Anyone have a family member/friend who has epilepsy??

Original post by karen32

Mar 12, 2004 04:09 PM

my dad has it, and i really need someone to talk to today. you can FM me if that's better for you.

JodiBabe Posted: Mar 13, 2004 11:56 AM

Re: Anyone have a family member/friend who has epilepsy??

Karen,

How often does your dad have seizures? What type of seizures? Has the dr tried different meds?

Surgery is only an option if the person is a good candidate. I had to go through extensive testing including 11 straight days in the hospital as well as an overnight test. I had my surgery at Columbia Presbyterian in the city. At the time I was have 8-12 seizures a month all within a few days time.

karen32 Posted: Mar 13, 2004 12:02 PM

Re: Anyone have a family member/friend who has epilepsy??

he has been having them about once a month or so. they are getting pretty bad, and pretty long. he kinda goes blank for a minute or two. depending on what he is doing, sometimes he can continue to somewhat 'function' during the seizure.

yesterday he had a seizure while driving, and rammed into a woman stopped at a red light. the witnesses say he got out of the car for about two seconds, asked her if she was okay, got back in his car and drove away. he doesn't remember any of it!! both airbags deployed! it's just very scary. witnesses followed him and called the cops - thinking he was leaving the scene of the accident. when they were able to stop him at a red light, they realized something was really wrong. the cop also realized something was wrong and identified right away that he had had a seizure. they took him to the hospital but he doesn't remember any of it!!! yesterday was truly the scariest day of my life!!!

my dad is so freakin' secretive about this disease, i have no idea if he is a good candidate or not for the surgery. i don't know much about his specific type of epilepsy. he already knows that monday's meeting with the doctor is a FAMILY meeting, so i am hoping to get some answers and some more information.

JodiBabe Posted: Mar 13, 2004 12:06 PM

Re: Anyone have a family member/friend who has epilepsy??

I ALWAYS felt it was better to tell anyone that I was around about my seizures so that if I did have one they would know what it was & what to do to keep me safe if necessary.

karen32 Posted: Mar 13, 2004 12:07 PM

Re: Anyone have a family member/friend who has epilepsy??

Posted by JodiJohn903

I ALWAYS felt it was better to tell anyone that I was around about my seizures so that if I did have one they would know what it was & what to do to keep me safe if necessary.

that is the difference between men and women!!!! he has so much pride, he can't bear to tell people he has it, he thinks it makes him 'weak' or something.

BriarRose Posted: Mar 13, 2004 12:17 PM

Re: Anyone have a family member/friend who has epilepsy??

Karen,

MY dad hada seizure a few years ago on THanksgiving. He hit an off duty cop on his way home. THANK GOD No one was killed.
Or seriusly injured.
THe DMV took my dad's license, until he could go 1 year without a siezure. He did and got his license back.
But in the years previous he's had them at the Supermarket, on Christmas day, etc.. and I'm always there, and when it's over he does not even know who we are. It takes him several hours to get his memory back and then he several more for him to understand that he had a siezure. He just walks around saying why does my back hurt so much, and what time is it over and over.
He's currently on Dilantin, he takes 4 pills a day 4 times a day. If he forgets a dose or celebrates (drinks) to much, he'll have a siezure. I worry that he'll have one when no one is home while he's walking down the stairs and hurt himself or that it will happen again while he's driving.
My father has Grand Mal siezures they are pretty violent. However they are completley controled with his meds therefore not making him a candidate for surgery.

RedHead Posted: Mar 13, 2004 04:01 PM

Re: Anyone have a family member/friend who has epilepsy??

Posted by JodiJohn903

I started having seizures at age 3 and have been on EVERY medications except some of the very new ones. I currently take Tegretol XR & Keppra. My seizures were never fully controlled until I had surgery in 1997.

I went for 3 years after surgery with no seizures so the Dr weaned me off of the Tegretol XR that I was taking to see if I could do without it but a week later I had 6 seizures so I went back on it. Then about 5 months later I had 2-3 more seizures out of the blue so they added the Keppra and again I have been seizure free for almost 3 years now.

It would have been nice to not have to take meds after my surgery but if taking meds keeps me from having seizures then so be it.!

In my opinion NO ONE that has seizures should drive! By doing so they not only put themselves at risk but also everyone else around them and that is selfish!!!!

Who is your dad's neurologist?

Oct - why do you say stay away from Tegretol?

Karen, if I can help in anyway please feel free to ask.

Jodi

I have seen a lot of side effects from Tegretol.. I have noticed people straying away, same with Depakote, osteoporosis problems
Keppra is a highly recommended relatively new seizure med. I think the lab that makes it is in Commack!

I have sen good results with Dilantin too

JodiBabe Posted: Mar 13, 2004 04:07 PM

Re: Anyone have a family member/friend who has epilepsy??

