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Hello everyone,

I applied for SSI a couple of years back and now receive it. SS gives everyone a hard time so dont become disillusion. Very few people get accepted the first time or even on the first appeal. You have to wait to until you file your third appeal to see the judge. This is when you will be accepted. When accepted you will receive all the money from the day you applied. I receive SSI for Narcolepsy. Nothing else. Here are some helpful hints to getting accepted. I received this advice from another Narcoleptic. It worked for me. The judge even stated he didnt even know why I didnt get accepted along time ago. I am passing it on to you guys and hope that it works for you.

1) Go to all the doctors you have been to and get a copy of your medical records. Make sure the records you have state your diagnosis. (Include this with your application and again with your appeal. Dont just let SS get the records for you. I highlighted anything that pertains to my narcoleptic diagnosis. Make sure you include a copy of your sleep studies).

2) Go to your doctor and have him fill out a form that will state what you can and cant do. I created my own form. SS will mail you a form get that filled out as well but the reason for creating your own form is because their form does not take in to consideration a lot of things that deal with narcolepsy. Your form will include more detailed questions and symptoms. I did this several years ago I will look for it and post it in case you want to use the same format. Make sure your doctor signs, dates and stamps it. That is very important to make it a valid document not just something you created on your computer.

3) Get two statements from your family members or friends and one from yourself stating how your narcolepsy affects your daily personal and social life. Give a lot of detail on how hard it is to accomplish simple task due to lack of energy. It is important that the people you choose are the same people you list on your application. Even though SSI is suppose to contact them they rarely do. So by having these statements you are including important information that they will not even bother to obtain. Make sure the statements are signed, dated and include valid contact information (address, phone numbers etc.) You might even want to get it notarized. Again I will look for a copy of one of my letters and post it.

4) It is very important that when you fill out your applications you take your time and give detailed information. Stress how doing everyday task is difficult because of lack of energy. And how it affects your social life. For example they ask about doing daily task such as cleaning. Let them know that some days you are so exhausted that you are unable to complete everything. Due to lack of energy some things are left undone.

My doctor stated I was unable to travel alone because my C. So I let them know that I needed to be accompanied to be able to accomplish many task. I dont know if this applies to you but if it does, stress it. Stress how limited your social life has become due to Narcolepsy. Again if it applies, Stress it.

Over the weekend I will look for my case and make sure I didnt forget anything. Good Luck. Hope this helps.

~Pat

Pat,
Thanks for your input. I wish I'd had this info when I filed but then again, it may come in handy in the future...I'm still not through all the SSA hoops.
anjelica

Hi Pat,
Driving is a highly individualized thing. I've been driving okay for
years, since I've become medicated. Ritalin gave me a bi-polar kind
of effect, and by 5pm on the way home I would get sleepy at stop
lights, and sometimes the person behind me would have to honk the
horn to alert me. I have known of one narcoleptic in my support
group who worked a vending machine route, and was able to drive for
hours at a time without falling asleep! Although i know that this
person is the exception, totally. I know that if I sit in the
passenger side of the car, I'll fall asleep, but like others have
said, driving is totally different, because you have something to
keep you mind on.
I'm on provigil now, and it's great. There are times when I get
sleepy, and I pull over and get a soda or in a parking lot and take a
micro-sleep. Then rarin' to go again. I can drive long distances
occasionally. But not on a daily basis. I drove 4 hours by myself
to see a friend, and as long as I drive first thing in the morning,
I'm okay. I stopped and rested, of course. It's actually easier for
me to drive a long distance in the car when someone is sitting next
to me talking about interesting subjects. But this might trigger
cataplexy in some, as I like to laugh a lot!
I'm finding that in life, (I'm 30) I'm having to retest my limits
because I've sheltered myself for so long because of narc. Things
that I've shut myself off from in the past I'm having to reevaluate
my motives, I can't just blame everything on narc. I think I've used
narc to stay out of unfamiliar situations, like meeting new people,
because of low self esteem. Blah, blah, blah. I'm sick of that.
A person who I admire once said that narcoleptics are so talented
that we should all go in and form a corporation where we can all pool
our talents, and feel free to sleep or cataplex anytime we want. ANy
ideas for a corporation? I think it's a neat idea.
Beth

Interesting post. My understanding is that researchers are still not
sure what causes low levels of hypocretin in most narcoleptics. They
don't know if it's environmental (virus, illness, etc.) or biological
(immune system attacking itself). I would be guardedly optimistic
about a cure. What we all need to do now is join some sort of
organization like Narcolepsy Network, (just happens to be the one I'm
familiar with) to keep up with latest efforts to educate legislators
and NIH officials about the importance of keeping the research funded
until a cure is found. (With what little energy we have, of course!)
Stanford U. and I believe there is one other CA university that are
really doing this type of research.
Beth

Hello There Misha and Brian,
My name is Matt and I was reading what you wrote
about your husbands narcolepsy and he sounds like his
narc. is exactly like mine. I am 28 and was diagnosed
with narcolepsy back in october of 1999. I had
symptoms of it (that I can remember) back in 1996 when
I was 21... I believe though, the start of it was in
1995... I had just came out of a 5 year relationship
and did not take the break up well so I got to where I
was'nt sleeping at night then it turned into even if I
wanted to sleep I could not. I worked full time
putting in 40 to 68 hrs a week driving heavy equipment
(bulldozers and such). I would be driving home from
work and blacking out and not remembering parts of the
drive home. I went to the doctor they said I had
fatigue memory loss and cut back my hours at work for
1 month which did'nt go well with the boss so I got
fired for it. Now jobless and had plenty of rest I
still had the problems driving. It really seem to hit
me all at once with the sleepliness then the cataplexy
started it's way in. I kept seeing doctors but they
all said it was depression although I had did a ton of
research on narcolepsy and told every doctor I knew
that was what it was but still they just gave me
anti-depressants and left it at that... finally I
found a doctor that agreed with me and sent me to see
a specialist. Did all the test and yep I had
narcolepsy. They put me on provigil and a
anti-depressant for the cataplexy and to help me sleep
at night.... both worked great but after 2 years I was
having problems with my stomach from the
anti-depressant then they switched me to prozac which
did nothing for me I got tired of all the pills and
bullshit so about a year ago I stopped taking all of
them, at first it hit me hard being without medication
but, slowly I actually started feeling better and my
narcolepsy started fading... now the cataplexy is
still kind of bad but only if I am fairly tired and
start laughing.... I don't have much trouble driving
at all... I live in Ohio and I have drove by myself
from here to MI. here to TN. and I use to live in
Myrtle Beach, SC and drove back and fourth from there
to here all the time... I know when a sleep attack is
coming and all I have to do is pull over and either
take a quick 10 min nap or do something active for a
few minutes and I am fine. I am not recommending
anyone give up there medication and do what I did
because maybe I just got lucky. If anyone at all
wants to talk or wants advice or has any questions I
more then happy to help. Matt

i'm not sure that i do but i am almost 100% positive
i get sleepy driving and riding
fall asleep working, night terrors, and trouble waking from them, and they seem to be so real, and sometimes i can swear i am yet a sleep while having them as i am so aware of my surroundings.
when i'm trying to hold a conversation with someone, i tend to slur my words and have difficulty staying focused, and all i really want to be do is lay down and talk to you later
and i can sleep for hrs.

All,
Hello. I am new here. I was wondering....how do you know if you have
narcolepsy? I have been doing research on the internet, since my
chiropractor recently said some of my symptoms match....but have found
enough info to be able to tell that while some symptoms *do* match nicely,
some don't. And some could have other causes, as I am already disabled due
to alot of old injuries and other problems. And my local Dr. is an *sshole
and will not give me referals for tests. For *anything*. So I am on my own
here.
Valerie J. Rose
pooka@...

pat
how are you around people any social anxiety disorder?
would you be interested in a home party plan opportunity
sandra

Hello, my name is Pat. I have had Narcolepsy since I was 17 years
old.
I am now thirty and find that my symptoms are not as bad as they use
to be. I want to get a job. I am tired of being home. I enrolled in a
program that helps people with disabilities find a job that they can
do. I was wondering how many of you hold full-time jobs? Is the
stress
to much? Any emotions triggers N and C attacks. I am actually scarred
about getting a job outside the home (I currently work on my
computer)
but think going out everyday and meeting new people not to mention a
regular paycheck will help me a lot. Any thoughts???
Oh by the way, how many of you drive? Do you feel safe? I never
learned to drive and want to learn but I don't know if it would be
wise. I don't want to get into an accident because I fell asleep at
the wheel.

