something I began calling a brain fart cause I would be doing something total space out come to and not remember what it was I was saying or doing and feel worn out like *&%^ .
The migrans and coffusen still are the worse for me I told every DR I had my medical history but they never thought anything of it till a little over a year ago when I was Pregnent ant the age of 26 , By then I was mad that they where doing so many test on my cause no one seen fit to do so for over 12 years when I would finally carry my butt to the DR. as if being pregnat you are not sleep deprived enoght then having DR. request sleep deprived test on top of it. DR wanted me to start med right away again as I was now more then three months along then they wanted me to stop just incase so I did and then i started having them more and more having a grand mal the day my daughter was born.(in 2006)so it was right backon meds for me but really I am not sure which feels worse sometimes the space out and migrans or the way the meds make me feel but physical and mental the only positive i feelis that on the meds I don't space out I just feel like I have may head up my butt some positve. I am sorry that I cant name ways to make it better really I wish I knew some but I must say and please know that I am not happy you feel fustated but was really nice to see that there is some eles out there knowing there are others out there help I don't feelso crazy now not saying you are.

 
Old 01-04-2007, 07:13 PM   #3
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neurowreck HB User
Re: I cant do this any more.

You aren't a freak.

See how the Shands eval goes, and the suggestions they have. Surgery could make a world of difference. They may also have ideas for different meds that could control some of the migraine pain (pain is a trigger for some of my seizures), and also help with the endocrine changes of pregnancy. It's not in your head (so to speak)....just a hard thing to pin down and treat.

Glad you found this board

 
Old 01-05-2007, 11:16 PM   #4
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HJT2281 HB User
Thumbs up Re: I cant do this any more.

thanks for all the support

 
Old 01-27-2007, 01:58 PM   #5
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Bilbostuff1961 HB User
Re: I cant do this any more.

First of all you are not a freak!!...You have just not been on a winning streak..(look I am a poet)...
Anyway, what you describe sounds like a lot of stress combined with the epilepsy...(stress is not a good thing)..Of course the forgetfulness etc, is normal before and after siezures..the pain of course is not fun.
As far as the anger is concerned, I am guessing this is part of the stress that you seem to be putting on yourself..(or of course the cards you have been dealt)...Sounds crazy, but think happy thoughts...or even laugh at yourself. (I laugh at myself constantly...but I am funny looking and it is easy)..
It is good you got rid of your ex...getting off meds when you have eplipsy is not a good thing. This is something I attempted as a child..(just stopped taking them)...the shock itself to my system caused what was at one time petite mal siezures that happened infrequently to become grand mal seizures that happend frequently...I very much perfered staring off in space to chewing my tounge and banging my head like it was the last coconut on earth that contained moisture)...It took me nearly 15 years after this mistake to finally control my little rides of adventure (AKA siezures)..
See the Dr....and try...yes try to relax...(remember stress can of course bring on more migraines)..Your condition of course does not help, but the stress is like pouring freshly squeezed lemon juice on to a tounge that has been chewed on for an hour...it hurts..(ourch...stop for a second and see the visual on that one)...
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Old 01-28-2007, 10:41 AM   #6
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secureman HB User
Re: I cant do this any more.

Hi
I had my 1st sezuire at 8 I was riding the school bus home walked into the house attemped to climb the stairs to go to my room and started seeing lines like water rippless an my left side became weak my stepmother freaked out then the state troopers we lived down street from the barracks in Cranbury he put thecar an drove me to hospital in heights town they did all tests scared the crap out of and I have been on phenobarbital ever since.I had 2 at work this year this was the 1st for me they put ambulance.What a pain that was.I had to get a doctors note to come back to work.

 
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