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As far as turning in hours... unless you are salary, most jobs still are hourly.. I dont understand why they say you couldn't take your hour lunch break to do whatever you want.. I have heard of places that you can't leave the premises, but not that you can't have your own time, especially unpaid. What type of job do you have? Also I believe that all jobs by law have to give you two 15 (or so) minute breaks in an 8-9 hour day that are paid, and a lunch, usually unpaid... I am supposed to get these breaks and lunch but I too usually end up working through most of them, easier not to fall asleep though.. :) I dont usually schedule naps, although I have thought about it lately as it may help me handle things better... They changed my medicine today, so we shall see.. well sorry to ramble on and on... Pam

Hi everyone,

I'm wondering if there's anyone out there who is working full-time, but in order to get through the day takes scheduled naps. I'm trying that where I work and it's really pretty socially awkward even though they're letting me do it. Also, this is my first "real job" and I could use some advice about how to deal with illness and the workplace. For example:

1) Is it common to be full-time, but still turn in hours?

2) If you work a 9 hour shift and get an hour for lunch - is that usually paid or unpaid?

I'm asking this because I work nine hours/day with an hour lunch and get paid for a 40 hour work week. But during that "unpaid" hour I'm usually still working. I thought that I could take my naptime out of that hour, but they said that I'd have to stay an hour later instead or come in on Saturdays. I guess these are the breaks, but I can't imagine extending my awake time by that much.

Aaaggh!

Any ideas or mentorship or advice would be helpful.

Thanks,

Melinda (23, recently diagnosed with N.)

Melinda,

Thanks for the input. Are you a graduate student?

Good point about sleep disorders and mental illness needing to be differentially diagnosed. I think symptom overlap as well as true comorbidity are probably two of the biggest problems clinicians face, in terms of trying to help people (if you can't figure out what's wrong, you have less of a chance of treating it successfully. (And yes, I realize homosexuality isn't in there anymore, but it's just a prime example of the fact that the DSM isn't divinely determined.)

Also, thanks for the point about good integration of psychiatry and neurology (we might note here Freud, however we want to regard him, was actually trained in neurology, which I'm sure you know.) I was diagnosed by a neurologist, in large part because my psychiatrist was near me at the time, but now the primary care for my narcolepsy comes from my psychiatrist, and it works out well. I would say that if you're having mental health issues, even if you're just seeing a psychologist, it's probably important for them to keep in touch with your neurologist.

My thoughts,

Rose

HI Carol,
I would request a copy of your medical records from this doctor. You are
legally entitled to them, but the doc or hospital may charge you a nominal
fee for requesting them.
The doc should have written a summary of each visit, and his impressions and
recommendations for treatment.
Look at your records first. But then ask for a sleep study. Take the
records to your doctor and ask him to explain them to you, if needed-often
lots of medical jargon that people without a degree in medicine or some
knowledge of Latin have a hard time interpretting.
If he's not helpful, get a second opinion. He may not be educated about
sleep disorders. (I've learned that they don't know everything, but they
will fake what they don't know - this from my friend who is a doctor!)
Best of luck,
Beth
Date: Wed, 11 Jun 2003 16:25:38 -0500
From: "Lady of the Lake" <lotl777@...
Subject: Newbie
Hi, my name is Carol and I *think* I have Narcolepsy. I say I think because
my doctor has never actually told me what the actual diagnosis is. I tend
to fall asleep many times during the day and at one point was sleeping up to
6 hours a day and still sleeping a full night. I had stopped driving for
awhile because I almost fell asleep while driving home several times and it
really scared me.....not to mention my passenger.
I am being treated by a general practitioner and have not had any sleep
studies done, nor have any been suggested. I am being treated with Ritalin
but am told that I'm on a fairly high dose now and that if this dosage
doesn't work, I will have to go to my psychiatrist to have him manage the
medication for this disorder. I already see a psychiatrist for depression
and anxiety disorder. I am on disability and this sleep disorder just adds
to my disability unfortunately.
I would like to know if anyone out there has been treated with Ritalin, did
it work and what is an average dose?
Carol
Lady of the Lake

I am currently taking provigil 600 mg a day, dexedrine tablets 25mg a day
and dexedrine spansul 90 mg a day as well. I still sleep all night and nap
on average every two hours. I used to have days where i would feel my "own"
energy but that has not happened in a long time. i go off all meds for at
least two weeks every year but it really does nothing for the tolerance
level, i have, however, over the last two or three years come to terms with
the sleeping and do things when i have energy even if it is making valentine
cookies in january because i may not be up again until march. i still look
at the want ads even though i have not been able to work in over ten years.
this last year i quit making lists of to do things when i am awake because
by the time i see them again after waking they are out of date. i rely on
my husband an extraordinary amount and try to pitch in when i can but then
it throws his schedule out of whack. he works two jobs to pay for the
prescriptions, etc. since medicare does not cover them. it took a long time
but i have learned to let go of a lot of interests, friends, etc. and just
be glad when i am awake and feeling good and to quit worrying about "wasting
awake time" and relaxing more and doing things that don't suck all my energy
up. i'm reading more than i have since school and trying to just enjoy
being awake. i only hope it won't get much worse before something comes
along to help. i'm at the limit as far as medications go and that's that.
mikey

The lively interchange regarding the classification of narcolepsy in the DSM certainly confirms the conclusion that I came to many years ago. That would be that the overwhelming majority of narcoleptics that I have encountered are individuals with a high degree of intelligence regardless of the level of their formal education. That many narcoleptics have achieved advanced degrees regardless of having to cope with narcolepsy is truly amazing.

We all know that there are varying degrees of narcolepsy and its manifestation in different individuals. I would imagine that the hypocretin level in the cerebrospinal fluid could confirm the relative degree of severity. My level is 43 where 200 and above is considered normal. I would consider my narcolepsy to be relatively mild.

Another observation in comparing narcolepsy and its relationship to mental illness would be that schizophrenics also tend to exhibit significantly high levels of intelligence and creativity. The age of onset of schizophrenia somewhat overlaps that of narcolepsy although it tends to be predominantly in post adolescence. Schizophrenics tend to hear voices where narcoleptics experience hypnogogic hallucinations. Because the effects in both conditions involve neurotransmitter synapse reactions, it would be hard to deny that there are similar misdirected processes going on in the brains of those with mental illness and narcolepsy. The genetic connections in narcolepsy appear to be stronger than those in mental illness.

The hang up that people have tends to be the stigma that is attached to mental illness. Thanks to Beth and Rose who have so thoroughly explained the purpose of the DSM and its axes. Perhaps the campaign should be to move narcolepsy from Axis I to Axis III. Perhaps this debate has or could be better addressed by the Narcolepsy Network and its advisors. There may be serious funding implications for such a move.

James Sindelar

"Do not flush while train is in station."

To add to the discussion about the DSM-IV. I was recently diagnosed with narcolepsy (age 23) and am a research assistant at a Bipolar Clinic. The DSM is all over the place here. While I'm not an expert, I want to throw in my ideas. I think that one of the main reasons that narcolepsy is still listed (and it's important to note that homosexuality is NOT listed in the current DSM-IV) is that sleep disturbance is an almost universal symptom of mental illness. Narcolepsy is still way underdiagnosed and many clinicians tend to see its symptoms as a depressive episode. It's important to keep it in the manual so that psychiatrists, psychologists, and other clinicians are forced to continue to differentially diagnose.

There is a book called something like "The Clinical Interview and the DSM-IV." In it is a case study of a man who's family sees his symptoms as "behavior problems." By using the DSM correctly, the clinician is able to determine that he has narcolepsy and get him help. I was diagnosed with MDD (major depressive disorder) and in my early teens with Anxiety Disorder before I was diagnosed with Narcolepsy. My psychiatrist and nuerologist are in close contact at my request. Both doctors are confident that my symptoms are interconnected and that any energy spending trying to figure out if my depressive symptoms are a result of my narcolepsy blah blah is useless. No matter what, my brain has some chemical differences that benefit from medication. And no matter what, my "mental health" is affected by the fact that I'll be dealing with narcolepsy my whole life.

I hope all this is making some sense. I guess my overall point is that in my personal experience I've benefitted from Narcolepsy's inclusion as a mental disorder and from the links of disciplines like nuerology and psychiatry.

-Melinda

[Melinda Phelps]

In a message dated 6/10/2003 2:57:46 PM Eastern Daylight Time, ralphfiennesfan@... writes:

Curious about how many of us with narcolepsy were born after our
parents returned from Vietnam. Wonder if Agent Orange couldn't have
been a factor in this?
I'm Canadian, no Vietnam or Agent Orange connection here.
.

Okay, just one more moment on my soap box before I go take a nap. I think the thing we need to keep in mind is what the DSM really is, it is a coding manual for insurance claims. If a disorder is listed, a psychologist or psychiatrist can safely bill your insurance company for treatment of the disorder. The DSM is not cast in stone, things get added, things get taken away (for example, homosexuality was listed as a disorder through the DSM-III).

Also, when an individual is assessed using the DSM they are usually examined on multiple "Axes." I need Beth's help on this one as I don't remember them all, but if memory serves, one axis contains the personality disorders, another most other "mental illnesses," another deals with physical health problems (generally reported by the patient or their family), another assess daily functioning, etc.

