WP Weblog

Enter your vote today! A poll has been created for the
rosaceans group:
What Prescription Medications do you use to treat
your rosacea? Number one POLL QUESTION -
check the Number Two question on this since

Gee after I took a nap and came back and read my posts I seem to have talked in
circles. Maybe I do it all the time.. lol. Jasper..tell Ray what you thought of
those questions?... Dorla

Hi Everyone!
Thought I would share this newsletter with the group, just in case some
find information they like or need. The first one about employers
needing to provide special accommodations for persons with sleep
disorers....looks interesting. I dont have the time to check this one
out as I am running on empty to move. Let me know if it is
helpful......
A very sleepy Kat

You can buy Metrocream in Tijuana, Mexico for $8 - $10
per tube. Tijuana is a 3 hour drive south of L.A. on
Highway 5. I didn't need a prescription, but I had to
visit several pharmacies to find a few tubes. Many
pharmacies carried Metrogel but only a few carried
Metrocream which is better for dry skin. I have also
heard you can buy medicines cheaply over Internetrnet
from distributors in Canada, especially if you already
have a doctor's prescription.
I had gone to Tijuana for facial claseric lazer
treatment. It costs around %50 of what it costs in
San Francisco and the doctors are more skilled because
it's their specialty. I was happy with the service,
however follow-up treatments will be a nuisance
because I don't live near there.

I think if you live in the states(I dont) you REALLY need to shop around any time you have a prescription. Although this particular one is mentioned spefically, there is a chart here that shows the wholesale cost of some common drugs And what some pharmacies are charging for it - its shocking! some are almost $100 for a $4 drug. There is a link at the top to the article in the news about it.

http://www.detnow.com/news/020925-drugchart.html

For comparison on your $80, here in canada it was about $22 CDN before dispensing fee.($14 USD)

-Kat

okay, i've never joined an egoup before, so i
hope this works. i have read a lot of the
recent postings, it has been very helpful.
last month i was diagnosed with n. my main
concern at this point is getting on the right
medicine. so far i have tried dexedrine spansule
(extended release), provigil, and ritilin. the
dexedrine was great until i crashed after about
7 hours, then if i took anymore it kept me up
at night. the provigil was more natural, but
like dexedrine, after about 7 hours i crashed
and had no concentration and felt like a blob.
at this time i would actually be more sleepy.
so far the ritilin is okay, but i have to take
it all day if i begin in the am because it is
only effective for a short time. i've been trying
to hold off until late in the day, and just take
one 10 mg then. but i still struggle then with
eds in the day. i am curious about the desogyn,
and shore release, or regular dexedrine. is it
most people's experience they must try several
combinations before finding one that fits? also
how does taking stimulants effect ability to
exercise? i has been difficult for me to have
the endurance to do much when taking meds, don't
know why. thanks for any help or advise to a
new narc.-stacy

Go to http://news.bbc.co.uk/1/hi/wales/2699149.stm
Lonne

Anyone seen on the news ( just saw it in Australia ) in the UK a new laser for acne, alot of doctors are amazed with it. Not sure if its applicable to acne rosacea or not.....

PLease tell me how to get it that cheap! Please?

I got Metronidazole .75% Metrocream for $80 from the
pharmacy in California. Later I got the same thing
for $9 in Tijuana. Has anyone who has been on this
medication for a while found it helpful? My doctor
said it would be two months before I'd notice an
improvement in my facial redness.

Did anyone in this club get this letter.. I
thought the questions were the most demeaning ones I have
heard and They haven't a clue as to what SCI entails.
Inferred it was a sickness. <br
and I am a MBA Graduate Student at
Monterey<br
e-mail<br
On" and I was<br
are a group of students conducting a<br
people with SCI.<br
professor:<br
student<br
href=http://infopoll.net/Live/surveys/s10084.htm
target=new
letter explaining SCI is not a
sickness and their questions were less than intelligent.
Dorla

I ordered proactive and tried it once. It has a
grainy
texture like a scrub or exfoliator. The first
application made my face burn. I returned it as I
could tell my skin was not going to react well to it.
--- "yankees92808 <yankees92808@...

