JME epilepsy- anyone else? Juvenile myoclonic epilepsy

lynnb53

Hi everyone I have a granddaughter with JME and I wonder if anyone else has a teenager with this form of epilepsy

Pippa_Alumni

Hi @lynnb53, and a warm welcome to the community!

I'm tagging in @FeatherMask who has mentioned juvenile myoclonic epilepsy on the community in the past, in the hope that the two of you will be able to connect.

FeatherMask

Hello @lynnb53,

I hope your granddaughter is feeling alright, I am also a teenager with JME. If there's any questions you'd like answered or advice I would be happy to try to lend a hand. I'm also very open to share my personal experiences with epilepsy if it may help someone.

lynnb53

Thank you my granddaughter is not good at the moment she has only been diagnosed 18mths and at 14years old she is finding it very difficult to adjust also she has been on two now starting her third medication and she is still having fits and rages so any help /adivicewould be gratefully received x

FeatherMask

I was diagnosed when I was about 15/16 and I am now 20 and seizure free. I do still get some side effects, like seizure scares, dizziness and migraines.

I won't lie, it is very difficult. When I got my epilepsy I had to go through a lot of medication before I finally got settled on Sodium Valporate and Keppra. Switching medication is very trying because you're exhausted, physically and emotionally from the side effects. It's really important to be understanding and be there for her.

I understand that school will be quite difficult for her especially exams etc. But please try and get as much help from teachers or anyone you can to help her study and to help her feel less stressed, at her age that is a priority. I did not do well at school at all and it was due to my epilepsy, I would hate for the same thing to happen to someone else. However, I did manage to get a room to myself and extra time in exams to reduce stress.

Something else to understand is that it will be incredibly hard for her as she is now different to her friends, and as a teenager that's probably one of the worst things, it makes you very vulnerable. Going out will be difficult and she will have to make a lot of compromises. Eventually you and her parents will find ways to do things so you are less worried about her and she is safe. I advice getting a medical bracelet and setting alarms for her tablets. I also had a baby monitor in my room and the other end in my parents room, so they could hear during the night if I had seizures. (Which I absolutely hated).

In the end in all comes down to acceptance, she may have to chop and change her life, but JME doesn't define her, although some days it might feel like that. I struggled a lot because I couldn't accept something was wrong with me and wouldn't talk about it or ask for help. You can't make her feel better but you can be there.

There's a lot I could say so if you have specific questions or she wants to talk to someone who has been through the same experience I am more than happy to help.

lynnb53

Thank you for your comments we try as a family to be supportive but it can be hard when she constantly rejects any help and gets very emotional including verbal aggression at the slightest thing hopefully thus next change of meds will help I hope you are OK 

FeatherMask

Do you know what, that was exactly what I was like. I was very angry. It does make you feel like a walking time bomb. I ended up having to see a specialist that helped deal with epilepsy and anger. 

lynnb53

We have an epilepsy consultant but we have not been referred for ant other help yet