Anyone else willing to talk about their epilepsy?

I've been trying to tip-toe around it in public forums. I mentioned it when I lost the driver's license a few years back.

Always trying to adjust the drugs and what-not. I actually have minimal side effects, but a body constantly changing means the drugs will have to as well.

Can anyone pipe in? Doesn't have to be your problem. Maybe a family member's.

Wow. Didn't realize that, I guess I'm a little slow.

My ex brother in law had it pretty bad since birth, he wasn't able to get a license. He woud have grand mal seizures even with medications.

When he was about 28 or 29, he had an operation (sorry but I don't know the specifics, I can ask if you'd like) which straightened it out. After a year and a half of being off the meds and not having a seizure he was able to get his license and now works for an aluminum smelting plant in Charleston. That was about ten years ago now and he has not had a single problem.

Nothing to be ashamed of. Unlike a lot of other brain disorders that are not easily distinguishable between what is personality and what is a disorder, epilepsy is very obviously a brain condition that you can't do anything about.

If I worked or was friends with someone who had such a condition I'd want to know about it, for no other reason than "what do I do if you ever have a seizure?"

Well, gents, the reason you may not know about it, having applications out for law enforcement jobs, I didn't want the info out there. Now that they are all gone, I don't care lol. I'm looking at getting out of the business and into others that pay less.

I'm not ashamed of it at all. At times I've felt bad for my wife. I've done some pretty crazy things in my sleep when we thought I also had REM Behavior Disorder. Slap, kick, punch... hump. Really. I was asleep.

Once we got a camera on me for a full night, the doctor decided to add a little more meds. That was this year. They have done wonders, but I'm getting that feeling that maybe I need more, so a call into the doc got me thinking.

Back when I was 16, I had an MRI, and they found no abnormalities.

At all the jobs, the co-workers are told exactly what to do with me if there is a problem. Flip me on the side and relax, I'll be with them shortly.

One reason I decided to go ahead and start this thread was, after reading other forums for those who have epilepsy. I saw the side effects they had and how lost they were.

Motorsports can be a bitch if you have epilepsy. I just want everyone to know they have a home where there is someone who can understand.

Thanks for the response, guys.

(BTW, I say "I lost my license." It was for moths at a time. I drive legally now.)

Curmudgeon wrote: ..he had an operation (sorry but I don't know the specifics, I can ask if you'd like) which straightened it out...

Might be where they cut the corpus callosum (connection between the halfs of the brain). I think the effect is that is keeps seizures "storms" from developing / spreading.

It doesn't have much observable effect on the person, but you can get some interesting effects when you start doing test with only one eye if I remember correctly.

aircooled wrote: Might be where they cut the corpus callosum (connection between the halfs of the brain). I think the effect is that is keeps seizures "storms" from developing / spreading.

I'm stricken with what is commonly called partial seizures, petit-mal, or absence seizures. I'm sure there are more names. For seconds or minutes I could be unresponsive. I hadn't known about it for a while. How I never crashed a car is a mystery. Once I had gone 6 months without seizures I was fine. Recently I had a few Grand-mal seizures and I lost my license again. They only happened in my sleep. Once again, all cleared up.

I don't know if its a similar effect, but by eliminating that connection, I would expect the seizure doesn't spread, like aircooled says. Weather it was grand-mal, or petit-mal, it starts in my left frontal lobe as it rockets across the rest of my brain. If it is petit-mal, my brain did the job on its own and kept it from becoming grand-mal. If I convulse, it didn't, and I don't like waking up to a cop poking me in the chest.

The rick is to stay positive and don't worry about what happened. Worry about what will happen.

I have a dog who is epileptic. He has gran-mal seizures in clusters of up to 20 at a time. For a while, every month, there would be a week where he would have seizures every 4 or 5 hours, or as often as every 10 minutes. We put him on a cocktail of Clomipramine (anti-anxiety - yes, doggie prozac), Phenobarb (anti-convulsive), and Zonisimide (anti-convulsive). Theyve had some meager results for the $80 a month we pay for this, not including the bi-annual blood panel, liver enzyme, and kidney tests. His seizures were late onset - started when he was 5...old enough that they didnt think it was a result of a chemical imbalance, and young enough that they didnt think its a tumor or the like.

Its been about 3 years now. He gets meds twice a day - 6am and 6pm. It kind of rules our life (like having a special needs child - everything is scheduled around their needs). Happily, he seems to go further and further lately between seizures (hopefully not jinxing it), and the cluster effect has diminished, he will have a single seizure at a time. He still gets the pills twice a day every day. Vet says its going to have to stay that way till he can go at least 6 mos without a single event.

Most people we tell this to tell us "theres no way Id pay that, Id just put the thing down". We dont have kids, so hes ind of like our child, not a "thing". He drives me crazy at times (waking up at 3 am to a dog knocking over a kitchen table and breaking everything on it, and kicking so violently that any attempt to get a hold of him results in your bleeding, gets old at times). But, I couldnt imagine not doing this for him.

Sperlo, It makes me hopeful to hear that youre able to get a handle on your situation. Makes me feel like mine (well, Bandit's) situation may continue to improve as well.

My Australian Shepherd had epilepsy. Scared the hell out of us when we found out. She tooks meds nearly her entire life. Happy dog. We miss her.

A good friend of mine started having seizures when he was in high school, and his symptoms sound a lot like yours, Sper. Mainly petit mal/absence seizures, and then he had a couple grand mal. Docs had his license suspended for a while, too. I don't think he wound up doing anything but a medication cocktail, but it cleared up within a few years and he's been 100% fine for about a decade now. And as far as I know he's off the meds entirely.

