Epilepsy

[Billyboy34]

Does anyone here deal with epilepsy? I've been dealing with it for the past 4 years. I started randomly having them at age 26, three months after getting married. Talk about scaring the hell out of your wife. No meds seem to work for me. I was having seizures randomly with no warning, once while driving. I got so frustrated with it I decided to go under the knife last summer. The surgeon actually cut my head open and took out a piece of brain. Apparently I was just too damn smart for my own good!! So far so good. Ten months later and no seizures! Hopefully I will be able to start driving again. Luckily my wife still lets me drive the trike.

[atc007]

My brother has it. I'm 41,he's 59. My sisters say he always had it. He is mentally challenged. Born with the cord around his neck,oxygen deprived,smartest,toughest,nicest person I know. lights the room up wherever he goes! His first bad seizure was 1978,middle of the night. Loooonnnngggg Story short,,we live in the middle of nowhere,a trip to the hospital is an hour and a half each way. He has been controlled with 4 depakotes,4 tegretols,and 4 Phenabarbathols a day. Yes,enough to knock down a grown elephant. EVERY day for the last 31 years. We,his Neurologist and I,weaned him off the Phenabarb,1 pill at a time every 6 months. So after 2 years,we had him off,,he got really excited the month before his hip replacement and had a Grand MAL. Down 45 minutes,,exhausted another hour,worst thing I've ever seen. And I've seen some stuff. That was 07,he's back on 4 a day,and we're not messing with it again. A friend of mine had a hot dog section of brain removed down in Philly. But he likes his booze,and they said that was a big part of his problem. He's coming to visit soon,have to see how he's doing>

[Dirtcrasher]

One of my good buddies' daughter had a seizure a year ago, then another. Poor girl is merely 4yo and the docs said she has epilepsy. Both her mom and dad are terrified because the last time she just dropped (out of the blue) and hit her head. He stays home with her now and she's on meds. They still feel awful as parents......
Thinking they did something wrong but it is what it is. Apparently there is no cure for epilepsy, just meds to try and keep it at bay.

[tri again]

Has anyone seen the service dogs that can PREDICT a seizure?

Discovery channel, I think.

The dogs can smell or sense the impending seizure
somehow and will actually gently pull the person by the shirt sleeve or
clothes to the ground so they don't fall.

Very cool.
Some dogs can even pick out cancer cells out of samples lined up in cups.

There's almost gotta be an alarm on the horizon that follows eeg patterns,
able to predict the storm.

Maybe it's time to hit the drawing board.

[Billyboy34]

One of my good buddies' daughter had a seizure a year ago, then another. Poor girl is merely 4yo and the docs said she has epilepsy. Both her mom and dad are terrified because the last time she just dropped (out of the blue) and hit her head. He stays home with her now and she's on meds. They still feel awful as parents......
Thinking they did something wrong but it is what it is. Apparently there is no cure for epilepsy, just meds to try and keep it at bay.

DC – I deal with the doctors up at Mass General. They have been great to deal with. If your buddy is looking for some top notch doctors I can get you the names and contact info.

It’s definitely tough to deal with. In many cases children will grow out of it overtime. I know a few people who grew out of it around their early teens. And on the other hand it’s not uncommon for people to start having them between ages 25-45, like myself. So for, knock on wood, my surgery seems like it has worked. But then again only time will tell as the doctors wean me off my meds.

[atc007]

Billy,If you don't mind me asking> What al meds are you on friend? My brothers on 4 ,,nevermind! I already posted his meds above. Our Neurologist just retired,,he was with us 33 years. We already KNOW what's coming,,they're telling us about all these NEW meds,,that are SOOOOO much better,and not as hard on your body.. He is 59 now,,no side effects, NONE. The amount he takes is literally supposed to sedate an elephant,,ok almost! But we are NOT gonna go messing around with what we know works! I'm just curious,because I bet you have some of the NEW stuff! All this and ride that bike?? Anyone ever tell you ,you're one hell of a guy!!

[Billyboy34]

Atc007 - Never hesitate to ask me any questions. I can only hope my knowledge and experience with this situation can help others in the same boat.

