I need your help NOW more than ever...I need my band of friends who understand!! - Epilepsy Message Board

KittyMom · 06-14-2003, 10:34 AM

Hello everyone,

This is going to be kind of long so please stay with me! I need you all so much right now! I need a ralley of people who understand and can help me from "understanding" and not a text book summry.

I am so upset right now. I am crying as I write this (that isn't easy). I had 2 seizures night before last (Thurs. night) and one of them I had no idea about until my kids told me right before I went to work. I said that I was a little down from the seizure and appoligised for not talking much and they said, "Seizure? You mean 'seizureS'"! They told me what I did and said and then I went to bed. I remember going to bed but not missing any time. I felt worse then. I went to work and was having my 'mini' deja vu's all day. I debated about telling my new boss about the "E" but decided against it for now.

I left work and was driving home. I got less than one mile from my house and had a 5 second dream like state and then that was it. Not my usual extreme fear deja vu's that come before my seizres but just a mini dream like thing but I was still aware of what I was doing and everything. I reminded myself that I had to pick up dog food later and then that was the last I remember.

I came to on the side of the road but was still in my postictal state. I tried to drive the car so I could get home but it wouldn't move. I got out of the car and noticed that my left front fender was dented and scratched pretty bad. My front lisence plate was damaged and then on the passenger side I had a cement pole like thing under my car and the car was high-centered on it. I still didn't get it. It started coming to me that I had just had a seizure. I then started walking home. I didn't want to use the persons phone where I was parked because I was still a bit confused and didn't want to use a strangers phone in a strangers house when I didn't have my wits about me.

Half way home a cop pulls over on the side of the road in front of me and gets out. He comes jogging toward me and when he gets to me he askes me if I am ok. Not just a question but when he asked me he was VERY CONCERNED. It was genuine! (Go figure, right?) I immediately started crying and told him that I thought I had just passed out and my car was stuck. He put his arm around me and told me that some people reported an accident. Apparently I had made a wide turn and went off the road. I took out (ran over) two mail boxes. Not your ordinary mailboxes with the thin mettal pole but ones made from stucco and cement. They are THICK!! I didn't hit a person or an animal, but ran over two thick mailboxes.

He asked me about 'passing out' and I told him that I had epilepsy and I must of had a seizure. Next thing I knew there were ambulances and a fire truck there wanting to take me to the hospital but all I wanted was my CAR!! The called my husband and he came down. He wasn't even the slight bit mad at me and he still isn't. What a great guy!! The only reason that I am still driving is because my seizures are very routine. I get a 30 second deja vu accompanied by fear and then I know its coming. Its like clockwork...it never fails. It is ALWAYS the same thing over and over again. I won't be driving anymore!! NO WAY!!

I feel miserable. I need some friends right now....Thats YOU!!! Please don't think you have to solve anything I just need to hear from you all. I need words from people who travel my "E" road. I love you guys!! You are the best!!

God Bless you all,

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

teresa34 · 06-14-2003, 11:57 AM

Leigh Ann
I'm so sorry, what a rotten break! You can take comfort in the fact that no one, including yourself was hurt, and who the hell cares about the mailboxes!

Your seizure pattern seems to be changing, and you need to talk to your neuro, I know you've been having med adjustments lately, apparently not for the better.
I too drive, as my seizure pattern is very predictable, very long visual aura. My last sz was the only one that broke the pattern, it occured in my sleep. Considering I don't drive in my sleep yet, that didn't concern me.

Will you still be able to get to your job? can someone give you a ride?
You should consider telling someone at work, if you have a sz at work, no doubt you will end up in an ER! I hate that, I remember when I had one at work years ago, I was still doing hospital nursing then. I had one on the floor I was working and hit the floor head first. My co-workers loaded me onto a gurney and took me down to the ER. I was so goofy after that one, had a concussion combined with a post-ictal state.

My current employer knows, I told them if they send me to an ER I'll kill them when I get my act together again!
Hang in there girl, we all know it...
Teresa

violarose · 06-14-2003, 01:13 PM

is that our worse fear, being sent to ER. oh are they sick of us yet?? it doesnt seem that way because the ER nurses and doctors are so helpful and kind. but please dont send me to ER, just let me go home to my couch

((((((((((())))))))sounds like a very very scary time for you. being in a car accident and having a seizure. have you contacted your doctor about it yet? I am just sorry that you are going thru this. it would be cruel of your husband not to understand, it must be very scary for him too. you should not be held accountable at work if you have seizures. they can not hold that against you. please thnk about telling them, you dont want to freak them out if you have a seizure at work. do u wear a medical bracelet? lots of hugs and support. seizures suck big time, its not fair. good luck, and come back and tell us how you are feeling. (()))

KittyMom · 06-15-2003, 08:50 AM

Thank you Teresa and Violarose for your responce. I don't feel much better today. I think you are right when you say that my siezure pattern is changing. I didn't even know it could do that. Is that bad? Is it getting 'worse' so to speak? I don't feel like my normal self lately. My brain is doing funny things to me where sometimes I think I am literally loosing my mind. I had my aura lastnight and I knew for a fact that I would be going out. I told my husband and he was there with me but I never went out!! Strange!! I have never NOT gone out after an aura like that. I kept waiting for it and waiting for it but it never happened. This morning I woke up with this horrable feeling. I can't describe it really. It was like I had just 'popped' out of a seizure. I was confused and scared and worried. What is it like and how do you know you had a seizure while you are asleep? I have complex partials and I didn't think you would be able to tell if you had one while sleeping. Can you? If so, how do you know you have just had one??

Thank you for your concern ladies. You are so sweet! I wish we all lived close to eachother and then we could all get together and have brunch or coffee or tea at eachothers houses. That would be so nice to have people around you that have been there and are there all around you. My current friends just don't understand at all and it is nice when someone can relate to you. (Heavy sigh)

Anyway, I had better go. Keep writing and please let me know how you know about seizures while you are sleeping. Thank YOU!!

God Bless you all, ((((())))))

KittyMom (Leigh Ann)

LainieWebb · 06-15-2003, 09:00 AM

Earlier this year I thought my seizure pattern was changing... started having more auras (mainly anxiety/panic type feelings) and more frequent deja vu, which scared me. I got a new neuro, had to adjust my dilantin level (i.e. increase). Took about a month for my body to fully accept the new level. I was spacy, and felt generally a bit odd.
If my memory is correct, you are recently diagnosed with epi? When I was first diagnosed I did not know what to think, or if I could go on as usual. No driving for a year, birth control issues with my dilantin, no drinking (even though I rarely drink). Aside from the issues I listed, I felt like total crap from 3 TCs in 1 day and getting used to the dilantin.
Perhaps you should take some time off from work (get a note from your Dr) just to regroup. Give yourself a break, you are going thru changes that nobody completely understands - especially the Drs who haven't actually experienced seizures.
This got long, but the point I was trying to make is that, seizure patterns can change. You can have complete control and then anything (or nothing) can trigger a change.
Good luck to you (and all)
Lainie