I think you guys know my baby girl. She is a German/Australian Shepherd. Never had a problem, but she knows mine. She would stand guard when I had any problems. She was always there when I came out. Then my boy, shadow (cat) would come and lay down on my chest after I was done.

When I would fall asleep on the couch, I had to move everything away to keep from breaking it from kicking and punching. Right before the meds evened some of the issues out, in my sleep, I violently assaulted a bowl of rice sending it across the room. I woke up a little later with a throbbing pain that lasted three weeks.

I know seizures aren't uncommon for pups, but damn, 4cyl, that healthcare is higher than most people my age! I can't argue, though. All my children are 4 legged... for now.

In reply to alex:

They said it may wear off around 23. Maybe it will 5 years later. I tried taking myself off the meds. Bad result. It sounds like the same issue to me. Left frontal lobe more than likely. Makes you think of some crazy E36 M3, too!

N Sperlo wrote: Right before the meds evened some of the issues out, in my sleep,I violently assaulted a bowl of rice sending it across the room.

I laughed.

PHeller wrote:

N Sperlo wrote: Right before the meds evened some of the issues out, in my sleep,I violently assaulted a bowl of rice sending it across the room.

I laughed.

It didn't.

Guess you have some rice-al tensions.

Or that you were being rice-ist.

That rice should fight for better rice relations.

In reply to PHeller:

Can you imagine if it were a peanut butter sammich?!

we are sorta going through this with my mom. Originally they thought she had a stroke at age 62.. but the symptoms have never stabilized. She has good days and bad days where her balance is off and she gets dizzy, for the most part, you would never know something happened to her.

Recently, they have started to get worse and she wound up back in the hospital for what they thought was another stroke, but could find no sign of it with an MRI. Tomorrow I am taking her in for more comprehensive brain scans as they decided to look for seizures. We are really hoping they do, as they can be treated

N Sperlo wrote: I think you guys know my baby girl. She is a German/Australian Shepherd. Never had a problem, but she knows mine. She would stand guard when I had any problems. She was always there when I came out.

There are service dogs trained to detect the onset of seizures. I don't know what symptoms they key into, but they can either alert you before you know yourself, or can alert others. Some are trained to lie down with the person to help stop them from flailing.

mad_machine wrote: we are sorta going through this with my mom. Originally they thought she had a stroke at age 62.. but the symptoms have never stabilized. She has good days and bad days where her balance is off and she gets dizzy, for the most part, you would never know something happened to her.

Dizzy is a sign I attach to an aura, but it isn't accurate. I lack the words to describe them. Look for repetitive actions. Lip smacking, thumb tapping, etc. It was the repetition that gave away the hint that my Rem Behavior Disorder was not really RBD. I was doing situps in my sleep. Best of luck.

Duke wrote: There are service dogs trained to detect the onset of seizures. I don't know what symptoms they key into, but they can either alert you before you know yourself, or can alert others. Some are trained to lie down with the person to help stop them from flailing.

I've seen these dogs. Isabelle doesn't really have to do anything because I am controlled. She is protective, so she wasn't happy with police and medics when they were needed, but she knows when there is a problem, and she likes to comfort me.

My boss at a previous job had a stepson with epilepsy. One day he had a seizure while driving. Ran three red lights and jumped off the edge of the road into a field. Previous to that he had very few seizures but after that one he had them very frequently. Obviously they suspended his license and I believe he decided go back to school because he wouldn't be able to drive to a job.

Hopefully the meds will control yours, driving would scare the crap out of me if I was epileptic.

nicksta43 wrote: Hopefully the meds will control yours, driving would scare the crap out of me if I was epileptic.

I believe I have had hundreds of seizures while I was driving. I have no idea how I did it, but I maintained control of the vehicle.

I believe I went into autopilot just like people who sleep drive do. If I have any aura I pull over. I still get auras, but no seizures when I'm controlled. That doesn't mean I'm not cautious.

I'm very afraid of heights. The other week, coming back from a motocross race, I saw a guy on a water tower. I almost pulled over because I got dizzy and automatically thought, aura. It went away quick, so I was able to keep driving. There was also the fact that I wanted to hurl, but I knew what was going on there.

I got into an accident with a guy who has a seizure. He rear ended my VW, clipped a friend's Mother's minivan, and parked his truck atop those cement filled posts they use to keep cars away from buildings.

It was scary as I could see him coming, but had no where to go

PHeller wrote: Guess you have some rice-al tensions. Or that you were being rice-ist. That rice should fight for better rice relations.

Hey, at least he wasnt being riceusexual.

mad_machine wrote: It was scary as I could see him coming, but had no where to go

Had a guy hit my truck when he missed the brake pedal and couldn't find it. Similar, I'm sure. He just stuck to the ground behind that little Ranger.

My dad has epilepsy. He's had to switch medications multiple times over the years, too, as they seem to lose effectiveness over time.

Most people don't realize that missing a single dose of medication can be enough to trigger a seizure. So for anyone else who has family with epilepsy, make a point of knowing not only what they take, but also how often, the dosage, and what the pills actually look like. Someone who's just had a seizure isn't going to be able to tell you accurately if he's taken his medication that day, so you need to be able to look at their pills (assuming they use those week-long pill planner box things) and figure it out for yourself.

N Sperlo wrote: They said it may wear off around 23. Maybe it will 5 years later.

My brother in law had epilepsy when he first married my sister. I remember he had to take phenobarbital, so he was pretty zonked out a lot of the time. However, as the years went by the seizures were fewer and fewer apart, and eventually they stopped altogether - I think he was around 30 when that happened, and it's been 30 years since then.