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 can have three types of seizure: myoclonic, tonic-clonic and absence.
Myoclonic seizures - These 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.
Tonic-clonic seizures - Two thirds of all people with JME have this type of seizure. 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.
Absence seizures - About one third to one half of children and young people with JME have absence seizures. These can happen at any time of the day, but you are most likely to have them in the morning. Absences last from 10 – 40 seconds.
In around four out of 10 people with JME, myoclonic or tonic-clonic seizures are triggered by flickering or flashing light (photosensitivity). Photosensitivity will usually show on the EEG if you have JME.
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 types of seizure, sleep and epilepsy and alcohol.
Diagnosis
It’s essential you give the doctor making a diagnosis 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, seizure triggers, and diagnosis.
Treatment
Many people with JME have their seizures well controlled with epilepsy medicines, particularly sodium valproate (Epilim). Sometimes lamotrigine (Lamictal) may be used. Other medicines, including levetiracetam (Keppra) and clonazepam (Rivotril), may also be helpful.
Epilepsy Action has more information about epilepsy medicines.
Prognosis (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.
Support organisation
Contact a Family
209-211 City Road
London EC1V 1JN
Phone: 0808 808 3555
Website: www.cafamily.org.uk
Because Epilepsy Action has not written this information, it is not produced under the terms of the Information Standard. Details of the Information Standard are available from www.theinformationstandard.org
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 2012To be reviewed November 2014
Comments: read the 17 comments or add yours
Comments
Hi all!! I'm Rhyn. I'm 24. I had my first JME Seizure at the age of 4. Diagnosed as Epileptic at the age of 8. Diagnosed as JME at 15. I'd like to tell you a bit of my experience in the hope that it gives mothers and those just diagnosed a bit of hope. As a child I used to fit weekly, and at one very bad stage it was every other day,. At the age of 10 they told us that I would never have controlled epilepsy, that I would never be able to go out unattended, I would never work, I would never drive, and that special school might have to be a consideration. They put me onlarge doses of Epilim (Sodium Valporate) which caused me to double in size very quickly. I was on Epilim for 8 years until I was 15 (fitting every 6 - 18 months) and then they changed my meds to Lamotrigine (Lamictal) and I became more stable. Fast Forward to the present day....I haven't had a seizure in 3 and a half years...I've worked since I was 16...I passed my driving test last year and half just successfully renewed my licence for a further 3 years...I went through Mainstream school and am now at University. As for the Epilim well, I have a HUGE ribcage which has been deemed to be the main side affect, for me personally,of that particular medication as it is a Steroid. I'm not fat, I'm not thin but have been told by many doctors and JME sufferers that I'm lucky I got off Epilim when I did. I am a success story. I don't have Epilepsy, Epilepsy has me. I'm getting married next year and we'vce decided that once weare married we're going to start trying for a child...this will be the biggest test for me and my JME and my fertility. This is where we see how badly the Epilim has affected me. I just hope it all goes smoothly.
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HI
I've been recently diagnosed with JME after suffering 4 large full body seizures in 3 years. I have had an EEG and an MRI scan. This has all happened whilst I've been at university, and I am now on 1500mg of Epilim (Sodium Valporate). I am very new to the whole epilepsy diagnosis, and despite one of my friend's mums having epilepsy I am very nervous with the concept. My most recent episode was the 17th March 2011, and I have just had my Epillim increased from 1000mg per day to 1500mg per day. I have also had conflicting instructions on when I should take my medication. My GP said I should take the tablets in the evening after my meal but my consultant at my hospital has said that I should take two tablets in the morning and one in the evening.
After reading what many of you have said about your personal encounters with JME I am uncertain where I stand but recognise a lot of what you have described in me. I have had full body seizures as I have mentioned before, but I also suffer from muscular jerks in my arms and legs on occasions in the morning, and I have also developed a twitch in my right eyelid since my first seizure. I also notice that some times I do have bouts of period where I will stare into space and go blank, I don't know if this is daydreaming or absences, because sometimes I go completely blank and don't take anything in that I look at or what is said to me.
I finally have to ask about my medication, I am not a small guy and being 21 and finishing uni this year, I am worried that the stress of exams and dissertation coupled with having to work in a bar will over ride my medication. Also I have found that I struggle to get motivated and am fairly lethargic. I can't say its since I began the medication but certainly in the last 5 months it has been the case. I have also noticed a fluctuation in my eating habbits, I find that half the time I am ravenously hungry and will continuously eat and other times I don't eat anything for a very long time. I have also gained about half a stone in the last half a year.
If anyone could send me some answers that would be really great as I am, despite asking my consultant doctor questions, still unsure as to what to expect from my diagnosis.
Thanks.
