Breakthrough Seizure After 10yrs - Shocked and Uncertain - What do I do?

[JayArch]

Hey everyone. So I'll cut to the chase - I grew up with generalized epilepsy in my teens. Had a mix of focal and tonic clonics throughout the ages of 11-18. Then bam - nothing. Off meds - started to learn to drive - partied like a 20 something year old does and continued on with my life.

Over the past 18months I've been under more stress than someone my age should be. I've been through legal battles - both my parents died leaving me and orphan at 26 and one of my best friends took his own life. Yeah. Sucks.

Anyway about 6 weeks ago I was out having breakfast with friends and I had a huge clonic tonic - fell - split my head open - stitches, the lot. Scans were all okay but the doctor reckoned that the accumulation of alcohol, late nights and the recent tidal wave of grief and stress just caused this seizure.

Regardless. Medically I'm back to square one. I feel lost (especially without my father who was a rock throughout this in my teens). And constantly slightly anxious that it'll happen again.

I'm being put on Zonisamide. 30mg gradually increasing to 300mg daily. I've been reading reviews and it's 50/50. Some swear by it! Others say it ruined their life - with one of the main side effects being brain forg and extremely low mood (this is something I seriously can't afford to have as I'm trying to better myself and get out of this grief pit).

I'm thinking of not taking it - I'm thinking of trying it and seeing how I go - I'm thinking this was just a breakthrough seizure and it won't happen again?

My question: What do I do? Is the likelihood it was a breakthrough seizure higher than the likelihood of a return of epilepsy? Is my risk dramatically decreased by taking the meds? I feel lost and uncertain and any help is greatly appreciated!

Love x

[GillyA]

hi Jay, I’m so sorry to read this, I managed over 7 years and then as you say, wham…..

Meds are ready difficult and a personal choice. I do think you can scare yourself, reading the side effects. it’s always open to you not to take them or alternatively if you decide to take them and the side effects are too much get in touch with the provider to help, they are likely to try something else. Sadly finding a med is very much hit and miss.

I’m now on keppra and lamotragine. When they added in lamotragine I had an awful couple of months, but got through it. After my seven years seizure free I had 4 in 18 months, ended up in hospital and one time had to have plastic surgery to repair my face.

I have a very public, tough job with a lot of worldwide travel and my employer was loosing patience as I had a lot of time off while things sorted themselves out. For me, getting the meds right has resulted in no seizures for now 14 months. On my part I’d rather take the meds and have no seizures, but we all have to make our own decision.I do hope thing re stabilise for you and keep your fingers crossed for me.

[JayArch in reply to GillyA]

Thank you so much for this - insight into someone else journey is always greatly appreciated

[what24 in reply to JayArch]

Dr's? "Scans were all okay but the doctor reckoned that the accumulation of alcohol, late nights and the recent tidal wave of grief and stress just caused this seizure"

It's worth collating data and verifying the nature of your seizures & any factors which seem to have an influencing factor, yourself. No Dr, of any discipline, has a fraction of the amount of time, personal interest & knowledge you'll accumulate, of factors which could be having an impact. I.e. I'm a pedantic, run of the mill science based graduate; took Dr's +4yr's to even start to accept factors I'd accepted throughout, were critical I.e. Precise periodic timing of my szr events

At the same time, if you're experiencing full blown seizures, I'd trial those medications recommended. Wouldn't be concerned about raising an issue with the Dr, if the side effects do seem horrific, or the medications, fairly hopeless and perhaps something else needs to be trialled.

And finally? Use the system. Have to admit I've always been an individual who's always given 110%, stood alone. Typical story that I'd never claimed a penny in benefits, with nice (true) stories of both PLC & Local Gvt Directors pleading with me to stay! But just as I've always been quite comfortable gaining that margin/return on behalf of an employer? Gaining that margin/return on behalf of yourself is worth the effort, those £'s to help to pay for water, gyms, buses, trains, legal aid, reduced camp site fee's or whatever, are well worth the effort. Helps to cover the costs while you're sorting stuff out

[Joab3]

sorry that you’re going through this. I’d encourage you to try the meds. You might find you get on fine with them. If you don’t, then you can weigh out the pros and cons of trying without whilst being esp mindful of lifestyle factors and self care. I hope things settle down for you as you’ve been going through such a tough time!