Rose

Beth,
What I was really trying to ask was which axis are sleeping disorders listed
under?
As far as my question about the similarity of narcolepsy to mental illnesses
of various sorts the question was really more rhetorical than anything else.
I agree with you on the issue of stigma--there is an extensive scientific
literature (and I think most people know intuitively) that shows the
mentally ill are highly stigmatized. From the point of view of trying to
receive federal funding for research on narcolepsy, we are probably better
off trying to prevent ourselves from being associated with the mentally ill.
However, why should we go along with the negative stereotypes about the
mentally ill? I know most if not all of us have a lot of things going on in
our lives, but I think simply saying, I have a brain disorder, so do a lot
of other people (including the mentally ill) and that doesn't make me less
of a person, could in the end do a lot of good for a lot of people,
ourselves included.
I'll get off my sociologist's soap box now,
Rose

Hi Beth,

I hope this helps to clear the air somewhat? Please read on

While the authors acknowledge that there is still much work to be done in adjusting categories, their general approach to classifying disorders is not in question. However, the notion of mental disorders that results from this approach is an extraordinarily heterogeneous one. In addition to paradigmatic mental disorders, like schizophrenia, depression or anxiety, other categories include, for example, cases with known organic etiology (e.g. substance intoxication and withdrawal), or neurological disorders (including sleep disorders like narcolepsy), developmental disorders (like autism) or mental retardation. The reader has to wonder what makes a disorder mental. Known or suspected organic etiology is clearly no reason for exclusion from the class of mental disorders. However, what are the reasons for inclusion? The obvious assumption that seems to follow from the range of disorders that are included, namely that the most important reason for inclusion is the existence of
significant psychological symptoms, does not seem to hold either. There are other neurological disorders that have important psychological symptoms and are not mentioned in the DSM. And conversely, it is not clear whether the symptoms of e.g. all sleep disorders should really be counted as predominantly psychological. What justifies the inclusion of some, and the exclusions of other disorders? Some more substantial general theoretical reflection on what constitutes a mental disorder is definitely called for.

Metapsychology online

http://mentalhelp.net/books/books.php?type=de&id=1504

Art
artsday@...
Beth <ralphfiennesfan@...

Hi Rose,
The DSM IV (the one here on my desk anyway) lists sleep disorders
under a separate catagory unto itself. Narcolepsy is under this
catagory.
The Introduction to the DSM will answer many of your questions.
THE DSM states in the introduction that "... there is much "physical"
in "mental" disorders and much "mental" in "physical" disorders. The
problem raised by the term "mental" disorders has been much clearer
than its solution, and unfortunately, the term persists in the title
of DSM-IV because we have not found an appropriate substitute."
(DSM-IV page xxi.)
It goes on to further state that no definition adequately gives exact
boundaries for the concept of "mental disorder. because it lacks "a
consistent operational definition that covers all situations."
As far as whether or not it's considered a mental disorder, I can't
answer that at this time. But the fact that it is a brain
disfunction problem, I'd say that it probably is.
I also can't answer your question about how different narcolepsy is
from other disorders like schizophrenia or bi-polar disorder. Do we
have any medical professionals who could answer this question?
As far as not wanting to be lumped in with people with "mental
illness," I believe that it's a matter of stigma. I can understand
why narcoleptics don't want to be lumped in with a group that has
stereotypes such as those portrayed in movies like "One Flew Over the
Cuckoo's Nest" or "Girl, Interrupted." Yet narcoleptics also have to
deal with a rash of comedy movies which have included ridiculous
portrayals of our symptoms (Deuce Bigalow,Ace Gigaloo" and "Bandits"
with Bruce Willis and Billy Bob Thornton (bank manager suffers from
cataplexy) are two that come to mind, even though I know there are
more.
Getting sleepy, will write more later, if necessary,
Beth

Curious about how many of us with narcolepsy were born after our
parents returned from Vietnam. Wonder if Agent Orange couldn't have
been a factor in this?
PLease reply if you think there is a possible connection in your case.
Beth

Hi Rose,
The DSM IV (the one here on my desk anyway) lists sleep disorders
under a separate catagory unto itself. Narcolepsy is under this
catagory.
The Introduction to the DSM will answer many of your questions.
THE DSM states in the introduction that "... there is much "physical"
in "mental" disorders and much "mental" in "physical" disorders. The
problem raised by the term "mental" disorders has been much clearer
than its solution, and unfortunately, the term persists in the title
of DSM-IV because we have not found an appropriate substitute."
(DSM-IV page xxi.)
It goes on to further state that no definition adequately gives exact
boundaries for the concept of "mental disorder. because it lacks "a
consistent operational definition that covers all situations."
As far as whether or not it's considered a mental disorder, I can't
answer that at this time. But the fact that it is a brain
disfunction problem, I'd say that it probably is.
I also can't answer your question about how different narcolepsy is
from other disorders like schizophrenia or bi-polar disorder. Do we
have any medical professionals who could answer this question?
As far as not wanting to be lumped in with people with "mental
illness," I believe that it's a matter of stigma. I can understand
why narcoleptics don't want to be lumped in with a group that has
stereotypes such as those portrayed in movies like "One Flew Over the
Cuckoo's Nest" or "Girl, Interrupted." Yet narcoleptics also have to
deal with a rash of comedy movies which have included ridiculous
portrayals of our symptoms (Deuce Bigalow,Ace Gigaloo" and "Bandits"
with Bruce Willis and Billy Bob Thornton (bank manager suffers from
cataplexy) are two that come to mind, even though I know there are
more.
Getting sleepy, will write more later, if necessary,
Beth

Nancy,
I wonder, was your question about my having a mental illness meant to be
funny, or meant to be serious?
No, Nancy, I am not diagnosed with a major mental illness. Do I suffer from
depression? sure Anxiety? Probably
THe reason I forwarded this email was to let others who were interested know
about this if they were interested in participating. If it doesn't apply to
you, then don't participate. But if you have narcolepsy and don't suffer
from depression, then you are a rarity.
Research on narcolepsy shows that most people with narcolepsy do suffer from
depression. It is the National Institutes of Mental Health
that are primarily doing studies on chronobiology, the study of sleep. I'm
sure you are aware that 1 in 5 adults in America will suffer a major mental
illness at some point in their life, and people who have chronic illnesses
(like us) or who are caregivers (or close loved ones, in our case) are much
more susceptible to depression. I would be glad to send you bibliographic
information, if you are interested.
I believe, though I have no scientific proof, and don't know of a scientific
study to date on this, but I believe that at least some of us were diagnosed
with a major mental illness BEFORE we were correctly diagnosed with
narcolepsy. This is why having input whenever NIMH asks for it is important.
They can't know what our problems are if we don't speak up. All of the
info they get is from scientists, not the diagnosed. It's always helpful
for them to hear from individuals, not just scientists, because they need to
see a human face and hear from a person who has experienced it to make it
more tangible, more real; not just a grouping of stats. If we can educate
and bring more awareness about the issues that we face, such as possible
misdiagnosis, maybe we can prevent others from going through years of
incorrect treatment or medication regimes like some of us have faced.
Also, it would aid in those who administer therapy to have more insight into
the problems that we face, and give them more ideas of different kinds of
therapy that would be beneficial (and therapy can help )
This was simply an opportunity for those of us who are interested to give
input into this study. Any of us who are students who have tried to get
access to disability services and know what a pain it is can appreciate the
opportunity to give our opinions about what it is like to have a disability
that affects our thinking and ability to stay awake.
I don't know if you realize this or not, but narcolepsy is considered to be
brain damage. While it's not a mental illness, it does affect our mental
health. If anyone can prove to me that sleep problems don't contribute to
mental health and psychological well being, then I'd be glad to look at
their research.
WHile narcolepsy is not a "mental" illness, it is listed in the Diagnosic
and Statistical Manual (DSM) so that mental health practitioners
can know the diagnostic criteria, so that we as practitioners can
distinguish it (and rule it out) from other mental disorders.
Sincerely,
Beth (MSSW)

This should be interesting....

Beth, I have a question. Do you consider yourself to be mentally ill? Nancy

In a message dated 6/4/03 8:36:53 PM, nanzzz@... writes:
<< As an OLD practicing PWN, I would like to know what the advantage is for
young narcoleptics to separate themselves from those of us over 30.
Narcolepsy is no respector of age, sex, race, nor does it respect any
belief system.
It is an honest question and I would like an honest answer.
Doesn't seem to be any point to it to me (I'm 22), but I seem to have missed
most of this discussion...

Hello Christie,

I appreciate your response because I am aware that you host the chats for younger narcoleptics on talkaboutsleep. com. As you know, I wholeheartedly support your personal efforts. In no way should my simple inquiry be considered as anything negative. Nor did my inquiry send any arrows to the young PWN on this list.

I recognize the work you do in reminding people about the chats. And I'm aware that Brian Hunter has been recognized by Narcolepsy Network for the work he had done in setting up YAWN. He's going to be a fine doc.

Do a lot of young PWN participate in TAS chats?

I do have a purpose in asking my question and will communicate with you another time. I think I'm too sleepy right now to write intelligently. If I had any sense, I would head to bed instead of sitting here yawning while talking about YAWN.
Please give my regards to Tracey and other TAS people.
Nancy
J Bahr wrote:
Hi Nancy...and All
Like yourself, I consider myself one of the "older" PWN.....though my N/C did not come around until my later 20's and I already was going to college and had a family. I never really dealt with many of the "social issues" nor trying to participate in sports or dating...etc... With the unfortunate lose of Y.A.W.N. Talk About Sleep wanted to help fill the gap as best they could be offering a place for the "younger" PWN to gather and chitchat. I do feel that most younger folks tend to be drawn in by their peers and would much rather ask another 18yr old about their dating experiences rather then asking me....a 40 yr old! LOL I had really hoped that more young folks would attend the chat, my envision is a "social gathering" of other like aged folks to just come and chit-chat...about issues that they are dealing with at that time. Not necessarily even N...but just a "safe" place to hang out and enjoy themselves. The other N chats continue to
grow, and I sure enjoy chatting with old friends and meeting new ones....it is my means (along with the message boards) of support.Thanks All! IBC

Nancy Valencia <nanzzz@...

