Concerned and Confused - Epilepsy Message Board

Melanie8765 · 08-12-2006, 10:40 AM

My daughter who is now 18 has had 2 seizures 1 year apart almost to the day. It is really baffling the drs. Her Cat Scans are normal and they can not find any reason at all for the seizures. Last Year they put her on Dilantin but took her off after a few months because there was no activity or reason. All tests came out clear. Now a year later almost to the day she had another grand mal seizure.
If anyone can help or has any helpful information please let me know.

Thank you.

Melanie

wishybear02 · 08-12-2006, 02:11 PM

Dear Melanie I went through the same thing your daughter is going through now and im telling you it almost drove me mad. as until the drs can actual see the generalization of the seizure on sleepstudy or film they almost act like it isnt happening. or like its just not there and they are baffled at something they cant see it took 27+ years for me to be diagnosed with generalised epilepsy went through 48 hour eegs i went through overnight stays i went through different meds i went through it all until i went to thomas jefferson university in philadelphia Pa. (pennsylvania) where the physicians were able to induce a seizure and see it happening before their very eyes. i dont know your financial position so i dont know your case scenario but i tell you its not a picnic having seizures and it is a big frustration not knowing why. i was even accused of drug abuse and it wasnt the case but just letting u know drs do suspect drug abuse with seizures its the first thing they do think. wishy b well hope your daughter does well and i hope u didnt take offense to the last part just letting you in on what most drs think of first. good luck and god bless and im here to talk. wishy

neurowreck · 08-12-2006, 03:49 PM

The vast majority of people with epilepsy do not have a definite cause found. Frustrating, but extremely common.

Travis from MN · 08-12-2006, 11:38 PM

It's odd to hear they removed a person, especially a new diagnosis, from the medication that quickly unless there was a bad reaction to the drug.

Usually they won't let you off the medication treatment at the EARLIEST 2 years later if nothing else has happened. EEG's come back clear, and so on. Most of us must stay on some medication.

Even when I was on medications latter part of highschool, I was having less than one a year for the longest time. A few years later everything changed and mine increased.

--Travis

Melanie8765 · 08-13-2006, 01:20 PM

I want to thank everyone for their help and advice. It has really helped me and my daughter out alot. I have let her read these. They tested her for drugs in the hospital with her permission. Things were fine there. I know that they look to drug use for a reason right off the bat. Since this has happened on friday, she sleeps alot and is still kind of out of it. Is this normal? The first time she had a seizure, It only took one day for her to return to normal and wanting to get outside back to her friends and to a normal life. This time seems to be taking longer.
They took her off the medication because she was acting goofy and tired all the time and falling asleep in school. Also made her kind of sick. They even took her down to the lowest dose that they could and the results were still the same.
This time the neurologist that came to see her said they will try all different types of meds to see which one she can function on but she is going to have to stay on them. He was also concerned that she was off them and that her previous neurologist did not follow her more closely. Since I had not dealt with anything like this before I thought this was normal. Now I know it is not.
Again we appreciate all your help and if there are anything other information you could give us we would be so grateful or any other imput that you might have...

Melanie