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Juvenile myoclonic epilepsy (JME)

What is a syndrome?

A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begin the type of seizures, whether the child is male or female and whether they have physical or learning disabilities, or both. The results of an electroencephalogram (EEG) are also used to help identify epilepsy syndromes.

Epilepsy Action has more information about seizure types, learning disabilities, and the EEG.

If you would like to know more about an epilepsy syndrome, please speak to your doctor. If you would like to know more about epilepsy in general, please contact Epilepsy Action.

Other names for Juvenile myoclonic epilepsy (JME)

  • Janz syndrome

Juvenile myoclonic epilepsy (JME)

This is a common epilepsy syndrome that begins anywhere between the ages of eight and 26 years. But it usually starts between the ages of 12 and 16. It is more common in girls than boys.

Symptoms

People who have JME have three types of seizures: myoclonic, tonic-clonic and absence seizures.

Myoclonic seizures cause you to have sudden jerks of your muscles, either in your arms, legs, face or whole body. These seizures usually happen soon after you wake up and possibly when you are getting dressed or having breakfast. You may also have them in the evening if you are tired.

Two thirds of all people with JME also have tonic-clonic seizures. They usually happen in the morning, within an hour or two hours of waking up. You are more likely to have these seizures if you have been to bed late the night before, or have woken up earlier than usual.

About one third to one half of children and young people with JME also have absence seizures. These can happen at any time of the day, but are most likely in the morning.

Photosensitivity means that the myoclonic or tonic-clonic seizures are triggered by flickering or flashing light. It affects around four out of 10 people with JME. Photosensitivity will usually show on the electroencephalogram (EEG) if you have JME.

Epilepsy Action has more information about types of seizuresleep and epilepsy and alcohol.

Diagnosis

It is important that the doctor making a diagnosis has a full account of what happens to you during your seizures. This is especially important if you are having any myoclonic or ‘jerk’ seizures, which can be easily missed.

If you have JME, the EEG is usually abnormal, and shows epileptic discharges coming from both sides of your brain at the same time. These are called generalised discharges.

Epilepsy Action has more information about photosensitivity

Treatment

Many people with JME have their seizures controlled with epilepsy medicines, particularly sodium valproate (Epilim). Sometimes lamotrigine (Lamictal) may be taken. Other medicines, including levetiracetam (Keppra) and clonazepam (Rivotril), may also be helpful.

Epilepsy Action has more information about epilepsy medicines.

Outlook

Around eight out of every 10 people with JME need to take epilepsy medicines for the rest of their lives. If the medicine is stopped, it is common for seizures to return.

Living with juvenile myoclonic epilepsy

If you have JME, you are likely to have seizures if you don’t get enough sleep. Drinking alcohol can also make your seizures more likely.

Epilepsy Action has more information about alcohol and epilepsy and sleep and epilepsy.

Support 

Contact a Family
Freephone helpline (UK only): 0808 808 3555
Website: cafamily.org.uk
Email: info@cafamily.org.uk 

Pay it forward

This resource is freely available as part of Epilepsy Action’s commitment to improving life for all those affected by epilepsy.

On average it costs £414 to produce an advice and information page – if you have valued using this resource, please text FUTURE to 70500 to donate £3 towards the cost of our future work. Terms and conditions. Thank you

Code: 
S005.02

Epilepsy Action would like to thank

  • Dr Richard Appleton, and Dr Rachel Kneen, consultant paediatric neurologists at Alder Hey Children’s Hospital, Liverpool, UK and
  •  Dr Stewart Macleod, consultant paediatric neurologist at Royal Hospital for Sick Children, Glasgow, UK.
    They have kindly prepared the information on this page. It is based on their own research, experience and expertise.

This information is exempt under the terms of The Information Standard.

  • Updated November 2012
    To be reviewed November 2015

Comments: read the 19 comments or add yours

Comments

Hi my son has jml was diagnosed at 11 has been on epillim chrono is on 750mls at night and 500mls during day just tonite he has had a seizure in his sleep which has never happened before I guess my question is I'm starting too feel I need too be around him more too protect him he has never worked and claims ESA and is in procces of claiming pip benefit do I need too get his melds looked at if he is fitting in the night now?

Submitted by Claire on

Hi Claire

Naturally you want to look after and protect your son. Perhaps you could contact the Disabled Living Foundation. They can advise you if there are any suitable seizure alarms that might help put your mind at rest.

Because there has been a change to your son’s seizure pattern it might be a good idea to see his family doctor or epilepsy specialist to have a review. They can look at his medicines and seizure control and make sure he is getting the best treatment and care for his epilepsy. He could also keep a seizure diary. This can be a useful record of anything to do with his epilepsy and may be helpful when he has a review.

