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I find it quite interesting that with my narcolepsy I can process detail work
for an employer-- planning of events, typing documents, meeting deadlines
--with no real problem as long as I keep myself organized. However, I can
watch a 2 hour movie, and 3 days later I remember that I watched it and
whether or not I liked it, but I have absolutely no recollection of what the
movie was about. This happens all of the time. On the lighter side, it
doesn't take much to keep me entertained. Just show me the same movie over
and over again. I have watched movies 4 or 5 times before I retain any
details about it. Do others experience the same type of "selective" memory
loss.

ello, while talking to my pharmacy yesterday about getting my supply of
Adderall was informed that the company/plant that manufactures this and
another stim burned to the ground. This might make getting next months
supply questionable?
I did not verify this info.
Wanda
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love the photo's jasper...woohoo! lol i hope to have more coming. hopefully you
can see a better shot of me and jim. take care angela

"WIth me, I get the feeling of blows to the back of the head and to my
face right when some particularly violent hallucinations and s.p
episodes begin. Is there a chance that you had a violent "narc-out" (as
I call them) which may have cause you to spasm and crack your own ribs
while hallucinating an attack?"
Response:
I have tried to think of every "reasonable" explanation as to how these
injuries happened. I've had so many questions from doctors, but none of them
have really even attempted to try to explain it. They have all admitted that
they just don't know what happened. It's interesting that Joe describes the
blows to the back of the head and face before his hallucinations begin. Maybe
there is a connection here to cataplexy.

Does anyone know of any alternatives to using stimulants to control the
symptoms of Narcolepsy?
Carole

Thank you for the information. Where did you buy "immun26"? In healthfood
stores? I would like to try it. Thank you so much.

Remember: If you would like to post a message to the group you need to email
it to:
narcolepsy@egroups.com
If you click on the "reply" button, it will send the message only to the
person who posted the message that you are replying to.
Thank you,
Carole

"Hey, I have those mini-schiz-outs...Is that a cataplectic precursor? Often,
when I am felling a certain way I feel a little (snap! in my head, like before
a sleep paralysis, but I just jump, or twitch. Is that pre-cataplectic or
even actually cataplectic?"
Response:
Think these mini-schiz-outs are known as micro-sleeps. Not sure about their
name but I do know how they make me feel. Like I'm somewhere between being
totally here and somewhere else. The little "snap" that I feel is like there
is a pressure of some kind inside my head that pulls me backward, and then
it's as if I'm off to the side seeing myself. It usually only lasts a few
seconds and then it's over except for leaving me feeling weak and a little
slow at speech. Thanks for your input.

Hi,
Mr. Barrows suggested I post my story on here. I had rosacea for
for quite awile up until about 7 mos ago. Last Apr I went to see a
naturopath and he suggested I try something called immun26 since he
believes its caused by a wacky immune system. I read about the
treatment for awhile and then decided to try it in June. After a
couple weeks I started to notice a little difference with my face not
being so broken out. It steadily improved after that over the next
month or so and about two months after starting the treatment it was
completely gone. Since then it hasn't come back. I'm delighted and try
to share my experience with others with this problem.
sincerely
jen

I know what you mean. You never know what you may have done while you were in
automatic behavior and that is really scary sometimes. A lot of times people
talk to me about something that I did and I have no recollection of doing it.
Now that I am on the dexedrine it isnt as bad, but it still happens a lot more
often than I would like.

Note:

problems with this symptom. Once, I had left the house, went to a strangers
house, and bought a dog. I do not remember doing this. I woke up from a nap
and saw a dog sitting in my living room. This was a pretty large dog and I
was a little scared since I had no idea where it had come from. I called my
husband at work and told him that there was a strange dog in our house. He
informed me that I had gone and bought th
recollection of. I believe I was functioning under automatic behavior since I
did not experience a concussion or anything else that would explain it. I am
wondering if anyone else has had problems like this with automatic behavior.
YES YES YES....GOd! I hate it., I am in the process of sorting out all
of my memories and trying to find out what was real and what wasn't. It
got me kicked out of several bands. I once played the same riff during
a show for five minutes strait, after all of the band had finished and
was staring at me in amazement. It gies you the reputation of a moron,
but I'd love to see how they would deal with reality splintering off
into its own tangent every five minutes...PRobably not too well...

WG,<br

Hi WG,<br
those of you who don't know me yet, and would like to
know more, visit my
website.<br
br
months, and I hope that this club goes from strength to
strength!<br

Is there info about medicins as XTC, Energie Drinks, Amphetamines or
something?

Three years ago I was standing in my bedroom getting ready to go to work, when
I suddenly felt a blow to my back, which felt like someone hitting me. I was
knocked forward and rolled onto the bed. The pain was so severe that I
couldn't move for a few minutes (it seemed), but as soon as I could move I
raised my arms in an effort to defend myself from another attack. I was so
sure that someone had hit me, but there was no one there. In this quick
minute, I had fractured 2 vertebra, 4 ribs and dislocated my collar bone. I
have had MRIs, Bone Scans, tons of x-rays and have never been given any
explanation as to what happened. Doctors including physiatrists,
accupuncturists, physical therapists, chiropractors, orthopedic and others
have all been stumped by this occurence. Since then I have been diagnosed
with Narcolepsy/Cataplexy and the question has been raised as to a possible
connection. Has anyone else experienced anything similar to this? It would
really be good to have some idea what may have taken place.

One of my symptoms of Narcolepsy is Automatic Behavior. I have had a lot of
problems with this symptom. Once, I had left the house, went to a strangers
house, and bought a dog. I do not remember doing this. I woke up from a nap and
saw a dog sitting in my living room. This was a pretty large dog and I was a
little scared since I had no idea where it had come from. I called my husband
at work and told him that there was a strange dog in our house. He informed me
that I had gone and bought the dog and that he and a friend of his had come by
the house and I cooked supper for them. I did not remember any of this
happening.
Also, last year there is a period of 4 months straight that I have no
recollection of. I believe I was functioning under automatic behavior since I
did not experience a concussion or anything else that would explain it. I am
wondering if anyone else has had problems like this with automatic behavior.
-----
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hello i just wanted to know if anyone out there
has been in a divorce situation being paralized! i
would like to know how the law worked for you. and what
was the out come of it all.<br

Dear Carole
I was diagnosed with narcolepsy/cataplexy 16 months ago, after many years of
misdiagnosis by many doctors. In retrospect, I realize that I have had
symptoms since I was quite young, am 47 now. But, since my symptoms of
excessive daytime sleepiness, vivid dreams and hallucinations presented
themselves gradually, I had no idea that I was not "normal". Then 5 years ago
I began having what appeared to be mini seizures, brief periods of time when I
felt that there was somehow a conflict between my conscious and nonconscious
mind. After awhile the periods began to last longer until finally I found
myself in a hospital corrider, collapsing to the floor, realizing that I was
falling, but was unable to move. I lay on the floor surrounded by doctors and
nurses, could hear every word, see everything directly in front of my eyes,
all my thoughts were clear, but my body was completely paralyzed. I have
been diagnosed and treated for years for depression, optical migraines, stress
and anxiety disorder, to list a few. Finally, after 5 years of treatment with
3 different neurologists, CT scans, MRIs, EEGs, etc. it was suggested that I
go thru the Regional Sleep Center at Memorial Hospital in Chattanooga, TN for
assessment. During the overnight MSLT and naps the following day, I was
diagnosed with narcolepsy/cataplexy. I was given Vivactil, which I was
allergic to, and later put on Norpramine for treatment of cataplexy. I still
have hallucinations, sleep paralysis, and cataplectic episodes, but they are
not as extreme as before and don't occur as often. The good news about all of
this is that now when the really weird things start to happen I know what it
is and that keeps it from being so frightening. Good luck on your new site.

i would like to welcome jasper clark to the club!
for all that know him he is a wonderful man to talk
to! please feel free to chat with jasper clark or
myself. all are welcome.. help make this club a success!
thank you jasper for joining.<br

I was diagnosed with narcolepsy 18 months ago. Mine started when I was having
tremors one night while visiting my husband at work. He works at an ambulance
service so he decided after 2 hours of these tremors to take me by ambulance to
the emergency room. They first thought that I was having seizures, but after 4
days of testing they couldn't find anything and they diagnosed me with a
psychiatric problem. They thought that I was faking the seizures and that I
needed to be institutionalized. I was very angry because I had never shown any
symptoms of mental problems or psychological problems so I refused to be
institutionalized. I made an appointment to see a neurologist and he sent me to
Memphis to the Epilepsy Center. I was there for 4 days and again, there was no
medical diagnosis. When I went back to my neurologist, he sent me to have a
sleep study done. He said he didnt think that anything would show up, but he
didnt know what else to do. After my sleep study, I was diagnosed with
narcolepsy. I am now on Dexedrine. I suffer from sleep paralysis, hypnagogic
hallucinations, and most of all...excessive daytime sleepiness. Dealing with
Narcolepsy is something I have to deal with one day at a time. I would love to
hear other's stories about their narcolepsy as well as any other questions or
comments.
-----
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hi my name is angel (short for angela ) i created
this club for all the people i know that need a place
to go and chat, seek help or share their experiences
handling their lives with sci. i belong to several groups
and when i sign in i never see anyone in the chat
rooms. my room will be opened all the time for people
who want to chat with others! so please bear with me
for i'm new at this. please feel free to write to me.
i will try to help as best as i can! i would like
this room to be different than the others, so please
tell all your friends about my room. it's not just for
sci people but for family and friends. i'm involved
with a wonderful man who is paralized. i'm doing this
to get to know how his life is being in a
wheelchair. i want to share my experiences with all who are
sci. so if you have any questions ask me.<br
see you all soon!<br

