Help!! - Epilepsy Message Board

The Prodigy · 07-13-2004, 08:43 PM

Ok, Here's the story. I'm 24 years old and I've had temporal lobe epilepsy since I was 5. About a month ago I took an ephedra free energy pill (similar to Stacker 2 or 3) and I took the pill too soon after taking my evening dose of Tegretol 200mg and since then I have had auras almost every day. I went and saw my doctor and took a blood test which revealed that my Tegretol level was a bit low so he suggested I upped the dosage to 3 doses a day, which I did and it's almost been a week since I started taking 3 a day. Well the auras had slowed down and things were starting to get back to normal but tonight I suddenly started feeling an aura and it has lasted a while now. So my questions are; Does anybody have a clue what's happening? I thought it was the effects of my Tegretol interacting with the Caffeine, Kola Nut, and Ginseng in the energy pill but I think that should have worn off by now? My other question is: What are some things a person can do while they are having an aura to help it or make it go away? I can't seem to sit or lie still. Any suggestions anybody has will be greatly appreciated. Thanks for reading. Take care.............

tkdmom96 · 07-13-2004, 09:34 PM

Hi and welcome to the boards!

Our daughter has temporal lobe E and has had since she was 9 months old and is now 16. In fact she just had surgery to remove the area where the seizures are coming from. She has Complex Partial and auras (Simple Partial) seizures.

Katie would have 0-7 auras a day and averaged 50-70 per month. How long have you been on Tegretol? Katie took it for 12 years and it just stopped working for her. Tegretol can do that. Have you NEVER had an aura before? Is this something TOTALLY new? If so, it could be coincidence that the auras started. Your body may need a different med or another med along with the Tegretol.

Had you used the energy pills before? Or was this something new? Some meds you need to be very careful with as far as interactions go. We never gave Katie anything that had any funky herbs in it. Especially since they are not regulate (FDA) much at all.

As far as getting through an aura, you need to try to lay down and relax in a quiet place. Work on DEEP breathing exercises. 10 seconds in and 5-10 seconds out. Really concentrate. Maybe try some music as well. RELAXING music. Many times Katie was able to head off an aura by the breathing.

Good luck and send any other questions if you need to,
Vicki

The Prodigy · 07-13-2004, 10:31 PM

Hey! Thinks for replying. I really appreciate your help. I've been taking Tegretol since I was 5 years old, that's when I was diagnosed and from then until I was about 17 or 18 I took 2 and 3 doses of Tegretol 100mg chewables. Then I started taking Tegretol 200mg twice a day but I felt they were ruining my appetite so like an idiot I reduced the dosage to once a day at bedtime and since my last seizure I had been taking 2 a day until last week when I started taking 3 a day. Throughout my life I've had about 2 or 3 seizures a year but I think that's mainly because I wasn't always taking as much Tegretol as I should have been. I never had auras except for right before a seizure and the occasional false alarm but they didn't happen that often and they went away pretty quickly. Up until my last couple of seizures I always had them shortly after waking up. I've taken energy pills before but never so close to my Tegretol. Most of the time I took energy pills where in the morning when I was still drowsy. The strange thing about these auras are they affect my vision. My eyes hurt and I can see a few dots hear and there and there seems to be a glare everywhere. I think this is because I spend so much time in front of my TV and computer. Another thing that bothers me is when I do have a seizure my head just turns to the left and I can't control it and it just continues to turn until I pass out then I convulse and bite my tongue. So when my head starts to turn I pass out and when I regain consciousness the seizure is over and I'm left with a headache and a sore tongue. So when I have these auras it's almost like I can feel my neck getting ready to start turning and it makes everything worse because I start getting REALLY nervous. I'm starting to think maybe it's panic attacks instead of auras because I've never had auras so often until now. I'm just not sure what's going on I can only hope that since I've upped the dosage I'll get back to normal soon enough because things just don't feel the same. Any ideas?

The Prodigy · 07-15-2004, 09:12 PM

Any suggestions tkdmom96??

tkdmom96 · 07-15-2004, 09:31 PM

Hey Prodigy,

I've been trying to post a response, but I'm having trouble with my computer. I think it's the DSL service. It seems to be cutting in and out on me. Give me about 20 minutes or so...and I'll do my best! I'm going to restart my computer.

Vicki