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Old 11-14-2007, 09:28 PM   #1
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nata123 HB User
Juvenile Myoclonic Epilepsy help!

I was diagnosed with juvenile myoclonic epilepsy at 13 and i'm on lamictal. I get jerks in the morning right after i wake up as well as falling down. (even if i do get enough sleep) and i have to lay in bed for an hour before i can wake up. I can't do sleepovers at anyones house and its just really tough at my age. I'm a junior now and i'm just worried about college. I want to go out of state. So I would like commentary mainly from people who have jme and have gone to college.

how were you in college? did it affect your fun? i don't want that to happen. i don't want to be the one who goes to bed early on a friday night. I'm a very social person and i feel like this will hold me back some. I dont know how i am going to do it. I need back up! how was college life for you?

will this disorder ever go away? is it impossible or rare or common for it to disappear?

anyone tell me anything you know! thank you!

 
Old 11-15-2007, 09:44 AM   #2
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Eilidh1 HB User
Re: Juvenile Myoclonic Epilepsy help!

Hi Nata

I'm 26, female and have JME. I was diagnosed at age 17 - just when I was starting to drive and go out (we can drink at age 18 here). So it wasn't easy for me or my Mum - who was worried sick everytime I went out. I went on to Lamictal first, which made me vomit in the mornings, and my seizures still weren't controlled but I still stayed over at friend's houses. Can I ask why you're not able to? Although my seizures weren't controlled particularly well I still left home to go to university and had a great time (and graduated). I did however stay in my home city, but this was because the uni here is good, not because of my epilepsy (although I'll admit it did help when I passed out in the street on my own).

JME can't be cured and it won't go away. It can however usually be well controlled, or the seizures minimised through treatment. I'm one of the few cases where it's not been controlled, so I have frequent seizures and I can't drive. This has not affected my quality of life. I'm happy. I'm back at university and go on strage regularly. I have a wonderful boyfriend, family and friends, and hopefully a successful career ahead of me.

Even if we can't control our seizures, we can't let them control us.

Eilidh
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Old 11-15-2007, 03:02 PM   #3
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nata123 HB User
Re: Juvenile Myoclonic Epilepsy help!

I can sleepover at peoples houses its just that whenever i did, in the morning i would get jerks and fall down and sometimes get big seizures and everyone would get worried and things! so i feel like i don't want to ruin other people's fun because of me you know? i heard that alcohol worsens it? did you still drink? did it make it worse? so there was nothing you did differently then the rest of your college friends? and yeah when you started driving did you have jerks sometimes? thats another thing i'm worried about. cause i haven't started driving yet. i just dont want one to randomly pop up and then i run through a red light or something. i know i try not to let it control me its just tough you know?

thank you so much by the way! i appreciate this soo much!

Quote:
Originally Posted by Eilidh1 View Post
Hi Nata

I'm 26, female and have JME. I was diagnosed at age 17 - just when I was starting to drive and go out (we can drink at age 18 here). So it wasn't easy for me or my Mum - who was worried sick everytime I went out. I went on to Lamictal first, which made me vomit in the mornings, and my seizures still weren't controlled but I still stayed over at friend's houses. Can I ask why you're not able to? Although my seizures weren't controlled particularly well I still left home to go to university and had a great time (and graduated). I did however stay in my home city, but this was because the uni here is good, not because of my epilepsy (although I'll admit it did help when I passed out in the street on my own).

JME can't be cured and it won't go away. It can however usually be well controlled, or the seizures minimised through treatment. I'm one of the few cases where it's not been controlled, so I have frequent seizures and I can't drive. This has not affected my quality of life. I'm happy. I'm back at university and go on strage regularly. I have a wonderful boyfriend, family and friends, and hopefully a successful career ahead of me.

Even if we can't control our seizures, we can't let them control us.

Eilidh
x

 
Old 11-16-2007, 01:09 PM   #4
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Eilidh1 HB User
Re: Juvenile Myoclonic Epilepsy help!

Hi Nata

I think the best thing you can do about sleeping over at friends' houses is just making them aware of what to do if you have a fit, just re-assuring them that you'll be ok and that it's no biggie. Obviously it's up to you if you're comfortable with this or not. I try to be as relaxed with everyone as possible about my epilepsy, open to questions, and jokes - because if we can't laugh about it then we run the risk of crying after all. If my friends see me having a fit we usually eventually end up laughing about it - I believe it is the best medicine. For example - I had a fit in the student's union, got up and put my bag on my head because I thought it was a hat - nobody has let me forget it! So talk to your friends and see how they feel about you having seizures. I'm sure they obviously don't like seeing you go through it, but I doubt they'd want you to miss out either.