I have heard of a study by the Canadian military of the effects of Provigil
on people without N.
Apparently it keeps them awake for up to 72 hours, but doesn't nessessarily
keep them 'alert'.
Other comments interspersed below.
...... Original Message .......
On Mon, 20 Jan 2003 09:54:11 -0800 (PST) James Sindelar

experimentation has already resulted in most serious consequences.
Currently two Illinois Air National Guard pilots are being court martialed
(tried for murder) in the bombing of Canadian forces in Afghanistan. The
Canadian forces were conducting a "live fire" exercise. When the two
pilots spotted the shooting below their aircraft, they perceived that they
were under attack and subsequently released a bomb that killed six men (the
complete story can be accessed on the Internet).
given amphetimens prior to flying and anti depressants upon returning to
their carrier. As anyone who has been on Ritalin or another amphetimen can
testify, these medications can cloud one's judgment and create a sense of
paranoia--not exactly the best of mental states to be under when flying an
aircraft outfitted with high power explosives.
IIRC the story I read specified 'low doses' of amphetimenes - has anyone
seen some actual #'s?
acknowledge this and discontinue this practice, additional tragedies are
bound to occur. In the rush to have someone to blame for these unnecessary
deaths, the effects of these medications may be downplayed when they may
have just been enough to cause this type of error in judgment.
The impression I got from the story I read was that this isn't an
experiment but standard practice in the Airforce. The story specifically
mentioned that before being given amphetimenes the pilots are checked for
health and their use is monitored.
(BTW I don't necessarily BELIEVE any of this - it's just what I read)
Does anyone have a link with better info?
~Tom

Peter, this is exactly what my husband's neurologist told us back in April
when he was dx'd. I am so hopeful, just keep praying all the time about it.
Thank you for sharing those tidbits from the program, it is very
interesting!
Misha

A recent message cited military interest in sleep control drugs. This experimentation has already resulted in most serious consequences. Currently two Illinois Air National Guard pilots are being court martialed (tried for murder) in the bombing of Canadian forces in Afghanistan. The Canadian forces were conducting a "live fire" exercise. When the two pilots spotted the shooting below their aircraft, they perceived that they were under attack and subsequently released a bomb that killed six men (the complete story can be accessed on the Internet).

Recent developments in this case acknowledged that the two pilots were given amphetimens prior to flying and anti depressants upon returning to their carrier. As anyone who has been on Ritalin or another amphetimen can testify, these medications can cloud one's judgment and create a sense of paranoia--not exactly the best of mental states to be under when flying an aircraft outfitted with high power explosives.

If the military psychiatrists carrying this experiment out don't acknowledge this and discontinue this practice, additional tragedies are bound to occur. In the rush to have someone to blame for these unnecessary deaths, the effects of these medications may be downplayed when they may have just been enough to cause this type of error in judgment.

James Sindelar

Seen the Horizon program on TV in the UK recently and made me think
more about the recent breakthrough in Narcolepsy (and do some
research)
I hadnt understood how significant the discovery is regarding
hypocretin ect. This was a tremendous 'accident' / coincidence
Kilduff recounted on the TV program, as he wasnt even researching
narcolepsy at the time. Years earlier he was doing narcolespy
reaearch which he agreed was a noble cause but it came to a dead end.
He left it and moved onto weight control drugs and by 'complete
chance' found he had infact found the cause of narcolepsy! Its by far
the most signifcant discovery made concerning narcolepsy
It could well be a God - send for many ...
The penny dropped yesterday and narcolepsy symptoms could be
eliminated within around 5 to 10 years, which seems almost unreal !
Its interesting, and if you go to not recently updated web site it
will still say 'the cause of narcolepsy is not known' ect)
I heared an argument (I think on this list) that the drugs companies
are dragging their feet on this one. However one person pointed out
that there is a lot of interest from the military regarding such
sleep control drugs.
Peter.

yes very interesting
thanks
sandra

The Narcolepsy Network website FAQ section is succinct and quite well done in answering many of the questions raised regularly on this group site. The URL link is below:

http://www.websciences.org/narnet/default.html

I have also found the updated Stanford Center for Narcolepsy website most helpful:

http://www-med.stanford.edu/school/Psychiatry/narcolepsy/

I have provided the above not to limit the important ongoing exchanges on this site but rather to offer immediate help for pressing concerns that one might not want to wait to be raised here.

I have yet to understand why there are different medications prescribed to treat EDS and cataplexy. Research has long acknowledged that cataplexy is merely an instant episode of EDS, yet there are the typical stimulants used to treat EDS while antidepressants are prescribed for cataplexy. My own conclusion is that the antidepressant tends to flatten one's emotions and thus helps avoid the emotional reaction that triggers the cataplectic episode.

I have been surprised to read recent comments and concerns regarding Efforex and other antidepressants as raising one's blood pressure. Switching recently to Efforex from Vivactil, I have been pleased to find that I can play tennis without having cataplectic episodes for the first time. My blood pressure gradually increased over twenty-two years of taking Ritalin and Cylert that increased my pulse rate about twenty beats per minute over non-medicated status. Some of this increase I am sure has to do with getting older and not controlling my weight. Taking standard blood pressure and cholesterol lowering medications (Norvasc and Pravachol respectively) has worked to bring my blood pressure and cholesterol into the normal range.

Enter Xyrem that was originally set forth to treat EDS, but has now been FDA approved to treat cataplexy. Again I appeal for individuals taking Xyrem to respond regarding their experiences with this medication. I feel that this is important and have set up an appointment with my neurologist to try it.

This medication (Xyrem) offers a distinct difference to the standard stimulant approach of all the other medications that attempt merely to forestall/postpone the inevitable sleep attacks. Xyrem purports to induce a sleep cycle approximating that of normals. I have wondered what that must be like because I have had narcolepsy since age sixteen (now 61), and I do not remember.

James Sindelar

Gee, being awake is fun!~

Hello All,
BEar with me, my provigil is just starting to work, so I can
literally move mountains (but not a move toward the treadmill do I
make!)
I just joined Narcolepsy Network, which is an advocacy group for
sleepyheads like us, and our families, doctors, and anyone who is
affected by narcolepsy. I encourage all of you to join; they sent me
a WONDERFUL info packet about narcolepsy, and Just when I thought I'd
read it all about narc, here are so interesting tidbits:
1. aerobics, acupuncture and certain Chinese exercise are thought to
change brain chemistry. (Thought to improve general health.) (That
is, if you can do it without falling asleep or cataplexing out!)
2. Hypnogogic hallucinations are often of hearing or seeing a
burglar. (I thought I had just watched too much news as a child.)
3. "It has been suggested that, if a normal person stayed awake for
three days and nights, and then attempted to solve a complicated
problem, the experience would be similar to what a person with
narcolepsy lives with daily." p. 19 Narcolepsy, A Guide to
Understanding, Narcolepsy Network, Cincinnati, OHIO website:
www.narcolepsynetwork.org
Hope you all found this at least somewhat interesting.
Beth

Hello everyone, Im 28, male, live in Ohio and have narcolepsy and
cataplexy. I was diagnosed with Narc. back in 1999 but have had it
since around 1996 but with all the doctors I seen is was something
else, mainly depression "so they thought" LOL My narcolepsy has
actually faded over the years, it's not near as bad as it use to be
but the cataplexy is still fairly bad but I have learned to control
it. Anyhow my name is Matt and if anyone every wants to talk about
narcolepsy or whatever just leave a message here and I will get back
as soon as I can :) Take care all

Hi PJ,
As a social worker with narcolepsy, I can tell you that there are therapies
that can help you overcome your fear of the ice. (Behavior modification
especially) I'm sorry that you had to give up such a wonderful career; it
sounds like it would have been an interesting one.
It wouldn't hurt to seek out a therapist (social worker, psychologist are
usually the best; psychiatrists nowdays focus more on medication management
than on therapy.)
Best of luck to you,
Beth

Just recently, after complaining about unusual headaches and dizziness I get on the upper levels of the concert hall I work in, my doctor told me that my blood pressure was dangerously high and I am very much at risk for a stroke, probably sooner than later.

I've been taking Effexor for a few years now and I also take a lot of Dexedrine, which I've also been taking for several years.

Nobody was surprised that my BP is what it is. It was just a matter of time.

So, we're dealing with the BP with appropriate meds and by decreasing the Effexor and replacing it with another antidepressant which hasn't been decided on yet. I'll let you know.

