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Juvenile Myoclonic Epilepsy

Hello,

I just turned 16 a month ago now and i was diagnosed with Juvenile Myoclonic epilepsy a few days before.

I knew something was wrong with me but it shocked me completely.
I had my first seizure when i was 13 turning 14, it was pretty scary. Then 3 years later around the same time, i had another, more serous one. I wound up in hospital for the night. When i had my first one i had to get eeg's done and they came back normal so we dropped it. This one i had to have 2 Eeg's, an mri plus a sleep deprived eeg.
They all came back normal except for the Sleep deprived one.
Thats when my neurologist diagnosed me.

After i had my most recent seizure i had been noticed my body twitch and jerk around. Its fairly annoying haha.

The doctor gave me an option about the medication, i made the decision to go on it. My dad wasn't giving me the support that i needed because he was against it. He thinks i'm fine i just need to sleep more. Which is true but i have anxiety issues and i would rather be safe.

I didn't handle having Epilepsy well, i still have my moments.
I don't have a lot of friends that have problems with their health and they didn't really care that much, but the main ones i have were good with helping me but they just don't understand what i'm going through.
Once i started taking the medication, i became very moody and emotional and took my frustration out on my boyfriend who is my best friend, he is the only one who understands. I hurt him a lot though, Which i'm truly sorry for.

The side effects of the medication didn't really effect me too much. I'm taking 4 tablets a day. But during my school certificate began to feel nausea and nearly fainted
My body is now used to it and i don't have nausea anymore, which is a relief.

I don't really know much about what i have which is why i joined this forum, to understand more because this is something i'm going to have to deal with for the rest of my life and it scares me.

I have decided to go and talk to someone about it and my other issues i have going on in life, i think that will help me a bit. But writing all this down today has let out a lot of emotion.

Thanks for reading Smile
If you could help me, it would be much appreciated.

Yours Truly,
Bethany
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First Helper beth5879
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replied March 15th, 2009
I also have Juvenile Myoclonic Epilepsy (JME)
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
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replied April 3rd, 2009
27 with JME on Keppra
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.
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replied October 28th, 2015
did your doctor's take your license away when you were diagnosed? I was diagnosed with Juvenile Absence Epilepsy at age 16, and they took my permit away. On Keppra, my absences went away and at 19 I was weened off. Now, a year and a half later, I'm having myoclonus's in the mornings and I'm scared that if I go to a neurologist now, they'll take my license away again. I need it for work and am terribly worried about it.
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replied April 6th, 2009
JME
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. Sad

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
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replied January 17th, 2011
Hello,
Reading through all your posts was really helpful. I haven't been diagnosed yet but it sounds something like this. 5 or so years ago when i was 15 i stayed up all night talking to a mate and then had to get up to leave the next morning a couple of hours later. I got up and was jerking really badly, it had never happened before and i thought it was pretty crazy but it was obvious to me it was cos of lack of sleep. Throughout highschool i didn't really have a repeate of that episdoe apart from odd eye twitches and towards the end of 7th form it started to happen a bit more frequently.
I started uni and progessively it got worse, so it went from just being from a lack of sleep till recently i would just wake up and be shaking. I've had loads of tests done, seen all sorts of people, naturopaths, chiropractors neuros doctors, etc, my initial eeg and mri came up normal, all my tests show i'm healthy but clearly theres something wrong because i had a proper siezure blanked out and woke up in ER.
That was last month and since then i've had a couple more seizures...they happen at night and i can sense it coming-if i'm jerking badly prior to it. I have to get another mri and eeg for the outpatient clinic from the hospital but ive been waiting for a good 2 years to get a proper diagnosis and it's quite frustrating because i've hit a point where its effecting my work and studies, basically i need something to control it to lve a normal life. I'm a bit scared that they wont find anything conclusive-its the not knowing thats really frustrating. The last neurologist just said "benign myoclonus probably, 90% of the population get it", which i thought was ridiculous cos 90% of the population don't have seizures or jerk often during a certain period of time. (usually the week surrounding my period).
He just didn't seem to really care that much and smiled and nodded. Didnt really care that i'd knocked my head cos i fell out of bed one time when i was jerking really bad.
So i'm 20 now, got an MRI tonight again and seeing the neuro next week. Hopefully they'll suggest some of this medication youse are talking about.
But I'm still not sure it is this, the more I read about it i think it is.
Thanks for all your sharing, it was really helpful!
I hope your all doing well =)
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replied January 31st, 2011
14 year old jme
Hi everyone,
My son 14 yrs old has just been diagnosed w jme.he is a very gifted basketball player.although docs say to continue playing as usual,i really worry about him.The practices are sometimes very intense,and he gets really tired.What would you recommend us?
Thank u all,god bless u and hope fully u will outgrow it one day
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replied August 9th, 2011
Hi. My 10 yr old son was just diagnosed as well and we've so far had a bad battle with meds. He's not athletic like yours, but here's what I would say. Really stress to the coach about the importance of him not overdoing it. Explain what can happen and what to do about it (there is a great form on www.epilepsyclassroom.com that you can fill out and give to teachers, etc). Good luck.
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replied August 15th, 2011
Juvenile Myoclonic Epilepsy
Hi Everyone,

