WP Weblog

Has anybody ever taken Adrafinil? How did it work?
It is not available in the US. The only way to get it is to import
it. Has anybody done this? What online pharmacies are reputable?
- Mike

Hi everybody,

My dad walked by the computer and asked about who was sending me all my emails. I told him about this group. He was surpised and said "You can all stay awake long enough to write an email?" I told him that all of our messages end up looking like this

eg. So i was going to tdsjfghc,sgfhhgggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggggg

N homour.

Anyways, what I relly want to know is, do people with N sleep walk? Over the past few months I have awoke to find unexplainable bruises, cuts and scratches on my body. My only conclusion is that I am sleep walking. I used to do it when I was smaller. I never used to hurt myself though, the worst that would happen is that I would lose things.

Also, how many of you take Alertec aka Modafinil. I take it but I find that my body adjusts to it quickly.

One more question. Both of my grandfathers died of a heart attack, my dad and sister have an enlarged heart, my brother (16) has had a pacemaker since he was born and now has an enlarged heart working at 10%, he has conjested heart failure and for the past few months has had quite a few blood clots on the brain. I myself have a heart murmer. Does anyone else have a heart problem or a family history of heart problems?
Thanks

[INLINE] DAMIAN FORD [INLINE]

No, i haven't noticed numbness due to provigil. I take dexedrine and i have numbness in my toes but it is due to 5 back operations. What side effects does provigil? I wonder if it works better than dexedrine. I am sort of used to the dose of 20mg. in the morning. Now I feel more sleepy wilth this dose cause i have been on it a long time. I probably need more. That brings up the subject of being addictive. Does that happen to you with provigil?
Suzanne

I take a whole provigil in the morning and a half later (I used to take 1.5 in the morning).
I have been experiencing some numbness in my hands and feet. Has anyone else noticed this?

Michelle

Hi guys, thank you for your replies to my posts!
I have some new places to find out more about N and understand bed rocking was a
common denominator among some.....whew, I was lost there for awhile...LOL
Ok here are more questions,
I am going for a sleep study and it is my first, my doc said he wants to find
the extent of N. But, some nights are good and some are bad. If it's a good
night will they still see the extent of "how bad" it is?
Is snoring a part of N? Seems like I see it with other disorders in symptom
lists like apnea, do alot of people have more then one sleep disorder?
I am 25 lbs over weight, is it common to return to a normal weight with
treatment, I seem to hear alot of people wih weight issues have SD so I wondered
if it got helped once they knew :) ( possible wishfull thinking )
I am wanting to start college soon, is this something I should inform professors
of and how do I go about that?
( I could always let them think they bore me to death like in high school he he
he, lol )
Oh and about the tests, I had brain sugery June 25th and I wonder if this will
effect the results too...hmmmm.
Hope everyone is having a great day!!! :)
Hannah

Is this your opinion or is it documented?
Suzanne

Hi
Just wondering where you got this information?

Rebecca,
My hair started falling out last year when my thyroid was acting up. I heard from a friend that if you take vitamin b-12 and zinc it could imporve the hair loss. It has helped me but not 100%. I take dexedrine instead of Ritalin and no hair loss is happening. Maybe you could switch drugs. Dexedrine helps great with narcolepsy. I also use Rogain and Rogain thickening shampoo and that stuff if great. Your hair feels thick and has a nice texture too after washing.
Maybe you could try and let me know if my suggestions help you. I hope they do.
Suzanne

Hi. Just wondering if anyone else has experienced hair loss with
Rogaine? My hair has really gotten thin since I've started taking
Ritalin. My hair is naturally thick and curly. I'm only 27 and
female. I never thought in a million years this would happen to
me. I used to complain that my hair was too thick. Now I have to
use thin hair products and my scalp shows across the whole top of my
head. I could cry! I've had all the tests done for thyroid,
anemia, etc... and saw a derm.. He doesn't think the ritalin is
causing my hair loss. I have to wonder though, because my hair was
thick before taking it and now it's soo thin. Problem is, is that
Ritalin works so well for my Narc that I don't want to stop taking
it. Any suggestions.
Rebecca

Here is a good site:
http://www.sleepnet.com/

they are pretty positive I have N but are doing sleep studies "to see
the severity" of the disorder in me.
basic info or even in depth. I have done some searches but am looking
for "expert" preferances :)
although I have been snorng and also stopping breathing in my sleep.
(my hubby tells me)
actually, uuggghhhh I hate that!!!! It hasn't happened for a month or
so. But the nap attacks ( as I cal them :) always do.
those of you groaning....you did't know the term at some point too :)
even if you were what, 5! lol

The bed rocking thing got a bit out of hand, I think, as things can on-line. I believe I was the one to propogate the idea when I replied to a message from somebody (I can't think who it was) who mentioned being told as a child by her parents that she wouldn't be able to rock herself to sleep when she got married. When I read it, I thought "how interesting. My dad always told me the same thing about taking my stuffed tiger with me when I got married... and, incidentally, I too would rock myself to sleep. Could this, perhaps, be a significant symptom related to having narcolepsy"? That was the gist of what I said. I was just reminded of this silly thing I remembered about my dad from when I was young and I commented on it because I was touched. I have absolutely no idea if the rocking has anything to do with Narcolepsy. I thought it was funny... what we're told by our parents and what sticks with us. After that, some others wrote back saying "Oh, I rock in my sleep too. It
must be something else Narcoleptics experience, like, EDS, sleep paralysis, hypnagopic hallucinations and so on".

Personally, I think that bed rocking is something more likely related to childhood than to Narcolepsy but heh? Ya never know.

So that's just my opinion and I think that's where the bed rocking scenario began. If anyone disagrees with me I'm open to any other explanations but it seems to me that something was just lost in the translation.

And you are not ignorant for asking.

Try www.kharm.faithweb.com/narcolepsy.html or www.narcolepsy.org/

I usually just go to the Google search page for Narcolepsy and pick and choose from the index but I'm not in the least bit 'web savvy' so my way is probably the round about way.

Hope that helps.

Pat

I'm a bed rocker too (and I'm female). My brother was a head-
banger. His daughter is a bed-rocker. I have not been officially
diagnosed with Narcolepsy. I had a regular sleep study done and they
recommended the MSLT test because of my sleep patterns (quick to REM)
and my other symptoms like excessive sleepiness and really vivid
dreams that are like out of body experiences. The more I read about
Narcolepsy, the more I'm convinced have a mild case. I don't think I
have cataplexy though. If someone startles me, I sort of tremble and
might lose my balance for a few seconds, but I thought everyone did
that. Can/does cataplexy show up later?

Hi all, I have posted only once I believe, I found out in June that they are
pretty positive I have N but are doing sleep studies "to see the severity" of
the disorder in me.
So I am wondering if anyone has favourite sites that are good for basic info or
even in depth. I have done some searches but am looking for "expert" preferances
:)
I just returned from DC, I had brain surgery and am doing well although I have
been snorng and also stopping breathing in my sleep. (my hubby tells me)
I also have had another sleep paralysis episode, yesterday actually, uuggghhhh I
hate that!!!! It hasn't happened for a month or so. But the nap attacks ( as I
cal them :) always do.
Sorry for coming off so ignorant, but what is bed rocking? For those of you
groaning....you did't know the term at some point too :) even if you were what,
5! lol
Thanks in advance for any replies!
Hannah :)

I don't bed rock, but I have hypnagogic hallucinations as I start to fall asleep. Does anyone have this condition? I take dexedrine daily at 20 mg. and they seem to help. I don't know if I should stop here and accept what I have as far as it being controlled or should I see a doctor and get a sleep study for narcolepsy.
Suzanne

Hi Everyone. I'm one of the bed rockers I have been reading about on this site. I thought it was just me. I had no idea there were others like me or that so many people with Narcolepsy were bed rockers too. I'm just wondering...is bed rocking more prevalent among women or men or is it about the same?
I really enjoy the posts from all of you and have learned so much that I haven't found elsewhere about N. I was diagnosed a couple of years ago. It was such a relief to find out I wasn't alone with all of the weird symptoms of Narcolepsy. So many of you answered my questions and offered help. Thank you for this.
Well, guess I have gone on long enough. I haven't posted in quite awhile but was curious enough about the gender of bed rockers to ask. Take care!
Marilyn