Enter your vote today! A new poll has been created for the
rosacea-control group:
What prescription medication do you currently use
to control your rosacea?
o Metrogel products
o Antibiotics
o Intensity Pulsed Light Therapy
o Accutane
o other
To vote, please visit the following web page:

Hi Folks,
I've been off line for awhile and just read the entries on calcium & magnesium.
Sue makes a good point on the calcium. You can take too much of anything.
On average you can take 1,200-1,500 mg of calcium each day. It really depends on the individual 's needs at the time. However, where calcium most often becames a problem in supplemental form is when it is taken without magnesium. Calcium is very
hard to absorb when taken alone even with Vitamin D. Calcium with magnesium is best because the magnesium helps the calcium absorb more efficiently. Most calcium supplemnts are now cal/mag. Use calcium citrate if at all possible as it is more easily absorbed.
By the way, don't look at milk and cheese as good sources of calcium. We've known it for years but now there is research coming out of Harvard that seems to indicate that milk may be doing just the opposite (ie. inhibiting calcium absorption) vegetables (especially green ones), nuts, seeds etc. are much better sources.
Take care,
Rick

Hi Folks,
I just read Nancy's letter re the above. One would almost get the impression that Nancy is suggesting I've been soliciting business from PWN. How about it Nancy? Is that what you are implying?
Rick (The Troll) Tufts

Rick,
It would logically beg the question "WHY" you are on a narcolepsy
board....Narcolepsy is a rare disorder, so the chances of you as a
dietician meeting one are probably not that great, so being involved
in this board won't help you specifically in your dietician
service....So you must obviously be here to serve this board...in
whatever capacity you see your role here? I read that with the
exception of government public health nutrionalists...that there is
no profession in ontario of "Nutritionalist" (Nutritionists are not
regulated by law and people do not require any training to call
themselves "a nutritionist." see below)
I am always suspicious of people without narcolepsy that are 'so
interested'...I realise that narcolepsy is one of the holy grails of
neurology, and trust us if diet would cure this we'd all be happy
employed campers with a roaring sex life....
I am not saying that nutritional advice isn't helpful for people who
are ingorant on these areas or aren't professionals in the health
field. I think diet can play a great supportive role to the body in
general in terms of healing etc. However given the time most narcs
take for diagnosis most of us a pretty much informed about
nutrition, vitamins, etc as well as a host of related diseases we
come to find out we don't have. Half of the people on this board
through searching for their own solutions probably have as half much
medical knowledge as would take to complete most university medical
courses.
Although my first experience with a nutritionalist or more properly
dietician in Ontario right? Was that she told me I had low blood
sugar, and even after 7 years only admitted that that might be
incorrect...I didn't have low blood sugar levels or even high...
after I ommited all sugar for seven years and followed a very strict
diet pure organic - holy crap was that all expensive...as
perscribed. - with no cheating as I believed that diet could cure
what was ailing me - lol...(yes no cocacola, store birthday cakes,
candy bars... for 7 years, white bread you name it) finally I got
fed up that I wasn't seeing any results .....and bought a blood
glucose meter and took my sugar levels so often it was obscene (as
well as the sugar levels of people I knew....)Do I regret being so
strict no not really, but it didn't make me happier or more alert,
infact my symptoms were much worse during that time. I wish there
was a nice simple diet we could all follow...however narcolepsy
isn't a simple disease, and one that is barely understood by
neurologists, or any other alternative or mainstream health
professional. So if you are here to provide emmotional support and
basic nutritional knowledge without solicitating or pushing people
towards going against medical advice, then you could be helpful to
those who really don't have a clue about nutrition. But if you are
here to give psuedo medical advice or encourage people to stop
taking medication that makes them more productive and safer in their
own lives....then I think that could be dangerous.
....I think diet plays an important role in managing any disease.
But with narcolepsy it will only go so far, and can often work in
the opposite way by making people feel guilty for what they ingest
is making their disability worse. There's personal responsiblity
then there is blaming a person for being disabled.....
Shiloh
PS while looking through your posts I did notice a few things that I
think say more about your personality than anything else...
"With all due respect, I think you have to accept the fact that
doctors are not infallible and that medication deals with symptoms
of medical conditions, not their causes. The education of the
medical profession revolves around medication."
=Maybe you were not lucky enough to be accepted into medical
school...as if you had been you might know better what you claim to
speak about. It is easy to put down doctors for their
fallibility...however I think they've had more success and insight
in treating narcs than you have?
obviously:
...drugs is never going to solve your problem. Its only going to
make you worse. The answers lie in nutrition and exercise, subjects
of which the medical profession has virrtually no knowledge.
=lol. What medical school did you attend?
Okay and are you a PUBLIC HEALTH NUTRIONIST?
As from what they COD says....ah read it...
Other people may provide nutrition advice but under Ontario law only
Registered Dietitians are held accountable to the College of
Dietitians of Ontario and the public for their conduct, the quality
of their care and the nutrition services that they provide. The
public can trust that dietitians are highly qualified.
What is the difference between a dietitian & a nutritionist in
Ontario?
Nutritionists are not regulated by law and people do not require any
training to call themselves "a nutritionist." There are no mandatory
mechanisms to ensure that nutritionists are knowledgeable about
nutrition and that they practise safely and ethically. Public Health
Nutritionists, however, are an exception - they are required to have
a Masters Degree and are registered with the College of Dietitians
of Ontario.
If a member of the public has a concern regarding a dietitian,
he/she can easily contact the College of Dietitians of Ontario which
has the responsibility and power to investigate and take action. In
contrast, complaints regarding nutritionists can only be dealt with
by their employer if they are not self-employed or through a civil
action through the courts.
--
The term Nutritionist is not protected by law in all provinces so
people with different levels of training and knowledge can all
themselves a "Nutritionist". A variety of titles have been used by
unqualified people to describe their involvement in nutrition
related practice. Many use the term "registered" with a variation
of "nutrition" as a title. You should be careful to ensure that the
person is a qualified nutrition professional. You can contact
Dietitians of Canada or the Provincial regulatory body to obtain a
list of Dietitians in your area.
Funny you are not listed on the search engine for registered
qualified diet/nutrional professonals in Canada - why?
http://www.dietitians.ca/find/index.html

Note: forwarded message attached.
ue,
Two of my daughters have N ages 15 & 9. Your daughter
somewhat resembles the actions of my 9 yr old although
at this time my daughter has not diplayed the dropping
of C,but exhibits other things related to N, but you
don't necessarily have to have C in order to be dx'd
w/N. I have heard that C is a definite for dx'ing N so
I would reccommend seeing another doc whom is "board
certified" as a sleep specialist and have the sleep
tests done. N is different in children than in adults
in some ways especially the sleeping. I live in
Michigan and take my daughter to Detroit Children's
Hospital. If you need to know more you can e-mail me.
Good Luck,
Michelle

Thanks Michelle- it is so helpful to hear about other kids with N. I am holding off on the sleep study until I find the right board certified dr & lab. Meanwhile, she is a new kid on the medication. After the last few horrible months, maybe we need this little break before moving on to the next round of tests.

Sue

I was really far into debt.
Like Most I was in Financial dispair.
I could not seem to get ahead no matter how hard I tried.
Untill I found this place.
http://releasedebtn0w.4all.cc
If you are in debt they can help you out.
Check them out today I did.
This email was sent because you joined our group.
If you do not wish to recieve any emails, unsubscribe.

Anyone have any advice as to whether I should file for disability? I am going to the Dr. tomorrow... I was told by the insurance company that I must have a letter from my dr stating that I can no longer work before I can try to apply for it. I only have 6 days left at work and then I am to either resign or be fired. Once the school year is over I won't have any more insurance neither health and dental/ or disability. So if I dont file now, I wont have that coverage or option. I dont know whether my Dr will even consider writing the letter or if the school will fight this.. although they also suggested it. I work two part time jobs in addition to this one, but this is the one that paid the bills.. and prob. the highest paying job I will have.... I just don't know what to do.

