Epilepsy! Anyone out there?

[Dean Winchester]

Along with a few other related problems I’ve recently been diagnosed with epilepsy.

Not sure of the type yet, I still have to have another test or so, but they do know I’m having some type of absence seizure, odd for a bloke in his 30’s from what I’ve read. They gave me some meds (not antiepileptics at the moment, anti-psychotics) which has just sent me through the roof seeing flashing lights and having flickering vision when I wake, last night I actually woke up because it looked like there was a searchlight flashing through my window needless to say there wasn’t.

I’ve come off them as they were making my seizures far worse and pretty scary.

So as the title says is there anyone else out there in MAP world who suffers from this condition?

Any tips on management etc?

Cheers

[embra]

Very sincere sympathy. Epilepsy is a complex not well understood condition, surrounded by a lot of misunderstanding by people not informed about it, who make rash judgements.

My friends' son suffered very badly form a severe form of epilepsy.

I am not knowledgable enough to offer real advise, but I can offer these minor crumbs.

1) be very rigorous about taking the prescribed medicines. I have known people with a variety of neural disorders who filched on their medicine (because they didnt like the side-effects) and suffered. However it does sound like your diagnosis and subsequent medication still requires some work.

2) make your friends and family as aware as possible about the symptoms and subsequent management.

3) there are a variety of treatments which seem to offer some help for some people with differing conditions e.g. vegus nerve contol operation (I am not in a position to explain this any further). As Epilepsy is essentially a disturbance of neural-electrical activity, some forms of meditation may help with dampening and partially regulating the electrical activity - but check this out with your neuroscience people.

4) although complex, difficult and misunderstood by the mass majority; epilepsy is a neurlogical condition. The science of neurolgy is making advances e.g. parkinsons disease is making significant progress in treatment now, so my suggestion is to read up on neuroscience, and watch out for unusual reputable research groups who may be able to help further.

Sorry I cant be of any real help.

[Atre]

Embra's stuff is solid advice.

I would only add to beware of confirmation bias, if your epilepsy treatment fails to work out (no reason to think this at the moment, it is very normal to have to run through a few sets of meds before they find the ones that work for you - especially if they've yet to give you a final diagnosis) then there is a fallacy whereby doctors tend to refine the current diagnosis - they assume that the first person to give you a diagnosis must have been certain. When they should in fact be going back to the drawing board and making a new diagnosis.

I'm only mentioning this because neurological stuff can be tricky, I have no reason to doubt your diagnosis. But being able to ask "Are we sure about this diagnosis? Is there anything else that this could possibly be?" of a doctor is a good thing.