It's being published at http://narcolepsydiary.blogspot.com/
Any comments?
Ta

I've been a "N" for 24 years. I'm now 51, broke, living in government housing on $502. 00 a month social security disability and life generally sucks. I haven't had a date in 24 years either. Such fun!! The only thing "N" did for me is nothing good. I went from a promising career in Emergency Medical Services back in the last '70's to instant Trailer Trash because I'm going nowhere real slow. Of course now that I live in one of the worst states you can be in, South Carolina, where everybody hates the handicappers, certainly doesn't help. If they could get away with using the disabled for shark bite they would do it in a new york minute. And if you suffering with depression, a word of advice, All them shirks are going to do for you is prescribe more drugs and more drugs. And if you're taking Prozak. I'd tell the Doc, no thanks, I'm not interested in Suicide today. KNOW YOUR DRUGS! DOSAGE, INDICATIONS, SIDE EFFECTS!!! Get the package insert from the pharmacist or read up on
the drug in the Physicians Desk Reference (PDR) The big thing that is just killing me is loneiness. No money, means no social life. the person that calls me his best friend, has a bad habit of using me to maintain HIS standard of living, but I'm stuck with him because I need what little he pays me to get by. He also tries to keep me in this grand state of affairs because he's afraid to loss the battle for CONTROL since his wife is really in charge (Leather Teddy Mama) and she Miss Susie Spend Alot.
Well, enough of my venting.
Just got a TICKET TO WORK, the somewhat new program from Social Security Admin. and I'll bet a certain few are going to get very rich on this Government Program!!! But maybe I can get a job to get up the money so I can get the hell out of this state, and get somewhere with my life.

If your female and you need a place to crash while visiting wonderful Myrtle Beach, I live 40 miles south in Georgetown. On America's Favorite Beaches! Hoopi!

I thought that too, dropping off to sleep at inconvenient times was narcolepsy (I always pictured old men snoring into their food). I thought that I couldn't possibly have narcolepsy. I also knew nothing else about narcolepsy so all the other symptoms I had were kind of overlooked. I never experienced apnea but I always seemed to sleep more than anyone else and I was hell to wake up in the morning. When I'd have a sleep attack I thought nothing of taking a nap wherever I happened to be. I would just find a place and sleep for a bit... when ya gotta sleep, ya gotta sleep.

I complained about the sleep paralysis and the night terrors especially as a teenager but everybody thought it was all a peculiarity of mine. I was never so scared in my life when I had out-of-body experiences (I don't even like to call them that). When I tried to explain what I was experiencing everyone just thought I was taking drugs. I came from an extremely dysfunctional family (long before it was popular and everyone was doing it) and my symptoms, I was told were just a reaction to my screwed up life and some counselling and therapy would clear it up. And afterwards I was still screwed up and by then I was hallucinating too. I was told I was depressed and that developed into Manic/Depression and then the medications I was taking were responsible for everything. This went on for years.

I don't dream at all that I am aware of... that is, I rarely have any memory of dreams except when I have EDS and nap attacks and those arren't really dreams because I'm awake (or so I think). I don't understand that at all.

I fall over frequently. My Doctor calls that cataplexy... I call it klutziness. But my knees buckle and then I just fall usually when I'm startled or surprised (most people know not to sneak up on me). I've had major cataplexy attacks where I've been injured badly too.

Like you, I've had an eating disorder as well. I'd eat on auto-pilot and couldn't figure out why there were dirty dishes in the sink when I was certain I'd put them away. I wouldn't have a little snack either. Huge amounts of food would just disappear and I was positive I hadn't touched it.

I'd go out for a drive on occasion and not remember anything except that I'd be parked in a different spot from where I'd left my car earlier. This I was told could be dangerous and my boyfriend was so worried that he'd hide my keys from me every night just in case. He'd be so worried about my late night excursions that he'd drive me wherever I had to be and pick me up so I wouldn't have to use my car and he'd even take my car and park it where I was not likely to find it or he'd block it in so that I couldn't get out. He even got into the habit of hiding food so that I wouldn't have surprise feasts. This is all before anyone thought that this could be something serious and possibly I could have a sleep disorder and have me tested.

I'm one of the bed rockers and I'm not sure if that is significant to narcolepsy but it's interesting that there are quite a few of us.

Gee, you and I have a lot in common... I'm mildly OCD as well and with the bi-polar I'm a real case. I don't think OCD is related to narcolepsy but it is definately common in depressives. I'm convinced of the genetic thing... my brother is seriously OCD and depressive. Apparently both of those disorders are affected by the same part of the brain. (unlike schizophrenia).

I think I talk too much cause all I meant to say before I got off track was... the brain puzzle thing... if you do have narcolepsy it would explain a lot of the things you mentioned as some of the symptoms are unique to narcolepsy when they are experienced separately. If you have them all at once it usually indicates something else. Have you been tested in a sleep lab or was it only suggested to you? Because it really can't be diagnosed well without plugging wires into your head for a period of time. (I think... if anyone knows better about diagnosis please correct me). You'll probably find out that you aren't crazy even though you might have thought so before hearing about narcolepsy. I was reassured that I was not nuts after learning that I have narcolepsy. A lot of the weird things that I experienced were explained and even though I didn't want another illness added to my list it was a relief to learn that it was neurological and that it could be fixed (or at least
controlled). The most important thing I found was that I really wasn't insane and there are other people who know what I'm talking about when I try to explain things. I never had words to explain what I was feeling or what was happening to me because I don't think there really are words for what it's like and when I started investigating on-line I found people who know what I'm talking about and know exactly how I feel.

Thank you for reading all of this.

I had always thought narcolepsy meant dropping off to sleep w/o
warning. I had a sleep test because they thought I had sleep apnea
because I have excessive daytime sleepiness, snore, and have a very
small airway (but I'm not male or overweight). I scored just under
the wire for not having apnea, but the neurologist said results
on the test indicate possible narcolepy, like going into REM fast and
frequent awakenings.
He recommended a MSTL. They said if I fall asleep w/in 5 minutes
it's narc, but I don't think I could fall asleep that fast in a sleep
lab. At home, no problem. When I nap, I typpically have vivid
dreams.
I read about the other symptoms and am not sure if they fit me.
Sometimes I do have very vivid dreams that feel like out-of-body
experiences. Regarding catoplexy (sp?), my knees will buckle if
someone startles me, but nothing more than that. And there are
plenty of times I've done things on auto-pilot and can't remember
doing them. Several years ago I did have a hard time falling asleep
at inappropriate times like in Staff meetings, but I thought that was
from not eating (I had an eating disorder and have recovered). The
excessive daytime sleepiness remains but it is better because I make
sure to move around frequently.
It intrigued me that many said you were bed-rockers - I do that too!
Is that related to narcolepsy? I'v had OCD and low-level
depression since childhood...is narcolepsy yet one more puzzle piece
to my brain? Could those be the cause or result of narcolepsy?
Thanks for listening!

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In a message dated 6/18/02 12:52:01 PM Eastern Daylight Time,
angelais23@... writes:
I'd guess that it would be effects on you, like brain chemistry changes, not
something that'd hurt the baby because of active drugs, Ritalin's half-life
is extremely short, as anyone that's taken it knows, so there *shouldn't* be
anything odd in your bloodstream.

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My name is Angela. I am 26 years old and am taking 60mg of Ritalin
a day. I am hoping to concieve a child in the about 2 years. I
have heard that taking Ritalin now might cause birth defects in
children I may concieve later. Does anyone know if this is true? I
have had a doctor tell me once I am off the medication for a week I
will be fine. But a friend who works at a pharmacuetical company
says it can affect me even up to two years later. Unfornatetly my
experience with doctors and specialists so far is that they are very
uneducated as far as Narcolepsy and the medications they are
prescribing. If anyone knows any information I would really
appreciate hearing from you.
Thanks,
Angela

no replys about cylert combined with provigil. What other drugs are you using for fatigue?

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What are all of these blank emails from ...... pgariepy@... ......... I keep getting them with different subjects and sent from other email addys

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I have extreme MS fatigue. Does anyone use provigil combined with
cylert? My doctor doesn't want to give it to me.

what are these all about?

