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Newly diagnosed
Mon, 02/26/2007 - 18:17Topic: Women With Epilepsy
Hi All!
For several years, my husband and kids thought my "morning jerks" were hilarious. I can't tell you how many times I dropped cereal in my lap during what I now know to be a seizure. Then, last month, when my son woke me up at 3:30 in the morning with a fever, I had a grand mal seizure..2 feet from him. That was terrifying for my family. I went to the hospital, had an abnormal EEG, my husband told my Doctors of my "jerks" and ta da, I'm told I have Juvenile Myoclonic Epilepsy.
I'm now on 1000 mg of Keppra per day, not driving and feeling constantly dizzy. The medication combined with no longer trusting my body has caused some strange feelings. I wonder if the Keppra is necessary since I've only had one grand mal? Do the seizures get worse once you've had a grand mal? Will I be on medication for life? Anybody have advice?
Thanks, and God Bless!
Comments
Re: Re: Newly diagnosed
Submitted by dmacasassy on Mon, 2007-02-26 - 20:54
Emeria,
Thanks for the words of advice! I appreciate hearing from someone who understands!
Re: Newly diagnosed
Submitted by maraj on Tue, 2007-02-27 - 13:32
I have JME too. According to my doc, JME does not go away, so you probably will be on meds for the rest of your life.
I know it is very upsetting to get a diagnosis, but it is better than being undiagnosed. I have never been on Keppra, but if the side effects continue to bother you, talk to your doctor about switching to something else. I was on Depakote for 15 years and my JME was entirely controlled, but just switched to Lamictal for pregnancy purposes. I had some side effects early on with Lamictal, but now it's fine.
Re: Newly diagnosed
Submitted by Emeria on Mon, 2007-02-26 - 20:17
Oh wow! That must have been so scary for your son to witness! First getting an epilepsy diagnosis is very troubling. And you are right, it absolutely has a lot to do with both the meds and just simply not trusting your body anymore. Epilepsy means scary surprises sometimes. I don't feel qualified to say whether or not the seizures get worse after a grand mal. But I can tell you that if and when you have more from now on, you will probably understand them a lot better. It might even seem like you are having more seizures simply because you might now recognize small seizures that maybe previously you dismissed as just odd occurances. For me, after I had my first grand mal, and then learned all about epilepsy, I did start recognizing a lot of things as seizure-related that I hadn't previously. And eventually, before my medication dosage was quite right, I did have another grand mal. Which I thought wouldn't ever happen. So yes, the Keppra probably is a good idea. And adjusting to it is very hard I know. I went through absolutely horrible dizzy periods, and periods of frequent simple partial seizures while I was adjusting to and finding the right dosage of my medication (which is Tegretol XR, 800mg daily). But the good news is that it does get better, you will adjust, and with luck, your seizing will be under control. And with it under control is the only way you'll be driving again. Hang in there, and remember to listen to your doctor. I'm still wondering if I will be on medication for the rest of my life as well, but now 3 years since my diagnosis I am still getting reminders here and there that I'm on meds for a reason. Good luck!