How long has it been since you have worked? Just because you gone on
disability doesng mean you have to stay on it. But if you wait too long
before applying for it you can miss out on it. There are usually
lawyers that help on a babis when you get the disabiliity they accept
25% of your back pay. You memtioned another health problem, you can
also focus on that one to try to get your disability. Maybe with the
help of Medicare for some of your other medical expenses you could
afford the medicine. Even when you are below the poverity level it is a
pain in the A-- to get get to pay for these meds.
In our town we have a agency called Ability Resources that is a United
Way agency, that helps disabled persons for no charge. I hope this
email is makeing sence I am still kinda asleep!
Kat

FYI There are buyer protection policies in place at paypal. Just the
other day I found a charge on my paypal account that I didn't think
thatI had authorized. I stopped payment on it through their
website. Turned out it was to a name that I didn't recognize but
indeed it was a payment that I had intended to make. So I then
turned around and let them know that the payment was okay then to go
through. Getting it okayed after I had complained about it was
harder than stopping the payment on it.
The study is intended for people who already have an idea about what
photo-rejuvenation is. Hopefully no one would sign up and pay a $250
deposit for a machine that they didn't think could help them.
Therefore we accept those interested in the study and those willing
to put a deposit down for the equipment necessary to complete the
survey. The survey covers a variety of different questions geared
towards different skin conditions. If indeed someone signs up with
head lice or something silly like that we would be more than happy to
refund any money they deposited because we are not interested in
doing a study on head lice and photo-rejuvenation. Just a joke, but
you get the point. Hope this clears things up a bit.
Jonathan

Well, dear friends...my worst fear concerning my medication for the N has
happened. My insurance...a group policy with my hubby's employer which I am
very fortunate to be on, will not pay for ANY medications for N.
Does anyone know where I can get some assistance? I am on Desoxyn which
is the only med that worked to keep me awake. I take 30 mg. daily in 5mg.
tablets. It takes 360 tablets a month at a cost of a dollar a pill!
I have an immune system problem where my body doesn't recognize
infections and I am on almost constant IV antibiotics just to stay alive!
I don't want to apply for disablity as I have hopes of eventually being
able to work again. But I don't know where to turn to get some kind of help
with the med for N. We are not at poverty level while at the same time...I
have monstrous medical bills every years since 1995.
This medication is meth-amphetamine. It makes me furious to know that so
many are dealing this stuff on the streets just for the fun of it and I can't
even afford the legal prescription for a valid medical condition. My
insurance just doesn't cover N at all. With my other health problems, I
couldn't afford another insurance co. even if I could find one that would
cover me.
Does anyone have any suggestions besides setting up my own meth lab which
I would not even consider. Geez. I could never afford an attorney too.(sic)
Marilyn

Using Mum for the American Mom is so nice. I wish
we used Mum here for it just seems to have a more
loving sound to it..Then when I hear Mother I feel like
my children are rebelling on me. Of course the
Southern version of Maw seems very disrespectful to me.
Funny Paw...doesn't seem to have the same disrespect.
Just musing around.. Dorla

Thank you, Jasper. Your words are very kind and make me feel awfully
good...:)<br

I can see where they are coming from though. That machine is expensive, they can't just send one out to everyone who signs up for the study. People could take the machine and not complete the study and then they are out alot of money each time that happens.

My concern would be the following: If you visit their website, you answer a couple of questions, and before even being admitted into the study they ALREADY ask you to pay them $250 through Paypal before you can proceed. What happens if you pay the $250 and then find out you are not eligible for the study? (Perhaps you aren't the right age, or don't have the right symptoms?) They can't just refund your money, because Paypal would take out 3% both to send to them and 3% of the remainder to send it back. To me it sounded sort of fishy that they were asking people for $250 before accepting them into the study. $250 would be worth it to me if it meant a chance to get rid of this problem, but again, it seems sort of suspicious the way its set up in my opinion. And I also know Paypal is routinely used by people to scam others because Paypal offers absolutely no fraud protection on any transactions whatsoever, and you have no recourse to pursue them legally unless you happen
to live close enough to take them to small claims. So I'm not quite sure what to do at this point either.

"jonathancobb01 <jonathancobb@...

The $250.00 is a deposit on the equipment that to date sells for
anywhere from $5000 to $7500 on the market new today. This is an
honest deposit to make sure you fill out all the surveys. Once the
surveys have all been filled out and two photos have been sent, the
deposit is refunded and you will need to send the machine back. This
is reasonable considering the price of treatments by lesser machines
in salons and day spas across the country. Similiar equipment is
being used at salons and day spas across the country but we hope to
compile some proven results and information about exactly what this
treatment will and will not work on.

