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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 informaiton 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 24 comments or add yours

Comments

Hi Mel,
I'm 30 and was diagnosed with epilepsy at age 16 and with JME aged 26. For me, alcohol and lack of sleep used to trigger grand mal seizures or myoclonic jerks, usually occurring the next morning. This was while I was at uni, probably over-doing it and on oxcarbazepine which turned out to not be a suitable drug.
Now I'm on lamotrigine and haven't had either type of seizure since 2009 though I still go out regularly. I always just make sure I can have a lie in the next day. Having a bit of a hangover has never led to a seizure for me, but the combination of a hangover and being tired and having to get up or go out has. I learned some time ago that strobe lights give me a really bad headache so I just avoid places that have them.
I've had myoclonic jerks since age 14 or so, but didn't have grand mal seizures til I was 16, at which point I went to EEG and MRI tests. I've never had an absence seizure though.
Good luck!

I wondered if anyone had any advice on being on lamotrigine during pregnancy? My GP and neurologist have both said there's a trade off between the likelihood of seizures and the likelihood of defects but I'm not at a stage yet where I am actively thinking of a family and therefore haven't approached them yet. Thanks.

Submitted by Sara on

Hi,
Most women with epilepsy have healthy pregnancies and give birth to healthy babies. Current research suggests that lamotrigine, taken at a dose of less than 400mg per day, carries lower risks when taken during pregnancy than some other epilepsy medicines. For more detailed information about the risks of epilepsy medicines taken during pregnancy, you could contact the UK Epilepsy and Pregnancy Register.
Freephone: 0800 389 1248
Website: www.epilepsyandpregnancy.co.uk

You can find lots more information about epilepsy and having a baby, including the risks of taking epilepsy medicines during pregnancy on our website.

I hope that helps.

Amanda
Advice and Information Team

Submitted by Amanda@Epilepsy... on

Hi everyone I don't have jme but my girlfriend was diagnosed with it about 2 and a half years ago. I thought I'd share her story (with her permission of course) so that anyone newly diagnosed can see passed it and help them get on with their lives.

My girlfriends name is Robyn and she was diagnosed 2 and a half years ago when she was 16 she was staying at my house and I noticed that she had shown signs of myoclonic twitches (not at the time but I know what they are now) and then she had a full tonic-colonic seizure. From then on she twitched nearly every morning and they were really bad, causing her to fall over. She also had tonic-colonic seizures once a week. She has since been to around 6 neurologist appointments and goes every 6 months now. She first starts on lamotrogine which stopped the tonic colonic seizures but didn't stop the twitching. After explaining to the doctor she was slowly taken off lamotrogine and put on 500mg of epilim (sodium valproate) once a day then after the next appointment 500 mg twice a day and she now only has tonic colonic seizures once every 6 months and she is still waiting for other appoints to assess how well epilim is working. Just remember that it is a case of trial and error so don't expect results straight away and keep at it.

For those who have been told they can't work but want to don't be down heartened while Robyn has been going through this she has been finishing off an apprenticeship as a HAIRDRESSER... With epilepsy I'd say being a hairdresser is a pretty hard job to persuade yourself to do.

To drive again you have to be seizure free for one year in England and Wales and you can then apply for your licence back or a new one. You will be put on a limited one but if you carry being seizure free they will assess it and more than likely put you on a normal licence.

There are a few things that you can get help with as well. One being free bus travel, all you have to do is have a letter from the dvla saying that you have been declined a licence on medical grounds and get a form from Gmpte and send them off. You can also get discounted rail travel just do the same and speak to national rail to get a disabled persons railcard. You will also receive free prescriptions just speak to your GP.

I hope Robyn's story, as simple as it is helps get rid of any doubt that any newly diagnosed people have.

Submitted by Thomas on

Hi, me and my older half sister both suffered JME, both started at the age of 7, both is from hereditary epilepsy from our mother, but both completely different, where my sister had severe epilepsy having all types of epilepsy and combinations of those types, having multiple fits, and heavy medication to try and control her fitting, before she was 7 she was highly intelligent advanced for her age after starting JME and being so severe she developed brain damage, and now at the age of 45 is mentally disabled and still severely epileptic and on lots of medication, My experience was completely different, i also started JME when i was 7 but only 1 type sorry only know the old name Grand mal seizures and only mild never more than 5 in 1 year only at night when i was sleeping, and never more than 1 in 1 night, i eventually grew out of my seizures 12 years later and being a child with a severely epileptic sister, i refused medication because i was scared that i would end up like my sister, luckily our family doctor was very sympathetic, and agreed to me not taking medication on the basis that i would take medication if my seizures increased, i had a fit during the day, or more than 1 fit in 1 night, i touch wood i never did, i am writing this to hopefully help others and so they understand that everyone is different and also there seizures and how it impacts there lives, i lead a normal life i drive go abroad do everything anyone else would although i have some restrictions still i have to renew my driving licence every 4 years and when i go scuba diving i can not dive lower than 30 meters apart from that nothing stops me

Submitted by caroline73 on

I have this to the point where it controlled my life, I couldnt go out drinking or i'd have a full blown seizure the next day, I rarely made it into school on time as i'd be having the mini jerks for hours, I had to have over 9 hours sleep to have a chance of getting up, and I started to get them all throughout the day. Eventually my doctor put me on keppra and they stopped instantly, i've not had one single mini jerk or seizure since and can even go out drinking, definitely the best drug out there

