Any others with Epilepsy on here

[sharepointalex]

As per the title really - any other folk on here have/been diagnosed with Epilepsy? I got diagnosed in April after my second generalised seizure. Turns out i'd been having 'simple partial seizures' for years - we assumed they were just ticks!

I've now been prescribed Lamotrigine and am currently titrating it up to a dose 200mg per day. I can't really say whether it's working or not yet but early indications look good.

I've had to surrender my driving license and been told I have to have 12 months free of all seizures which sucks :-(

The not driving is proving difficult - bought a new BMW 335d not long back which is now sat on my drive (thankfully the wife can drive it) and I have my Fireblade sat in my garage which can't be ridden.

On the plus side I've got into cycling which is taking my mind off things a bit.

Anyone else been through the same thing and come out the other side? i.e. returned to driving?

Cheers

Alex

[dai1983]

I had petit mal as a kid but had grown out of it by 13 after also using medicine.

My brother is 17 years older than me and I remember him having violent seizures when i was young. I've even got a scar on my eye brow from his cortina dashboard when he wrote it off and had his license taken away in the mid eighties.

He started driving again in the early nineties and hasn't had a fit in 20 odd years. Not sure if he still takes medicine or not.

[moorx]

Yes, I was diagnosed with photosensitive epilepsy around 30 years ago (when I was at school).

I was prescribed Sodium Valproate, which I still take - although the doctors thought I might 'grow out of it'. No such luck.

I didn't sit my driving test until I was 27 because of having to surrender my licence a couple of times before I'd even passed (in those days, you had to have two years seizure-free before getting it back).

My epilepsy was well controlled until about four years ago, when (for complicated personal reasons) I was forgetting to take my medication regularly. I had a seizure at home, and had to surrender my licence again for a year. This time, it was a little more difficult than previously, because I live 125 miles away from my workplace Although I don't commute this distance daily, I still had to do the journey on a twice weekly basis, plus my daily commute of 15 miles each way. This was achieved through a combination of trains, taxis, family and friends. Fortunately, my employer was also very good to me, and allowed me to work from home a day or two per week. Nevertheless, it was a long year!

I have now had my licence back for a while, and will have to apply for a new one in November (the reissued licence is only valid for three years). I need to look into the process for that, as I'm not sure whether the DVLA contact me, or I have to contact them.

[hal 1]

Yes, diagnosed about 1995, had a grand mal in my sleep, woke up in hospital with a banging headache and a sore tongue
Took 18 months to get my licence back, since then I've had a couple of other lay offs re driving, the Last one I wasn't driving for 3 1/2 years !
This was due to medication problems, so please be aware of any side effects you might suffer from, mine ranged from aggression to paralysis which was caused by low blood sodium levels.
Take care
Hal

[sharepointalex]

Hi Guys,

Bit of an update on this for those that are interested or also suffer from Epilepsy - hoping for some moral support!

It's been nearly 6 months now since I had to stop driving - the first 3 or 4 months were very tough, both coming to terms with the diagnosis and not being able to drive, also trying to overcome the feeling of getting jealous whenever I was being driven around!

I've taken up road cycling as a new hobby and got very into this so that has helped loads - without it I think i'd be very grumpy and depressed!

Have suffered with depression on and off and anxiety as a result of the epilepsy but that seems to be getting better now.

Been put on Lamotrigine which didn't seem to be working - got to 200mg a day and still having small partial seizures. Epilepsy nurse and consultant advised to keep increasing - now on 350mg a day and fingers crossed it seems to be starting to work, with fewer seizures and slowly feeling better.

Hopefully this is a sign of things to come! I had really hoped they would be controlled by now - the prospect of waiting 12 months from my last seizure and not knowing when that will be is not filling me with much joy to be honest!

Be grateful to hear from any others on here who have been through the same and come out the other side!

Thanks,

Alex

[FlyingMeeces]

Hey up, no driving specific stuff from me but I know there are at least a couple of PHers with epilepsy, I expect they'll find the thread sooner or later. Fingers crossed that you're now in that seizure-free period that'll get you back behind a steering wheel.

BUT after a friend had a very very narrow squeak, worth saying: please be extraordinarily careful if you like the odd bit of booze - having more than a couple of drinks can drastically lower your seizure threshold and set all sorts of nasties off. It seems that people don't always get told this when they're diagnosed, or it gets lost in the snowstorm of leaflets and information and advice. Speaking of seizure thresholds - high temperatures lower it, making it easier/more likely for you to have a seizure, so it may well be worth eg seeing if your GP will do you a flu jab, as a dose of the flu, high temp with it, and consequently a seizure or 3 would be a right stter if you were otherwise on the right track - much more so than for someone without epilepsy.