I am curious how many PWN have their drivers licence and drive
regularly. Of those, how many of you had your licence before you were
diagnosed? If you did already have your licence, do you think you
could have passed all the tests after being diagnosed (given that you
would have to learn to drive, and not simple pass the test.)?
I only ask because I was 17 when I was diagnosed. I had my beginners
at the time. There was no question; I would not be able to continue
to drive. The stress from driving with an instructor was enough to
cause cataplexy. Even today, my doctor tells me that I am one of the
lucky ones some of his patients are not able to do as much as I
am;
I am in no condition to drive. There are times when I go for a walk
that I cannot even cross the street. I know when I am riding my
bicycle there are times that I must simple let the momentum of the
bike carry me because I am too weak to stop. To try to stop would
ensure that I would fall.
I am beginning to question my doctor as to whether my narcolepsy is
as controlled as I can expect or if there is something more that can
be done. Here are a few situations that will cause cataplexy for me.
How does your situation compare?
- I go to see a movie. My friends and I have learned not to speak
to me after the movie until am I seated in the car, even then about
half the time I have to be picked up at the door.
- I cannot have a conversation with someone while walking down the
street.
- Sitting at home watching a movie on tape, I normally can get
through the movie at the theatre.
* Now that brings up another question. Is it cataplexy when I
am watching a movie or is it simply falling asleep? I am fully
(relatively) conscious at the time. I simply cannot lift my head or
open my eyes, I don't know about anything else that might be
going
on, muscle spasms, etc. That constitutes cataplexy doesn't it?
What do you think?
Shannon
--- In narcolepsy@egroups.com, Peter Ackermann <khenynbilt@e...

Hi Ray,<br
know how sorry I am to hear about your mum. Just
remember that we will all be think about you over this
difficult period, and if there is anything we can do, you
only have to ask.<br
mums better very soon.<br

Just a small point, because I don't want people thinking that because they
have insomnia, they must not have narcolepsy...
It is true that PWN have "interrupted night time sleep" as that is part of
what our sleep studies show(crazy sleep cycles). However, to say that
"persons with narcolepsy do not have insomnia" is not entirely correct, as
some of us have insomnia as a consequence of that interrupted sleep. If
someone has not yet been diagnosed and not had a sleep study, one type of
insomnia, frequent awakening, might be an observable clue that narcolepsy
is a possibility. I think one reason many people go undiagnosed for so
many years, is because so many doctors think narcolepsy means sleeping all
the time(the few that have even heard of it!). Rather, narcolepsy is more
of an inability to maintain a consistent state of consciousness. Insomnia
is sometimes referred to as the "fifth symptom".
There are two types of insomnia, and either one may be suffered by a person
with narcolepsy. The first type, and the one most people think about when
they hear the word "insomnia", is failure to fall asleep. Failure to fall
asleep, while not a symptom of narcolepsy, can be a consequence of some of
the medications we take to control symptoms(also, many PWN suffer from
other illnesses, which can cause this type of insomnia). "Frequent
awakening" is the second type of insomnia, and the one that I refer to as a
possible direct symptom of narcolepsy. We could call it "interrupted night
time sleep with a vengeance". ;-)
Either way, whether directly caused by the narcolepsy, or caused by
medications(or one of the many other problems that we seem to be plagued
with), I can certainly see why people on this list might talk about
insomnia in reference to narcolepsy. It is an unfortunate part of many of
our lives(and another reason I wish Xyrem were more readily available). :-(
Lynn Hutchins
tibicia@...

Hi All,
I came to this groups because I thought I might have narcolepsy and
wanted to do some research. My father has N and C so I was afraid I
might have got it genectically. Weel, from all your wonderful posts I
feel I don't have it.
But I intend to keep a watchfful eye out as I grow older. I now feel
I would like to give you all back some privacy and am withdrawing
from the list.
As I said when I came in I moderate a couple of lists, one dealing
with depression and the other with anxiety, and how to use food as a
healing tool. So I'm familiar with "listing groups".
I just wanted to let you know that you have a very wonderful and
loving community here. Congrats!
Keep supporting each other!
As a list moderator I have one leeetle suggestion. Personal attacks
violate the safety of the group. Keep them to private e-mails.
Sharing needs safety and safety needs boundaries.
That's my 2 cents,
Thanks for your support!!
Tony - p.s. I've told my father about you guys and I'm going over
to see him today. I'll navigate him through this eGroups stuff so he
can sign up. I think he is interested.

They want $250 for the machine, according to the form you fill out to
sign up. It doesn't look like it is free at all. I'd rather not pay to
get into a study. Especially since you sign away all your rights. So
you have no rights if it harms you AND you pay them!
Pam in D.C.

