I'm new to this forum, but I've been looking for some place to get some opinions. This is my story. I am 23 yr old dance major in college in IL, and I was totally fine. I'm a very healthy person. Until Jan 2, 2006. I started to get a migraine at the base of my head. And it didn't go away. I had headaches like this 3 years ago, but the doctors in Baton Rouge told me they were tension headaches and it took a solid year for them to go away. I had vertigo w/them. So this time, after 3 days of continuous muscles spasms in my head, vertigo came, too I was w/a friend and she was worried. I vomited once and was very nauseous, and very lethargic for those 3 days. She took me to the doctor and he told me it was basilar migraines and he gave me a shot in the ass and a lot of ibuprofen. I went back a couple days later, same cocktail. Went back a day later, same thing and he referred me to a local neurologist. This guy was very quick, just said it was migraines (2 weeks passed and no relief) so he put me on topamax. Told me to increase 25 mg every week. till I got to 100mg. I'm one that doesn't even normally take otc drugs for regular headaches.
So I followed instructions. Did what I was told. School started back up mid-January. I was very sick for dancing and sat out quite a bit. Teachers very worried about me, but I assured them I was alright. So the day I got to 100mg, I was in modern. She was showing us a combo, and I was holding the back of my head like I always do cuz it hurt. I started hyperventilating out of nowhere. I've never done that before in my life, but I noticed when I got to 75mg that I started doing that for some reason. But before I could stop. This time I couldn't. I watched myself in the mirror till I passed out. HIt the floor like a ton of bricks and scared everyone in the room. They called 911. I was humiliated cuz I was fine afterwards. Got taken to hte ER and was fine, except for the headache. THey found nothing wrong so they send me home. Couple days later, I hyperventilated and passed out on campus again. Went back to the ER. Was fine though and went home. had a neuro appt. and passed out a frien'ds that day so I asked him if the topamax could be causing me to hyperventilate. HE told me no it was my nerves. So I immediately started tapering off and quit seeing him. I passed out 8 times in that 2 weeks.
I was down to 50mg every other day for a week. Meanwhile went to normal doctor at school and he told me to continue tapering off to 50mg every other day. I took one pill on a Sat. so I didn't take one Sun. I was judging a tumbling competition, but was up really early at 5am and was exhausted and stressed cuz our schedule was jam packed all day long w/no breaks. by midmorning, I felt weird. Got a sick feeling. Then was very light headed and got really really freezing cold and was shivering, my whole body. I was staring. Other judges noticed and asked if I was alright and i dind't respond so they tried to move me and as they stood me up, I passed out. As I woke up, my hands contracted, my entire face was twitching like mad, and I was still shaking head to toe. Couldn't lay flat, either cuz my leg muscles also contracted. After 10 min. everything relaxed again and I was groggy. Didn't take any more topamax either. Couple days later, had another "episode" in class at school. Same symptoms, but just didn't pass out this time. No one noticed, but I went immediately to health services and told my doctor what happened and he told me they were seizures. Could be from my migraines, but he referred me to another neurologist.
The next week I went to the neurologist, he put me back on topamax, but at 50mg. I had a couple more seizures that week, but they were very mild compared to the first couple. All I do is stare and zone out and shake a little. Then everything relaxes and sometimes I pass out at the end, sometimes I don't. A couple weeks ago I ended up in the ER again because of a seizure. Same symptoms as the first one while at school working a play. My hands curled up and were stuck for a very long time, I was shaking, out of it, etc. BUt didn't pass out. The ER found nothing wrong and let me go. 3 days later, I had to go back to the ER because I had another seizure in my volleyball class that I wasn't participating in because I was exhausted still from the seizures I had over the weekend. I passed out at the end, too. They let me go again and i went baack to my neurologist the next day. He gave me an EEG the day after that. Dont know results. Last week I started having a small episode every day. Just the staring and shaking, then relaxing. I've been kicked out of all my dance classes after ER trips for a week. And volleyball was the latest to be kicked out of. Got back into them eventually, then just recently got kicked out again because teachers are all scared of me and don't want to deal with me so they sent me to the dean to persuade me to withdraw from class. I opted not to.
I'm on spring break right now and going back to the neurologist next week. In the meantime, the seizures or whatever they are seem to be increasing in frequency! multiple times per day since spring break started. I don't understand what is going on. THe migraines have been pretty hard core, too. I've noticed when I'm exhausted or stressed, it triggers a seizure. Monday I worked out pretty hard but normally would be able to handle it. With everything going on lately, though I guess I coudn't handle it. I was with a friend and as soon as I sat down I started staring and my arms were shaking. She sat w/me till I relaxed. I couldn't get up cuz all my muscles were week and I was like groggy and dumb feeling afterward. She sat down again and I immediately went into another seizure. THey only last about a minute though. Then she had to hold me and help me out. I was really out of it. She took me to her place and i started laughing hysterically, really hard and couldn't stop. Nothing was funny. I just couldn't stop. It was uncontrollable and lasted a good 10-15 min straight. Then I laid on the floor and started to fall asleep w/ibuprofen in my hand for the migraine, too exhuasted to take it.
THen I had another seizure and was shaking again. Then went back to sleep. Did that a couple more times that evening. I kept waking up but was too weak to move. NOticed my toes would twitch and one leg would contract and get really really tight for a couple seconds, then relax. Same thing would happen to an arm and then stop. Then a random limb would start shaking. that happened a lot, too. THen I went back to sleep. The next morning I had another little seizure when I woke up but it was probably 10 seconds. then I was fine. I'm always semiconscious when these happen. Just zoned out and staring, or half asleep if my eyes are shut or whatever. I know it was from totally overdoing it with working out. But I'm not sure why I am having seizures because I've never in my life had them before. I had spinal meningitis when I was a premature baby, but had no lasting effects from it. I don't think my EEG was abnormal because the doctor gave me a note to get back into volleyball last week, though they didn't tell me anything. I think this may have something to do with being on the topamax and want to know if anyone else has had any similar experiences with the drug?? Or I wonder if it could just be like adult onset epilepsy or something. OR just due to the migraines like 2 doctors I've talked to think. I'll find out more next week from my neurologist, but I want to hear anyone's opinion on here!