Epilepsy

[bileduct]

So how many other peeps here have epilepsy or have relatives with this condition?

Mine came about a few years back during a period of extremely high stress at work, massive sleep deprivation and Red Bull consumption. I was found wandering around and was taken hospital where I then had a massive tonic-clonic seizure that then turned into status epilepticus and I was put into a medically induced coma for three days.

I've had weird memory problems since, where I'll forget what I was thinking two seconds before, and I often have trouble recalling names of people, places, etc.. Even forgot to take my levetiracetam prescription for a few days and had another minor seizure.

Weird thing with the doctors was that they didn't really warn me at all about future risks and complications, so reading up about "SUDEP" recently and how I was in the main risk group was a bit of a wake up call that really made me think about the positions I put myself in at times and what would happen if another seizure occurred.

I'm interested in hearing other peoples stories, particularly those involving ICU and induced comas.

 

[AJB1102]

My first thought process: google, google images, search "strobe light gif", insert image, decide not to be a merkin.

I got 2 friends with epilepsy. The brother of a mate and the father in-law of a mate. The first one I think is a result of having had brain tumors removed as a kid. Epilepsy though is just one of the 'side effects' of having chunks of his brain cut out though. It used to give him horrible seizures but I think its been pretty under control for a while. He'd just start yelling incoherent shit and shake most the time but some could lead to fits. Usually just snap out of it, go back to normal and you couldn't convince him he'd just wigged out.

The other I only found about around xmas just gone when I shared a cab with him and the cabbie's interior light was blinking and he had to get me to explain to the cabbie to shut it off before he could get in. Cabbie's English wasn't so good (mine either probably, we'd had a few) and it took a minute or 2 longer than it should have.

 

[bileduct]

Thankfully I don't have photosensitive epilepsy!

Being that sensitive to patterns and light would f**king suck. I'd never be able to see Tool live again.

 

[SpaceMonkey]

A good mate started having blackout episodes around 4 years ago. He’d been born with a heart defect (he was a “blue baby” and had corrective surgery after birth) so the doctors initially thought it was his heart and he had a pacemaker fitted but the blackouts continued and he was eventually diagnosed with temporal lobe epilepsy. He was put on a drug regimen, barred from driving (highly inconvenient as he’s a drummer) and advised to limit alcohol intake to no more than a couple of drinks a day. A couple of years later he’s got it well under control, has been given the all clear to drive again and can relax the booze restriction a bit.
And he’s got a pacemaker as insurance for any future heart issues!

 

[bileduct]

Yeah, not being able to drive is the worst. I couldn't drive for six months after I was hospitalised. Now I have to submit a drivers medical form each 12 months to renew my licence.

I also don't drink alcohol anymore. Not too much of a big deal since I only drank to get pissed anyway, and weed is my drug of choice now.

 

[SpaceMonkey]

My mate moved to Canberra from the inner west for work (hes a public servant) soon after diagnosis, needless to say hes VERY relieved he can drive again.

 

[Walt Flanigan]

My brother has epilepsy. First seizure was when he was in Year 4 but didn't have another one until his late teens when he started the late night drinking sessions that come at that time of your life. He started having them more regularly from then up until his mid 30s when he finally toned it down a bit. The seizures were really intense and not easy to sit with him through. He's a stubborn bastard though, one of those people that can't be told.

 

[bileduct]

My brother has epilepsy. First seizure was when he was in Year 4 but didn't have another one until his late teens when he started the late night drinking sessions that come at that time of your life. He started having them more regularly from then up until his mid 30s when he finally toned it down a bit. The seizures were really intense and not easy to sit with him through. He's a stubborn bastard though, one of those people that can't be told.

What kind of seizures was he having?

 

[bileduct]

My mate moved to Canberra from the inner west for work (hes a public servant) soon after diagnosis, needless to say hes VERY relieved he can drive again.

Yeah, Action buses f**king suck. I wouldn't step onto one unless I was in a hermetically sealed suit.

 

[Walt Flanigan]

What kind of seizures was he having?

He’d hit the deck, go stiff as a board with lock jaw and shake violently for about 5 mins. Then he would go into a deep sleep. Fortunately we can now see signs that he’s about to have them and prepare for it but if nobody is around then he can really hurt himself.

 

[bileduct]

He’d hit the deck, go stiff as a board with lock jaw and shake violently for about 5 mins. Then he would go into a deep sleep. Fortunately we can now see signs that he’s about to have them and prepare for it but if nobody is around then he can really hurt himself.

What are the signs he shows?

So he has full tonic-clonic (grand mal) seizures. That's pretty nasty, especially if his airways get blocked for some reason. Does he still get them at all, and is he on medication like keppra?

Just out of interest, has he ever taken LSD and had complications with epilepsy?

 

[Walt Flanigan]

What are the signs he shows?

So he has full tonic-clonic (grand mal) seizures. That's pretty nasty, especially if his airways get blocked for some reason. Does he still get them at all, and is he on medication like keppra?

Just out of interest, has he ever taken LSD and had complications with epilepsy?

Nah no LSD or anything like that. He was on Epilim for a long time but not sure if that’s still the case.
Yeah if his airways get blocked during a seizure then it’s going to be pretty bad. Because of the lockjaw he gets, you can’t pry his mouth open to clear it. I made the mistake of trying and nearly lost a finger.

Just before he has them he’ll get this little twitch and make a weird noise. You don’t get a lot of time but it’s enough to get him to the ground and away from anything dangerous.

 

[bileduct]

Just before he has them he’ll get this little twitch and make a weird noise. You don’t get a lot of time but it’s enough to get him to the ground and away from anything dangerous.

Yeah I got told I made some weird animal-like noise before going into a series of seizures at the hospital. I do remember a brief moment of consciousness where I started panicking and tried to get the f**k out of there and started fighting one of the nurse dudes in the emergency ward. The dude almost broke my wrist (which is the last thing I remember), but apparently he set off some kind of alarm and about 6-7 other people came running and were all trying to restrain me.

I asked about LSD because it's the one drug I actually miss taking and wasn't sure if it would trigger seizures if I took it these days. I pretty much avoid alcohol.

 

[crewley]

So what mainly caused your epilepsy? The red bull, the sleep deprivation, the stress?

I am afraid I'll also go on the same trail since I am doing all three right now. And especially that I am going through a breakup, I am also not eating very well.

 

[bileduct]

So what mainly caused your epilepsy? The red bull, the sleep deprivation, the stress?

I am afraid I'll also go on the same trail since I am doing all three right now. And especially that I am going through a breakup, I am also not eating very well.

I've got no official diagnosis on what the main cause was, but I'd say it was the 2 x 500ml cans of Red Bull that pushed me over the edge.