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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.


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.


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


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.


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.


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

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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


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 25 comments or add yours


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


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


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.


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


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.

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


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.


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

My daughter who 14 has JME and only has seizures (jerking) ,on waking. Has anyone other found ways to lessen this issue? Her Nero said a few in the AM as long as they are not affecting breakfast or school she's not to concerned about unless they are. Clusters. Seeing any in the morning scared us cause of them possible leading to something bigger. Is there a better way she should awake?

Submitted by Bonnie Keith on

Hi Bonnie
Thanks for your message. Some people with JME find their seizures are worse when they don’t get enough sleep, so if you think this might be an issue for your daughter you could look at ways to help her get a good night’s sleep. This could include things like having a regular bedtime and avoiding stressful activities before bed. Our information about sleep and epilepsy might help.

Hopefully you will get some tips from others here. You could also try posting this on forum4e. It’s our online forum for people with epilepsy and their families.

I hope this helps. If you have any other questions feel free to contact us on the Epilepsy Action Helpline.

Best wishes
Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

My daughter started on levetiracetam-lupin yesterday morning, she is 13 and had 1 250 mg she fell asleep in class for a wee while, when she came home she was really tired. She took her next pill at around 7 pm and this gave her a bit more energy. She did not have a very good night and was really tired this morning, so I kept her off school, is this normal and will her tiredness settle down.

Submitted by Donna whiteford on

Hi Donna

Yes it is completely normal for someone to feel quite tired when they first start an epilepsy medicine. It’s the body’s way of protesting when something new is happening to it.

Over the next few weeks your daughter’s body should get used to the levetiracetam. The doctor will no doubt have suggested increasing her dose very slowly so that there is plenty of time for this to happen.

If your daughter is really struggling with tiredness or other side-effects, you might need to talk to the doctor about whether it would be possible to increase the dose more slowly.

If it then seems that levetiracetam is not the best epilepsy medicine for your daughter, there are many others it would be possible to try although they may not all be suitable for JME.

If you haven’t seen it already, you might find our information on juvenile myoclonic epilepsy useful. Also we have a website for young people that your daughter may want to look at.

Hope things do settle down for her soon

Epilepsy Action Advice and Information Team

Submitted by Cherry@Epilepsy... on

Hi my sister has JME, and it is really uncontrolled. She is on 3000mg of kepra and 250mg of lactimal daily. She was diagnosed at 14 and is now 21. Her epilepsy started as just myoclonic jerks however has progressed now to tonic clonic seizures. She seems to always have a seizure whilst exercising however local gps keep saying exercise is good for her epilepsy, her last 14 seizures have been exercise related yet apparently still no link. Also she only ever has had one EEG scan when first diagnosed and her medication is literally upped every time a seizure occurs without reviewing her thoroughly.

Submitted by Laura on

My 17 yr old daughter has just been diagnosed with JME, myoclonic jerks progressed over two yrs to dropping things and falling then she had a tonic clonic seizure after a sleep deprived eeg last week. She started Keppra after two days in hospital but has been complaining about a deep muscle pain in her back since the seizure (she was xrayed ) and she did not fall suddenly as I was able to get her to lie down on a sofa before the seizure started. Is it possible she may have ripped a muscle?

Submitted by murphy on


Thanks for your message. It is possible to tear a muscle during a tonic clonic seizure, so this could be what’s causing your daughter’s pain. Even if the muscle hasn’t torn, it’s not unusual for muscles to ache for several days after a seizure. This is because during a tonic clonic seizure the muscles tighten and release repeatedly. If your daughter continues to feel pain it would be worth speaking to your family doctor to see if they can help.

It must be a worrying time for the family following your daughter’s diagnosis. Some parents find it helps to chat to other families going through a similar thing. Our online forum4e is a good place to start. It’s a free online forum for people with epilepsy and their families to chat and support each other. Your daughter might also find it helpful to read our website for young people with epilepsy.

I hope this helps.

Epilepsy Action Advice and Information Team

Submitted by Grace, Epilepsy... on

I have jme since for a while but recently have been on keppra 750mg twice a day for my jme and been on it for about 2 months now I sometimes seem to look like Im going to faint or I stare into space for a few minutes could this be a seizure or just a side effect of the medication?

Submitted by rebecca unthank on

Hi Rebecca
Feeling faint is listed as a possible side-effect of Keppra. And staring into space could be an absence seizure.

But we’re not medically trained so couldn’t say for sure. They are both definitely worth talking to your GP and neurologist about.

Epilepsy Action Advice and Information Team

Submitted by Cherry, Epileps... on

I started having symptoms of JME when I was 14 and I have been on Keppra Levetiracetam 500mg morning and night for about 18 months now. The seizures have reduced although I get the occasional every now and then. The one problem I have with the keppra is that it has made me gain a lot of weight, I am up two dress sizes since I have been on it. Apparently this is meant to be an uncommon side effect but I haven't been able to escape it despite all my dieting and gym efforts. I went to see my neurologist today and he suggested maybe I try Epilim but I am nervous as the side effects seem to be much greater and scarier than Keppra. Is it worth the switch or should I stick to keppra?

Submitted by Adetoun on

Hello Adetoun
Many thanks for your message. This sounds as though getting the right balance between seizure control, and living with possible side-effects has been tough for you.