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Thank you so much for your support and understanding. It makes it
alot easier to deal with knowing that I am not alone. Thanks again.

what you are speaking of. I understand your guilty feelings. It is
good you are seeking help and it sounds like you are doing what you
can. That is worth something in itself. Keep it up. I have found
that if I get out of the house I am able to be much more alert.
Staying at home I just get sleepy. Have you looked for any support
groups in your area? Keep writing, keep asking, keep looking-talk to
your child about what you are trying to do and tell him/her over and
over how much you love him/her and I will also say a prayer for you.
It is not easy to parent with narcolepsy but there is help out
there. Keep writing.
Experience the convenience of buying online with Shop@Netscape!
http://shopnow.netscape.com/
http://webmail.netscape.com/

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They work just the same, they are made of the same ingredients. It's like buying Advil vs Ibuproffin or Tylenol vs acetaminophen. Prozac is just a name brand, like Pepsi or Coke.

I just looked up the definition for Prozac and it said "A trademark used for the drug fluoxetine hydrochloride"
Hope that helps.
Good luck. :)

I do know both are highly genetic, though chiari in it's infancy has not been
definitively said so. But research suggests this, I am having surgery on the
25th, so I am nervous!
But ready for a chance of alleviation of these symptoms.
My blockage is specifically bad at the brain stem, which damages it. So I though
that since Narcolepsy starts there, with 2 and 2 together it makes sense!
It is nice to hear your daughter is doing well! I was only diagnosed in March so
no shunts or anything. I just found out Monday I am a narcoleptic, so this is
new to me :)
I fell asleep during first aid training today.....ahhhhhh.....this has been an
embarassment for me so many times! This time I warned the instructor ahead of
time and that helped.
My boss asked me if I was alright though.
Have you had a MRI done?
How long have you known about having N?
Oh and thanks for the reply :)
Hannah

Because of my insurance, I am being switched from
Prozac to the generic form Fluoxetine ( Par ). Has
anyone noticed a difference in the generic form, or do
they pretty much work the same? I'm starting it
today. Hopefully the generic will work just as well.
We'll see. Please share your experiences with the
generic vs. the real thing. Thanks.
Rebecca

Welcome to the group Hannah! My daughter also has
Arnold Chiari malformation. Do you have a shunt for
hydro? Are you having the decompression surgery? My
daughter has had this surgery and it has helped her
greatly. Wish I could answer your question about the
brain stem thing, but I'm not sure about this. I want
to ask my doctor now though, since my daughter has
chiari and I have Narc. Very interesting. Let me
know if you find anything out about this. I'll also
let you know what I find out. Good luck to you!
Rebecca

Hi all, I just found out I have Narcolepsy and I kinda already
suspected it.
My dad the philosopher told me I had out of body expieriences, and I
believed him for awhile........but after much research I realized they just
werent the same thing.
I have Chiari and I am having brain surgery this month, I actually
started having more sleep paralysis episodes lately and I called my
Nuerosurgeon and he sent me to a neutologist and ...etc etc etc...here
I am!
I am really uninformed on the science, but not the symptoms.......they
have been around for awhile. I am curious though....my brain stem is
affected by the Chiari and my cerebal spinal fluid is blocked there (
hence the reason for surgery)
I read that the problem with narcolepsy is in the brain stem, but I am
confused, I thought it was to do with Nrem and REM, and going into
REM too soon....
Well this is getting lengthy, any advice or even a good informative
web address will be appreciated!
Hannah :)

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It's that Klez virus so who knows where it came from. It infects through e-mail so you're not to blame personally.

I am a mom with narcolepsy as well. i have gone through some of what you are
speaking of. I understand your guilty feelings. It is good you are seeking
help and it sounds like you are doing what you can. That is worth something in
itself. Keep it up. I have found that if I get out of the house I am able to be
much more alert. Staying at home I just get sleepy. Have you looked for any
support groups in your area? Keep writing, keep asking, keep looking-talk to
your child about what you are trying to do and tell him/her over and over how
much you love him/her and I will also say a prayer for you. It is not easy to
parent with narcolepsy but there is help out there. Keep writing.
Stacy
"sleepymom1116" <sleepymom1116@...

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Hello all
Just thought I would comment on the rocking thing. I am 35 now and still have
to rock to get to sleep, either my legs my backside, lower trunk.
It is the only way (I never did the singing stuffed animal thing though).
I have a close friend who is a psychiatrist. He diagnosed my narcolepsy
when several other doctors misdiagnosed. I am still ever so grateful to him.
It is also very helpful to hear fello folks with narcolepsy relate stories about
trying to wake up. That is the worst part of my day by far. I have learned to
accept it and do the best I can, but it was always a sore spot for me until I
heard all the others with the same deal.
Thanks for sharing
Stacy

That's ok, I understand.
Suzanne

Sorry , I thought you put it on my web, it listed as from narcolepsy

Hello,
I'm a danish girl, i'm 21 years old, and I'm new to this group. I'm
dianosticed with cataplexy, and I have a bit of a problem. During
the attacks i wet myself. Is that normal for a girl at my age? My
doctor doesn't know much about it, and he can't tell if it is
normal, nor if it is to be cured in some way. I've previously
contacted som experts, and they said that it was not normal, but
have some of you girls have similar problems, and do you know if
there's anything to do about it?
Yours
Mette Andersen

what are you saying? who are you? what are you so mad about, something about narcolepsy? I have no idea what you are talking about!

I never sent anything like that to any one.
and what dose it have to do with narcolepsy
don't put that blame on me.

What's this?

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I bet your dad loved that. Too funny. To answer your
question... I've hallucinated tons of strange things,
I could probably write a book. I'll share a few
things with you.
When I was eight, I shared a room with my brother, and
one night I had a hallucination that he was being
attacked by demons. I tried to help him by pulling
the side rail off of my bed ( i slept on the top, we
had bunk beds ). I remember all these arms reaching
up ( hundreds of them ) and trying to grab me. And
flames rising.
At the age of 16 I thought I was seeing spirits,
etc... in my house when I was awake. They would walk
past me, run up the stairs, sit and watch me, etc...
I thought my house was haunted for years. I could
never figure out why no one else was seeing things
like I was though. I didn't know anything about
Narcolepsy back then and wasn't diagnosed until I was
in my twenties. My mom thought I was nuts, so I just
kind of shut up about things and kept them to my self.
I would have sleep paralysis with hallucinations
almost every night. I would try and stay awake as
long as I could, before falling asleep, because of the
fear. I felt like my street should be renamed Elm
Street, because I felt like I was trapped in one of
those movies.
I've thought that I was levitating off of my bed
numerous times. Or coming out of my body. Once I hit
the ceiling and I remember it hurting. Another time I
kept bouncing off of the ceiling and all around the
room. This experience was strange, yet funny.
I've had numerous attacks from aliens, demons,
monsters, spiders, etc... One time, as I was drifting
off to sleep, I heard my door open and this large
cat-like monster came crawling into my room and jumped
on me. I remember it scratching me all over and I
think I actually felt pain. It had really sharp
claws. Then it jumped up unto my curtains and
eventually was gone. I remember it ripping holes in
my curtains and I was so angry, because they were new,
but I couldn't do anything about it, because I was
paralyzed!
This one is strange... one night I fell asleep on the
couch. I started to wake up, because I felt someone
touching me. There were two off them actually,
because they were talking to each other. One was
doing something to my head and the other was doing
something to my lower body. As I was waking up, I
heard one say to the other that they should go,
because I was starting to wake up. Then they left and
I woke up and turned on all the lights, because I was
freaked out. I felt like they were doing some strange
experiment on me. Maybe they were aliens? This is
what I thought back then, before I knew anything about
sleep paralysis, Narc, etc...
Gosh, I could go on and on, but I don't want to take
up too much space. What kinds of things have you
hallucinated? Please share.
Rebecca
--- Damian Ford <argoswaterboy@...
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Your doctor should have just how life hindering your narcolepsy is at this point in his notes. You may want to seek the assistance of Legal Aid to have an atty assist you with your SSI or SSA claim.

