Epilepsy

[nudemetalz]

Is there also anyone else here "lucky" enough to have this condition?

[george formby]

In my twenties I suffered from Petit Mal, a minor form of epilepsy which caused me to black out. No warning, no clues just instant sack of potatoes. I came around in a hospital bed a few times, bruised, battered & torn. I took a dive down an escalator on the London Underground one morning, that was a doozy, those steel teeth make a mess..

Touch wood it has gone as mysteriously as it turned up. Been on my feet for nearly 20 years now.

[Tigadee]

My wife does - no one in her family has it so we're mystified by its occurence - and it's been a tough battle up until recently. She's been through 10 different drugs and finally this year, Keppra works and we're so SO thankful, because it's been five long years of seizure after seizure with only a few rare seizure-free months along the way.

Now she's onto her fifth seizure-free month and big sigh of relief too that she doesn't suffer from the extreme side-effects of the drug as well! About time as the list of available drugs was getting shorter and talk of brain surgery was starting to be mentioned... :shit:

[nudemetalz]

Interesting, thanks Tigadee and George.

I'm just a little bummed out about it.

I have had it since 2005,...and now have had 4 seizures in the last 2 weeks.
I now have no licence for 12 months (as per law) and that means no Moto Guzzi for the Summer.

My drugs I take (12 per day) appear to be having no effect now. I'm thinking is well and truly time for some new ones.
Seen the GP and got an urgent request through for the neurologist.

[rickstv]

Three years ago I got hit on the head by a boom on my brothers boat. because I had concussion and a small bleed in my brain the doc told me there was a slight chance of seizures. So he prevented me from driving for 3 months. Nothing happened so I can now drive.

He told me if I was driving and a seizur came on, there would be no warning to allow me to stop the car. I felt perfectly fine and was naughty on a couple of occasions and drove to the shops 2 minutes down the road, BUT I did stay well away from my bike for the full three months.

If I was epileptic, the meds would have to be bloody good before I jumped on a motorcycle.

Rick.

[BoristheBiter]

I have/had Juvenile myoclonic epilepsy.

Thankfully i have not had a grand maul since i was in my twenty's.
Drugs didn't do a thing but I knew what the triggers were so like my migraines i can control them.

[yungatart]

Bugger, Chris! Sorry to hear that.

One of my boys had epilepsy, it was never very well controlled and he took heaps of meds (well, heaps for a kid) for epilepsy and other conditions.

One day, he just refused to take them any more, said he had decided that he wasn't going to be epileptic any more so wouldn't need them. He was 12 at the time, coming up to 29 now...he has remained seizure free!

[Tigadee]

I'm just a little bummed out about it.
I have had it since 2005,...and now have had 4 seizures in the last 2 weeks.
I now have no licence for 12 months (as per law) and that means no Moto Guzzi for the Summer.
My drugs I take (12 per day) appear to be having no effect now. I'm thinking is well and truly time for some new ones.
Seen the GP and got an urgent request through for the neurologist.

Sorry to hear about that, mate. It's a shit thing because even though it's not the worst condition in the world to have, it can impact strongly on your life, employment options and freedom.

My wife got it early 2006 and at times would have six seizures in a week, sometime nones in two months - cause unknown. It's changed/mutated into a different form of epilepsy last year and only now (2012) we've finally got it under control. Triggers were flashing lights, more than an hour of computer/TV a day, poor sleep, tiredness, and I suspect, sometimes wrong combinations of drugs.

Talk to the neuro about Keppra and see if he/she can recommend it... While the side effects can be more severe than other drugs (if you get them), it does seem to be a whole lot more effective than those other drugs. Also try vitamin B, it's been shown to assist in some patients - I got my wife started on it just before she started Keppra and who knows if it helped too, but doesn't hurt to try either.

Good luck and don't give up hope!

Yunatart - That's bloody brilliant and brave of your son, and at 12 too! Many times, my Mrs and I have felt that way too but were too chicken to risk it...

[yungatart]

Good luck and don't give up hope!

Yunatart - That's bloody brilliant and brave of your son, and at 12 too! Many times, my Mrs and I have felt that way too but were too chicken to risk it...

Yeah, Nudey, don't give up hope...:love:

Brave, Tigadee? At the time I thought it was bloody stupid, but TBH, we kinda 'fought' this kid on so many things, I just didn't have the energy to argue! I thought he would go back to regular seizures, and then I would win. (Not that he was naughty, but had some pretty big health and learning issues).

Hang in there!

[nudemetalz]

Thanks for the great posts.

It is rather demoralising, esp when you see all these bikes going to work in the morning, while you're getting a lift in a car.
And see a polished gleaming red Moto Guzzi sitting idle in the garage.....

Never, mind, that Keppra does sound like a shot.
Anything that would help.

[Paul in NZ]

Seriously - we all have times when life won't co operate... Making sure you are around for your family is more important right now than any motorcycle will ever be.

Change the oil, put it on a stand and a battery tender and get your health sorted mate...... Its just a motorcycle - it will wait for you and be all the sweeter when you get back into it.... Everything else is a luxury.

[nudemetalz]

Seriously - we all have times when life won't co operate... Making sure you are around for your family is more important right now than any motorcycle will ever be.

Change the oil, put it on a stand and a battery tender and get your health sorted mate...... Its just a motorcycle - it will wait for you and be all the sweeter when you get back into it.... Everything else is a luxury.

True.

I can always get another bike,..but can't get another son or daughter.

[Paul in NZ]

True.

I can always get another bike,..but can't get another son or daughter.

More importantly they can't replace you mate....

[Tigadee]

I can always get another bike,..but can't get another son or daughter.

Breed a few more... Make sure they're fed, looked after, make them concentrate on their studies and pick good careers, then when they're old enough to be self-sufficient and can contribute to your pension/motorcycle fund, ride like the wind! :lol:

[nudemetalz]

Breed a few more... Make sure they're fed, looked after, make them concentrate on their studies and pick good careers, then when they're old enough to be self-sufficient and can contribute to your pension/motorcycle fund, ride like the wind! :lol:

And their KiwiSavers can pay for my bike rego & tyres !!

[Edbear]

Interesting, thanks Tigadee and George.

I'm just a little bummed out about it.

I have had it since 2005,...and now have had 4 seizures in the last 2 weeks.
I now have no licence for 12 months (as per law) and that means no Moto Guzzi for the Summer.

My drugs I take (12 per day) appear to be having no effect now. I'm thinking is well and truly time for some new ones.
Seen the GP and got an urgent request through for the neurologist.

Sucks mate! Hope the Neurologist can come up with something. There has been something lately using electrodes, I'll see if I can find it again.

[oldrider]

Our eldest son has Epilepsy (among other things) and I have been reading up about L-Glutamine (for something else) but it keeps making references to Epilepsy, which I want to go back and follow up but you could just go ahead and look it up yourself!

Might be nothing but then again it could be useful information!

Magnesium levels is worth checking also, our son gets regular massage of his legs using Magnesium gel and most seem to think it has helped him.

The Magnesium is also good for Cerebral palsy, that's what we mainly use it for! Good luck with that, cheers, John.

[Daffyd]

Bugger, Chris! Sorry to hear that.

One of my boys had epilepsy, it was never very well controlled and he took heaps of meds (well, heaps for a kid) for epilepsy and other conditions.

One day, he just refused to take them any more, said he had decided that he wasn't going to be epileptic any more so wouldn't need them. He was 12 at the time, coming up to 29 now...he has remained seizure free!

That would seem to me to be a classic case of mind over matter! Good on him!