As we are not medically trained, we are not able to tell you whether changing medicines is the best choice for you. Epilepsy is very individual and each person’s body reacts differently to the epilepsy medicines they take. Some people experience side-effects, whereas other people do not. Although it may be a less common unwanted effect, some people do tell us that they have noticed weight changes whilst taking Keppra. Weight gain can be a more common side-effect of Epilim though, so it is worth considering this when making any decision. It is good that you have talked to your neurologist about how it affects you and discussed other possible treatment options.

It is understandable that you are worried about changing epilepsy medicine. Deciding whether to change epilepsy medicines can be a difficult decision. When a person changes medicine it is done slowly over a period of time, to try to reduce the risk of a seizure. Your doctor should monitor this carefully to make sure that the change is the best option for you. Many people tell us that although they experienced some unwanted effects when they first change medicines, they found that these became less over a few weeks as their body got used to them.

One thing to be aware of is that if you are a woman of childbearing age, Epilim (Sodium Valproate) may not be the most suitable medicine, as it can have negative effects on the unborn baby. It is recommended that Sodium Valproate is only used in this situation if no other epilepsy medicines have worked for you. This may be something you want to talk to your neurologist about if you decide to change medicines.

One other possible option to consider before changing your medicines would be to talk to your GP to see if there is any way they can support you. This may all add to the hard work you have already been doing with your diet and in the gym. It may be that you could be referred to a dietician and an exercise specialist to check that there are any other changes you could make to your diet and exercise plans. If you have not already done so, maybe you could also talk to the team at your gym about your epilepsy and epilepsy medicine. They may be able to create a personalised exercise plan for you.

Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Hi I'm 26 just been diagnosed with jme had my first seizure 4 months ago had 11 since been admitted too hospital 3 times also noticed flickering lights bring on seizure after being at a concert, suffering from short term memory loss. I take tonic clonic seizures absence seizures and myclonic seizures. My question is does anyone suffer from low self esteem dye too this? I also started taking panic attacks and prefer my own company now where before I was very outgoing happy and bubbly person now I'm terrified going out and being around people except my fiance and close family.
My confidence has also been affected aswell. My gp says I have depression but can't give me meds as can affect my meds I'm on keppra and lamotrigen and miazipan for bad seizures

Submitted by Laura on

Hi Laura
It sounds like things have been pretty difficult for you. Losing your confidence, having panic attacks and living with the uncertainty of seizures must make things even more difficult.

People with epilepsy can generally receive treatment for depression. We have information on epilepsy, depression and treatment that you and your doctor will hopefully find helpful.

Some people with epilepsy do struggle with their feelings such as depression and loss of confidence. How people come to terms is very individual. In most cases people find it helpful to talk to or contact people who understand what they are experiencing. If you think this could help you, you may find some of our other services helpful:

Local groups, facebook, twitter and our forum4e online community.

As you are still having seizures it’s important that you are seeing an epilepsy specialist regularly. They can then review your treatment. Many people with JME have their seizures well controlled with epilepsy medicines and are then able to get on with their lives without seizures getting in the way. Medicines that are usually considered are sodium valproate (Epilim),  lamotrigine (Lamictal), levetiracetam (Keppra) and clonazepam (Rivotril).

If you are not under a specialist, you will need to ask your family doctor to refer you. This would usually be to a neurologist. The ideal would be to someone with a specialist interest in epilepsy.

Finally, you could always talk to one of us on epilepsy Action freephone helpline 0808 800 5050. Our Advice and Information Officers will listen and hopefully be able to give you some friendly and confidential advice. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Diane Wallace
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

i was diagnosed with JME roughly around the age of 15. I'm now 25 and my condition still remains uncontrolled. I have absence, myoclonic, and occasionally tonic clonic seizures. I have tried a variety of medication. Currently taking lamotrigine. I've kind off accepted fact it's part of my life and unlikely to be fully controlled. In the last month or so I have been fairly bad and signed off work. However as I now have bills and a house to pay for i know I'm going to struggle with statutory pay. I also have to pay for transport to all my appointments as my partner can't always get out of work to take me and his took a couple of days off to care for me. I'm just curious if I'm entitled to any help or disability living allowance? My doctor, nurse at the disability center and neurologist have never mentioned it to me. Just thought it's worth an ask.


Submitted by mel on

Hi Mel
Having time off work can be a big financial burden. To see what benefits you may be entitled to, you may wish to use Turn2us benefits calculator. Turn2us is a national charity that helps people to gain access to welfare benefits, charitable grants and support services. https://www.turn2us.org.uk/

You may also find our information on benefits for people with epilepsy helpful. We explain the different types of benefits and give some tips to help when applying.


It’s good you are still seeing a neurologist. Hopefully, by seeing them they can review your treatment. There are different epilepsy medicines available to treat JME, so it could be worth discussing with your neurologist if lamotrigine is right for you.

They may suggest trying a different epilepsy medicine. https://www.epilepsy.org.uk/info/syndromes/juvenile-myoclonic-epilepsy-janz

If you have tried various types of epilepsy medicines, it may be the neurologist could look into other treatment options for you.


If we can be of any more help, please feel free to contact our helpline team directly. You can either email helpline@epilepsy.org.uk or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.


Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on