I was on Dilantin twice & no luck for me.

There are some side effects from Tegretol as with most meds but nothing that I haven't learned to live with having been taking it for almost 30 years.

soon2bmrs2004 Posted: Mar 13, 2004 05:01 PM

Re: Anyone have a family member/friend who has epilepsy??

Almost two years ago I had brain surgery to remove a brain tumor from my font temporal lobe. Becuse of the removal of the tumor I have developed a seizure disorder. I do not have eplisey.
I am currently taking a medication called zonegran to help. I have taken dilatin and depokate all of which did not work and left me feeling extremely tried and weak.
I agree that the key to controling your seizures is finding the right medication and sometimes that means having to switch because your body is so used to the other medication.
Best of luck to your Father and I wish hime well

Jen_n_Dale Posted: Mar 13, 2004 07:37 PM

Re: Anyone have a family member/friend who has epilepsy??

Yesssssssssssss. My uncle, who also was in car accident while having a seizure. Totaled his car and thankfully was ok. And also Dale's dad has it. Dale has seen him through some difficult seizures. I know he said it was very scarey. One of the reasons why we aren't doing heavy lights at the wedding. We don't want to trigger it off.

JodiBabe Posted: Mar 13, 2004 07:39 PM

Re: Anyone have a family member/friend who has epilepsy??

I have to say that lights never triggered a seizure for me.

anna Posted: Mar 13, 2004 08:10 PM

Re: Anyone have a family member/friend who has epilepsy??

Karen, just wanted to send you lots of hugs.

I know how strong you are, and youre daddy is VERY lucky to have you

JodiBabe Posted: Mar 13, 2004 08:12 PM

Re: Anyone have a family member/friend who has epilepsy??

Anna how are you doing?

karen32 Posted: Mar 13, 2004 08:13 PM

Re: Anyone have a family member/friend who has epilepsy??

we didn't do lights at our wedding either. my mom didn't think it would be a problem, but i know my dad has problems with certain video games (anything with sustained flashing), so i didn't want to take a chance.

my mom and i had a long talk today - we are going monday armed with questions for the Dr. i am assuming the next step is probably a change in his medication - he says at his last visit the Dr. mentioned a new medicine, but since my dad was operated on for colon cancer last november, the Dr. didn't want to change anything until after the surgery. right now he is on Dilatin and LaM - something or other. my mom couldn't remember the exact name.

karen32 Posted: Mar 13, 2004 08:13 PM

Re: Anyone have a family member/friend who has epilepsy??

thank you anna for the well wishes!!

more importantly - when is that baby coming out??

JodiBabe Posted: Mar 13, 2004 08:16 PM

Re: Anyone have a family member/friend who has epilepsy??

Karen is the other Lamictal?

karen32 Posted: Mar 13, 2004 08:17 PM

Re: Anyone have a family member/friend who has epilepsy??

yes it is!!!!! thank you!

JodiBabe Posted: Mar 13, 2004 08:18 PM

Re: Anyone have a family member/friend who has epilepsy??

No problem! I once took that.

JodiBabe Posted: Mar 14, 2004 01:36 PM

Re: Anyone have a family member/friend who has epilepsy??

Karen,

Keep us posted on how the Dr visit goes tomorrow!

Jodi

karen32 Posted: Mar 14, 2004 04:27 PM

Re: Anyone have a family member/friend who has epilepsy??

i will!!!! thank you!!

karen32 Posted: Mar 15, 2004 10:28 AM

Re: Anyone have a family member/friend who has epilepsy??

okay - we just came back from the Doctor. i'm not super-happy, but i guess we have to make small steps. the first thing they want to do is increase his Dilatin. he currently takes 4 a day, the doctor would now like him to take 4 a day on even days and 5 a day on odd days. apparently 6 months or so ago, my dad was taking 5 a day, every day, and his Dilatin levels were way too high. i am not really confident that adding 1 more Dilatin pill every other day is going to help that much.

i questioned the Doctor about the surgery and he indicated that he did not think my father was a good candidate. the surgery was more designed for people with seizures everyday - i said at the rate my dad is going, he is going to start having seizures everyday! i pushed a little more - and the Doctor agreed to have my dad get an updated MRI. that would be the first step in determining whether or not he is a good candidate.

so for now - we are going with adding one more Dilatin every other day. we are going for the MRI this weekend. other than that - the Doctor just wants to see him back in 3 months.

driving is out for the forseeable future - personally, i think he is done forever with driving. he is very blue about that, he feels like he is a burden to everyone else. the only good thing about this whole mess, is that my dad and i have really started to talk and bond. i guess that is the bright side.

for now i guess we just play everything as it comes. i am trying to be optimistic that the extra Dilatin will do the trick.

thanks everyone for letting me share - knowing you guys were here made this much easier!!!!