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I'm 29 and have recently been diagnosed with narcolepsy. I recall
falling asleep anywhere & everywhere. It's helped that I've always
been a good student, but I've been embarassed by sleeping at
inappropriate times. I made it through college by not having a full
courseload all of the time. Try to schedule your classes around
your "good" times. I can say that I have relied on coffee(even though
if often would do the trick). I don't have all of the answers,
because I too am stuggling to make it through an exam. I have had
problems passing the CPA exam, because I get so tired and
sleepy...this was all b4 the diagnosis.
Best of luck & take it slowly. I'm sure your extremely smart, b/c
it's v. hard to compete w/ all of the awake folks..and still do
well. Please know that I do understand. I fell asleep during my SAT
test, but made it through the ACT (it's shorter). :)
take care,

My Dr. is an MD (he is both a Pulmonologist and a Sleep Specialist). He has
been very knowledgeable and helpful throughout my testing and treatment. But
then I started seeing him initially because we suspected my problem was more in
the area of apnea (which I do have, but that's only a small part of the
problem). My dx turned out to be IH (Ideopathic Hypersomnia) which he said was
neurological in natural. When I started out, I started with the sleep lab (one
affiliated with a hospital on my insurance plan) and called to find out which
dr's one would need to see to request a sleep study. They gave me the name of
several and I chose one of those. I don't know about other sleep centers, but
mine won't do a study unless one of "their" dr's requests it. Fortunately I
don't need referals to see a specialist.
Everyone has their own preference it seems. In the end, if you find a dr that
listens to you, values your input and is knowledgeable about the spectrum of
related sleeping disorders and treatments available, then go with that one. If
you need help finding one in your area let me know and I will help you track one
down.
Sandi
============================================================
I'm wondering about what kind of doctor you see to treat your narcolepsy - an
M.D., psychiatrist, board-certified sleep specialist, neurologist, etc.? I've
been to a variety of specialists over the years but have never been to a
neurologist and am wondering if I should see one who is also certified in
treating sleep disorders.
I have to find someone/something that will help me stay awake and actually feel
like I am awake......
~Chris in Iowa.
============================================================

Hi all,

I'm wondering about what kind of doctor you see to treat your narcolepsy - an M.D., psychiatrist, board-certified sleep specialist, neurologist, etc.? I've been to a variety of specialists over the years but have never been to a neurologist and am wondering if I should see one who is also certified in treating sleep disorders.

I have to find someone/something that will help me stay awake and actually feel like I am awake......

~Chris in Iowa.

Peggy Gooday <hollywoodretro@...

Now, my questions. Does anything outside of drugs help? Exercise, diet, etc.? Does anyone know if N is tied in with psychiatric disorders such as depression? Is it genetic?

* * * * * *

Peggy,

Your sleep study should show whether you also suffer from a nighttime sleep disorder, making your narcolepsy symptoms worse. Regular exercise and a good diet certainly can't hurt. A lot of people have had positive results with Modafinil/Provigil without the side effects of other stimulants.

Now, for the biggie: it's common to find depression 'tied in' with major illnesses, for good reason. Who wouldn't be depressed at some point, fighting an illness that others can't "see" or understand?! However, a lot of doctors seem to want to blame depression, write out a prescription, and be done with you. In my case, doctors spent (wasted) a couple of years aggressively treating depression - with no positive results - BEFORE a sleep study was performed, yet my constant complaint was that I was exhausted.

As for genetics, I don't know if any studies have shown a link but I haven't looked into it much. Others in the group might know...? My Dad now uses a CPAP (it was tried on me); my brother has PLMDS (as do I) but his doesn't interrupt his sleep; and my niece has sleep problems. It wouldn't surprise me a bit if there were an inherited connection.

Peggy, I understand about the EDS; I haven't been able to work for over eight years because of mine. I was an assembler at a manufacturing plant at it wasn't safe for me to continue working. Besides falling asleep, I spend my "awake" hours feeling half-drunk or in a near-constant state of confusion, fogginess, and searching through muddy water to find a coherent thought.

You didn't say when your sleep study is scheduled; let us know your results, please! I'm still searching for something that will help me be alert enough during the day so that I can return to some sort of work and feel like a productive person again.

Good luck,

~Chris in Iowa.

Hello guys,
Harvey's scheduled for his sleep tests next Monday night and the following Tuesday morning (the 15th and 16th). I was planning to go with him to keep him company and to help him stay awake when he needed to be awake and to make sure that he would drive safely home after his tests were completed. However, he pointed out to me that I couldn't bring my Leader Dog (my guidedog) cuz of the care that would be involved in looking after her needs and also cuz of the possibility that she might disturb his sleep when she needed some outside relief. It was agreed that I'd stay home and look after our 11-year old son and my Leader Dog. I should mention that we live about 100 miles SE of Tucson where Harvey will go for his sleep tests. He said he'll be fine driving on his own but I can't help but worry about it cuz I don't know how he'll be after the MLST tests are done on Tuesday morning. What do you think, guys? Will he be okay on his own? Am I just being a worry wart?
Thanks for any words of advice!
Hugs, Melanie

Hello everyone,
Yes, Harvey still continues to drive although he's not driving as much as he used to. He's been driving for 35 years and, believe it or not, he has an excellent driving record. He did have that one near-miss collision when he ran a stop sign at a highway crossing but that's the only time that he's ever confessed to falling asleep behind the wheel and even then he wasn't sure what "really happened"! However, I have my own observations about the way he drives on long trips away from home. I can't help him with the driving because I'm legally blind but I have learned to never fall asleep when he's driving and to talk to him often just to make sure he's still alert -- I'm serious! When we made a major cross-country move from Michigan to Arizona in the summer of 2000, we also took a 12-week cross-country camping trip up to the Northwest Pacific so that I could see as many sights possible before losing more of my vision. Had I known about the possibility of his having narcolepsy
then, I might have reconsidered taking this trip! Maybe ignorance is bliss cuz I did enjoy this trip and all the wonderful sights we got to see!
Basically, our daily schedule was insane. I could never understand why it took us so long to put our popup camper down each morning -- others were long gone in the early morning hours and we'd be lucky if we pulled out of a campground by 1 pm in the afternoon. Once we'd get on the road, Harvey would drive for hours, long into the night, sometimes pulling into a rest area for a short 3-4 hour sleep, sometimes pullling into another campground late at night. I would have liked a more reasonable schedule, like pulling into a campground before it got dark outside!
One thing I could never understand was why he couldn't read the highway signs as we were driving. We missed a lot of turns and highway exits and often had to backtrack to get back on the right roads. He told me that he had to keep his eyes on the road, that he couldn't read the highway signs. I told him that this wasn't normal, that he was SUPPOSED to be able to read them and drive at the same time! It never was a problem before cuz I was always the navigator, reading the maps and directing him where to go. However, I found myself less and less able to read the highway signs so I had to ask him to start reading the signs to me. When he said that he couldn't do that, it became a source of agitation for me. (Talk about road frustrations!) Another thing I couldn't understand was why he couldn't anticipate the traffic flow and change lanes accordingly for a smoother ride. Often we'd end up caught behind slower moving vehicles while long lines of cars passed us. I told him that
he needed to be checking his rearview and side mirrors all the time but, again, he told me that he couldn't cuz he had to "keep his eyes on the road". Hmm!
The times I became very concerned were those times late at night when I'd ask him, Harvey, how are you doing, and he wouldn't respond. His eyes looked like they were "glazed over" -- I don't quite know how to describe them. It was like he wasn't there but he was still driving the van and towing the popup camper behind us. Maybe it's that automatic behavior that is said to be typical of most narcoleptics. In this case, I'd touch him and he'd jump and say, yeah, yeah, I'm okay! There were a few times where I had to scream at him to pull over just so that I could get some sleep! He'd tell me, go ahead, sleep, I'll be fine! No way was I going to sleep while he was driving! What I don't understand is how he could drive 10-12 hours straight, sleep 3-4 hours and drive another 10-12 hour stretch. Like I said, our schedule was insane! And somehow I knew or felt that I needed to be awake as long as he was driving. Sometimes he'd hit those rumble bumps which indicated that he was
straying across another lane or onto the shoulder of the highway. Thank God for those bumps!
Anyhow, I do know that Harvey exercises greater caution when he drives and I do know that his reflexes have been quick enough to avoid many near-misses caused by other lousy drivers! I also think that since Harvey's become more aware of the possibility of his having narcolepsy that he is driving "more smart", that is, he will not make any more frivolous trips into town but will wait until it becomes a necessity and he will not leave the house unless he's feeling "revved up" to go. He's also agreeing with me more and more that we need to move to an area where we'll both have more access to public transportation.
To be honest, I do like the convenience of Harvey being able to drive. But I would also hope that when the time comes that Harvey can no longer drive safely that he'll have the common sense to surrender his driver license before it's too late.
Melanie

It worked! I'm clean again!!!! How good it feels! Nancy

Folks, I've run two different virus removal programs and want to see if
the freebies worked before I bite the bullet and have to shell out $50