Oh ray I'm so sorry about your mom, I hope you
can get her the proper help...Your such a good son!
God speed on her recovery..! I hope all had a
wonderful Thanksgiving! God Bless to all..<br

IS THIS COMPANY ON THE UP & UP? I'VE JUST BEGUN MY
PHOTO REJUVENATION SESSION (ONLY 1 SO FAR) AND I'M
IMPRESSED. I'M NOT CERTAIN ABOUT THIS EQUIPMENT. ANY
FURTHER INFO ON IT AND/OR THE COMPANY?
--- "jonathancobb01 <jonathancobb@...

for awhile because my Mom had a stroke and needs
24hr care; until my sibs and I determine what steps to
take to get her that care, I will be staying with her
when I'm not at work so I'll probably only get home
about twice a week. But I'll try to keep up on things
as best I can from the office. Mom doesn't have a
computer, so that means I can only get online while at
work, and that has to be very limited...
naturally.<br

There is a photo-rejuvenation trial study underway by Quantum
Skincare. Read the press release at
http://www.usanews.net/_archive2002/0000042f.htm or visit
http://www.quantumskincare.com to find out how you can get a free
photo-rejuvenation machine.

Allow me to clarify: There are 3 versions of Dalacin
T/Cleocin T available. 1. An alcohol based SOLUTION
which isn't recommended for Rosacea sufferers. 2. A
non-alcohol based LOTION which my derm prescribed to
me. It is very soothing and non-irritating. 3. A
non-alcohol based GEL which is also non-irritating.
I have personally use the LOTION & GEL versions.
Unfortunately, neither are still available from
overseas pharmacies. New Zealand, for example, has
changed their prescription standards for Dalacin T and
it is no longer available.
I suggest buying a 60ml tube of the generic GEL from
Drugstore.com as it is very inexpensive. (The generic
LOTION is still quite expensive). I hope this
information has been helpful. Here is the
link:http://www.drugstore.com/pharmacy/prices/drugprice.asp?ndc=59762374302&trx=\
1Z5006
-Jordan
-- "Lonne <martinec_lon@...

Hi,
I just received my Dalacin T I ordered from the internet and was wondering if
this helps with the redness associated with Rosacea or only the acne outbreaks?
I do have quite a bit of redness and noticed the smell of the Dalacin T has a
very strong alcohol odor.
Thanks
SL Sampson

I highly recommend you buy Dr. Geoffry Nase's book on Rosacea. It is the most comprehensive guide to treating rosacea that I have found. It seems that each person has different triggers and different treatments that work. IPL photoderm (like laser but no downtime) is one of THE most effect, and is very affordable. Doxycycline is another good treatment. I did not have as many pustules, so the acne types of problems were not as much of a difficulty for me. Ocular rosacea and facial edema have been my worst enemies in addition to facial redness.

Go to www.rosacea.ii.net

from there you will find a link to all sorts of information.

The recommended suncreen that Dr. Nase will point you to is from Lynda Sy - www.lindasy.com - it is called zincO. I like it. It is not as hard to blend in as others. I bought the tinted the first time, but actually prefer the non-tinted as I do wear makeup and the two are a little too much. There is actually a treatment regime card that she has listed on the site that recommends her products and the order to use them for rosacea. Check that out first.

For Dr. Nase's book - you have to go to Dr. Nase's site - it is about $35 - www.www.drnase.com - look for the link at the bottom of the screen - www.drnase.com/purchase_book.htm .

Again - get this book - it goes into just about every known treatment available - the pro's and con's. He is a researcher, that also suffers from Rosacea - he is pretty much known as the guru - and as he will tell you - even most well meaning dermatologists still don't understand this disease - and totally mistreat it). I have found that to be totally true - as every one of them have tried to give me cortisone for the face - a big no-no. You can only get his book on his site.

Good luck!

I posted this message on the rosacea-diet group the other day and I
would like your feedback. I know you are not doctors and cannot
diagnose me. My dermatologists calls my symptoms Rosacea, but I'm
not so sure. Your feedback appreciated!
Hello,
I'm new to the group and I have 100 questions. My first one is
this. Do I have Rosacea? For the past year or so, I've had
persistent pimples/boils on my nose that sometimes get very large and
nasty. I get periodic small pimples elsewhere on my face, but
nothing like what happens on my nose. My doctor treated this with
antibiotic (Cephalexin) which suppressed it, but every time I went
off, they came back.
I requested a referral to a dermatologist who tried Tetracycline and
Erythromycin, neither of which worked at all. He then put me on
Septra DS, which has been most effective, but they still come back
after a few weeks off the antibiotic.
I don't have any of the classic Rosacea symptoms I read about, like
flushing, widespread redness, etc. I don't think I've ever blushed
in my life. It's only these nasty nose breakouts, usually just one
at a time, but quite large. I'm of a somewhat dark complexion and my
skin can get very oily at times. The pimples/boils have left behind
redness and visible vessels, which my dermatologist says I may live
with for life.
So, my first question, understanding that you are not doctors, is
this. Does this sound like Rosacea to you? Are there others here
with similar symptoms?
Thanks
Tom

I have had rosace for about 5 years and I had used Noritate untill 3months ago,it seemed not to be working. Tried Culivate Cream is not working. I will go back to my determogilist soon. But please make suggestions to what you have found out that is best. Also what kind of suncreen. I am a outside person all year. I am 52,female, and very active. Any input would be very helpful. I thought maybe it would just go away but now I have eruptions on nose that get cleared and next under my eye. That clear and it seems like it never gets clear. Thank you very much Diane mosley.