Submitted by beth22 on

Hi really worried about my son he is twelve a few months back his head started twitching occasionally now there getting more frequent mornings after school and evenings whilst he's Sat relaxing , also in his sleep he is having spasms, we have been to doc and referred to hospital does this sound epileptic or toreettes??, Will he be ok as there getting more frequent sorry for loads of questions doc asked if we had family history my cousin has epliepsy my side mum, and other son has learning disabilities, but son getting jerks and spasms is relatively well had few bouts of sickness lately , he possible dyslexic really struggles with reading and writing , thanks for your time

Submitted by jo hunt on

Hi

It is a worry isn’t it, especially when you don’t know what you’re dealing with? It’s possible your son’s symptoms could be epilepsy, but the symptoms of epilepsy can be similar to many other medical conditions. This is why it’s important to wait for a diagnosis, so your son will get the right treatment.

If it is epilepsy his doctor will put him on epilepsy medicines to try and control the seizures. We have some information on our website about [symptoms] of seizures and [treatment] of epilepsy. http://www.epilepsy.org.uk/info/seizures http://www.epilepsy.org.uk/info/treatment/anti-epileptic-drug-treatment You might find it helpful to read these pages through.  

You mentioned that it’s possible your son also has dyslexia because he has reading and writing problems. We aren’t aware of any link between epilepsy and dyslexia, but some people with epilepsy may find they have reading or writing problems. Children who have seizures during lessons can miss essential bits of a lesson. We have some information on [epilepsy and education] if you feel this would help. http://www.epilepsy.org.uk/info/education

If there is anything that you would like to discuss further, you could speak to one of our trained advisers on the Epilepsy Helpline 0808 800 5050.

Rosanna

Advice and Information Team

Submitted by Rosanna on

Is it possible to have focal partial seizures with JME? I was diagnosed with JME last year after my first tonic-clonic and I have myoclonic and absent seizures every day, but on a number of occasions I've experienced really intense temporal lobe-like seizure symptoms.

I should probably note that I've had severe depression and anxiety for a number of years and only gave up hard drugs last March.

Submitted by Russell Tyrone Jones on

Hi Russell

Focal (partial) seizures start in a small area of the brain and may, or may not spread to other parts of the brain http://www.epilepsy.org.uk/info/seizures/focal-partial. In JME seizures experienced are generalised seizures that affect both sides of the brain at once.  This doesn’t mean that someone couldn' t have focal seizures as well as JME http://www.epilepsy.org.uk/info/syndromes/juvenile-myoclonic-epilepsy-janz.

It would help your doctor if you kept a note of, for example, what symptoms you have, how you feel and how long they last. Then, when you next see your doctor you can discuss your symptoms with them.

Rosanna

Advice and Information Team

Submitted by Rosanna on

I have JME and sometimes when I'm having a turn, my left arm goes partially numb, sort of like pins and needles but not quite as uncomfortable. However my left arm has been like this basically non stop for the last 3-4 weeks with varying degrees of severity. Is this related at all to my JME?

Submitted by Gary Grice on

Dear Gary

The symptoms of epilepsy can be similar to many other medical conditions. Therefore, it would be advisable to discuss your symptoms with your doctor, especially as they have lasted so long. It would help them if you kept a note of, for example, what symptoms you have, how you feel and how often, and how long, they last.

Rosanna

Advice and Information Team

Submitted by Rosanna on

I've just been told that I have JME. I have between 8-30 myoclonic jerks a day. I was wondering if I will be able to drive, as I turn 17 at the end of the year

Submitted by L on

Hi

I appreciate it’s not what you want to hear but if you are having myoclonic jerks you wouldn’t be able to drive. This is because myoclonic jerks associated with juvenile myoclonic epilepsy (JME) are generalised seizures. When someone has generalised seizures it affects both sides of the brain. When seizures happen on both sides of the brain your consciousness would be affected, even if it was for a very short time. So having myoclonic jerks would make it unsafe for you to drive.

However, on a more positive note, many people with JME have their seizures well controlled with epilepsy medicines. So, once you’ve been 12 months seizure free you can apply for your provisional licence and learn to drive. You can find more details about [epilepsy and driving] on our website. http://www.epilepsy.org.uk/info/driving

I hope this helps.

Rosanna

Advice and Information Team

Submitted by Rosanna on

I have been diagnosed with JME since I was 23, though when looking back I had been having myoclonic seizures since early teens but thought everyone had them. I am one of three daughters with no sign of JME or other epilepsy in my family history. My niece has been diagnosed with JME as well. I have four daughters with my third daughter just being diagnosed with Autism, she is 11yrs old and just starting puberty. Do you think there is a link between epilepsy and autism?

Submitted by Lydia on

Hi Lydia

Some types of seizures can run in families and juvenile myoclonic epilepsy is one of these types. However, this doesn’t mean that it will affect everyone in the family. You might find it helpful to read our website information on epilepsy and inheritance. http://www.epilepsy.org.uk/info/inheriting-epilepsy

In answer to your query, there is some recent research to suggest that there could be a link between epilepsy and autism. This information can be found in our online members magazine called Epilepsy Today. http://www.epilepsy.org.uk/news/news/epilepsy-and-autism-link-discovered

Rosanna

Advice and Information Team

Submitted by Rosanna on

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

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