Hi--
I I'm a 54 year old female who had adult onset epilepsy about 15 years ago. I've had it fairly under control with Dilantin, 350 mg./day. I had a nocturnal seizure two nights ago, saliva and blood on my pillowcase, but I didn't remember it. Yesterday my tongue kept hurting where I've bitten in, and the involuntary repetitive muscle contractions of my trapezius and some related muscles or nerves have gotten worse and won't stop. Originally these contractions lasted on and off for years, so I'd like to nip them in the bud this time, if possible. I'm in good physical shape, so this would be the time to fix this rather than just let it become a pattern the brain thinks would be normal--now it could possibly last a real long time with these contractions, and I know it wears down the system rather than builds me up/

This time around I can discern this all is affecting my heartbeat and breathing and vision a bit (the vision pressure is better than yesterday), which makes me come here to get some advice.

Previously I stayed away from pain meds. This time I hoped something would work for the continual tingly nerve feeling, but neither aspirin nor Ibuprofen worked for the contractions, only dulling the pain. The tingling and contractions are still there. I'm trying Naproxyn sodium, and later today will try Acetaminaphen.

Thanks for any advice. No insurance, and Doctors can seem to just guess and wait for results.

Truthster1,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears.

I do have epilepsy, and had it since I was ten. My best advice for you is to see an Epileptologist at an Epilepsy Center you can usually find them at big or university hospitals, have your GP refer you to one and they can pinpoint the exact cause of your epilepsy. There the cost is nothing like you would think. Get a calendar and start keeping track of your sz. write down what time it happens along with a description of the sz. Also try taking vitamin B12 1000 mcg. once a day it has reduced my sz. greatly. If the Dr. does an e.e.g. on you again ask them to flash different color strobe lights one at a time this will tell what colors are triggering sz. for you, especially at a theater, just close your eyes and turn your head.

Yes, I have bit my tongue as I was a sleep and one occur. It never has occurred as I was awake. hardly ever have I had one as I was sleeping.

Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene