We exist to improve the lives
of everyone affected by epilepsy

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 8 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 3 types of seizures: myoclonic, tonic-clonic and absence seizures.

Myoclonic seizures cause sudden jerks of the muscles, either in the arms, legs, face or whole body. These seizures usually happen soon after waking up and sometimes when getting dressed or having breakfast. They may also happen in the evening or when the person is tired.

Two thirds of people with JME also have tonic-clonic seizures. They usually happen in the morning, within an hour or two of waking up. These are more likely to occur if the person with JME has been to bed late the night before, or has 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 at certain frequencies. It affects around 4 out of 10 people with JME. Photosensitivity will usually show on the electroencephalogram (EEG) if you have JME. Specific advice will be given about photosensitivity.

Epilepsy Action has more information about photosensitive epilepsy and different types of seizure.

Diagnosis

It is important that the doctor making a diagnosis has a full account of what happens during the seizures. This is especially important if the person with JME has myoclonic or ‘jerk’ seizures, which can be easily missed.

The EEG is usually abnormal, and shows epileptic discharges coming from both sides of the brain at the same time. These are called generalised discharges. Some people may be photosensitive.

Treatment

The seizures in JME are usually fully 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.

There may be research studies open that are relevant to this epilepsy syndrome. Your child’s doctor will be able to discuss this with you.

Information about treatments for children can be found on the Medicines for Children website.

Outlook

Around 8 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

People with JME are likely to have seizures if they don’t get enough sleep. Drinking alcohol can also be a trigger for seizures.

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

Support

Contact a Family
Helpline: 0808 808 3555
Website: cafamily.org.uk
Email: info@cafamily.org.uk

Code: 
S005.03

Epilepsy Action would like to thank Drs Richard Appleton and Rachel Kneen (at Alder Hey Children’s Hospital, Liverpool) and Stewart Macleod (at Yorkhill Children’s Hospital, Glasgow), consultants who specialise in children’s epilepsy, who have updated this fact sheet.

 

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

  • Updated June 2016
    To be reviewed June 2019

Comments: read the 29 comments or add yours

Comments

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

Cherry
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

Hi,

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.

Grace
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.

Cherry
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.

Karen
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
Laura

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.

Regards
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.

Thanks

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.

https://www.epilepsy.org.uk/info/benefits

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.

https://www.epilepsy.org.uk/info/treatment/other-ways-treating-epilepsy

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.

Regards

Diane Wallace
Advice and Information Team

Submitted by Diane, Epilepsy... on

Our 5 year old was diagnosed earlier today with JME following literally hundreds of little myoclonic seizures. I am surprised by how few some people have had to get a diagnosis, and also more concerned that she is so much younger than the demographic age suggests for diagnosis. Then you read the horror stories, so a little frightened at the moment to say the least!

Submitted by Jen on

Hi all,
I just want to give you all some hope!
I am 27 and was diagnosed with JME at the age of 15.
The myoclinic seizures were the worst, I was afraid to go to sleep (which only made things worse) at night & would literally pass out from exhaustion.
Afraid to pick anything up, because more than once I threw hot and sharp things across the room.
I fell down loads.
I tried epillim and lamotrogine and it didn't work for me.
Keppra they said was a newish drug and it worked miracles but didn't stop the jerks completely after a few visits to my neurologist & different combinations they introduced topirimate when I was 22 and it did the trick.
I have been completely seizure free for 5 years and been driving for 4 & planning on starting a family in the near future.
I honestly thought my world had ended when I was diagnosed but don't give up.. :)

Submitted by Kelly on

Hi Kelly,
It sounds like you have a powerful epilepsy story. We were wondering if you would be interested in becoming a media volunteer for Epilepsy Action? Our media volunteers are willing to share their epilepsy story in the press. Talking about your own experience is a good way to raise awareness and educate people about epilepsy. If you are interested in becoming a media volunteer, you can find out more information and apply here: epilepsy.org.uk/press/media-volunteer Or you could contact our media officer, Hattie, by emailing hhodgson-crome@epilepsy.org.uk.

Thank you!
Hattie Hodgson-Crome
Media Officer
Epilepsy Action
 
Tel: 0113 210 8882
Twitter: @epilepsycomms

Submitted by Hattie, Epileps... on

Hi Kelly,
It sounds like you have a powerful epilepsy story. We were wondering if you would be interested in becoming a media volunteer for Epilepsy Action? Our media volunteers are willing to share their epilepsy story in the press. Talking about your own experience is a good way to raise awareness and educate people about epilepsy. If you are interested in becoming a media volunteer, you can find out more information and apply here: epilepsy.org.uk/press/media-volunteer Or you could contact our media officer, Hattie, by emailing hhodgson-crome@epilepsy.org.uk.

Thank you!
Hattie Hodgson-Crome
Media Officer
Epilepsy Action
 
Tel: 0113 210 8882
Twitter: @epilepsycomms

Submitted by Hattie, Epileps... on

i have had epilespy since i was aged 16 i am on 750 mg of levercitaem twice a day but i was recently admited to hospital for another problem and i was having seisures every day so many seisures was i having that i needed sedating because of it is my epilespy out of control

Submitted by denise on

Hi Denise
It sounds like you’re having a difficult time. There are many reasons why the number of seizures you’re having may have increased. Here are some of them:

  • Your other health problem may have made them worse
  • medication you were taking for it may have interacted with your levetiracetam
  • You may have been getting less sleep or not being able to keep your tablets down because of this health problem
  • Your seizure threshold may have lowered for reasons unconnected to your other health condition

The important thing is that you are in touch with your neurologist. And that they are making some suggestions about what to do now. There is every chance that  the number of seizures you’re having will gradually reduce.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Cherry
Epilepsy Action Advice and Information team

Submitted by Cherry, Epileps... on

Hi, I was first diagnosed with JME after multiples seizures when I was 15 and intially prescribed Zonegran as my medication. Over time my jerks were getting worse and I had a few more sezuires so my 250Mg Zonegran a day went to 400Mg and then the max dose of 600Mg and then my doctor also began adding Lamotrogine on top of those current meds. I'm now 26 years old and I currently take 300Mg of Zonegran and 200Mg of Lamotrigine every morning and night and yet I still have the occasional jerks and ticks even after getting 8-9 hours of sleep every night and no drinking. I was wondering if there was any other medicine out there that might be better suited for my case or would it be best to just add another type to the ones that I'm already taking?

Thank You!

Submitted by Kyle G. on

Thanks to a story line now running on Eastenders, I now have a name for the type of epilepsy I developed 55+ years ago. I started to develop morning jerking when I was about 13. My grandmother was slowly dying at home and I developed panic attacks at the same time. I did attend hospital, but the letter sent by GP started with the information that my mother was neurotic so, apart from having blood taken, no tests were done and I was told I had a bad habit I had to learn to control.

I never succeeded, but the my sense of guilt and inadequacy grew and overshadowed my teenage years. My first seizure shortly after rising when I was 18 was diagnosed by the same GP as a catarrhal faint. I was so relieved no one realised it was my fault and tried all the harder to control it.

I still failed and 6 months later, shortly before bedtime I had another major seizure, luckily diagnosed by my GP's locum. At hospital, after an EEG, I was prescribed mycelin. This was a tad hairy as I was not given any advice and back then they had no printed information provided as routine, so I started on full dose - just two weeks before the beginning of teaching practice - which unsurprisingly I failed.

Eventually all was well and I was totally controlled for the next five years when my GP decided to try me without the drugs - again without weaning, just stopping full stop. A fit followed and I was back on the same drug, where I have been ever since. I am now 70.

In many ways I have been lucky. I have been fully controlled and have lived an active life free from the fear of fitting. I was lucky I went to a college that didn't discriminate - a student at another college a year later was simply chucked off the course. I was lucky no boy-friend was deterred (but then in many ways it was just an idea to them as I was so well controlled). However it is probably, I have been told, that the anti-convulsant was responsible for one of my babies dying shortly after birth, and quite possibly the miscarriages too.

I sincerely hope the attitude towards epilepsy is now better - even my own mother told me never to tell anyone, and a friend at college who was terrified of it refused to be anywhere near me after she found out. Hopefully Eastenders will help in that respect.

Submitted by Sue Young on

A few days ago, my daughter of 14 was diagnosed with JME. As I am sure is the case for all parents, we were (and still are) reeling from this news.

The diagnosis followed a single 3 minute seizure (which I now understand to be tonic-clonic) first thing in the morning a few weeks ago. We don't know what caused it as she was well rested. A followup EEG confirmed JME.

We have currently elected for no medication which the consultant also steered us towards to wait and see what happens. We've put in some safety measures but, of course, its all very frightening for us.

