Confused And Trying to Cope

Hey cook
I had my first grand mal in march in 98. 2 months after I left my first husband. Iwas having the small auras for about 20 yrars off and on after a car accident in 77. But idid'nt know what they where, never thought about going to a doc. Never had ins when I was married for 19 years. When they where coming more frequent in the late 80s I thought is with the smoke I was smoking. So after doing that for another 6 or 8 years I stopped. Well they kept getting stonger and coming more at the last couples of years of my marriage.
So this is what my aura is like, funny smell, metal taste, stomach ache, feels like i'm going to have a bowel movement but I don't, deja va, hearing sounds weird, can't respond, and last for about 1 minute. My first grand mal I had a aura before. I know a min or so before I have the aura. One more thing my body feels real strangd inside.
4 neoulogists ask if I would consider b.S. After trying different meds and losing my job and cant drive anymore. Idecided to go for the brain surgery in june 2002 at u.C.Davis. Im back to work at my old job, not the postition, manager &clothing buyer at retail store. But itake the short bus to work 2 days a week 5 hres a day. Talk to people again. Its all good. And i'm talking to you to get you trough it.
Do you have a family? Write me back. Jamie oroville ca,

I know what you mean by sensing that you are going to have one I just feel weird a lost feeling inside like im there but not really there. I have lots of family here and they are a big help, but you see its hard for me to get help from others because in my 1st marriage I was so dependant on him for everything, he was abusive and very controling and I left him for various reasons. Then I learned to live and do things myself and now its very hard to be dependant when I was independant for 3 yrs and they understand this and im trying to cope with the fact that I need to well depend on them the worse part I think is I havent been able to work in 6 months and its driving me crazy I mean I love being with my kids (b-4 g-7) and getting them off to school and all that but it just gets old the 1st meds they put me on was dilantin and now im on depakote and I go through mood swings and depression and I want to change meds and I dont know what I can go on next cause these are sort of controling them I mean in the begining I was having 8-10 seizures a day and now its like 1-5 a week so its doing good but I hate being like this I want to be normal again know what I mean. Cook

Hi cook
i'm glad to hear from u. I tried dialatin 2, had to many side effects. I was also on depakote for 2 years. I gained about 25 lbs., mood swings, siezures were getting worse. After trying alot meds i'm now on topamax for the last 3 years with keppra. Keppra is a new one they just put me on for the last 6 weks. So the doc. Keeps playing around with my meds too. Its the norm i'm finding out reading up on us eps and talking to the 2nd doc. At san. Fran. Ca. Neuo clinic when I was first diagnosed 6 years ago this march. Thats when he said would u consider b.S.. I thought he was nuts.
Back to how u feel when u have a aura, please explain it 2 me in detail what happens 2 u. No one goes into it.
U will find out u will be a stronger person, u may think its hard 2 get thru the day with children. But later when your children grow up you will look back and wonder how did I get thru this. I don't know if you beleive in god but he is real. Just keep praying he is listening.
I'm back 2 work a couple of days a week, still not driving. But i'm still here. Now i'm going to be a grandmother this feb. So you hang in there.
You must enjoy cooking cook.
I hope you enjoyed your thanksgiving. Jamie

I dont know if things are getting better or worse everyday is worse then the day b4 I think anyways....I enjoy being with my kids but I also love my job and its very hard not to be working or even driving its like takiing your life away not being able to drive......Anyways to describe what I feel like is like saying im in a room with people talking family or who have you and then all of a sudden it feels like all my muscles in my face are relaxed and its like im there but not I can hear ppl talking and I know what they are talking about but cant make sense of it so I just nod my head like I know what they are saying I feel naseous to my stomache my body feels like its been awake for weeks on end I cant move unless I have what I call a muscle spasm I cant control what is happening to my body and that is freaky to me afterwards I have a slurred speach like if I have been drinking a lot I have difficulty walking I walk like im drunk for about an hour afterwards im lost I dont know whats going on I cant say how long these last I figure about 15 min sometimes longer sometimes shorter it just depends on what I have done I cry almost everytime I have one it just happens I dont want to or mean to cry it just happens and I now just keep to myself and stay home when im and active person I love to go and visit and just enjoy life and now it just dont seem possable cause ppl look at me weird when I have one around them they just freak out one person that really helps me is my cousins wife she has had them in the past and I can talk to her about it whenever I need to she knows how I feel and it helps me a lot to talk to her and to everyone on here its just messed up to have them and feel like an outcast cause ppl dont understand whats going on including me they switched me from depekote to keppra the last dr visit cause I lost a lot of my hair and gained like 80 pounds which sucks and since I have changed meds I have lost 7 pounds which is good but not good enough for me well hope to hear from you soon cook

