Epilepsy?

Hello,

This is mainly to call out any epilepsy sufferers. I was diagnosed with frontal lobe epilepsy in Jan 16. From having a seizure everyday, its massively reduced. I've not had a seizure in 4 months and suddenly had one today.

How do you cope? Are you free from seizures? How long did it take before they completely stopped?

Just feeling very down and upset about it, I thought I'd never have one again. Any help/advice would be lovely. Thank you. :smile:

Bump

Last try. Bump. :emo:

Reply 3

Kindred

Original post by Anonymous

Last try. Bump. :emo:

Hey there. I don't have epilepsy, but I've seen a few posts on here about it. Don't get yourself down cos nobody replied yet. People aren't on here every day.
You may also be able to find a forum on another site for epilepsy if you're interested.

Oh and good luck getting used to things after your new diagnosis. It must be tough finding out big news like that :smile:

Reply 4

queenhan

Hey! I'm sorry no one has replied to you until now! I completely understand what you're going through. I have a form of generalised epilepsy called juvenile myoclonic epilepsy so I experience three different types of seizures (tonic-clonic, absence & myoclonic), plus I'm photosensitive! I was diagnosed in 2009 but had it a few years prior to that- my parents used to tell me to stop doing that funny thing with my eyes, which we later were told by the doctor that the fluttering & staring etc was actually seizures! My seizures are in no way under control and are quite severe. I have about 80 absence seizures a day, roughly 40 myoclonic seizures a day and a tonic-clonic once a week to every 10 days.
Just because I've been through this doesn't mean you will at all!!! I know that focalised epilepsy is soooo much easier to control because it only affects one part of the brain. If you make sure you're looking after yourself by getting more than enough rest and eating healthily and trying not to stress yourself out, you will prevent further seizures. Try to avoid alcohol too, minimal amounts are okay (a glass) but especially if you're on medication, not a good idea. The most important thing is to make sure you stay positive though, never let it get you down and don't let it define you as an individual. I completely understand that you've just been diagnosed but it's not the end of the world- you could have worse things and actually we're very lucky, because it's completely invisible!!
Surround yourself with friends and family - as this is near enough a huge change for them as it is for you. I'm a musician so my escape is playing the piano, playing in bands etc- get involved in your hobby! Getting away from the world and being in your own zone can make you forget about epilepsy. I go for walks also- make me feel energized and lift my mood!!
Seeing as you've only been diagnosed your epilepsy is probs up and down at the moment too so it will take some trial and error to get it under control. I hope that this helps you and I hope that everything works out for you. Pop me a message if you have any other questions! You could also try contacting these charities if you need more information: Epilepsy Action, Epilepsy Research, Young Epilepsy, Epilepsy Society. These charities helped me tonnes when I was first diagnosed and still support me now. Good luck! :smile:

Reply 5

chibikuma

Original post by Anonymous

Hey, I know I'm a little late to this thread but I really wanted to reply because I've been through the same thing. I was diagnosed with JME epilepsy a week before my exams last year, I had the normal couple months of seizing whilst getting used to the medication and stuff. Then about 5 months after my diagnosis I started to stop having seizures and like you I was seizure free for 4 months. I was ecstatic about it. Then randomly I had a seizure one morning. I was really depressed after it, and I actually lost a lot of my confidence. I actually became a lot more paranoid about my epilepsy, the accuracy of the drugs etc. I didn't really think I'd get back to feeling care free about my epilepsy again. However, I kind of just dealt with it the same way I did when I got my diagnosis: acknowledging it and strive to make it a condition I could live with. It was really **** at the beginning because I was wary all the time. But the way I coped with it was just by taking it day by day. Eventually I had past those paranoid months and was feeling normal again, then I passed the 4 months, then the 6 months, and now I'm on nearly 9 months. It's a really *****y thing when you relapse, you lose a lot of your confidence, but you just have to try to persevere through. And then hopefully you'll get to that 4 months and maybe further this time. As I said, I'm 9 months seizure free and I didn't think I'd ever get to that. I hope you're doing well and your epilepsy is well controlled now!

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