Jamie,
I learned that you are wired up all over your body and the wires are
connected to one place that is connected to their machinery.
If I remember right it -- whatever went into that computer went out
into their office-- which they watched all night.
I learned that if I wanted to go to the bath room - all I had to do was
wave my arm in the dark and they would come and disconnect me.
I carried the wires into the bath room and when I came out they
connected me up again. They watched me sleep all night.
The last time the operator had given EEGs and she could see spikes
in the report. Although they nor the doctor ever associated my apnea
with my szs.
The first time I used the CPAP machine a month or 2 and then told the
Dr. it would wake me wake and I didn't like it. I rented it that time. He
discontinued it.
The second time an agency (Lincare) kept track of me and called me
every month to see if needed supplies. I liked that nose piece better
but I couldn't sleep more than an hour or 2 and if I didn't use it -- I
could sleep 4 or 5 hours. That didn't make sense to me. My nose
always ran the next morning-- but didn't when I didn't use it.
This time there was a card in the CPAP that I took to the Dr. and he
could see how much a used it and I guess how many apnea I had.
He always told me if I lost some weight -- that would help.
Medicare was paying for it and I had it over a year -- but didn't use it like I
should have. I told the Dr. (same one) if I was paying for it I sure
wouldn't be using it. "Well I can DC (discontinue) it and wrote a paper
doing that. I asked him what would happen if I didn't use it. He said
"It will kill you." He gave that answer to another question but I don't
remember what it was. I was 79 on Sunday.
So I decided to ask my Dr. and his PA how would it kill me? "You will
probably die in your sleep." That is the way I want to die-- so why all
the bother of the CPAP? So I called the agency telling them that I
wasn't using it any more and they told me that it is mine. It is all paid
for. So I packed it up in the case in which it was brought -- and it is
in my closet.
I know some people who wouldn't sleep without it -- but for me it
was a bother. They told me I didn't use I it enough to get used to it.
And that is probably true.
Millie
----- Original Message -----
From: Jamie
To: epilepsy@yahoogroups.com
Sent: Monday, November 22, 2010 11:33 AM
Subject: [epilepsy] Re: Ambulatory EEG
Millie and Tim,
what kinds of things did you learn during your sleep study?
When we were sent to Standford for Megan's, Standford Drs. said there isn't a sleep disorder associated with seizures. AT first they though her activity could be some deep sleep walking until they saw the video and they were like NO way! Turned out she had severe sleep obstucitve apnea. But the profeesor/dr. only thinks the two things could be playing off each other. SHe still isn't use to her CPAP machine.
:) Jamie (Megan age 9 mom)
--- In epilepsy@yahoogroups.com, "Millie Myers" <mylmy@...> wrote:
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> ----- Original Message -----
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