Just saying hi :)

[iam]

Hello.

I have had a diagnosis of epilepsy for the last 42 years (being 52 now). I had another of my 'turns' yesterday eve, which prompted me to look for a forum today to get in touch with others in a similar position. I feel it would be a really good thing to find a group, somewhere near to me in the uk, to meet with others and talk openly about what I experience - but, and this is wierd, I don't really think of myself as 'epileptic'. I'm a little scared in fact.

I'm in a difficult situation. I have tried to live with the condition and struggled with it for such a long time. The seizures I get are simple/partial originating in my temporal lobe. I was prescribed phenobarbitone at age 11, which I took for a year or so, then just stopped, as it made me feel sooo stupid, and I couldn't keep up at school. Then as an adult suffered panic attacks at work (age 21), which resulted in another eeg, where they found a slow-wave abnormality. I was prescribed carbamazepine which I took for the next god knows how many years, until I discovered it was affecting my liver enzymes and immune cells. I swapped to gabapentine after another consultation with a neurologist, and find I can tolerate this better, but I believe it doesn't really work very effectively. I still get episodes approximately once a month or so.

I live in a kind of denial about it - when I haven't had one for some time, I keep taking the medication, and sort of have to assume they aren't going to happen. When I get one, at the time it happens, I feel really anxious, strange, part remembered dreams come back to me (it seems), and my short term memory gets a bit scrambled - and I just need to be somewhere safe until it passes. I consider myself lucky that I don't lose consciousness and my motor functions etc aren't affected, but for around 15 mins I do feel really wierd, and it is very unsettling. I always need to make sure I have a valium with me, as I believe it helps the episode to pass and helps me control the feeling of panic.

Sorry, this is a rather long introduction...I'll end now but hope to contribute again soon. I'm especially interested in the ways temporal lobe epilepsy can apparently affect personality, its links with creativity, alternatives to gabapentin, and connections to episodes of migraine and depression.

Thanks for letting me share...

[huskymom]

Welcome Iam!!

Always great to see a new person here. You have come to the best site that I have ever found. You will be able to ask any questions that you have, ask advise or just rant. There will always be someone here who has had your same experiences. Best of luck to you!

[Meetz1064]

to ya, Iam! Cool name, btw!

Yup, you've found a great place to be, and there are plenty of people from the UK around the site as well. I think of about 20 off the top of my head. You'll see them around--maybe I'll PM a couple of them to see if they're in the North or South, and if they can clue you in about local groups.

Phenobarbital (tone in the UK) is famous for making you feel like a dope. Been there, done that one. URG. Still doing the Carbatrol thing (carbamazepine) right now, and having pretty good luck with it myself.

I've been through quite a long list of meds, I've had E all my life.......what a joy.

Frankly, I think the best think to do about E is to look at it as an annoyance. Not to be afraid of it. It's a quirk, if you will. We still have our arms, legs, the ability to see and hear, not in a wheelchair ....... you get the idea. At least that's the way I look at it. All 4 types of E that I have are nocturnal, but all annoying when they show up. Especially the t/c's as I break bones......

Is it possible for you to get into your neurologist, and discuss things with them? See what is what? Find out if your blood levels are right, or is there a reason why you're breaking through every so often?

To that end, have you considered keeping a seizure journal? That may help you figure out WHY you're having the breakthroughs in the first place, and you can show that to the doctor, and go from there.

Anyway, feel free to check the place out, I'm sure you'll find all sorts of interesting things in the nooks and crannies here. Mr B has built us an AWESOME place to hang out in!

Take care,

Meetz

[iam]

Thanks for the welcome, it would be good to be in touch with some uk people. I am reluctant to go through another neurology consultation yet, but if the thing I get should get a lot worse at some point I may have no choice. I would prefer for now to just look around and do some reading and see what I can do for myself. In my experience, my episodes are very stress dependent, and the carbemazepine was never any more effective than the gabapentin anyway, so I don't have any great hope that a new med will be any better.