JT so you don't have to file through EEOC before disability?
No. The EEOC complaint is based strictly on discrimination.

I just didn't know if you could do it after you filed disability. They are forcing me to quit, be fired, or in my opinion file disability. (I may go through EEOC but I think I will stick with one thing at a time).
I went to the Doctor today (after begging them to squeeze me in when I once again overslept and missed my appt.) and he filled out the paperwork for disability through my employer's insurance. Do I now have to file for SSI through social security or can I wait on that?
Also, anyone know if I get some type of medical insurance while waiting for a decision on the disability? I lose mine Friday.. and he deemed me unable to return to work as of today.. so I will not be there the last week of school. I do get my sick days as long as I have enough, (which I have more than enough). I wonder, since school is over in 5 days if I get the rest of my sick days or I have to forfeit them? ("rhetorical" ?)
Through the school's long term disability, I will get 66 2/3% of my monthly salary. Which the woman said is about what I bring home after taxes.. so it shouldn't be a difficult change. Can you continue to work part time while on disability? My problem is not working in general, it is getting there. If my job is flexible than I am able to work. I just didn't know how much you can make on top of the disability, without losing it.
My doctor filled out some paperwork from the insurance company
and stated that until there were some new advances / breakthroughs
in the field of sleep medicine, I was totally and permanently disabled.
My Doctor stated that I am not able to be awake enough to get to work on time and that there are no known accommodations to be made and that it is a lifelong condition with no known cure. I will tell him that statement "until there were some new advances / breakthroughs in the field of sleep medicine, I was totally and permanently disabled" in case he is asked to clarify...

thanks for your response and for anyone else's advice....

Damn, I wish I had seen this sooner! Pam, DO NOT RESIGN YOUR POSITION!! If you do that, you screw yourself out of your disability before you even get started. I still have my seniority (thanks to the UAW) even though I haven't been able to work for 8 1/2 years. Unfortunately, my employer did a fantastic job of working it so that I don't receive my long term disability benefits and I will not resign my position until I have one last chance to either return to work or file a grievance.
Pam <mybuggaboos@...

Anyone have any advice as to whether I should file for disability? I am going to the Dr. tomorrow... I was told by the insurance company that I must have a letter from my dr stating that I can no longer work before I can try to apply for it. I only have 6 days left at work and then I am to either resign or be fired. Once the school year is over I won't have any more insurance neither health and dental/ or disability. So if I dont file now, I wont have that coverage or option. I dont know whether my Dr will even consider writing the letter or if the school will fight this.. although they also suggested it. I work two part time jobs in addition to this one, but this is the one that paid the bills.. and prob. the highest paying job I will have.... I just don't know what to do.

Go to the Social Security website at http://www.ssa.gov then click on the
disability section. You have to be considered not able to be "gainfully
employed" for 5 months (now, this is new) before you are even considered
disabled! the gainful employed means able to make around $800 a month (it
changed Jan 1) Your phone interview starts the ball rolling, be sure to gather
ALL the medical records you can as far back as possible. They say they will, but
NEVER TRUST them with your papers..... and ALWAYS make copies of EVERYTHING you
send in. Answer the questions in terms of how you function on your WORSE DAY
EVER! I don't know if there is a listing yet for N., but when I got SSDI years
ago, my lawyer asked the ALJ to use epilesy as the basis for desiding my case.
Even tho very different..... both disorders a person is unconscious during the
day... in our case... we are sleeping! I will share more later if you want, but
gotta run, looks like my day is starting sooner than I want. Oh and also, you
don't get Medicare for TWO YEARS (& 5 months) after your disability date... and
who knows if Medicare will be worth it by then. But if your income is low
enough after getting SSDI, you can file for Medicaid. Go check out the Official
Social Security Website all the answers are there.
Kat
Also Pam look up "Reasonable Accommodation" in a search engine. If you can
prove you have a need for a reasonable accommodation, they can't turn you down
for ANY reason except if they can prove it would be a $$ hardship. I have
gotten it several times, you just have to stand your ground. If you want write
me personally.

Is there an over the counter pill that can be recommended for anxiety?
I was reading about Valerien Root, but it sounds like more of a sedative--
and mostly for people who can't sleep at night. So, w/ having N, I'm
afraid such an herb won't work for me in a positive way. I am on meds for
N and depression/anxiety, but was just wondering if anyone had any
otc suggestions.
Thanks.
Amber

Hi Amber,
B-Complex vitamins, Vitamin C, and Calcium/Magnesiun will all help with anxiety.
If you are up to it, exercise can also be a very big help.
Rick Tufts

Amber,
I have to ask you a question. Why would you ask for help and advice on ways to relax when you know perfectly well you have no intention of even considering it? Unless of course it fits your predetermined notion that medication is the answer to all the world's health problems. At minimum, it is the easiest. So Xanax "rocks your world". Well, rock on.
Rick

Rick, I just LOVE it when you post your trash on this list. Every time you post, you show your real colors and that you have your own agenda. You don't have narcolepsy, you aren't knowledgeable about narcolepsy. YOU DON'T BELONG ON THIS LIST. Keep on posting Troll, your day is acomin.'

Hello -
First off, Rick you are mistaken in your response to the "Xanax rocks
my world" post. You snapped at poor Amber, who asked the initial
question, as I think you mistook her for the other person who posted
about Xanax. A case of mistaken identity, apparently.
This list is soooo dysfunctional it is amazing! At least it is
entertaining. Amber, I wanted to address your question about over-
the-counter remedies for anxiety. I, too, suffer from anxiety and
depression as well as narcolepsy. I find that the Provigil makes my
anxiety a bit more intense, so it is a real double-edged situation
trying to balance these meds.
What is most important, though, is to remember that if you are
already taking prescription medication for anxiety and depression,
certain herbal remedies can interact with these medications and cause
serious harm, even death. Especially to be avoided is anything
containing St. John's Wort while taking prescription antidepressants
like Paxil or Zoloft, etc. Any antidepressant should not be taken
concurrently with St. John's Wort. Also, apparently there is some
evidence that Xanax should not be taken with vitamin C, specifically
via grapefruit. So, there you have it. The bottom line is to talk
to your physician prior to taking any and all over-the-counter herbs
or vitamins.
Be well,
Peggy

I don't have a problem with someone who isn't certified giving their
opinion person to person, but if you aren't qualified then don't try
to pass yourself off as a true alternative medical professional. I
think most people can accept that even the untrained can pick up
some useful information, crap we can all read and wow - do...
But to fraudulently pass yourself off as a true medical professional
and the adive you give as falling under all the guidlines that a
true alternative professional does is dangerous when it doesn't.....
I am not a doctor but I play one on the narcolepsy board....lol.
And Americans may have freedom of speech but we don't in Canada.
Actually you can't say whatever you want here if its false,
fraudulent, unfounded, discriminatory...you can't pass yourself off
as being something you aren't.
And since there are obviously people on here who believe he's got
some level of expertise but isn't that like the old medicine sales
men back in the 1800s promising cures for everything!
And they always made good money.
If it quacks like a duck.
Shiloh
Hey but maybe there's a new field for us all to go into we can all
call ourselves nutritionalists now. I am a nutrionalist you're a
nutritionalist!

My name is Dawn and I was diagnosed with narcolepsy 3 weeks ago. I
am glad to get in touch with others who have the same situation and
any information is welcome.
6 years ago I had my first cataplexy episode when I became quite
scared. I remember it well and thought it was really weird. Over
the years it became more frequent and the threshold was much lower.
Then, 4 1/2 years ago after a bout of mono, I had extreme daytime
fatigue that was so intense, it was hard to describe. At the same
time, I had horrific nighttime sleep. I would sleep and then wake
up refreshed but two hours later, had to sleep again. I went to the
cleveland clinic and they said it wasn't chronic fatigue, but that
they didn't know what it was.
Due to the sleep/fatigue issue, I went on a variety of
antidepressents prescribed by my psychiatrist. I've tried many and
in fact I got muscle pain on some such as Zoloft. After I had muscle
pain, I was diagnosed with Fibromyalgia. However, some meds did not
give me mucle pain such as Effexor and Elavil.
Most recently I was on a high dose of Trazadone. It was for
nighttime sleep, and it helped. However, in Sept. I started dreaming
while I was awake and it was as though my dreams were taking over my
awake time. I also noticed the cataplexy was intense, breaking
through all the time, I was dropping things, I fell. I had dreams
that were so intense and vivid, I was confusing them with reality.
I had automatic behavior that was downright freaky. I had intense
vertigo and a high pitched beep in my ears.
I sought out a sleep neurologist who suspected I had narcolepsy. I
agreed in what I had read in a book on sleep. It sounded like me.
She took me off the trazadone and I lost muscle tone quite a bit. My
body became like melted butter; all I could do was lie down.
Everything and anything would set off my cataplexy. I couldn't walk
much by myself.
I'm on straterra now; it's so-so. I still can't do much. I've read
of much better meds for cataplexy and sleep consolodation which my
doctor will try after this one.
For the past 4 1/2 years I've taught college and was able to
schedule my classes from 11-5 two days a week. The other days I
slept in and could rest and nap when needed. The two days a week
were plenty for me. I am a poet and this and my other interests kept
me busy at home the other days of the week.
I'm concerned about what I will do to earn a living. Of course right
now I just want to get better.
Any positive stories or advice out there?