I am 23 and was diagnosed with having JME last year. I started having myoclonic jerks when I was about 17 and never thought anything of it. Thought it was because of sleep deprivation or excessive alcohol intake. Very annoying! I drop things and spill things and have people look at me like i'm clumsy or just...weird. Even friends and my mom, who know about my condition, look at me with such a look of concern when it happens and it makes me feel uncomfortable even though i know they can't help it. It usually happens early morning when I don't get enough sleep or sleep too much, or, drink alcohol. I was prescribed Depakote but still have not taken it because I lied to myself for a long time and told myself I didn't have it since my test results came back negative and I have not had a seizure since last year. My first grand mal seizure happened when I was 19 I believe. I was driving home from my friends house after a night of drinking and I was looking for a highway. The next thing I know I was in an ambulance with paramedics asking me if i remember what happened. I had no idea. They told me I crashed my car into a side barrier (thank god it wasn't into any cars or a bridge) and asked if i knew how old i was or my name....i didn't. I went to the hospital and they did a bunch of tests, everything came back normal. I did, however, bite my tongue, which was an indicator of a seizure but since it was my first one, the case was dropped. Everything continued as it was, with me still having myoclonic jerks every once in a while. Then, when I was 22, I was in the car with my friend and I was driving....she noticed that I was having "muscle twitches" and told me that she wanted to drive. We switched places and the next thing I remember was me dropping my phone and leaning down to pick it up. I had another seizure. I woke up to paramedics, once again, asking me how old i was and what my name was, I didn't know. I went to the E.R and had tests done again. Everything came back normal but my neurologist told me that I had a form of epilepsy. I did not want to believe him. He told me he needed to suspend my license for 6 months while being on depakote. His instructions were, after being on depakote for 6 months, I had to go back to his office and have blood work done and an EEG done again and then if i was seizure free he would restore my license. Stupidly enough, I disregarded the medication until now. I started to take it today when I woke up with myoclonic jerks again. It is a very hard thing to admit to oneself. You never want to be THAT person, and you think "Why Me?" Well, why not me? is more of the question. I am slowly starting to grasp and deal with the fact that I do suffer from JME but that is just another thing I need to live with. My great grandmother had epilepsy and I just recently found out that it skips several generations...so...there you have it. I understand what you ladies are going through and I am happy to know that I'm not alone.
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replied August 16th, 2011
Thank you so much for sharing your story. I fully understand the part about being in denial. I sometimes think "no, my son can't have epilepsy" and "there's no way because nobody we know of in our families have it". I think that once we get to a place of acceptance (which is where I am at now), it's easier to move forward. I hope you have better luck with the Depakote than we've had. Our first med was Keppra, which is what wound him up in the children's hospital twice, the second time for an entire weekend. Now he's on Depakote (which isn't working and will be weaned off) and Zonegran. I pray you find what works for you and live seizure-free for years to come. Smile
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replied December 18th, 2011
Bethany: Did you sleep during the sleep-deprivated EEG-test? Was it performed while you were awakening?
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replied January 18th, 2012
well, im 35, looks like i've had JME since my early 20's (as far as I can remember) but put it down to waking up at 4am to go to work. I would occaisionally spill things etc. I went to a doctor who checked my heart but no EEG or anything, and he didnt know what it was and pretty much that was it. So I just lived with it, like it's something wierd but didnt know what it was. These things only happened randon=mly in the mornings, and it all seemed handlable really. But then when I was 33 I guess a JM got me at a vulnerable time when I was stressed/tired/over exercised and I woke up in the ambulance after a seiz. Had tests, and all negative. Then 6weeks later another one. So I went on tegretol which stopped the tonic/falling down kinda seizures but i would still get the JM's. Well, I figured it was part of the package but at least they werent spreading -and they aren't so far. But here I was thinking i had some full on E and it looks like probably I actually have JME... shock on shock eh. Just when i start to get my life back together and am driving again. Ahhh... So yeah, it's a hard world sometimes. And it sucks to be on pills and have 'problems'. And to always take meds etc etc... But life is life eh. Something is broken and cant be fixed.
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replied April 30th, 2013
JME Treatment
Hi, I'm 35 and have had Epilepsy since i was 12. It started with petit mal seizures as they were called back then. I would blank out and stare off into space for a minute then come back too. I took meds and eventually went off. At the age of 15while babysitting i had my very first grand mal seizure. I woke up to an ambulance and the standard q's. I went unmedicated for quite some time. Occasionally getting the monoclonic jerks whenever i was over tired or awaken abruptly. I lived med free and monitored my life style over the years and had occasional jerks but all was ok. In the past 3 years i have noticed a huge increase in my jerks. Almost monthly, either the week before or after my period most notably. I started seeing a neurologist who suggested i try the medication lamotrigine. I have been on the meds for about 5weeks and felt good. However yesterday i had only 3 hrs sleep and woke up to the jerks again! ughhh I hate having them. I have to sleep for them to go away and sometimes they last all day. i wonder if anyone has had similar situations or what meds have worked best for you or how Lamotrigine has worked for you. what i really want to know is, is there a medication i can take for these to stop! BTW love this site!
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replied May 8th, 2013
Hi, I'm 35 and was diagnosed back when I was 19, although I had some symptoms several years earlier and brushed them off as nothing. I've been on lamotrigine since 2005, prior to that I was on epilim, but it dulled my senses too much.