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When I was smaller, all my dad had to do when he wanted me to sleep was, he gently put his index finger on one eye lid and his middle finger on my other eye. Then he shut them softly and I would fall into deep sleep. He tells me that he used to feel like a hypnotist. I thought that this was kind of funny.
What is the strangest thing that you people have hallucinated?
[INLINE] DAMIAN FORD [INLINE]

Hi there:
I'm a single mom with Narcolepsy. I'm having a horrible time staying
awake; not to mention caring for my child. Now that he's out of
school for the summer he's spending most of the day alone watching
TV. I feel absolutely incompetent. Today he told me he really didnt
want to spend the summer alone while I slept. :-( He does have
friends that he plays with but of course no one is going to keep him
on a regular basis. Friends offer temporary assistance - I cant ask
for more.
I am unemployed and going from medication to medication trying to
find something that works. I do not have health insurance and I'm
digging myself deeper and deeper into financial chaos. I cant even
afford to put my child into summer camp.
I am not eligible for welfare since I receive child support. I am
living on a bare bones budget - paying everything late - luckily my
apartment manager is very understand and I pay them as I can. I have
applied for SSI and SS Disability...we all know that may or may not
happen.
I feel so overwhelmed. I sleep most of the day and when awake I am
frantic about everything that I have not done and how I am failing my
kid. I cannot even wake up in the morning to make him breakfast - I
feel so very neglectful.
I can ramble on and on but I'm sure you get the picture. Please - if
someone else has experienced this and/or can offer any advice...i
would so very much appreciate it.
Thank you in advance...zzzzzz.

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I can definitely relate!!! In fact, I may copy parts of your email, if you don't mind, so that I can forward it to some of my friends and family whom also don't understand N. I have had trouble for years with waking up and was diagnosed N about 2 years ago... I have had to have people call me for several years and most of the time repeatedly to wake me up. The phone is the one thing that sometimes wakes me up... most of the time yelling my name does, and of course physically waking me up does, although, this is kind of hard since I usually live by myself (sometimes I have a renter in my house but usually not someone that is going to physically come in my room and wake me up). Luckily, my present roommate works with me and we ride together, so she is able to knock on my door etc. to get me up. But even then, many times I fall asleep in the process of getting out of bed. Also, my job ends this week... ( I work at an elementry school and school gets out Thurs.)...
so it will be back to the dreaded drawing board to find a job that keeps me awake and that I can get to on time....

I have a vibrate option on my cell phone and many times put my phone by my head when I sleep so that it will go off and buzz me awake. Many times this fails, as it doesn't stay on my pillow or falls onto the floor. I have tried various alarms also and either I shut them off in my sleep or they shut off after going off for whatever amount of time. I have several wake up calls and used to go through a site on the web that automatically calls me at whatever time I set it for. This used to be free and then shut down and became a pay service, but last I knew they were still updating the site. I have to set my clocks ahead and don't tell myself how far so I don't "really know" what time it is. I also set the alarms for different times each morning so I don't get used to it going off at the same time each morning.. (I dont know why I still do this cause they NEVER wake me up!)

I also found out, by accident, [INLINE] that if I had drank a lot of water, pop or whatever, before bed... and I mean ALOT I got up a bit easier, once I did wake up, because I had to go to the bathroom so bad... Now you may be saying... "how stupid"... but I have actually done this on purpose a few times to see if it would help and it generally has... course you can't have a weak bladder or you may wake up in a way you would rather have been late... [INLINE] This doesn't wake me up necessarily but it makes it harder to lie in bed any longer. I also have 2 cats and a dog and sometimes they will wake me up esp. if I forgot to feed the kittens they climb on my head meowing.. of course this doesnt start my day off on a good not but they sometimes have saved me from getting to work late once again.

I have taken ritalin before bed even an hour or so before it has no effect on me falling asleep and none on waking up either.. the Dr. thought maybe it would help me not sleep as "hard" and be able to wake easier... I took provigil (and loved it!!) and would still be taking it but due to a problem with my insurance have to pay for it and can't afford it... I took a half of pill for awhile in the afternoon since the pm is less busy and for me it is harder to stay awake in the afterrnoon and evenings. I now take siberian ginseng and tell myself it works.. and have tried no-doz and some of the other "high-energy" pills that you can by at the gas stations... I wouldn't take these on a daily basis or anything and one of them caused my heart to race and I felt "funny" but it did keep me awake when I had to drive late at night. I keep myself awake staying busy... if i stop for even a few minutes and don't keep myself consciously awake I would be asleep.

I have always said that if I went to sleep, the phone didn't ring and noone came into my room to wake me I would sleep til next tuesday... No matter what day it is when I go to sleep. [INLINE] When looking for a job there are som many jobs that i would like to do but can't due to the hours (early) and demands on being there on time... or to many lapses in busy work to keep me awake. I have worked with children in most of the jobs I have so that I can stay busy and of couse don't sit down for any period of time so that I stay awake. Does anyone have any ideas on a job that I can be looking for that "works" with those who have N? I would love to do more photography.. but that would mean no guarantee on income and no insurance or benefits...unless I pay for them on my own and without a guaranteed income I couldn't afford to live and pay for insurance or precriptions. sorry to keep rambling but it is sooo frustrating to talk to others who don't understand or know
what I am talking about. thanks for listening and looking forward to hearing back from any of you.... Pam

Hi. I am chrystal and I am 28 and I was diagnosed with narcolepsy in
December 2001. It is quite frustrating that I can't do the things
that I used to do without being just tired. I am glad to discuss this
with a group who understands. Understanding narcolepsy is new to me
so it is interesting to see that some of you are going through the
same things I go through. Now I know I am not lazy. I just thank God
I made it through grad school before I was diagnosed. I completed
grad school December 2000 but I can remember in October 2000 not
being able to stay awake sometimes. I work for state government and
my supervisor is quite understanding ( it kind of helps that her
supervisor is a friend). I am looking to relocating and of course
that means different employment. How did any of you address your
sleeping disorder with your employers? How do you hide it or not hide
it with your automobile insurance company? Sorry for so many
questions but it is just great to talk with people who understand.
Oh I am on Provigil. Sometimes I think it works and sometimes I
don't. My latest thought of the day is to by a watch with an alarm.

I'm 29 and was diagnosed with Narcolepsy in January. As everyone
else can relate, I was always just thought of as lazy...I myself
believed I was. I was given Provigil and it seemed to have made
everything worse. Now my symptoms are more frequent - making my life
unmanagable. I went back to the doctor this past week and was put
Ritalin. It worked great the first two days and now its like eating
candy - it does nothing. I took one today and feel right asleep. My
partner even asked me if I was sure that I was mistakenly given a
sleeping med!
I feel that as each day goes by I lose more and more control of my
life. I just cannot seem to stay awake - worse...when I am awake I
am so miserably tired and worn down. I have absolutely no energy. I
go days without doing my daily chores - my friends even come over to
clean my house. I am so upset and am beginning to feel completely
worthless.
I lost my job in March due to "excessive tardiness". While the
Provigil had helped me stay awake - nothing except physical touch can
wake me up. I mean NOTHING wakes me up. I can set 5 alarm clocks
and have someone call me. I will wake up two hours after I was
supposed to - just to see that I have messages and my alarm clocks
are either still going off or have turned off on their own.
To make matters even worse, I am a single parent to a 9 yr old son.
My son knows about my N and is extremely helpful in waking me up in
the morning and being quite self-sufficient for his age.
Unfortunately, as each day goes by I feel more and more as if I'm not
properly providing for him. Sometimes I cant even get up to make him
something to eat right away. There is no worse feeling in the
world. I am also beginning to worry that my ex will eventually try
and take my son away - stating that I cannot take care of my son
properly. That would just be the most devastating occurence of my
life.
No one seems to understand me. Everyone has a solution - excersize,
eat better, change meds yet again. No one understands that its not
lack of motivation and not like i dont WANT to get up and do "normal"
things. I feel so alone. I am getting so depressed.
I just dont know what to do. My partner has gotten a lot better
about keeping my son while I sleep and trys to be understanding.
Occasionally, my partner gets quite frustrated and this just makes me
wish the ground would open up and swallow me. I guess unless you
actually suffer from this - no one can truly understand.
Can anyone else relate? Does anyone have any advise? I feel as if
life is passing me by - and I'm just sleeping. My son is growing up
while I snooze. I feel that its just getting worse and worse instead
of better. Is this common?
Any advise or support is greatly appreciated. Thanks.
G

NIGHTTIME SLEEP
If I get 6 + hours of sleep at night, I can jump up from bed 10 minutes
before my alarm, no problem. If I Get 4 to 5 hours of sleep at night, I
won't even hear an alarm, and sometimes I'll even get up and turn it off
without even remembering doing it.
Daytime sleep
If someone wakes me up after just a 1 minute nap, I am fully refreshed.
However if I do get to take a nap without an alarm or a person to wake me, I
will sleep for 2 hours exactly. It's very weird how if I fall asleep at 5 pm
I will wake up at 7 pm, 2 hours later.
Dreams
Most of my worst paralysis dreams take place when napping in a recliner or
on a couch or floor. In my bed, I sleep on my stomach, and rarely have a
paralysis dream. If I sleep on my back, I will undoubtedly have a problem
with a nightmare.