Is there anyone here on social security disability
or long term disability through an insurance company?
What was your experience in applying for benefits?
How long did it take? etc.

I am currently on Social Security Disability (SSDI).
Everything I have to say pertains to my experiences with SSDI. I speak not
as a lawyer or professional, just as one who has gone through the process.
BTW, I know squat about Long Term Disability.
I applied in October of 1999, and was approved in June of 2000. From what I
hear that is quite short. Even though I was spared the stress of the
hearings, the process was a nail biter. You see, applying for SSDI was a
LAST resort. All my attempts at earning a living had failed. I had taken on
three projects in hopes that my mind would return back to the 'good old
days'. I had to return all those projects undone. I was defeated (and
broke!) when I walked into my local SSA office.
In November 1999 I had a telephone interview which I don't remember anything
about. They also sent the first of many packets for me to fill out. I waited
until the last minute and did a poor job filling those out. "What do they
want? I'm disabled!" I said.
I was denied on the first round in March of 2000. I now know that just about
everybody is denied at that stage. I suppose they plan on a certain
percentage of applicants deciding that they weren't really disabled after
all, and giving up. For me it was devastating. Not only was I dealing with
the loss of my ability to financially support myself, but there it was in
black and white, SSA does not believe me! I felt like they were accusing me
of saying, "Should I go to work today, or should I go on Social Security?" I
fought the concept that my self sustaining days had been brought to an early
end. (OK, I still fight it!) I was a computer programmer who knew how to
produce. The sky was the limit. The onset of Narcolepsy robbed me of that
ability. I went from writing complex PC programs that replaced mainframe
computers to someone who takes hours responding to an email like this.
It was at this stage that I learned some valuable lessons, which I would
like pass on to you:
1) All you are to SSA and the State agency that makes your decision is a
folder full of papers. I was doing myself harm by my short, non-descriptive
answers to their endless stream of questionnaires. What I did was photocopy
all of the forms they sent to me. Then I forced myself to work on them for a
set amount of time each day. I penciled in answers on my copies. Then I
wrote about specific episodes. If they asked me what I did all day, I gave
them a detailed diary of my last three days. When I ran out of room on the
form, I liberally 'attached additional paper as necessary'. Be SPECIFIC and
provide EXAMPLES (I even enclosed a photograph someone took of me sleeping
in the yard). Every moment that Narcolepsy let me, I worked on those forms.
I was a little worried that I'd do such a great job filling out the
paperwork that they'd think I could get a job filling out SSA forms! Then I
recopied the forms in my best handwriting. Again, be truthful and complete
and thorough.
2) The other type of paper that goes in your folder is doctor's reports. I
found out that my doctor's offices were too slow. I would call the doctor's
offices to find out when they would send in the paperwork. Then in a few
days I would check with the examiner on my case to see if they had received
the reports. When they hadn't, I was back on the phone to the doctor's
office. I was always pleasant and polite as expressing my true feelings
would have backfired. The calls were just so frequent that they HAD to send
in the forms, just to get rid of me! I found that it was ok to be blazingly
persistent as long as my tone was dripping with honey. I was the King of
Polite! "Sure, I'll wait!"
3) It is ok to occasionally check in with the examiner at the State agency
that makes the decision. Instead of asking "when will I get a decision",
offer to be helpful. Ask "Is there anything I can do to help you with my
claim? Can I explain anything? Is anything missing?" They don't seem to hear
that very often. It can't hurt to make a positive impression. Perhaps
they'll remember your pathetic voice as they stamp DENIED all over your
folder!
4) Make copies of everything you send to SSA. If(when) anything gets lost,
it will save you huge amounts of time.
5) If you are applying for SSDI, then you know that you are disabled and
can't work. In some respects, you must 'sell' this idea to complete
strangers. For example, I was depressed because of my loss of vocation and
driving. At first I was hesitant to include this depression in my claim. I
was being foolish! I'd never tell you to make up something like depression,
but if you've got it (let's face it, narcolepsy's effects can be depressing)
fully describe it. I learned that if SSA decides that the Narcolepsy alone
isn't disabling enough to qualify, they will consider other conditions for a
sort of 'big picture'. I enrolled in counseling which I still go to today,
and it doesn't hurt. Again, with those questionnaires, be thorough. It all
goes into the folder! Your situation is likly diferent.
6) Read SSA's own policy manual! It is at:
http://policy.ssa.gov/poms.nsf/poms?OpenView
How do they evaluate Narcolepsy?
http://policy.ssa.gov/poms.nsf/lnx/0424580005
How do they determine if it is severe enough to be disabling? Check out
section 11.03 of
http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adul
t.htm
Oddly, they use the criterion for petit mal seizures.
7) If they send you to one of their doctors, GO! They were a pain for me to
get to, but I felt that not going would have been a strike against me.
8) Don't give up! Check out http://www.ssa.gov/pubs/10041.html for the
appeals process. Hey, I knew a man who got SSDI because of his constant
farting problem. Hey, If Narcolepsy keeps you from earning a living, you
deserve it 100x more than the gas man did!
9) Lawyers do help. They know what SSA is looking for and make sure that
they get it. The no fee unless you win is quite an incentive! That said, I
am not sure if my lawyer helped or not. My case was decided at the
reconsideration level. All he had to do was make a few phone calls and send
in a few forms (which were typewritten, I'm sure they liked that!). I
believe that earned him $4000+. It is tempting for me to think that SSA was
quaking in their boots upon learning that I had retained legal counsel. I'll
never know if that helped them reach a faster decision or not. Perhaps other
forum members have more insight into this. I know people who went before a
Administrative Law Judge representing themselves, and won. If you have
decided to get a lawyer, I'd get them as early in the process as possible.
If you have backpay coming, their fee is capped. (At around $4000 in 2000)
In my area there are many who are happy to get on at the reconsideration
level. Keep looking!
10) If you do get SSDI, start planning to do it all over again! In 3 or 5 or
7 or whenever years you will get to go through the process all over again.
It is called a Continuing Disability Review (CDR). I successfully just went
through my first one. Some things will help. Dig out the copies of the old
questionnaires. This will help you fill out the new ones. "What was that
brilliant wording I used?" Keep going to your doctors. You will need their
documentation for your case. Fill your prescriptions. They check. You can be
totally disabled, but if you aren't taking your prescribed medicines or
other therapies they will say that you aren't helping yourself to get
better. Good-bye benefits! See
http://policy.ssa.gov/poms.nsf/36f3b2ee954f0075852568c100630558/d34757339f72
158f85256e310064c847?OpenDocument
Well, that's my experience! Sorry it went on so long. I hope I made sense.
I've been writing for almost four hours between naps. It was actually
therapeutic for me to write down some of these thoughts. (so I helped my
self, if no one else?!)
I hope that something I've written has been helpful. Feel free to ask
questions. You will find that the group is very knowledgeable.
Guy Henry
www.guyhenry.com

These URL's were truncated in my message.
I used a service to create shorter versions that should work for you.
Evaluating severity of Narcolepsy/petit mal: http://tinyurl.com/3ehgy
Not following treatment policy: http://tinyurl.com/2v3sj
Sorry,
Guy Henry
www.guyhenry.com
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What was your experience in applying for benefits?
How long did it take? etc.
I had to go on State Disability for a year before I could get SSDI and for me it was not that difficult though it is for some but it depends on how well the doctor submits his approval for disability.

Also for disability company I got that okay but I have to fight them all the time to keep it and it appears I will have problems keeping that after 4 years but I am getting some treatment that might help me to work.

If treatment helps then a person should work as they do not get much money and cannot save for retirement. I have another 11 years before I can retire and I have been on disability for over 4 years and now getting treatment for my EDS that is helping some, not enough to work but if the dose if upped I might be able to.

State disability is different for different states and in California I do not remember how long but I think it can take up to 6 weeks to get it.

Hello,
I am new to this group. I'm 23, from the UK and was diagnosed
around 9 months ago.
I take 400mg of modafinil a day and unusally, it really seems to
work for me. It has helped stopped a lot of the sleep attacks which
helps me at work, at college and driving.
However - even if I am not suffering an attack, a lot of the time I
still feel I want to sleep. When I finish work, I usually sleep for
around 2 hours each evening and feel that this is getting worst.
I'm not sure whether I thought that modafinil was the 'miracle cure'
in the beginning - but does anyone else feel that even when they're
not particularly sleepy that they still want to go to sleep?
Is this a psychological thing? i.e. I've been used to sleeping in
the day for so long, that its a habit I'm finding hard to break? Or
is this something that will always be a factor?
I would be interested to know - it can be very difficult when your
family and friends are empathysing with you, but can't help with
these kind of problems.
Hope everyone is well.

