JME at 21

From what i've seen, some children do outgrow them, but often not. As the brain grows, the seizures can change, sometimes get worse, such as your JME. It is a major shame that you were misdiagnosed, unfortunately it happens more than is realized. You shouldn't be afraid day to day about having a Grand-mal seizure. Take precautions. If you didn't sleep well, make sure you aren't the one driving, or make sure someone around you is aware of your seizures, and what to do if they get bad. Just because you have the JME doesn't mean that you're going to have a grandmal seizure. Many people go thru life without one. Being tired, stressed and worried can increase your chance of having seizures, but that doesn't mean to stop living life. Have a back up plan for the "just in case." Your other question was, is it uncommon to have absence, and then stop and have something worse? NO its not uncommon. Your neurologist probably just isn't as familliar with seizures as an epileptologist is. Our doctor said that it is common to stop and restart with something different. But he is right, just make sure you get plenty of sleep, take your meds, and lower your stress level (if that's possible.) Good luck, and remember to breathe.

Hi Marylala, I'm just new to this site. Your post sounds similar to my pattern. I was just finally diagnosed with JME this year at age 27 but have been having seizure problems on and off since I was 8 years old. I started having Grande Mal seizures when I was 8, but the first one went unnoticed because by the time my Mom had come into the room, I was no longer seizing. I had gotten up early to watch cartoons with my cousins and I had leaned over and from what they said I fell off the end of the pull-out couch. I woke up and it was 1 in the afternoon and I was 'mysteriously' in my Mom's bed and I was really confused, which is what happens any time I have one. I was lucky and nothing happened again until I was 9 but it was another Grande Mal and it was with my Dad and he rushed me to the hospital. I also had another at a babysitter's house. I was put on Epival until I was 11 and that seemed to control everything and then I was weaned off the meds to try me without them. I was also an extremely 'clutzy' child and I'm pretty sure my 'staring off' and my unintentional eyerolling that was happening in the morning when I got up was likely seizure activity, but I didn't find out until this year. It's the whole you-can't-really-see-yourself and-what-you're-doing thing, so I have no idea how many times this may have actually happened. I was seemingly okay for about a year and then the Grande Mals came back again and I took 2 more when I was 12. They were all happening in the morning, with the exception of the one with my Dad. I do remember the eyerolling thing happening though while I was on the Epival still. I stayed on meds until I was 16 and then weaned off again to see if I had outgrown them and to get my drivers licence when I was 17. I was lucky and nothing big happened again until I was 22. I was working on a design project that was making me really miserable, living somewhere that was making me really depressed, hadn't slept right for about 4 days in a row, and had a few drinks the night before with my project partner before handing in a component of the project. I woke up the next morning after about 4 hours of sleep and was getting panicky that she hadn't gotten up yet. All I remember was that I bent over to see if the light in her room was on under the crack of her door, and then I was all of a sudden in her car and she was telling me that what I was saying made no sense. I was really confused and started crying because I knew what it was and asked her what happened. She told me she had come out of her room and seen me sitting on the floor and it had look like I was stretching but then when she talked to me I wouldn't answer, and it turned into full on seizing. I was put back on Epival again because it was what I had taken before and then gained 30 lbs and was tired all the time. My neurologist I saw in Toronto suggested that I could try Topamax but we were still under the impression that I only had Grande Mals. I was on Topamax from age 23 to May of this year. I started to have break through seizures this year, only they first manifested as partial complex. There were about 4 of them and 2 Grande Mals. I was also on Clobazam at the time to try and combat the insomnia that was going on with the Topamax. The episodes were more brief but I have no memory of what happened and I would come to confused with mysterious bruises or cuts or bleeding and having no idea what I had done. I could remember bits and snippits of these, like crawling down the hallway of my house trying to get to the bathroom and cutting my knees open on the wood floor, but feeling like I was in a total trance. I didn't even know they were seizures at first, I thought I was sleep-walking and really hurting myself. I now have a great neurologist here in Ottawa that specializes souly in Epilepsy and finally have some concrete answers. He asked me the right questions and we pieced together that I have JME. I just started Keppra about a month ago and am trying to adjust to it and am taking .5 Clonazapam now at night, although I seem to have no problem falling asleep anymore. The insomnia seemed to be a pretty big problem though this time around and the more I couldn't sleep, the more I panicked because lack of sleep seems to be my trigger. I think the biggest problem for me has been that everything that started to happen in March made me face that I couldn't 'hide' my condition anymore. When I would have seizure free stretches, I would almost stop remembering that I had epilepsy at all. I wanted to believe it so much and do everything that everyone else did and 'blend in'. The seizures that broke through made it impossible for me to pretend anymore. It's been a rather soul-searching last couple of months. I'm now the proud owner of a bike. My licence is now gone again, I have no idea how long it will be until I get it back but it doesn't matter so much being in a city with public transportation and I didn't actually have a car yet anyways. I haven't had any alcohol for about 4 months now. I'm also living in panic and uncertainty of how well my current treatment will work and basically crossing my fingers that the seizures don't come back again like they were in March and April. I lived in a state of fear for a while wondering things like: am I going to be walking to the grocery store and then wake up in an ambulance? I'm sorry I've gone on and written a book. :P I'm glad to have had a chance to talk to someone else with JME who was diagnosed later too. I hope everything is going well for you Marylala and cheers! Amy aka Aurora Borealis