Hello, I'm new here...

[sniegs]

Hi, everyone. I'm a 23-year-old college student living with epilepsy.

My history of seizure activity dates back to 1995, if not earlier. I had a few auras back then - mostly triggered by video games or TV. When my mother (who also has epilepsy) and I spoke with my pediatrician about them, he insisted that they were more likely indicative of migraines and that I should not worry about them.

In June of 1996, I had my first grand mal seizure. I was at a friend's house on a Saturday morning, and we were sitting on her living room couch watching TV. I began feeling "strange," then suddenly nauseous, but before I could get off the couch and run for the bathroom I apparently went into a seizure ... and the next thing I knew I was waking up in the ER, very confused.

I was put on Dilantin after that seizure, and remained seizure-free until October 1998, when I had a complex partial seizure at home. My mother saw me as I was coming out of it, became alarmed, and took me to the hospital.

I had a couple more complex partial seizures over the next year. My doctor was in the process of switching me to Tegretol when (I guess it was just a matter of time...) a major seizure came at a very inopportune time. When at a school dance during my sophomore year of high school, I had a complex partial seizure with secondary generalization. This was triggered by a strobe light, and the school nurse later told me that, from then on, there would be no more strobe lights at their dances.

Fast-forward a couple of years. I was accepted into my first choice college and moved 400 miles away.

I was seizure-free for a few years into college, but in 2004 I began having strange feelings again. Feelings of lightheadedness and double vision. At first I assumed it was the Tegretol (over those years I was at the 800-1000mg range). Gradually I began experiencing auras again, and some simple partial seizures, especially around my periods.

I had a complex partial seizure while taking a summer class last July. It was embarrassing, because when I came out of it my shirt was partially unbuttoned and everyone was staring at me. Only one of my classmates would even talk to me after that episode.

Since the beginning of 2007, even between seizures, I have not felt right. I have considerable anxiety issues related to the epilepsy as well.

Recently, I left my neurologist in search of a better one because he just wasn't listening to me. I would explain my symptoms and everything to him, and he didn't want to change anything about my regimen. If anything, he wanted to increase my Tegretol dosage - he suggested that I take 1600mg daily, but considering the side effects I was feeling at 1000mg (and the fact that I have a small body), I was very skeptical.

My new neurologist is much better, and he actually explains things to me. He says that my symptoms are consistent with temporal lobe epilepsy. He suggested an MRI (since it's been a while) and a week-long or two-week-long video EEG/monitoring session. This will probably happen sometime in May, after I have graduated from college and I can actually set aside two weeks for this.


Sometimes life can really seem overwhelming. I never know when I am about to have a seizure or aura, and it has gotten to the point where I am reluctant to go out in public very much anymore because of the unpredictability.

But in all this, I am very thankful for my boyfriend of more than two years. He has been so caring, understanding and supportive, even though he may not totally understand everything I'm going through.

Anyway, thank you for listening, and for offering a place where I can feel safe discussing this information.

[brain]

Sniegs!

Welcome to CWE! And first of all you
are making the right moves in having
a new Neurologist and moving forward
in having a video EEG done for seizures can
change (better or worse); and this way
your neurologist will know what and where
it's all coming from and will be able to
treat you better. However, feel free to
browse around, and even NEUROFEED-
BACK is even looked upon as an alter-
native method in treating Epilepsy too!

Make yourself a home here, and sorry
that you're having to undergo complex partial's and
simple partial's!

[RobinN]

Welcome Sniegs - thanks for sharing your story. You are among friends here.
My daughter has seizures, I had 30 yrs of migraines. Rebecca's seizures are classic tonic clonic, and she has anywhere from 0 - 6 a month (more on the upperside right now).

Diet plays a huge part in her pattern, as do her hormones. So you might keep a journal to see what your triggers are. Also check out some of the nutritional ideas that are suggested and see if there are some that might be helpful.

Your neurologist sounds like a gem. You are lucky to have such a long video EEG. Rebecca's was less than 24 hrs, and it never was suggested to do it during the trigger times of the month. Good call don't you think?

Rebecca is in 10th grade and keeps putting herself back into the line of fire at HS. It certainly isn't easy when people lack knowledge, good sense,and compassion. Glad you have a boyfriend you can count on, and I am glad that you joined us.

[Bernard]

Hi sniegs, welcome to the forum.

It's no fun when your seizure pattern starts changing. We've been on that rollercoaster too many times.

Make yourself at home here.

[super]

Hi Sniegs

You should be congratulated upon graduation from College given the circumstances, be proud of yourself and your achievements.

Reaction to those witnessing a seizure can vary, try not to be hurt by negative behaviour by others your friends probably no different from the norm. They'll get over it.

Keep well and good to hear your story.

Super

[tag415]

Welcome Sniegs,
I'am new here too and finding out this a great place to be. one thing I do want to tell you to look into is the medication you are on.My son and I both have seizures,he is how topmax and trileptal.I have been on tegretol for about 15years.It has been agreat med. for me and has kept me seizure free.My son started to see a specialist and into talking he asked what I take,I told him.He said it is a great med but if you don't take supplements with that you can lose musle mass.I was dumb founded that in all the years of taking this I never was told this.He told me to start taking calcium 600 and a thru z vitamin daily and lift weights.First of all I told him a single mother of 2 and running a business I have no time to go workout.Don't think he likes the answer so we gradually got me off the tegretol and started zonisamide.I'am not telling you to change just maybe to ask you doctor about the muscle thing.I wish you the best of everthing and good luck.
Take care
Tricia

[BuckeyeFan]

I really hope you receive the info and support that I have received from this sight. It is informative, yet comforting to visit.

Best of Luck!!

[skillefer]

Hi sniegs! Welcome to the site. Everyone here tends to be very supportive, so feel free to ask any questions, vent, whatever. Congratulations on graduating college soon. And congratulations on finding a more open minded neurologist.