The lamotrigine is working for me, I have occasional siezures, say every 1 or 2 years, but apart from that, I'm fine.

In the early years, I had a hard time accepting it and would go out drinking every weekend with my friends, but I've stopped all that now.

I've learned to live with it and I lead a normal life, apart shoulder issues since I have a habit of dislocating them when I have a seizure, but I manage.

I wish you all well.
Adam
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replied August 29th, 2013
I'm 32 and have been having seizures since I was 16 but I only got diagnosed when pregnant with my first child at 18, iv managed to start reading my body n can usually keep my jerks/fits under control but find if my children arnt well or if iv had a bad night sleep it effects me which in turn stops me from going to work but to add onto all of this (which may I say iv accepted for many years )my 13 year old daughter is worried incase she will inherit this from me! Can any one please advise or inform if this has happend to them as it breaks my heart to know she's this worried about what might happen. Thankyou xxxxx
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replied August 30th, 2013
Hi Sarah!! Let me tell you..evn I have been diagonosed with JME since 2003...I have been advised Valporic Acid..it worked pretty good..but after 5yrs..I began to experience gynaecological problems..so changed it to Lamotrigine..now I have 200mgs each day..and have no particular problems..yess..sumtimes due to in adequate sleep or exam tension..jerks happen..but I totally ignore them..and concentrate on my studies..I will tell you one thing..during my exams I don't evn sleep for 5 hrs a day..but I nvr experience them..just because I nvr try to think bout all these things..just forget bout them totally..have your meds regularly..eat a good diet..and enjoy your life..nevr let yourself stressed bout the jerks..accept it as a part of your life...nevr feel shy or low bout it..it's none of your fault..and bout your daughter..evn I am advising her to stop worrying whether she will get dat or not..there are very slim chances of her having JME as it is generally not inherited..but if such happens..you can't avoid dat dear..if your mother despite of having jerks can give birth to you, take care of you,then why can't you do dat?? Stop worrying bout dat..because by doing this you are not only stressing yourself but also hurting her...so better stop worrying bout all these..trust in GOD, eat good, sleep good, enjoy your life...trust me since 2003 to uptill now..I am having a fantastic life..as normal as any other one of my age..even you can do that..just have faith in yourself!!!

Best Wishes
Bye Smile Smile
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replied November 25th, 2013
i have had jme since i was about 12 (im 27 now)but it took the doctors 10 years to properly diagnose me. id like to know if anyone else has a really bad memory? i mean i cant remember most of my childhood, people i meet,the things i got shown in class today.. is it my meds?i have trouble thinking aswell, and even just trying to make my body move because my response is so slow. im taking topiramate. i just want to be able to think. ive been medicated over half my life i dont remember what a clear thought feels like. is a lifetime lived with cotton wool in my head worth it?
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replied December 23rd, 2013
I was diagnosed with JME a month or two ago and am accepting it better than I expected. At first I was shocked because I always thought only other kids get these things, thankfully I had never really had anything "wrong" with me and to hear that I had JME was definitely a little scary. I'm 15 now and have been having what I now know were myoclonic jerks since I was 12. I thought I was just tired and clumsy in the morning and would drop my toothbrush, or be eating cereal and drop my spoon; I never thought anything serious of it. I am on Levetiracetam aka Keppra, and take 500mg twice a day. I'm reacting well to Keppra other than being a zombie when I wake up. I have only been on Keppra 9 days, but so far it seems to be working well. I have a few worries such as getting my permit/license in the next few years and being a doctor one day. I know that medical school does not allow for one to get much sleep, then again high school does not either. It has been very reassuring to read all of your stories, especially those of you who have had JME for many years.

Good luck to you all!
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