Hey Folks

[Soulcreek]

Hi everyone,

I'm a 35 year old guy from the east coast of Northern Ireland, UK. I was diagnosed with epilepsy when I was 18, following a grand mal seizure I suffered while driving one night. Thankfully, I wasn't hurt; one minute I was driving, then I was in an ambulance. An EEG later suggested I had epilepsy, but this hadn't been my first encounter with seizures.

I had a convulsion when I was two, and then another when I was five. The latter paralysed me down my left side, leaving it deficient in pretty much every department- strength, sense of touch, co-ordination etc. Believe it or not, despite this, I play the drums! I had a CT scan, which apparently revealed a blood clot on my brain. Anyway, after my diagnosis at 18, I went on Epilim, which I hated, as it gave me headaches and made me jaundiced. I then went on Tegretol, which seemed ok at first, and after I had been seizure free for a year, I was allowed to drive again. One day about 18 months later, I ended up having a seizure in work, and I haven't driven since (14 years now).

My dose of Tegretol was increased, and then problems started. I began having absence seizures as well as grand mal. Spiffing, eh? I ended up going off work long term, and haven't worked in years now. I have tried Lamictal, Keppra, Topamax (Jesus...bloody awful), and I've been taking a massive dose of Neurontin (gabapentin) for about 8 years. I've been on Vimpat (lacosamide) for over a year as well, with 10mg of Frisium (clobazam). I've grown weary of Neurontin and my neurologist has agreed to allow me to withdraw it gradually, as any time I had a complaint, the automated response was to up my dose.

By the way, I found out a few years ago after an MRI scan that I have a very rare condition, known as Schizencephaly. There are two types- open lip and closed lip. I have closed lip, which is much the lesser of two evils, but it means I'm susceptible to seizures. There's no doubt that there are many on here who have things much worse than me, or have relatives with much worse than me, but I do really hate having this condition.

In addition to the meds, I take a few supplements, such as manganese, vitamin E, flaxseed oil, magnesium, Zinc, and B complex.

[Endless]

Soulcreek,

Welcome! I'm glad you found the forum.

Endless

P.S. I love your screen name!

[Nakamova]

Hi Soulcreek, just wanted to add my welcome to that of Endless. I hope you feel free to explore the forum and post.

Best.
Nakamova

[Soulcreek]

Soulcreek,

Welcome! I'm glad you found the forum.

Endless

P.S. I love your screen name!

Cheers, Endless. I'm quite sure I don't have to ask why you love my screen name!

Thanks for your welcome also, Nakamova. By the way, I should add to my story that although I was paralysed on my left side after the seizure I had at 5 years old, it was only for a few hours; not permanently.

P.S. I was wondering if any of you know of effective ways of warding off seizures through means other than medication?

[huskymom]

Hi Soulcreek!

Glad to have you aboard. There will always be someone here who can help or provide advise. Happy surfing

[Nakamova]

P.S. I was wondering if any of you know of effective ways of warding off seizures through means other than medication?

Neurofeedback is one treatment that focuses on retraining the brain (using EEG feedback) to suppress "bad" brainwaves, and enhance "good" ones. Unfortunately it's not yet widely available, and it can be expensive.

For warding off a seizure just before it happens, below are links to a few threads from the archives that discuss some different approaches:
http://www.coping-with-epilepsy.com/...20therapy.html
http://www.coping-with-epilepsy.com/...ive-behavioral

[Soulcreek]

Thanks for that, Nakamova. I should actually have pointed out that although I have suffered grand mal seizures, I haven't had one for quite some time (at least two years, I'd say). I suffer more from complex partial seizures, or "absence" seizures. I just worked out one of my triggers yesterday, which turned out to be physical exertion. I already knew that other triggers included anger and confrontational situations, so the more I can identify triggers, the less I'll be having absences. My absences would come in clusters, so if I have one, it's possible I'd have several in a day. This would continue over a few days, and then I could go for a week or two without having any. My neurologist feels I may never be seizure-free, given the number of medications I've tried, along with the fact I have closed-lip Schizencephaly. One can only hope...