I did drink for some of my time at uni, but alcohol is bad with some medications. Some people also find that alcohol or lack of sleep increases their chances of having a seizure. However when I stopped drinking (for about 2 years because of the type of drugs I was on) at uni I didn't miss it. I found that when my friends' moods lightened with alcohol I became merry anyway, the only difference was I felt a lot better than they did the next morning!

Where the driving's concerned, if you're having seizures DO NOT DRIVE. I don't know about the laws where you live but here you must be seizure-free for one year (or if you only have seizures whilst sleeping you can drive after 5 years). But this is about more than laws, it's about personal safety and moral obligation. If I had a seizure whilst driving and killed somebody, I'd feel no different than a drunk driver. I hate not being able to drive. I'd give my left arm to be able to drive. But I just wouldn't drive while I was having seizures. Anyway - sorry if I ranted about that a little - that's my 'aaargh! topic'!

Eilidh
x

 
Old 11-16-2007, 01:25 PM   #5
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nata123 HB User
Re: Juvenile Myoclonic Epilepsy help!

Thanks that really helps! that makes me feel a lot better! i appreciate it! and like what i dont understand is like jme people who have kids like theyd normally have to stay up and take care of them when theyre little babies i mean how would they take care of the baby cause if you didn't have any sleep couldn't you drop them? haha i know i'm getting pretty deep with my questions!

Quote:
Originally Posted by Eilidh1 View Post
Hi Nata

I think the best thing you can do about sleeping over at friends' houses is just making them aware of what to do if you have a fit, just re-assuring them that you'll be ok and that it's no biggie. Obviously it's up to you if you're comfortable with this or not. I try to be as relaxed with everyone as possible about my epilepsy, open to questions, and jokes - because if we can't laugh about it then we run the risk of crying after all. If my friends see me having a fit we usually eventually end up laughing about it - I believe it is the best medicine. For example - I had a fit in the student's union, got up and put my bag on my head because I thought it was a hat - nobody has let me forget it! So talk to your friends and see how they feel about you having seizures. I'm sure they obviously don't like seeing you go through it, but I doubt they'd want you to miss out either.

I did drink for some of my time at uni, but alcohol is bad with some medications. Some people also find that alcohol or lack of sleep increases their chances of having a seizure. However when I stopped drinking (for about 2 years because of the type of drugs I was on) at uni I didn't miss it. I found that when my friends' moods lightened with alcohol I became merry anyway, the only difference was I felt a lot better than they did the next morning!

Where the driving's concerned, if you're having seizures DO NOT DRIVE. I don't know about the laws where you live but here you must be seizure-free for one year (or if you only have seizures whilst sleeping you can drive after 5 years). But this is about more than laws, it's about personal safety and moral obligation. If I had a seizure whilst driving and killed somebody, I'd feel no different than a drunk driver. I hate not being able to drive. I'd give my left arm to be able to drive. But I just wouldn't drive while I was having seizures. Anyway - sorry if I ranted about that a little - that's my 'aaargh! topic'!

Eilidh
x

 
Old 11-17-2007, 11:59 AM   #6
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Join Date: Apr 2004
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Eilidh1 HB User
Re: Juvenile Myoclonic Epilepsy help!

Hey Nata

Don't worry about asking too many questions, that's what these boards are for!

Although I've not had any kids of my own I know that millions of people with JME become successful parents. I'm sure your doctor has gone over the particular importance of family planning for people with epilepsy, not only so that Mums-to-be are monitored and given extra folic acid etc, but also for things like support for you. If sleep deprivation is a major trigger for your seizures then, yes, motherhood could be a bit more difficult, but if you have a supportive husband/boyfriend by your side this would make it a lot easier. Also family and friends of course!

For those who don't have the luxury of support, planning is probably the key. You need to take into account your need for sleep (like any Mum really) when thinking about raising your baby, and there are techniques (mainly centred around strict routine) that aim to get babies sleeping through the night quickly etc. If you're still worried about having seizures and dropping the baby, simple things like trying to sit down as much as possible when holding the baby probably help the most. Remember - you don't have to be epileptic to drop a baby (like my sister dropped me for example...) and if you are epileptic it doesn't mean you'll be any less of a parent - so don't let that stop you having kids!

Eilidh
x

 
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