I have found that my sleep must first be disturbed for atlaest 30-45
minutes befor i can drag my numb body out of the bed. The alarms are
always in my waking time dreams. The buzzer is not as loud as the
radio. I always sleep through the buzzers which do not turn off on
their own. Once when my Dad had gone to work early and thought that I
was awake enough to get up, I over slept by 3 hours, the whole time
dreaming i was stuck in a building which was on fire with the fier
alarm going off. My solution, 2 alarm clocks set to this god awfull
radio station that specialises in boy bands and has mornig DJ's who
are almost as annoying as the music they play! There's nothing like
an hour and a half of hell to get you going... For thoes of you who
are partial to the boy bands, try maybe a country station, just any
thing that you do not like to hear.

This is somthing my wife to be is going to have to learn to deal with
to. I am 23, have narcolepsy, and will be getting married in 19 days.
(we dont live together yet..old fashioned i guess) I have to leave
the house by 6:45 am. My alarmS are set for 4:15 am and the clocks
are set 45 minuts fast (so they go off @ 5 AM) I hit the snooze bars
over and over again, until I become concious enough to see that I
have over slept again, when actualy, I am still on time, because at
6:15 AM, I forget every time that the clocks are fast. I make a point
not to look at them during the day. She has just finshed school and
has always been a stay up late/sleep late person. This will be our
big challenge. She knows how difficult it is to wake me up. some
times after a nap at her house, or especialy after sex, it can take
as long as 2 hours to wake me up, and she says i am not always so
plesant. I never have any idea about conversations we may have had
during that time, nor do i recall her trying to wake me up. I started
takind Adderall yesterday, 20mils 2X a day,time release. My Dr.
perscribed Provigil because i had failed on Rit, good ol' insurance
company would not cover provigil untill i tried somthing else first.
I can tell a big difference allready. my heart rate is normaly 58-65
BPM, to day, it is 85-95 BPM and very irregular. I am far more alert,
I can concentrate, and i do not have "sleepy vision", and I feel
nervouse. I go back to the sleep center in 4 weeks, maybe the racing
pulse will be enough reason to pay for provigil. my insurance
company, (JohnDeer Select) is excelent, this is the first problem
that i have had with them. Even if they will not pay for provigil,
under my policy, i never have to pay more than $1000 per year for
medical bills. I would pay for the medication for 5 months, and they
would get the other 7!

It came from the definition of Idiopathic.A disease Having no known cause. If they knew the cause, they would classify the disease, and wouldn't call it Idiopathic. So, if the Excessive sleepiness has no known cause it must be idiopathic.. Its a real diagnosis, however, the diagnosis is only given if the doctor can't find out what the cause is.

If he can't find out, or doesn't know how to find out, then by definition his diagnosis would be Idiopathic Excessive Sleepiness.

[Andy Webster]

Thanks for the basic stuff. I didn't have a clue as to what IHS was and didn't want to ask. Now I know.

I fortunately have a doctor now who insisted that my sleep disturbances were not related to my bipolar illness. It took years before anyone even considered this.

Recently I was discussing narcolepsy with my brother and explaining to him that this was the cause of all the wierd things I experienced and complained about when I was a teenager living at home. When I asked him if he remembered what I went through he said "Hey, I just thought you were on drugs".

I was hurt but I guess that's what narcolepsy can look like to somebody who doesn't experience the symptoms. And nobody knew about narcolepsy then. I'm so glad that my mother thought otherwise (the drugs, I mean) and realized that the problems I was having with sleep weren't normal and that I was really suffering. She was supportive always but now whenever she reads something about narcolepsy or if I tell her when I've had an episode she gets upset because it took so long to diagnose me. She's even accused some of the doctors I've seen over the years of over prescribing medications without knowing what was wrong with me and of using me as a guinea pig for testing drugs.

The OBE stuff you mentioned was really interesting.

I used to have that a lot. For me this is just terrifying and it's much more than a baseball hat or a blanket being moved or in a different place. Can you suggest a reason why this is so frightening for some and not others? I know it's not really an out of body experience and I don't think I even believe in OBE's but when I have an epsiode of that I'm shaky for days after. There's nothing worse. I feel the same about the paralysis. It's sheer terror for me even when I know exactly what's happening physiologically.

Patricia

I'm sure that for everyone, like it is for me, the length of time it can
take to diagnose an ailment like Narcolepsy is a source of grief.
But I just wanted to write something compassionate about our poor
parents and our poor doctors. I am sure they suffer from this
helplessness too. Sure, when you live with someone who is broken in some
way you are bound to project some of your frustration onto the person;
we've all had people give us the "if only you'd get up!" pep talk.
Happened to me this morning!
Growing up my doctor, West Virginia, took care of folks in a town under
1000 people and the farmers nearby. This was in the 50s. There's simply
no way he could have figured me out. (I have other conditions as well
which further complicate the picture -- and I, like I imagine many of
us, am a complex person psychologically).
When I think of my mother and my grandparents trying to deal with me I
feel such a tenderness. They were, in a word, awful. They treated me
really badly. They did not understand my need to drive myself to the
limit as often as I could. I have a reading disability which made
studies very, very difficult. I would study standing up, and often
walking with a book in my hands. And it would leave me wrecked. But I
did extremely well in my studies and got into a college that was
difficult to get into and quite demanding. And that nearly burned me
out. Since college I have worked, quite successfully, in theater and
advertising. Until I couldn't any more. A stroke took me out of full
operation a couple of years ago.
The simple truth is I was a complete enigma to them. And I would have
been without the medical problems. I have uncles who have never read a
book. I had good friends growing up who never learned to read. I have,
so far, had a rich life, been deeply moved by Mozart, laughed heartily
(and sometimes regrettably!) at the funnies, tasted raspberries, and
fallen in love. I have never gone hungry. And in spite of the popularity
of social therapy groups that help us challenge the failings of our
dysfunctional families, I grew up to be a person I care about, and I
remember today, for the most part, only the good that my parents gave to
me. Ultimately I was able to find help for myself, and that ability, I
am sure, was taught to me by my family.
Rabbi Kushner (?) says in his book "When Bad things Happen to Good
People" --
"If the circumstances of every life were made known to us, we would find
there is no one to envy."
Harry

