Grand Mal seizure questions - New member

Worried Mom,

Yes! I feel for you. It's very scary stuff.

My younger daughter had her 1st Grand Mal out of the blue, on the playground at school, when she was 14 (also no family history of seizures.) Her diagnostic tests were all normal, except that the 24-hr EEG showed some abnormal brain waves - but they couldn't be more specific. She does have a history of bad migraines, and so do I. Since the seizures started, those have really tapered off...I guess the 2 are closely related.

I'm not sure what you mean by WNL?

She was put on Lamictal, and took it without any side-effects, or any more seizures, for 7 years. We then asked her neurologist whether she could try going off of it, and were told that sounded reasonable (after another EEG was normal.) So she did, and felt fine...of course, she couldn't drive during that time....but a few months later, walking across campus, she had another one. She switched neuros and now has, we feel, a much better one. She's also back on Lamictal.

In the last 2 years, she's had 3 more Grand Mals. She's also had many episodes where she'll feel "seizureish," but not lose consciousness, be shakey, and be unable to understand what people are saying; this has happened several times at work (I wonder if this is similar to the mini-episodes your eldest daughter experiences?)

The sun, at a certain angle, is a definite trigger. It still makes her feel out of it, and unconsiously brush her hand over her forehead (no one, not even doctors, understands that one. That happened even before her first seizure.) So she wears expensive polarized sunglasses that her neuro recommended, and that helps some.

The very worst thing for her is too much alcohol, especially mixed with too much caffeine the next day and too little sleep (she has cut WAY down on drinking - thank God. I was really worried there for awhile. She finally got it, knock on wood...I'm not actually sure if she's even had the mini-episodes recently - at least, she hasn't said so.

Two weeks from today, she's going to graduate - Cum Laude! She's always gotten on with her life. It seems the epilepsy (if you have 2 seizures, they officially call it epilepsy) has always worried me more than her. I guess that's a mother's lot :(

Of course you're worried. It's so unpredictable. I really wish your daughter could see a neurologist sooner. Our health care system is so maddening sometimes!! Until then, I hope everything goes well and neither daughter has any more trouble!

Debbie

Hey Acheybody,

Your daughter's symptoms sound exactly like mine did. I had many of those "episodes where she'll feel "seizureish," but not lose consciousness, be shakey, and be unable to understand what people are saying." I also had issues with the sun, and sometimes lights in certain stores would make me feel the same way. What I found out was that my seizures was due to Lyme Disease, that I had undiagnosed for 25 years.. All that time they were treating me for seizures, when I needed treatment for Lyme. Lyme patients with late Lyme have sunlight problems and makes them feel like they are going into seizure. With late lyme, diagnosis is difficult, as many times the tests come out negative. The only lab I know of that gives an accurate lyme test is Igenex.

I'm not saying that your daughter has lyme, but I had the exact same symptoms, of which the doctor couldn't understand why the sun was doing to me what it did.. actually he didn't believe it. Good luck to you and your daughter.

I had peti-mal seizures when I was younger (around the ages of 5-10), they subsided for awhile and I was taken off of medication around 13 or so. Then at 16 I had my first grand-mal seizure, which as anyone with them can tell you, is a very unpleasant experience.

My seizures are very well controlled under medication (Lamotrigine/Lamictal) and I haven't had one in roughly 3 years, and before that I hadn't had one since my first one at 16. I am now 25 if that gives you a point of reference.

- Rainy