Newbie, need advise please - Epilepsy Message Board

writer2007 · 12-26-2008, 07:32 PM

Hi

Our daughter has been diagnosed with having non epileptic seizures, however I do believe that she may well have epilepsy, and have made an appointment to see another doctor for a second opinion. She has had 3 seizures, (in 5 years) and is currently back on anti epilepsy medication, one of the seizures occured whilst on the medication.

She is almost 18 and of course wants to do the usual things, go out with her friends for a few drinks, go abroad etc etc, and whilst we can't wrap her up in cotton wool, the idea of her being out for the night or even worse on holiday and having a seizure terrifies us.

Please, I would love to hear from other parents who are in or have been in a similar situation

Thanks

Writer

PS Looking back at all 3 seizures the connections seems to be lack of sleep.

soccerschmee14 · 12-26-2008, 10:57 PM

i know exactly what your daughter is feeling. i have had e since i was 5. i would have the occasional grand mals, once or twice a yr. and then in college everything got a little crazy. i was on tegretol at the time. i would always have a sz while working out. the drs thought this was non epileptic szs (NES) along with my regular diagnosis of E. they sent me for counseling, which i thought was not helpful at all...and in the end i got a 3rd opinion and found out they were epileptic szs. i would suggest a 2nd opinion if that is what your gut is telling you. lack of sleep and stress are triggers for me but now that i have found the right combo of meds i am doing pretty good and about to graduate from college.

btw...has she had an eeg or anything like that

writer2007 · 12-26-2008, 11:43 PM

Hi, thank you so much for replying

She doesn't really see the seizures as a problem (because they are grand mal, she doesn't know they have happened until we tell her afterwards), but it's the restrictions she finds crippling (and she is becoming really down). We have such a close relationship, so if me and her dad suggest "maybe you shouldn't go out tonight", she won't, but when all her friends are going to parties, she gets really depressed, and we find it heart breaking.

She has an amazing job and is very independent, but when it comes to going out for a few drinks with her friends (doctor says she can drink with her meds) and going on holidays, we don't know what to do for the best, do we advise her not to do it, and feel terrible (and see her more depressed) or let her live her life as normal and pray everything is fine?

She had an EEG 5 years ago and they said everything was fine, but I want more test now and am going to push for them.

Thanks again for replying

writer

soccerschmee14 · 12-27-2008, 12:58 AM

i would try not to restrict her that much...but im just a 21 yr old talking. hehe. i go out and do the occasional drinking. drinking doesnt seem to affect me much. but if i know im going to not get much sleep then i will make sure that i can sleep late. maybe you could let her go to the party and then have her sleep late so she wont be at risk for a sz. and yea i think its smart to push for more testing with the recent szs. when i was having lots a little while back i underwent 2 VEEGs to try to resolve everything...no fun but i guess necessary.

Travis from MN · 12-27-2008, 12:16 PM

If you can find an epileptologist over the standard neurologist I'd say try to find one. They are a neurologist with training focused in the field of epilepsy. There are not a lot of them, but I have found they tend to be highly sought after due to their expertise.

About the drinking, you can't make a blanket statement really. YES it increases the risks IN GENERAL, however some of us can tolerate drinking and not have seizures as a result. I would say each person NEEDS TO KNOW if their system can take any or not before they go out in public and drink. Some can't take any!! A large number of the medications have warnings about alcohol on them. So be warned, be educated before putting yourself in danger if you don't know.

I've had seizures since I was 5 (brain tumor was my cause), medicated ever since. I could even drive for a few years before they worsened.

--Travis