The following contains a new word I think we should consider using instead
of Narcoleptics, it is Narcolepsians. i.e. 'Look at all those
Narcolepsians.' it sounds and looks better. and feels much more optimistic.
Chapter 1
Remember when your doctor tells you that you have IHS Idiopathic
Hyper-Somnia, It usually means one of three things. a. He/She doesn't want
to give you the battery of sleep tests which it takes to diagnose a sleep
disorder. or b. He/She doesn't know how to properly interpret data from a
sleep test, or c. The data he/she has doesn't provide the evidence as to why
you are suffering from sleepiness. Basically IHS is a term for unknown
cause of sleepiness.
1) idiopathic. The American Heritage® Dictionary of the English
Language: Fourth
Edition. 2000.
...Of, relating to, or designating a disease having no known cause.
idi·o·pathi·cal·ly -ADVERB...
Chapter 2
When we have our dreams, i.e. the terror dreams when we fall asleep, the
sleep area of our brain is assuming our bodies are asleep. Unfortunately in
Narcolepsy we suffer from SOREM (sleep-onset rapid eye movement) which means
we are not fully asleep when we enter REM sleep. In non-narcolepsians, the
brain paralyzes the voluntary muscles of the body during REM sleep, this
helps to prevent a person from acting out his/her dreams and causing injury
such as falling out of bed, punching a burglar(innocent bed partner) etc...
This is why we are so conscious as we are dreaming. Our brains are still
semi-awake, but the Early onset REM is causing our body to paralyze it's
muscles.
Chapter 3
I don't believe our eyes are open when we are having these dreams. At first
I thought I was looking around and actually seeing things around me, like
the TV, an empty McDonalds cup, or my cat. It seems very real, and I even
thought I was straining to look at things, because My eyes would be strained
after I woke up. However, I have asked my wife if my eyes are open, and she
said 'no'. Another piece of evidence, is that in the dream I am 'seeing'
things that aren't real. For example, I might have left a Baseball hat on
the floor last night. But, If I was dreaming today, That baseball hat would
still be on the floor in the dream. However, When I wake up from the dream,
The Hat is not there. (My wife picked it up this morning). We are 'seeing'
simply visual constructions of what our mind thinks the room looks like. My
mind didn't notice that my wife picked up the hat, so in my dream the hat is
still there.
It is a very convincing trick, however. We actually think we are looking
around while dreaming. We also think we see people in the room with us, or
the cat walking around. But when we wake up either there is no one in the
house, or the cat has been upstairs with the wife the whole time we were
sleeping.
Chapter 4.
The above dreams are the reason people believe they are having OBE's -Out of
Body Experiences. Our brains are simply constructing different views or
angles from their daily conscious experiences. Imagine napping on the couch
in your living room, and entering this dream state, your angle of view is
from above the door. The blanket is folded neatly on the coffee table where
it always is, You see yourself sleeping on the couch(with no blanket), the
cat is sleeping on the chair and the TV is on.
However, when you wake up, you find out that; your wife covered you up with
the blanket and turned off the TV just after you fell asleep, and The cat
has been outside for an hour. Your mind created your so-called out of body
experience from conscious experiences. The last thing you saw before you
fell asleep was the blanket on the table, the cat sleeping on the chair,
and the TV tuned into sportscenter.
The reason people think they are experiencing OBE's is that many times the
environment doesn't change from the time you fall asleep to the time you
wake up. So your consciousness- based constructed view is actually very
close to the actual view. Basically their brain fools them into thinking
they were seeing real-time views of themselves.
Chapter 5.
Steps to being diagnosed with Narcolepsy.
1. Tell your doctor about your symptoms. Many doctors don't know about
Narcolepsy, so offer him the option of referring you to a sleep specialist.
2. Go to sleep doctor, (if you cant find one, try looking under lung
specialists) APNEA is often treated as a sleep disorder related to the
breathing passage, So many of your lung specialists have been somewhat
trained in Narcolepsy. (NOTE: If you go to a lung specialist, make sure he
gives you the Multiple Sleep Latency Test or Nap test, because he/she may be
prone to diagnose you with APNEA.
3. You will be given a questionnaire to fill out, Answer questionnaire
honestly. If you truly have Narcolepsy your answers will show the doctor
that you need the sleep tests. It is difficult to fool this questionnaire.
Some of the answers you give will only be known by actual sufferers.
4. Doctor should order a MSLT (Multiple sleep latency test) which will
require you to take four or five 20 minute long naps. The wires will show at
what point you enter REM sleep, and also show your sleep latency. (Time from
wakefulness to sleep)
5. This should be followed by a sleep study, in which you will be tracked
for 6 hours. The reason it follows the MSLT is that the first 20 minutes can
be included as the fifth or sixth nap in the MSLT. If you are borderline
Narcoleptic, you may need this nap to meet the requirements. The sleep study
will also rule out Sleep APNEA and other syndromes which could cause your
constant sleepiness.
6. If you are diagnosed with Narcolepsy the doctor and you should work out
what medications and habits would best fit your style. For example I did not
want to take amphetamines, and he doesn't like the paperwork involved in
prescribing them. So I asked him about Provigil, which I read about online.
And he agreed that would be his first choice.
-Andy

Trudi,
Yes stress makes things much worse.
Debbie

Dear Trudi,
When you say sleep disturbances, what exactly do you mean? Upon waking
occasionally but mostly upon falling asleep I have dreamed and hallucinated the
most frightening things. My husband is able to tell when that is happening to
me. He talks me through it in a very soothing voice letting me know that
whatever I think is going on is not real. Amazingly after a few weeks these
disturbances essentially stopped. After having spent years waking up not knowing
what was a dream and what was real this change was miraculous in my life. I
believe what transpired is a form of biofeedback. I continue to be a prolific
dreamer but the bizarre hallucinations are gone. This is my experience. I am not
a professional in the sleep disorder arena. Simply a person diagnosed with
Narcolepsy/Cataplexy.
Debbie

Article on Provigil - not sure if this was mentioned.
For Sleep-Deprived, a Dream Drug?
Doctors Question Use of Narcolepsy Medicine to Support Lifestyle Choice
By Shankar Vedantam
Washington Post Staff Writer
Sunday, April 28, 2002; Page A03
http://www.washingtonpost.com/wp-dyn/articles/A60736-2002Apr27.html
Jerome

In a message dated 5/2/02 9:56:10 AM Eastern Daylight Time, jeromes@...
writes:
And before reading the article I thought they were considering narcolepsy a
"lifestyle choice", as in you could stay awake if you really wanted to...glad
that's not what they meant.

Hi

One good thing about the Provigil is, that it will work quite fast for you if it is going to work at all.
I believe that it is worth the try, but to warn you, it is very expensive.
It works in a different way as the stimulants do, because it is not a stim.

I also heard that GHB is now release for people in Canada, check into it.

Gooday

rin

I can relate to your problem. My husband noticed that he was getting more and more sleepy right about that age. He is 21 now, and we are still tweaking with the meds. He did however, try Ritilin. We have had excellent results with Adderall regular and XR. I also thought Provigil did some good. I hope that this can help you.

When my 16-year-old son hit puberty a few years ago, he went from
being a child who slept very little and NEVER napped to a child who
sleeps 11 to 12 hours a day (he has, however, always been an
extremely deep sleeper). At first I thought the sleepiness would go
away when he stopped growing, but I was wrong. He's stopped growing,
but the sleepiness is just getting worse. He takes a nap EVERY SINGLE
DAY, and cannot function without one. It takes him a long time to
fully awaken after sleep, too. He has also gone from being a scrawny
child to a kind of plump one. I can only attribute that to the fact
that with all the sleep he's getting, he doesn't have time to burn
very many calories (or do much studying!).
We had his thyroid function tested--it's totally normal.
Then, I considered that he might have ADD, since he has some of the
symptoms. Also, someone who is bored often feels sleepy. Well, the
doctor was willing to give Ritalin a trial.
Here's the kicker--ritalin seemed to make him even SLEEPIER. If he
has narcolepsy OR ADD it should have helped!!
I'm very disturbed by this. He sleeps two to three hours more than
most kids, and is often not very alert when he IS awake. I'd like
him to have a sleep study, but the doctor thinks he's within the
normal range. But none of his peers have anything close to his sleep
needs, which only seem to be getting greater.
Does anyone have any advice?? Thank y9u so much.

Angel, I have had my roommates, friends, parents, etc. (anyone that has had to try to wake me up), tell me that they have tried to wake me up... and I do not really remember talking to them or even that they have tried to awaken me...( ALthough, I have never been told that I am mean, or say anything to them, just keep dozing off until I am almost late and then get up in a panic to rush to get wherever I am going on time.)

Does the phone wake your husband at all? THe only thing that I have found to wake me up more often than anything else is the phone.. as of now my parents, (who live across town), or sometimes my roommate will call my cell or house and then usually call 15 minutes later to make sure I am up. The other thing that usually happens is that my alarm either goes off until it shuts itself off (to snooze) or I will hit the snooze in my sleep.. this may happen two or three times, but this also helps me "wake-up"... just like the phone calls... I try to get out of bed the first time I am "awakened".. but if I do happen to fall back to sleep, the second/third call or alarm is easier to get up.. that or I am already late so I panic and get up with just enough time to get to work on time. : )

As far as paying for meds. ... I had insurace and that took care of the cost.

I would love to take my meds. first thing in the AM but it is getting up that is the problem.. I do take my meds as soon as I get up.... but I do not hear an alarm, without someone physically waking me or most of the time the phone will wake me up so I used to use a wake-up call servicee.. but they recently became a pay service.