Hello Everyone,

As an OLD practicing PWN, I would like to know what the advantage is for young narcoleptics to separate themselves from those of us over 30.

Narcolepsy is no respector of age, sex, race, nor does it respect any belief system.

It is an honest question and I would like an honest answer.

Nancy

While it is probably best for you to ask for a referral from your neurologist, you don't necessarily have to go that route. Go to this url: http://www.aasmnet.org Find "patient area" and you'll find a listing of certified sleep disorder centers located in your state. You can make an appointment directly with those places. At least, have the information in hand, if you ask the neurologist to refer you. Keep us posted on the events in your life.

Nancy

Hey Chris,

I've been wondering why you hadn't posted! I'm downright tickled to learn that you are going back to school. Great to hear from you. Nancy

Howdy ya'll

First I want to say that it is great to see so many posting now. It seemed we went through a dry spell where not many posted at all. (me included) I think it is great that young adults and teens are finally being diagnosed now at an early age. I so wish that had been the case with me. I would have been able to finish college back then had I known what I know now. The college I attended did not want to work with me at all and I found myself almost flunking out of school. So I quit school and went to work.

Well, in March of 2001, I was diagnosed with the big N. Once I found out what it was and what I can do about it, I figured it was time to go back to school. So I enrolled in Indiana State and the first thing I did was to talk to the proof. of such class one the first day of classes. Some still did not know what it was but, thanks to the internet, I had printed up a mess of facts and put them in a handout format. It helped greatly. I have yet to have a problem with one of my profs in class. With luck, I will have my degree in another year or two.

Chris

Hi Nancy...and All,

Like yourself, I consider myself one of the "older" PWN.....though my N/C did not come around until my later 20's and I already was going to college and had a family. I never really dealt with many of the "social issues" nor trying to participate in sports or dating...etc...

With the unfortunate lose of Y.A.W.N. Talk About Sleep wanted to help fill the gap as best they could be offering a place for the "younger" PWN to gather and chitchat.

I do feel that most younger folks tend to be drawn in by their peers and would much rather ask another 18yr old about their dating experiences rather then asking me....a 40 yr old! LOL

I had really hoped that more young folks would attend the chat, my envision is a "social gathering" of other like aged folks to just come and chit-chat...about issues that they are dealing with at that time. Not necessarily even N...but just a "safe" place to hang out and enjoy themselves.

The other N chats continue to grow, and I sure enjoy chatting with old friends and meeting new ones....it is my means (along with the message boards) of support.

Thanks All!
IBC

Nancy Valencia <nanzzz@...

Hello Everyone,

As an OLD practicing PWN, I would like to know what the advantage is for young narcoleptics to separate themselves from those of us over 30.

Narcolepsy is no respector of age, sex, race, nor does it respect any belief system.

It is an honest question and I would like an honest answer.

Nancy

Thank you William, You raise an important point. Speaking with people on
other lists I have noticed many people were not diagnosed until well into
their adult lives. When you begin to show symptoms, and when you are
diagnosed make a big difference in you experience. I for example, did not
show symptoms until I had completed my undergraduate work and started my
graduate work. Thus my experience has been very different from a lot of
young people on this list. I have never had to "prove" how narcolepsy
affects me to any of my professors. If I say anything I say I have a health
problem, which they all know (because the number of graduate students is
relatively small in most departments). As a graduate student people assume I
am doing my best, whereas many undergraduates who behave similarly would be
assumed to be slacking. Also, while you and others grew up in an era of
limited use of stimulant medication, a good percentage of my friends were at
some point diagnosed (correctly or incorrectly) as having ADHD and put on
stimulant medication. This makes a distinct difference in the culture of
young people. Because it is relatively common, taking stimulant medication
is almost seen as normal. Further, partially because of easy access, illegal
use of stimulants is also very high. Recent research done on my campus found
that many students with valid prescriptions for stimulant medications felt
the need to hide their medication from roommates etc. for fear that their
medication would be stolen for use or sale by others. It is possible that
this phenomena is not new, however, after speaking the researchers working
on this project I understand that this phenomena is generally considered to
be recent.
Also, I in no way assumed that older individuals did not have collegiate
experience, but rather that our collegiate experience may in some ways be
different than theirs. For example, the ADA did not come into being until
1990 (although similar laws that applied to agencies receiving federal
funding have been around since the early 1970's).
THanks,
ROse

* Nancy Valencia (nanzzz@...) [030605 00:19]:
I could be mistaken, but I think the difference she was referring to was
that many of the older PWN were diagnosed later in life, possibly after
college. Therefore, the way they deal with professors would have been
much different than people who were diagnosed prior to college... that's
all.
-will
--
William Norris
will@...
http://www.wirewater.org

Hello Rose,

Thanks for responding to my question. (My query was: As an OLD practicing PWN, I would like to know what the advantage is for young narcoleptics to separate themselves from those of us over 30.)

<We're not necessarily trying to "separate" ourselves from those over 30.

Sorry, I must have confused you. I just wanted to know what advantages might be. I didn't intend to imply that anyone on this group was trying to separate from the rest of the group.

<I belong to several groups on narcolepsy, including this one. The biggest reason I belong to this group is because young people deal with issues older people do not, and vice versa.

1) Everybody is different. People's bodies react to drugs in a number of ways. I encourage everyone to work with their doctors to find out what works for them. Finding out what works for other people can be helpful, but no one thing will work for everyone.

2) SSRI's are not sedatives! They do make some people sleepy, they make others hyper, they allow many more people to function at a level they could not without drugs. Also, just because one SSRI makes you sleepy, doesn't mean another will. Side note: some of the older tricyclic anti-depressants do make people sleepy. I took imiprimine for about two years (well before the onset of my narcolepsy). During this time I took it at night before I went to bed, it helped me sleep, and the drowsiness had worn off by the time I got up the next morning.

3) All the systems in your brain are likely to be connected. By taking stimulants you are effecting dopamine levels. Taking SSRI's increases the amount of certain types of seritonine available in your brain. Scientists don't know enough about the brain to say for sure what affects what and how, they just know some things work.

4) According to the information on SSRI's I was able to find on the World Health Organization's website ( www.who.int) I searched the sight for SSRI and prozac) the rate of severe side effects from the withdrawal of SSRI's was less than 0.03 per 1000, and for some SSRI's it is 0.002 per 1000 people taking the drug. While the minor symptoms some people experience when they discontinue SSRI's do indicate that by some definitions SSRI's are addictive, for the vast majority of people there is little to worry about.

5) Similarly, there have been reports of SSRI use being associated with violent behavior. Lots of people who take aspirin are violent, even more people who drink alcohol are violent, and eating too many Twinkies has even been successfully used as a murder defense. When it comes down to it SSRI's have been widely used in the last decade for a lot of reasons. Because of their wide-spread use (and I think over use in some cases) there are reports of people having trouble with them, as there are with every other drug.

6) Not all doctors are "educated" by drug company reps, if you think that your doctor is uninformed, get a new doctor. Don't be afraid to be assertive, and I fully believe in educating yourself, but a good doctor you can work with is also important.

7) I do not endorse the use of MDAD (commonly know as ecstasy). However, no reputable scientific study to date has shown any serious withdrawal symptoms or side effects. Before the drug caught on in night clubs it was used by some therapists as part of treatment. During this time no serious side effects were noted.

8) As a final note I would like to remind everyone that the internet is an unregulated source of information. A lot of what you will find is untrue or at the very least not supported by the general medical community. For example, you can find "experts" who will tell you HIV is not the cause of AIDS. They may be right, but do you want to blindly accept what they're saying? I warn everyone not to take the medical advice offered on the internet from various sources. Please be careful who you listen to, you don't want to put your life in just anyone's hands. Verify your sources. Talk with your doctor. THINK.

Nancy,

We're not necessarily trying to "separate" ourselves from those over 30. I belong to several groups on narcolepsy, including this one. The biggest reason I belong to this group is because young people deal with issues older people do not, and vice versa. For example, an older person might not have experience dealing with college professors, or similar issues. Also, young people, particularly people in their late teens or early 20's often feel more comfortable dealing with their peers for various reasons.

I wonder in turn why you are so offended by this?

Rose

Mr. Sindelar,
Thank you for you advice. Although older, your maturity is obvious and will greatly assist me in my future endeavors. Thank you again for sharing you wisdom.
Mollie

"Young" narcoleptics are forced to handle separate situations from "older" ones. As with any condition these two groups are separated regardless of other factors. You associate and relate better to those who are more similar to you. We all suffer and share a common disability and find comfort in that, one also feels more comfort to find others like them with in this group.
The issues that "those of you over 30" struggle with are those that we under 30 have not yet had to face. Hopefully when we get there dazed and half asleep you will be able to offer a kind hand. Other then the heading of the email none of the contents restrained or only directed questions to the under 30 age limit. If anyone who has any advice to offer I know I would be more then happy to receive it but coincidentally those who are handling the issues of college and thereabout are the only ones who respond to those in the same age group with the kind of support that these groups are supposed to express to everyone.
I was unaware of any dividing line but apparently you did and it greatly disturbed you. It was an honest question and this has been an honest answer, hopefully you will throw out encouraging words next time an issue dealing with a younger generation is brought up without being offended.
Mollie

Hello Everyone,

As an OLD practicing PWN, I would like to know what the advantage is for young narcoleptics to separate themselves from those of us over 30.