In my case the modafinil stops the sleep attacks, but I never have alot of energy. I think after working a full day it is pretty normal for a person with N to want to take a nap. but maybe you need to increase your dose of medicine. How often do you take it now?

Terri48
ailish7543 <ailisholoughlin@...

Hello,
I am new to this group. I'm 23, from the UK and was diagnosed
around 9 months ago.
I take 400mg of modafinil a day and unusally, it really seems to
work for me. It has helped stopped a lot of the sleep attacks which
helps me at work, at college and driving.
However - even if I am not suffering an attack, a lot of the time I
still feel I want to sleep. When I finish work, I usually sleep for
around 2 hours each evening and feel that this is getting worst.
I'm not sure whether I thought that modafinil was the 'miracle cure'
in the beginning - but does anyone else feel that even when they're
not particularly sleepy that they still want to go to sleep?
Is this a psychological thing? i.e. I've been used to sleeping in
the day for so long, that its a habit I'm finding hard to break? Or
is this something that will always be a factor?
I would be interested to know - it can be very difficult when your
family and friends are empathysing with you, but can't help with
these kind of problems.
Hope everyone is well.

Hi Terri
Thanks for your message.
I am 300mgs in the morning and 100mgs at lunch.
Sometimes I don't even feel sleepy or overly tired - I just want to
go to bed - maybe it's a comfort thing?
I am probably being hard on myself as I belive I want to sleep - as
opposed to actually needing it - somehow convincing myself that its
under my control.
Apart from EDS, I don't really have any of the other symptoms, apart
from a rare cataplexy attack which is normally quite mild. I don't
take any other medication for it but I am going back to my
Consultant next month and will be discussing all this with him; as I
have lost around 2 stone (28lbs) in the last 6 months.
My Consultant is very good, but he tends to be quite relaxed about
the whole thing, re-assuring me that it is mild and I can have quite
the normal life.
Despite this (!) I do feel very positive and I can do a lot of
things that I wouldn't have before - I've been able to get a lot
more involved with my sister's baby and I no longer fall asleep in
every lecture or meeting at work - it's a great confidence boost if
nothing else!

You are lucky your stationed state side. Being tired at the wrong time could get you killed. My son who just graduated from high school has N. He wanted to join the Marines,his recruiter looked into it for him and told him that they could not guarantee him getting his meds all the time so unless he could go with out them he was not eligible. So maybe you will be able to get out on a Medical Discharge. Terri 48
mgladue9 <mgladue9@...

I have been in the Air Force for 9 1/2 years and have struggled with
excessive sleepiness since 1997. I was just diagnosed 2 weeks ago
with narcolepsy. I have had a tough time in the past 2 years waking
up and making it to work on time, so much that I am considered
a "disciplinary problem". I am to the point that if they kick me
out, I wouldn't be upset because I as sick of dealing with people
that have no clue of what its like to be tired 24-7. No one here
really listens to what I have to say, let alone care about anyone
but themselves. I am stationed in Warner Robins, Georgia and would

I have been in the Air Force for 9 1/2 years and have struggled with
excessive sleepiness since 1997. I was just diagnosed 2 weeks ago
with narcolepsy. I have had a tough time in the past 2 years waking
up and making it to work on time, so much that I am considered
a "disciplinary problem". I am to the point that if they kick me
out, I wouldn't be upset because I as sick of dealing with people
that have no clue of what its like to be tired 24-7. No one here
really listens to what I have to say, let alone care about anyone
but themselves. I am stationed in Warner Robins, Georgia and would

Well you got two options:
Disability
Does your benefits provide for disability coverage?
If so apply NOW! It will offer you some job protection?
The more time you let go by the more they could say that you can
work on it,
Or fight on!
Alternatively now you know what you are dealing with, there's lots
of medications and managment strategies that can help you manage
this and alot of us do have normal successful productive lives.
Sure its more difficult. But possible.
Atleast you can take some emmotional comfort now you aren't lazy or
crazy ;)
Narcolepsy can be a very isolating disease, the chances of you
meeting a person with it are small. Compared to other diseases you
don't get much sympathy for this one, partly cause some people
believe you are lazy and could snap out of it if you wanted to or
that you are nuts and are looking for attention for an imaginary
disease. Most people won't understand and can't.
My husband is wonderfully supportive, but I can't really talk to him
about the nitty gritty of living with narc as he can't really
understand = and sympathy only goes so far :) Kinda like you can't
explain to me what being a sargent has meant to you, I can grasp the
concept but only so far..
For men I have always thought narcolepsy is harder on some levels as
women we are used to our bodies overriding us (menstration,
pregnancy) and are almost culturally taught that we aren't in
control of our bodies, emmotions (what a crock but...) For men and I
am sure especially a military man your livelyhood, esteem is wrapped
up in control, and not even being able to control your own body is a
scary scary thing.
I suggest for starters get your ass covered.
Narcolepsy scares the crap out of employeers and insurance coverage
alike (not to mention the chances of loosing liscences of
everykind...) Don't be surprised to get that suspended driver's
notice...I don't know if they do those in Georgia but you aren't
always told by your doctor. If you want to keep it you have to
convince them you know when you are sleepy.
Shiloh

Thanks for the advice, I am looking into it. I find it a little
strange that this time last year I was in Iraq, and the sleepiness
didn't seem to be an issue (I was working with the 3rd Infantry
Division--saw plenty of destruction). Maybe it was the stress and
pressure of the unstable enviornment. But now it seems to have
progressed and I have trouble staying awake at work. I am currently
taking 600 mg Provigil, 300 mg Wellbutrin, 40 mg Celexa, and 20 mg
Ritalin (the only one that really works is the Ritalin, and I still
fall asleep on it sometimes)...

I just lost my full time job due to not being able to independantly wake up anymore.. I have been called all of the same names and more... many people just think it is an excuse or made up, since they are not able to see the disease.... you may be able to get a medical discharge..like you said it isnt exactly what you want but may not be a choice anymore.... There is no miracle pill to wake you up in the morning... and until then we dont have many choices... not all of those with N have problems waking. I myself am pretty much controlled once awake (with meds of course) but the problem is the actual waking up in the first place... I have been known to sleep 17 out of 20 hours due to the phone not ringing and noone physically driving to my house to get me up.... it is EXTREMELY frustrating!!!! I am waiting for a decision on Long term disability and also unemployment... so hang in there!

I have a really hard time waking up in the morning. My wife says
that I get up and turn off my 3 alarm clocks and get back into bed,
sometimes speaking to her. I can honestly say that I have absolutely
no memory of this happening, and I end up being late for work more
times than I care to mention. Also, after waking up, I feel
disoriented and spacy for anywhere from 20 minutes to a couple of
hours, resulting in "zoning out" at inopportune times and memory
problems. I have also experienced an "awakening" later at night,
which sometimes leads to insomnia. Being in the military, we do
physical training (running, etc) first thing in the morning, and
most times I am too tired/fatigued to put any effort into getting
into any sort of shape. I have been constantly called "lazy"
and "unmotivated", and "a piece of crap NCO". I am trying everything
I can to meet AF standards, but so far my superiors are saying its
not good enough, even though I have been diagnosed with narcolepsy.
So, as you may guess, I have been in plenty of trouble in the past 2
years over this. All of this started 7 years ago with a concussion
with a 3 day amnesia, followed by 3 months of dealing with
a "cloudy" mind, non stop headaches, and the beginning of my sleep
difficulties. It has progressed steadily and was annoying but not
too bad up until about 2 years ago, when I visited the doc because I
thought it might be depression. The doc could not find a reason for
my depression and asked me about my sleep because of my syptoms, and
bingo, one year later I was diagnosed. I am to the point now that if
they kick me out, I probably wouldn't care, even though I love doing
my job and serving in the military. I feel like I am up against the
wall, since my superiors really don't believe a word I say. I need
some advice ASAP.