Dear Group,
It has been only recently that, after a lifetime of sleepiness and
inability to sit through a class, meeting, etc., without absolute
painful sleepiness, the possibility of my having narcolepsy is being
considered. I am waiting for my appointment at the UCLA Sleep Center
for testing.
I have had periods, off and on, of extreme daytime sleepiness since I
was about 11 years old. At that time, it expressed itself primarily
in the classroom where I would fear I was going to fall asleep and
fall out of my chair. College was the same - it was a matter of
surviving the sleepiness in class, not the tests, etc. Now I am at
my desk at work, a place of real problem, where I am struggling not
to doze off at my workstation. I have periods where my symptoms are
worse, like several months of really bad symptoms, then they let up
for a while. I also have atypical depression, OCD, and panic
disorder since age 15, for which I have been treated for the past 19
years. Both of my adult children have panic disorder and depression,
and my son has talked about a long history of falling asleep in class
as well. I am the type of person who, if I could afford a life on my
own terms, would do well with a nap of several hours each day.
It was only by fluke that I came upon the idea we might be
narcoleptic and presented it to my Dr. For years I have seen Dr.'s
describing my symptoms, and have been tested and treated for
everything from anemia to depressive-episodes, to the possibility of
sleep apnea, without results. I am currently working at a new job
that involves clinical trials. I found some literature on Modafinil
and read about N, and was pretty convinced that is my problem.
Now, my questions. Does anything outside of drugs help? Exercise,
diet, etc.? Does anyone know if N is tied in with psychiatric
disorders such as depression? Is it genetic? I am trying to learn
as much as possible to keep my busy until my appointment. I need to
know how to stay awake at work. This is a new job and I don't want
to blow it. It is so painful to deal with this, such a feeling of
loss of control.
Any information for a newbie would be greatly appreciated.
Thanks,
Peggy

You are describing cataplexy episodes.
When REM sleep intrudes in to normal awake state
person is loosing the skeletal mussels tone
completely and may fall.
For eye witness it looks like the person is dead
(because he is not moving at all).
But at the same time persons vital sings usually are
normal.
People around could be so frightened that they are
just unable to take real vital sings (puls, blood
pressure, respiration rate).
Good luck. Leo.

hello, just wondering if I can compare notes to anyone in the same
boat I'm in. I'm diagnosed as bi-polar. I tend to get depressed
more than manic, last time I got manic was about 20 years ago. A
few years ago I was diagnosed with sleep apnea, and have been using
a Cpap machine ever since. Just recently I have been
diagnosed "borderline narcoleptic" I don't fall asleep in the
middle of things, but I get sleepy in the afternoons, and can fall
asleep almost anytime. I also have Restless Leg Syndrome and take
Mirapex every night to cool down my dancing feet. My sleep doctor
wants to put me on Provigil for the narcolepsy, but I'm afraid it
might trigger a manic episode. Are there any bi-polar people out
there who are currently taking provigil? Any bad episodes? Thanks.

I tried to email these to jenscribe personally, but got an error, so I am posting to group. To get to these sites, you will need to copy the address and paste it
into your browser. Hope this helps! Kerry
US DoJ's ADA Home Page
http://www.usdoj.gov/crt/ada/adahom1.htm
Americans with Disabilities Act Documentation Center
http://janweb.icdi.wvu.edu/kinder/
The Small Business ADA Information Answer Center
http://www.ada-infonet.org

Hello all,
I was talking the other day to some people who know me and
about my N. Not really ever noticing certain things about my
disorder, disibility whatever one wishes to call it. But sombody
brought up the point of how I scare them sometimes with N. When I
fall asleep sometimes I virtually have no pulse vital signs nothing.
It has happend on more then one occasion people have gotten nervous
thinking I was dead. I was just curious if anyone has experianced
this and or has an answer to why this happens.
Gregory

jenscribe3 <jenscribe@...

Does anyone have any good recommendations, especially for lawyers? I did a google search for lawyers in my area who specialize in ADA and disability discrimination cases, but I don't know how to choose one.

* * You're starting out right. You can call and ask how many cases a year are handled, and if the office handles only disability cases; these attorneys are usually specialized and are more knowledgable on the subject. That will narrow your search. Also, if you use a large office you have not only your lawyer but others in the office working on your case.

Also, do they usually offer a free consultation to see whether or not you have a case?

* * With most attorneys your initial consultation is free of charge.
Hope this helps.

~Chris.

Hi everyone,
I was diagnosed with both narcolepsy and cataplexy earlier this year.
I have been suffering from severe "attacks" for a year or more before
my diagnosis and continue to suffer. When I say "attack" I mean that
the cataplexy causes me to fall, become weak, dizzy, etc.
Recently, my employer had a meeting with me. Some of the topics
discussed I believe violate the Americans with Disabilities Act. I
have decided to pursue legal action, but I don't know where to start.
Does anyone have any good recommendations, especially for lawyers? I
did a google search for lawyers in my area who specialize in ADA and
disability discrimination cases, but I don't know how to choose one.
Also, do they usually offer a free consultation to see whether or not
you have a case?
Many thanks for any advice.
P.S. I am in the Portland, Oregon area so if you know of a specific
lawyer, please send me his/her name.
Jenny

Wow Kerry! I am now very glad mine was just a vivid dream!
Thanks for sharing that!
Sue :)

Randy.... the 'locking up" you are describing I believe is called Sleep Paralysis... I too have these episodes, just the other day I though my roommate came in to wake me to give him a ride to work, and I was waiting for him to tell me he was ready to go, and when I did wake up, I was late to work myself... and when I asked him later that day he said, "what do you mean? I didn't even stay here last night... so I don't know who you were talking to", I also would have bet on the faact that it happened but it sure didn't... hang in there... Pam

This one ought to make you all laugh! Sue said, ..."I was dreaming
about Police in our garage, upon waking I went rushing to the garage
to see what and why the police where here. Thankfully there were no
police."...I had the exact opposite experience. In December I woke
to 6 Police in my garage guns drawn. I looked out the window and
thought, "Oh boy, another one of the HH dreams" and went back to
sleep. Turns out - there really were 6 Police, guns drawn in my
garage apprehending someone (obviously someone dangerous) that had
hidden there! LOL Kerry P.S. Way to ease the lurker fear, hey?

Gregory,

When I read the following excerpt from your post, "My symptoms are crazy I fall asleep withing seconds, cant tell dreams from reality, my memory comes and goes. I lock up and cant move and the list goes on," and then that you thought these symptoms were "different" - I wanted to be sure you knew that you are not alone. While I my not have your exact symptoms or circumstances, I fall to sleep in seconds, have a hard time telling dreams from reality, am prone to AB (automatic behavior), as for memory - I call it Some-timers disease (as opposed to All-the-timers). I have mild C, but it doesn't really feel like locking up. Please know you are not alone and that you are a valuable member of this group and of this world. Kerry

Natalie or Greg <stpierre473@...

After reading alot of these posts I realize its almost like or we do have different forms of narcolepsy.

* * I agree, but I'm not sure if there have been different forms of narcolepsy identified. I think the symptoms and severity of them are probably as unique as each individual.

I lock up and cant move and the list goes on.

* * This is something I've never experienced; I'm one without cataplexy but it sounds like that's what might be going on. Hopefully, others on the list who have cataplexy will expand on that.

I felt alone depressed and that I was no longer usefull to my wife or daughter. I was to the point of thinking they were better of with the $250,000.00. For those wondering that is what a dead soldier is worth.

* * I thought I was alone in my battle with depression. I have also felt that my family would be better off if I were gone. I hope you know that YOU are what's important to your wife and daughter, not money. Are you able to talk with your wife and is she understanding about your illness? I apologize for my poor memory; I remember some of your struggles. I have been living with this for nine years and I keep holding on because I have hope that one of these tomorrows will be the day that something finally works to help me get restful sleep and be able to stay awake during the day.
~Chris.

Hello everyone,
I at first thought also I was to old for nacolepsy. Kept thinking it
was sleep apnia or somthing else that I may have came down with. Not
until recently have I even come to realizing I actually have
narcolepsy and its not going away. No matter how much I deny it or
try to forget it. Its here how I got I wish I knew but everytime I
ask I never get reasons. I keep getting told that its not a well
studied field. Even when I spent almost 3 days at the sleep lab they
didnt really have the answers to all my questions. They just gave me
papers about narcolepsy that didnt really say anything. After
reading alot of these posts I realize its almost like or we do have
different forms of narcolepsy. And does seem some people here feel as
if they dont have a certain sympton that another person has they are
just making it up. Well I know I'm new here but I would like to say
it sucks. Not the group but the narcolepsy. My symptoms are crazy I
fall asleep withing seconds, cant tell dreams from reality, my
memory comes and goes. I lock up and cant move and the list goes
on. But Im not any worse or better then the rest of you. I just
have different symptoms. I dont ask for pitty I ask for support.
Because a little before I found the group I had no input from anyone
else with narcolepsy. I felt alone depressed and that I was no
longer usefull to my wife or daughter. I was to the point of
thinking they were better of with the $250,000.00. For those
wondering that is what a dead soldier is worth. So I really
appreciate all the input from everyone both positive and negative.
Gregory

This is a perfect example of how the group can be so helpful! By sharing our experiences, the word spreads and we can all benefit. It's just too bad that helpful words don't spread as fast as gossip.