Narcolepsy is no respector of age, sex, race, nor does it respect any belief system.

It is an honest question and I would like an honest answer.

Nancy

i've never heard of strattera is that the correct spelling? the first thing
i ask at my yearly check up is "is there anything new any operation anything
at all? I'm willing to try anything. and about help from dogs. i have a
great dog for seven years now that we got at the pound. she is an excellent
napper when i nap for days but as soon as i have any energy she expects to
be copensated for days of sleeping by me. i try to get out with her when i
can otherwise the kids next door play with her in our big yard. she won't
walk without me however, and when we walk she does seem to realize when she
needs to pull me home becasue i'm losing my energy. she is good about when
i have a fall to just stay by my side and not freak out or lick my face and
just let me focus until i can assure her i'm okay. i don't get out a lot
but when we do go out, since it is usually with my husband, my friends know
about my problems and if i say i need to leave there is no debate or
questions about if i really need to leave now. my social life is certainly
not what it was but choices have to be made and i went through a few years
of saying "waste of awake time" about a lot of things. i never say it
anymore since i worked so hard to get to where i don't waste it. i just
don't have 24 hours in a day like most people. i sleep more than i'm awake
and nap about every two hours even when i'm at my best with the medication
working and that is not close to half the time. i've worked hard to make
the most of my life and am grateful for my husband who is the only person
i've met that doesn't give me grief for sleeping. my family has never been
able to understand this and that is why two out of three siblings will not
be tested even though they show many signs of narcolepsy. one finally went
when they were testing provigil and she was paid. mikey

While at age 62 I am far from being a young narcoleptic, I am most familiar with the problems experienced during high school and college. Tomorrow I host the 40th reunion of my college fraternity brothers that stirs up memories now both humorous but still painful. During my career years, I was a high school guidance counselor specializing in college counseling. I am still in contact with many colleagues and would be happy to advise anyone regarding selection of post secondary schools.

The recent posting of William Norris regarding the establishment and documentation of one's condition with any institution is most sound advice. How the administration and support personnel respond might give you a clue as to how you will be treated by others at that school. However, sometimes just establishing a positive relationship with each teacher at the beginning of each course can go a long way in providing an accepting environment.

Other options to consider might include attending a local community college or nearby college or university that would allow one to take a lighter load of classes and utilize public transportation. Personally, I switched to a major where I could more easily compensate and that has been a move that I have always regretted.

One important note of caution would be bluntly to state that regardless of where you attend school, no narcoleptic should ever consider the party scene involving alcohol or other substances. Through the years I would have to state that those narcoleptics I have known who have imbibed have suffered for it disproportionately. Just consider that in order to stay awake a narcoleptic must cope with a disrupted sleep pattern and take powerful medications that include antidepressants. Alcohol and other recreational substances are depressants and using them at all is suicidal.

Perhaps Brian of Y.A.W.N. can provide a rehash of some of the best discussion threads on Y.A.W.N. in the past as a jump start for future efforts. I believe that Bob Cloud of Narcolepsy Network would be most supportive of efforts in restarting this important forum. Early diagnosis and support for narcoleptics is crucial in coping with the disease.

Jim Sindelar

"Do not flush while train is in station."

My understanding is that chronic fatigue will make you very very tired. So
you might want to try talking to other people daignosed with chronic
fatigue or to a doctor who treats other patients with chronic fatigue.
Anyway, my referal to the sleep clinic was made by a neurologist.

hey mollie,
i was at Georgia Tech for two years, and though they hadn't dealt with N
very much (only 1 other student with N while I was there that I know
of), they were more than helpful. The disability office had me take a
letter to each professor for them to sign informing them of my condition
which provided me a chance to explain what it was and answer any questions
they had. Then during the year if I missed class b/c of my N, I would
contact the disability office and they would inform my profs. I only
had one class w/ mandatory attendance and he was very understanding, so
it worked fine.
For dorm life, they provided me with a special alarm clock that is
actually made for the deaf. When my regular alarm goes off, it would
flash a really bright strobe, vibrate this little device i put under my
pillow, and optionally add an additional beeping sound. Granted my
roommate didn't like this too much, but it worked great for waking me up
enough to take my meds. Unfortunately they were only able to loan it to
me, as I believe the device costs something like $1600 (though I imagine
you could build one for under $100 - one of these days i may try that)
This past year I was at a very small (50 students) college and they were
not as helpful. The dean of students didn't seem to catch on how
dabilitating it can be at times and didn't inform my teachers how it
could affect my attendance. I did great on assignments, but my grades
suffered greatly b/c of the attendance policies.
The main thing is to just make sure and provide documention from your
doctor of your diagnosis and how it affects your daily life. Most
schools will not be much trouble and if they are, you've always got the
ADA on your side :)
-will
* maltballs803@... (maltballs803@...) [030603 19:14]:
--
William Norris
will@...
http://www.wirewater.org

Hello! Im 17 and was just recently diagnosed narcolepsy after begging my doctors to give me a sleep test. They tried everything trying to figure out what was wrong with me. I only had cataplexy at first so that threw them off but sure enough everything from the hallucinations to collapsing happened. Im a senior in high school and I would love to know any advice about college since ill start looking into what I need. Things like a large school compared to a small one, how was dorm life considering you had to sleep all the time, and how to present my situation to schools that im interested in. I would really appreciate anything. Also I think that if YAWN could get up and running again it would benefit me and others who are dealing with the same problems such as driving, colleges, and trying to get a job. If any more information comes up about it please keep me informed. Thanks.
Mollie

Hi Will and Courtney,
I just found this site today. I'm 23 and was diagnosed this year,
although I really wish that I'd known what was going on during
college. Good luck to both of you (and anyone else reading this) with
dealing with this and being in school. Somehow I made it through, but
without a diagnosis it was pretty hard to convince professors that I
was interested in their classes, but just couldn't wake up for them
or stay awake during them.
Anyway, I would be very interested in helping to get a site up this
summer. I don't know too much about web design, but I think a forum
for young adults is necessary and would be willing to help in any
way. Will, feel free to email me directly about ways that we could
get the ball rolling on that.
Good luck to everyone,
Melinda
P.S. As I was getting diagnosed, I almost lost my job and have
learned lots of ways to get support in the workplace. I used the ol'
Americans with Disabilities Act and now can take naps when I need to.
As a young adult, entering the workplace is hard enough, but with
narcolepsy, it's easy to reinforce all the stereotypes of young
people that bosses may have (i.e. lazy, irresponsible, parties too
much), so I would be into setting up a page on the site about working
with narcolepsy. OK- speaking of working- better go ahead and do
that. :)

Has anyone tried the new medication Strattera?

No, I have a moustache and beard like you.
JT

Hello Mikey,

Thanks for answering my questions. It seems you have a "double whammy." Since your doc is at Stanford, it seems that you are getting good medical care. And it sounds as though you have great support in your husband.

I've whacked my head a couple of times when having C attacks. So far, I haven't been seriously hurt--just sore. Yeah I've slid down walls and the side of furniture. If I can grab onto something, I recover quicker. You might try my technique of "focusing," that is, concentrating on an imaginary spot about a foot in front of your nose. Your eyes might be closed, but you can still concentrate on the "spot". Block out all noise in your environment. Say to yourself, I must recover. I need to recover now! Don't make any attempt to answer anyone who asks, "Are you all right?" Momentarily, forget they exist! Recover NOW, explain later!

One of the best things I've ever done for myself was to get a dog. Although I had other dogs before, Lila is the only one I've trained to help me. We went to obedience school for 70 weeks and I trained her to specifically pull on her leash when I said "CAT!" It meant I was having cataplexy, but Lila responded naturally and gave me positive tension to keep my hiney off the sidewalk! Also, obedience school training taught her to stand/stay so that I could lean on her when I was having C. I taught her to find my shoes--because I'm always forgetting where I leave them. I've taught myself to keep my keys in my purse, but I could have trained her to retrieve my purse, or my medicine, if I had that necessity. She is my service dog who is now in semi-retirement at the age of nearly 13. She's a chow/lab mix. I recommend the black labs and yellow labs. They are smart and friendly. German Shepherds also make good service dogs. You can take a service dog anywhere you
need to go. I originally got Lila so that I would have to walk instead of being a couch potato. There are many things a dog can do to assist a person with narcolepsy. You don't have to get a pricey, leased dog from a professional trainer. (Lila was 11 weeks old when I found her at the Humane Society.) You can get a dog at the pound, take it to obedience school and train it to assist you. For more information, go to the following url http://www.deltasociety.org

I'm going to get another dog--a pup--soon so that Lila can help me train it before she gets much older. I'll use a harness and a leash on the new dog. We really enjoyed obedience school. It was great to socialize with people and fur persons. (Narcoleptics NEED a social life!) Several years after we had been in obedience school, we went through the AKC Good Canine Citizen trial and we passed. The recognition brought an invitation for her to become a therapy dog. I didn't register her as a therapy dog because she was already giving therapy "at home." We lived in a highrise for the disabled and elderly. Yes, I allowed others to pet her. She loved it and they loved her.

For me cataplexy is by far the worst symptom of N. I keep the EDS under control with medications. However, EDS, is unrelenting. I'm thankful that I can now nap at will (and so can Lila.)

Take care of yourself, Mikey.

Nancy

Oh, my! Amphetamines can be down right lethal for a person with a heart problem. Yikes! I would follow her advise and get the differential diagnosis asap.