Whilst I appreciate that every story is different, it would be good to know what perhaps we can expect as most of what I have read seems to suggest that other symptoms such as the jerking perhaps should have come first - which is not the case.

Any help would be welcome.

Thank you

Submitted by Beverly Chapman on

Dear Beverly
It certainly is normal for you to feel concerned when your child gets a diagnosis. Hopefully as time passes it will all start to feel a little more manageable.

Epilepsy can start in slightly different ways for different people. The EEG sounds like it gave the doctors the most concrete information for making a diagnosis. But it will still be important for you to monitor what happens for your daughter. The specialist will find this very helpful. We have seizure diaries and could send you one it you felt that would be useful.

Here is our information about juvenile myoclonic epilepsy. Hopefully this will give you some idea of what to expect.

We have information too on the different seizure types. And a section specially for young people.

You might also be interested in the range of ways in which we offer support to people. This includes coffee and chat groups we have around the country. It can be really helpful to meet with other families in a similar situation.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

Cherry
Epilepsy Action Advice and Information team

Submitted by Cherry, Epileps... on

Just thought I'd tell my story so people don't think life with JME can never be normal. I was diagnosed with JME when I was 18, however I had been having myoclonic seizures for years before that. I just of course had no idea that the reason I would drop things are occasionally fall was because I was actually having seizures. I had a tonic clonic seizure in February 18th, 2011, and that's when I was diagnosed. Obviously I began to panic, as I'm sure you've been through. I really suffered with panic attacks, so petrified at the thought of having another seizure. However, I told myself this could be so much worse and I'm going to do everything in my power to control this instead of letting it control me. My doctor put me on 100 mg of lamictal. This seemed to control for the most part but I still occasionally had the myoclonic jerks. They up'd me to 250 mg and I have been faithful to it to say the least. I get enough sleep, period. This is all throughout school and now in my professional life. No excuses, I just do. It's something that I can control so I do it. I also don't drink very much, if I drink it's just a beer or two. But the amazing news is, except for the occasional mild myoclonic seizure.. I have been seizure free for over 5 years. I lead a normal life, I'm an accountant, getting married in a few months, I bought a house, and I have been able to drive for about the last 4 1/2 years without a problem.

Anyways, parents and those living with JME, just focus on controlling what you can and know that it's completely possible to live normally with JME.

Submitted by Haley on

Hi everyone,
I was diagnosed with jme early last year, at 21yo, after having a prolonged tonic clonic seizure and jerks after that.
Since then I've lost my job in the air force, my driving license and all my savings because I can't get a job. The epilepsy is worsening on a daily basis. I'm currently having 1 tonic clonic a month and up to 15 clusters of jerks every day, which injure me and make me exhausted all day. I've been on lamotragine, epilim chrono and keppra. None of which have helped. I'd like to know if there are ANY other ways to help with either finances or the seizures. Please help soon.
Faithfully yours.

Submitted by jack on

Dear Jack
Thank you for your message.

As you are still having seizures it’s important that you are seeing an epilepsy specialist so they can review your treatment and look at other possible reasons for your seizures to still be happening. If you’re not sure you are seeing a specialist, if you contact our helpline team with where in the UK you live, we will see what epilepsy services are available in your area.

We have general information on benefits relating to epilepsy. To see what benefits or other financial help you may be entitled to, it would be advisable to contact a benefits advice organisation.  They will look at your circumstances and see what benefits, if any, you may be entitled too.

If we can be of any more help or you wish to talk to someone about your epilepsy, please phone the Epilepsy Action helpline on 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane
Epilepsy Action Advice and Information Team

Submitted by Diane, Epilepsy... on

hello everyone,
i got my EEG reports and my doc said i have JME and i'm having minor attacks for seconds known as absence epilepsy
and I want to join gym... cause my doc neurologist suggested me to loose some weight.. according to me gym is the fastest and easy way so please suggest me should I do it or not?

Submitted by Shefali on

Hi Shefali 

Thank you for your question. 

Most people with JME have their seizures controlled with epilepsy medicine or they have a pattern to their seizures. For example seizures happen first thing in the morning or in the evening when they are tired. If your seizures are controlled, you should be able to use any piece of gym equipment. If you are still at risk of having seizures, or concerned about tiredness, there may be equipment that you shouldn’t use in order to avoid injury to yourself or other people. You could discuss this with the staff at the gym and ask for a safety assessment.

Regards

Diane

Epilepsy Action Advice and Information Team

 

 

Submitted by diane on