Melanie, you are a wonderful person! It's refreshing to see how eager you are to learn about Harvey's illness and help him however you can. Your understanding is a great benefit for him, too. We should all be so lucky!

~Chris.

zilla77 <hoy@...

Any advice would be welcome, how do all of you manage to work and manage N? I know that stress is a trigger and hope that after a few weeks her job is less stessfull. But on the other hand I wonder if she had really bitten off more than she can chew.
~~ I am one who can't work and manage narcolepsy; I was removed from work twice at a manufacturing plant because I can't stay awake during the day and when I am awake I'm usually not very alert so it wasn't safe for me to continue. My job is protected if I can ever return because I'm a union member but my employer won't allow me to work on a restricted hour (part-time) schedule.

I hope your daughter will pay extra-close attention to herself over the next few weeks; if her symptoms become more severe it may be that she can't continue working full-time. Before I was diagnosed I kept pushing myself to try to keep up my normal schedule with my husband, two young boys, work, etc. and ended up in the hospital. Considering her profession, it probably isn't easy for her to take half a day off on a bad day.

If she does start to get worse, can she postpone her continuing education? I know that teaching is not a "9 to 5" job; a lot of things (grading, planning assignments, etc.) are done on their own time and going to her night class and studying are added pressures.

I wish her luck and hope this helps somewhat.

~Chris in Iowa.

Hi guys,
Just thought I'd share what I've been learning about Harvey, thanks to someone from this list who's been in private contact with me. I had mentioned earlier about Harvey having these flu episodes where he would end up on the floor unable to get up or to speak clearly. When it was ascertained that Harvey had the shivers but no fever, then the probability that Harvey was experiencing cataplexy became much greater. If I understand right, the flu, that is, the vomiting and having the runs, may have been the trigger but was NOT the cause of the cataplexy.
There was another episode in Harvey's life where he was going through a very stressful time in his life just as he and his first wife were preparing to separate. In that case, he found himself unable to walk and he had to pull himself along the floor to reach the couch. Harvey claimed that his legs went numb but after talking with this other person, we determined that it was NOT numbness but paralysis which strongly indicated another cataplexic attack.
Another instance was where Harvey fell and bumped his head on the kitchen counter. He couldn't remember how it happened and he didn't remember bumping his head on the counter. It was suggested that this was probably cataplexy.
I was told that these episodes were violent cataplexic attacks. Wow! Hmm!
I am very interested in learning more about some of the more "subtle" signs of cataplexy and about the different coping techniques that some of you may have developed over the years. I can understand Sue (was it Sue?) being in shock when her daughter was in an accident but can't help feeling that it was necessary for her to not move if she has narcolepsy. I think that in times of intense or extreme emotions or shock, that being still might be a coping technique. I could be wrong but based on my observations of Harvey over the years, I've noticed that he will stop whatever he's doing or walk away from any unpleasant situations anytime he feels threatened. For example, if I start yelling at him while he's driving, he'll pull over and refuse to budge until I promise I'll be quiet, LOL! (I hate it when he does this!) I don't know if any of this makes sense but I sure have been thinking a lot about the idiosyncrasies of the guy I married!
Melanie

I'm sorry to read about your troubles with your husband; some people simply can't comprehend what life for us is like. As a matter of fact, even those of us who share the diagnosis of narcolepsy don't share all of the same symptoms and the degree of severity varies from person to person, just like any other illness. Does your husband wear glasses, by chance? If so, tell him to take them off and make his eyes focus correctly!! That's no more ridiculous than others telling PWN to force themselves to stay awake (or any other advice that's given).

It's great that you could rearrange your work schedule to be home more. I would love to find a decent work-at-home position so I could be productive when my body says I can, rather than when someone else decides I should. Taking care of yourself and your children are your top priorities and it's too bad that your husband can't be more supportive of you; even healthy people need support from loved ones.

Best of luck to you,

~Chris in Iowa.

javacat02 <lizbilleci@...

Well, now that I know I have N, my husband has decided that I am
definitely not a person to be taken seriously, and one that somehow
deserves to be punished for the trouble my N has caused HIM. Yes, you
read it correctly. He's as healthy as a horse, by the way. Before
this, he was just treating my like a hypochondriac, despite the fact
that I had a rigorous work schedule and 3 children to take care of.
Now he's acting like he has to shoulder soooo much more financial
burden because I changed my work schedule to accommodate my N and my 3
children by working 3 days at home.
I asked him to leave because it just seemed as though he were trying
to hurt me by intentionally saying mean things that hit my most
sensitive spots (and as a PWN, they are very sensitive as you know!).
It hurts to find out that the love of your life (or so you thought)
has rejected you because of N and the fact that it requires some
acceptance of limitations and adjustments. Can anyone relate to this
situation? I'm feeling sad, yet liberated from the insidious verbal
and emotional abuse that was ruining my self-esteem and health.
However, I am not complaining--I am grateful for the diagnosis and
feel like I can handle whatever comes my way much more easily. :)
Javacat
"Keep your dreams alive!"

Hi to all,
My daughter is 22, just started her first 'real' job as a teacher in
an inner city school. At this point she is wondering how she can
continue to work and deal with her N.
She has no chance to nap during the day and in addition must go to
night school to work on continuing certification.
The schedule has her worn out and the school year has just started.
But I don't know how to advise her, I know that some of what she may
be feeling is the stress of moving far from home, few new friends,
new job etc. that most new college grads would experience.
She is thinking of quiting this new job because she can not see how
she can make this work for her.
Any advice would be welcome, how do all of you manage to work and
manage N? I know that stress is a trigger and hope that after a few
weeks her job is less stessfull. But on the other hand I wonder if
she had really bitten off more than she can chew.

that is good to hear about how long you have been taking meds
regarding the tolerance something i worry about. do you take any drug
holidays? where you are not on any meds for a period of time? I used
to hate those weeks but now i'm more accepting. the longer you deal
with it the more you learn and the better it gets. well it's not that
it gets better but i think you'll know what i mean. do you increase
dosage year after year? mikey

Well, now that I know I have N, my husband has decided that I am
definitely not a person to be taken seriously, and one that somehow
deserves to be punished for the trouble my N has caused HIM. Yes, you
read it correctly. He's as healthy as a horse, by the way. Before
this, he was just treating my like a hypochondriac, despite the fact
that I had a rigorous work schedule and 3 children to take care of.
Now he's acting like he has to shoulder soooo much more financial
burden because I changed my work schedule to accommodate my N and my 3
children by working 3 days at home.
I asked him to leave because it just seemed as though he were trying
to hurt me by intentionally saying mean things that hit my most
sensitive spots (and as a PWN, they are very sensitive as you know!).
It hurts to find out that the love of your life (or so you thought)
has rejected you because of N and the fact that it requires some
acceptance of limitations and adjustments. Can anyone relate to this
situation? I'm feeling sad, yet liberated from the insidious verbal
and emotional abuse that was ruining my self-esteem and health.
However, I am not complaining--I am grateful for the diagnosis and
feel like I can handle whatever comes my way much more easily. :)
Javacat
"Keep your dreams alive!"

No wonder you feel like a slug, Mollie, Look at the downer drugs you are taking--the anafranil and the neurotin. (Neurotin IS NOT acceptable for treating cataplexy. Unless you have some sort of other disorder which causes pain, ask yourself and your doc why you are taking the neurontin.) I have repeatedly said on this list that EDS in narcolepsy is treated first with the most appropriate medication and in the proper strength--to the level of comfort. That requires trial and erroring. While trying to determine the best EDS control, a PWN should not be taking any kind of cataplexy control meds nor meds for depression (Depression in N is natural occuring about the time of diagnosis. It does not need to be treated. It IS NOT clinical depression. It will fade in time. DEAL WITH IT!). Otherwise, how can you possibly determine what the level of comfort is? When the level of comfort is reached with the most appropriate EDS medication, then, and only then, should C meds be
added to control C.

You can learn to live with the C until you get the EDS under control. I DID and you can do it too.

Because there is NO TRAINING WHATSOEVER in medical schools about narcolepsy and very little about sleep apnea, most docs do not know the appropriate way to treat narcolepsy. Board Certified Sleep Disorder Specialists are very knowledgeable, but most PWN aren't treated by such a doc. Therefore it is up to the individual narcoleptic to use common sense.

I personally avoid everything of a downer nature. Perhaps that is why I am awake, and aware, and why I haven't developed a tolerance to my EDS meds after 34 years of taking 'em.