Yes, I teach primary. For years I slept in the nurse's office after school when the staff had mostly gone so that I would not crack up my car on the way home. Being a kindergarten teacher, the few times I was "noticed" folks thought it was cute and figured anybody teaching kindergarten would require naps. I have found that if I just don't sit down I can stay awake, per se, although I am sure my bouts of limp cheek and brain fog would alert the adult world so I remain an anonymous narcoleptic in my job.. Now, this requires maintaining meticulous sleep hygeine at night to have this kinetic strategy work. If I did not take such good care of myself.... If I go to bed at night past 10 I could never maintain this. I do NOTHING in my bed or bedroom but sleep. I gaurd my night time sleep very carefully.... unplugging my phone from the jack. I manage to stay awake by not just "not sitting down" but by staying kinetic ...... I literally never stop moving. Kindergarten makes
this easy. Also, there is absolutely NOTHING boring about my grade level. I also turn on lively Irish Dance music and have a sink in my room for running icy water over my arms and face. I have a problem with swelling legs so I was able to ask my principal to get a nurse's cot placed in an unseen place in my classroom. I use it backwards and place my feet elevated on the part that would ordinarily elevate the head. I do this when the kids are at gym or music or between my morning and afternoon classes. It is waaaay in the back of the classroom ... behind cubbies in a large storage area where I would hear the clicking of heals and be alerted to anyone entering my room. I also have cow bells on my hallway door for those who might be wearing slippers. My "controlled daytime naps" have made it a lot easier. I must say, though that this is not as necessary in recent months since my bone marrow infusion of iron took care of a SEVERE and previously non-responsive condition
of iron-deficiency. I still need my nap late in the day but have not had to sleep on the side of the road in my car since then. I can often wait to take the nap even after driving home. I am an unusual narcoleptic, it seems, however, because I do have a very "hyper" personality when not sleeping. I can be in jovial chatter with a friend who can leave to go into the kitchen to get something out of the microwave and be "out" before she returns. I never appear "sleep." It is like I am "on" or "off," like a switch or something. I realized this after joining a narcolepsy support group, however, it is perfectly normal to me as I have been like this as long as I can remember. I did, however, always secretly and privately wonder if I was a little "touched in the head" because I would always hear a train or people arguing just as I drift off to sleep. As difficult as my narcoleptic diagnosis was, I sure am glad it is that instead of MS (cataplexy) or hallucinations as
would be observed in a scitzofrenic (hypnogogic). I also occassionally get "knives" coming at me or "shadows" of people who are not there in my peripheral vision.... this was very disturbing to me as a teen ager when I was your typical over-reactive mellow dramatic adolescent, but have grown accustomed to it with age. I was really relating to that guy in the movie about that college professor at Harvard who was diagnosed scitzophrenic and they showed him attempting to "ignore" the people in his hallucinations ... continue his conversations with "real" people while struggling to maintain his focus on what was really there. I chuckled as I saw the movie.... while mine were never as ineractive as his, I do know what it is like to attempt to "ignore" scary stuff and "maintain" your composure. Also, nobody was ever "talking" to me in my 2 or 3 second long hypnogogic hallucinations. They only happened a dozen times or so in middle of the day... mostly it is just as I am
trailing off to sleep at night.

Hello Rich or Michael,
After having the tilt table procedure, and finding out that you have some sort of heart ailment, do you still have symptoms of narcolepsy? There is a tremendous difference between having cataplexy and passing out. Cataplexy is merely a loss of voluntary muscle tone while what you were experiencing was passing out--a loss of conciousness probably due to lack of oxygen when your heart stopped beating. Do you now wear a pacemaker or what? What is the name of your heart condition? The heart problem could be the underlying cause for EDS. (EDS is a symptom in many disorders, not just in N.) It is entirely possible that you were misdiagnosed with narcolepsy when in fact you have a heart problem. If so, your heart problem should have been diagnosed a long time ago. Are you now taking meds for EDS in N? Do you have a physician who is a cardiac specialist? If not, please get such a specialist. This is not something you can delay doing. Nothing about narcolepsy is life
threatening, but what you've described sounds like you need better medical care than what you've received in the past.

Nancy Valencia

Beth, Good thinking!

i got my narcolepspy diagnosis in my mid twenties although tests taken all
through my childhood and teen years when looked at later showed it already.
it took longer for my heart condition to be diagnosed since it has similar
qualities to narcolepsy. when my heart stops i fall and we thought it was
part of the narcolepsy. the tilt table test helped my heart diagnosis but
was without doubt the worst test i have ever had performed on me and i've
had them all. i can't say i would ever again take the tilt table test. it
was horrid to purposely bring me to passing out when that was what i hated
doing the most. uggg.

Howdy!

This is going to be long....before i get going, may I suggest that you visit the many wonderful N sites online.....here is my favorite, www.talkaboutsleep.com

Narcolepsy (N) is a chronic sleep disorder. The main characteristic of N is excessive and overwhelming daytime sleepiness. A person with N is likely to become drowsy or fall asleep at inappropriate times and places. Daytime sleep attacks may occur with or without warning. Sleep attacks may be irresistible and may occur repeatedly in a single day. Note, these symptoms are rarely seen in children.
Narcoleptics may experience other symptoms. Excessive Daytime Sleepiness (EDS), Cataplexy (C), Sleep Paralysis (SP), Hypnagogic Hallucinations (HH), Automatic Behavior (AB), Disrupted Nighttime Sleep (DNS), Microsleeps (MS) and others. Children rarely manifest all 4 symptoms.
Cataplexy (C) is a temporary decrease or complete loss of muscle control triggered by a strong emotion such as laughing, anger, or surprise. It can range from a weakness in the knees to a complete "rag doll" collapse to the ground. Though conscious and aware of their surroundings you are essentially paralyzed. The frequency of C varies from person to person and they usually does not last more than a few minutes.

Cataplexy is seen in about 70% of patients with narcolepsy, and its presence with excessive daytime sleepiness strongly suggests the diagnosis of narcolepsy Specific historical question concerning cataplexy are required.
Sleep Paralysis (SP) is a brief loss of muscle control that occurs as a person is drifting to sleep or awakening. While somewhat aware of their surroundings, they are unable to move or speak. It is often accompanied by hallucinations.

Normal sleep paralysis occurs during REM sleep in normal subjects.
Hypnagogic Hallucinations (HH) are vivid dream-like images and sounds that are experienced at sleep onset. These images can be very frightening. Emotions that can accompany these images are fear, anxiety, and dread.
Automatic Behavior (AB) is when a person performs tasks and activities while awake and without recollection of the event. Essentially, it is a "black out" during wakefulness.

A Microsleep (MS) is a lapse from wakefulness into sleep (stage 1) that lasts just a few seconds. Characteristics of microsleeps include repeated yawning and/or difficulty keeping ones eyes open. Memory formation is usually impaired during microsleeps.
Disrupted Nighttime Sleep (DNS) A person may awaken several times throughout the night or awaken and remain awake for long periods of time every night.
Other symptoms are: Weak limbs and general weakness, Depression, Inability to concentrate, Confusion, and Shortened attention span.

Diagnosis Of Narcolepsy

Polysomnography (PSG) is a diagnostic procedure used to determine many sleep disorders. It usually involves an overnight stay in a sleep lab. The study records a multitude of information such as respiratory air flow, blood oxygen saturation levels, heart rate, muscle activity of legs and chin, sleeping positions, eye movement and the electrical activity of the brain.

MSLT or Multiple Sleep Latency Test is a diagnostic procedure also performed in a sleep center. It is usually performed the morning after a polysomnogram when there is a need to measure the degree of daytime sleepiness (during the day). This study involves a series of 4 or 5 naps at two-hour intervals and the recording of how long it takes to fall asleep. It is also used to diagnose other types of sleep disorders, such as Narcolepsy and Idiopathic Hypersomnolence.
When both EDS and C are present, N is likely to be the diagnosis. However, a PSG and subsequent MSLT study is still required for the diagnosis to be made.
A diagnosis of N is made when the individual's average mean sleep latency time (the time it takes to fall asleep) is under 5 minutes and they experience sleep-onset REM (SOREM) periods in two or more naps during the MSLT.

A board certified sleep doctor is one who is specially trained in sleep and sleep disorders. They are usually Pulmonologists or Neurologists, but not limited to those specialties. You can find a list of sleep docs in our Directories located in the Sleep Disorder Information page or in the EASY REF GUIDE located in the left nav bar in the chat room.

Diagnostic Criteria for Narcolepsy

1. Complaint of excessive sleepiness or sudden muscle weakness.
2. Recurrent daytime sleep episodes for at least 3 months.
3. Cataplexy: sudden loss of muscle tone
4. Associated features: Sleep paralysis; hypnagogic hallucinations; automatic behaviors; disrupted major sleep episode
5. Polysomnographic findings: sleep latency <10 minutes, REM sleep latency <20 minutes; MSLT findings: mean sleep latency <5 minutes, two or more sleep-onset REM periods
6. HLA-DR2 positivity
7. Medical or psychiatric disorders and other sleep disorders are not the primary cause of symptoms
Minimal criteria: 2+3 or 1+4 + 5+7
(From The International Classification of Sleep Disorders: Diagnostic and Coding Manual)

Lots to soak in.....and as we all know, nothing is as black and white as appear here....if I had to pick the one most important thing that I have learned over the years about N, is that each persons N symptoms are just as individuale as they are.

IBC
tayeli7 <tayelismiles@...

