JME anyone?

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Hi guys. Just came across this forum while browsing for support groups. Having a bit of a problem with the new drug I've been taking for Juvenile Myoclonic E. Want to know if there is anyone who's had their condition worsened after taking Lamictal? Hope to get some help out here. Thanks!
 
Hi sapphireblue -- Welcome!

I moved your post to The Kitchen forum so other folks would see it and respond.
Lamictal is generally effective, but there have been reports of Lamictal making seizures worse in JME, particularly myoclonics.

Below are a few links from the CWE archives that you might find helpful:
The first link takes you to page with threads specifically tagged with "JME".
http://www.coping-with-epilepsy.com/forums/f20/new-curious-about-juvenile-myoclonic-epilepsy-15996/
http://www.coping-with-epilepsy.com/forums/f20/juvenile-myoclonic-epilepsia-17432/
http://www.coping-with-epilepsy.com/forums/f20/i-have-jme-but-never-had-grand-mal-seizure-7126/
http://www.coping-with-epilepsy.com/forums/f23/juvenile-myoclonic-epilepsy-question-23218/
http://www.coping-with-epilepsy.com/forums/f23/aeds-juvenile-myoclonic-epilepsy-2168/
http://www.coping-with-epilepsy.com/forums/f42/12-year-old-son-diagnosed-jme-20311/

Best,
Nakamova
 
Hi there sapphire blue, I realised some months ago that my daughter has probably has JME (the E nurse agrees). She has been on lamotrigine for nearly 2 years now. We've had to up the dose a couple of times, principally because of absences (she has had TCs but pretty rarely). As it has gone up, she's had increasing problems with myoclonics.

At the moment she is just putting up with them because the absences have improved and she doesn't especially want to change meds.

What problems are you having? Were you previously on different meds?
 
Thanks a lot Nakamova!

Jane C, I'm 26 years old and had my first seizure(grand mal) around 11 yrs back. Was put on spdium valproate (depakine) for 3 yrs and then taken off them and was seizure free for 6 yrs. Last Dec, I had a relapse cuz of a herbal medicine I took, and it resulted in 5-6 hrs of constant, pronounced jerks and really strong short circuit sorts in my head (sorry dunno the exact term for this).

Anyhow, my EEG taken in my home town, showed a teeny little abnormality and I was put on Rivotril this tym (25mg am and pm).
Showed a second doc who finally diagnosed it as JME and suggested Lamictal cuz of the obvious side effects of Rivotril.

Was weaned off Rivotril and started Lamictal (25 mg am and pm)from May 15th this year and honestly, the last 2 months haven't exactly been the best 2 months. Side effects in my case are as follows:
1. I keep getting these tiny, almost imperceptible jerks every now and then, which I never had when seizure free, or on Rivotril. I dunno if these are myoclonic jerks or not but they're more frequent, and not just in the morning.
2. Insomnia- I thought this was just another offshoot of my stress, but I haven't ever felt sleepy around the normal 11-12 pm. Invariably end up tossing around till 3 pm almost every single day.
3. Initially, I'd keep having this weird fuzzy feeling, where I sorta sense of impending danger lol, and can't stand being touched by someone, or even loud music or noise of any sort. I'd just want to go lie down and clutch my pillow as even sitting still made me feel worse.
4. Poor memory- Ok this came up in just the last 2 weeks or so but it's the most worrying. I'm unable to recall trivial facts which I normally dint have to try hard for. It's been getting noticeable and more embarrassing and I feel like I'm a century old suddenly.

I'm seriously considering going in to get an EEG again and get the drug changed. How's it been going for your daughter JaneC?
 
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