This is not a criticism of you, Mollie, but of the medical pros who treat your narcolepsy.
Nancy

okay i just figured out my problem after reading the last post. my
annual neurological appt. is tues. i went through this last month
because it was changed but last month i was in a not a foul mood,
well close but not aggressive i think and it took a few days of being
in that not quite nameable mode till i realized the appt. was coming
up. anyway last year he had me in tears and misery, really crying,
which is not normal for me at the dr.s, cynical is better, anyway the
point is my neuro of fifteen years is retiring and not that he's been
an easy ride, last year we drove from his office to my internist do
find out what was wrong with the doctor because it was wrong,
eventually talked about with my internist and other than a few
enlightening things about neurologists in general, all agreed (my
husband was with me in the neuro's office) that it was probably time
for him to retire and look now. I'd rather go through it just the
same as last year to not have to think of finding another. oh man, i
am bummed now. with the exception of the last visit we had done well
together, and while he wan't the ideal doc i wasn't the ideal
patient. my big doctor tip--ask if he'she has ever lost a
malpractice suit. I used to ask if they had ever been sued for
malpractice until some info from one of them. i'm fading here and
losing my train of thought. so gotta go sleep mikey

I had a bad doctors appointment a few days ago. She took me off provigil because she thought something else would work better. I admit I was still tired on provigil but I was managing. I am now taking 18mg of concerta and feeling like a slug. I cant wake up and whenever I am hunched over desperately fighting to stay awake. She also doubled my 50 mg of Anafranil. I am also on 600 mg of Neurotin both of which make me sleepy. Its been two days with the concerta and if any of you could tell me your experience with the drug it would really help me out. I dont know what I would do with out you guys. Also I am supposed to start spending more of my day outside, using the sun as a stimulant. Has that helped out any of you? Thanks so much.
Mollie

I like your joke. Sorry about the attack. Don't be so hard on yourself. We all have angry days. And this is a place where you can be yourself because we really do often know how you feel.

About the memory thing - it's a huge problem for me. I started noticing it in college - the order in which I did things got really weird. For example, I'd remember that I had to pick up something from one building then take it to class and I'd end up in the classroom asking about the paper and then in the other building looking for my class. I would say that the "foggy head" feeling definitely affects my memory. Luckily, I've developed a sense of humor about it (as I think a lot of us have) and it helps me cope.

I again want to say how much this email list means to me and how every post has made me think.

Thanks,

Melinda

i'm sorry chris if you took my post as an attack but reading yours
gave me one -- of cataplexy and i'm not quite back up to speed. and
the next i just read, i woke up and that just somehow was misread by
me i suppose and i know that waking up angry is somehow part of the N
and i may be from new york but really i don't have an attitude and
now that i want to respond i am really not up to it. that's the first
C attack in a long time and i can't even remember (isn't that ironic)
having one when sitting. sleep attacks yest not the C. anyway please
accept my apology and instead of going baack and forth i think i'll
take a tip from lupe and give you a joke instead.
Question: what's the difference between a doctor and god?
Answer: god dosn't think he's a doctor?
friends?
okay i am still curious about the memory thing. I as a general rule
have more of a hard time deciding whether it was real or not, events
that is. some things dod this day i'm not sure of. all i know is
this was the most helpful thing i'd found and the only place i was
sure there were people that understood. First time i could say what
was going on with me and ahave someone reply "i know exactly how you
feel" more or less. maybe i need to go back to just dealing with all
of it on my own two feet for a while. again, sincere apologies for
any attitude displayed . man cataplexy while reading that--it's the
pits.

sleepysewer <cupnsaucer@...

how can it be too late?

~ ~ There is a Statute of Limitations for filing almost any kind of suit.

Rich & Michael Deike <cupnsaucer@...

chris in iowa, a lot of excellent advice there but some of your message kind
of irked me. what i'm curious about, however, is your statement that most of
us forget what was just said. Is this true of the majority of PWN.

~ ~ I should have stated that differently. If you don't have the "brain fog" that comes with excessive daytime sleepiness and a nighttime sleep disorder, count your blessings! How many people - healthy or not - can recall a conversation verbatim, even immediately after the conversation is finished? The whole point there was accurate documentation. He said/she said usually won't hold up in a court of law if there is no paperwork to back it up.

I certainly don't have short term amnesia. Instead i find i have an
incredible memory going very far back and can recall details that others
might not be able to so i'm just wanting to hear from others what they
think.

~ ~ Using the term amnesia is a bit drastic, I think. With EDS there is often a loss of concentration resulting in the inability to remember a lot of things. I, too, have "an incredible memory going very far back and can recall details that others might not be able to", but that was before I got sick, too. Usually people remember the things that were important to them; that's why we don't recall the same things.

and why oh forget it i'm not going to get into what is starting to
really annoy me in your message it's not ---- it's just not going to get me
going right now or at least it won't if i stop here. mikey in ca

~ ~ What the hell - you've already attacked me so you might as well finish. I certainly had no intention of annoying anyone!! I thought we were here to help one another and be supportive - that's why I included as much information as I could while still trying to be brief, and that is the same reason I made the offer of a private response if he so wished.

Although I responded to your other post, I will do so again. You questioned why I got screwed if the group I mentioned was so great. It's really very simple: I didn't find the group until it was too late to recover the benefits I had earned. Statute of limitations had passed but I didn't learn that until I had already done a ton of research. That group is monitored. Every post is read by a group moderator so that the discussions stay ONLY on the topic at hand - problems with long-term disability companies and Social Security Disability - and a post such as yours would never have been passed on to the group as it was written. (And, NO, I am not a moderator!)

One more thing about memory: Although we all have been diagnosed with the same illness - narcolepsy - we will not ever have all of the same symptoms and the symptoms that we do share will vary from person to person, just like any other illness.

In the future, if I say something that really "irks" or "annoys" you, I would appreciate it if you would simply post your questions about it to the group and send your complaints to me privately so we can discuss and settle it privately. I don't think a personal attack was necessary.

~Chris.

how can it be too late?

Dear Greg,

According to your reported treatment by the military physicians, it would appear that they did not conduct any standard sleep studies on you. This would be similar to the manner in which I was diagnosed in 1965---a mere interview. Now that said, the Air Force Psychiatrists were correct in their diagnosis in my case.

In your situation, I would be concerned regarding a number of things that you report. Age 30 is relatively old to develop narcolepsy. The majority of narcoleptics develop the condition during adolescence. Also, some of the problems of sleep apnea are similar to those of narcolepsy although it is possible to have both conditions as I do. Thus, I would repeat my admonition regarding getting in touch with a knowledgable sleep specialist. It is important to your treatment to have your condition accurately diagnosed.

Hello,
First I would like to thank everyone for there feedback. I See a lot
of you questioned why a 0% disability rating. Well the main reason
for that or at least as I have been told is due to that the army
doesn't recognize Narcolepsy. If you are diagnosed with it you are
put into a category with excuse my spelling gran mile seizures. Ok I
realize now after reading and talking to doctors that having
narcolepsy is having a type of seizure but are we expected to fit the
same criteria. According to the paper I was shown I had to have min.
of 3 major seizures a week. Well I do have that according to
civilian neurologists along with all the signs of again excuse the
spelling cataplexy. But since I am not having the type of seizure
they want I'm out of luck.
But I don't feel so bad off now. Today I found out about a few
soldiers who developed disorders illnesses whatever they may be that
are fatal. And the army is throwing them out like yesterdays garbage
with nothing also.
Gregory

Hello Gregory,
This is Melanie. I just wanted to say that I've had to depend quite a lot on Harvey to do things for me cuz I couldn't drive a car or do a lot of my own shopping. In truth, Harvey's not been able to work the past 3 years since we moved to Arizona. If it hadn't been for my disability pension and SSDI checks coming in, we'd be in financial straits ourselves. At this time we're not receiving any help or services from anyone even though a lot of things get left undone. We have five children between us with one son age 11 remaining at home. We are seriously considering making another major cross-country move to the Pacific Northwest where the climate is milder, not too hot, not too cold, all depends on whether we can sell our house and 6+ acres of land. To answer one of your questions, YES, life as a narcoleptic does go on, with or without you! Set your goals and your priorities and achieve them one at a time and eventually you'll see a life full of accomplishments! You're
very fortunate in a way to have a wife with a disability, not that I wish it, but her life experiences would have taught her to be a more compassionate person and to be more accepting of other people's disabilities. Although I felt somewhat discouraged and depressed over learning of the possibility of Harvey having narcolepsy and wondered how we were ever going to function as a normal family, I've finally made peace with our situation and I've been able to give Harvey the support that he needs. I've learned over the years that there is so much help and services that are out there and that there are all kinds of adaptive aids and devices which can be used to help us live a "normal" life. (I admit, I'm not sure if it's harder for a narcoleptic to get the help and services they need.) For me and Harvey, the biggest issue is communication. I can't hear. He doesn't always talk clearly. I sign. He has difficulty and is somewhat reluctant to do even basic signs. What do we do? We
send emails to each other. We use an FM system with a microphone, transmitter and receiver to allow us to have "normal" discussions. We even tapped Morse codes on each other's bodies at one time to communicate but that became a little tedious! What I'm saying is, don't give up. Fight to live and fight to have the best quality life you can have. You and your family deserve no less than your best! Harvey had also considered a military career and did well in basic training but he had trouble staying on his feet after long marches. He was given a medical discharge from the army for "flat feet" but I've wondered if there wasn't more to it than that. Anyhow, find out what works for you and your wife and have a great life! And if I'm not mistaken, there might be some good lawyers out there who specialize in disability cases. Perhaps someone on this list could give you a referral. Best wishes, tell yourself that you're worth it!
Hugs, Melanie

Greg,

Please email me privately; I have the name of another e-group that gives great advice on disability and Social Security. I'm sure things are different considering you are dealing with the military, but the responses I've read so far are right on target - consult an attorney who specializes in disability insurance issues. If you haven't done so already, apply for Social Security Disability. Expect to be denied; then appeal and be denied again; then you should go in front of a judge for a decision. That's just the way it is, and attorneys who deal with Social Security Disability will handle your case free of charge until you are approved; then they receive a percentage of your back-due benefits, and it's nothing close to the 30-40% that attorneys usually get.