They started me on Keppra, that didn’t seem to work for me even at the maximum dosage. Although it works great for many other people, just not for me. Then I was put on Trileptal. After reaching the maximum dosage of Trileptal and not having much success they added Dilanton to the mix. Even after been on all that I was still having seizures. That is when I had enough and decided to go for the brain surgery. As crazy as it sounds, I was looking forward to the surgery. The thought of surgery was much more appealing than having to deal with the side effects of the meds. When I was on the maximum dosage of meds, I was dealing with double vision multiply times a day. And when you’re job involves looking at a computer for a good chunk of the day, that can be a real pain in the . Although when I saw a good looking girl it always appeared she had 2 sets of racks!!!

Since the surgery I have been taken off Dilanton and my dosage of Trileptal has been reduced to half. At the one year anniversary of my surgery (July 20th) my Trileptal dosage will be reduced to half again. Hopefully I will be completely off the meds by 2012. This will be the true test of my surgery.

[atc007]

Yep,,Same potent stuff! 6 month step down. My brother was fine for quite awhile. My one sis lives in Alaska,she and her family were down,we were going to a local amusement park. ALL of which just gets him wound for sound. He's mentally challenged. And he had a Grand MAl. Without that total overload. I am 99.99 % sure he would have lived his life out without a problem. Now <As I am typing this. My pharmacy forgot to leave his,and the rest of my familes pills out . We ran late,I called,told her to leave them at The Sub Way next door,as she has done before. Nothing. Called the owner,yep,I have his Home #,left a message,nothing. He takes 4 a day,today he got 1 ,the Tegretol this is. I gave him a extra Phenabarbathol and sent him to bed. I am fit to be tied,and Defenitely Switching pharmacies !!!!!!!! I am just livid. I have nowhere to go,no way to get the meds tonight. My best friend growing up,developed this. He wouldn't stay out of the drink,which of course did not agree with his meds. but he had a hotdog sized chunk of brain removed. He was here last night to buy a quad for his kids.He looks like a million bucks,I'm gonna ask him what if any meds he's on this weekend. I think he's 5 years post op.

[atc007]

Well,he hasn't seized. I was waiting outside the pharmacy when it opened. She saw me walk in,asked how I was.. O M G !! I AM SOOOOOO SORRYYYY.. I grabbed the bag tore it open,ran out to the truck and got them in him. Went back in and she had the gall to ask me to sign for all the co pays on the order. there were lots of people there,so I stayed silent. I wanted to scream there is a REASON she's making $110000 a year at her job. Because she simply CANNOT make these mistakes! And when she does,,,she HAS to rectify them. So far so good,prolly not out of the woods till tomorrow. I got him a thick peanut butter toast and orange juice before he even sat down when he got up. Got his BS up,and that will sometimes help Greatly! About the only trick I know with seizures!

[Billyboy34]

That's good to hear he didn't have any reactions. I've forgotten to take my meds a few times in the past and luckily never had any reactions. I tend to have seizures when I'm sleep deprived. It’s happened twice before shortly after getting off the plane when I had to fly from the east coast to the west coast for work. One of the times was just after I got into my rental car and was driving through the mountains of Yosemite National Park.

[atc007]

Just wondering how you're doing Billyboy?? Things are pretty good here.

[tri again]

Neighbors teenage boy is going in for cranial artery bypass surgery this morning.

Apparently one of the surface arteries splits into a few branches where it's not supposed to and
was causing little seizures.

Surgeon says it should take about 1/2 hr like it's no big deal.
Sounds like he's going to tie into the artery and actually run it on the outside of the skull under the scalp so he won't have to take a big chunk of skull bone out.

Pretty amazing what these new guys are 'inventing'.

[rdlsz24]

Just wondering how you're doing Billyboy?? Things are pretty good here.

Billyboy was the guy that passed away in a car accident July 22

http://www.3wheelerworld.com/showthr...RIP-BillyBoy34

Rob

[atc007]

UNREAL.. Should have known... Threw a little money their way and had No clue. What a world,,,you just never know... What a loss,what an incredible guy.. To a great friend I never got the pleasure of meeting.... R.I.P. and God Speed

[digschopper]

my wife had epilepsy. we were in south carolina at the time,and it turned out her doc was one of the best in the country,having pioneered many treatments and research. he suggested the surgery,but she put it off until she had enough. it took 2 times under the knife,but today she's fine.meds(keppra) continue,but are slowly being reduced. we're divorced now,at least in part because she didn't think she's survive surgery,or wouldn't be right afterward. her life is much better since the surgery,and i hope we can start over . good luck ,and keep an eye on any symptoms...don't ignore any signs.