Juvenile myoclonic epilepsy (JME)
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/
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
Twitter Updates
Epilepsy Action blog
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.
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.
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?
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
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?
Thank you for your comments.At least i know its not just me who feels like this. Many thanks.xxx
Over the past few months or so my 13 yr old has been dropping his breakfast bowl or the games console control usually within an hour of getting up in the morning probably once or twice each week. He explained it as his arm had a jerking movement causing him to drop things. As he had a bang to the head last year i had him referred to a specialist who thoroughly checked him over and concluded that it was not epilepsy. I had never seen the jerks until last week when on one occasion he dropped his breakfast plate on the floor without realizing it had happened. Both his arms jerked very noticeably for seconds 2-3 seconds. I have made another appointment for my son as after reading many of the comments on the internet it sounds like he has JME. I found the experience very scary and like all the parents that have posted their experiences, i too are so worried about his future and wondering if , in anyones experience, the seizures progress to the Tonic Clonic type seizure. Thankyou
Elaine,
I fully understand how worrying it must be for you at this point. You have no answers to what might be happening and must feel very concerned about your sons future and health. I am 36 now and started having Tonic Clonic seizures when I was about 14 after experiencing some strange events myself, where I was sure, something had happened I would wake up in odd places, the bathroom or in the kitchen, but very quickly I,d be back to normal within 10 minutes or so, although i would feel quite tired afterwards.
At first people weren't sure if I was being honest, or wether this was just another eloborate way of getting out of school. At 15 I had a grand mal seizure and we went to see a specialist. He confirmed I had Juvenile Myoclonic Epilepsy. My mum was very upset by this and was very protective over me, though I was difficult to control as a teenager ( possibly because of this over protectiveness). By the way I remember my dad having these myoclonic jerks himself, usually in the evenings, and I think he still does, he is a real character and works as a Quantity surveyor, with a Bsc degree he has worked on building things like the MI5 building in London. Although it is difficult not to worry about your son ( I have a 13 year old daughter) my only advice is not to panick and DO NOT wrap your son in cotton wool. I have a very normal and happy life, I work full time for the local council, and live on my own in my own house. The key is support and encouragement, which I do get lots of. your sons teenage years will be difficult enough.
Medication today is excellent and controls seizures very very well and the key is to take it regularly. I have been a fool to myself at times and have taken my medication quite irregularly, resulting in frequent seizures. Despite this, my life goes on. I walk to work every day, pay my mortgage every month and still enjoy nights out with my friends (if I do drink a bit too much I just have a lie in and take it easy the next day).
I find that stress and worrying about having seizures, tends to make them worse, so try not to fuss too much and protect your son as this may make him anxious, especially as teenagers can be a bit this way out it will help him if your son can enjoy as normal a life as possible. It doesn't sound too serious at the moment, and I would trust the specialists view for now.
My epilepsy was not as a result of a bang on the head, though I have had many since, and this hasn't done me any harm and I am still happy and outgoing. I don't wish to sound flippant but even when I have had a seizure (often due to not taking my medication) and someone asks if I am OK, I have been known to reply "Yes, no harm done, fortunately I landed on my head".
Today we must not worry, and just need to get on with life. of course epilepsy is worriying but we have other things we need to focus on as well. And as a teenager your son will surely have lot more to focus on over the coming years.
Love to you both
Jamie.
my daughter was diagnosed with epilepsy when she was 6 months old she is now 8 years old she is being treated with lamical and ethosuximide 6 months ago my daughter began to have jerking movements upon falling asleep this starts active from the feet up to her shoulders it slows down about 5 minutes later although you can still feel the jerking now and again through the night just before waking the jerking becomes very active again this happens each night . she recently had a sleep deprived eeg which came back clear since she has been 6 months old all her eeg have came back clear including her mri during this sleep deprived eeg my daughter started the jerking it was not picked up by the eeg the consultant told us this was non epileptic movements however my daughter had a overnight stay in the hospital recently the night time jerking was witnessed by a consultant on duty he said this was little sezuires a part of her condition im confused as to if these were sezuires why was i told they were non epileptic moves i really want to see a neurologist as my daughter has other problems with her knees and joints also with her balance does anybody have any ideas what this could be rolandic epilepsy has been ruled out
My Son was diagnosed with Myclonic jerks when he was 16 years old, every morning he would drop his breakfast or his cup. He was put on a low dosage of medication. A couple of years later his whole body used to drop to the ground, he used to get very upset as by then he was working and felt very embarrassed. I used to cry for him and was always nagging him, " have you taken your tablets". The doctors eventually found the right dosage of Epilum as he had put on lots of weight due to the medication. He is now 30 and has only this year come off his tablets, he lost lots of weight so his medication was cut down till now it has stopped..
I know how every mother whos child has this condition feels, but please don't give up hope.Some children CAN come off the tablets.
I completely echo earlier comments from people with epilepsy. I had my first tonic-clonic seizure the day after my 22 birthday and was diagnosed with JME shortly thereafter. I was at university at the time in the full swing of late nights and enjoying myself. Initially I felt I had to change my lifestyle completely, but the anxiety this caused probably did more harm than good. I took Lamotrigine for a while but became extremely lethargic and drowsy. I now take Keppra twice a day and in all honesty, I rarely forget it, it has become a part of my routine like brushing my teeth! It is no trouble to take it at all.
I am now 27 and live alone 3 hours drive away from my family. I have a full time job working shifts and am studying part time for an MSc, I go out with friends, drink moderately and generally push my body as far as it will go. If anyone tried to tell me I couldn't take those risks I would be upset and quite probably angry. An angry teenager is the last thing you will want, as they are less likely to comply with medication regimes. The key it to ensure that your child knows how to maximise the wider supportive environment in which they can choose to take risks. Any other teenager is allowed to begin making decisions for themselves and so should any teenager with epilepsy. Anyone with epilepsy is merely that, they are not defined by the disease, an neither should any decisions about their lives be.