At one time, I was taking Paxil and that was when I started or became aware of experiencing cataplexy. I was so freaked out by the cataplexy, not knowing that I had Narcolepsy, that I refused to even think about taking Paxil ever again. My doctor, unsuccessfully, tried to convince me that the cataplexy was not a side effect of the Paxil. As soon as I started on the Paxil I started to fall over and my knees began locking and buckling and this terrified me. The cataplexy ended, my nearly twenty year career, as a figure skating coach and as I was absolutely certain that Paxil was responsible for my cataplexy, I blame the Paxil for my now, irrational fear of the ice. Although several doctors have tried to tell me otherwise, I'm still not convinced.

I've been on dozens of other antidepressants over the years but nothing specifically to deal with cataplexy since I'm not bothered by it too often. Is anyone surprised when I say that I've had very few episodes of cataplexy in the years following the Paxil incident?

I'm sure everyone deals with each blip as it comes... one after another... cause Narcolepsy is kinda like that, huh?

Recently several reports have been publicized regarding the resulting depression experienced by long term users of cocaine. These go on to explain that cocaine appears to severely damage the pleasure centers of the brain resulting in depression.

The Ritalin that many of us have been on (myself for 22 years) is a derivative of cocaine which is why it is a controlled substance and used to free base by drug users. This is also the reason that kids who have it prescribed for attention deficit disorder skip their own taking it to sell to friends.

Having experienced depression when on Ritalin, I also needed a day off medication each week during which I experienced greater depression problems. I thought that the Vivactil that I was taking was for my Cataplexy; but now I wonder whether this antidepressant wasn't just for the depression caused by Ritalin.

As a small population, I do not imagine the medical community will be interested in pursuing the connections above. However, I can't help but draw my own conclusions.

Can anyone comment on their use and effects of Xyrem? How does it effect the EDS symptoms. What other medications do you continue to use in addition to Xyrem? How difficult is the prescription process?

James Sindelar

Hi Jamie,
Sorry to hear about your high blood pressure. My doc put me on Accupril for
it, and now my blood pressure is pretty much 120/80, or maybe a little
higher.
As far as antidepressants for cataplexy, I've been taking Celexa for several
years now, and love it. I was on Paxil before that, which was fine, but
Celexa was a newer drug, and I had heard that people on it weren't
experiencing the weight gain as much as with other antidepressants.
I wonder, taking a stimulant, I guess I assume that would increase one's
blood pressure. But what can you do?
Best wishes,
Beth

http://www.alternativementalhealth.com - this is a website from the
Safe Harbor Project, which helps people who want to get off of
psychotropic medications. They refer people to doctors who provide
alternative treatments, and who can help people safely get off the
medications.
The key is to not just ignore the underlying condition, but to treat
that, so that the psychotropic medications are no longer necessary.
Good luck. If you can't get what you need from the website, give them
a call. I've spoken with Dan Stradford myself, and he's really helped.

Does anyone have a substitute for Effexxor. I have been taking it for the last 2 years. However, I am experiencing high blood pressure from it and have to take high blood pressure meds as a result. I like what the Effexxor does for my C. A=ny ideas?????

From: PJ Gariepy
Cateplexy freeze?
Could you explain please?
Many years ago, I experienced very odd episodes of what were finally
dismissed as cateplexy. The word "freeze" could somewhat describe
these episodes, although I've never heard anyone use it when
describing cataplexy.
So, I'm very interested in hearing your elaboration in hope of
filling a gap.

Actually cataplexy (catalepsy) has been researched more thoroughly and is now known to be a mini-sleep attack complete with dreams, etc. Most narcoleptics experience the inability to maintain control over one's muscles in one form or another when triggered by sharp emotions particularly anger or joy. In addition to the "freeze" that I referred to in tennis, I also experienced a buckling of the knees in football or other times when I would become angry quickly. When expressing positive emotions toward individuals such as students that I worked with as a school counselor or my own children, I tend to have a slack jawed expression that some refer to as a "shit eating grin".

Neurologists tend to prescribe some type of antidepressant for cataplexy to even out the emotions and dampen the effects of quick reactions. I was on Vivactil for many years with somewhat limited results. Effexor has proven thus far to be more effective for me.

I would hope that those taking Xyrem would comment on their situation vis-a-vis cataplexy since the FDA appoval of it was based on its effectiveness with cataplexy. Are you taking additional medications for cataplexy such as Effexor?

From: rpmrem@...
(BG) I have never played organized tennis; but I have played
pickup games on occasion. I have a lot of trouble with the
"big C" when playing tennis so I don't play but rarely. In my
youth I could play a pretty good game with no C. But as an
adult, it is a pain. All I can do is TRY to put my racket in
front of a return and home I hit it and it goes back over the
net. I have the same problems with ping pong - and I use
to be a very good ping pong player.
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.431 / Virus Database: 242 - Release Date: 12/17/02

Hey Jim,
Did I hear you say tennis? I too am a tennis player. Where do you play? Do
you play USTA league maybe? I know another pwn that is a tennis player;
she's actually a pretty solid 4.0 player. I luvvvvvvvv mixed doubles, lol, I
promise to put in a big serve so you can slam an overhead at the net, hehe.
Have played 7.0 and 8.0 USTA mixed.
Just curious, do you get a big of c when an easy overhead smash or approach
put away comes your way?
regards,
vickithesleepytennisplayer

Having done extensive research (prior to the existence of today's internet resources)on the causes and social effects of narcolepsy, I accessed one of the earliest studies done on narcoleptics using the Minnesota Multiphasic Personality Inventory (MMPI). One of the main conclusions from that study was that there appeared to be a high correlation between individuals with a highly moralistic background and narcolepsy. The early hypothesis from this study set forth the cause of EDS as well as cataplexy as resulting from the individual's inability to process strong feelings of anger, sexual desire, etc. on a conscious level. Hence as these feelings that were in conflict with the individual's moralistic ideals peaked, the psyche sought relief in sleep where the internal conflicts could be processed.

This theory sharply contrasts to the current thinking in the medical community that emphasizes the physiological roots in the hypothalmic areas of the brain and low cerebrospinal fluid levels of hypocretin-1 peptides. However, this physiological analysis does not totally negate the former hypothesis as to the psychological impetus triggers for narcolepsy experiences.

James Sindelar

Cateplexy freeze?

Could you explain please?

Many years ago, I experienced very odd episodes of what were finally dismissed as cateplexy. The word "freeze" could somewhat describe these episodes, although I've never heard anyone use it when describing cataplexy.

So, I'm very interested in hearing your elaboration in hope of filling a gap.

Patricia

Hi Beth,
Please let me respond to your questions one at a time.

neurologist. But preferably one that specializes in sleep disorders. My
sleep doctor,
pulmonary specialist has treated my apnea with bipap. He then referred
me to a neuro
that specializes in sleep disorders. I liked my sleep doctor, but I do
not like my neuro.
He won't listen to me. But he is the second one I've seen. And a little
better than the
last one. And sleep doctor highly recommends staying with this neuro.
So I guess I will
for now. My sleep doctor was board certified, but I don't think that my
neuro is.
job. Plus my neuro said no dangerous work. I tried to fight that with
ADA, but after 4
attorneys, I'm about to give up. We were up to our eyeballs BEFORE I was
sent home
from work due to several bad financial decisions that I made while
drugged up on anti
depressants. My wife is working 2 part time jobs trying to keep us
going. My family is
helping a lot, but they can only do that for so long.
No, but I have been thinking about it. Well, other than one house and
two mobile homes
that I've set up for rental property here on my 25 acres in the last 3
years. If not for that,
I'd been in even worse trouble.
The technician that did my sleep deprived EEG recently made that same
remark!

HI, My name is BEth, and I believe I've posted here maybe once.
Want to utilize this site more for support and encouragement from
others going through the trials and tribulations of this goofy
diagnosis.
I'm curious about several things:
1. Has anyone been on Xyrem? Has it helped? Were nightmares or
wierd dreams a by-product of this med?
2. Am I the only one with doctor problems? My best friend is an
M.D., and believes me when I tell her that I know more about
narcolepsy than my pulmonologist. I live in a town with a lot of
hospitals (and sleep disorders clinics) and have been through two
doctors now. I've checked the American Academy of Sleep Medicine (or
whatever they are called) website, and there are only seven doctors
in my entire state that are board certified to practice sleep
medicine! Scary. My last doc had never even prescribled Xyrem to
anyone, or known anyone who had taken it.
3. Does anyone suffer from severe feelings of guilt? Not being able
to get things done on time, for school, work, etc. I'm trying not to
be so hard on myself, but I feel like I should be accomplishing
more.
4. Has anyone been able to run a business from home and do without
going broke?
Alright, enough for one day,
Love,
BEth
Just a thought, in my research, I've found that narcoleptics are
considered above average in intelligence. That's a little good news
for all of us sleepyheadS!