Also, start documenting everything! Have copies of your sleep study, the doctor's summary, the letter from the military that said you were "unfit for duty" and the one which denied you being disabled. (That in itself is ridiculous, but it's what those of us with "invisible" illnesses have to face all of the time.) Also, if you have any telephone conversations concerning this, either immediately write down the date, time, and as much of the conversation as you can OR state that you will not discuss the issue over the phone; everything must be done in writing. (This is probably the best way since a lot of us with narcolepsy can't remember much of what was just said.)

This might seem paranoid to you, but take it from one who was screwed out of her long-term disability insurance... Do what you can to get what you earned!!!

~Chris in Iowa.

Hi Gregory,
This is Harvey. I found your letter quite interesting. My wife, Melanie, has Usher Syndrome causing deafblindness and I may have Narcolepsy. I go for sleep tests in about 11 days. It has been very difficult, Greg, to lead a normal life. My first marriage failed, I think mostly due to my former wife's inability to to cope with her own health problems. Maybe in part, also because of my problems. We had been married about 12 years before a separation and a total of 15 years before a divorce came. She was later to be diagnosed as having MS.
It has been much better with my present wife, Melanie. The sleepy times still exist and maybe even more so in this hot, dry Arizona weather. Melanie has become more supportive as she understands more about my condition and she fully believes that I have Narcolepsy. I seem to be going through a stagnant stage waiting to be tested and to get the test results. The sleeping disorder has greatly affected my life, but it has not prevented me from having a full life. And there are many out there ready to help you in this difficult time. I really would consider a good lawyer, because maybe you have not been treated fairly. With the support of your mate, I think it can go well for you. Your concerns are very real and I urge you to take the initiative in getting whatever help or support you need. I wish you the best.... HAB

hi sue,
I wanted to fill you in on my cataplexy episodes. I tend to know I am going
to go down immediately on two types of occassions. I have it at other times
but the prime factors for me are pain--the type of pain you have when you
hit your funny bone or stub your toe pretty good. i can tolerate pain at
the dentist say or a backache won't bring it on only the unexpected i would
have to call it. the other is anger when i will become pissed off for lack
of a better phrase and my temper just flares. normallly i'm very laid back
and have worked at that but every once in a while someone or something gets
it to burn and that sends me to a couch if not the floor before i even know
it. i really worked hard at identifyng other times it would come and
figured out ways to make those times easier or do necessary things a
different way. I always used to worry at the grocery store that i would
have an episode at the checkout stand in public by myself. It took some
time but eventually i had a system in place that made it tolerable. that's
not to say i didn't leave carts of food in line without me. After a few
changes in markets i worked it out pretty well. It's still an uncomfortable
time for me. my brother has it whenever he sees a policeman at the door. i
think that goes back to his teen years having parties while my parents were
away. anyway was wondering how your visit to sleep dr went? mikey

Hi Gregory. I'm so sorry to hear that you have been found unfit for duty. I have a son who has been in the Air Force for 13 yrs and I can't imagine how hard it would be on his family if he were to suddenly be diagnosed with N.
While I don't have the answers you are looking for, I feel someone on this list will be able to give you advise. Would you please tell us why you were given 0% disability? Seems to me you would certainly be given disability payments since you were diagnosed and then found unable to do the work assigned to you. Knowing that you have been treated in such a manner doesn't make me feel very good about the Army. It isn't as if you had just inlisted for the first time. You have given your life to serve. But you know all of this. Sorry for rambling.
I'm sure everyone else would like to know why you were not given disability. As a civilian, you can apply for Social Security Disability.
Marilyn
waiting for fall in the
Louisiana Swamps

Hi I'm new to this group and have read some of the posts. There are
alot of questions and different ways to deal with narcolepsy that are
posted. Though I read a lot of them I still have problems that no
body ever seems to have answers for.
Im a 30 yr old male in the US Army that was diagnosed with narcolepsy
in Nov. of 2002. I thought how bad could it be take a few pills and
everything would be fine. But was I ever wrong as time has gone by I
noticed something at times it seems to get better but then it gets
worse. Not only did i realize I have to deal with a disorder that
has taken part of my life away but my family suffers too. See I have
a wonderful wife who tries to support me though at the same time she
suffers from C.P. also there is my 18 mos. old daughter. They both
wait for me everyday to come home so I can play with my daughter and
talk to my wife but it never fails I sit down and within minutes I
have either fallen asleep or have gone into some sort of trance not
being able to move. Even if I can stay physically awake mentally im
not.
Ok enough of my home life I've been in the service now for 10 years
and through the years I've enjoyed my job for the most part. Now I
have been found unfit for duty which I understand. Barely being able
to stay awake and coherent I can't really defend or perform my duties.
Well they sent my medical records to medical review and become
official I'm unfit for duty. They also gave me 0% disability
rating. Ok so here I am trying to find a job to support my family,
trying to control my narcolepsy and wondering if we will be living on
the streets.
I realize alot of you think Im just whining and complaining. But
what I need more then anything else is to know that there is life
with narcolepsy.
Thank you
Gregory

Sue,
I am sorry about your daughter's accident. I am also sorry you are
having a rough time right now. When I read your post, I thought
about my own "numbness" in extremeties and any times that I have been
rendered "out" by C. My reaction - the intensity of my C varies
depending on: my physical state at the time (healthy? worn-down?),
the emotional intensity (small surge? overflow?), you get the idea.
It makes perfect sense to me that you would have to "sit a spell" in
the circumstance you described. Also, is it possible that your C has
worsened since the Bee Sting? I'll keep my fingers crossed for you
today. Good luck. Kerry

Hi all!
I am having a slight disagreement with my Dr.'s. I have a past history of
strokes so I know what they feel like. For the past year or so I have been
experiencing a strange sort of numbness in my extremities. Even severe pain
in my fingers and toes. My most worrisome experience was a few weeks ago,
my 8 year old daughter was involved in a significant accident with a young
neighbor. A 6 year old boy. His mom and I were giving a block party and we
had rented a Big water slide for the kids. Our kids were "testing" it before
the guests were due to arrive and they hit into each other. I was at my
house when this happened and they called my husband and I to get right over
there. When we arrived I figured a fat lip maybe and a bump on his head.
Well when I saw my daughters 2 front teeth imbedded in his skull I simply
froze. I looked in my daughters mouth and saw her perfect adult teeth were
cracked in 1./2 and I had to sit. I was frozen there. My Mom came and I
really could not talk. She said I was gray.
I was embarrassed by my reaction. I know the party guests must have thought
I was a horrible Mom. I have a background in medicine and normally will
respond with the correct action for the given situation. Even if it involve
a family member, I nursed my Dad during his Parkinson's until he passed. I
was extremely responsible when my (Same) daughter was stung by a bee and
almost died due to an allergic reaction we did not know she had. She was
swelled up beyond believe and gasping for air when we got her to the
hospital, but I didn't break down until she was release later than night. I
never "froze'. Was it shock, stroke or cataplexy?
I get this when the darn doorbell rings, my leg will give out. Or when my
daughter has a bad day at school and I get a note I lose feeling in an arm
or something like that. Not totally dead like when I had the strokes but
dead feeling? If that makes any sense?
Anyway my question is, is freezing like that cataplexy? If some of you
would not mind sharing some of your cataplexy experiences I would certainly
appreciate it. I see my Sleep Dr. in the AM and I will be bring my newest
MRI/MRA results proving I am not having strokes. But I would like to be
more informed on cataplexy.
Thanks so much!
Sue :)

i have heard it mentioned several times about someone named Emo and blue badges. whats all this about??
thanks
Mollie

No pumps, exercises or pills.
Made especially for lazy guys.
Sit around and make your member larger.
(seriously, check it out)
http://www.opejsn.com
This email was sent because you joined our group.
If you do not wish to recieve any emails, unsubscribe by sending an email to

I'm curious too..who created this poll and for what purpose? I won't take part in a poll without knowing first, who created it and what will be done with the information. That's my two cents worth.
Marilyn

Everyone,
Please read the discussion from the 2000 archives which I have posted
here.
I have been posting on this list since message 78 in March 1999
I'm 57 years old and I do know a thing or two about narcolepsy
There will be no more discussion on this list about this topic.
Those who do not like this list are not bound by any rules to stay here.
The polls are a personal affront to me, a personal with narcolepsy, by
I'm ROTFLOMA if any of you think you are going to shut my mouth on this
list.
Nancy

Considering that Narcolepsy has approximately a 1 in 2000 rate of incidence, we are in a distinct minority and need all the help in understanding our situations that we can get. Today, mass media possess the ability to both promote negative stereotypes as well as educate the general public regarding the realities of narcolepsy. It certainly behooves PWN to cooperate with anyone genuinely interested in seeking the truth about this disease.

