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

karen32 Posted: Mar 12, 2004 04:09 PM

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

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

xjulietx Posted: Mar 12, 2004 04:11 PM

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

A close family friend who is like a cousin has it and it has made weddings and parties difficult because of strobe lights and pounding music. I don't have much other info or experience with it

for you right now!

BMD'sPeanut Posted: Mar 12, 2004 04:25 PM

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

what do you need to know?

karen32 Posted: Mar 12, 2004 04:28 PM

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

he's just having a really bad day with it (got into a car accident this morning). i'm just feeling very blue and wondering how other people handle it.

NYCMeghan Posted: Mar 12, 2004 04:35 PM

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

I was in the hospital last month with a seizure disorder - not epilepsy, but similar. I'm currently on anti seizure medicine. Not sure what I can provide but FM if you have questions or want to talk.

BMD'sPeanut Posted: Mar 12, 2004 04:39 PM

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

i sent you FM

fallin04 Posted: Mar 12, 2004 04:46 PM

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

karen32 Posted: Mar 12, 2004 04:51 PM

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

thanks ladies - i FM'd you back.

mishandgerard Posted: Mar 12, 2004 04:59 PM

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

I have epilepsy. you have fm

fallin04 Posted: Mar 12, 2004 05:03 PM

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

FM back

JodiBabe Posted: Mar 12, 2004 05:52 PM

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

Karen,

I have it and always willing to talk!

Jodi

OctGroom Posted: Mar 12, 2004 05:59 PM

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

I know someone who has a seizure disorder (very similar to epilepsy) and they are on a drug called Dilantin which has been very effective against it. Knock wood. Praise God.

All the Best to you and your family!

RedHead Posted: Mar 12, 2004 06:43 PM

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

I have some knowledge of epilepsy..If you want FM

BriarRose Posted: Mar 12, 2004 07:39 PM

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

You have FM. I've been where you are.

JodiBabe Posted: Mar 12, 2004 08:18 PM

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

karen,

Did you have any specific concerns?

karen32 Posted: Mar 13, 2004 09:10 AM

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

thanks everyone for reaching out to me - i really appreciate it!!

octgroom - he is on Dilatin and another drug - i think it starts with an M -

jodi - thank you so much for your offer. i will definitely take you up on it. i have about a zillion questions!!!!

essentially at this point - his medicine is not effective as it once was. about two years ago, while doing some home construction, he fell out of the attic and broke two of his vertebrae. he has never been the same. since that point, his seizures have been more frequent, and more severe. we are pretty much at the point that he can not drive at all anymore (not even to work - which was 1.2 miles away from home and really the last place he drove to). he is not taking it well at all!!

monday he is going back to his neurologist to look into other options. i am going to try and spend the better part of this weekend doing some research. i am been seeing some information about a surgery - i want to look more into that option.

thanks everyone! you really have no idea how much you all mean to me by reaching out to me like this!!

Karen

Jax430 Posted: Mar 13, 2004 10:30 AM

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

My 4 1/2 year old nephew has a seizure disorder. He has been on medication for the last few years. It has been difficult for my family to deal with. Please FM me if you want to talk.

RedHead Posted: Mar 13, 2004 10:36 AM

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

Sometimes peoples seizures are VERY hard to get control over and not always is it the miracle drug. But there are a wide variety of them, Dilantin is a oldie, Tegretol (don't go near it), Depakene, Phenobarbital...I have a bunch more at work. Sometimes it is about finding the right combination!

Good luck i know this can be a very hard thing to deal with...If you want a person to talk with i am here

ps..i work with a neurologist and if you want me to ask him Q's let me know

JodiBabe Posted: Mar 13, 2004 11:38 AM

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

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

karen32 Posted: Mar 13, 2004 11:46 AM

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

Jodi - congrats to you on being seizure-free. that is incredible!!! i am hearing more and more about this surgery - i am definitely going to ask the neurologist on Monday if that is an opinion. he goes to Dr. Winnick - I think it's on montauk highway, in islip.

i completely agree with your opinion on driving!! my mom drives 99.9% of the time, but for the 1.2 miles that he goes to work, he was adamant that he could do it himself. i think a lot of his male 'pride' has really prevented him from dealing with this disease effectively. he will not tell ANYONE that he has it - only immediate family. he would be beyond mortified if he knew i was discussing it with everyone on here.

my goal for today is to do some research - i really want to be prepared for monday. i want his doctor to discuss ALL of the options with us. my dad probably never even considered the surgery to be an option, because then he would have to miss work for a few weeks, there would be questions by his co-workers, etc. i think only his immediate boss knows, as my dad used to travel a lot with work, and there was always the issue as to what would happen if he had a seizure while he was away.

i feel a lot better today. thank you all again for responding and sharing so much with me.