I am not doubting your diagnosis but I think from the concussion
connection to your symptoms have you had an MRI/cat done lately?
The concussion, 3 days of black out?
What about your meds? You might want to try waking up 2 hours
before you have to get up and taking some meds then going back to
sleep for a bit?
I am sure within the military there are other jobs you could do?
I might suggest a transfer to a different job that might require
less physical exertion, better work hours (i find nightimes are best)
but get your HR division involved show them you are motivated to
keep your job, do a good job. But if they don't think you want to
be there no diagnosis (which I am sure they just see as another
excuse) is going to help. You need to transfer under different
commanding officers (sorry if my terminology is incorrect) Remember
they have invested 7 years in your training and to turf you is a
loss for them (especially at this time).
But go speak to your HR, legal dept. Protect your rights and if you
do want out start making a plan of what you can do when you leave.
But seriously though with a brain injury you should make sure there
isn't scar tissue, swelling, mini clots or something like that.
Shiloh

Hello group, I was wondering other than the gene
connection of people with N if there have ever been any surveys that
include sex, blood type, previous illness, and nationality? I also
wondered if most people with N are night people like me? I suppose
thats because it takes me all day to wake up and feel half way
alert. Terri48

It appears that the Americans with Disabilities Act and its cousins
DO NOT APPLY to US military personnel. I have a limited ability to
stop the administrative actions that have been set in motion. Also,
I just got a call from my military doctor, requesting that I have
all of my records from the sleep clinic forwarded to him ASAP. Looks
like I am going to face a Medical Evaluation Board, which will
probably end my 9 1/2 year Air Force career. Any suggestions?

Hello Everyone,

For a couple of years I have been posting information about the use of antidepressant medications, particularly the SSRIs, for PWN. The ONLY reason a PWN should be taking any kind of antidepressant medication is to control cataplexy. (Got depression? GET UNDEPRESSED! Depression is NOT a symptom of narcolepsy!)
One of the older tricyclic antidepressants will give sufficient control of cataplexy in most PWN. However, in recent years the SSRIs (selective serotonin reuptake inhibitors) have been prescribed for PWN for cataplexy control. I believe the SSRIs are extremely dangerous drugs and should not be taken by PWN for cataplexy control. I believe that the SSRIs are extremely dangerous for all people.

I know from my own experience years ago in using imiprimine on a daily basis that it controlled my cataplexy, but it also made me sleepier because it counteracted my EDS meds, and made me so foggy headed I couldn't think straight. I couldn't remember where the letters on a typewriter keyboard were located even though I had been typing by touch for years. (Yikes! Yeah, I said typewriter keyboard! Now you know I'm telling ancient personal history!) When I first started taking imiprimine, I already had years of experience in dealing with the cataplexy. I knew the triggers and I had developed techniques to regain control whenever I experienced cataplexy. Because I recognized that cataplexy is most likely to occur in a social setting, during competitive sports or games, and always when I go swimming as well as three days before the beginning of my menstrual cycle, I decided that I would not take imiprimine on a daily basis and would take it a couple of hours before I
anticipated taking part in social activities or other activities which would likely trigger cataplexy. Otherwise, I would do without the medication and deal with cataplexy. This method worked so well that I continue using it to this day. I didn't have to deal with very much brain fog and can still take part in activities I enjoyed. Of course, cataplexy is likely to show up any time. If my cataplexy is severe or if I have repeated attacks, I take my "little helper" and get relief within an hour. With one exception, I simply do without imiprimine most of the time and deal with the cataplexy. I always make sure that I am adequately medicated and that the imiprimine has taken effect before I go swimming. It takes muscle tone to be able just to float! I have had a couple of bad experiences in water and do not wish my death certificate to state that drowning was the cause of my demise.

Several years after I had developed this method, I saw a new neurologist and became very defensive when he asked a simple question about the way I took the imiprimine. I cussed him out and told him that I wasn't going to keep an even level in my bloodstream and I didn't give a damn if he liked it or not. This is my body and I have to deal with it the best way I can. Much to my surprise, the neurologist smiled and told me that my method was very appropriate.

I pass my experience on to my fellow PWN. If you take a tricyclic antidepressant for cataplexy control, follow my method because it will work. If you take an SSRI for cataplexy control, either get off of it (with a long slow tapering off process) or buy a lot of life insurance! (Term life is best because it is a lot cheaper and your beneficiaries will be rewarded because of your thoughtfulness.)

I encourage PWN and any other persons who take any of the SSRIs to go read:

http://www.drugawareness.org/Archives/Survivors/survivor_index.html
The SSRIs include Prozac, Luvox, Celexa, Zoloft, Paxil, Seroxat, Effexor, and Wellbutrin to name a few.

According to what I've read in the five years I've been online, Wellbutrin and Effexor seem to be helpful to persons who have IH (idiopathic hypersomnia). Typically they don't respond well to the stimulant meds which control EDS in PWN--because they don't have narcolepsy. They do seem to get better relief from EDS by taking Wellbutrin or Effexor.

No matter what drugs you take, they affect you where you live--in your head and body. YOU, not the doctors, are ultimately responsible for what you put into your mouth. Inform yourself, then "weigh and consider" the advantages and the disadvantages of taking any kind of medication. AND, OF COURSE, CONSULT WITH YOUR DOC BEFORE MAKING ANY KIND OF CHANGE IN MEDICATION. Accept the fact that sleep medicine, as a branch of science, is newly emerging. Help your doc and supply information to him/her. They are human beings like the rest of the population and can't possibly know everything.
I'm convinced that because I take imiprimine on an as needed basis which is seldom that I am better off. I am grateful to have a medication available which will control my cataplexy. However, I can do without that medication because I've learned to deal with the cataplexy.
I must be doing something right. My EDS med still work after taking it for nearly 35 years. I haven't developed a tolerance. I object to the ridiculous hype that I read on various narcolepsy lists about the supposed negative long term effects of Dexedrine and Desoxyn. (Ritalin is another matter entirely.)

Now, permit me to step off the soap box.

Nancy

PS Notice I haven't mentioned Xyrem. I leave that to the people who have experience with it. Please share your information.

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nanzzz <nanzzz@...

For a couple of years I have been posting information about the use of antidepressant medications, particularly the SSRIs, for PWN. The ONLY reason a PWN should be taking any kind of antidepressant medication is to control cataplexy. (Got depression? GET UNDEPRESSED! Depression is NOT a symptom of narcolepsy!)

(Chris) Shame on you, Nancy!! GET UNDEPRESSED!???? That's the same thing as telling you to "GET UNNARCOLEPTIC"! Depression goes hand in hand with countless long-term illnesses and is nearly always secondary to the initial illness, though far too many people go undiagnosed because doctors want to hand out pills for depression like the pills are magic. Then patients become even more depressed because the medications aren't doing anything but thinning their wallets (and causing sometimes horrible side effects).

According to what I've read in the five years I've been online, Wellbutrin and Effexor seem to be helpful to persons who have IH (idiopathic hypersomnia). Typically they don't respond well to the stimulant meds which control EDS in PWN--because they don't have narcolepsy. They do seem to get better relief from EDS by taking Wellbutrin or Effexor.

(Chris) Not so for this chick. There is only one thing that has helped me feel more alert in the past 10 years and that was discovered literally by accident.

---

Note: forwarded message attached.

In a previously posted message, I wrote:
<For a couple of years I have been posting information about the use of antidepressant medications, particularly the SSRIs, for PWN. The ONLY reason a PWN should be taking any kind of antidepressant medication is to control cataplexy. (Got depression? GET UNDEPRESSED! Depression is NOT a symptom of narcolepsy!)
Christie M responded:
<(Chris) Shame on you, Nancy!! GET UNDEPRESSED!???? That's the same thing as telling you to "GET UNNARCOLEPTIC"!
My response: Chris, I have done nothing to be ashamed of. If you notice, most of the time I address ISSUES, not personalities. I believe that my fellow PWN need the benefit of my experiences and what I have learned from other PWN in the last 13 years or so. I don't suffer from depression. Depression is not a symptom of narcolepsy. Have you ever considered that what you have learned along the way might be incorrect? You can do something about depression and it doesn't have to involve pills

I have previously written that PWN can experience "affective depression" around the time of diagnosis because narcolepsy is a humongous burden. (I didn't experience any kind of depression at diagnosis.) However, it is like grief; it fades with time. Affective depression is nothing more than a normal reaction. Affective depression is NOT clinical depression and can be overcome by "getting undepressed." By that, I mean accepting the disorder and doing positive things in life. Here is a list of some positive things you can do to overcome affective depression
Work--work builds self esteem and expands social contacts and contributes to financial well being

Continue with education; take classes for credit or for enjoyment

Become creative! All of us have creative abilities and that includes you, Chris. Take up painting. If your bathroom could use a coat of paint, paint it and be creative! Paint on canvass. You'll be surprised at what you produce. (Don't know how? Watch Bob Ross on PBS!)

Sing! Learn to play an instrument or get the one out you already know how to play. Join your church choir or community choirs.

Reach out to others. Go visit an elderly person and listen to their stories. They have life experiences to share if they have someone who is genuinely interested in learning.

Start collecting information on your family history. Visit your senior relatives before they die off. Write your own autobiography. Start scapbooking.

Have a yard sale; go to yard sales. Pick up bargains; go to the flea market

Plant a garden. Grow your own beans! Grow your own herbs

Collect rocks, stamps, buttons, fruit stickers, antiques, collectibles, McDonald toys
Go for a walk and take the dog with you. Get out of the house and blow the stink off!

These are just a few of thousands of ideas you can do if you want to get undepressed.

