My wish didn't come true....
 

Hi everybody

Boy am I glad I found this. Well as most of you know back in May I started to decrease my meds and then in June I spent a week in the hospital for a study. I made it, I didn't have a seizure. I thought I was on my way.

Last Monday my worst fear came true, not only did I have a GM, I had it while I was driving. So now I'm worse off than before. I remember having a sensation take me over when I was making a left off of the main highway onto a side road. The next thing I know I woke up in the back of an ambulance on a backboard. My son is a volunteer firefighter and I recognized the person standing over me and said his name. I said I was Robbie's mom, he immediately called Robbie on his cell phone to say he had his mom and was on the way to the hospital.

I ran off the road and into a sign at a gas station. Somehow I got stuck on a curb but my foot was stuck on the gas pedal. My mail lady jumped into my car and threw it into park and took the keys. And it just so happened when I come flying across the intersection I fly right in front of the ambulance who was going on another call. I can't even begin to say how lucky I am, I didn't hit the gas pumps or the people at the gas station.

Hi my name is Michelle and I have Epilepsy and I will learn how to live with it for once and for all.

Thanks for allowing me to vent.:(

Hi Michelle,
I'm so sorry that you had a seizure after decreasing your meds. That sounds so frustrating and very disappointing. I wish it would have worked for you to stay low and/or off your meds. I know how discouraging that is when you get your hopes up like things are getting better and then something like this happens. I'm glad that you're accident wasn't worse. Hang in there. There are a lot of us who are living the same way.
mercy

I'm so glad that you weren't badly hurt and that no one else was. I know how depressing it is to have a seizure just when things seem to be going so well. What happens next?

What happens now? I've already seen my neurologist, they were heart broken for me. Before stopping all meds I was taking 1000 mgs Keppra and 800 mgs of Tegretol. The hospital put me back on Tegretol and I felt like crap. I was at 11.3 in no time.

After seeing my neuro, she placed me back on Keppra and off of the Tegretol to get my levels balanced out some. I will start the Tegretol this week 200mgs before bedtime and gradually work my way up.

My husband hasn't brought my car back home yet. There wasn't any damage so thank goodness I don't have to report it to insurance.

And now I go back to work tomorrow to a supervisor who could care less about my Epilepsy. She doesn't understand and she doesn't care to understand. She is the reason I went off of my meds to begin with. She couldn't deal with my memory problems. So life is great, I can't drive and I have to go back to work with a person who is so self centered it isn't even funny.

I wish I could just stay home.

:( Oh Michelle -- That just sucks. I am so very sorry.
Nancy

Howdy Michelle!

Welcome!

Did you ever think about looking for other employment on the sly?

First welcome to the site. Hoping we can give you some support.

Next please take care of yourself. If your doctor says you cant
return to work. Then your supervisor has no real choice at this
point but to let you take a leave of absence.

I would work with the doctor and the medicines, see if you can
find something that will work.

You might look into trileptal it has less side effects than tegretol

Donna

Hey Shelly :)

I am so sorry you had to go through such a thing, but I am happy both you and your car (and the gas station/people) were all unharmed. I know it's an awful feeling when you think, "Whew, they're gone" and they make a comeback with a bang.

I'd suggest talking to your HR department regarding your co-worker, if you feel too 'shy', ask a family member to contact them on your behalf. Heck, I will! My former job went out of their way to make me feel 'stupid' and I finally left.

Keppra did that to me, also - and my memory (or lack of) so I understand. I'd made a post about dealing with the memory loss because it's small things that add up and you just feel 'blue' about it.

We're all here to help.

-Ellie

PS: *Hugs*

hey Shelly,
long time no see.
I know that sucky feeling, sorry it happened to you.
Is there some reason they have decided to go back to the tegretol after it messed with your memory before ?

Its been so long since I have talked to you that I dont remember if you have tried other meds. There are some.. lamictal is one that comes to mind, that usually wont mess with the memory so much. You have to go really slow getting your levels up on it, but it might be worth a shot.

I hope things improve !
Pam

Guess that one thing that we all have to keep in mind is that, no matter how long any one of us has been seizure free for, there is always the chance that a seizure will hit. I've been seizure free for 2 1/2 years now and I know that, every day, there is a chance that something will go wrong. I remember when I had my first long seizure free spell (seven months) and I used to wonder how long I would have to go without a seizure before I could stop thinking of myself as an epileptic. I now know better. You managed to get your seizures under control once - you can do it again. And don't pay attention to anyone who doesn't understand. Just shows their ignorance.