Newly diagnosed w/ JME

[AName123]

Hi everyone,

First post on here and a (relatively) recent diagnosis. It's been just over a year since I've been diagnosed with epilepsy at the age of 21 - specifically JME.

Thankfully I've only had one tonic-clonic seizure since the seizure that led to my diagnosis. The reason I'm posting here is how have people generally managed their seizures and what are some tips and tricks one can do to a) limit likelihood of seizures b) mitigate them if they happen. I'm taking my medication as instructed, as much of a pain as it first (and right now!) it feels.

Thanks everyone, any words of wisdom or if you want to share your experiences it would be of great help to me. I've only decided to post here after a year of my diagnosis as I am wanting to find out more about my condition and don't want to have repeat the awful experiences of my seizures.

Thanks everybody.

[GillyA]

Hi, AName!

I totally understand your worries and frustration, I too was diagnosed in my twenties (albeit a bit later). We all come to terms with it our own way, so I hope others here can give you experience too.

I’m fortunate and it sounds like you are too, the seizures are infrequent and, for me at least the meds seem to work.

I’ve found the key things are:

- first and most important, the epilepsy doesn’t change who I am, my interests, work aspirations and family are the same. The less I change my attitude and actions the less these will change.

- personally, most of the time I put my epilepsy in a mental ‘box’ ignore it and just get on with life. I’m not totally sure if this is the best way to manage it but it works for me.

- I’ve thought very carefully about how much I allow the epilepsy to impact my choices. For me I finally stopped driving all together about 10 years ago (I am sometimes seizure free long enough for it to be legal) but I decided the risks and disruption were too high.

- I didn’t rush into moving, but when I had to I made sure not driving was a key factor in where I live.

- Workwise, I have a great job and a good employer, it’s largely been fine.

I think one of the key issues is not allowing the risk of having a seizure worry you or embarrass you. I’ve found people are unfailingly kind and supportive, including complete strangers.

PS meds are, I’m afraid part of your life. I just take them as I get up and as I go to bed. Otherwise I don’t think about them. If you are finding side effects or impacts on your life too much, talk to your neurologist. All epilepsy meds seem to have an impact to a greater or lesser extent. Only you know if you are coping.

Epilepsy hits us all in many different forms, and I know some have it much worse than me, but I do hope you find your equilibrium. Good luck.

[Hidden]

I get it I was diagnosed after my first ever seizure in 2018 at 43, what I shock!! Frontal Lobal is mine, 9 seizures all together, for me timing my meds right 7am & 7pm reminders set everywhere lol drives me insane Alexa screaming at me. Touch wood that works for me, 3 years seizure free, full time job and driving again, I had the attitude drug me up n get me driving again, As a male I struggled with the independence and relying on others but you get there, wishing you all the luck on this journey x

[Angie140720]

Hi, I have had epilepsy a number of years which at first was not treated. I have tonic clonic seizures as well as absence seizures so for me I made lifestyle changes to try and avoid the big seizures as they were frightening and disruptive to life, feeling unwell for a few weeks afterwards while I recovered plus no driving licence. I changed my job to something less stressful, I work as a nurse and moved from intensive care to outpatients so more of a compromise, I work every other day so I can catch up on sleep as it's one of my triggers and I take my medication around the same time every day as well as trying to keep a regular bedtime and rarely drink alcohol, if I do it's only 1. Identifying triggers for me was important and I decided I do not want anymore seizures so I would rather have more balance in my life and try and control the epilepsy. I am lucky in that it has responded to this combination of medication (I have tried others first), but driving and being independent is important for me as I live on my own. Good luck with making your decisions on how you wish to manage with it, it's a bit of a journey!

[NicEllaDawn]

Make sure you don't miss a dose of you meds at any time, make sure you take them at regular times for example if your on them in the morning (pick a time between 6am and 9am that you can stick to every day) and in the evening as well (pick a time between 5:30pm and 7:30pm that you can stick to every day)! Also make sure you avoid stressful situations and flashing / flicking lights! As someone who has lived with epilepsy for the whole of her 36 years of life this is the best advice I can give you!

[apache31]

Gilly A's response is good. Also, don't stretch your waking hours. Get to sleep at a regular time to achieve as much sleep as possible. I'm in bed at 9pm and up at 630 every day.

[NicEllaDawn]

Apache31 is right sleep deprivation is a big trigger for seizures so always make sure you get a good nights rest every night of the week!