I took Ritalin and Cylert for 25 years. I found Ritalin to have a greatly diminished effectiveness over a one week span of time. I had to take a day off of medications on week ends in order to have it work at the beginning of the following week. On the day off, I was really a "dolt" and got little accomplished as well as experiencing serious depression. Ritalin even with SR versions was always tricky to time as to beginning and end of effectiveness of each dosage. Over the span of years, my blood pressure gradually rose making the choice to switch medications easier.

With Provigil, I feel much less "wired". I do not take as much medication as you do, but I know that I would have to increase dosage if I were trying to maintain employment (I retired prior to switching medication). I still use Cylert (Pemoline) to suppliment the Provigil.

In the past I also took Vivactil for cataplexy. Recently, I switched to Effexor. I have begun to play tennis again with excellent results. I have been able to play multiple shots without suffering the cataplexy freeze that made past participation so frustrating.

The hardest thing to accept about medications for narcolepsy for me has been their limited effectiveness. None of them actually cures the condition, but they merely serve to postpone the severe need for REM sleep. Eventually there has to be a "crash" to allow replenishing of the supply. We are all like cars with two gallon gas tanks. We can refuel quickly, but we can't go very far before stopping again.

I am currently awaiting my neurologist's becoming certified to prescribe GHB Xyrem. According to a contact who also has narcolepsy and works at one of the major clinics, Xyrem induces deep REM like sleep over a 4 hour span which is then repeated. Because this medication has achieved notariety as the "date rape" drug, the monitoring of prescriptions will be even more stringent than with Ritalin.

Jim Sindelar

Tom,

Wow! Haven't heard much out of anyone here in a while! Just 'cause we're
all tired and grumpy doesn't mean we can't post... :-)
I've got a question for anyone with experience with Provigil...
I started taking Provigil about 2 months ago and it has made a huge
difference! I'm currently taking 300mg/day (200mg in am & 100mg at lunch).
The last 2 weeks or so it doesn't seem to be working nearly as well.
Nothing else has changed in my routine.
My question is: has anyone else had a problem building resistance to
Provigil and what did you do? The doctor mentioned trying Ritalin but I
don't want to unless I have to. Right now I'm trying a wait-and-see
approach - maybe things will get better on their own.
Thanks for any advice!
~Tom
ps: Happy Holidays to everyone!

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I don't have any insurance therefore I can't go to the Dr. although I know what I have. I wish you the best however, in getting your study done, by the way see if the local health dept. can refer you I have thought of doing that myself.
Sandra

Thanks! I'll be sure to email!
Angela

Recently saw Sleep Specialist, have researched living with partners
with Neurological Disorders and interviewed couples where one has a
Neurological disorder.
If you are interested in the factors that impose on the partner
without the disability you can email me lucy577@...
The interviews were most revealing even when the disability was
identified, clarified, treated and managed, guilt remained one factor
that was constant where other factors were at random.
Guilt encompasses a broad range of reasons and emotions but can be
more disabling then the disability.
Neurological Disability Interviewed : Huntington's chorea - Brain
Tumour - Severe Cerebral Dysrhythmia - Cerebral Palsy - Post CVA -
Bipolar Depressive - Korsakoff Syndrome - Geriatric brain degeneration
Bipolar, Epilepsy and Geriatric had more common associated
relationship problems with Narcolepsy then the others but nothing
tangible. Not only were the diseases unique but the degree of
condition separated the condition from itself. 2 families with the
same condition yet because of severity or progression of that
condition it was almost like a different disease.
Marcus

Hi,I am kinda new to all of this and I was wondering if anybody new a
way that insurance would cover a sleep study. My doc thinks i have
narcolepsy but is not sure of it. People have told me i have to go
get a physical and then get refered and such but does anyone know if
I have to do all the running around? Any help would be great!
Angela

If you find a more supportive, user frindly list Please let me know!
Thanks!
Sue

Just a thought I would like to share and this is not meant to be
mean. I have posted several times and really have only gotten a few
responses all of which I have appreciated. But it really seems like
this board has formed a click and anyone outside of it is ignored for
the most part.
I thought this would be a good place to find support as I have just
been diagnosed and medicated. It is all new to me and while family
and friends are good sources of supprt it really isn't as helpful as
others sharing the same experience.
I was really looking forward to a response about my last post, but
unfortunately I guess no one could relate or no one has any
similarities. So I just wanted to say that I wish all of you the
best, I think I will find a board that is more user friendly. Best
of luck to all.

I had problems at school. I went to university and started a couple of college programs but never graduated. In hindsight, I realize that the Narcolepsy played a big role in my failure.s Unfortunately, I hadn't been diagnosed at that time and had no way of adapting. Mornings were hell. Irarely made it to any class that was scheduled early. I never seemed to hear my alarm and even when I did, I struggled to wake up or I'd wake up and then fall asleep again. Sometimes when I did that, I'd have hypnogogic dreams and think that I'd actually gone to class, when, in fact I'd never made it out the door. I'd fall asleep during lectures or I'd find a corner with a couch, thinking that if I'd close my eyes for a few minutes I'd be alert for the next one. Somehow, I'd manage to sleep right through and miss it.

I'd fall behind and get overwhelmed trying to catch up and then my anxiety would destroy any chance I'd have of passing. I'd have panic attacks and wouldn't leave the house, sometimes for days at a time.

I developed major performance anxiety and was not able to write exams so my self esteem would drop until I didn't have any confidence in my ability to complete projects. And didn't.

When I finally gave up I had a very hard time working and keeping jobs.

I managed a career as a figure skating coach and with that I was able to arrange ice times and lessons around my sleep requirements. After many years I started to have cataplexy attacks while on the ice. This absolutely terrified me. I'd spent more than half my life being more comfortable in skates than not and all of a sudden I'd never know if or when my knees would buckle and I'd end up on my rear. I had to give up what I'd loved more than anything.

It was a few years before I was well enough to look for work again and since I hadn't finished school I was pretty much unskilled.

There was a long period with mood swings and depression.

I'm only able to work part time because I can't cope with much stress and I can't risk losing my mind. But since I lack the ability to do much I'm only able to make a minimum wage and the job is just something to get me out of the house.

I didn't mean to ramble but I wanted to say something about that.

Hi, my name is Art and I have Narcolepsy. I was diagnosed about 25
years ago. I've been on several different medications. I have a
question regarding my most recent medication (DIDREX) and has
anybody ever used this for their Narcolepsy? I was told over the
weekend by my pharmacist that it has been discontinued by the
manufacturer. I honestly don't know what to do about having to
change to something else. I've been researching forever on the
internet for other meds such as ADDERALL.
Please comment on my situation.
Thanks!
Art

No just started looking into it lately.
Figured it might be good to help "WAKE" up after passing out?
If anyone has tried it....let us know.
Shiloh

Yes Hannah,

And I threw in my 2 cents worth. Although my poor brain can't remember what I said to who, and I'm too tired to go back and look. My point is, what ever I said, I just felt that someone had been spoken to harshly and it was out of line with the purpose of this group (I believe). If I came across a saying something that sounded different or "pointing fingers" I did not mean to.

Bystander

I don't really have cataplexy...but I do lead a semi-detached life..I am happy,
but not happy I am pretty numb really, though I thought the drama version of "as
the Narcoleptics turn" was pretty hilarious....
sorry to those involved, I mean I do care for people and I am sure there were
real feelings involved,
but thats what I don't get......I guess. I just wouldn't ever involve myself
that emotionally.
So Marcus, I can say, I do like you....to what extent, is simply left to the
ravages of my dissassociation(sp)
pretty funny and smart guy, and I actually relate to what you say...mostly
everything else is babbles and some information.......
now that we are all laying down our chips......
ha ha.
I'm just a silent observer, usually, but I think what is at hand here is really
the issue of psychological damage,
and I'd say from the last few days posts...it's rampad..without,
discluding myself, of course :)
Hannah

My first experience with email and contact with others who have
Narcolepsy have been with this group. It has been a great experience
and I have been introduced to many considerate and informative people.
The problem I am having with email is that other then information
sharing it has the potential to slice peoples feelings like ham in a
slicer. I am concerned firstly that my opinions are too opinionated
because you can't see me and you don't know me. That my opinion is
without sensitivity and is too broad rather then that of the subject
of Narcolepsy.
How I learnt in life was from others because Narcolepsy kept cutting
my attention away from the subject at hand. That's why they thought I
had ADHD.
Because I shut my emotions off early in childhood to prevent Cataplexy
I can't relate to emotion and see it as irrationale. This is my
legacy that effects all my relationships. "CRY ME A RIVER"
No not at all its been fantastic, informative and fun. I haven't
explained myself well enough but thats email and me.
Thank You So Much
Love Marcus

Shiloh,

No, but been meaning to research light therapy. Possibly set it up myself. Do you know much about it?

