Ken,
I admire you a lot! Hang in there, I was so depressed when my daughters seizures would keep coming all night. I hated feeling there was nothing I could do. It is a horrible feeling I am sure you are experiencing as well. I am surprised that your doctor isn't adjusting her meds if she is getting worse. On the nights I couldn't get my daughter to stop I called my neuro and he wold get us in that day. You might want to check into a new one that is more supportive and responsive. We had a ambulatory EEG done on my daughter the first week we saw him and my husband set up a tripod with the video at home, that helped us A LOT! Documenting it makes it very helpful for the doctors. Then you don't have to try to explain so much. At least that was my experience. August seems like a long time to me, you need help now and I am glad you worte to us. This site helped me understand and gave me support when I really needed it. I hope you have some family support as well. Take Care and keep us informed.
Sincerly,
Jamie (mom of Megan age 10)
--- In epilepsy@yahoogroups.com, Ken Wallace <ken@...> wrote:
>
> 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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> [Non-text portions of this message have been removed]
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