If we can be of any more help please feel free to contact us again either by email or the epilepsy helpline freephone number 0808 800 5050

Kind regards

Vicky

Advice & Information team

Submitted by Vicky on

hi all, i was diagnosed JME when i was 15 and i'm 18 now, the medication that i am on is 500MG lamotrigine but my jerks are still of and off i get days when im completely fine and just have a couple of jerks which i would normally have as i wake up but then i get other days when im having the more jerks throughout the day the mornings are worse for example falling over and jerks that make me drop things. i have a 6 month baby and throughout the pregnancy my JME went really well and soon as i had my baby my seizures got bad again but now my jerks are off and on but they mainly come on when i wake up if im rushing about in the morning or if im really hot or im stressed is when they tend to come on. i dont know if i should ask to put my medication up higher or mention if i could change my medication, any opinions please right back. could anyone help me by giving me advice on how i can go about getting help with bus travel and train rail,

thank you , jodie

Submitted by Jodie on

Hi Jodie

As your seizures have increased, it’s certainly worth talking to your epilepsy specialist or epilepsy nurse. As you are already on quite a high dose of lamotrigine, they might suggest that you try a different epilepsy medicine, to try and get better seizure control.

You can find information about help with bus and rail travel on our Benefits for people with epilepsy web page.

As your seizures are bad and you have a young baby to look after, you could ask your health visitor if there is any extra help or support available, to make your home safer for you.

You might also find our information about looking after a baby when you have epilepsy helpful.

I hope that helps.

Amanda

Advice and Information Team

Submitted by amanda on

Hello my daughter has jme she is on Lamotrigine but to stop her jerks she is now on keppra hope this helps.

Submitted by Dee on

Hey there, I am currently eighteen and have had JME since I can remember, which actually leads me straight to my question. has anyone else had sever trouble with memory loss due to either JME itself or medication. I am particularly worried about this as I sit my A levels in three months.
Any help or ideas would be greatly welcomed.
Thank you Chloe.

Submitted by Chloe Vickers on

Hi Chloe

Memory problems can affect some people with epilepsy. The reasons for this are explained on our epilepsy and memory webpages. You may particularly find the memory enhancement strategies helpful.

To hear from others with similar memory problems, you may wish to try our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. It’s a good way to talk to other people in a similar situation.

If you are worried your memory problems may affect your exams, you could look into Exam support. This is known as access arrangements. But access arrangements need to be put into place before your exam period starts. Therefore, speak with your exams officer as early as possible.

I hope this is of help.

Regards

Diane Wallace

Advice and Information Team

Submitted by Diane on

hey, I have had these black outs where I lose my senses for about 30 seconds to a minute than I jolt back, its quite scary and sometimes I gasp or scream involuntarily when I jolt back

Its only ever happened on transport, and only when light is flashing through something.

I was tested for Epilepsy including the strobe light test and it all came back ok.

but these episodes still happen and it means I can't learn to drive, is it possible for the EEG to have missed it or is there anything else that's similar to epilepsy?

Submitted by Emma on

Hi Emma.

There is a possibility that the EEG may have missed something. If you are concerned about that, you might want to discuss it with your family doctor.

Cherry

Advice and Information Team

EEGs and epilepsy : epilepsy.org.uk/info/diagnosis/eeg-electroencephalogram

Submitted by Cherry on

Hi I am a 28 year old male and have had jml since 22, I have a problem as when the first jerks started to happen at 22 I had a grand mal seizure and got admitted to hospital in a ambulance, I had temp memory loss of everything!, then I was let out about a hour after bring told it was alcohol abuse! Anyhow after it happened the second time I was admitted to the neurologist, he did several test I.e full blood tests. EEG, MRI, and everything came back clear so put me on 25mg of lamotrogine. When I asked why? He said well your tests come back clear but we are putting you on these as a precaution! And to this day I'm still taking them without even being told what I have, I had to diagnose jme by myself. Anyhow I haven't ha a grand mal seizure since, but I still have the jerks sometimes not badly but enough to get in the way and mainly around once every month or so. But it's mainly after a night out drinking or when I'm tired ect. Is there any way or anything I can take to stop these jerks? Also am I allowed to drive? And also is this illness for life? Thanks for your time.

Submitted by Ashley on

Hi Ashley

Thanks for your question. Sounds like a tough and confusing situation. If you are still seeing your neurologist, talk to them to clarify your diagnosis and treatment. Otherwise, ask your GP about this, and request a new referral to an epilepsy specialist (usually a neurologist).

Our information about the diagnosis process may put some of what you’ve been through in context. Lamotrogine is an epilepsy medicine. 25mg is a relatively low dose. You could talk to your neurologist about this too. If your jerks are epilepsy, an adjustment to your epilepsy medicine may help with the jerks you continue to have.

