Hi, new guy here...

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Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Anders

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Hi, I’ve been looking around the site for a few days now and have found a lot of insightful info here, so thought I’d take the plunge and register, hopefully will be able to contribute something to help other people as you guys have already done for me.

Anyway, a bit of background info, I’m from the UK, 23 years old, am taking 200mg of lamotrigine a day, and been diagnosed with epilepsy for a little over a year now. I had my last full on seizure back in September last year where I completely blacked out, when I came round I was in my bed, no idea how I got there, or how long I’d been there, was on my own at the time so must have done it myself.

The first seizures I had were small, didn't even realise they were seizures at the time. They occurred once every month or so, and I would lose my trail of thought and I guess confused is the right term, maybe disorientated, I knew where I was and what I was doing, just couldn’t keep my mind on one thought and it seemed to be very noisy in my head. All this was while working in a pub, I initially put it down to lack of sleep, dehydration and sunlight, as it seemed to happen when going from a very bright outside, to a fairly darker inside. This went on for about a year, after leaving the pub and moving back home I these small "seizures" got progressively worse and lasted longer, still only a few minutes at a time though. I ended up self diagnosing (stupid I know now) and came to the conclusion it was a problem with aspartame, an artificial sweetener found in many soft drinks. After cutting aspartame out of my diet the small seizures stopped, and I thought everything was fine, until about 8 months later when I had a full on seizure while driving, as a student, and my mum was my instructor luckily (this was all 10 days before my test as well, so lucky it wasn’t after and potentially driving on my own). Anyway, went to Hospital and was immediately diagnosed with epilepsy and put on Phenytoin Sodium initially, after eventually meeting my neurologist (took 10 weeks!) he moved me onto carbamazepine (tegretol), I wasn’t suffering any side effects from the Phenytoin, but he told me the potential side effects are far more severe on it than other meds. After a few months (September 2010) on carbamazepine I had another full on seizure and was moved onto Lamotrigine (not sure why they didn’t up the dose of carbamazepine). It was only after switching I realised that I was experiencing some side affects while on the carbamazepine, kind of hard to describe (like most things I’ve experienced with epilepsy) but it was sort of like my brain wasn't working at its full potential, which I thought was a permanent symptom of the epilepsy as it was explained to me that all anti-seizures lessen the conductivity of the brain and stop "surges" of electronic signals which cause the seizure.

Sorry to have gone on a bit there, but think I’ve covered pretty much everything thats happened to me. As you can see it’s a pretty mild case I’ve got, nothing in comparison to what some people have to go through.
 
Hi Anders, welcome!

Like you, it took me a few tries before I found the right med. Also like you, I ended up on a low dose of Lamictal (175mg). I hope things are stable for you now.

Feel free to explore all the forums here at CWE. We've got a bunch of members from the UK -- you may run into them as you wander around...

Best,
Nakamova
 
Hi Anders:hello: Nice to meet you:)

Actually, though self-diagnosing isn't always a good idea, you know what's normal for you more than doctors do. You were probably right about the aspartame. It may not have been the cause of your seizures, but it very likely contributed and even acted as a trigger; aspartame has a nasty reputation concerning seizures and migraines. The same goes for dehydration and lack of sleep. It seems like you are very conscious of cause and effect; if you keep a journal (there are lots of threads about keeping a seizure journal here)you may see even more patterns and can identify other triggers.

I think many of us can identify with feeling that our brains aren't working at full potential while on meds.:rolleyes: I guess it's a matter of finding what works best with fewest side-effects and accepting the trade off.

BTW, thank goodness you were with your mom when you had a seizure while driving and especially that you weren't hurt!
 
Welcome to the site! I have found it very helpful in helping me deal with my epilepsy. There is a alot of helpful information and people here! I also had a seizure while driving. Not fun even though I cant remember any of it lol. I too felt like my brain had been somehow damaged by the seizures and finally found out that it was from the meds, thank god. Best of luck finding the right medication.
 
Welcome to CWE!

I'd been having smaller seizures for a year before my tonic-clonics started and had no idea what they were either, I think that's actually not uncommon the symptoms are often hard to explain.
I hope you are able to sort out your medication too, another frustrating part of Epilepsy that many people in this forum can relate to.
 
Howdy:cowboy: and welcome aboard! I hope that you are able to find everything that you need and feel relaxed. We are all here to help each other!
 
Thanks for all the nice words everyone. Its reasuring/comforting hearing that others of you have had experiances similar to mine and actually understand what its like, before I had epilepsy i honestly dont think i could have properly comprehended what it is like.
 
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