Bystander

I would think an adult could be wise enough to manage their life.
People with Narcolepsy share a very personal condition that requires
some experimental approach. My sleep specialist required this of me
and if anyone person takes a different approach based on their own
values it can lead to fustrations and people not being treated
appropiately. Not showing all your cards is basically being careful
with how you present yourself. These drugs are medicinal for
Narcoleptics and require trial and error. If someone presents
themselves in a state of anxiety over personal issues and sounds
confused and unsure they could be perceived unstable enough to refuse
Stimulant therapy.
Nothing is black or white and people need support and direction.
The history of the individual is more important then any point of
value. We guide and encourage.
Marcus

Group?
Anyone tried light box therapy?
Or melatonin etc?
Shiloh

Hi everyone.
I wanted to post ealier this week but I just couldn't get it
together. As I said I started the Metadate last Friday at 20mgs in
the morning, with instructions to increase if I felt nec. after a
couple of days. Sat and Sun were ok, but I definitely felt it when
it wore off.
Monday - Thur. were horrible, Wed. was the worst. I was so so so
sleepy that the med. didn't work at all. I was able to control
myself from not falling asleep, but the feeling was horrible. Then
yesterday I took 2 in the am and I felt awake but I could not focus,
it is hard to explain, but I just could not concentrate on what I was
doing, or remember instructions, or if I had done something, I was
unsure of everything. I then took my thirs in the afternoon, and
still I didn;t feel like I was with it.
That said, I woke up today and took 1 pill in the am. Feel great,
very alert and with a solid feeling of being sure about what I am
doing. I took my 2pm dose and so far ok. So what is the difference
between today and the first days I did 1 in the am and 1 in the pm?
I don;t know, all I do know is that if I can achieve this feeling
everday I would feel on top of the world. Maybe it has something to
do with how I am sleeping at night, my doc. did say that I have a
short REM latency and would need something to help me sleep in the
stages I am supposed to, but I have to wait and see if the meds. are
working ok first before she gives me something else.
Does anyone else have daytime and nighttime problems? I would love
to hear what has worked for some of you guys out there. So far my
overall 1 week on the metadate cd is rated for me as unsatisfactory.
Maybe that will change once I am able to control my nighttime sleep.
Thanks for the thoughts!
Kate

I thought about replying to Nancy's message myself but after reading
Marcus' reply I think enough has been said.
I did want to comment on one specific part of Marcus' reply:
tall to reach her
Marcus, I like your sense of humor!! I laughed out loud when I read
that!
~Tom

Henry
Kellerman suggests in his book, Insomnia and Narcolepsy (Brunner/Mazel,
1981)that narcoleptics are frequently "stubborn individuals who tend to oppose the influences of other people.

Really how unusual

They may also exhibit sarcastic and caustic traits and show a tendency to be highly critical towards others."

No how is that true

Often,narcoleptics are very dependent and passive people, and are frequently unable to express dissatisfaction, so large amounts of anger build up inside of them.

Could this explain their venting anger in unacceptable ways
Narcoleptics often cannot tell others directly how they feel about them, and rarely express emotion or affection. Childhood rearing practices may have discouraged independent behavior; some patients were patronized and others were simply badgered with criticism. Aspects of inadedequacy are often present in
narcoleptics, such as the feeling that they can't really DO things.

As a logical corollary, self-esteem problems may be experienced, and narcoleptics may need to constantly reinforce dependent needs.

Regarding relationships,narcoleptics are extremely guarded or distrustful, and make themselves inordinately demanding and defensive in order to conceal these feelings of vulnerability.

It can't be

Sometimes such persons may be quite unexperienced in social
relationships, but need to seem mature, so again, they distance themselves.

Severe depression, stemming from personal dissastisfaction, is often experienced, but those afflicted can be oblivious to its presence. Sometimes narcoleptics will be severe over-eaters.

I have always wondered how this extra 120lbs got on my body

Supposedly sarcasm is directly implicated in cataplexy attacks. Sarcasm allows people to express anger while inhibiting it. I guess this implies that more open expression of emotions might
reduce the frequency of cataplectic attacks.

Is sarcasm abuse and does it hurt the victim

Sometimes, narcoleptics experience extreme stress or anxiety, and the narcoleptic sleep symptom allows escape, a
chance to release tension.

Serious I thought I was coping out with that one

You are a very very sick person, Nancy. I send prayers your way that you get help.

I'm suffering from
Impotence and No Drive?

I counsel men in this area and impotence is 90% of the time psychological. When a man's labido is reduced he immediately panics which then causes concern - anxiety - he starts being pessimistic - what he believes or is worried about becomes a reality.

Too much anxiety and expectation causes impotence.

My partner says it doesn't bother her?

Believe her and consider yourself loved. She wants you not your penis.

Let me take a guess. Making love with you is the result of a good relationship your partner has with you. For you making love is the start of a relationship. Use this time of concern to express your love for your partner in other ways even if you don't get any immediate pleasure or feedback.

but how can I face her If I cannot satisfy her

As a man I find this a strange question. In point form I will take a shot at why you may ask this question.

1 Your manhood identity is based on sex

2 You don't believe her when she said it doesn't bother her

3 Thats all you have done in building this relationship and now you don't know what you are going to do

4 You have lost the only controlling power you had in this relationship which makes you feel helpless, ashamed and weak as a man.

THIS ONE IS THE DANGER ONE If so let go of it, trust her to make good of this opportunity for you to learn what intimacy is. Only through a women can intimacy be acheived. With intimacy sex is the icing on the cake. I would rather the cake but if there happens to be icing as well now and then thats fantastic. But I always remember the cake not so much the experience of having the icing.

Can anyone tell me, is this a side affect of the Stimulant Ritalin?

One of the curious and comical aspects of men who are given Amphetamines for ADHD are the wife's comments.

He is better to live with and he doesn't lose his temper anywhere near as much as before. "But these tablets have taken the animal out of him" Where he use to chase me around and demand sex frequently.

He now has to be encourage or reminded. I miss that attention and that part of our relationship.

or am I stressed about it

Yes and I hear you

and built it up as some mental disturbance
in my head?

This is anxiety relating to insecurity.

Please HELP !

Its sound's like your problem not hers. This pleasing a woman sexually to be a man is a myth. Women use men to gain an orgasim. When a woman reaches climax its because that man has given her enough control within the act of lovemaking.

Relax and give her permission to take control. If she abuse's your trust there is something serious wrong with her. Don't take Viagra its in your head I believe and is dangerous with stimulants.

RELATIONSHIP = Intimacy RELATIONSHIP = Intimacy

SEX

SEX = SEX

Relationship is spiritual, has meaning and empowers union based on trust and respect

Sex is mechanical, can be spiritual, fun, exciting and self empowering

You asked for help and got my opinion

Relax or you may lose more then what you are worried about.

Men who are impotent can be nasty,cruel and hard to live with.

And they also become desperate leading into emotional health concerns and some find a way through intimacy and are better for it.

Its never permanent unless its physical. Give yourself and partner some time. Does everything have to be perfect to enjoy each other.

SEEK Medical help it could be Ritilan.

Marcus

Guess who goofed? None other than yours truly. I thought I was replying to Peter personally and not to the list. I have written some things here that I did not intend for the group to receive. However, I stand on every word I wrote in this reply to Peter. Sometimes the truth comes out in strange ways. I've been dealing with narcolepsy for too long to be any other way than honest with my peers, my fellow narcoleptics. Yes, my face is red, but let the chips fall where they may. Actually, this inadvertant post is a lot better than what I had in mind to resolve the recent thread that I wasn't aware of until I had caught up with my email on Sunday.
I am not insensitive to the problems of people who have difficulties getting a diagnosis. I have repeatedly made remarks about the fact that sleep disorder centers have sprung up like mushrooms and that most are set up to diagnose sleep apnea because of the great number of people with sleep apnea. Although many of those centers do diagnose narcolepsy, most do not. I've always recommended certified sleep disorder centers because the chances of getting an accurate diagnosis are so much greater than the neighborhood "sleep disorder center."

