I'm just recently dignosed with narcolepsy and at first I thought I was going to be okay but I need to talk to someone
smaj...@aim.com
track at my high school and during a race I passed out cold only later
to find that it was acutally a sleep attack with paralasys? [I can't
spell]. It's scary. At first I think I was so fustrated with trying to
find out what is wrong, a normal, in extreamly good shape, healthy 17
year old doesn't pass out randomly. I'm always tired. I've been tired
every day of my life. I can sleep 20 hours straight and still be
tired. I got a CT scan, MRIs, X-Rays, I was hospitalized after that
whole episode that was also extreamly embarassing, EEG, I almost had
to get a bone density scan. Finally my Dr. ordered a sleep study. That
was horrible. So many wires. All my life I thought that sometimes at
night I couldn't fall asleep or stay asleep. Even with all the wires
and sticky things I slept a soild 8 hours without moving. The next day
I did the nap thing, with 4 naps for 20 min. 2 hours apart. I slept
every one and fell asleep in about 2.3 min. for the average. I hate
pitty and I hate talking about things with people because I feel that
they don't wanna hear it or understand it ["why are you bitching about
it?"]. I missed so much school all my life and still am, I had so many
lates my jr. year I was on disiplinary probation and I almost wasn't
allowed to run at states. I'm now on provigil and the first few days I
took it I go so sick and I upped my dosage [with my drs. permission]
to taking 3 a day [600 mg]. I don't know what to do....
Tim J.
Sorry to hear about your problem, but I'd glad you finally got a
diagnosis. I too have narcolepsy and was on Progivil, but had to go
off of it because it made me so sick. I hope to get on Xyrem at some
point (when I can afford it). I had never heard of *increasing* the
Provigil in response to making me sick. Is 600mg. keeping you awake
enough? I quit at 400mg. and it didn't seem to do much for my
sleepiness, and kept me so nauseous that I could only stay in bed.
Then, I'd still fall asleep anyways.
flaghorn
desoxyn and xyrem for my symptoms. Have tried everything else up and down
the line of availed pharmacy options. The xyrem (GHB) helps restore rem
sleep that is lost because of narcolepsy. the desoxyn is meth but of a
pharmacy grade. I have found this to be a very good pair to control the
symptoms of narcolepsy for me. But everyone is different. Insurance helps
as the xyrem is about $700.00 usd and the desoxyn is about $535.00 usd a
month.
"Tim J." <tj6...@usa.not> wrote in message
news:5fojc31tohf312e0p...@4ax.com...
Cabbi
<smaj...@aim.com> wrote in message
news:1187631892....@w3g2000hsg.googlegroups.com...
I'm very sorry to hear that a young healthy girl is having so much of what
might be considered "old folks" symptoms, but they aren't symptoms for any
age group. Please don't feel self conscious in this news group. It is why
the news group exists, to explore and examine the difficulties and solutions
available for exactly what you have. Why you have it is no fault of yours
and nothing to be ashamed or shy about. The only thing that's important is
that you get some answers. That may take some time. It usually does, but
here is a great place to compare notes with others who experience much of
what you do.
First of all, get off the Provigil. If it makes you sick, it's no
replacement for sleep. The last time I checked, it was far more pleasant to
drift off than to spend the morning wide awake, kneeling over the john.
There are many other drugs and procedures to try, so don't even think of
settling for nausea. You can't take that crap. (I can and it works, but I
wouldn't touch it again if I barfed it up even once, knowing the Provigil
was the cause.)
Do you have or have you ever been treated for ADHD, attention deficit? The
same drugs used for that are used for narcolepsy. I was just curious. No
connection, unless you find one on your own. Is narcolepsy in the family?
I'm only asking because it helps to find precursors to define what's wrong
AND it helps to have someone close to you who can help you understand what's
happening to you.
Let me know, I'm curious. Don't lose faith. You're new to this and there are
many roads leading to a healthy life. You'll find yours.
Best of luck,
Cabbi
troy
> Dear smaj (sorry, but you didn't give me much to work with for a name),
> I'm very sorry to hear that a young healthy girl is having so much of what
> might be considered "old folks" symptoms, but they aren't symptoms for any
> age group. Please don't feel self conscious in this news group. It is why
> the news group exists, to explore and examine the difficulties and
> solutions available for exactly what you have. Why you have it is no fault
> of yours and nothing to be ashamed or shy about. The only thing that's
> important is that you get some answers. That may take some time. It
> usually does, but here is a great place to compare notes with others who
> experience much of what you do.
Agreed. It took me a long time to figure out that I had narcolepsy, in part
because it is not a common illness, so most doctors have no idea how to
treat it. I was 30 before I found out and it was a big relief to me after I
did find out - a huge weight off my sholders.
> First of all, get off the Provigil. If it makes you sick, it's no
> replacement for sleep. The last time I checked, it was far more pleasant
> to drift off than to spend the morning wide awake, kneeling over the john.
