I am 21 and I was diagnosed 9 years ago when I was 12.
I had started having seizures maybe a year or so before I was diagnosed.I would usually have small ones in the mornings while I was sleeping and I would wake up and be all disoriented but my mom just figured I was tired.When I was 12 I had 2 at school and they found me wandering the halls and I didn't know who I was or how old I was. They called my mom right away and they took me to the ER. The doctor I had thought I had overdosed on Benadryl and decided to teach me a lesson by giving me a spinal tap (I don't know if you've ever had a spinal tap but they're very painful).Turns out I hadn't overdosed.
At the time I was living in Nashville,TN so in order to be diagnosed they sent me to Vanderbilt University Hospital where I saw the head of pediatric neurology, Dr.Gerald Fenichel. I had an MRI and an EEG and right when he looked at the results he diagnosed me. It turns out that mine is a genetic disorder that runs in my family. I don't know if yours is the same but it might be.
Since I've had seizures some doctors have told me that muscle twitches are pretty normal, which I get quite a bit. I really hate how sometimes when I'm talking to people I sometimes have trouble trying to find the words I want to use. It's like I can't think.
I was never given an option of whether or not to go on medication. I needed it. Without it I was no doubt gonna have another seizure.It's probably a good idea to be on the medication to be on the safe side. Especially when you get to the age where you are able to drive yourself because if the medicine actually does control your seizures. Your a lot less likely to hurt yourself or someone else when your driving.
I don't think anyone handles having epilepsy very well at first. It's hard. Most of your close friends will be understanding.It's great that your boyfriend was so understanding though. My fiance is great and he helps me through all the rough times I've had in the past two years.
I was wondering what kind of medication you take? I take Depakote 500mg tablets twice a day. At first they cause a little weight gain and they make you kind of tired.And as far as being moody, well it doesn't really make you moody. Depakote is used in higher doses as an anti-depressant, so if anything it kind of makes me feel better. Right now I'm trying to change to Lamictal,because supposedly it won't make me as tired.
It's a little scary at first,but you learn to live with it and not let it hold you back. I've done pretty much everything a normal teenager would do, and now what any normal college student would do.
If you have anymore questions I might be able to help. I'll try and answer them to the best of my ability.
Sincerely,
Alyssa

Hello hello,

I'm 27 and I was just diagnosed with Juvenile Myoclonic Epilepsy too! I've been dealing with it for the last ten years unknowingly.

I had gone through several diagnostics when I was a teenager and nothing seemed to work. I was on dilantin but continued to have grand mal seizures on it until they took me off dilantin and onto salt tablets. (Come to find out the dilantin actually caused them hah!) I went ten years without going to a neurologist and had various seizures but anything was better then when I was on dilantin. I lost trust in the doctors and just dealt with the seizures at that point.

Fast forward ten years later to now when I felt like I needed a checkup as I had a couple myoclonus's (the jerks) that felt like they could be something more. I love my new neurologist who really explained things. I'm also more confident in letting him know exactly what is going on and that's really helped as I couldnt word things when I was younger, whether it be to my dislike for the neurologist, fear, or just lack of understanding of what's going on.

I just started Keppra XR yesterday and I'm a bit woozy but hopefully next week I"ll be back to normal. Apparently for woman, this is the better of the three as it has less womanly effects (no gain weight issues). He said the worse that could happen is the mood swings but only in people who seem to already have problems. It's 500 mg and is now a once a day prescription which is great! They also have a patient savings program that brings the price to $25 which is a huge savings.

The doctor also suggests taking folic acid due to my age to help prevent issues with reproduction and also can help counteract mood swings/depression. Just something to think about.

Yeah ladies having JME is for the birds. I am 31 and I was diagnosed at age 16. It is a hard thing to face but we need to look on the bright side of things. There are many worse forms of Epilepsy out there. So if we are stuck with having one this is the one to have. It is very controlled with meds and it does not do permanent damage to one specific part of the the brain and do brain damage.
I have had a very normal life. I have been married (and divorced lol) I have two beautiful children. I was told that JME is hereditary after I had 2 kids. Also the chances of your offspring having it is pretty slim it usually skips several generations. Which is still bad, but I had no idea that I could pass it on.

Bethany keep your head up. I did all the teen age things. I went to prom I drove I got married an had kids. You can have a normal life. You need to follow the rules tho. Try to get the sleep you need and I know its hard I am a night owl bad! And I know all teens drink but that is one thing I did not do. I think half of my friends are alive right now because of me lol. I was always the designated driver. I still always had fun and all of my friends understood my condition and always looked out for me.

Alyssa I know what you mean about the "Word finding" I hate that! I dont think it is the Epilepsy itself its the meds. I have taken depakote and also Lamictal. I hated Depakote it made me fat and made my hair fall out. I did take it for a long time despite those two things. My doc told me that Lamictal is the best drug for JME. I took it but it was not for me. I hope it works well for you.

I take Keppra and Topamax. My Doc wants me on Topamax as a stand alone drug so we are reducing my Keppra now. Which scares me bacause I was on Keppra for years stand alone seizure free. Oh by the way Topamax will make you lose weight Big time if the Lamictal does not work out for you.

Also to both of you these drugs we have to take are very expensive so if you do not have insurance most of them have programs that will give you your meds each month for free. I just got laid off from my job so now I have no insurance and I was freaking out! Just do a search like I did Keppra Patient Assistance Program and same with my Topamax. Almost all drug companies do this now. See if you qualify it helps a lot to get your meds for free.

Hope this helps and good luck!!!
Shonda