Juvenile myoclonic epilepsy

[JME93]

Hi there. My name is Hannah and I’ve recently been diagnosed with the epilepsy type detailed above. I really struggle with learning how to accept the myoclonic side of my epilepsy which involves me experiencing jerks in my neck and head, as I find it incredibly embarrassing when around others. Consequently I have social anxiety. Does anyone else struggle in the same way as I do? Any help and advice with this would be much appreciated. Thanks x

[Wintersbite]

Hi Hannah sorry to hear about your epilepsy I have tonic clonic fits myself and flashing lights are my main trigger but I do understand what you mean about how it's embarrassing and how you don't want to go out because of it but unfortunately that's not the answer I ended up turning it into a mind game I imagine my epilepsy as a little devil that I have to catch a lock away in a cage so he can't get me but I still haven't got the cage devil proof so sometimes he escapes and gets me ( these are when I have the fits) so now I have to put him back in his cage and upgrade the cage and start the game over again can I go 6 months, a year or more at the moment I'm winning the game my devil has been stuck in the cage for 4 years but my friend has said I make her laugh because when she tells me that I've had a fit ( and during a tonic clonic you can wet yourself and be sick so not nice ) I have actually said " damm now I need to put the devil back in his cage" I don't remember saying that but my friend said I say it alot and strangers asked her what that means and she explains the strangers then say it's a good way to look at this and the fact it comes out when I'm so spaced out says alot. Maybe you can try something like this to help you out and make it a bit more fun hopefully in time you can learn to laugh at the jerkin you get from the fits as it's always better to laugh than cry it makes you stronger and people can't hurt you as much if you don't let it bother you and you can joke about it yourself in a positive way.

Good luck hope this helps

[JME93 in reply to Wintersbite]

Thank you so much for your response. I like the way you label the epilepsy as a devil. Sounds like you are dealing with it really well. When I say I get jerks what I mean is not the jerks when I have a tonic clinic seizure, it’s the ones I get with a myoclonic seizure. It’s like a motor tic that people with Tourette’s get. It’s that which makes me embarrassed, but I think if I can laugh about it like you say then that will help. Also the fact that loads of people get twitches and do weird and wonderful things, so how is mine any different to what others do?!

Do you have tonic clinic seizures often? Are your meds strong enough? I’d like to be able to help you too if I can.

[Wintersbite in reply to JME93]

You have seen the point I was trying to make that's great my fits are normally yearly but I'm on a gap at the moment which is never a good thing next year would be 5 years without so I'm expecting all kinds of trouble when they start up again as they will come back as monthly or weekly during these gaps I've even had the pleasure of daily fits and I'm currently having a issue with my medication as in it can take up to 3 weeks before I get the correct dose because even though I order early to cover the time to get my script as I'm ultra hyper sensitive it takes a week from doctor to pharmacy and I give an extra week to make sure my meds are there but even that and I get manufacturing problems , don't have the brand, no other brands on script to substitute with, not on pharmacy records ( even though I have told and showed them a hundred times ) that I can't have other brands due to being ultra hyper sensitive, no notice . I'm getting annoyed with it and I just put in my repeate and my biggest dose got refused I'm half tempted to strike and I'm on twice a day different strengths but one is issued at 60 a month but the other is only 56 a month so I'm always short .

Don't worry about me I'm ok I just need to sort this out and then it's fine but new doctors always need braking in before they work well kinda like a good pair of shoes lol.

Take care

[EpilepsyAction1 Partner Epilepsy Action]

From: Epilepsy Action Helpline <[e-mail]>

Sent: 01 July 2020 19:10

To: QA <[e-mail]>

Subject: FW: New Epilepsy Action post: Juvenile myoclonic epilepsy

Hi Hannah

We hope you hear from others here.

It can be a shock to get a diagnosis of epilepsy and as you mentioned there’s a lot to come to terms with. The positive news with JME is that it’s likely you will get good seizure control once you have the right dose of epilepsy medicines. This will help to stop the jerks you are experiencing.

It can take a little while to get the balance of your medicines right though and like you mention linking with others and sharing experiences can help. There’s a couple of links here you might find helpful.

This is our information about JME: epilepsy.org.uk/info/syndro...

This is our information for people who’ve just been diagnosed with epilepsy: epilepsy.org.uk/info/newly-...

We know that it can feel embarrassing and upsetting when other people see you having a seizure. And it can help to know that you aren’t alone. We have some information for young people and links you might find helpful: epilepsy.org.uk/info/childr.... We’ve also just started a new young people’s website: epilepsyspace.org.uk/.

We also have some other ways you can make contact with others affected by epilepsy. Here are the links:

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

instagram.com/epilepsyaction/

twitter.com/epilepsyaction

You’d also be welcome to call us at the Helpline if you have any questions or want to talk things through: epilepsy.org.uk/info/suppor...

Regards

Mags

Epilepsy Action Helpline Team.

[SMF79]

Hi Hannah,

I have had JME since I was 14 yrs old. I'm 41 now. It took them forever to find a medication that controlled all the types of seizures I had. Yes, I was embarrassed (still am) by any of them if they happen in public.

I had not had any for more than 10 years until I had two at work... I'm a teacher. I hit my face on my printer and wound up with black eyes and a busted lip. The only good thing about that day is that my daughter and my partner and daughter were with me to help me.

It was a severe shock to be diagnosed with epilepsy. But it was a true blessing when they found the medication that finally worked for me. I very rarely have any ticks or tonic clonics anymore. You will get there too.

I don't think the embarrassment ever goes away because most people have control of their bodies and we were given that option for a little while and it was taken from us.

Really, we never had it. This was just laying dormant and waiting. But we had no idea. I know it's a lot, but you will be amazing at living with this. 😊