> There are many other drugs and procedures to try, so don't even think of
> settling for nausea. You can't take that crap. (I can and it works, but I
> wouldn't touch it again if I barfed it up even once, knowing the Provigil
> was the cause.)
Agreed. I didn't like Provigil either, but everyone is different. The
brain is very complex, and everyone's brain is as different as everyone's
personality. So it can take awhile to treat narcolepsy with the right mix
of drugs.
Troy
Cabbi
"troy" <tdke...@comcast.net> wrote in message
news:_IadnXLNG7W54bfa...@comcast.com...
but what choices have you been offered since you've been diagnosed?
Cabbi
troy
I have been taking Lunesta and it has been helping a lot. Normally, I don't
sleep very well at all. I wake up all the time, or I can't get to sleep,
and then by the morning I am dreaming like crazy and I don't want to get up.
But with the Lunesta - at least I go to sleep and stay asleep. I am still
tired during the day, but not as bad as I was without the Lunesta. I feel
much better after taking it. Not cured, but at least my daytime sleepyness
is not so bad.
The only side effect is that I have a bad taste in my mouth when I am
asleep. It dosen't really bother me though, I just ignore it. Actually, I
think I have learned to associate the bad taste with going to sleep, so I
actually started to like the taste ;-)
I take Prozac for my cataplexy. It works OK. The tricyclic antidepressants
worked better for me, but I like taking the Prozac everyday and just
forgetting about it. When I was taking the tricyclics they only lasted for
about 4 hours. So you have to take them throughout the day and they had the
side effect of making me sleepy - which you don't need if you have
narcolepsy;-)
My cataplexy is not very bad. It basically only happens when I play sports
or when I was on stage playing gutiar - but I don't do either anymore. The
good thing is that it is nice to know that during some stressful emotional
event that I can respond pretty well. I was in two car wrecks and I almost
drowned in a rip tide, but my cataplexy didn't bother me during any of those
events because I was taking the Prozac.
The problem with cataplexy is that you never know when you are going to need
your wits about you!
Troy
"Cabbi" <ca...@aol.com> wrote in message
news:13iqfg4...@corp.supernews.com...
Chris Barrett
It is unreasonable for the school to discipline you if you are unable to
attend because you are having difficulty remaining concoius.
600 mg strikes me as a lot. Since you got sick, it sounds like you may
have had too much.
Twenty hours is a long time to sleep, and, to my knowledge, it is not a
typical symptom of narcolepsy. It is also not typical for narcoleptics
to be tired all the time. Did you go into REM sleep soon after falling
asleep? If you did, then you might have something in addition to
narcolepsy. If you did not, then you might have non-narcoleptic
hypersomnia.
Roy Harmon
Are you sure? I was told one of the major symptoms of narcolepsy was
being tired all the time.
slowhandfan
> Chris Barrett wrote:
>
> - Show quoted text -
I'm with you, Roy. I was diagnosed 2 years ago (March 06) and, prior
to my diagnosis and subsequent medication, I was sleeping up to 20
hours per day. That is exactly what Narcolepsy is all about. It's no
coincidence that treatment for N is with either Provigil or
stimulants such as Dexedrine, Desoyxn (sp?,) Ritalin and Adderral.
Today, even with my tx on Dexedrine (50 mg. daily) I sleep at least 12
hours per night. I take my meds about 6-7 am and by 5pm, I'm shot.
It's not unusual for me to doze off watching the news at 5pm while
sitting on my couch and eating my dinner at my coffee table. I'll
find myself nodding and my head in or close to my plate or knocking
over my drink with my head as it bobs down. I struggle mightily to
stay awake to watch programs on tv that begin at 8pm, for goodness'
sakes!
As fro Smaj, I agree with everyone else...if the Provigil is making
you sick, plus it's not working, go off of it. Are you seeing a Board
Certified Neurologist that specializes in sleep disorders? My doctor
was the director of the sleep clinic that I was tested at and quite
good. It's important that you have a doctor that specializes in sleep
disorders, because they will know how to work with you in terms of
finding the right meds at the right dosage. It takes time and work.
I know it has for me. And, Smaj, I'm so sorry that you are so young
and have to suffer from this horrible disease. You should also
probably be taking something to help you sleep at night (I know that
sounds crazy since you are already sleeping 20 hours per day.)
However, once you get stabilized on Ritalin or some other stimulant
and get some semblence of normalcy in your days, you need to get to
REM sleep, which narcoleptics do not (which is part of the reason why
we sleep so much.) Personally, I take Klonopin, 10mg at bedtime and I
sleep thru the night and get my REM sleep, or as close to it as one
can get.
Chris Barrett
I had thought that narcoplepsy was characterized by rather abrupt
irresistible sleep attacks, and that between sleep attacks patients
experienced a relative degree of alertness. Now that you ask, no. I'm
not sure.
Roy Harmon
As I understand it, you're right about the sleep attacks, but the lack
of REM sleep can often lead to a relatively constant sleepiness. That's
what I get, anyway, or I did before I started Provigil.