Christi you wrote,
<Depression goes hand in hand with countless long-term illnesses and is nearly always secondary to the initial illness, though far too many people go undiagnosed because doctors want to hand out pills for depression like the pills are magic. Then patients become even more depressed because the medications aren't doing anything but thinning their wallets (and causing sometimes horrible side effects).

No PWN has to be depressed, Christie. It is clearly your responsibility to find suitable treatment for whatever ails you. Use your energy to get a proper diagnosis.

I wrote:
<According to what I've read in the five years I've been online, Wellbutrin and Effexor seem to be helpful to persons who have IH (idiopathic hypersomnia). Typically they don't respond well to the stimulant meds which control EDS in PWN--because they don't have narcolepsy. They do seem to get better relief from EDS by taking Wellbutrin or Effexor.

<(Chris) Not so for this chick. There is only one thing that has helped me feel more alert in the past 10 years and that was discovered literally by accident.

This is called a "cliff hanger." Why don't you share your information with the list? Your experience might help someone else.

Nancy

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I was going through a really tough time in my life, and was very
depressed my doctor offered me pills. My friend said at the time,
are you depressed for no reason? No my life sucked ;) She said if
you take the pills you might feel better but your life will still
suck, work on making yourself whole again and if you are depressed
for no reason you can control take the pills, but pills will only
mask the issues you are feeling and you'll put off dealing with it.
She had a point, I went to a counsellor instead of to the bottle ;)
Depression is not a symptom of narcolepsy.
=I agree but I think that the symptoms of narcolepsy sometimes
present as the clinical description for depression
-lethargy, no energy, fatigue, vague pains, flat affect...
Work--work builds self esteem and expands social contacts and
contributes to financial well being
=Oh Nanz maybe you don't work where I do ;)
But you are right the cure to depression is to "do" as depression is
a passive disease....
Depression goes hand in hand with countless long-term illnesses and
is nearly always secondary to the initial illness, though far too
many people go undiagnosed because doctors want to hand out pills
for depression like the pills are magic.
=hmm actually I don't see that to be true, I know alot of people who
are chronically ill who aren't and people who are depressed who are
healthy. Sure we have low periods we think we have 'more' to deal
with...maybe we do maybe we don't...Its all perspective and getting
copi
bòÃnd support skills.
Shiloh

NOYDB - that was a great post!

Nancye, I did not say that every person with a long-term illness has depression. I said that countless people have it, secondary to the illness. We are are individuals, you know; EVERY illness is different for every person who has it, from a flu strain to cancer.

I HAVE told my story here more than once to try to find someone with similar experiences but they have been buried between posts full of arguing and bickering about who's right/who's wrong, who has what, who isn't really narcoleptic, blah, blah, blah..........so I now usually respond privately to ones who want to discuss the frustrations associated with having narcolepsy because it sure as hell isn't being discussed on this list.

I can't check my mail on a daily basis right now and for the past few months I haven't missed anything here. I joined this group hoping to "talk" to others who are in a similar situation but if's difficult to do with so many useless posts to sort through.

~Chris

Oops.........I think it ends with a 'y', just as mine ends with an 'i'. Oh, well.....

-It is ashame that the military can just throw you
aside after dedication and time someone puts in, but
it happens every where now a days. I have a brother in
the military and he is currently over seas and he will
probably be medically discharged because he has had
several knee surgeries and this last one has not went
quite as well as the previous. He has 12 yrs in but
they will give him like aseverance package as I
understand it. He doesn't want to except it because he
to was in it for the long haul, but one way to look at
it God has a plan for everyone and this must be his
plan for you as well as my brother.
Good Lick,
Michelle

This is nothing but an old, worn-out, urban legend. Not a bit of truth to it.
Have no fear!
JT

Dear NOYDB,

Great post regarding depression and your personal experiences with lost abilities. You not only "get it" but also said it with sincerity and grace. I've had similar reactions to the loss of some of my abilities and it was very meaningful to me to read your account.

My condition is increasing in intensity and frequency. The episodes have not responded to treatment and, because of some of their unique features, they are not likely to respond.

I do not expect to ever drive again.I had a sleep attack and consciousness behind the wheel on February 9th. I am so grateful I didn't harm anyone else. I hit the inside and outside concrete barriers (according to the police report) then left the road. I hit a packed snowbank and that launched my car into the air. It rolled in the air and landed on the driver's front side of the roof. After sliding on the roof down the ravine, it hit a rock which rolled it onto the wheels. It stopped just short of the lake at the bottom of the ravine. Thanks to my seat belt, I was treated at the ER and released after 5 hours. I had glass shards embedded everywhere, but the only significant injury resulted from a strong impact between the roof and my spine at C4-5. Even that resolved over the following weeks.

I know how lucky I was (certainly everyone else felt that way) but it was hard to feel lucky. After a while, surviving at least became acceptable to me and I continue to focus on trying to maximize my abilities, accept my disabilities and get on with living in this new phase of my life.

One of the positive consequences is that I have had to go out and meet my neighbors (I moved her last September) and ask them help. I have even started to find a way to accept their help with some grace. True to my independent personality, I wanted to respond to their kindness by giving something back. I now take care of one neighbor's roses, mow another's lawn, wash and keep clean the inside of a neighbor's car who can still drive but who has rheumatoid arthritis. I also walk the dog of one of my volunteer drivers and I hired her high school daughter to drive me to and from work this summer on the two days a week I am still able to work. All of that's really, really good and it makes me genuinely happy.

The need to "pay" people back for their kindness is my issue, not theirs. They don't expect anything in return and they are happy with just my companionship. I will continue doing these things but, with a lot of effort, I am slowly beginning to accept the idea that they like me, and just what I do for them. But for becoming "dependent" in some part of my life, I would only have understood that they like me at the intellectual level, but not at the emotional level. I was always a "good" friend, but now I have the ability to be a "great" friend.

I am paraphrasing something I read in O Magazine, because I can't find it right now. For me, they were the right words, at the right time and they started the change in my comfort some which now allows me to accept help without feeling bad. When I find the actual quote, I will post it. It goes something like this: "A beautiful dance of life occurs when help is freely offered and graciously accepted."

Thank you again for your post, and I encourage everyone to post on this site. The intellectual information is great, but the emotional information is equally valuable. I don't think the comments have to be upbeat to be helpful. We all have negative feelings about our suituations. It's not only reasonalbe to have them, but its also necessary to express them. Reading some of the painful thoughts expressed on this site have helped me a great deal by knowing there are real people there who have had the same feelings I have had and continue to have. It is helpful to have a place to safely express those feelings since our family and friends often worry about us when we talk about it. For me, I immediately want to comfort and reassure them, but that's really denying the legitimacy of my own feelings in order to make them feel better.

Whether expressing positive or negative feelings, each of us have the opportunity to unknowingly say "the right words at the right time" and help another PWN or their families and friends. KEEP HITTING THOSE KEYS.

Renee

NOYDB <gizda1@...

I loved the quote!

Thanks!

beth
Renee Selig <rjteddy@...

"A beautiful dance of life occurs when help is freely offered and graciously accepted."

I missed Nancy's original post due to my "delete" set up :)

I will say this, with ANY live altering/changing/threatening illness depression is very commonly found to be underlying. I go in and out of it.

I remember my Dad being diagnosed with Parkinson's many, many years ago at Mayo clinic. His Dr. asked him if he was depressed, my Mom and I were floored to hear (big, strong) Dad say yes. The Dr. proceeded to explain that is was common and normal to feel this way. Dad was playing golf daily, living the full fun retirement live and suddenly his life changed, inside I am sure he feared for his survivors and such. SO I totally agree depression is not only a normal reaction, But Common. I tend to believe Mayo over Nancy.

I also feel that we are free to treat ourselves the way we and our Dr.'s see fit.

I think is sad that SO many people fear posting to this list. Especially since this list has many kind, informed PWN that can help each other, but then Nancy post's and most everyone gets quite or angry. Don't let her get to ya, she is the Queen of N and that is all there is to it, let her wear her crown and live her life. I am guilty of arguing back with her but it is usually due to someone or a few people emailing me privately, upset because of her harsh words. Sadly I think she is also very depressed.

As for listening to your Dr. or not, that is also anyone's choice. I recall going through menopause and suffering Horrible sweat's (power surges as my friends called em!) My Dr. had me on hormones RX's and I felt worse. I stopped the RX's and used Primrose Oil (found in health food stores and vitamin isle!) with-in a few weeks the sweat's were gone and I was even able to control my moods better. Added bonus -- I lost weight!

I do not take my Provigal as prescribed, my Dr. knows this. She has me on 1 or 2 a day PRN (as needed). I take 1/2 to 1 ONLY when I must be awake all day, but I am lucky enough to sleep usually when I need or want to. I know this can't work for everyone, my point is we KNOW our bodies. I think a healthy break from Provigal helps tremendously! Seems much more effective (for me) when I do not take it daily.

