Epilepsy, driving & lifestyle

Bernice101

I would like to share experience with others whohave epilepsy. I’m 35and was diagnosedlast June after a second grand mal seizure in two years. I had absence seizures during this time also,but didn’t know it was epilepsy. Cannotdrive for a year, so was let go from my job as it requires driving and workingalone in sometimes stressful situations. I was under a year in the job and on a specific contract, so I had to letthe job go, was p***ed about it and try not to think about the lost earnings.

Anyhow, I could go back driving next June and wantedto know how others with epilepsy adapt to driving. I’m aware of forum charter and am not lookingfor advice on meds, but rather on lifestyle. I’m writing here because my GP isonly human and her experience with epilepsy is one removed from the conditionitself. If I have a few drinks –say 4beers - a late night or am stressed out I sometimes stammer or have slight absenceseizures the next day. Is it like thisfor everyone? Do others ever feel a bitlight headed after a late night? I know such things are triggers and should be avoided,but a sleepless night and stress are sometimes unavoidable.

If this [occasional absences] is not normal ill needto have a chat about meds with my GP. I knowthe law states that I cannot drive for 6 months after any type of seizure, andmy conscience would never allow me to do so, but it seems very hard not have abad day. Does this mean I can neverdrive again? I just don’t know what is “normal”for people with epilepsy who drive - although I understand its different foreveryone. I would never drive until I knowI’m safe to do so.

I’ve been lucky enough to be able to work for my sissince June but don’t know how I will manage when I do get another job. It is normal to sometimes to go to work a bittired, such is life. How do others getaround this? I live in rural area, so busno option. And frankly I’m p***ed of at notbeing able to live my life as I want to.

Fuh Q

Hi, I dont have epilepsy but my son does. He too suffers from absent seizures, He has sleep deprivation epilepsy which is hard to deal with because he has difficulty sleeping, he needs his rest and sleep but cant sleep, he is now suffering with depression and self harming and has attempted suicide twice.
He feels useless and thinks he has no future as nobody will employ him.
He has had to change his medication due to side affects but may have to change again, he feels its a vicious circle and is getting nowhere.
My personal opinion is that epilepsy is a devastating condition and I highly admire people who manage it and live as normal a life as possible.
When my son was diagnosed with epilepsy at 14 a piece of me died, and another piece dies every time he has a seizure, he is now 19 and as bad as it sounds I sometimes wonder if he would be better off if one of his suicide attempts was successful, it kills me when he has a seizure and falls forward onto his face, I will never forget the sound of his head bouncing off the floor nor will I for get the pools of blood when he breaks his nose or splits his head open.
If I could take his epilepsy I would do it in a heartbeat. I would do anything to stop his suffering.

I understand your situation but my opinion may not want to be what you want to hear, If I had a seizure I would never drive again. I think its too risky, even if you dont have a seizure for a couple of years and are legal to drive you are still at a high risk of having one in the future.
Everyone is different and thats just my opinion.

deecee1

Hi Bernice

My fiance has epilepsy since he was 9 and is now 32, unlike yourself he never had a period of time he was seizure free long enough to get his drivers license. Adjusting to not driving is frustrating. It has influenced our lives in ways we live in the city centre because its close to transport links , etc. Like you he used to be worse after a few drinks. He was having anything from 2 to ten seizures a night. Hopefully you'll be one of the 70% of people who become seizure free on medications. If your still having absent seizures you may need to have your medications adjusted. Sometimes it can take a bit of tweaking to get the meds right. As for my fiance he was born with an abnormality in some of the cells in his frontal lobe called cortical dysplasia. He had surgery in London in August and the histology showed that this particular abnormality was extremely resistant to medication. He was never going to get seizure control on medications alone. The good thing is he's now seizure free for 4 months, the longest period since he was a child. There are no guarantees but things are ticking along nicely. My fiancee was the same with triggers, lack of sleep, to much alcohol and stress. He tried accupuncture for a while that helped with the stress and sleep, didn't hugely improve his seizure but helped his well being.

Birdsong

Bernice

I too have epilepsy, have had it since 12 years old, and became control on medication with one seizure in 2009 and had to give up driving.

It was my understanding at that time that you had to have to be seizure free for a full year before you can go back driving, and if you are getting absences at the moment, i really don't think you can drive next June. Sorry if that seems harsh, but its not just you on the road - there is everyone else as well.

Once I accepted what were my triggers, I avoided them, alcohol, late nights, night clubs but it was a small price to pay & life really can go on without them.

While it probably is easier without a car in an urban area, I find when I go down home friends are more than willing to pick me/drop me - they understand i have a genuine reason for not driving.

I would also suggest giving Brainwave a buzz, they have fantastic Nurse Specialists who will go through all your options with you. I found them great, and there is nothing they haven't heard of before