Hello cook
I told you they put me on keppra last nov. I have lost 10lbs since. When I was on depakote I gain about 25lbs. So its sounds like your chin is up.
I gave notice on the 20th of dec. My last day was the 30th on dec. Alot of reasons. The owner is semi retired. He is indifferent to me sivne I came back. The store is not running the same way I would have wanted to be runned. The women is 28 and I am 44. But the best part of it since I have been there for 7 months I have ran into so many ppl that have epy. I'm like a magnet to them. So now I have my phone book with # and names and I want to get a support group here in my town. I guess I had to go back to brown & co. To find out what I really want to do in life.
Back to coping with not working or driving, it does get sucky not being able to get the car and just to go the store. I get down sometimes about it. My friend had to go to a meeting in chico so I had her drop me off at the mall so I can do some shopping while she was at her meeting. That felt so woderful. I was suppose to go with my mother tomorrow and shes pissed off. I tried to explain it to her and she still does'nt get it.Oh well. I'll talk to later take care. Jamie

I have been on this med for almost 2 months now not too sure that its working good for me although the doc told me the main side effect is health forum and thats about it at least I dont have that thank god for small miracles. I think that my dosage should be a lil bit more cause they dont seem to be controling them very well or maybe meds wont take them away and that is what I am hopeing for and that prolly wont never happen but I aint that hopeless im gonna fight this thing if its the last thing I do I hate feeling this way but who does I have some family members that I can talk to about the seizures that have them although they are not blood related they only married into the family but its so nice to have that support and that helps out a lot not to mention talking to complete strangers on here and asking questions but anyways how did you feel since you have been on keppra? Does it make you feel tired sometimes and then wired others? Cause I get like that and then I get to where I dont shut up and all I do is talk ppls ears off anyways I need to go cause I just aint feelin to good sittin in front on the computer, thats another thing do you tend to have more sitting in front of the computer or watching tv? Hope to hear from you soon cook

Hey cook,
i'm so glad to hrar from you. Yes ido talk to much. I'm wired and then i'm tired. It's the meds. Topamax makes me wired too. I havent been driving for 4 years. Last may I drove for 3 weeks then I had a big one. I told my doc. So I soppse to wait 6 months. But its to scary to think about having a small one then going into to a big one when i'm driving. So I just try to deal with it.
My oldest is having a baby next month. My youngest started college last week. So things do get better. Talk to later. Jamie ruff_ jamie@hotmail.Com

Hi
im joe. 27 and having to make peace with having epilepsy. Had it since I was 13 but maybe once a year, sometimes even less. The epilepsy's due to an anuerism I was born with. It got removed last year. The op was succesfull. But im stuck with the epilepsy. I had 2 grandmals in jan 2004. Im scared and confused, and angry. Any one have ideas on how to cope? I m making a mess of my personal life. Fighting with my boyfriend and just being a general pain to be around with. Feeling bad, got to get of the pc. Will check messages later. Joe

Hiya joe
I dont know what to tell you cept to put it in god's hands I have faith that things will work out for you I know its tough and I aint had it nearly as long as you ive had them about 6 months and I hate having them although I dont have grand mal but they are still tough and hard to cope with im just lucky I have a very loving and understanding family and they have helped me through a lot of tough times and I thank god for a loving and understanding fiance that has been there from day 1 and has helped me through the times when I dont want to take my meds and through the times that I get down right health forum at him and all he is trying to do is make things a little bit easier on me and I feel awful when I realize that I have been such a health forum towards him but he understands and knows that its mostly from the meds and that I just cant cope with having to rely on ppl to take me to the store or to have someone stay with me while he is working ( it was either that or move in with my parents so I chose the later ) but I manage and try to live a normal life and just live one day at a time I thank god for the days that I dont have one and sometimes just want to curse him for the days that I have 10 in a day but as my dad keeps telling me well one thing is to always keep my chin up and 2 everything happens for a reason all I know is today is a good day and I am taking it for all its worth cause I never know whats gonna happen tomorrow and you cant live for tomorrow cause you dont know whats gonna happen you can only live for the day you have and treat that day as you would if you didnt have them I think the hardest part is my kids haveing to deal with me like this they are 7 and 5 and they dont understand whats going on but I have explained it to them the best I can and for them thats good enough they know when im sick and they help me out a lot to and the way I feel is if ppl dont understand what you are going through then how can they help you and if they truely love you then they will stand by yourside no matter what well I need to go now cause I promised the kids we would watch a movie together and they picked the lion king so I need to go hope to hear from you sometime cook