Each of us can easily recall the sense of loneliness we felt as the only one with Narcolepsy. Those individuals most significant in our lives--parents, siblings, teachers, etc.,--the ones that we relied on for support, comfort, etc. came to the conclusion that we are malinguerers, on drugs, lazy, etc. Oh, how we needed and would have welcomed just one person who would seek out the facts of our condition and believe in us.

That said, it is also understandable that Nancy as well as others of us may have been betrayed by reporters in the past. However, we do know and need to keep in mind that Narcolepsy itself amplifies any innate feelings of paranoia that we may have. While other website resources such as Narcolepsy Network (http://www.narcolepsynetwork.org), Stanford University Center for Narcolepsy (http://www-med.stanford.edu/school/Psychiatry/narcolepsy/), etc. can better provide factual data on Narcolepsy, only by monitoring resources such as this group can researchers gain insight into the feelings and struggles of PWN. As a fairly regular participant in this group, I do not see anyone revealing information that might prove detrimental to one's well being.

Nancy is a most valued contributor to this group usually providing most knowledgable insights. However, neither she nor I, nor anyone else speaks for the entire group.

[INLINE] Thanks! Kerry, very well stated! I'm in full agreement with you. Kay
Kerry Ray <back2mack@...

Sue,
I want to thank you for taking the time to share your feelings on OUR list. Sharing information, knowledge, and/or experience, is a personal decision. I whole-heartedly agree there isn't a better-suited educator on the impact of N than a PWN! As a PWN, one of my objectives is to do my part in abolishing all the misinformation and stereo-typing attached to N. I am committed to achieving this - I want our disease to be understood.

As it relates to this group, I get frustrated, too. As a newly dx'ed PWN, I came here seeking knowledge, understanding and a place to be free from the interrogations and sometimes-hurtful comments of friends, family, co-workers, etc. I was welcomed and treated with respect. The support and encourgement I received (not just here) has helped me to face the challenges of getting medicated (appropriately), returning to work, etc. This is why I continue to participate. Call it a debt of gratitude or a personal sense of responsibility - but I want to be sure that other PWN are provided with an open, safe and respectful environment, that helps them in there journey toward health.

Sue, I beg you to participate regularly. If the N list is without people who participate and are vocal about their feelings on these subjects, then people like you and I may not get the information and/or support we so desparately need to live with N successfully.

Finally, for all of you N-Listers thinking, "this isn't the N-Info List." I know everyone does not share my sentiments and may not welcome students, media, and the like - and I respect that. Still, when an "outsider" or a "Atypical PWN" approaches us, it is NOT acceptable to be rude or hostile. A polite re-direction or a private email response is appropriate.

Sue,
I want to thank you for taking the time to share your feelings on OUR list. Sharing information, knowledge, and/or experience, is a personal decision. I whole-heartedly agree there isn't a better-suited educator on the impact of N than a PWN! As a PWN, one of my objectives is to do my part in abolishing all the misinformation and stereo-typing attached to N. I am committed to achieving this - I want our disease to be understood.

As it relates to this group, I get frustrated, too. As a newly dx'ed PWN, I came here seeking knowledge, understanding and a place to be free from the interrogations and sometimes-hurtful comments of friends, family, co-workers, etc. I was welcomed and treated with respect. The support and encouragement I received (not just here) has helped me to face the challenges of getting medicated (appropriately), returning to work, etc. This is why I continue to participate. Call it a debt of gratitude or a personal sense of responsibility - but I want to be sure that other PWN are provided with an open, safe and respectful environment, that helps them in there journey toward health.

Sue, I beg you to participate regularly. If the N list is without people who participate and are vocal about their feelings on these subjects, then people like you and I may not get the information and/or support we so desperately need to live with N successfully.

Finally, for all of you N-Listers thinking, "this isn't the N-Info List." I know everyone does not share my sentiments and may not welcome students, media, and the like - and I respect that. Still, when an "outsider" or a "Atypical PWN" approaches us, it is NOT acceptable to be rude or hostile. A polite re-direction or a private email response is appropriate. I'd venture to say this isn't even my opinion - THIS IS A FACT!

Hi,
Why you choose this topic?
Leo.

Hi, I am a college student writing an article about how support
groups like this one help those who have rare diseases. If you would
like to e-mail me and tell me how this support group helps you please
fell free to do so. My e-mail address is ucmnews2@... also, if
you have ever heard of www.globalhealthnetwork.org or the
International Rare Disease Support Network please include how that
specifically helped you.
Thank you,
Magan

Sandi,

Wonderful! It sounds like Provigil agrees with you. I didn't know about the Provigil possibly enhancing the effects of anti-depressants; I may have to give it a try again - third time's a charm, right? I am also taking Effexor but am not sure it's necessary these days as my docs and I are sure that my depression is secondary to the sleep problems.

I hope things continue to go well for you!

~Chris.

I don't think Provigil has addictive ingredients, just like today's anti-depressants aren't truly addictive like older stimulants are.

I recently read an article about people being "addicted" to anti-depressants because when they stop taking them, they have withdrawal effects. Of course they do!! But it ISN'T because they were addicted; it's because their body is adjusting to the change. That's why it's always stated to consult your doctor before ceasing your medication; most anti-depressants need to be tapered off. I say this with confidence because I've gone off anti-depressants before with very little effect on me, but I also recently had a problem with drinking and when I stopped, the difference was astounding! That was withdrawal - UGH.

In my humble opinion, saying a person is addicted to certain anti-depressants is like saying a diabetic is addicted to insulin. How ridiculus is that? You're simply replacing something in your body that it needs to function normally; addiction (whether to pills, nicotine, alcohol, or anything else) is entirely different.

~Chris.

Lupineita Deville <lupineita@...

With the wave through the media about people being addicted to benzodiazepines (like temazepam and valium) I've heard that it can cause neurological damage. When people addicted to the benzos come off them they get really bad withdrawel effects.

Does anyone know if an ex benzo addict can have their feelings of physical withdrawel brought back on by using Provigil???

Ta

Interesting incident this morning. My new routine on Provigil is to
set alarm for 6am, have Provigil and glass of water at bedside so
when the alarm goes off I can easily take it. Since I don't HAVE to
get up until 7am, the plan is to take it and go back to sleep until
7, and by then it should have started working. So, I vaguely
remember the alarm going off at 6, reaching over and taking it. My
alarm is set to go off again at 6:45 (so I can do the snooze thing a
couple of times). I woke up at 7:30 shocked to find that I had
turned my alarm off (not hitting the snooze as I normally do...and I
double checked to make sure that the second alarm was indeed set and
it was). I don't even remember the second alarm. Other than that, I
still seem to be awake and alert on day 3 of taking Provigil.
The stomach and nausea seems to be fading, with only a little
jitteryness (is that a word?) here and there. My appetite is down a
little, but not gone (darn...that would've been a good side-effect
for me). I find that I need (want) to drink more water, which is a
good thing. No desire at all for soft drinks or coffee, which I was
mainly drinking for the caffeine anyhow. Water seems to be the only
thing that tastes good drink-wise, which is probably a good thing.
So far, no complaints. I fall asleep just fine. It seems to wear
off around 7pm.
In a routine visit with my psychiatrist yesterday I mentioned that I
had started taking Provigil and why. (he needed to be aware of new
medications as it relates to what he has me on...Effexor...and how it
affects my depression. My sleep dr advised me to discuss it with
him). He seemed pleased and said that Provigil has actually been
shown to work well with antidepressants in enhancing their effects.
Great news! He reinforced everything my sleep dr said. He said if
the headaches keep up after a week to see my GP, but that they should
go away.

Nancy,

I've forgotten what qualifications you have and where you acquired your knowlege and expertise

on all the health and medical matters, you seem to have.

Would you remind me, please?