Before sending messages in response to my inadvertant post, I suggest that you take a look at the purpose of this list. The list owner wrote:
This is an egroup on the sleep disorder known as narcolepsy. This site does not offer
medical advice, but is offered as a discussion area for individuals with excessive daytime
sleepiness, cataplexy, or those who have been diagnosed with narcolepsy.
The purpose mentions discussion, not argument, nor debate . Yes, I have erred and I am embarrassed. I didn't know that my response had been sent to the list until I received it.
I apologize to all for the inadvertant post, but I do not apologize for anything I've said. I am a senior member of this group and have been dealing with narcolepsy for a lot longer than most of you have been alive. My sole purpose for joining this list is to help others with narcolepsy. If anyone feels that it is necessary to further chide me go ahead on or off the list.
Since I have mentioned Misha by name, I address the following to Misha. By throwing an emotional tirade against my innocent sentences and by your argumentative debate with another person with narcolepsy, you have shown your real purpose for subscribing to this list. You try to control your husband, a person with narcolepsy, and want to control this list. What you have forgotten is that the archives of this list are public. I hope that one day your husband will communicate with us and discover the archives to use in a divorce action against you. You have violated the sanctity of your marriage by remarking that "he hits holes in walls." It was not the narcolepsy which caused that, but your attempt to control him. As far as I am concerned he has shown himself to be a higher developed man. He chose to hit the wall instead of you! Another person with narcolepsy has tried to be polite by saying you wear your husband's narcolepsy like a tag. I agree totally with that
statement. To be blunt, for the sake of your marriage, I recommend that you seek the services of a clinical psychologist to determine why you are so obsessed with his narcolepsy and your need for control. The treatment of HIS narcolepsy is a matter between HIM and HIS doctor. If you will but listen to your husband, he will tell you what he needs. In some aspects, it looks like you have learned to leave him alone when he needs to nap and have learned to do your own thing, but it has taken you ten years to do so. No matter what you think you know, you will never know what it is to have narcolepsy.

I couldn't care less what you think of me. The world doesn't revolve around you. You are not qualified to judge me. Wanna sue me? Go ahead. I have no assets.

Nancy Valencia

I take 290 mg of Dexedrine every day and I do not experience EDS anymore. In fact, I rarely sleep more than an hour in a day but no sleep is by far more desirable than the other symptoms I experience which recur whenever the Dex dosage is dropped. I haven't recently felt any sleep deprivation. But, that's just me...

From a female perspective so I can't comment on "plumbing".
I can see why Ritalin might do that.
I find I am very weak when I am down off the meds.
For me this is 10PM
I might suggest either doing it while it is in your system,
or asking the doc for a 5mg instant dose ;)
For those evenings you want to play super hero.
Shiloh

OK, this is driving me nuts!!!
I have started on ritalin approx 10 days ago, and now am experiencing
the lowest sex drive of my life. My partner and I used to have very
frequent sex, good sex and lots of it. But now I'm suffering from
Impotence and No Drive? My partner says it doesn't bother her, but
how can I face her If I cannot satisfy her?
Can anyone tell me, is this a side affect of the Stimulant Ritalin?
or am I stressed about it and built it up as some mental disturbance
in my head? Please HELP!

Michelle,
I have been taking Provigil for about 2 months now. A couple of
days into it, I woke up one morning with my left hand and arm
completely lifeless and numb all the way up to the elbow. It took 5
minutes of beating and shaking it before I could lift or even feel
it. At the time, I didn't associate it with my medicine since my
arm had been in a position where it could understandably fall
asleep. After several more episodes of this, (only in one hand or
the other), I started to realize that maybe it was the medicine. I
went off the medicine cold turkey for a week, (which is fine since I
don't have narcolepsy, just daytime sleepiness). During that week,
I did not wake even one time with numb hands. I started taking the
medicine again a few days ago, and am only taking 50 mg (1/4 pill).
I awoke the next day after starting the Provigil again with on of my
hands numb and lifeless. I have even started watching how I
position my arms and hands when I fall asleep, and try to notice
their position when I wake. I do not appear to be positioned in any
way that would cut the circulation; yet, I'm still waking with the
numb, a lifeless hand.
Haven't talked to my doctor yet, but probably will talk to her
soon. Are you still experiencing this, and has your doctor given
you any explanation. I'm afraid that my doctor will take me off the
medicine since it's just to help with sleepiness; the change in my
activity level and productivity during the day has been wonderful,
even at such a low dose. But this hand numbing experience is
starting to scare me.

Marcus, I just responded to you from a thread I wrote. I mentioned
that I have Fibromyalgia, and that my sleep disorder is actually a
symptom of it. I have muscle problems and such, way before meds.
There are a lot of people out there that think these muscle problems
are a result of the sleep problem when in fact it is the other way
around. If you are interested in more info. let me know, or anyone
else for that fact.
I will me going to see my Rheumotologist now that I have an answer
about my sleep issues. Be forwarned thought that there is no cure
for FMS, and by the way there are several other issues that are
charachteristic of FMS, I mean ALOT
Talk to you soon
Kate--

Marcus,

I've checked the link which you posted as per my request. It is an excellent source of information! Thank you, thank you! No narcoleptic and for that matter, no other person, should be without this information. I urge everyone to take a look. The articles about magnesium, calcium, and potassium agree with everything Adele Davis wrote about magesium, calcium , and potassium. I don't have access at the moment to my copies of Davis, but I recall her relating that in her grandmother's day, disobedient, cranky children were given a dose of epsom salts--powdered magnesium. ADD in children is a behavior disorder. The link mentioned so many disorders which others on the list have mentioned. All can be helped by taking magnesium and other minerals and vitamins.

Of course, these electrolytes must be kept in balance. Anyone thinking about taking these minerals should do some serious studying to determine what to take. I've been taking vitamins and minerals for a long time. I'm convinced that we can't get proper nutrition from the foods we eat because they are highly processed, not organically grown, and exposed to all sorts of pesticides--dangerous chemicals for living animalitos including you and me.

I urge everyone to bookmark the link. It's a great reference!

Nancy
P. S. I've taken a brief look at the second link you posted and didn't find relevant information. I'll have to spend more time reading it after my nap.
CAPTION:

Question-A-Day for Friday: What is the most commonly encountered electrolyte abnormality in rhabdomyolysis?
Answer: Hypocalcemia (low calcium) is the most commonly encountered electrolyte abnormality in this condition. It occurs very early in the course of the disease. It is usually self-limited and rarely requires therapy.
Question-A-Day for Saturday: In patients with rhabdomyolysis, why should treatment with calcium be avoided in asymptomatic hypocalcemic patients?
Answer: In these patients, calcium may raise intracellular calcium levels and promote further muscle injury.

I think I better speak to my doctor before I do anything

Marcus

--- In narcolepsy@y..., "Marcus" <lucy577@b...
Thanks Marcus, I appreciate the input. I am sure trial and error
will get me to a point where I will feel functional again. I also
have noticed staying active helps. But on days like yesterday
nothing worked. The doc. told me to try 2 pills of the metadate (40
mgs) and see if that makes a difference. My head feels a bit more
out of the clouds today, but still the tired feeling is very much
present. My eyes are so swollen and dark that if I didn't put on
make up at work people may think I had been beat up. The affects of
me not going into a full REM stage (from what the doc said) are
physically becoming noticable internally and externally. I still
feel like I am about to just break down, physically. Next week they
will put me on something to help with that portion of my sleep study.
I may ask if they should do another overnight to see if there is a
difference between last years results and this year, I don't know.
This is all so new. I also am battling the fact that this is a
symtom of Fibromyalgia (one of many) so all of this is a learning
experience (not a fun one).
Anyway, I gotta keep on going. I have four kids to raise and I don't
have time to be tired and achey and all that. I guess I just hate
the fact there is no quick fix.
Thank you again Marcus.
Kate
term miss a night sleep or only have 2 hrs sleep in a 48hr period.I
don't feel any different However when I did nightshift for more than
5 days I would become sick and vomit and fall asleep eating, drinking
or whatever. Even though I slept all day.
some REM The fourth proved nothing. Fifth confirmed Narcolepsy like
the first 3.
and the Specialists were not up on the latest. Ritalin was given but
didn't work.
they didn't test me on CPAP therapy. DEX was recommended but GP said
No so I did not get help.
breathing - can't be ignored - can cause me to go into
unconsciousness for seconds, minutes or hours.
accept that but my purpose to you Kate with all this information is
this.
from this group, my history and response to Medication I have taken I
can only conclude I have Narcolepsy.