I am not sure what FMS is so I don't know if I have been tested for it... thanks for the response. Pam

It normally takes 90 minutes for a person to go into REM sleep. Some people go into REM sleep almost immediately and those who get into it this quickly have narcolepsy! And that alone pretty much defines narcolepsy.

This is why we experience paralysis and hallucinations and have difficulty waking and all those nasty other little tricks our brains play.

Just thought I'd tell ya.

I've always had to be physically dragged out of bed. (I had a boyfriend who used to splash water at me and he'd still have to drag me onto the floor). I have an alarm that sounds like a fog horn and will wake my entire apartment building before I ever hear it. My mother's been phoning me every morning for years trying to get me up. If I don't answer she just phones again until I hear it. (incidentally, I don't have a phone anywhere near my bed. Answering one requires that I leave it). I'm grateful that there is someone who cares enough to make sure I do get up.

So, I don't have much of an answer for that one.

For a long time I had no idea that my inability to wake up had anything to do with my narcolepsy but I was really excited when I learned that there was a reason for it. I mean it isn't for lack of sleep, since falling asleep at anytime is one of the things I do best.

PG

Well there is one thing that I appear to be different on than a lot
of the people who have posted recently - I don't sleep through my
alarm...sometimes it feels almost impossible to get out of bed but
normally I'm able to do it if I must. So is it possible to be a
narcoleptic and be a light sleeper too? Any little noise will wake
me up at night and then it takes me forever to fall back asleep
normally. I wake up normally 6 times a night to use the bathroom.
But despite being a light sleeper I still have lots of sleep
paralysis. Also I've noticed that even if I fall asleep for 10
minutes (say between hitting the alarm in the morning)I still manage
to have a vivid, involved dream. It seems like when I do fall asleep
I go into REM or dreaming sleep almost right away. Even during short
daytime naps I almost always have dreams. Is this just me?
I suffer from LOTS of neck pain and achiness. I was in a few car
accidents when I was younger so I've always assumed that this was the
legacy of the whiplash I probably got from those car accidents.
Well I know I won't know anything for sure until I have a sleep
test. Dh goes to get his test in a week (he might have sleep apnea)
so I asked him to ask the technicians about whether they ever make
special arrangements that could accomidate the baby also being with
me during the sleep test.
Paula

I take Provigil, 200mg/day. I had good health
insurance coverage for prescriptions, but that
just ended. I'm unemployed and my new policy
says it will pay 50%. I called Cephalon
Professional Services, the company that makes
Provigil. They have a patient assistance program
and said they would send me an application form
to fill out with my doctor. That was over a
week ago and it hasn't arrived yet. Supposedly,
depending on my health care coverage, and maybe
my employment situation, they could approve my
application and send me vouchers to pay for the
Provigil prescription. I'll let you know if
I get that far.
Jerome

I was wondering if anyone could tell me how your spouses wake you up.
I love my husband, but waking him up is a chore that sometimes
frusterates me to tears. I just can't seem to "wake" him up. I usually
get him as far as the end of the bed before he dozes off again. He
doesn't remember anything I do to wake him up, but unfortunately I
remember the way he treats me. It is not violent or anything, but lets
just say he doesn't know what he is saying.
I was also wondering if anyone could tell me exactly how they pay for
their medication. I am mostly concerned about provigil and adderall.
Provigil runs about 5.60 a pill and adderall is about 1.60. My husband
takes provigil 2x a day and adderall 4x a day. This tends to get a
little expensive.

Angel,
Yes. Many people have experienced this problem! You are not alone!
I vaguely remember libido...
If there is any chance you can schedule a session or two with a therapist
who has a specialty in sexual issues, then by all means do. You have made a
million adjustments for your husband. He can work on this too. Don't be
afraid of sex therapists. They don't do wierd things. Make sure if you
should pursue this that you see someone licensed and who has good
references. It would be good to go through any therapist or social worker
you know, or your neurologist.
Personlly? I schedule time with my partner. I spend a good deal of time
preparing. This involves a number of things that help me make the
transition. I doubt they are appropriate for discussion on the list -- and I
think a therapist should really be helpful in putting together this kind of
protocol (for want of a better term!).
Regarding spontaneous expression -- sometimes I decide that I'm going to
respond the next time it happens no matter what. This is often really
difficult for me and I have to just "act as if." Occasionally it turns into
something great. Sometimes it just feels like a chore. Sometimes it feels
almost icky. But I'm not alone in the bed and I am quite willing to work at
this.
Good luck. Don't give up. Just try to let the resentment you feel motivate
change.
Harry

"Also, so that people know, Narcolepsy is a genetic deffect where the
Hey Tom,
While it is true that some genetic strains of narcolepsy have been found,
the true cause of narcolepsy is by no means black and white. It appears that
there may be both a genetic factor and a viral factor involved -- I even
read a study that made a link between narcolepsy and trauma in early life
(you are more likely to develop the disease if you had a sever trauma in
early life, near death encounter, etc., than if not...)...
So yes, it does appear that they found a genetic link to provide a partial
explantion for Narcolepsy. It certainly appears to run in your family. But
how do you explain my family, where the only family member with narcolepsy
is related to me by marriage? Niether bipolar or depression run in my
family, or any other simalar diseases.
All I'm saying is that it's not the only answer.
Suzanne

My husband's "N" has never seemed to affect our sex life...but ever
since he started taking adderall, when it's time to sleep...it's time
to sleep. I can't talk to him about it, because he doesn't see the
pattern. Is anyone else having this problem...if I am being too
foreward...I'm sorry.
Angel

Suzanne,
Thanks for sharing your story. It's very interesting! So many
symptoms and events you mentioned happened to me in high school and
over the years.
Reading your story was what really hit home that I need to get tested
for narcolepsy. How are things going for you now? Has the provigil
helped in your opinion? Do you sleep better at night and have less
attacks of sleep paralysis?
Paula

I am new to the list, I have been experiencing N symptoms since i was
14. It took 3 yrs to be diagnosed, they thought it was depression
and a "bad attitude" and laziness.
I am now 24 and trying my best to attend college and earn decent
grades. I was a pre-med major, but I have changed to Pre-
dental/Biology. I am having trouble with motivation bacause of how i
feel all the time-tired and very achey(tight muscles in neck and
headaches). I am taking dexadrine with helps but after 2 hrs of
wakefullness i get really bad muscle pain in my neck which then
becomes a headache. This makes it very hard to cocentrate on my
difficult course work. My grades just keep getting lower, and I have
to retake classes. I would be done by now if this didn't happen. I
have tried provigil, but have had mediocure results at best. I am
looking for any advice from anyone about what I am going through!!!
I am so frustrated and desperate to become better and acomplish a lot
in my life. I DO NOT want to use "N" as a stupid excuse to why I
didn't accomplish my dreams. Someone in college or who has been
through college in a science major would be very helpful to me to see
what they did, or suffered with. I want to know what is part of my
attitude and what is the disease. I agree to a point attitude plays
a huge part in out health and how we deal with different diseases. I
work in a children's hospital and see how it affects patients with
psychological to cancerous diseases. It can make or break a life,
literally.
I am also looking for anyone from utah,hopefully close to SLC to
correspond with.
Also, so that people know, Narcolepsy is a genetic deffect where the
part of the brain reponsible for slepp produces an extra protien
which confuses the brain and causes it to interpet the protein
chemical as tiredness. Drugs just override this interpretation.
This is medical fact from the study of narcoleptic dogs released a
couple of years ago. if anyone was wondering, i have read where
people think it's a virus. Usuall 1/3 of a family has somewhat of a
form of this disease, this is true in my family, where 3 of 7 have
been diagnosed.
Sorry this is long. I have too many questions. Thank you for
responding.
Tom