Hi,
I'm Guinny. I'm new to this email list and to the N. diagnosis. I am just
trying to figure out what all the short forms mean. From what I know about
N., HH must mean something to do with Hallucinations. I DEFINATLY know these
as they have been a constant source of TERROR for me. I am not sure what
some of the other short forms are, and I am hoping that someone can fill me
in. I have just been diagnosed by my sleep doctor with Narcolepsy. After
ruling out any other sleep disorders the only other problem I have is with
restlessness (which is probably caused by some degree to my post traumatic
stress disorder and night terrors). I went to an eating disorder doctor to
get treatment for my eating disorder and he wanted to first rule out
sleeping disorders before we began nutritional treatment. We needed to know
if there was another reason other than depression to explain my EDS
(excessive daytime sleepiness, I presume, cause I know this well too!).
Anyway, after trials and trials of those lovely sleep tests and labs and
naps and nasty hallucinations one after another, we finally came up with a
diagnosis. When I was going through the testing I had to come off my
anti-depressants (Psychiatrists years before realized I had trouble with
sleeping but never diagnosed it as Narcolepsy. They just put me on Dexedrine
telling me it would help with the daytime sleepiness, but other doctors took
me off it when they discovered I had an eating disorder). so that they would
not affect the results of the testing. I was also suspectedly pregnant at
the time and had come off of them anyway. After going through serious
withdrawl from Paxil (after being on it a full year at 60mg dosages) I went
through some SEVERE narcolepsy symptoms. Not only did I have strange fits
of sleep during the day, but I started having those TERRIFYING
hallucinations. I found that I would sometimes be laying in bed at night and
not even realize that I had fallen asleep. I woudl think that I was still
awake. My boyfriend at the time called them 'waking dreams', but I never
knew these were a symptom of N. At that time, I just thought they were a
result of the paxil withdrawl and something normal for me to expreience. I
deal with dissociation a lot, so I suspected that this was all part of it.
Anyway, when I first realized they were happening I didn't know that it was
the lack of Paxil in my brain that was bringing this back. I have always had
very vivid and bizzare dreams for most of my life, but never did I exerience
such terrifying experiences. Sometimes I would have these 'waking dreams'
but these were happening EVERY night and I hated them. I remember sometimes
thinking I was getting pulled into the television and realizing my boyfriend
was lying right there beside me I would be screaming at him but unable to
say anything to him or move at all. I would wake up in a frenzied panic
covered in sweat from head to toe and trembling and whining when the
paralysis finally kicked off and I realized what was happening. Only once
was I able to stop in the 'dream' (cause they NEVER felt like dreams) and
say to myself that it was just one of our waking dreams and that we just had
to stay calm and wait until we woke up in order to pull out of it. Then,
when it happened that time, i was okay. But that was the only tiem while i
was off the Paxil that it ever helped. I remember during the MSL studies
there was a man there in the laboratory doing the testing. He would come in
after the 15 minute naps and the first few times he came in I would have
these vivid hallucinations that he was coming in and raping me and hurting
me. I was so terribly panicked. I don't know if it the my history of trauma
that causes these wakign dreams to be more horrific and terrify and if that
is why I have been so affected by the sleep disorder, or not. Once I went
back on my Paxil the hallucinations subsided and I haven't had any of them
since (THANK GOD!!). Now when I dream they are so vividly bizzare I know
it's a dream (even if I don't at the time). I still remember everything and
only once in a while will I have a dream of the terrifying kind that seems
so real and vivid. Even then I don't BELIEVE that I am awake...even when I
finally am awake and still not able to tell the difference. I don't know if
I have made it clear, since it's so hard to explain what this feels like
unless someone is there inside your mind. Being fellow N. sufferors,though,
I suspect tha tyou know where I am coming from. I guess the other thing that
I was wondering about, is if anyone has had any luck with Ritalin? When
psychiatrists tried to treat my EDS many years ago before they knew I had
N., they tried me on both Dexedrine and Ritalin. While in hospital the
Ritalin made me Manic, and the nurses took me off it immediately before even
telling the doctors because they were so frightened. It increased my heart
rate astronomically and I was bouncing off the walls and talking at 50 miles
per hour. It scared both me and them. After that, the psychodocs tried me on
Dexedrine, which seemed to work well cause I left the hospital on it.
Unfortunatly, when my regular psycho doc found out I was on it and learned
of my eating disorder he took me off of it because of it's anorexic effect.
Since then my eating disorder is more manageable and the Paxil is working to
treat both the N. and my depression. The sleeping doc put me on Ritalin. I
presume the most prescribed medication for this disorder. For the first few
weeks it was working fine with little side effects but a reduced appetite
(which I never argued with). But now, I've stopped taking it all together
cause I just couldn't handle it's weird 'mind effects'. I found that it
would increase my mood dramatically but within minutes and even seconds
sometimes, it would go up and down like a friggin yo-yo. Never did I
constantly feel content or un agitated. It was a good feeling, while it
lasted and I found it changed my sleepiness to a strong degree.
Unfortunatly, it so strongly affected my emotions that my job and my life
was suffering. I once got so manic and agitated and elated that I went out
to a store and spent more than half my paycheck in one shot ($178.00). When
I got home and the effects of my medication wore off I felt so gulity and
could not realize what I had done. It was so out of character for me. I also
found my self continuously walking up to people, talking to them, greeting
them and making conversation. Which for some may seem normal, but for me and
my shy nature, totoally out of character. I found myself sometimes talking a
million miles a minute and not being able to stop my thoughts at times. When
there was too much medication in my system (which was never effected by a
change in dose cause I was fairly regular with these doses) I found that my
heart would race, my hands would shake and I would sweat. I would sometimes
suffer with orthostatic hypotension (stand up and get dizzy), or my mood
would drastically jump fromelation to depression in 3 seconds flat.
Someitmes I became so manic that i felt WORSE than being depressed. If
that's possible. So, needless to say, I have stopped taking th emedication
and am trying to get in contact with my doctor to see what I can do next.
Has anyone else had such dramatic psychological and physiological effects
with methylphenidate? Anyway, thanks for listening to me ramble a lot and I
hope someone has something to offer. :o) Take care of you and let your angel
wings fly...
Until then,
Guinny
}"{ Budderfligurl }"{

