Good neuro. visit! Quality of life vs. seizure control

[seizures4ever]

Hey everyone

Today I went to my neurologist. I've been keeping a monthly seizure record to show her. I've had 10 complex partials this month, 3 status simple-partials, and "ordinary" simple-partials multiple times daily.

I was afraid she was going to make another medication adjustment, but I explained to her how good I feel. My quality of life has improved so much since I've been on this lower dose of Trileptal and Keppra (with no Topamax). I've felt good enough to do the laundry, the dishes, sort paperwork...basically things I never have the energy to do!

Anyway, we discussed my treatment. She said that I can have up to 2 complex-partials a week, 1 status (simple or complex-partial) a week, and daily simple partials and she won't adjust my meds. Any more seizures than that and I will increase my Trileptal.

I LOVE my neurologist. She always listens to me and tries very hard to balance seizure control with a decent quality of life.

This is the first time in years that I feel like a human with all of my senses!

Thought I would share! -Julie

[Nancy]

Wonderful !! Not that you're having seizures .... but that you have a neurologist who LISTENS

[RobinN]

Let's try to get these numbers down.

[seizures4ever]

Thank you for the replies.

It seems I will always have seizures. I updated my "profile" now so that people can understand my situation a little better.

For 15 years, I could not find a doctor who cared about my quality of life. It was always placed on the "back burner" for better seizure control. However, better seizure control never meant seizure free. It just meant it was acceptable seizure control from the doctors' prospective.

I've decided to speak up for what is acceptable to me...from my prospective.
Ideally, that would be no seizures and a wonderful quality of life. For right now though, I'm just thankful to feel like a functioning person with epilepsy.

And Robin, I would LOVE to get these numbers down!

-Julie

[hawke86]

It's good to hear you had a good visit with your doctor.

[Belinda5000]

JUlie,

First finding a decent neurologist is hard,I've had mine 18 years.
I know my neurologist has tried everything to get me controlled with no luck.

Having a neurologist who listens is unusual I know I called mine today after he ask me look something up for him when talked to him yesterday he said I didn't expect u call me back so soon.

I wouldn't change neurologist for anything either.
mine is a gem.

Belinda

[Bernard]

Sounds like a good start Julie. Many docs have tunnel vision on the no more seizures and ignore valid concerns about side effects on the quality of life. Hopefully your record keeping will yield some more clues about possible triggers that help you get better control. Are you tracking your diet and sleep schedule as well?

[brain]

That's awesome news to hear Julie!
Your Doctor's a precious one! Glad
you've found one that actually listens
and is willing to work with you! And as
everyone else posts, and I'm sure it will
work in due time, in getting those seizures
down while still maintaining your quality of
life and everything after that will become
a complete breeze for you!

Way to go!

[seizures4ever]

Thanks for the support everyone.

I don't know how long this "feel good" stage will last, but I plan to enjoy it for as long as it's here!

Bernard,
I don't keep track of my diet or sleep. But I do keep track of any illness, migraines, stressful events, and menstruation.

Sharon,
I'm so glad you're doing better. Take care and thank you for the support.

-Julie

[skillefer]

WOW! Sounds like you have a great neurologist.

[PhylisFeinerJohnson]

Seizures4Ever, Who is your neurologist and where is she located?

[PhylisFeinerJohnson]

Belinda, who is your neurologist and where is he located?

[dumbspouse]

I'd like to know too. Just in case we make it back to the Peach State...