I'm 14 And I Have Juvenile Myoclonic Epilepsy

Hi viki

i was diagnosed with jme when I was 19 - i'd actually had it since I was 17 but I thought the jerks and twitches were nothing to be concerned about until I had a grand mal seizure and then I went down the road of being tested for epilepsy and the result of a sleep deprived eeg came back as jme.

I take epilim (sodium volporate) to control my epilepsy now - one of the side effects for me has been weight gain but not too much and i'd rather that then having my arms jerking above my head. I tried lamotrogine but had really bad panic attacks on that and I also tried topamax and had bad side effects on that. You will find a drug that suits you - it is a very individual thing. Like I say, i'm on epilim and I think it's fantastic for me but then I know people who can't stand it and then again, i've tried topamax and lamotrogine and I couldn't stand those anti-epileptic drugs but then I know people who think they are fantastic. At first, finding the right anti-epileptic drug is a case of trial and error because nobody, not even the doctors, can know how you will take to it - you just have to give it a try and if one doesn't work then you have to try something else until you find the right one. Fortunately for me, epilim worked straight away but i've had to mess with it recently because I want to try for a baby. There is a slightly higher risk of having a baby with spina bifida when you take epilim - there is a slight increased risk of birth defects with all aeds but epilim seems to hold the highest risk for spina bifida (all women hve 2-3% risk of having a baby with spina bifida but the risk is slightly increased to around 6% for women on epiim)

i very often get a feeling of having a jerk but it feels like it's inside my head - feels like I can feel misfiring or a jolt in my head. I also get a lot of twitches which is due to jme. I've just had epilim increased to try and stop these.

I have read loads too on jme too and although it says jerks usually happen in the morning, I find that I sometimes get the jerks inside my head throughout the whole day.

Have you had 24 hour eeg yet? I had quite a few eegs which all came back as normal so my neuro wanted me to have a sleep deprived eeg because he said that seizures in jme are usually triggered by lack of sleep so sleep deprived eeg would detect jme and fortunately it did and I was able to start on my meds and get it under control. When I was told I would have to have a sleep deprived eeg, I wasn't happy and didn't want to do it but when results showed jme and I could get sorted out, I was happy that i'd had it done.
I've had a 24 hour eeg done too - had to stay on an observation ward in the hospital and walked round with a portable eeg machine and had to sleep with it on too but it didn't really bother me - I knoew from past experience of having the sleep deprived eeg that it's worth it in the end because if eeg detects what the doctors are looking for, then they once they have the results they are looking for they can get on with treating you with correct medication.

Hope everything works out ok for you.

Hi there!
I was also diagnosed with what was thought to be jme, however it never went away I am now 22, and I still have not outgrown my seziures. I am also on valproate sodium, however I find that I have lost weight (only about ten lbs or so) in the last ten years... This could also be because I am done growing, other than that, I have found llittle side effects to be concerned about. Maybe less energy than I used to have.

I've read a few of the posts regarding jme and I have been in the same boat as most of you.

I was diagnosed at 15, however first seizures occured at 14. I'm currently 24, been through too many eeg's to count, been on epival for the same amount of time, and on my last visit, I found out I will most likely never outgrow it.

I will admit that this is the most stressful thing that i've ever dealt with, and it really sucks seeing as how my seizures are brought on by stress.

I basically thought I was in this alone, and as sad is this is to say, i'm glad there are other people out there who are going through what I am.

For those of you just diagnosed, stay stong b/c you may be the lucky one that gets to grow out of it.

anifan: Do you have JME or something else?

The myoclonic jerks can happen through the whole day but most on awakening. The jerks can be strong or they can be invisible. The EEG test has to be performed after sleep deprivation, during sleep and on awakening from sleep.

Triggers os seizures are: lack of sleep, alcohol use, menses, time of day (usually morning), lack of medication, emotional and physical stress, calculations.

I think that it's JME. I'm very curious - is it JME?

Looking forward hearing from you!

Kind regards
Anne