Getting ready here at my home to have the family
come for the dinner. Got the house straightened up by
stuffing the closets full and getting out the extra table
leafs so we can all sit around the table. Got the
groceries bought and list made so I don't forget anything.
Now all I have to do is cook it and then eat left
overs for several days. lol...But with two 6 foot
grandsons the left overs are getting smaller every
year....lol Hope everyone has a nice one..Dorla

Something I am extremely grateful for is the
friendships I have made in these sci and sb clubs and the
help I have received from everyone as I learned about
the disabled's lifestyle. Nothing can ever mean more
to me than my online friends. I hope everyone takes
a few minutes this Thursday to remember those
things that are important in their lives and for which
they should be sincerely thankful.<br

Junior, you don't seem to be getting any answers
on your chair question. Have you heard from anyone
in other clubs?? Want me to pose your question in
others that I belong to and see what kind of response we
get there??<br

anybody ever tried pro-activ?

Can anyone give me information on these chairs?<br
interested in finding out if anyone knows the down side of them. Thanks.

I used Minocycline for a few months, but it provoked migraines -
headache is a noted side effect.
I have also used Claratin with pretty good results - but I have a
lot of allergies and there is no doubt that histamine release is a
factor for me.
Currently I use mostly natural preps, vitamines, and gentle topicals
with good results (except when I eat something I am allergic to).
Specifically for my skin I use oregon grape root extract 2X per day
(by mouth), plus B1 sublingul.
My skin is not perfect, but is usually good enough that no one
notices anything wrong. This is excellent, because at one time I
looked so strange I was tested for Lupus. my face and neck were
covered with welts and hives, and I was always red. Then I ate
something and flushed more. I kept pictures to remember how bad it
got.
Interestingly enough - the only prescription med I currently use
regularly is Nystatin - which is an antifungal. It seems to keep
the flushing down.
If I get a bad flare up I go back on Doxicycline for a couple
months, but it is not too fun. Haven't had to for quite a while now
though.
Hope this helps. If someone wants more info on the Oregon Grape
Prevention mag ran an article on it in the May edition - go to
www.prevention.com and search on Oregon Grape. This article covers
Psorisis and eczema, and I use that dose, but I had seen earlier
articles that it also helps many Rosacea patients too. This one
just got me to try it. It takes a couple months to know if it is
going to help.

