Pure photosensitve epilepsy?

[Toadie]

Hi Everyone.

I am 28 and just over 10 years ago I had a one off seizure just before I turned 18.

I was walking along transfixed by a weird paving stone pattern on the ground that made my eyes go a bit weird, like whenever you try and concentrate on a black and white stripy pattern or something.

Anyway, after 5 minutes or so of that I apparently keeled over and had a seizure. It lasted a few minutes and then I fully recovered, although had a huge headache and was tired for quite some time after. Was a very weird experience.

Anyway went to see a neurologist shortly after and he reckoned I had had a photosensitive seizure caused by concentrating on the weird pattern. Although EEG was normal and had no sign of photosensitivity in the flash test. He didn't think I needed any meds but as I was quite freaked out by the idea of passing out whenever I saw a pattern in every day life he gave me epilim. I took it for about 3 yrs (although often missed doses) and as had no further attacks I stopped altogether and that was 7 years ago. Obviously it has now been 10 years since that episode and have had nothing further.

Neurologist reckons I don't have epilepsy but at the very worst might possibly be very mildy photosensitive.

I can live with this seeing as I have only had one attack in 28 years and now am aware of the small risk can just look away when patterns and stuff make my eyes go funny.

One question I forgot to ask the doc all those years ago was, does having one photosensitive seizure mean I am more likely than the general population to also have non-photosensitive seizures i.e. have 'normal' epilepsy? Or does the fact have only every had one episode 10 yrs ago and that it was likely caused by photosensitivity mean that there is no reason at all to suggest I will suddenly start having random non-photo seizures/develop another form of epilepsy?

I know there are no absolutes in epilepsy but just wondered if I should treat what happened as a one time occurence, as the doc thinks, or if I should always be concerned of random seizures not sparked by photosensitivity?

Thanks guys!
Shaun.

 

[Nakamova]

Hi Shaun --

It you've only had one seizure, then technically you don't have epilepsy -- even if that seizure was due to some sort of photosensitivity. If you've been ten years seizure-free, 7 of them without medication at all, then your chances of having another seizure are virtually identical to that of the general population. You had a one-off seizure, and you shouldn't worry about ever having one again.

Best,
Nakamova

 

[Toadie]

Thanks Nakamova! I'd read on this forum that if you'd had only one years ago that you shouldn't consider yourself at any greater risk for epilepsy than the gen pop. Had just wondered if photsensitive seizures can lead to non-photo seizures or not.
Anyway seems like it makes no difference either way seeing as I've only ever had one seizure.
I consider myself very lucky to have only had one experience so far but it makes me realise how inspirational some people are in how much they have to live with everyday. Am looking into supporting epilepsy charities at the moment - anyone got suggestions for a good charity in the UK where most of your donation goes straight to the work rather than admin etc??

Thanks again Naka for your supportive reply.
S

 

[Nakamova]

It's great that you want to support an epilepsy charity. We have quite a few UK members -- maybe one of them will chime in with suggestions?

 

[Junebug]

It doesn't sound like photo-sensitve epilepsy or seizure at all to me. Usually when people have a photo-sensitive seizure/epilepsy they won't be able to be under any kind of flouresent lighting i.e. at a grocery store or office. I'm not an expert or anything but I would say that it was just a freak thing.
Hope you don't ever have another seizure, they aren't fun at all and I wouldn't wish epilepsy on my worst enemy.

 

[Toadie]

From what I've been told by docs you can have varying levels of photrosensitivity. Some people will have trouble everywhere while others may have only a very specific trigger that they will very rarely if ever come across in everyday life.
Anyway is very reassuring to hear that having just one and then no more means it is more than likely a one off. It has always been in the back of my mind, 'what if it was a brief indication of epilepsy that will re-emerge at a later unknown date!' From what everyone seems to say this isn't the case so feel a lot happier about that.
Thanks for your comments.