Hi Ben
This sounds a confusing time for you just now. The jerks and possible absences you mention are very common in JME. As you are still having them, it could indicate that your Epilim is not quite at the right dose for you at the moment. It can take some time to get the right dose of the right anti-epileptic drug, but hopefully, once your Epilim is at the right dose for you, things will be different.
In terms of your life style, sleep deprivation is one of the most common triggers if you have JME. Is there any way you could fit in extra time to sleep or even just rest? Also, for epilepsy in general, having regular meals makes seizures less likely. You say that sometimes you are hungry, and sometimes not. Is this because you feel sick, or does it just happen at random? If you could log any times when you feel lethargic or sick, or even the times when you feel particularly hungry that could help you to see if there’s a pattern emerging. For instance, if you feel particularly tired or sick within a few hours of taking your Epilim, that could give you and your doctor some guidance as to exactly when it would be best for you to take it. Your changes in appetite could be related to the Epilim, so if it’s a big problem, your consultant could see if there’s another anti-epileptic drug that might suit you better.
If you would like to discuss any of this information further, please call the Epilepsy Helpline freephone 0808 800 5050, or email helpline@epilepsy.org.uk.
Kathy
Advice and Information Services
My son has today been diagnosed with JME and started taking epilim 4 weeks ago this is after having had 2 fits in a 4 week period. He is 15 years old and due to take his gcse's this summer. He wants to try and get an electrician apprenticeship but we have been given conflicting information as to employment opportunities with epilepsy? Due to discrimination laws the JTL officials say will not stop him but his GP states the reality is he has no chance? All very confusing......
Is There Any Type Of Sugery For J.M.E
Hi JR
No, there is no surgery for JME. This is because JME is not caused by any damage to the brain. It is a genetic condition.
Kathy
Advice and Information Team.
My daughter (16) has had absences and clumsy attacks for years without us ever thinking it was epilepsy we just thought she was being a typical teanager but she has now had 2 full blown fits which happened in her sleep the last one in Noveber 2011 was bad and was out of it for a long time,she was given eplim 300 to be taken morning and night and just this week had a EEG done since taken the meds she has had no more absences or clumsy attacks but the doctor is thinking about changing her meds to keppra to a dose of 750mg which i think seems a lot since she hasnt been diagnosed with anything as yet. The neurologist seems to think its JMC. My daughter is not happy that she may be on these meds for life is there anywhere i can get some more info as our family has never come across epilepsy and im so confused about it all. Allison
hi, my daughter has just been diagnosed with JME. she has been suffering from absences and 'jerks' for the last 7+ years, but, i have allways been told she was 'naughty' or 'ignorant' etc untill i finally insisted on her being assesed properly, now she has been put on epilim for the last 3 weeks, although i am startin to see a small change, and improvement in her absences i have been reading everyones comments on here and im a little worried about the long term side effects. i was told the side effects could be weight loss, and hair loss, but its rare!! this is not what im seeing on here, can someone please advise me what to do for the best for her. she is 9 years old, she also has autism and severe learning difficulties. thanks
Hi Louise
All medicines have possible side-effects. Many people with epilepsy take Epilim and don’t have problems, but some people do. However, weight gain is a common side effect, rather than weight loss. If you are worried about any side-effects that your daughter is having, you could talk to your daughter’s specialist.
As you can see from our JME page, there are other epilepsy medicines that are suitable for this type of syndrome.