Thanks for the info...I am now wondering why they
changed. I know our Doctors used to have to study latin
and thought it was becaue of the prescriptions but
not sure. So that would explain giving it a latin
name. Maybe they just want to keep us on our toes. I
always did think that they used medical terms to just
confuse us and try to impress us....So much simpler to
just say the common word for so many things. Or maybe
they thought that way we wouldn't know what was being
talked about..But then the big push now is for the
Doctor to make it clear to you exactly what your
problems are and that the medicines and dosages are
understood ....To the point that I get very irritated. The
Doctor tells me what he's giving me and all about it and
then they send in a pharmacists assistant and she
explains it and then when I have the prescripton filled I
have to go through and hear the same old story from
the pharmists. Enough is enough.!!! lol Dorla

In a message dated 8/3/00 3:51:59 AM Eastern Daylight Time,
veach@... writes:
<< What is the difference between Dextrostat (Dexedrine)
and Desoxyn? Dextrostat is also a methamphetamine.
What the pharmacists think isn't my problem. Staying
awake and waking up are.
Hello Tim and All,
Though it is to early after waking up and I really want to address your
posts...but when I wake up...lol. I would like to pass along this site on
medications for N to all of you. If you have AOL, you may use the first one
(I hope)...I often refer to this site....specially if I want to get something
through to my doctor....they seem to listen to Stanford....hee hee! I will
write more later!
Christie
<A HREF="http://www-med.stanford.edu/school/Psychiatry/narcolepsy"
FOR NARCOLEPSY</A
http://www-med.stanford.edu/school/Psychiatry/narcolepsy

Is that the same as minocycline? I have taken that with no side effects that I know of.

Here in the UK the term Tetraplegic is much more
common than Quadriplegic. So far as I understand it they
both mean the same thing Tetra being from the Greek
root and Quadra from the Latin.<br

I hope you all have a good one.. Dorla

I'm wondering if anyone has used Minocin? I've been prescribed this
by a Determologist. The side effects, however, may be blue spots on
your legs or maybe the teeth. Also dizziness, headaches (these
particular symptons can produce fluid on the brain). This is about
1% of the patients but I'm wondering if anyone has taken this
medicine. Thanks

Anyone have use this product and share some stories. I have rosacea
for about 5 years and used this product for about a year. I find it
so-so but looking at this e-group, W will try the alternative
medicenes many have reccomended. Thanks

I tried everything. Finally, I was put on Desoxyn...a
stimulant...methamphetamine. I take 30 mg. a day in divided doses of 10
milligrams 3 times a day. It is the only thing that worked! My life was going
steadily downhill due to the sleeping. However, if you succeed in getting
your doc to prescribe it...be prepared for the pharmacists to look at you
like some dope head. But you know what? It is worth every bit of that just to
have some of my life back.
I hope this helps.
Marilyn

Hi all. It started in Feb. 99. I was in a pick-up
truck that hit black ice and rolled when hit by a gust
of wind. The truck cleared a barb-wire fence and
landed on it's top. I spent 3 weeks in a Sioux City, IA
hospital and 3 months in a rehab hospital in Englewood,
CO. I'm a c6-7 complete tetraplegic (correct lingo
know, I guess) and paralyzed from the arm pits down.
I'm thankful for all the family and friends that have
helped me through this.<br
albums. <br

Junior, welcome !! :)<br
yourself.<br

Tim, i too sleep all day. fortunately, i do shift work and am able to sleep
until 3 in the afternoon. maybe this would help you. i don't know. i am only
21, was dxed only 4 months ago and haven't had much of the experience with N
as some of the others have, but i have been a long sleeper all of my life,
and i find that having someone force me to get up helps, or if not, doing
things later in the day (like midnight and after) helps, b/c i am more alert.
talk to your doctor. maybe they can give you trazadone, or a similar med, to
help organize your sleep and thus give you more restful sleep, so you can
actually wake up! i hope this helps! i know that there are others who may
know more, but.... i am trying!!!! LOL
crystal

I have visited the link and story you suggest reading.
On behalf of the board, please stop posting this crap
once and for all. Here is the post from
idealstories.com so everyone can see that it's just
another sleazy sales pitch/product testimonial. The
product is named Custom Essentials(brand):
----
Christofferson, IH San Diego. Thanks for sending this
to the group! ... Dr. Karolen Bowman, an IH Marketer
in NC and also a pediatrician MD, had aggravating
Rosacea for 5 years. She noticed major improvements
after 8 weeks on her Custom Essentials, and now, after
10 months, she is completely free of symptoms and says
she is told that her skin is "as soft as a baby's
butt!" She's VERY excited about Ideal Health.
Apparently, Rosacea does not have a recognized origin
and there is no cure for it. It's a very big problem
for those who have it. It affects mostly women past
age 30. Please put this in your testimonial file. Dr.
Bowman's upline in NC is Susan Parisi, if you need
verification.
JohnC

Dear Subscribers of the Narcolepsy group,

I am a new subscriber. I was diagnosed with Narcolepsy earlier this year
and excuse me for my expression but my life has been HELL ever since.
I am 41 my life has always been stressful, however, have always been
able to deal with stress quite well knowing that I have a Father in Heaven
(God) that cares for me a great deal.