Thanks

Hi Mikey and other PWN,
Thank you for your input.
<hi nancy,
about two years ago i had surgery that removed a salivary gland with a
huge stone in it. i was under longer than anticipated but had no problems
at all other than being extremely nervous
when being wheeled out of recovery (which i have no memories of)

To what do you attribute being nervous? Was it due to the anesthetic? Or was it something else?
<we passed by the waiting room where my husband was and they say i sat straight up said "there he is" and then boom right back down
LOL! I can readily visualize the scene from your description. It is so typical of PWN. I know I shout, sing, curse, speak in Spanish in my dreams. I probably wouldn't remember being so vocal except that hearing my own voice wakes me up. Your experience does indicate that even while recovering from anesthetics, PWN are clear thinking--you recognized your husband.
<and i really didn't wake up again until about 18 hours later.
I've heard similar reports from other PWN. Since I've been told I'll have surgery one day and be dismissed the next, a long induced snooze wouldn't be expected by the docs. I've already talked to the surgeon and told him that I have narcolepsy. During my consultation with the anesthesiologist, I'm going to make sure that he understands what narcolepsy is and trust that he will know how to handle it. I really don't have any choice. I haven't been able to find info on the internet in my search of med journals. I'd like to have some kind of published medical info to give to the anesthesiologist, but there isn't any info to be had.
<I felt great and needed no pain medication. of course i didn't take my
N meds either.
Why didn't you take you N meds? Were you told not to take 'em? Or did you choose not to take 'em?
I went home and that's when i just couldn't get things back
together. I was basically on the couch awake from meds but not
totally alert for almost six months. I actually went to get another opinion
regarding N but later realized it was just the surgery that took it's
toll on me. hope this helps. mikey

Thank you for sharing this with me, Mikey, If you could have your druthers, what would your recommendation be to the sleep docs or other docs--as a group-- about anesthetics for PWN?

It looks like we PWN have a serious issue to deal with. As though we don't already have serious issues to deal with!

Years ago, before I met any other PWN and heard their experiences, I was concerned about the general anesthetic during surgery. The painful episode which put me in the hospital for two days a couple of week ago is the third time since 1996 I've sought help in the ER for the pain. This time my white cell count was up so I was put in the hospital to get the infection under control. Twice I've delayed the surgery. Now the gall bladder has to come out.
In June, my oral surgeon wanted to reform my upper gums so that I won't have any trouble with my dentures, but he wanted me to undergo the general anesthetic. I chose not to have the gums reformed because of my concern of the anesthetic.

I wonder how PWN as a group could make our experiences and concerns heard. Anyone have any ideas?

Nancy

Hello Bob and other PWN,
<snip
then placed me in the hospital, put me under a general anesthetic, and put a tube in the side of my head, under the ear, to drain the infection. I had no trouble at all with the anesthetic.

I'm glad to hear that you had no trouble with the anesthetic. That is comforting to me. I had no idea that you've had this ongoing problem.

<The tumors are getting large now; especially the left side. I really need to have them removed. There is a risk, however, that I will lose muscle control in my face and the ability of my mouth to water. I am unwilling to lose those abilities.
Yikes! That is a real dilemma, Bob. I'm glad you rejected the surgery. I would miss seeing your smile. Perhaps a new surgical technique will be developed soon which will cut the risk. Let's hope so.
<Besides that, even though I had no problem with the anesthetic in the earlier operation, I am still scared of it because of my Narcolepsy and Sleep Apnea.

I would like to know what makes you fearful since you've already had a positive experience.

Do you remember hearing Roger (in Springfield) tell about the horrible experience he had after surgery because of the anesthetic? He was out for three days and it caused his family to believe he was in a coma and didn't know whether or not he would pull out of it? He said he felt really rough for a long time afterward. He had informed the docs about his narcolepsy prior to surgery. I think that all PWN are concerned. The topic comes up at all support group meetings and comes up on discussion lists. What is your take on the reasons PWN are fearful of general anesthetics?

You bet, I'm concerned and always have been, but you know me, I cross my bridges when I come to 'em. Well, I'm about to cross the bridge and have been searching for medical journal articles on anesthetics and sleep disorders. I found ONE article on sleep apnea and a response in a forum about anesthetics and the narcoleptic dog colony at Stanford.

Could it be that the docs really don't know about narcolepsy and anesthetics?

Based on the horror stories we've heard at support group meetings and on discussion lists, I believe our fears are well founded. And so far, my search has confirmed my suspicions.

Bob, if you or any other PWN comes across the info on the net, I would certainly appreciate having a link. I'll have a consultation with my anesthesiologist on the 2nd of September. We will have an understanding we can both live with. I don't want to be out for three days. That's for sure!

Thanks for your input. Bob. Although surgery has risks, I'm sure I'll recover quickly, but in the event something unforeseen occurs which carries me to the other side, I'll leave all my money to you, my friend! LOL!
Nancy

hi nancy,
about two years ago i had surgery that removed a salivary gland with a huge
stone in it. i was under longer than anticipated but had no problems at all
other than being extremely nervous. when being wheeled out of recovery
(which i have no memories of) we passed by the waiting room where my husband
was and they say i sat straight up said "there he is" and then boom right
back down and i really didn't wake up again until about 18 hours later. I
felt great and needed no pain medication. of course i didn't take my N meds
either. I went home and that's when i just couldn't get things back
together. I was basically on the couch awake from meds but not totally
alert for almost six months. I actually went to get another opinion
regarding N but later realized it was just the surgery that took it's toll
on me. hope this helps. mikey

Got a strange question if anyone has heard of anything like this...

With the wave through the media about people being addicted to benzodiazepines (like temazepam and valium) I've heard that it can cause neurological damage. When people addicted to the benzos come off them they get really bad withdrawel effects.

Does anyone know if an ex benzo addict can have their feelings of physical withdrawel brought back on by using Provigil???

Ta

I am recently diagnosed with Narcolepsy.

1. What is N and what is C, please?

My insurance does not want to pay for Provigil; the VA refuses to provide it. 2. Are there any substitutes? 3. How can the VA be made to provide it?

3. Can narcolepsy be caused, or precipitated, or worsened, by other prescriptions? 4. Or by other medical conditions?

Thanks

Frank Hills

I've been notified that the link I posted in my previous message doesn't work. This one should work. http://enigma.elfrad.org/

Nancy

Hello Everyone,

As you all know, EDS in narcolepsy is sleepiness, not fatigue. In recent months lots of people without narcolepsy as well as many PWN complain about fatigue. I too have been feeling fatigued in the last several months even though a previously underlying hypothyroidism was identified years ago and is being adequately treated. I've talked with my doc and blood tests reveal that I don't need more thyroid supplements. I'm alert and awake, but fatigued. So what is causing my fatigue? It occured to me that it might be environmental. Here's a link http://www.enigma.elfrad.org On the website, click on August 14, 2003 That was the date of the blackout in NYC. Read about Delta waves and let me know what you think.

It's difficult for me to determine if I was fatigued or not when the blackout occured because the evening before, I had been released from the hospital after an unexpected two-day stay. Though I was pain free again, I wasn't feeling my best. Contrary to the opinions of some, the rocks aren't in my head, but in my gall bladder. It isn't anything that I already didn't know, but I don't want to experience the pain again. Laparoscopic surgery has been scheduled. I've been most fortunate in not having surgery which requires a general anesthetic before. I would appreciate hearing from other PWN about their experiences with anesthetic during and after surgery.

Nancy

Ok fellow PWNs & N-listers,
This might take a while, but I just can't seem to shake it. About a
month ago a newly dx'ed PWN joined us briefly. He introduced himself
as an N without C and made reference to his psychiatrist. He
received immediate replies telling him that he could NOT be a PWN
without C and that he needed to switch to a neurologist. As I
followed the threads that were directed at/to him, I felt angry. I
emailed him privately to apologize for the lack of sensitivity some
of our group had shown and to let him know that ALL of us do not
share their sentiments. Ocassionally I get an update from him, but he
hasn't posted since. While I love to get the updates, every time I
see his email, I feel that anger all over again (Not a good thing,
since I do have C). I think about what my life would be like right
now without all of the support and encouragement I have received
here. I think of how alone I would feel if anyone had treated me
that way (I wouldn't have come back either). Luckily, this wasn't my
experience. I save the responses to some of my first posts and read
them when things are goin' kinda rough. They remind me how wonderful
it is to have a place to come where I can get validation,
information, encouragement and support. I guess that's why I had to
post this - to remind anyone who may be quick to judge a newcomer
that they are fragile. Of course, we should always be honest and not
hide the often-awful truths we face as PWN, we should always use care
in communicating our own opinions of same. I guess that about sums
it up, now maybe I will be able to let this go. If anyone is
interested in what I told the new guy, some excerps follow:
I am sorry to say that I think you have been a victim to N-listers
with good intentions twice - once when fellow N-listers said you
could not have N without C and once when you were advised by members
of our group to switch from seeing a psychiatrist to a neorologist.
I am very sorry this happened to you. I am equally infuriated by
members of the group (who have all been where you are - a newly dx'ed
patient seeking support) not treating you with more care. I hope you
know that is not the way all of us conduct ourselves and I hope that
you will continue to participate in the group.
I think it is safe to say there is a lot of concern among PWNs about
N being viewed as a "mental illness." It is unfortunate, but seems
that physical conditions are often viewed in a "better light" by
employers, friends, family, etc. I have found this to be true in my
own experience. The important thing to remember is that in terms of
the type of professional you choose - it is about you! Personally,
I'd far rather see a psychiatrist with whom I have trust and
confidence than a neorologist with whom I do not (or vice versa). I
guess my point is to be true to yourself.
You asked about seeing a psychiatrist vs. a neurologist. My OPINION
is: if you feel comfortable with your psychiatrist and are confident
that he/she is up-to-date on N and its treatment, then seeing a
psychiatrist is fine - particulary, since he/she can prescribe the
necessary meds to treat your N. Of course, the same holds true for
any doctor, neurologist or not.
I want you to know that seeing how you were treated has fueled my
commitment to showing new N-listers that there is support and
compassion available here. Take care! Kerry