Hi everyone,
I am wondering what tests ar done to diagnose narcolepsy.
I was diagnosed with arnold chiari Malformation in 2001. If you
haven't heard of that, it is a hindbrain malformation where the lower
part of the brain, cerebellum, specifically, the cerebellar tonsils
prtrude downout throuh the skull and into the spinal canal. the
compression of the brainstem obviously causes many horrible symptoms.
After my diagnosis, I was given a tilt table test which also
diagnosed me with CFS, which definately is underlying symptom of
chiari.
I literally could sleep 24/7. I always feel completely exhausted as
if i had been awake working for days. It's bad.
I have been without medical treatment or insurance for a year now but
am finally insured once again.
I went to a PCP who thought she was a chiari expert, and so i havent
went back. Eventually, I will go on a search again. I am fed up wth
the general doctors, which is a long story.
Can you tell me exactly what is narcolepsy? I have alays understood
it to be wher one falls asleep and doesnt even realize it. Is this
true? I have yet to do that one.
thanks for your time,
stacy in Ohio http://www.angelfire.com/oh4/tayeli

Hello Everyone,

I've been posting off and on from message 78 on this list. The archives, which are readily available, contain much valuable information including the experiences of other PWN, coping skills, and links to documents and websites. The first thing I do when I subscribe to any group is to take a look at the archives. I suggest that everyone take a look at the archives on this list. You might find an answer to a question you might have.

I've reposted a couple of my previous messages about SSRIs. I ask that everyone seriously consider what I've stated in these previous posts. I didn't write them to exercise my fingers on the keyboard, but because I have serious concerns particularly about SSRIs prescribed for my fellow PWN. When my N was diagnosed in 1969--1969--there were no medications available to control cataplexy. I learned to deal with it. Mine is moderate to severe. I learned control techniques. As I've previously stated, one of my docs prescribed 175 mg per day of Dexedrine Spansules. (A spansule is a time release form of Dexedrine.) It controlled my EDS and my cataplexy nearly disappeared. Although I wasn't having any problems with the medication, a new neurologist was concerned about the amount of Dexedrine I was taking and asked me to get a second opinion. The second opinion resulted in the neurologist prescribing 45 mg per day of Dexedrine tabs. I got the same results EDS-wise as I
did with the 175 mg of time release Dexedrine Spansule, but my cataplexy surfaced again. I was already familiar with the phenomenon and continued my life using control techniques I had learned previously. I was glad to change from the spansules for tabs for economic reasons. For many years I paid for meds out of my pocket. Tabs are so much cheaper than spansules. And because I was concerned in those days about long term effects, I accept the use of the tablet form. MY POINT IS THIS: if you can get enough EDS MEDICATION, RITALIN, DEXEDRINE, OR DESOXYN, CATAPLEXY IS ALSO CONTROLLED.

Then in the mid 70s when my neurologist told me that Tofranil (imiprimine) was prescribed for PWN for cataplexy control, he prescribed the medication for me. I was leary about taking it and didn't bother taking the prescription for quite a while. When I started taking the imiprimine on a daily basis, I became confused, foggy headed, and sleepier, but it did control the cataplexy. Then I received an after hours call from my neurologist who had been reading medical journals. It seems a theoretical conflict between Dexedrine and imiprimine had been reported in the medical literature and that the conflict raised the blood pressure. He asked me to get a blood pressure cuff and monitor my bp. There was no difference in my bp, but my doc's after hours call caused me to wonder if taking imiprimine was such a good idea. After all cataplexy appears at random. I already knew that I could go for days without having attacks. So I decided to start taking it only when I
anticipated being in a social setting, before going swimming, or if I had severe attacks. TAKING IT ON AN AS NEEDED BASIS WORKED AND CONTINUES TO WORK TO THIS DAY. I had to take more Dexedrine to overcome the sedating effects, but I was cataplexy free so that I could have a social life. In between time, I put up with C's random occurances. I would rather deal with C anytime than to be confused, sleepier, and foggy headed in addition to having to take more Dexedrine.
These days I don't take more than 10 per YEAR! I don't believe anyone really knows how the tri-cyclic antidpressants work to relieve cataplexy but, I'm glad I have "my little helper" available. I don't like taking meds because they affect ME where I LIVE--my brain.

Now, why should I be concerned about what YOU take? I believe that I'm old enough--at 57 I knew the trees when they were sapplings--and have had a sufficient amount of experience as practicing narcoleptic that you should at least consider what I have written. (I am the voice of experience. If anyone knows where I can get some widsom, let me know!) Ultimately YOU, not your doc and certainly not myself, are the one responsible for putting meds into your mouth. When my N was diagnosed I HAD NO INFORMATION!!!! How much more fortunate YOU are to have access to books and to the internet. It is wise to read, read, read and learn as much as you can about what meds do to the brain. I stand firm: SSRIs are damned dangerous medications. The information is pouring in and has been available since about 1994 about the SSRIs. BE AWARE THAT DOCS DON'T KNOW--THEY DEPEND ON PHARMACEUTICAL SALES PEOPLE TO "EDUCATE" THEM!! WHAT IS THE BOTTOM LINE TO THE MANUFACTURERS? YOUR
HEALTH? LOL!
I was passing by and my brother called me in
And he said to me "Better take time in life,
Better take time in life, Better take time in life,
For you've got far way to go" (An African folksong)
Subject:
THE SSRIs and use by narcoleptics: LONG POST
Date:
Wed, 06 Nov 2002 00:55:30 -0600
From:
Nancy Valencia <nanzzz@...
To:

I apologise for the duplicate message.

Does anyone take Welbutrin or Effexor for cataplexy?
I take both for other issues. They're anti-depressants, but not SSRIs. I'm
22 and have developed N since I've been on them. So far I haven't
experienced cataplexy, but my doctors (one of whom is narcoleptic himself)
aren't sure if this is due to the Welbutrin and/or Effexor or if I'm just
lucky so far. If anyone knows anything about this I'd love to hear about it.
I'm interested to know if they might be inhibiting the cataplexy, I can't
stop taking them to find out. I'm also somewhat worried I might start
exhibiting cataplexy in the future (which I know is unpredictable).

Hi All.
I just wanted to reply to Nancy about her comments. While I respect your
experience with N, I want to clarify some things. First of all, every
situation is different.
While I think that SSI/SSDI is great for those who are so dysfunctional that
they can't hold any type of job, I can tell you from watching the process as
a mental health case manager that it's something to be avoided if at all
possible.
First of all, like Nancy said, the social security application process to
get approved does take from 18 months + to get approved. The people I
worked with were either homeless or living with family until they were
approved.
I've watched my friend who is disabled due to a mental illness struggle with
boredom, the inability to make money even when she is well, because of
limitations on the amount that you can make, and struggle with depression
because she doesn't have the money to do the things that our doctor friend
and I can afford to do.
Now, I'm not knocking SSI/SSDI if you HAVE to do it. I'm just saying, I
don't want to live in poverty for the rest of my life. And applying for
this is essentially what you are doing. I'm just keepin' it real, okay
folks?
Also, what is the deal with your opinion about anti depressants being
dangerous? (Please don't take this as an attack, I just want to understand
where your opinions are coming from.)
All drugs can be dangerous. I can't imagine living without mine, b/c my
cataplexy is 100% gone with 20 mg of Celexa a day. Quality of life is what
we are seeking, and that's going to be different for everyone.
About the idea that provigil won't cut it. Like I said, meds work
differently for everyone. Blanket statements don't help.
If people w/ N can't work full time jobs, it's an option to look into home
based businesses, or working part time. I do agree that work increases self
esteem, and I do agree that getting as much education is a good idea
(disability services is supposed to help, but they were lousy in my
experience.)
But on top of this, it's important to remember that the National Institutes
of Mental Health has made chronobiology (study of sleep and the body clock)
it's number one priority. And a cure is likely in the next several years.
DON"T GIVE UP HOPE! We are on the way...
Peace,
Beth

Hello Zef and Everyone,

In 1997at age 51 I applied for SS disability and after 14 months of living on nothing except food stamps, the generosity of others, and God's grace, I began receiving SSI in late 1998. I'd worked since I was 16 but I didn't have enough quarters in the last 10 years of work to receive SSD. In order to get SSD a worker must have 20 quarters of work in the immediate last 10 years of work prior to filing. SSD amount is then based on earnings. If a person receiving SSD didn't earn enough to get a standard amount, the rest will be filled in with SSI. Because I hadn't worked 20 quarters in the 10 years previous to filing, I was automatically placed in the SSI category. The amount is now a whopping $552 per month and I have Medicaid which pays for medicine and other medical needs. CAN YOU AFFORD TO LIVE ON $552 per month? It is difficult at times for me to pay my bills and buy groceries. Since getting SSI I don't get food stamps although I am eligible. I simply don't like
to have to beg for them. Every three months I would have to reapply. I hate dealing with paper work. The cost of living is going up and I may have to reconsider. In 1998 I would have received $15 in foodstamps, and now the amount is probably $40 worth. If I took a part time job, for every dollar over $69, I would have to pay half of it back. My disability claim was approved because I had narcolepsy and the fact that I was "near elderly." I applied because I was so fatigued and thought my narcolepsy had become worse. As it turns out, my narcolepsy hasn't changed and my meds still work, but I have another underlying condition, hypothyroidism. I take supplements and feel a lot better, but not quite enough to return to work, but I'm thinking about going back to work and telling them to shove their pittance you know where.

Yes, persons with narcolepsy are eligible for SS disability. The case which established that was Winans v Heckler in 1986. If you need to apply for SS (either SSD or SSI), you should contact Narcolepsy Network and ask for the SS claimants file.

