Hi Linda,
I ache for you and I surely know what you are experiencing
and feeling about this. Sixteen years is a long time, and
many of us here can certainly relate to that. Your note caught
my attention particularily since you said your daughter id in
NC. That is where I have lived now for 5 years. Previously I
was a New York resident forever! I am glad you found another
doctor who seems to be helping more. I would encourage you
to effort to find even another neurologist, and get a second
opinion on weather you should be completely off drugs since
you are still having seizures. I had the brain surgery for
this, and it completely stopped all seizured during the day.
However, I do get seizures when asleep so I am still on drugs,
presently Lamictal. I am super glad I had the surgery though
since it made it so much better and a big thing was that I was
able to get my driver license back, which I had lost as a teenager.
Good luck with anything you may do, and remember we are here to
listen and keep in touch.
Doris
--- In epilepsy@yahoogroup
>
> I am 58 yrs.old and I have had seizures for 16 years. My first seizure was a grand mal which I had in Hilton Head, S.C. I was down there visiting my daughter in N.C. and we went there on a trip. When I went
> home I went to a doctor in Columbus, Ohio that put me on so much medicine that I was like zombie. I felt terrible and I still had seizures. They were worse then they are now. They had me on alot of depression meds that I couldn't take and Neurontin made me gain about
> 30 lbs.
> The doctor also tried cyberonics with me too , to see if that would help my partial complex seizures and it didnt work either. It
> {the device would turn over inside my chest cavity after a time and I
> decided to have it taken out. It did not wok like it should have with
> me anyway. It was in for two years. I left the doctor in Columbus
> because he up and left the hospital and I had to find another doctor.
> I found another doctor within 30 miles of our home and he got me off all the meds I was on onto no more than absolutely have to take. I feel much better now. I still have seizures. I guess the doc told me they either come from stress or hormones and there is no other explanation.
>
> Other than this I gave up driving becase I never know when my seiz. are going to happen. Sometimes I have an aura and sometimes they come on so fast that I just go out like that! If I am lucky and my hubby is there he helps me thru them and I'm fine as long as I'M
> sitting down. Otherwise I will fall down like in a faint, maybe say
> stupid things . I'll be out for maybe 10-15min and not know nothing about it. I've fallen flat on my back and my face and I end up with quite a few bruises.
> . Getting used to having seizures waas very hard and still is. My
> friends I had I don't have no more because they can't handle them.
> I am in Friends of the Library group and they said oh don't have aseizure on us like they could no handle it. It made feel like I
> didnt want to be there. I am still amember but it is hard sometimes.
> I just feel I need to talk to other peole who will understand what I feel. Sorry for such a long letter. One thing I am thankful for is that Ihave such averypatient and loving husband. Linda
>
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