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sami_1982 Experienced User
December 13th, 2003
Hello everyone Smile am I glad that I found this site to get some answers. I am 21 yr old female from australia and 2 months a ago I had my very first ever grand mal seizure. I had 5 in a row lasting 7-10 minutes each. Lucky my room mate was home to call the ambulance. Later that week I went to see a neurologist and there were no abnormalities on the eeg. The neurologist said there is no way that I have epilepsy, he told me its all in my head but that the eeg did show up with sever stress.I was confused then and sad because for about a month after I still was having these weird feelings of dejavu and sometimes a sinking feeling in my stomach and sometimes my feet would go all tingly like someone was tickling them with a feather all over them then if I was standing that was it. I would fall back and have an episode of full on jerking. Sometimes I can hear what ppl are saying around me but not often and its near the end of the fit. I cant walk right after I am all wobbly and I think I am talking normal but the ppl around me say my speach is slurred I am so tired for about half an hour after then I am aware and more with what is going on. But I never really know what happenes. I went back to my normal g.P and I told him everything because I had started getting a weird feeling in the front of my head and then I would feel like I was sinking and then all I could do is stare and then my eyes would flutter and I would see weird squiggles and dotts in my eyes. Sometime I know this is happening and other times I have no idea it doesnt matter what I am doing I just freeze and I cant do anything but wait for it to pass. I try not to freak out when these things happen now. I just let it take its course and then I am so thankful its over. No one in my family has epilepsy but they say that I always did a weird starey thing when I was little. My doctors now are saying I deffinatly have epilepsy and I am also photosensitive I cant handle camera flash or flickering lights or sunlight. I am on tegretol at the moment but its not working. So I have to go into hospital soon because they say what I have is a rare for of epilepsy. Please if anyone can help me from feeling alone please help me understand they say that all the tests can come back normal but that doesnt mean that you arenot epileptic because there has to be a reason right. I think my problem was the stress.
Thankyou sam Confused
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kitkatbar5000
replied January 7th, 2004
Sam
Dear sam,
what will probably help is if you get yourself involved with yoga, or consider taking up acupuncture. All you have to do is find a way to relieve your stress. Stress is a main cause of seizures.Best of luck.
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KHarp
replied January 10th, 2004
Sam, My Daughter Was Just Diagnosed
Sam so sorry to hear about your health and feeling of confusion. My daughter was hit by a drunk driver 15 months ago and just had her first grand maul about 3 weeks ago. They put her on lamnictol and so far no more seizures. She had an eeg but we are still waiting for results. Her doc diagnosed her with epilepsy with just one seizure, I don't know if it is because of the seveere brain injury she got from being ran over, that they came to the conclusion that it was epilepsy. She said the only thing she remembers was that when she got up that morning and went to the bathroom her eyes were really blood shot. Whenit was over she was very confused and di not want to go in ambulance. She also was very tired. I really hope they find a med that works for you soon. God bless you dear !!!
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sami_1982
replied January 11th, 2004
Experienced User
Kharp
Hello & thankyou so much for your reply.
I am on tegretol its kinda starting to work thank god. I am having my doseage doubled every month now after blood tests. I am so sorry to hear about your daughter. That must have been an awful thing to happen to her how frightening and for you as her parent to see her like that. I hope she is fighting fit again. I had a head injury when I was little. I was up about 5ft (165cm) high on an old excersise bike I had hoisted up on bricks. I sat on it and I was riding it in the air it was really cool I was 8 yrs old. My dad scared me and I can laugh about it now and I fell and cracked my head on a metal square post.The next thing I remember is my dad getting a good towel off the line wrapping it round my head me screaming because of the blood. Then the next thing I was getting stitches in my head. Do you know what kind of epilepsy your daughter has? I have the temporal lobe kind.Its very weird. Sometimes during a fit I think I am talking yelling to the others in the house to come help me but they are already helping me on to my side or away from a hard object. They say I never say a word. Now that I am on tegretol I get weird auras. But atleast on medication I get a longer warning that something will happen. I also feel like I was suposed to just have a seizure but the medication fixed it or something like that its really hard to explain. I also have alot more petit mal seizures and the doctors say that is good because the meds change the seiz's to smaller then to non existant and then I can have a job again.
Keep in touch kharp. Let me know how your daughter is doing.
Take care and
seeya sami
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jamal
replied January 13th, 2004
Experienced User
Hi Guys,
My name is jamie i'm 44 ihad a blow to the head from a car accident in 77 and spinal menigtis when I was 6 months old. Also a bad case of measles. The docs. Say it could be from any of those. They can't pin point it. All I can remeber is after having the car acc. In 77 the auras started to come frequently for the first 10 years then they came more and more for the next 10 years ( 1 every 2 months). I had know idea what was happening. They had been coming all the time, for a year,( and alot of stress was in my life) finally in march of 98 I had a aura and it went into a grand mal. I tried meds for 4 years and 4 neuros. Eneded up at u.C. Davis and brain surgery in june of 2002. All the docs. Told me b.S. The whole time I thought they were crazy. But when I lost my job and could'nt drive anymore. I decided to go for it. They told me my chances were 40 to 60 % that I would be seizure free. And the flip side I would still have them. Well I still have them. But not as bad, only 6 gran mals in 1 year and 8 months. And sttill petit mals. So since I been on keppra with my good old topamax of 4 years I have'nt had a big one yet. So there is still hope of driving!!!!!!!!!!!!!!!!! I'm sorry to here about your loved ones you guys hang in there. And god bless. Jamie
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hucklemaberryfinn13
replied January 20th, 2004
Petite And Grand Mal Seizures
Sam, I understand almost exactly what you are going through. I'm 18 years old and just over 3 years ago I started experiencing these weird, I guess you would say episodes. Sometimes I would have several a day and it happened a lot when I was in class. I was diagnosed with panic disorder and they told me there was nothing they could do. I felt exactly how you described....Dejavu feeling, you can hear what people are saying but you just sit there and stare. I would stop breathing and it would be like a dream in the middle of the day not lasting more then a minute. I would always see this singing toaster. Odd I know. Anyways, this went on for over 6 months until the day before I turned 16. I woke up with a massive migrane going from my nose to the base of my neck. I took some asprine and went to school. I ended up coming home early, slept, woke up and went to go to the bathroom. Thats when my mom found me having a grandmal seizure. I went on tegretol, but it made me really wired then I switched to carbamazapine. Much better for me. I spent the next two days sleeping and visiting the doctors. They could find nothing wrong with my eeg or my mri. We don't know why I had it, but it turns out those previous little episodes were petite mal seizures, little versions. I've been off my meds now for 6 months and havent had a seizure since that first grand mal. I don't know what to tell you other then what you are experiencing are petite mal seizures like I had, but there are others like tingling of extremities, my thumb used to go kinda tingly/numb for a few seconds. Anyways, I hope this helps.
jessica
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Midnight
replied January 28th, 2004
Oh my gosh, I just got on this bb and I can't believe that people really know what I am going through. At first I just thought it was all in my head. Sometimes I wonder if I can control it but I can't. I get all of the same type of symptoms you all do. I feel more at ease knowing that if it is in fact happening to others (not that I wish this upon anyone because I don't), with the same symptoms that I really am not a freak. Even though I feel like it when I have one and people see me. I get very embarrassed and want to crawl in a hole. Embarassed

