Some of you will have seen from the Iceland_in_Hospital threads that they’re doing tests on me for epilepsy and it’s pretty much of a given now that I have it. Now I find out my best friend’s boyfriend has died from an epileptic fit.He had pretty much the same symptoms as me,fits getting worse until he had a final grand mal.He was 27,I’m 25.Now I’m wondering what to say to her and how to deal with it.
Him dying is bad enough,but now I’m worried in case the same things will be happening to me.I want to let her know how the tests are going,but it might bring up the memories for her or make her worry she’ll lose me too.
I’ve been told it’s incredibly rare to die from this,but it’s still a bit too close to home.I want to look out for her,but I’m worried about what’ll happen to me too.
Any advice would be gwatefully received 
With regard to your fears, my anecdotal evidence is that everyone I’ve known with epilepsy from the time of my childhood to my current geezer status has lived well into their geezerhood.
This does not include a few children I was aware of while Deb worked with MRDD kids, but they tended to have multiple problems, their epilepsy was often trauma related, and their deaths involved heart attacks and similar odd combinations of problems.
I am not promising you a long life: you will probably be struck by a meteor, tomorrow. The odds however, tend to be in your favor. I hope it works out for you and that your docs can find an appropriate medication that does not make you feel worse than the siezures do.
With regards to your friend: simply offer condolences for her loss without bringing up the issue.
When (I suppose rather than if) she raises the issueof your health, simply tell her your current status without any embellishments. Neither minimizing your situation nor enlarging upon it will change her reaction at this time and may cause problems regarding the perception of truth, later.
Thanks.Whilst I have been made better by knowing that the epilepsy won’t do any lasting damage,I am now seriously worried about this meteor.When and where will it strike,so I can avoid it?
You cannot avoid it. It will strike you or not as the universe intends. *
- (With an appreciation for Fritz Leiber and his spiders and snakes.)
It’s vanishingly rare to die from a seizure, and those who do often have other confounding factors. They fell and hit their heads on something, or had a heart attack or an aneurism during the seizure, stuff like that. (BTW, “epileptic fit” isn’t the accepted English term any more. It feeds too many misperceptions of epilepsy. The preferred term is seizure.)
Try not to worry too much about your symptoms getting worse. If they’re just now testing you, I’d guess you’re not on medication yet, and it will take a while to get effective levels of your meds in your bloodstream. It’s probably going to get worse before it gets better, but for most epileptics it does get better. Besides, physical and psychological stress often make epilepsy symptoms worse. That means you’ve got to eat fairly healthy, get plenty of sleep, try not to overdo, and manage your stress and worry levels. Fretting about dying during a seizure is just going to make it more likely for you to have more seizures, which is just going to make you worry more.
And hey, I’m almost 29, and I haven’t died from a seizure yet. My mom’s 53, and she ain’t dead yet. My great aunt is…well, she’s gotta be pushing 80, and she’s still kicking. Odds are you’re going to be fine.
My Dad had a seizure problem that was absolutely controlled by meds. He made it into his seventies and might have gone farther except for a series of heart attacks.
Luck to you in getting it under control.