also known as Janz syndrome
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with JME) need to take AEDs for the rest of their life, as it is common for seizures to return if the medication is withdrawn.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 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.
Because this page is written by an epilepsy healthcare professional and not by Epilepsy Action, it falls outside the requirements of the Information Standard. This is why the Information Standard logo is not shown on this page.
This information is exempt under the terms of The Information Standard.
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Updated July 2009To be reviewed March 2012
Comments: read the 19 comments or add yours
Comments
I don't personally suffer from JME but my new partner dose! I've been trying to research it a bit just so I no what to expect if she has a fit while we are together. I've red lots of peoples comments on hear an other websites which have been very helpful so I no the signs to look for now but I can't find anything on what I should do if she dose fit! Is there anything I should do for her during or after?, or should I just call an ambulance straight away? Any info would be good no matter how little! Many thanks x
Hi all
I am a 32 year old woman and was diagnosed with epilepsy when I was 11 as soon as puberty hit I got another effect. I have had both tonic clonic seizures and also absence seizures though it hasn't been until now someone has said to me that I have JME baring in mind I have been under a neurologist since I was diagnosed. Initially I was placed on Epilem (sodium valporate) but as with so many people my weight increased and I became lethargic and I did not heal well. I was then transferred over to carbamazapine which seemed to be helpful. I have been trying to convince neurologists for years that the seizures that I have are triggered by the change in my hormones that my monthly period brings my seizures are more likely to occur either before during or just after my period. I was most surprised that no-one seemed to take this into consideration an unexpected occurance helped to convince my neurologist when I approached my GP regarding contraception, I was advised to try the contraception injection depo-provera and when I started taking this my seizures decreased along with the heavy periods that I suffered with. This did not reduce the absence seizures but these are much easier to cope with. This was all changed again when becoming pregnant with my son. My neurologist reduce the levels of tablets and changed them from the carbamazapine to lamotrogine which during pregnancy seemed to be working. A warning to anyone who has JME and is pregnant, although my pregnancy was relatively calm birth was a whole different story. even though I had been put under the special care of the hospital I was encouraged to have a natural birth. When contractions after 24 hours were finally confirmed I had just started pushing and had a seizure my son was dragged out as his breathing was constricted and in doing this my personal area has been obliterated and has never been the same since. Thankfully my son was resussitated and ended up ok even though I have no memory. I have just had my daughter and for 8 months I have been saying to the maternity unit that I insisted on a ceasarean birth, and they finally agreed and this I actually remember and was completely successful. My daughter is 6 months old and I have have just been place on Keppra I have never been on this medication before and have never had such a definate diagnosis before I was just told I have epilesy now they have told me I have JME hopefully now some progrss can be made. For all those that I have just been diagnosed do not let the doctors rule you ask questions no matter of your age, this is your body and make sure that your parents understand that you are the one this is affecting and it is you that needs to understand, although do not be rude they are struggling too. It has really be a breath of fresh air to hear everyones stories and realise how like my own they are.
Marie
I don't know if this helps but your story seems similar to my own. Myoclonic jerks etc & no one listening to the fact that you think the seizures are also linked to time of month because there is no set pattern. As I have grown older my periods have got heavier & heavier yet I am still officially too young to be perimenapausal. At last a very understanding GP has fitted a mirena coil - no periods and a distinct lessening in frequency of seizures. That of course is only ok if you feel you've finished having a family but is imediately reversible if you want to have more!. Oh and another thing have you ever been prescribed frisium for the jerks it worked for me but I realise all people are different
Christina 4th September
What! No periods? Gee, how did you get so lucky?
My name is Rhianna, I am 13 and was diagnosed at 9 years.
I had a fit this morning. Me and mom have JME. Moms on Frisium, Rivitrol and Keppra morning and night.
I am on Keppra, Toparimate and Rivitrol morning and night.
For all the ladies who mention that the jerks are worse at their time of the month... it's obvious from the numbers being reported that this is true - even if "experts" don't believe it.