i put a post up maybe somebody can help me understand: http://ehealthforum.Com/health/topic7558.H tml

sometimes I know when they are coming but I can't stop them. Anybody else go through that? Loosing ability to speak or motor skills for a little bit after or in between seizures.

Thank you all for posting your stories because I feel a little more "normal" now.
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Midnight
replied January 29th, 2004
Does anybody else have a funny feeling in there head like your brain is in a vice...Doesn't exactly hurt but feels like it is being squeeze and my brain sometimes feels kind of numb...Don't know how to explain it. Do you understand what I am saying or am I just a freak? Confused
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sami_1982
replied April 23rd, 2004
Experienced User
Dear Midnight
Hello.
Motor skills, well yeah you and I sound the same. I get scared when that happens. Like one night I kept sitting down and standing up I did this 10 times in a row I couldnt stop. Picking at clothing rapidly and reall fast. Then I started to mumble in the exact same way. I was totally aware and it sounded so funny. Then the scared feeling came over me. Like someone had covered me in a black sheet and I couldnt see and I was scared and crying because I couldnt brethe. There was flashing lights of lightning flashing through my eyes I was so frightened. Then I got used to it. Then I stoped fighting it I couldnt stop it. It was no longer funny. I no longer new what was happening. 1 hr later that seizure stoped. I was in a hospital bed then. I had my first grand mal.
And now when those motor things begin to happen I freak.
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