Remember that filing and getting SS disability is a PROCESS: File, get turned down; appeal, get turned down; engage SS Claims representative--an attorney--who will file and send the case before an adjutant judge. Usually, the narcoleptic will then get SS disability. The SS Claims representative will charge you 25% of the "back pay" from the time you filed until the case has been approved by the adjutant judge, but if the adjutant judge doesn't approve the case, you and the attorney can appeal that decision and the attorney won't charge until you get approved. The longer you wait (from the time of filing)--while living on practically nothing but air, the more the attorney receives.

I've always encouraged young narcoleptics to work as much as possible. Why? Work builds self esteem and adds to your bank account. You can earn as much as you set your mind to earning.

My advice to PWN, especially young PWN, is to get control of the EDS with proper medication. (Sorry, kids, Provigil ain't gonna do the job.) Insist on the doc writing prescriptions for enough EDS medication so that you can work without having to nap, get yourself to and from work, and have a life outside the workplace. (Narcolepsy is treated to the level of comfort. Who decides that? YOU DO not the doc.) Avoid anything of sedative nature including antidepressant meds. Unless your C is especially difficult, avoid taking them. (The SSRIs are damned dangerous to be taking in the first place. Get off of them!!!) Strive to be as normal as possible. (Hey! I must be doing something right. My N meds work after 33 years of taking 'em!)
Get as much formal education as possible. Go with your heart, but keep your narcolepsy in mind.

Get a salaried position where you can control the hours you work. Work as much as possible and DON'T apply for SS disability unless you absolutely have to.
What I've written above is my standard advice which I've been giving since I began reaching out to my fellow PWN in 1989. In the last two years I've seen incredible changes in "society" for the lack of a better word to use in this public list. The changes are worse than anything HH could conjure up. The changes are so negative that I'll not mention them here nor will I tell you how my advice to young narcoleptics has changed. If you contact me personally, I will give you my advice and give you information so that you can make the best choices to survive.
Nancy
PS. Zef, I sincerely appreciate the information you have posted. Your heart is really in the right place.

I wanted to post this information in case anyone finds it useful.
My roommate has chiari malformation, among other things, and has had
to file for SSI, SSDI, and Food Stamps. While at the interview, she
was chatting with the guy and somehow I came up in conversation.
The middle of the conversation went something like:
Guy: "Oh, but *she* doesn't have anything wrong with her..."
Roommate: "Yes, she does, actually, she has Narcolepsy with
Cataplexy."
Guy: "Well, she should file for disability!"
Now, I know what you're all thinking. My gosh, Zef, you work 3 jobs
and go to school. You're not disabled!
Well, not right now, but here's what this guy said: Even if I'm not
disabled by my condition now, by filing with Social Security, etc.,
even if I get turned down, I'll be starting the documentation
process so that if/when I do become disabled by it, it's not just
out of the blue. He said that it's the opposite of what everyone
thinks: the earlier I do it, the easier it will be for me to get
help later in life.
Isn't that just fascinating?
So, my roommate (who's excited about her brilliant plan) is going to
help me get a protocol letter from my doctor that briefly lays out
what my condition is and what to do when I have an attack, etc. It
will also include what medications not to give me (to establish that
I'm not drug seeking) and then we're going to so something with that
letter, but I'm fuzzy on the details. Hey, it's *her* plan! I hate
going to doctors. I'd rather tough it out, but I realize that's
probably not going to work forever, so I may as well cover my butt
while I can. :P
Zef

Awww...the golden rule of N....you can't hide and you can't beat it! It will find you in the end. One needs to learn to live with it and actually allow it to have some control over your life, simply because it does. One would totally exhaust themselves fighting N all the time.

When I first met my best friend (a PWNw/C also) she used every ounce of energy she had to fight her sleep attacks and C. The results were that her symptoms were actually far worse then they are now that she just kind of rolls with the flow. She would fight so hard that she would instantly fall asleep without any warning at all, which we have all done no doubt....but this was a daily thing for a long time. To top it off, her children were frightened by her C attacks.....fearing that it was hurting her in some way I think.

Today, they all live in peace...well as much peace as you can find with N/C, but it took some real changes in their lives and most of all acceptance.....

IBC
krazzzzzzz <ray42day@...

Hi, my name is Kerry. I was actually dianosed with Narcolepsy and
mild Sleep Apnea in July of 2001, but had switched GPs shortly after
the studies and was never informed of the results of my polysonogram
or MSLT until about six months ago when I requested my medical
records! I shared the diagnosis with my new GP and she referred me
back to the sleep center for re-testing. My results were identical
to the results from the 2001 study. The longest time it took me to
reach REM sleep was 2.3 minutes in both tests (Thats 10 naps over 2
years!). I have been struggling with a myriad of health problems for
about three years now. I have been diagnosed (or misdiagnosed in
some cases) with asthma, gallbladder disease (taken out 5/2000),
fibromyalgia, chronic leukemia, hypothyroidism, and about 20 other
terrible disorders. I have gained 120 pounds. I am tired all the
time. In 2001, I decided that my GP and the list of medications I
was taking daily were not doing me any good. I stopped taking all
but the asthma medication (which actually improves my breathing) and
began interviewing GPs until I found one that I was comfortable
with. I noticed immediate results from stopping the meds - many of
my symptoms turned out to be side affects, but I was still tired all
the time. I work in public relations and marketing. It's funny,
when I am backed to the wall with deadlines and unable to get a break
I do better than when things slow down. I am ALWAYS tired. I used
to drink about 2 gallons of soda a day! I quit caffeine cold turkey
two weeks ago. I also smoke. For a short time, it seemed to help
with the sleep attacks (the nicotine and outside air snapped me out
of the "stupor"). I am planning to quit that, too. Narcolepsy has
financially and socially impacted my life also. For the last three
years, I go-go-go, and then I drop. I usually make it a couple of
months in a row working between 40 and 60 hours per week. Make no
mistake, during these times work is ALL I do, then I come home and
crash. Needless to say, the rest of my life suffers in this process.
After a couple months of this madness, I literally shut-down and
cannot function for 5 or 6 days at a time. These crashes has become
distressing to my employer, my friends, my family, and, oh yeah, to
ME! I started taking Provigil a month ago, I had 2 of the best weeks
I have had in years! The first day, I worked a full shift, came home
and mowed my lawn, played with my dogs, read a few articles, watched
a home & garden program and went to bed at 11! The rest of the two
weeks was similar. I thought I had it whipped. I was so excited to
have my life back. Then in week 3, I crashed. I slept 15 to 20
hours a day for 5 days. I went back to the sleep clinic and the doc
switched me to Ritalin. I asked him if he could take me off work for
at least a week to see how I would do on this medication. I am
beginning to sense that my employer is loosing patience with me. The
doctor took me off. The Ritalin made my ears ring terribly, gave me
a really bad headache and I swelled all up. I stopped taking it and
go back to the doc on Thursday (He told me to take the Provigil until
then). Does anyone have any suggestions for me? (Medication, doctor,
work, coping-related). I could use some support. I think I have
tapped my family and friends out... Kerry

Howdy!

I once heard that being a teacher (primary age) was about the best job a PWN could get......and I guess if you think about, they do have a good point. I know though, that it would still be a struggle for any PWN to hold down a teaching position as well as any 40 hr job!

Are you considering becoming a teacher?
peterjames122002 <krwilson@...

Does anyone teach in a school ? How often do you sleep and where ?
Peter

thing is i cant even "think"
let alone write
u guys have my condition
so u know wot im talkin about
hate this stuff
dunno wether to curse things or to thank god its not something far
worse.
i dont want to fall into hatred
blaming my family the culprit
after all it is something trigger by some "shock" - immune system
attacking the brain
we did have a pretty lousy/stressful childhood
so on moments like this - pretty easy to indulge in anythin negative
and feed into hatred (ive given up on despair)
have to be strong
will be strong
shit aint gonna cry
got to go now - take care all

Hi Kerry,
It took courage to share your story. The first thing I would do is get you
and your family involved in a narcolepsy support group. It will help you
meet others suffering with the same problems that all of us face, and will
give your family more insight into the realities of daily living with this
disorder.
It is difficult finding a balance with narcolepsy, because most of us have
to focus on making a living to survive, and important things like
friendships, social activities, hobbies, etc. get put by the wayside in
order for us to keep going. A support group will help with this. Also,
individual therapy with a social worker or counselor who has medical
knowledge would be beneficial.
You mentioned weight gain. I know exactly where you are on that! Have your
new GP check you for endocrine disorders. I know from my own research of
the literature that many narcoleptics deal with diabetes or insulin
resistance (pre-diabetes). Exercise has done wonders for my attitude and my
physical health. I was able to find a personal trainer that I meet with
once per week (subsidized through our county parks dept.; otherwise,
probably couldn't afford it.)
If you live in the United States, you should be covered under the Americans
with Disabilities Act, but I don't know what other options there are outside
of US. If you have any friends who are lawyers, it wouldn't hurt to have a
talk with them about options in case you do get fired. BUT I would
DOCUMENT, DOCUMENT, DOCUMENT everything that goes on between you and your
employer that leads you to believe that you might be fired. I would also
bring your employer info about narcolepsy, and let them know that you are
under a doctors care. I'd be cautious about revealing too much info to your
employer, though.
Hope some of this helps,
Best of luck,
Beth