Misha

I am replying again. Seems I made a mistake last reply.

Even now Misha I have a problem with this and now that you have replied I don't feel a freak. I have been pretending like someone who can't read all this time.

I will believe people now, I will not be startled by changed circumstances, I will lose my pride and be more careful with accepting tasks and assignments, driving and accept my condition finally and its acquired dangerous conscequences.

I am not a D#@khead anymore I am a person who has a sleep disorder. This is a big shift from denial.

Thank You Again

Marcus

Misha

In fact just today,
he didn't get much sleep last night, and he called his mom when he got home
from school this evening and was sitting in the chair falling asleep while
talking to her. He doesn't do that much anymore unless really exhausted,
but again, didn't realize he was fading out.

The only time he really seems
to know is when he intentionally lays down and allows himself to fall
asleep, whether just relaxing on the sofa or actually getting into bed for
the night. The "accidental" times, no, he does not know. HTH.

Even now Misha I have a problem with this and now that you have replied I don't feel a freak. I have been pretending like someone who can't read all this time.

I will believe people now, I will not be startled by changed circumstances, I will lose my pride and be more careful with accepting tasks and assignments, driving and accept my condition finally and its acquired dangerous conscequences.

I am not a D#@khead anymore I am a person who has a sleep disorder. This is a big shift from denial.

Thank You Again

Marcus

Misha

Hi Marcus. This sounds very similar to my dh's "awareness triggers". He
does not know when he is falling asleep. Esp. prior to being medicated, he
would really get defensive if I suggested he was falling asleep at the
wheel - the truth is that he just did not realize it. In fact just today,
he didn't get much sleep last night, and he called his mom when he got home
from school this evening and was sitting in the chair falling asleep while
talking to her. He doesn't do that much anymore unless really exhausted,
but again, didn't realize he was fading out. The only time he really seems
to know is when he intentionally lays down and allows himself to fall
asleep, whether just relaxing on the sofa or actually getting into bed for
the night. The "accidental" times, no, he does not know. HTH.
Misha

I have asked this question several times with no result.
I am not annoyed but it is an answer that has been driving me mad
since birth.
Do those who have confirmed Narcolepsy know when you go to sleep.
I am only aware when I drop something, hit something, lean on
someone, someone tells me or I have measured time lapse with clock.
I hate this and bothers me making me feel insecure in my environment.
Marcus

Hi Kate

First of all I am no expert.

I am a 48yr old male who recently found out what was wrong with him. Narcolepsy

Since birth I have always slept or have been in prison with sleep. Not fatgiue, tired or lethargic.

The more active I am the more I stay awake. If I have in the short term miss a night sleep or only have 2 hrs sleep in a 48hr period.I don't feel any different However when I did nightshift for more than 5 days I would become sick and vomit and fall asleep eating, drinking or whatever. Even though I slept all day.

I have had 5 MSLT tests The first 3 I went to sleep in minutes with some REM The fourth proved nothing. Fifth confirmed Narcolepsy like the first 3.

1993 The first was done 10 years ago when I didn't have sleep apnea and the Specialists were not up on the latest. Ritalin was given but didn't work.

1995 1997The second and third were done when I had sleep Apnea but they didn't test me on CPAP therapy. DEX was recommended but GP said No so I did not get help.

2001 No5 was given after only 12 hours of having taken DEX which I was taking for {? ADHD } This time CPAP therapy was used in MSLT

REM onset was seen in minutes

DEX was up from 5mg x 4 a day to 10mg x 4 a day

Finally after 47yrs the fight between me and sleep is played on even terms.

Modafinil (Provigil) Work the best -ABSOLUTELY BRILLANT

TOO MANY side EFFECTS unfortunately

This is me and I don't know what it is like for others

Sleep to me is a brain thing - has no reasoning - is constant as breathing - can't be ignored - can cause me to go into unconsciousness for seconds, minutes or hours.

Before Dex it took 2000mgs of caffiene to get me where Dex does

THESE CONDITONS I CAN RELATE WITH PEOPLE

Tired is body and brain

Fatigiue is weakness overworking

Lethargy is getting over flu.

If I was told I had a hormone problem and not Narcolepsy I would accept that but my purpose to you Kate with all this information is this.

Trial and error

Based on Sleep Specialists, what I have read, what feed back I get from this group, my history and response to Medication I have taken I can only conclude I have Narcolepsy.

It is not what you have but are you receiving the right approach and medication for your condition.

Is it usual to have days where no stimulant helps?

Yes if you are not taking enough medication or something else is going on with your mind or body.

Marcus

For us I think it was $150 a month.
Don't do it.
My doc reported me, narcolepsy doesn't affect driving...
passing out does ;)
But if you are a moral person you will report it.
People with narc. or apnea are 6x more likely to have an
accident....and I am sure you could be negligent or your insurance
if they found out and looked into your background might find you
liable.....or just refuse to cover it as you with held info.
Shiloh
/////--- In narcolepsy@y..., "peterjames122002" <krwilson@c...

Hi everyone!
Been reading through some posts, and I thought maybe you guys could
lend a hand in this area. I finally finshed my studies, my (took it
last year) nightime showed I move during REM, my daytime naps (fell
asleep in 4 minustes, no REM sleep though) showed I am defnitely
sleep deprived. Dr. sent me for head MRI, my brain is fine.
Put me on 20 mgs of Metadate, can take up to three doses a day.
First 4 days I took one pill, by say 1-2 pm I was tired, but
managable. Today is HORRIBLE. I woke up tired (as usual) took the
pill, NOTHING. 1pm took another NOTHING, my body is worn down, I feel
like I am not on meds. They are going to give me something to help
me sleep next week after they see how I do with the Ritalin.
Is it usual to have days where no stimulant helps?
SOOOOOOOOOOO sleepy right now, I am TIRED! HELP!
Thanks,, I really appreciate the input. Looking foward to replies.
Kate

Very Interesting
But I guess it keeps you from having to go to jail if you accidentally killed someone
because we can
i no longer drive and have 4 others i have to worry about the most
i couldn't live with myself knowing i accidentally killed my child because i fell asleep driving
myself however is different
Sandra

Anyone declared that they have Narcolepsy on their car insurance ?
I'm from UK and they have asked whether I have a disibility which
could effect driving ? Isnt that a metter of optinion 0 IOW not when
medicated ect. I wonder how much it would effect a quote ?
Peter.

As I get ready to meet with my neurologist/sleep specialist today(it
has been one month since my diagnosis), I wanted to again say thanks
to everyone for sharing their stories. I feel so much
more "empowered" walking into the doctor's office. I am armed with
pages & pages of internet research, but I also have something much
better - honest opinions about certain treatments. I know I will find
my "balance" - I am not where I need to be, but the "fog" is slowly
lifting. I remember each of you in my thoughts when I read your
posts - I do not suffer as severly as many of you do - but I do share
your pain & wish for more "awake & alert" days for everyone. As I
finish typing, I am fighting the tears - a side effect of my new
medicine seems to be the ability to cry at just about anything - my
family is getting use to it & at times it can even be a bit funny.
Take Care & thanks again. Mimi

I found my tmj and headaches are gone after i had surgery to correct
the alignment and I stopped grinding.

caused me to grind my teeth badly. Clicks and pops and headaches and
I'd chew the insides of my cheeks. I've been troubled with migraines
for most of my life but for some reason I went without a migraine
for almost ten years. The TMJ set them off again.

I didn't break my jaw but it was thrown out of alignment and caused me to grind my teeth badly. Clicks and pops and headaches and I'd chew the insides of my cheeks. I've been troubled with migraines for most of my life but for some reason I went without a migraine for almost ten years. The TMJ set them off again.

No orthosurgeon but I was fitted with a splint which only helps occasionally. I clench and the headaches seem endless still.

Interesting... TMJ and Narcolepsy.

PG

...... Original Message .......

