I've been diagnosed with partial onset seizures that, apparently, occur
frequently and have been occurring for about ten years. Over the last
couple of years I've had enough seizures of greater severity to get me to
the doctor to find out what was going on.
Sure enough the neurologists were finally able to spot the seizure activity
with EEG tests. After a couple of awful false starts with other
medications, my doctor put me on a medicine called Keppra and Voila! It was
like someone turned on the lights. In a matter of days I noticed I was much
more "present", thinking more clearly, remembering things, and not having
the spells of confusion, numbness, visual patterns, and olfactorial shifts
which, I understand now, were symptoms of the seizures.
I've also been on a modified diet for several months and that, in concert
with the Keppra, has made a huge difference.
My question, though, is more about general lifestyle and might best be
answered by parents of epileptic youngsters who've experimented with
different behavioral/environmental ideas. I am 45 years old but I'm newly
diagnosed and still learning ALOT about my disorder, its treatment (and the
impact it's had on my life in areas I never even thought of).
I am finding I tend to crave a routine, structured, and rigorously ordered
lifestyle & environment. I am more productive, I feel "brighter", and I
have this weird sensation of "feeling safe" when my daily routines and
environments are simpler, more structured, and more austere (for lack of a
better word).
Is this related to my seizure disorder? Do others experience these same
needs/sensations? Do kids with this condition seem to do better when their
lives are rigorously structured and routine?
I was just wondering if more intensely simplified and structured lifestyle
plays a significant role in managing the disorder?
Steve
Sofia - 27 Aug 2005 20:54 GMT
> I was just wondering if more intensely simplified and structured lifestyle
> plays a significant role in managing the disorder?
I doubt it! I'm wondering if you, like me, were given an extremely high
dose of drugs to begin with, perhaps 2 or 3 different drugs too, which may
have doped you up so much that you couldn't think properly. This
medication may have also had powerful after-effects too, which clouded
your thoughts and vision of the world.
Nowadays, at the age of 39, I am only on keppra and tegretol, and also on
much smaller doses of medication than when I was in my teens. This means
that I think much clearer than I used to because I'm just on much less
drugs - probably my neurologist doesn't think they're as severe as they
used to be.
As for lifestyle playing a significant role in the way your medication is
taking effect, my lifestyle has been pretty much the same since I married
at the age of 21, but I was even completely doped up in those days too.
I only really began to "think" clearly again about 3-4 years ago, but my
lifestyle still hasn't changed - just my thinking and medication.
Sofie
ToddyK - 18 Sep 2005 00:42 GMT
> I've been diagnosed with partial onset seizures that, apparently, occur
> frequently and have been occurring for about ten years. Over the last
[quoted text clipped - 32 lines]
>
> Steve
Accepting the disorder and finding its place in emotions. Managing my
disorder took time because I didn't understand or like being disabled
after being in grocery managment for eighteen years. I was used to
working or being constructive with my abilities even as a child. But
epilepsy should not hold anyone back, the Epilepsy Foundation gave me a
place to put my labors. A volunteer in fund raising events, school
counceling and a camp councelor for children with seizure disorders.
That alone gives my life a new purpose where grocery managment once
ruled. We should live strong orderly lives to control our condition the
best we can and then accept the lives we have to live! And enjoy them!
Someday I may be back in the retail world but I will not stop being
constructive. Todd Matthew Kozuszek
ToddyK - 18 Sep 2005 02:35 GMT
> I've been diagnosed with partial onset seizures that, apparently, occur
> frequently and have been occurring for about ten years. Over the last
[quoted text clipped - 32 lines]
>
> Steve
I have had a seizure disorder since I was five years old and my labors
with the EFCO @ WO has been very strong since my neurologist placed me
on disability in 2002. I've worked hard my entire life in grocery
management since I was eighteen years old and now I'm thirty-seven. And
accomplishing a goal is something I have to be working at. My work with
the Epilepsy Foundation has given me a new goal to acheive. And it's not
just for me but for the children who will take my place in due time.
It's the future I work for and I worry about our condition concidering
our future. I have to have a goal to work toward.
Todd Matthew Kozuszek
E.B. - 18 Sep 2005 06:42 GMT
Just to add my real-life experience, if it helps any:
I have had seizure problems since I was 11 years old. Now I am 41.
Now, I don't seek sympathy or have self-pity, so don't take me wrong.
Epilepsy had a great effect on everything in my life I wanted to do,
and 2 ex-wives just couldn't handle it and gave up on me and I don't
blame them. Its been hard on my family just trying to keep me upright
on my feet, and it limits my relationship with my 10 year old son. It
affected what career I wanted, and when it got worse in the early '90s,
just sent me spiraling into major depresssion.
I wasn't able to do anything from 1997-2004, until I was assured and
confident all of my seizures were under control. I have been on
disability for 8 1/2 years, but I went back and finished college in 3
semesters and graduated Aug. 15th. Now I started work part-time, but I
am having SPs after coming off the anti-depressant Effexor, and am kind
of laid up for a few days. The work feels good though.
Now, establishing a routine for myself does give me alot more
self-confidence. I have been bound and determined to follow a
structured or routine lifestyle in the past. I have wanted to beat the
odds, but I have to keep in mind that in the past, the seizures kept
coming back.
Just to sum it up, as Clint Eastwood put it once in some 1970's movie,
"A man has got to know his limits." And man I have learned that lesson
over and over and over.
Just keep it real, and I hope the best for you.
E.B.