Does anyone teach in a school ? How often do you sleep and where ?
Peter

Hi, my name is Kerry. I was actually dianosed with Narcolepsy and
mild Sleep Apnea in July of 2001, but had switched GPs shortly after
the studies and was never informed of the results of my polysonogram
or MSLT until about six months ago when I requested my medical
records! I shared the diagnosis with my new GP and she referred me
back to the sleep center for re-testing. My results were identical
to the results from the 2001 study. The longest time it took me to
reach REM sleep was 2.3 minutes in both tests (Thats 10 naps over 2
years!). I have been struggling with a myriad of health problems for
about three years now. I have been diagnosed (or misdiagnosed in
some cases) with asthma, gallbladder disease (taken out 5/2000),
fibromyalgia, chronic leukemia, hypothyroidism, and about 20 other
terrible disorders. I have gained 120 pounds. I am tired all the
time. In 2001, I decided that my GP and the list of medications I
was taking daily were not doing me any good. I stopped taking all
but the asthma medication (which actually improves my breathing) and
began interviewing GPs until I found one that I was comfortable
with. I noticed immediate results from stopping the meds - many of
my symptoms turned out to be side affects, but I was still tired all
the time. I work in public relations and marketing. It's funny,
when I am backed to the wall with deadlines and unable to get a break
I do better than when things slow down. I am ALWAYS tired. I used
to drink about 2 gallons of soda a day! I quit caffeine cold turkey
two weeks ago. I also smoke. For a short time, it seemed to help
with the sleep attacks (the nicotine and outside air snapped me out
of the "stupor"). I am planning to quit that, too. Narcolepsy has
financially and socially impacted my life also. For the last three
years, I go-go-go, and then I drop. I usually make it a couple of
months in a row working between 40 and 60 hours per week. Make no
mistake, during these times work is ALL I do, then I come home and
crash. Needless to say, the rest of my life suffers in this process.
After a couple months of this madness, I literally shut-down and
cannot function for 5 or 6 days at a time. These crashes has become
distressing to my employer, my friends, my family, and, oh yeah, to
ME! I started taking Provigil a month ago, I had 2 of the best weeks
I have had in years! The first day, I worked a full shift, came home
and mowed my lawn, played with my dogs, read a few articles, watched
a home & garden program and went to bed at 11! The rest of the two
weeks was similar. I thought I had it whipped. I was so excited to
have my life back. Then in week 3, I crashed. I slept 15 to 20
hours a day for 5 days. I went back to the sleep clinic and the doc
switched me to Ritalin. I asked him if he could take me off work for
at least a week to see how I would do on this medication. I am
beginning to sense that my employer is loosing patience with me. The
doctor took me off. The Ritalin made my ears ring terribly, gave me
a really bad headache and I swelled all up. I stopped taking it and
go back to the doc on Thursday (He told me to take the Provigil until
then). Does anyone have any suggestions for me? (Medication, doctor,
work, coping-related). I could use some support. I think I have
tapped my family and friends out... Kerry

Hi,
I'm Yvonne, a new member here. Currently, i'm researching on sleep
disorders. These include sleep apnea, sleep walking, sleep bruxism,
insomnia and narcolepsy. I would like to know more about the
experiences that one goes through. So if you or the people you know
have any of these disorders. Kindly share the experience with me.
Please post them up or email me.
Thank you!
Your help is much appreciated!
Yours sincrerly,
Yvonne

Hi,
I'm Yvonne. Currently, i'm researching on sleep disorders. These
include sleep walking, sleep bruxism, sleep apnea, insomnia and
narcolepsy. I would like to know more about these disorders,
especially the experiences that one goes through. So if you or the
people you know have any of these disorders, kindly post them up. OR
you can email me.
Thanks a million!
Your help is much appreciated!
Yours sincerely,
Yvonne

Subject:
Senate Confirms Sutton, 52-41
Date:
Tue, 29 Apr 2003 16:56:56 -0400
From:
Justice For All Moderator <jfa@...
Organization:
Justice For All E-Mail Network
To:
justice@...
"Senate Confirms Sutton, 52-41"
This afternoon the Senate narrowly (52-41, with seven
Senators not voting) confirmed President Bush's nomination
of Jeffrey Sutton to the Sixth Circuit Court of Appeals.
Although the disability community "lost" the final vote,
the closeness of the vote is a sign that our message was
heard.
The vote reflects a deep partisan divide. Every single
voting Republican voted FOR the confirmation of Sutton.
All but two voting Democrats -- Nelson (NE) and Feinstein
(CA) -- voted AGAINST Sutton's confirmation. (Six
Democrats and one Republican did not vote.)
If your Senator(s) voted NO on Sutton, please contact them
and thank them for supporting the ADA and civil rights. If
your Senator(s) voted YES on Sutton, please contact them
and tell them that you think they cast the wrong vote.
Use your call or letter as an opportunity to educate your
Senators about the importance of the ADA.
Below please find an AP story about the vote, a breakdown
of Senators' votes, and Senator Leahy's pre-vote statement
on Sutton.
Many thanks to all of the individuals and organizations who
have organized and supported the Stop Sutton! campaign and
to the Senators who supported the campaign within the
Senate. It was a battle well fought.
Jonathan Young
JFA Editor, AAPD
=============================================
Senate OKs Bush Appeals Court Nominee
By JESSE J. HOLLAND
.c The Associated Press
WASHINGTON (AP) - The Senate on Tuesday approved a former
Ohio solicitor general for a seat on the U.S. Appeals Court
despite protests from disabled persons who say Jeff Sutton
worked to curtail their rights.
By a 52-41 vote, Sutton was approved for the 6th U.S.
Circuit Court of Appeals in Cincinnati, which handles
appeals from Ohio, Kentucky, Tennessee and Michigan.
The vote came after about 150 disabled activists crowded
into a room at the U.S. Capitol and urged lawmakers to vote
against Sutton.
``I need you out there reminding every senator who you see
... a vote for Jeffrey Sutton is a vote to undo the
Americans with Disability Act,'' Sen. Tom Harkin, D-Iowa,
told the cheering crowd.
Sutton's supporters say he is well qualified.
People who question Sutton ``will no doubt attest to Mr.
Sutton's keen intellect, his even temperament and the depth
of his legal knowledge,'' said Sen. Mike DeWine, R-Ohio.
``These attributes demonstrate why Jeffrey Sutton is one of
the finest appellate lawyers in the United States today and
why he will be an excellent federal judge.''
Democratic senators have criticized Sutton for attempts to
limit federal civil rights protections and to gut or weaken
protections for state employees with disabilities and older
workers.
The Columbus, Ohio, lawyer argued successfully in a Supreme
Court case in 2000 that Congress exceeded its authority by
permitting state workers to sue their states under the
Americans With Disabilities Act.
Sutton told the Senate Judiciary Committee at his January
confirmation hearing that he would be fair as a judge and
asked them not to hold his previous work as a lawyer
against him.
``I'm trying very hard to show you that I would be an
objective judge and that the client I would have is ... the
rule of law, not a former client," he said then.
Senate Majority Leader Bill Frist, R-Tenn., also announced
that he will try ``sometime this week or next'' to force a
confirmation vote on Priscilla Owen, a Texas judge who
wants a seat on the 5th U.S. Circuit Court of Appeals in
New Orleans.
Democrats have called her an anti-abortion, pro-business
judicial activist whose opinions and rulings are overly
influenced by her personal beliefs. They have not said
whether they will try to block Owen's confirmation.
On the Net:
Justice Department biography of Sutton:
http://www.usdoj.gov/olp/sutton.htm
=======================
Statement of Senator Patrick Leahy
On the Nomination Of Jeffrey S. Sutton
To The U.S. Court Of Appeals For The Sixth Circuit
April 29, 2003
Today we are going to vote on the nomination of Jeffrey
Sutton to the U.S. Court of Appeals for the Sixth
Circuit. Yesterday I spoke about some of my concerns, but
I want to again discuss my serious concerns with this
nominee.
Mr. Sutton has a legal philosophy focused on limiting
Congress' historic role in protecting the civil and
constitutional rights of all Americans. He has led an
aggressive campaign to dismantle long-standing federal
laws, enacted with bipartisan support, that have made this
country more inclusive over the last half-century, and to
close access to the federal courts for people challenging
illegal acts by their state governments.
As a lawyer in private practice, he has aggressively sought
out cases to limit the power of Congress to enact laws
protecting individual rights, and he has been dismissive of
congressional findings and hearings supporting important
federal laws. He has sought to weaken, among other
laws, the Americans with Disabilities Act, the Age
Discrimination in Employment Act, the Violence Against
Women Act, and the Religious Freedom Restoration Act. He
has also sought to limit the ability of Medicaid recipients
to enforce their rights and the ability of individuals to
enforce disparate impact regulations under Title VI of
the Civil Rights Act. In essence, he has argued for the
Supreme Court to repudiate more than 25 years of legal
precedents that permitted individuals to sue states when
they violate federal civil rights regulations. His extreme
judicial philosophy would undermine the rights of state
workers, disabled individuals, women, children, racial and
ethnic minorities, and older Americans.
Mr. Sutton and his supporters have claimed that he was
merely acting on behalf of his clients in all these cases,
but this claim is unconvincing. Mr. Sutton had no
obligation to participate in any of the cases taken after
he left the Ohio State Solicitor's office in 1998. In
fact, he has admitted that he sought out cases curtailing
congressional power as a private lawyer and that he is on
the "lookout" for these cases. He has aggressively pursued
a national role as the leading advocate of his concept of
"states' rights" and, as my colleagues have noted, he has
made clear in his own statements that his advocacy on the
principles of federalism is something that he believes in.
He has made statements praising many of the Supreme Court's
decisions undermining Congress' authority to protect and
assist citizens, and in his personal writings and speeches
he has advocated an even narrower view of Congress'
role. Perhaps most significantly, Mr. Sutton has taken not
a single case that supports congressional power to enact
laws protecting civil and individual rights. In each case
that he has argued before the Supreme Court, he has always
been on the same side of this issue -- arguing that
individuals have no right to enforce