From one southerner to another...I hear the frustration in your post. I feel
like a hypochondriac too and tend to downplay so many other things as a result.
(I was dx cancer three years ago so I would think the people around me would
understand my concerns)
I don't take Xyprem so I can't offer any insight on that. I have IH and just
started on Provigil today. The jury is still out on how it's gonna work out. I
am awake and alert though. One day at a time.
You aren't walking alone.
Sandi (Alabama)

I had to reply on the dosages of provigil because not everything is engraved in stone and true for everyone. My doctor did the clinical trials on provigil and had me try it at 400mg twice a day because it stopping working and I stopped it and decided to give it a try again. It did not work but I did try it for a few months.

He also did the xyrem clinical and is planning on have me go up to 12 ml on xyrem 2x a night if necessary to see if it will help. I am at 9 ml now 2x a night with no luck so far.

This is not intended as medical advice but info to take a look at things. I mentioned to my doctor the thing about the provigil level and he said that is not always true.

If what you are experiencing are Sleep Paralysis Episodes... which by the way feel very evil to me also... you have nothing to be ashamed of to tell any doctor.. i too felt funny ever telling anyone cause I didnt want to admit that I felt all of the evil presences... but my sleep doctor mentioned SP and then asked me to describe what i felt and then confirmed that it was SP, a HUGE relief from thinking it was all evil.. my sis said she had some episodes but as faras we know no other symptoms of N and I am not sure if you can just have SP without having N or some other sleep related disorder.... yes, go to a sleep doctor, my doc gave me some medicine to take to help with the SP... I just havent had enough money to keep getting the prescriptions... Pam

Hi again! First of all, let me finally say THANKS to ALL" who
responded with support, info. and advice about me just starting on
Xyrem and found out my doc was on vacation. It is very difficult to
reply back individually as I would like...several reasons: 1.TIME-
takes me forever to get my thoughts together, it's difficult to
decide just what to write-to condense it to include the necessary
info. without writing a book. 2.FAMILY...(at home: husband, two
teenage daughters; distance: 100 miles away, 81 year old mother with
numberous health problems and I'm an only child). 3. FAMILY SUPPORT?
understanding? interested?...maybe my imagination...but I feel they
think I'm just a hyperchondriac...I also have fibromyalgia (which my
doc believes will get better when [and if?---I'm still trying to have
hope] we get the narcolepsy under control), hypertension (which my
other doc is trying to help me get under control---could it be all
the meds I'm taking and a little stress? :)---but don't ask me I'm
just the patient), a few others---humm--maybe I am a hyperchondriac?
Anyway, I'm TRYING TO LEARN not to say too much around them or be on
the computer when they're around. 4. LACK OF COMPUTER KNOWLEDGE...I'm
still learning and sometimes I have to wait until someone is around
to help me. WELL THAT'S ENOUGH BORING REASONS/EXCUSES! IF I ever
finish THIS POST, it will probably be a while before I post again
because it is taking me a VERY, VERY long time to write this. I
really don't mean to bore you, but I really have THIS NEED LATELY to
associate with someone who can relate. I just pray that God will help
me get to the point that I'll be an encouragment to others. I'm not
glad that any of you have narcolepsy, but as some of you have said it
is nice to know you're not alone with all these weird symptoms.
XYREM: As you know from a previous message, I just started Xyrem
Friday week ago (Aug.15), started having some adverse reactions and
became frustrated when I found out that my doctor is on vacation. I
phoned The Xyrem Success Program pharmacist and he said it sounds
like my dose needs adjusting. Problem is there's not anyone in the
office who can authorize it. DON'T WORRY I'm NOT messing around with
this medicine!!! I,m just sticking it out until he gets
back...Sept.4th or 8th. (My dose is 4.5mL 2Xnight...Last week---
slept through alarm for 2nd dose one night, then 1 or 2 nights
because of family schedule, time did not permit enough time to get in
2nd dose...this may have contributed to some of the symptoms,
although I'm inclined to think sleeping through the alarm would be an
indication that the dose needed adjusting, since I had been
automatically waking up before the alarm went off. SIDE
EFFECTS/ADVERSE REACTIONS/SYMPTOMS:They seem to hope around---come
and go--- I have NOT had them all everyday---THANK GOD!!!---tired,
sleepy, mood swings (irritable, crying for nothing,anger,down feeling-
-I hate the word depression, etc.),thinking process messed up more
than usual, confusion, mind was continuously going blank,more
forgetful than usual, night time halucinations different from before
(only 1 night--for which I am thankful), leg cramps (and Valencia,
I'm still taking MagOx--which seemed to be controllng the them before
I started the Xyrem--any connection?), headaches, dizziness, fibro
aches, even had one slight catalexy episode one night in bed just
before going to sleep.HUMM-----some of this sounds kind of like
untreated NARCOLEPSY to me...and I'm still taking Adderall and
Provigil twice a day. WELL GOOD PWNs I'm EXTREMELY EXHAUSTED as it
has taken me most of the day to write this and I KNOW YOU ARE VERY
TIRED FROM READING...HOPE YOU DIDN'T ASLEEP TOO MANY TIMES WHILE
READING IT...IF YOU WERE EVEN ABLE TO FINISH IT. Please overlook any
typos, I tried to go back and correct most of them, but am out of
energy now. THANKS A MILLION FOR LETTING ME UNLOAN ON YA'LL...now you
know I'm from the SOUTH. HUGZZZ to all PWNs! Kay

These sleep paralysis episodes used to scare me too... Now if I can I try to "go back" to sleep and then I wake normally... As far as sleeping in that odd sensation during a nap.... I too, can lay on the couch sleeping and usually wake and answer when called upon.. sometimes I have even done this playing cards.. asleep before it is my turn again, and then right back to sleep... of course this can happen when I first wake up in the morning too... I can answer the phone, which is the only thing besides physical touch that wakes me in the morning,, but then if I dont get right up, I can fall right back to sleep... sometimes even before I hang up the phone and usually right back to the same dream...

I used to take Adderall a couple of years ago which prob masked this problem for
years. It used to really help me get thru the day, even at the relatively low
dose I was taking (5mg 2x daily...was supposed to take 10mg 1x daily but
splitting it up worked best for me). I just started on it today so we'll have
to see how it works out and determine if I need a second dose on school days. I
do feel somewhat more awake and alert today but wonder in the back of my mind is
it because I WANT to feel that way. Will have to just wait and see at the end
of the week and look back and see how much of a difference it made. I know I
haven't yawned at all today and it's 10:30 am. Normally I would be sucking down
coffee deep in a fog, but I seem to be thinking pretty clearly. A little bit of
an upset stomach/nausea and zero appetite. I don't typically eat breakfast, but
instead eat a snack mid-morning. I do feel like I NEED to eat something, just
no desire to. I hope this works out for me. I am soooo ready to claim my life
back. I sleep so much, I feel like Rip Van Winkle. I see my dr again in three
weeks so by then I should know by then if it's helping (he did say to call and
come in sooner if I need to...great, understanding Dr).
Sandi
============================================================
From: Christi Merboth <christik126@...
Date: 2003/08/26 Tue AM 10:02:48 EDT

Hi Leonid,Thank you for the links...Im sure this is what I experience
or something very close and after learning more about hallucinations
Im sure I have these to a degree also(I always thought hallucinations
were only seen with your eyes open)I knew what I experienced was not
dreaming It felt demonic...Who can say that to someone and not expect
them to think your insane.I am really afraid to tell my family doctor
things like this...I told him about not being able to wake up and he
just said ...it feels like that because your tired all the time.
Should I ask him to see a sleep doctor?Do I really need one? could
they help me at all? These are the kind of questions that go through
my mind.Well thank you again for the information...I have a lot to
sort through.
Thanks,Francine

Hi Sandi,Thanks for your support.I wish my naps were 3o mins and not
3 hours too.A 3 or 4 hour nap wouldn't be bad(putting aside the fact
who wants to sleep their life away) If it was a restful sleep without
a constant struggle to wake out of it and feeling like your druged.I
don't know how you have coped dealing with this so long.
Francine