Juvenile myoclonic epilepsy (JME)

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

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 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 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.

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

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

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