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Juvenile myoclonic epilepsy (JME)

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also known as Janz syndrome

Epilepsy Action is indebted to Dr Richard Appleton, a Consultant Paediatric Neurologist who specialises in children’s epilepsy, and to Dr Rachel Kneen, Consultant Paediatric Neurologist and Dr Stewart Macleod, Specialist Registrar in paediatric neurology, at Alder Hey at Alder Hey Children’s Hospital, Liverpool, who have kindly prepared the information on this page.

This is a fairly common type of epilepsy which can develop between eight and 26 years of age, but usually starts between the ages of 12 and 16. It usually affects girls more commonly than boys.

Symptoms

There are three different types of seizure which can occur in this sort of epilepsy.

Myoclonic seizures

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

Tonic clonic seizures

Two thirds of all people with juvenile myoclonic epilepsy will also have this type of seizure. These usually happen in the morning within one or two hours of waking up. This type of seizure is more likely to happen if the person has been to bed late the night before, or has woken up earlier than usual.

Absence seizures

About one third to one half of children and teenagers will also have absence seizures. These episodes can happen at any time of the day, but they most frequently occur in the morning. The absences last from 10 – 40 seconds.

Photosensitivity (which means that the myoclonic or tonic-clonic seizures are triggered by flickering or flashing light) is common in people with JME. Photosensitivity can usually be seen in the electroencephalogram (EEG) of people with JME.

Diagnosis

A full and accurate history is very important in diagnosing this type of epilepsy. It is important to tell the doctor who is making the diagnosis about any myoclonic or 'jerk' seizures – even if the doctor forgets to ask about this type of seizure.

An EEG test will also be very helpful in making a diagnosis, as this type of epilepsy is associated with some specific EEG patterns. The EEG will usually show whether the person is also photosensitive.

Treatment

Many people with JME respond well to anti-epileptic drugs (AEDs), particularly sodium valproate (Epilim). Sometimes lamotrigine (Lamictal) may be taken. Other drugs including levetiracetam (Keppra) and clonazepam (Rivotril) may also be helpful.

Prognosis (outlook)

Most people (about eight out of every 10 people with JME) need to take AEDs for the rest of their life, as it is common for seizures to return if the medication is withdrawn.

As seizures are more likely to happen if a person does not get enough sleep or drinks too much alcohol, it is advisable for people with this syndrome to maintain regular sleeping habits and think carefully about the amount of alcohol they consume.

Support organisation

Contact a Family, 209-211 City Road, London, EC1V 1JN, telephone 0808 808 3555, http://www.cafamily.org.uk/

‹ Generalised epilepsy with febrile seizure plus (GEFS+)upLandau Kleffner Syndrome ›

Comments

Thank you. My daughter has been treated for seizures since age 6 she is now 16. They started as petite mal triggered by strobe/sun light. Just recently she had a major seizure while taking a shower and after another EEG she was diaognosed with JME. This is the first site that has given me what I feel is some valuable information. Is it possible that she may outgrow these seizures? Her nuerologist said she would by the age of twenty or thirty, but I've seen alot of sites that state the this is a lifelong issue.

Submitted by Paul Raposa on 25 March, 2009 - 23:10.

Hi Paula,

I know that you posted this in March so hoping you pick this up.
I was diagnosed with JME when I was 18 and was also told by the neurologist that I may grow out of it - I'm now 27 and still have to take medication to control it - I learned this the hard way when I had a grand mal seizure whilst on holiday recently.
I think the advice on it is conflicting as some people do grow out of it and others don't!
My advice would be to keep seeing the consultant and really be careful in the next few years as in the next couple of years she will start going out on the town and, for me, late nights and too much alcohol is what triggers it.

Hope that's useful.

Submitted by Ceri Talbot on 19 June, 2009 - 16:06.

Hi my son got diagnosed with jme in may last yr. He was 10 at the time. I have never been so scared its horrid to watch your child have a seizure and go blue. He was on epilim but gained so much weight(nearly 3 stone) that he is now on keppra. He has not had any fits since being on medication but im still finding it hard to let him out and i definately wont leave him on his own. It is starting to eat me away. I am constantly thinking about when he gets older and wants to go to the pub and all that. Im terrified in case something happens to him.what if he is on his own and has a seizure? Has any other parent been through this?

Submitted by joanne west on 24 June, 2009 - 13:30.

Joanne,

I know exactly what you mean. My daughter was diagnosed when she was 10, she is now almost 15, her seizures were under control until about December (it was almost 2 years since she had her last one). Unfortunately she has had 5 seizures since then. She seems to take them all in her stride - it is me who is the one finding it hard to cope. She goes out with her friends on her own - I made sure they all know about her epilepsy. She also has a epilepsy bracelet which might not help when she is on her own but gives me a 'bit' of peace of mind. You can't wrap them in cotton wool, there are times when you are not going to be there. This happened to me the other week when she collapsed in the kitchen and I was in the shower. Fortunately she didn't hurt herself but it did cut me up a bit. I always say that when she has a seizure it is like the very first time all over again. You never get used to it. One thing that has always stayed with me is the Epilepsy nurse asking me when I last seen anyone taking a seizure - I replied that it had been years ago. She then told me that the drugs for Epilepsy are so good nowadays that that is the reason you very rarely see anyone taking a seizure - they drugs control it so well.
I think every parent thinks the same as we do

Submitted by Karen on 28 June, 2009 - 19:18.

My son was diagnosed with epilepsy in February last year. He is nearly 9 years old. At the moment he has been having a few more petit mals after being fit free for over a year. He takes Epilim. I think he may need his medication at a higher dose but have been waiting for the hospital to get back to me. At the moment, he keeps asking whether he can go out with his friends over to the park opposite our house. I am so protective of him and find it really difficult to even leave him on his own. The doctors also tell me he could grow out of it as he gets older but I am finding it hard to be optomistic. Do other parents feel the same?

Submitted by Sarah Davis on 29 June, 2009 - 01:02.

Thank you for your comments.At least i know its not just me who feels like this. Many thanks.xxx

Submitted by joanne on 30 June, 2009 - 09:58.