Advice and Information Team
HI there
I am a 21 year old female - diagnosed with JME at the age of thirteen. Haven't suffered myself with absence seizures but certainly myoclonic jerks and about 8 tonic clonics between age of thirteen and 17 & a half. So seizure free for three and a half years controlled on Keppra 750 mg in the morning and the same at night. I just wanted to share a mini bit about my experiences with the drugs I trialled etc and hopefully get a few responses to some of my queries also :) I was started off at 13 on Tegretol - personally had terrible side affects with no relenting after 6months or so (visual focal migraines and a tonic clonic and a lot of sickness) so about a year later after playing around with the dosing was weened off slowly and on to Lamotrigine. Had initial similar side affects which subsided about two months in. 18 months or so and a huge tonic clonic struck lasting around 40 mins until finally paramedics sorted the high maintenance me out and my poor understandably distressed mother! So doses were upped and then again another 18months to two years or so seizure free until another tonic clonic at which point I was weened on to Keppra to which I take still today - fingers crossed still controlled. However my biggest concern really, and question for you guys is that throughout your drug trial and error period how was the information you received? At the age of 13/14/15 admist all this upset of the making progress and then suddenly out of the blue big seizures would hit me again - upon seeing my consultant at the time I'd be told "Well you will go out and drink obscene amounts and burn the candle at both ends you kids!" To which my Mum being the great bean that she be would correct him with the knowledge that after every seizure occurrence (on average a normal school morning!) the paramedics would notify her that after my blood testing on each occasion the results would come back alcohol free and drug free as of course this was an option my parents wanted full proof of before sticking me on meds incase I was being a silly teen... But anyway with his negligence behind me and a new more helpful JME specialist in tow now I felt confident to present my latest most troubling concerns. The bouts of depression I have experienced without doubt since my earliest memory of one (being about six months long after the first ever seizure - of course in reaction to this new big life changing news and uncertainty) so I remained positive I would get through it. But my question is that am I alone in being a seizure free, fit healthy young lucky girl with a great job/family/friends/boyfriend (and new flat to which we now share) a full UK driving license as of passing me test last month) and yet still not a week goes by whereby I am not unexplainably polar in my energy/happiness levels. One minute I am feeling full of energy and joy and am often told by friends family colleagues etc that I have a big personality with a big heart. Yet inside I feel empty, hostile, cold and quite pathetic. Often very forgetful, scatty, clumsy, low immune system / energy levels / motivation levels - and really bitter about justifying all of these things all the time to colleagues/boss/friends etc especially as seem to have little evidence that any of this is normal/correlates to the epilepsy. Especially as I think being seizure free - people find it impossible to see a link and I feel paranoid that my boss as an example thinks its me using the Epilepsy card as an excuse... I've read a lot of articles just recently on the correlation between unexplained depression / bi-polar and epilepsy itself or the meds. Also found many a blog particularly from women complaining of this hostile 'Kepp-rage' they experience so feeling normal I mentioned all of this to my consultant with a open mind to hear his response. To which he told me was ridiculous - there could be no correlation between the depression and the drug as I;'ve been on it years and I would have noticed the depression within first four weeks - but of course I explained that because I was always flitting in and out of depression anyway I wouldn't have noticed it as out of the ordinary? So again asked is it proven/normal to be to do with my epilepsy as I have no big worries/stresses or factors in my life making me feel unhappy. I feel quite confused and at a loss with it all. He told me to see a therapist (previous experiences helped short term - then it all returned again with no warning..) so I am sceptical that this really is all the information he can give me? He mentioned I should see if I'm bi-polar and ushered me out the door whilst mumbling I am here to get you seizure free. I've achieved that so the rest is for your GP. UNHAPPY - feel stupid! Luckily my GP is great and now getting the cogs moving for me to hopefully find out whats occurring but I just wondered if any of you have similar experiences?
I am truly sorry to waffle on!! Been a long time since I've really expressed it all so it's all come flooding!!!
Wishing everybody here and their affected family members good health and positivity with wearing the epilepsy trait - it's tricky and unfair at times but we're all together with it!! :)
Hi all. My daughter has just been diagnosed with possible JME but the consultant does not want to start her on any meds until the frequency of seizures is known. As she has been viewed fitting when sleeping in the same room as friends and family i find this impossible to monitor if she has fits every night or has only had the 3 witnessed. Monitoring equipment is extremely expensive. My question to you is is there any foundation or scheme that rents the monitoring equipment out to people cheaply. I feel useless at the moment as my daughter does not want me to sleep in her bedroom to check on her and who know s if i may sleep through as she is not very noisy when fitting ????
Hi Leah
It’s difficult isn’t it? If your daughter has JME she’ll perhaps be at an age where she’ll want her privacy. At the same time it’s worrying for you not knowing if she needs your help.
As you can see from our website information, JME usually responds well to epilepsy medicine and usually returns if the medicine is withdrawn. It may be that your daughter’s specialist wants a definite diagnosis of JME before they give her treatment. You could ask if there are any further tests she could have that can help with the diagnosis. This way once she’s been prescribed epilepsy medicine, she may not have need of an alarm.
We are aware of an organisation called Turn2us. They can do a grant search and their database has details of over 3,000 charitable funds that offer welfare grants. We aren’t aware of an organisation who offer seizure alarms for rent. However, you can find details of manufacturers who have seizures alarms available on the Disabled Living Foundation website. Perhaps you could make some enquiries with the manufacturers.
I do hope you find an organisation that give grants.
Rosanna
Advice and Information Team
Hi all, i just wanted to say a brief description of my epilepsy and then ask a few questions. I have had JME since i was 16, i had myoclonic, tonic clonic and absence seizures. The tonic clonic seizures are pretty much controlled as im on 600mg of lamotrigine although i still have the other seizures. I have 2 children and my epilepsy was horrendous through both pregnancies and uncontrollable. I am now 26 and just starting to go out more for nights out with my friends. I just wondered if anyone has any experience of seizures due to flashing lights and drinking alcohol. Thanks, Mel.
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.
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
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.