I envy those that can mediate or do yoga for depression, I have tried that and chanting, I think I have so many things going on I just cannot clear my head, I wish I could! There is much I would love to forget!

As for depression, Anxiety and moods ... Xanax works for me. I tried Zoloft years ago an then Paxil and a few others, Xanax has worked best, but that is just my story!

What is good for Nancy, me or anyone else is not always good for everyone else! But sharing and caring in a pleasant supportive way sure is nice!

Sue :)

Dear Group,
I have asked about body aches pertaining to Provigil in this group
before and it appears that some of you did have achey joints and
muscles as a side-effect from the Provigil as well. Now, however, it
is almost two-months later and I have been taking 300 to 400mg of
Provigil daily and now find that my knees and legs are so stiff and
sore that it takes me several minutes to just get out of bed in the
morning. It is like I have done really extensive exercise or
something, and seems to be increasing in intensity rather than going
away. I see my Dr. next week, but she really doesn't seem to know a
whole heck of a lot about Provigil other than to suggest I go off of
it. Now, I know that if I go off of it I will be even more sleepy
than I already am. I do seem to have hit the ceiling of alertness
that using Provigil consistently seems to have, and, in fact, don't
even know if it is still really working. However, I would prefer to
stay on it, or at least have the option to stay on it than otherwise.
Does anyone else have anything to say about severe achey legs and
joints? By the way, I am 45 years old, normal weight, no problems
with arthritis, etc. prior.
Thanks!
Peggy

Dear Peggy,

Yes, I too have had deep bone and joint aches and I was on Provigil for the last 2 years. The pain was significant and I felt like I would feel better if I could just move my flesh aside and rub right on my bones. Sometimes the pain would lesson with mild, but sustained, activity including weight-free stretching. The more alert I was, the less pain I had.

My doctor felt that it might be from the Provigil and said there have been some discussions at the annual Sleep Medicine Conference among doctors about such pain as a possible side effect of Provigil. However, he feels there is no consensus on this subject at this time. At this point in the development of Sleep Medicine, we all need to stay tuned and share our information.

I've needed daytime sleep for the past 3 years. My sleep schedule includes an hour of daytime sleep between 3 and 4 pm. My level of daytime alertness decreased over the past several years in spite of the Provigil. I was in a fog for whole days at a time and had an irresistible urge to sleep again shortly after I got up at 7 am in the morning. and several hours before my afternoon sleep. I don't call it a "nap" although the word fits. Calling it "afternoon sleep" seems more respectable and adult-like.

I have been on Mirapex for the past 8 years and it can have the side effect of rebound sleep shortly after taking the medication.

When I started Provigil, I was on Clonazapam also, but it gave me that drugged out stare and lethargic movements. We substituted Ambient about 18 months ago even though we knew it would probably be less effective at consolidating my fragmented nighttime sleep. With the Ambient, my nighttime sleep is now fragmented into 2 or 3 segments. However, that change did not seem to increase my joint and leg pain.

I tapered off the Provigil three weeks ago and started taking Ritalin LA (long acting) about two weeks ago. I know of three formulations for Ritalin. The LA form lasts about 8 hours, another formulation lasts 6 hours and the standard Ritalin is gone after about 4 hours. Those times can be affected by the patient's level of activity and when and what is eaten.

The Ritalin gave me my first significant improvement in daytime functionality. It was great. As you probably know, Ritalin increases the level of dopamine in the hypocampus. That neurological center creates or enhances "associative thinking." For me, that meant actually being able to think during the day rather than being in a fog which rendered me useless for work, play, relaxation or anything else.

Once on the Ritalin, I was like a kid in a candy shop. I did everything I had been unable to do for a long time and, like a kid, I misbehaved. I did not have any daytime sleep for about 10 days. Predictably, I hit the wall of sleep deprivation. Additionally, my nighttime sleep fragmented further. We assume I am experiencing a form of insomnia which can be a side effect of the Ritalin.

Yesterday, I switched from taking the LA (long acting) formulation once in the morning to taking the short acting formulation twice a day, once after I get up at 7 am and again at noon. On the two days a week I work (9 am to 2 pm) I will not be taking the second dose since I don't get home until 2:30 pm. Taking it then, would insure no afternoon sleep and might enhance the risk of further fragmenting my nighttime sleep. We are going to see how sleepy I get after I get home on my two working days. I've just been on the new routine for a day, so I will post the results of our experiment later.

When I first started the Ritalin, I also experienced the common side effect of vivid, often disturbing dreams. However, that issue has significantly decreased on its own, even while I was still on the LA formulation.

Throughout this medication change, I have continued to have the deep bone and joint aches, especially in my legs, hips and back. I usually wake up at night for the first time between 12:30 am and 4:30 am and I think the pain is part of the reason. I don't have any underlying cause for the pain except for several narrowed disc spaces. None are herniated and the early arthritis I have seems centered principally in my spine at C-4 and C-5.

I have had some PT to strengthen my torso muscles to try and control any mechanical problems from contributing to the pain. Since I stopped driving this past February, and there is no public transportation in my area, I have discontinued the PT while I find transportation to and from work and find ways to adapt to my non-driving life. I hope to return to PT in the future since it really did help. For right now, I am doing the exercises I originally leaned. However, without having someone noting my progress, it is really hard for me to do them consistently. I'm acting like a kid who no longer has to report to the Principal's office once a week. That "child" thing seems to keep popping up in my life even though I'm 54 years old.

Thanks for talking about your experience with Provigil on this message board. I think this is the kind of information sharing that is helpful to many of us.

Renee and her ferocious companion, Teddy (as in "teddy bear"). He's really a Bichon but he acts like he's a person. I am sure I am responsible for his confusion.
Peggy Gooday <pgooday@...

Dear Group,
I have asked about body aches pertaining to Provigil in this group
before and it appears that some of you did have achey joints and
muscles as a side-effect from the Provigil as well. Now, however, it
is almost two-months later and I have been taking 300 to 400mg of
Provigil daily and now find that my knees and legs are so stiff and
sore that it takes me several minutes to just get out of bed in the
morning. It is like I have done really extensive exercise or
something, and seems to be increasing in intensity rather than going
away. I see my Dr. next week, but she really doesn't seem to know a
whole heck of a lot about Provigil other than to suggest I go off of
it. Now, I know that if I go off of it I will be even more sleepy
than I already am. I do seem to have hit the ceiling of alertness
that using Provigil consistently seems to have, and, in fact, don't
even know if it is still really working. However, I would prefer to
stay on it, or at least have the option to stay on it than otherwise.
Does anyone else have anything to say about severe achey legs and
joints? By the way, I am 45 years old, normal weight, no problems
with arthritis, etc. prior.
Thanks!
Peggy

Sorry if this was a hoax guys. It came from a very good source that I thought would have investigated it first before forwarding it to me (of course, I should have done that, but thought the General was in the know).
Sorry it took your time in reading it.
Sue

http://www.nidcd.nih.gov/health/voice/auditory.asp

I recently posted a response that included a paraphrased quote. When
I read the article, I found it helped me in my effort to adjust to my
need to ask for help from others. I've now found the exact wording.
It is in the April 2004 edition of "O" The Oprah Magazine.
"There is a dance of goodwill when a gesture of kindness is freely
given and delightedly received.".... Adapted from: The Etiquette of
Illness: What to Say When You Can't Find the Words, by Susan P.
Halpren.
The magazine article is entitled, "I didn't Know What To Say To You -
What do you say to someone who's seriously sick?" The whole article
was excellent and applicable to people like us who suffer from a
serious medical conditions. It also gives examples of what your
family and friends might say to you or to others who are seriously
ill. For that matter, it gave me a way of choosing what to say to
others who are in difficult circumstances which I cannot "fix." I
reccomend it to all and I am looking for a used copy of the book.
Renee

Try looking on half.com

Hello Everyone,

Since Bill Dement has been called the "Father of Narcolepsy" in recognition of his many decades of research, then Sue Carella surely must be the "Mother of Narcolepsy." I don't know of any other person who has worked more than Sue Carella to further the cause of PWN. She has co-founded two narcolepsy organizations, the American Narcolepsy Association and the Narcolepsy Network. She has testified before a Congressional Committee about narcolepsy. The result of the meetings of the National Comission on Sleep Disorders Research was recognition by the National Institutes of Health and Congressional funding. She has served as editor for
"The Eye Opener" published by ANA and for the "Network," Narcolepsy Network's informative newsletter which is a lifeline especially for PWN who are not yet online. She is now seriously involved in setting up local support groups. These are but a few of the many things Sue Carella has been involved in. If it weren't for her efforts, talent, and intellect, we PWN would not have a national support and information organization.

Yes, Sue is a mother to three sons and is devoted to them and her grandchildren. However, she really hasn't ever received the recognition she should have so I say thanks and

Happy Mother's Day, Sue Carella, "Mother of Narcolepsy."