This, to me, is actually the most important distiction. When I first
started on Provigil I was really annoyed by the sensation that I could fall
asleep any time I closed my eyes. Then I realized what an improvement that
is over how it used to be and it doesn't bother me anymore! I use it to my
advantage to catch cat-naps when it's convienient for me instead of nodding
off whenever.
Tom

It's interesting you should mention this (a fact I'm also aware of). My husband "normally" (i.e. unmedicated) has a hair-trigger temper and has a tendency to put his fist through the wall if he's mad. While on the Prozac, he's a different person - it seems to allow him to return to the kind and even-tempered person I married. I believe the worsening of his narcolepsy over the yrs. had a terrible effect on him; the more tired he was, the worse his temper became, and needless to say he was tired *all the time* before dx and tx. I look fwd. to your additional thoughts on Provigil.

Missed this important point and I would like to say if I did not have side effects from SSRI's I would prefer to take them instead of DEX. But Provigil would be my first choice because it corrects my irlene syndrome as well.

( the inability for the brain or whatever to filter the light coming into the eyes correctly )

I am not sure if I sent an email, thought it or deleted it.That was when I said that SSRI's should not be used as a crutch - In context I meant if you can do without any drug or any assistance the stronger you become however if you need a drug or assistance then you will become empowered by a drug or assistance.

Men and Narcolepsy seem like Women and severe Acne that react on emotion. Imagine being a warrior or protector and you get all worked up to kill or defend and just as you reach yor peak to attack your flat on your face with cataplexy making those who you need to protect and yourself vulnerable to the weakest of all. I have been robbed because I could not continue the struggle. Here I am laying flat out and a theif putting his hand down my pants taking my money. All I could say was AAAH LEEEEVE MMMMEEEEEE AAAAALOOOONE. I couldn't even say P#@# Off You B#@#ard

As a woman your beautiful but when you get close to going out, or meeting someone you feel important, attractive and something inside you makes feel special to be a woman and then with that feeling or emotion your face breaks out in bulbus corpulses of red feverish yellow headed pimples all over your face. Your beautiful but no one will see that but some will. She is beautiful but when she gets emotional she has a skin reaction.

Marcus

Any comments on fasting with narcolepsy?
I find I get sleepy after big meals and am thinking of fasting.
Anyone fasting this season?
Shiloh

Group can anyone comment on these recommendations?
Has anyone tried any of these and had good/poor reactions?
*Essential* Nutrients
Calcium and Magnesium: Cal, 2000 mgs daily, at bedtime; Mag, 400 mgs
twice during the day and at bedtime. BTW: take chelated Mag! These
are needed for energy production and the nervous system.
Choline: 300 mg daily -- acts as a neurotransmitter and is important
for brain function.
Chromium Picolinate: 100 mcg daily -- boosts energy and regulates
sugar metabolism.
Co-Enzyme Q10, Co-Enzyme A -- recommended dosage on label --
promotes circulation in the brain.
Amino Acid Complex -- as directed on label -- Increases energy
levels; needed for proper brain function. Use a formula that
contains ALL the Amino Acids.
L-Glutamine: As directed on label; take on an empty stomach. Do not
take with milk; take with 50 mg vit B6 and 100 mg C for better
absorption --
promotes mental ability. Known as brain fuel because it can pass the
blood brain barrier freely.
L-Tyrosine: As directed; take at bedtime. Important in thyroid
function. Low levels have been associated with narcolepsy.
Nicotinamide adenine dinucleotide (NADH): Important in the creation
and transfer of chemical energy, especially during breathing.
Octocosanol: 100 mgs daily -- Increases oxygen utilization and
boosts endurance.
Omega 3 fatty acids
Vitamin B complex: 150 mg of each major vit B dialy -- Boosts
metabolism and
energy levels and is important for brain function.
Vit C with Bioflavonoids: 2000 - 6000 mgs daily in divided doses.
Vit D3: 400 IU daily -- Essential for calcium absorption.
Vit E: 400-600 IU daily -- use d-alpha-tocopheral form.
Shiloh...had a nap ;)

Many Many diseases mimic narcolepsy.
I was offered:
epilepsy, food allergies, heart problems, borderline diabetic -
hypoglycemia, anemia, thyroid conditions...all of those can cause
episodes of fatigue and uncontrollable passing out.
Excessive fatigue is also a major symptom of cancers etc.
Shiloh

READ THIS FOR A GUIDE AS A COULD BE

http://www.kingsoopers.com/HN_Drug/Mixed_Amphetamines.htm

I think maybe calcium rather then magnesium that is the problem

I don't eat much dairy food.

The tablets I take 540mgs of magnesium and 250mgs of calcium

Note I have to take 4 times the required amount to get relief

http://www.inchem.org/documents/pims/pharm/pimg009.htm

9 9.4.3.4 Skeletal and smooth muscle
Myalgia, muscle tenderness, muscle
contractions, and rhabdomyolysis, leading to
fever, circulatory collapse,

Myalgia refers to achy muscles. It is often an accompaniment of infulenza or other viral illnesses. Myalgia (generalised muscle pain) myalgia

My muscle pain feels exactly like I am getting the flu

Question-A-Day for Friday: What is the most commonly encountered electrolyte abnormality in rhabdomyolysis?
Answer: Hypocalcemia (low calcium) is the most commonly encountered electrolyte abnormality in this condition. It occurs very early in the course of the disease. It is usually self-limited and rarely requires therapy.
Question-A-Day for Saturday: In patients with rhabdomyolysis, why should treatment with calcium be avoided in asymptomatic hypocalcemic patients?
Answer: In these patients, calcium may raise intracellular calcium levels and promote further muscle injury.

I think I better speak to my doctor before I do anything

Marcus

Tom, my husband takes 2 pills, both at the same time, mid-morning (b/c he
works very early and then comes home and goes back to sleep, so he takes
them when he gets up for the day for good). Once in a while he takes
another half pill in the early afternoon if he's having a really "bad" EDS
day/got unusually little sleep the night before. He also started at one
pill and it wore off too soon. I would def. ask about taking the extra a
bit later and see if that helps. It can take a bit of tweaking to get to a
point where you can make it thru the day w/ minimal probs. My dh also now
experiences that same ability to just sit down and close his eyes and be out
right away, but as you said most of the time can actually choose whether to
do this or not, and what a diff., huh? Good luck.
Misha

Group,
My mother was dx'ed with Celiac, or gluten intolerant a couple of
months ago after months of being sick at her stomach. She has since
gone on a gluten free diet and has improved greatly. I recently took
her to her to her first Celiac Support Group meeting. She has hearing
problems and it was a great comfort to have me with her.
The "host" of the meeting seemed very knowledgeable. Before the
meeting started I mentioned some of my problems to her. Definite sleep
apnea but which cpap treatment has not improved at all. And conflicting
doctors opinions about whether I have N or C at all. The host of the
group told me that some Celiac symptoms could be confused with N. EDS,
tiredness, irritable, memory problems, concentration problems, etc. I
intend to research this the best I can and of course talk to my doctor.
Every doctor that I have seen for the last several years agree that I
must have multiple problems going on at once. Actually, that's the ONLY
thing that they agree on. And, I may just go ahead and get tested for
Celiac. I could have both, or more. Oh, and support group said that
Celiac is hereditary.
My question is: Does anyone here know of any kind of relationship
between N and Celiac. Even if it is only a confusion in diagnosis, or
mis-diagnosis.
Thanks,
Bystander

Your two letters were the first thing I read this morning. I wanted to respond
to both but chose just one (hard to do) to "hold down traffic". I was going to
"snip" parts of this one to make it shorter, but could find nothing I was
willing to remove.
Everything that Sue and Marcus have said in their letters is true. Now me, I
get things so mixed up I couldn't remember who said what. Notice I called no
names. I just knew that a PWON was here to learn and understand and had be
treated rudely. I also know
that "whoever" probably did not intend to be "mean". I don't print out a lot of
these letters, but the one Marcus wrote I will. Because it closely matches my
own thinking, only worded better. And a couple of those things I would like to
discuss briefly.
Marcus said: "You are talking to Narcoleptics - we are oversensitive, over
react, are blunt, direct and are explosive. My words to my wife are to you
don't take a person who is tired seriously."
My wife tries to understand this. And I've told her, explained, etc. Then
before I know it, my brian realizes what just came out of my mouth to her. And
after a few minutes to calm down, I always tell her that I'm sorry, or I should
not have said it that
way, etc. But know what? I'm getting tired of hearing / watching me too! It's
beginning to sound like a darn excuse. I hate myself for it. I call myself
trying to control myself and bang! I've done it again. I don't know why, but
she tolerates me.
Marcus said: "Telling someone to shut up is abuse because no one person has a
r