Best wishes to you all xx
Reading all the comments from parents of children with JME makes me realise what mine must have gone through with me. I was diagnosed at 13 and now 24. I have always held out hope that i would grow out of it but unfortunately this has not happened (yet!? lol). My parents always have (and always will) drill into me about sleeping patterns and alcohol. As much as not being able to drive, drink freely and go to bed whenever i feel like it cause me a lot of upset and anger its not been the end of the world. I've gone through uni, got a job i love and still live my life to the full - so what if i cant get drunk...who really needs it!? and so what if i leave a little earlier than everyone else on a night out - not the end of the world. Ofcourse you can well do without it and i get very angry at times but what i would say to parents is dont look at things too bleakly, you can only give your children as they approach the "going out age" the best advice-it is up to them to test the boundaries and learn the lessons (i did and its whats made me more sensible now). Try not to wrap them up in cotton wool it only serves to make your child more angry at the whole situation and feel like they're out to prove they can cope and they'll be ok - leads to sure downfall. All easier said than done and it took my mum a long time to be able to step back a bit and allow me to make my own choices. The longer you have JME the more in tune with your own brain and body you get and when this happens you know what are the most sensible choices to make - trust your children to do this.
Sarah
This is the first time I've ever been to this site and read about others experience's. I was first diagnosed with JME at the age of 9 and I am now 30. Like alot of other people I was told that I would probably grow out of it. I've now come to terms with the fact that this is not going to happen and I will more than likely be taking medication for the rest of my life. I am currently taking a very large dose of Keppra and Zonisamde but still I suffer with grand mal and petit mal seizures. Sometimes in the past I have ended up in hospital due to injuries caused but I can count on one hand the amount of times that this has been the case. Most of the time I come round don't know where I am or who people are for a little while and then I tend to get upset as I realise that I've had a seizure which I find frustrating hence why I get upset. All I want to do then is get into bed and sleep for ages. I sometimes feel as if I've run a marathon or gone 10 rounds with Mike Tyson. My parents have come to realise now that I am an adult that they cannot tell me what to do with my life and that sitting me down and lecturing me about how staying up late and going out drinking alcohol when I should be getting an early night and not changing my daily routine just goes in one ear and out the other. My mother especially used to wrap up in cotton wool and I know that they say these things because they love and care for me and to see me have a seizure must be the most scariest thing in the world for my parents to witness. As an individual I know my body and I know my own limits. That's part of being a human being. I have regular meetings with my consultant and my GP. I have a fantastic support network and I make sure that all of my friends and work colleagues are aware that I suffer with epilepsy. Maybe one day I will be able to drive, have children but I'm happy with my life, I have a full time job a fantastic boyfriend, a great family and the best friends. I do get frustrated but I would guess that everyone gets frustrated with something somewhere along the line, don't they?
How wonderful it is to read your stories and realize I am no alone. My son was diagnosed at age 12 and is now 15. The longest we've been seizure free is 4 months. He seems to take it in stride most of the time. He plays baseball and basketball and loves watching football. I am a bit concerned as he is not as social as he used to be. His friends seek him out often, but he does not initiate much. I feel that I am often "bugging him" about getting together with friends and getting out more. My husband and I have always been very open with him and he knows we are hear to listen and help him with any concerns and fears he may have. I'm not sure if this is just a typical teenager or if the medication he is on (Keppra) is causing him to be unsocial. Apathy is definitely a side effect from which he suffers. I would appreciate any advice!
Hello Everyone,
First I would like to say that I truly enjoy reading the comments and not feeling so alone. My daughter was diagnosed with JME last year at the age of 12. She was having the staring spells and then had a major seizure while sleeping and vomited all over her self and never knew it. It was very scary even though i am a nurse. I kept thinking she can't have seizures, not my child. But she does, she has had good results from the medications and no seizure activity that we know of, but she has some major anger outburst and trouble with work at school. Have any of you dealt with these issues? Thanks for reading.
Hi, Thankyou to everyone who has added to this site. There is some great info on here and it helps to know there are others in the same predicament. Everyone seems to know somebody with epilepsy, but they all seem to be really well controlled by their drugs. My son (now 19) developed absence seizures at 10 yrs and then developed full blown seizures at 17. He has tried Epilim, Lamotrigine and is now on Ethosuximide and Keppra 1500, twice a day. The seizures are becoming more frequent and he has had three this week.
We try not to be neurotic parents or wrap him up in cotton wool, but it is hard to carry on as normal e.g. having to make sure all his friends know what to do, for him not to be on his own etc. It's good to hear other people get through this and can carry on as normal, but it seems really hard at the mo where he hasn't really been able to move from child to adult and become established. He had to give up on his A levels due to memory and concentration. Work is a problem, because he is obviously quite a liability in the eyes of employers, and even our frinds who know and love him are reluctant to offer him jobs such as baby sitting etc.
It feels as though it is an emotional roller coaster at the mo, not knowing when the next seizure will be, or if he will injure himself. He has hit his head quite badly on several occasions. He also vomits profusely after a seizure which is very distressing for him and not nice for other people who may be around.
He was found having a fit in town just the other morning, the paramedics etc were great and they gave me confidence that there is help out there, and that they soon realised that he wasn't a drunk, or taken illegal drugs.
We would love to hear from other parents who are facing the same emotions and how they have coped. When the seizures were further apart we used to get over it and the seizures faded into the back ground, but with them happening so much we don't seem to have got over one before the next one happens. Any advice would be greatfully received. We are due to see his consultant next week.