Does anyone here have JME?

[mdwb1026]

Looking for others with Juvenile Myoclonic Epilepsy to talk to.

[AmyBadd]

Yes I do. I was diagnosed aged about 14. Obviously hormone related triggers to my seizures as the first one came just a few days after my first ever period! Also has got worse during the course of my two pregnancies, But usually it is well controlled by Epilim Chrono (sodium valproate). I’m now nearly 34. So yeah, wow, two decades with Epilepsy...

[EpilepsyAction1 Partner Epilepsy Action]

Hi

I’m glad to see you’ve heard from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups epilepsy.org.uk/virtual-groups. We have our forum4e online community forum.epilepsy.org.uk/, and we are on facebook facebook.com/epilepsyaction and twitter twitter.com/epilepsyaction.

We have lots of advice and information on our website about things such as epilepsy diagnosis, treatment, first aid and safety that may be useful. We also have information Juvenile Myoclonic Epilepsy.

epilepsy.org.uk/info/diagnosis

epilepsy.org.uk/info/treatment

epilepsy.org.uk/info/firstaid

epilepsy.org.uk/info/daily-life/safety

epilepsy.org.uk/info/syndromes/juvenile-myoclonic-epilepsy-janz

Finally, please feel free to contact our helpline team. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Jess

Epilepsy Action Helpline Team

[Adlon57]

Yes I do. 'Celebrating' 50 years of the condition. A bash on head whilst at school. In the days when people seriously considered putting me into a mental ward, in 1970. Have tried most of the alternatives, now giving my epilepsy specialist advice what medication I should take. Now low alternatives, now am on Briviact and Vimpat, had one seizure, since inception of this mixture, in April 2018. Nasty condition, you are not always aware of the side effects, of the medications. Unfortunately NHS has lost my epilepsy records pre 2013, most of my known records have been collected via emails from a now retired Epilepsy Specialist Nurse over the years. Everybody with this condition has different reactions to particular medications, other medical conditions, always come into play. There are a lot of variations via where a patient lives, there families, financial situations, age, how many seizures, I have had over 400, but epilepsy is now playing second fiddle at the moment, my schwannomatosis at the top of medical worries. A local Epilepsy get together usually every month, is to be recommended, ask your GP, or look online, Epilepsy Action. Local support, bringing out little facts about Epilepsy, you can relate to, new friends with similar woes, maybe new medical breakthroughs? The old legends about the condition, can prove to be very rewarding, proving them wrong! I have a BA in history, a qualified Chef, and a proposed book in the pipeline, even if takes years to achieve them, I can definitely sleep better!