Greetings all. I have been lurking here for a bit.
My 37-year-old wife of 14 years was diagnosed with temporal lobe partial
complex epilepsy (to be confirmed via a video monitoring/EEG study in
August). The epilepsy follows a serious illness a few years ago that caused
her lungs to fail depriving her brain of enough oxygen. In the span of a few
months she has gone from a driven, intelligent, Ph.D. college professor to a
barely functioning, depressed, incapacitated person. And I have become a
(and I am not complaining, I'll do what needs to be done) a wiper of drool,
stopper of falls, cleaner of vomit, helper of bathroom functions, etc. We
don't have kids so this caregiver role is not a simple fitŠ
There is no way I can capture what this is like for her (and me), but she
has seizures every day that can last from a few minutes to a few hours (not
grand mal seizures, partial complex seizures that present as confusion,
imbalance, hallucinations, uncontrolled movement, disorientation, etc.)
Following a seizure she will "sleep" for a little while or up to all day.
Sometimes she's so out of it after a seizure, she cannot be awakened no
matter what. The hardest thing is the duration ‹ I am not exaggerating when
I say they can last hours. She just "finished" one that started a bit after
2 and it's after 4:30 now. This one had the added bonus of throwing up in
the middle.
We've gone to the ER a few times, but they just stabilize her and send her
home, so no more trips to the ER unless something serious happens.
She can't be left alone at all, so if I can't take her to my office during
the day, we have to bring in a sitter. Not cheap. If I am in my home office,
I have to have video monitor on her. She could be fine one second and
falling on her face the next. She can just "phase out" in the middle of a
conversation. She can topple over while sitting on the couch. It's not like
you can just ask her to lie down as she'll forget two seconds later and try
to get up to do "something" that she doesn't even know she wants to do. So
it is constant. And if she is lying down, she needs to be on her side as she
does not protect her airway and could choke.
Apparently she has been having minor seizures for the past few years, but
was not diagnosed since we did not know they were seizures (like most
people, we thought "seizures" were the standard tonic clonic seizures). In
January she fell and broke her nose and front teeth. She was then in a car
accident a month or so later . That was when we finally got the neurologist
to provide a diagnosis. We have since been seen at the Emory University
Clinic.
The weirdest thing is that since she was diagnosed and started medication
she has gotten MUCH worse (in terms of frequency and severity). She has had
seizures that are clearly seizures that she never had before (or else we
could have gotten treatment much faster). If she ever has before what she
had today even dumb me would know it was a seizure and would have gotten it
checked. But the simple confusion and, what I called "fuzziness," that I saw
periodically was not enough to lead us to epilepsy -- the neurologist didn't
get there either.
She is now on 300 mg of Triliptal twice daily (was on 450, but is moving
down at the recommendation of the epileptologist at Emory) and 1,500 mg of
Keppra twice daily on her way up to 2,000 twice daily.
She had a good week two weeks ago, but we have adjusted the Triliptal and
has had a bad 8 days or so. The nurse at the clinic said that the medication
adjustment can cause more seizures. Has anyone seen this?
Ah, it feels good to write this. There's no way I can capture everything in
a way that someone can understand how truly difficult it has been on us. I
haven't see many posts from family members in this group, but I thought I
would chime inŠ
Thanks!
Ken
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