At the time of the month, your "hormonal" sleep is restless, disturbed etc, with research confirming it.
Janz is linked to sleep and waking up.
So if pmt affects your sleep - and Janz is affected by sleep, then bingo, that's the link.
So yes, you will be affected, it's blatently obvious, to all women who suffer with painful periods, that wake them up and they take painkillers to get through the night.
But alas, beyond the comprehension of "experts".
So listen to your body, not the experts. You'll know if you're affected. And you might be affected for several months or most months.
And to the experts reading this - for goodness sake, if PMT etc affects sleep, and the body thermostat, then of course it's highly probable to affect the Janz too.
DUH!!
I am 43 years of age. I was diagnosed at the age of 15. My Neurologist was one of the few who actually listened to what I was saying, and when I explained that, yes, my epilepsy seemed to be worse at my time of the month and, yes, my periods were very painful, he referred me for a hysterectomy. Unfortunately the doctors would not do this as I had no children, even though I assured them that I didnt want any, so when I fell pregnant at 26 it was a realistic idea to have the "op". So I went into hospital to give birth and the first night I was woken to feed my baby daughter...and....bingo!!!!!, I had a massive fit and ended up black and blue. It was only then that it was suggested by the doctors that I have the hysterectomy that I had wanted for years. It makes sense to me. take away the periods, take away the epilepsy.....
Since I had my Hyterectomy 16 years ago, I have had only a few minor fits brought on by lack of sleep or stress, and I have now been clear for the last 12 years.
So, I agree and feel that I am proof that periods do affect epilepsy, and I agree, take notice of what your body is telling you, not so called experts. The simplest answer is most often the right answer.
I was diagnosed with JME when I was 16. I have not had a seizure or myoclonic jerk in three years. I lost health insurance and had to go off my meds about 9 months ago. I have not had one jerk or seizure, despite many late nights, early mornings, and few nights of drinking. Is it possible that I have grown out of JME? I'm 22 now.
I suppose the best way to find out is get and EEG, but I'll have to get health insurance first!
Hi guys,
I wanted to share this with you all after reading some of the posts regarding links to female hormones and epilepsy. My wife who has had epilepsy since the age of 13 was completely seizure free during her pregnancy with our son. A couple of days after birth the seizures returned... we have always maintained there has been a link between her cycle and the onset of seizures.
I appreciate that everyone is different and this may well not work for everyone, however, it was suggested to us that the contraceptive implant or Implanon as it is known in the UK releases progesterone which is a hormone that increases a lot during pregnancy. My wife had this fitted a few weeks after giving birth and has since been seizure free. It is obviously not a cure but we feel it has helped balance the hormones and together with good sleep etc may be a help to some people.
I believe there are also progesterone creams that can be bought however i would certainly do your own research and perhaps check with a doctor. If this helps then great and please pass it on!
Best wishes.
My 13 year old son was diagnosed three years ago with absence epilepsy. He was successfully treated with Zarontin for three years. Becuase he was seizure free for two years, his neurologist wanted to wean him off meds to see if he had outgrown the seizures. We did this over the Christmas holiday. Shortly thereafter, he started having, what we now know are myoclonic seizures. He was falling sevearl times every morning for about two weeks. Because he also suffers from neuromuscular disease, we thought the falls were a result of his progressing neuromuscular disease. About three weeks ago, after a series of myoclonic seizures, he also suffered a tonic clonic seizure and we learned he has "graduated" to JME. My question is, has anyone ever tried Zarontin to control myoclonic and tonic clonic seizures? I know that Zarontin is not supposed to be used to treat those types of seizures, but how did it keep my son's seizures completely at bay, only surfacing after he stopped taking them? We are now taking Kepra, 2500 mg a day and having pretty significant behavioral consequences. We are now trying B6 suppliments to see if that will help, but would much rather try going back on the zarontin. Any thoughts?
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