Tim -
We are in Atlanta. We have recently seen an expert at Emory University and
are awaiting our appointment for the inpatient video monitoring (in August).
I live for the day of 1 every 3 to 6 months.
Ken
From: TIMOTHY BALDWIN <tbb1@prodigy.net>
Reply-To: Epilepsy Group <epilepsy@yahoogroups.com>
Date: Tue, 28 Jun 2011 13:40:44 -0700 (PDT)
To: Epilepsy Group <epilepsy@yahoogroups.com>
Subject: Re: [epilepsy] Re: Complex Partials/First Post
Ken,
Which state do you live in? My seizure frequency got alot better when I
began to
see a neurologist in at NYU (New York Univ.),and not continuing to see one
in
MD.My frequency of Complex-Partials went from 1 per 3-4 weeks to 1 per 3-6
months.He had me first do a 5 day Video EEG.Then a medication change,before
a
72hr. ambulatory EEG.My doctor (Orrin Devinsky M.D.) had been to
Harvard,Yale,N.I.H. before speaking to President Obama at the U.S. White
House. Tim Baldwin
________________________________
From: Ken Wallace <ken@faithandken.com <mailto:ken%40faithandken.com> >
To: Epilepsy Group <epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com> >
Sent: Tue, June 28, 2011 10:29:37 AM
Subject: Re: [epilepsy] Re: Complex Partials/First Post
Jamie -
Thank you. I agree August seems like a long time, but apparently the seizure
center has limited beds and many people to evaluate. She did an 24-hour
ambulatory EEG and MRI last year, but this was before she started having
obvious seizures. All the neuro saw was "seizure activity," but the
diagnosis went no further since the minor issues and we didn't even know the
fuzziness and confusion were seizures. We thought they were side effects
from some medications she takes for insomnia. He didn't prescribe any
antiseizure meds.
I asked if we can do some tests before the inpatient video monitoring study
(another ambulatory EEG for a few days) and was essentially told no).
We have some support. Her mom stays with her sometimes, but does not like to
be alone, so if I want to go out, I have to bring in a nurse assistant to
sit with her.
And no, we get no such luck getting quick appointmentsŠ
As far as adjusting meds, we're doing that now, but you have to go up so
slowly and she has issues whenever we change the meds (more seizures).
Ken
From: Jamie <cnmjmaloney@yahoo.com <mailto:cnmjmaloney%40yahoo.com> >
Reply-To: Epilepsy Group <epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com> >
Date: Tue, 28 Jun 2011 13:38:14 -0000
To: Epilepsy Group <epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com> >
Subject: [epilepsy] Re: Complex Partials/First Post
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 <mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.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 fit?
>
> 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 in?
>
> Thanks!
>
> Ken
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
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