Epilepsy is a long term medical condition. It is not necessarily a life-long diagnosis. Doctors may consider that you no longer have epilepsy if you go without seizures for a long enough. But, most people with juvenile myoclonic epilepsy need to take epilepsy medicines for the rest of their lives.

The driving rules require that if you have a seizure or suspected seizure you have to stop driving, notify the driving agency and surrender your licence to them. We are not medically trained, but the jerks you continue to have are likely a type of seizure. In general, you are allowed to drive when you have been seizure free for a year. There are more details about the driving laws and epilepsy in our driving section.

I hope you are able to get definitive diagnosis details soon, and that things start to improve.

Kind regards

Sacha

Advice & Information Team

Submitted by Sacha-Epilepsy ... on

hiya I was just wondering would it be ok for me to go to a nightclub as I have jme

Submitted by laura on

Hi

Thanks for your question. Going out to a nightclub is a personal decision that you will have to make. You’ll need to consider how well you have your seizures controlled, the things that can trigger your seizures, and if putting yourself in a situation that could involve these triggers would be worth the risk.

Common seizure triggers for people with JME can be not getting enough sleep and drinking alcohol. Nightclubs also often heavily use flickering or flashing lights, so if these can be seizure triggers for you, you may be adding to the risk. Only about 4 in 10 people with JME have photosensitive epilepsy, so if you’re not sure you could check with your epilepsy specialist.

If you decide to go to a nightclub, you might consider telling someone you are with about your epilepsy (although this is up to you). It can be useful if at least one person out with you knows about it. More importantly, let them know how they can help if you have a seizure.

I hope this helps.

Sacha

Advice & Information Team

Submitted by Sacha on

Hi my daughter has been having shudders due to her JME for 3 years now, is currently on Keppra 1,000mg morning and 1,000 evening. This am there appears to be a considerable increase in shudders but I am thinking it might be due to her medication being late by 2hrs and having a late night last night - I hope they settle any advice would be greatly received thanks a worried mum

Submitted by cindy martyn on

Hi

You are right to think a late night could trigger seizures in someone who has JME. And for some people, taking their epilepsy medicines late can also make seizures more likely. Your daughter might find our information about things that trigger seizures useful.

Kathy
Epilepsy Action Advice and Information Team

Submitted by Kathy@Epilepsy ... on

My daughter of 11 has just been diagnosed with jme on the 9th of January after having two nasty seizures! I feel powerless because she was/is a top judo player and swimmer and was so strong and fit! I keep asking why? How? Why now? Im lost and confused! And numb! I dont know what the future holds for my daughter and if she can continue with her passion for judo travelling the country and abroad! The meds? Will she have to keep taking them? Shes just started epilim and its making her feel awful! Tired sick and loss of appetite! Will this get better? Will the meds control the seizures? She has leg twitches and the consultant said thats where it comes from! We have had the MRI and EEG tests done and get the results tomorrow 21st January what am to expect? Please any help would be appreciated so much for this very worried and confused father!

Submitted by R Phillips on

Hi

It is a very difficult time for parents when they are told their child has epilepsy. But many parents find, as they learn more about epilepsy they find their own way of coping and moving forward.

If you think it will help you to talk to other parents of children with epilepsy, you could try using our social media services. We also have our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. It’s another good way to talk to other people in a similar situation.

I believe you have spoken to our helpline team about your concerns. But if we can be of more help please feel free to contact us again.

Regards

Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

My son was diagnosed with JME last May aged 11. He had twitching and jerky movements on 3 mornings last year, following a late night, but hasn't had a full seizure. He was also put on Epilim and has responded very well to it with no side effects. I would ask about getting your daughter's meds altered. My son is also very sporty - he still swims for a club, plays rugby and is 2 gradings away from his black belt at karate. Last summer he went surfing for 2 days. Under advice from the Epilepsy nurses at our local hospital, we haven't stopped him doing anything, just exercise a little more caution such as darkened lenses in his swim goggles. Obviously we watch him with hawk eyes even more now, but get the meds right and hopefully your daughter will be ok too. Having Epilepsy in your life is a huge thing to get used to, but it just becomes part of the routine. I was devastated when we first received the diagnosis, but we just get on with normal everyday life now. Try not to worry too much, it really isn't the end of the world.

Submitted by Andie Y on

Andie. I just wanted to say thank you for a very encouraging post. My daughter has just been diagnosed with epilepsy, myoclonic jerks, and it has shaken me to the core. She is struggling with the ups and downs of this condition and it really does break my heart to see her like this. After reading your post I feel more positive! Thank you!

Submitted by JessicaFrances on

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