A cool breeze blows across me. My eyes are shut and I smell rain in the
air. Lying comfortably in bed I hear the soft drops of water begin to hit
the patio outside. I feel tiny bits of moisture hit my skin from drops
falling through the open screen door.
Suddenly I sit up. My eyes regain their focus, and I blearily look at the
closed glass door leading to the patio. The sun shines brightly outside, and
there isnt a rain cloud in sight. Shaking off the last vestiges of sleep, I
stand up and walk over to the mirror. I look into my eyes with their still
present lines of sleep. How? Why? I reach for my army map-case turned
pocketbook and pull one of my many journals out of it. Opening the cover,
searching for reassurance, I pull out some worn photocopied sheets that are
folded in half. The loose papers present me with the lines I am looking
for. "Approximately 20% - 40% of individuals with Narcolepsy also
experience intense dreamlike imagery just before falling asleep (hypnagogic
hallucinations) or just after awakening (hypnopompic hallucinations)".
As the school day begins, I slouch comfortably in a chair idly doodling on
some notes. Glancing at my schedule I mentally list out my classes for the
day; Euro History, Brit Lit, Spanish, Comp, Latin, and Chem. Noting to
myself that today is lecture group for Comp, I head off towards the first
classroom.
Euro gallops by as the wayward Fourth Crusade accidentally sacks
Constantinople. We all discuss the morals (or lack thereof) of Chaucers
Canterbury Tales in Brit Lit. Spanish is mildly interesting as we continue
studies of the conditional tense. Yet I realize what is going to happen as I
take my place in large group for Composition. I fight it, but still my head
droops and my consciousness is transported out of the lecture hall into a
state of semi-awareness. The bell rings and I wearily stand up and shake my
head to try and clear the receding fog. Automatically my hand reaches down
and turns off my digital speech recorder, thankful for the small blessings
of technology. As I do so the urge to flip through my well worn photocopies
returns, but I ignore it. I already know what they will say. "Episodes of
sleepiness in Narcolepsy are often described as irresistible, resulting in
unintended sleep in inappropriate situations. Low-stimulation, low-activity
situations typically exaggerate the degree of sleepiness."
The clock blinks 10:03 PM. I reluctantly clean up for the night, and head
off to bed. Standing outside on my patio, I take a moment to appreciate the
night air and reflect over the days conquests. Satisfied but not
complacent, I prepare for the coming dawn. Tomorrow waits, a fresh new day,
another beginning, another battle, and another chance for victory. Taking a
deep breath, I retire to my room, pausing only to shut the door behind me.

Thanks for your reply. I don't think you understand or really read
my post closely. I am 33 years old and have had all these symptoms
since at least my teens. So it is not love, snoring, or a new baby
that is affecting me. My baby sleeps 10 hours every night so she is
not the cause of night wakings for me. I don't have wobbly knees -
my legs literally sometimes just lose all muscle tone and I start to
fall or will fall to the ground. Sleep paralysis is a normal part of
my life and I've had it for so many, many years that I thought that
everyone had it and that it was normal.

Okay, okay,
I promise. This is the last one... I think...
It's pretty obvious that I was diagnosed with narcolepsy. The doc said I
had a "textbook case" of it, and was surprised that I had managed to keep my
grades up, etc... I started on Provigil, first taking 100 mg a day, then
moving up. I now take a total of 500 mg a day (I addressed my medicine
experiance when Sandi asked about Provigil... I won't go into again here.)
I was finally diagnosed October of my junior year. Remember how I said that
grades would become really important? That semester I recieved B's and C's,
and nearly ended up flunking out of a class. If I take those semester's
grades and GPA them w/o the rest of them, they average to 2.6. 2.6!!! I am
not number or grade oriented, which is why I never got a 4.0, but 2.6!!! I
started becoming really apathetic about school work -- and this is me,
Suzanne, school being the love of my life...
Can we say depressed?
Christmas Day I experianced my first full blown cataplexic attack.
I'm sure those of you who experiance the delightful side effect known as
cataplexy find that you are more prone (no pun intended) to collapsing when
you are stressed. Positive or negative stress. What time of the year is more
stressful than Christmas. (For all you non-Christains out there, forgive my
pressumption in refering to Christmas. It is just a convenient term for the
Winter holidays. Actually, my Mom's Wiccan, so we celebrate Winter Solstice.
But she also forces us to choke down a bowl of borscht Christmas Eve,
because its one of those stupid family traditions from her family. Ah well,
at least she dropped the calf brains on Easter Morn tradition... We also
open presents, jump around happily and act like idiots on Christmas Day. I
mean, who cares what day it is?... Well... When the presents are there I
wouldn't mind it being a few days earlier)
So it's mid morning Christmas day, and we are all being giddy and acting
like the big happy family in the commercials, even the dogs are joining in
and acting cute...
Again, some stupid little joke, while I was already laughing... And I fell
over.
Luckily I was on the floor already, so I just kind of slumped over. Before
this point, the worst attack just made it so I couldn't stay on my feet.
This seemed to last minutes. I kept fighting it, panicking. (which anyone
who has cataplexy will tell you is the worst thing to do, as it only makes
it worse) Scared the bejeebies out of my siblings and parents. The dogs too,
I think. Not to mention myself.
Mumsy dearest says the attack was only about 30 seconds in length, which is
nothing compared to the stories I hear about people who collapse for several
minutes. Needless to say, my laughter had turned to tears when I finally
regained dome semblence of muscle control.
Even now I am getting choked up. Its not that it lasted any length of time
-- I've had longer since. It's not that it caught me completely unawares --
I had minor attacks before. It's that it was so complete -- one moment giddy
laughter, the next collapsed in a heap... The emotions... Something like
that doesn't leave you unscarred.
Whew. Wish I could take a happy turn, but it got worse for the rest of my
junior year. I started experiancing sleep paralysis while napping -- both
falling asleep and waking up. About a month after those began I started
hallucinating, usually while paralyzed. Not all hallucinations were bad
(though if sleep paralysis accompanied, they usually were... erm... are...).
I finished the year with a 3.49. Barely. Apathy had sunk deep. By the end
of the year I just didn't CARE anymore, and hated myself for not caring.
meds?) My idea. Wanted to talk about... Stuff. Dealing with the aspects of
Narcolepsy... That in itself is worth an email or two... It's funny now, to
think of what they told me, and what the psych-person (who could prescribe)
said in the one meeting... And my transformation into a mule. All teenagers
are jackasses at heart. Did I mention I do surly really well?
Now for happy stuff. (flips faded purple/blue hair) I'm all better now.
Still have cataplexy, paralysis, hallucinations, sleepiness, annoying
siblings, parents who care to much (bless them) and a great surly act, but
I've got it balanced out. For now. One day at a time. I wrote a college
entrance essay on that... I'll post it if I can find it.
I'll be going to college next year. Hopefully to Smith College up in
Massachusetts, my dream school (and I'm sure most will agree that dreams
hold more weight for us). Don't know where we will find the money, but I
worry about that after the high school awards scholarships.
Oh yeah, I now make A's and B's... This semester is frustrating 'cause all
my B's are borderline... One or two more percentage points... My GPA is a
3.5 on the nose.
Well, thanks again to listening to a couple chapter's outa my life... I'll
see if I can find that college essay, 'cause I'm pretty proud of it...
Sweet Dreams and Times in Between...
Suzanne

Salve omnes! (Latin for hello all)
Thanks for the replies to my email. A random quote surfaces... "You can go
a week on a good compliment..." or somesuch nonsense. My week's been made. I
love it when people respond to my writing. When I'm done, maybe I'll post
some of my college essays I wrote when applying...
So it's the summer of my ninth grade year. I worked at Girl Scout camp as a
volunteer and took various leadership trainings through the council...
etcetera and so forth (did I mention I'm a Girl Scout of 11 years? -- Gold
Award and all! Not that I'm impressed with myself or anything.)
Sophomore year came and went, the only thing being my grades dropped a bit
(3.7ish). My cat-naps increased gradually. My knees would buckle randomly
while walking through the halls. Almost like my conciousness would blink.
Just enough to throw me off. For the first time in my life I found myslef
starting to struggle in classes other than math. Dad continued baiting me at
the dinner table (and anywhere else he caught me off guard). It was some
time in that year that I was able to laugh hysterically standing up for one
of the last times. From then on out I would end up on the floor. Mom got a
bit worried about my dozing off in class and we saw a doctor. He said it was
normal even though Mom repeatedly stressed how other classmates didn't doze
off as I did, and how I got more sleep than most, and ya-dee-ya-dee-ya-da.
We ran thyroid tests, anemia tests and whatever else they could think of.
Nothing. Late in the school year i got my camp physical. Woohoo. Was that a
fiasco.
The poor doctor must have been hit with a lawsuit or something before,
because he really went a little overboard. I asked about my wobbliness