i need advice - Epilepsy Message Board

bibigoogles · 02-26-2003, 10:06 AM

hi.. i've had four seizure-like episodes in the last year and a half that last only a few minutes from start to finish, but feel much longer.. everytime the circumstances of the seizure are different [but they feel the same everytime]

Sept 01: drinking alcohol, couldn't see, disoriented, passed out in an elevator
Oct 01: 4pm, completely sober on the subway.. once again, couldn't see, fell to the ground
April 02: after Easter dinner, glass of wine.. couldn't see, sweating, stood up, fell down
last night: sleeping at 2am/got up somehow [can't remember], passed out in the bathtub/ completely dazed

i don't know if it is epilepsy.. i went to a neurologist and cot a PET scan, CT scan, and an EEG.. this was a year ago and the test results all came back normal... my friends that have witnessed the episodes insist that it is a seizure [tonic-clonic] like.. [rigid/eyes open/blinking, shaking etc] and they are usually followed with a lot of confusion and stomach pain.. i usually have to go to the washroom really bad right after..

what can i ask the neurologist to test for? does this sound familiar to anyone? it was very frustrating to do all those tests last year and have the results come back perfectly normal.. "there is nothing wrong with you" .... except for the fact that i got out of bed and herded myself to the washroom last night, and came to in the bathtub extremely dazed and disoriented.. couldn't really see right.. almost gave my boyfriend a heartattack when i managed to stumble back into bed and tell him what happened

everytime i've had a seizure i have been with my boyfriend or friends.. i don't want this to happen when i am walking home from school or something..

how are seizures treated?

any advice would be appreciated.. i am scared

kayakmom · 02-26-2003, 04:39 PM

I would call the nuero again and tell him you are still having these episodes a year later. You can have a normal EEG and CT< MRI etc and still have seizures. I would totally avoid alcohol till you sort this all out since some of the events occurred when drinking. Have someone who has witnessed one go with you when you get a new appointment. Eye witness account is often how epilepsy is discovered since you may not remember well what happened. If this neuro will not see you, go to another one. He can redo EEG, ask for a 24 hour, sleep deprived video EEG for one thing. Sleep deprivation can be a trigger. I would say it could be good to have a drink right before going in for that to see if it triggers one. THe EEG is limited to picking up what the brain waves are doing right at that moment. You might not have seized during the test so it came back normal.
Keep looking for answers, your description does sound a lot like what my son does, and he will have the extreme need to find a bathroom right after one if he maintained continence.
Good luck, I hope you find answers really soon...

tooheys · 02-26-2003, 06:01 PM

Sounds to me that it's very much epilepsy. All my tests came back normal as well even the MRI and I had a seizure while it was being done. Change Drs if you have to, you've got to get it sorted out and on to something to stop them happening.

bibigoogles · 02-26-2003, 06:50 PM

hey guys.. thanks for the bit of advice.. i will make an appointment with my neurologist again.. maybe this time he will find something wrong with me.. i also made a mistake earlier when i said i had gotten a PET scan.. i only had an EEG, CT scan and ECG done..

i've been reading up on treatments of epilespy today and some of the side effects seem pretty severe.. could anyone with experience let me know how much the perscriptions actually affect their daily lives? i'm getting pretty depressed about this..

thanks again

pineapple35 · 02-26-2003, 10:18 PM

Hi if you don't have seizures on a daily basis then another test they can do is called video monitoring eeg. This is where they attatch a ton of electrodes to your head and then they monitor you for a week or even a month to try and "catch" a seizure on the eeg. They can try using triggers. If you know what your triggers are then that will be helpful. Concerning meds, I think one of the biggest side effects of anticonvulsants, correct me if I'm wrong, is sleepiness. This can be hard to deal with. You may feel drained especially at first. But this can go away after you get used to the drugs or you can lower your meds. I hate my meds sometimes but then I remember that it's worth the freedom of being seizure free. I hope you find something that works.