----- Original Message -----
From: Danita <nutsrus@...>
To: Cathy Page <cathy.page@...>
Sent: Friday, October 29, 2004 9:25 AM
Subject: Re: [N] sleep doctor communication


> Cathy, Your symptoms sounds sooooooooooo much like mine. The EDs, C, AB
and
> talking jibberish etc. I went through the docs telling me stupid stuff,
like
> the neurolgist sleep specialist telling me it was depression
> arrrrrrrgggggggggh. I finally found a pulminary doc who also specializes
in
> sleep disorders, who has been helpful. My AB, C and Eds has improved a
lot.
> I still sleepwalk a lot, I call it 'asleep on my feet' but I am able to
> function even when 'asleep on my feet' much better. I set a timer for
every
> 5 minutes while cooking and am cooking again. I use the timer for
everything
> and soemtimes it goes off and I can't remember why :3) I am gaining
> weight cuz I don't eat all day from the ritalin then eat continually in
the
> evening cuz I am hungry and in a fog after my ritalin wears off. Maybe I
> will add 20 mgs regular ritalin around 4 to help. I tried walking etc. but
> it seems like any stress or activity brings on C and I fall down, ( my
hubby
> came home from work and found me laying alongside the road so I got
grounded
> ( no pun intended) lol). Anyway I have been laying low (lol) and doing ok
> except for the weight gain :3( Maybe I will try exercizing again since
my
> meds have been increased. Anyway I feel for you. I am doing much better
due
> to my meds, this is what I take: ambien 10 mgs. to sleep at night has been
> VERY helpful; prozac 40 mgs has reduced the frequency and intensity of my
C
> attacks, ritalin 40mgs LA - 2 times a day has helped my EDS. I also use a
> CPAP machine nightly for sleep apnea. I never thought I would be such a
> druggie but you gotta do what you gotta do to function. Different
> medications work differently for each person with N it seems. I encourage
> you to be completely open with your doc, if he doesn't understand your
> symptoms, try educating him or her. Example, "I have hynogogic
> hallucinations." and if he looks at you funny ask him if he knows what HH
> is. If he doesn't get it or wants to lock you up, find another doc. It
took
> me several. Two neurologists told me I didn't have N even after sleep
> studies. My current doc told me when I am frozen during the day, like a
deer
> caught in headlights (is how I explained it to him) was sleep paralysis.
> Does anyone think he is right or is it something else. Sleep paralysis
> during the day doesn't sound right to me. My brother has benefited greatly
> from Xyrem but it took almost a year of him being on it. Hang in there -
it
> does get better and you will survive. Danita In Illinois
>
> ----- Original Message -----
> From: Cathy Page <cathy.page@...>
> To: Narcolepsy Net <narcolepsy@...>
> Sent: Thursday, October 28, 2004 7:39 PM
> Subject: [N] sleep doctor communication
>
>
> > +-- [N]arcolepsy Internet: This is not medical advice.
> >
> > Hello All,
> >
> > I have come back to the list after being offline for various reasons. I
> have
> > been lurking for a few weeks, trying to get the feel of things here and
> > getting to reaquaint myself with the dynamics of the list.
> >
> > I am going to see the sleep doctor tomorrow and was hoping to get a
little
> > coaching about how to best benefit from the visit. I have had a hard
time
> > being open with the doctor about some of the more troubling aspects of
> > Narcolepsy that affect me. The problem is twofold. Lets face it,
> describing
> > (or witnessing) episodes of Automatic Behavior, Hypgomic Hallucinations,
> etc
> > seems way out there. And, some of what happens to me is not exactly how
> > those features of Narcolepsy are described in the literature.
> > Can anyone tell me if the "sleep walking" I experience is an aspect of
> > Automatic Behavior? And when I am jerked awake and fall down, is this
> > Cataplexy?
> >
> > This second reason for failing to be totally forthcoming is something I
> > should be able to overcome, as the symptoms of the other illnesses that
I
> > have are not classic textbook presentations, either. But, Narcolepsy is
so
> > totally in the brain, and for many years before I had accurate diagnosis
> of
> > the physiological destruction of my body, I was labeled a head case and
> > medicated accordingly, that I am exceptionally protective of being
labeled
> a
> > nut case. I see many different specialists and some of these highly
> educated
> > doctors are ignorant of the nature of Narcolepsy and label some of the
> > symptoms as mental.
> > I saw the sleep doctor back in September and he started me back on
Cylert
> > 37.5 in AM and at N.
> > The severity of my N symptoms are now quite severe as compared to 2
years
> > ago.At night, I awaken about every hour and often have a hard time
> > seperating the REM state with the reality of awake. I have developed
the
> > habit of sleep walking where I engage in some normal, everyday activity
> and
> > if I am awakened suddenly, I experience Cataplexy and fall down. Some of
> the
> > Automatic Behavior(?) activities are potentially dangerous(cooking,
> smoking)
> > and when I fall, I hurt myself. I have a 2 inch gash on my forehead
where
> I
> > was sitting at the computer and the fell, hitting my head on the coffee
> > table. Some days the EDS is SO strong that I am unable to function, even
> > with the Cylert. I have an increased number of Sleep Attacks and now
have
> > less warning of this happening. I have freaked out family by sinking
into
> > some altered state where I am still trying to participate but what comes
> out
> > my mouth is either way off subject or comes out as jibberish. This
happens
> > with varying levels of validity. My thought process is affected several
> > ways; slowed reasoning, lost words, loss of train of thought, extreme
> > forgetfulness, amnesia of recent events I have been part of. I often
find
> > myself at a loss as to where the last several hours were spent. I find
> > myself frozen at the computer, where I have sat for an hour or two. I
try
> > not to let all this bum me out but am really worried about how much of
me
> > the Narcolepsy will steal. Will I become unable to be the single mom of
> > three young girls?
> > I don't want the Narcolepsy to have so much control of my life, but I
have
> > to face my reality, which is that I am defined by how Narcolepsy
intrudes
> > itself upon me and those who are a part of me.
> > Well, this is over long, and I am sorry I can't offer some great
> > accomplishment tonight, but maybe someday...
> >
> > I read where Xyrem was being used for other aspects of N besides
> Cataplexy.
> > That it was also being prescribed for Fybromyalgia. Reading of how it
> > affects the body made me wonder if it would enable me to sleep longer
than
> > an hour at the time? If it would have the capability to keep me from
sleep
> > walking? And if I did get more sleep would less of it be REM? and would
> the
> > EDS be lessened? I feel I am vastly undermedicated but find I have a
hard
> > time expressing the need for more medications to my doctor. I would also
> > like to examine the possibility of using a medication that would jump
> start
> > me in the mornings. Is there anyone with positive experience with such a
> > medicine?
> > Any thoughts are appreciated.
> >
> > Cathy
> >
> >
> >
> > +-- Message author: "Cathy Page" <cathy.page@...>
> > +-- Please address private replies and chats to the message author
> > +-- Public replies and shared information address to
> narcolepsy@...
> > +-- All admin questions and issues: owner-narcolepsy@...
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> > +-- [N] website: http://www.narcolepsy.org (AUP, FAQs, Links, Info)
> >
>