Beginning last summer, I have had serious problems falling asleep at odd
times.... like in the middle of a conversation, and I'm the one talking! Or
simply in the middle of walking. Often when I would wake up in the
morning I could not move for lengthy periods of times.

This spring I went to my doctor. He sent me to a sleep specialist who
ordered sleep tests. He said that the sleep test confirmed Narcolepsy.

My previous physician had ordered Ridlin because he to felt it was
Narcolepsy. My sleep specialist, however, noting my experience with
Ridlin (headaches and no relief) changed my prescription to Provigil.
Provigil also caused headaches and although helped me feel more
awake did nothing to help me from falling asleep at strange times and
places.

He then prescribed Dextrostat which I am presently taking up to 80mg a day.
Presently I struggle to stay awake at anytime of day, however, with Dexostat
I do not fall asleep unexpectedly. I do, however, live day to day feeling as
if I had no sleep for a week. Unlike most people with Narcolepsy I do
sleep well. I sleep very well. If no one touches me to wake me up
(sound rarely wakes me up) I will sleep up to 48 hours straight. A painful
bladder will finally wake me up.

Okay, now that is enough about my condition. Anyone have any solutions
on how I can control this better? There is no way I can live the rest of my
life like this. I am most likely going to lose my job tomorrow. I have missed
work so many times. I slept straight through the day again today. I slept from
9pm yesterday until 9pm this evening a full 24 hours. Any suggestions any of
you can provide would be appreciated.

I know everyone has an opinion. This is your chance to give it. I will read
everyone. I may not, however, follow every suggestion! <smile

Sincerely,
Tim Veach

you paint a pretty picture, my friend !!<br

I tried aloe topically a few years ago. It was great, cool and soothing. It was like a miracle for about a year and then all of the sudden it stoppesd working. It was weird. I have read that is has a natural steroid in it and is not god for long term use. Who knows. Im not sure I believe that. I say if it works great, theres no harm in it. Good luck!

Lora

Cold here. Ice froze over the wooden rain catcher
tub by my house. Supposed to get snow. Gee....do I
hear Christmas bells already before Thanksgiving.
Always anxious to get the first snow. It is so pretty
and the world just seems to be so quiet. The Sun
makes it look like diamonds are scattered all over the
yard...Twinkling in the sunlight ..Then the roar of snow plows
breaks the stillness and our clean white snow turns to a
pile of dirty snow...Dorla

Aloe vera is EXCELLENT for rosacea!.
I take three ounces a day.
But it has to be PURE NON-DILUTED aloe vera juice,and I would highly
recommend that you ONLY buy aloe vera with this seal on it,
ALOE CONTENT AND PURITY IN THIS PRODUCT.CERTIFIED.INTERNATIONAL
ALOE SCIENCE COUNCEL.
I use Lilly of the desert.It is 100% certified organic and it
contains 99.7 % aloe juice.
Good health to you!
MM

Having the radio help control sleep paralysis is one I hadn't heard
before! Definitely, something I'll have to remember if anyone asks me in
the future for ideas on how to deal with it. I wonder what makes it work?
Unfortunately, for me, any noise, especially noise coming from electronic
devices such as radios and televisions(I am very sensitive to certain
sounds), seem to trigger myoclonus really, really bad(myoclonus - that limb
jerking problem as you fall asleep). I would never get far enough to sleep
to worry about sleep paralysis if I left the radio on. Insanity from lack
of sleep might be another issue. Not that we've really established that
I'm sane, mind you... LOL
Although, it may be a coincidence, my sleep paralysis mostly stopped, when
I decided to change the way I reacted to the sleep paralysis. Instead of
trying to wake up when it happened, I made myself go back to sleep. My
theory is that it is still happening, but I don't remember, because I go
back to sleep too quickly for my mind to form the memory. This might
possibly be an example of a symptom that didn't necessarily get better,
just something I learned to cope with as I aged.
There have been a couple of episodes in the past couple of years, but those
incidents involved me forgetting that I had decided to go back to sleep
when it happened, so I tried to wake up, and well...I definitely
remember! One advantage that I have, though, is that I don't have the
terrifying hallucinations that so many others suffer with(my breathing is
restricted, and I feel a bit claustrophobic, but I'm not seeing demons and
intruders and other horrors). I could easily see where the hallucinations
might make the choice to go back to sleep a bit difficult.
I wonder if the radio would help with HH, too?
Lynn Hutchins
tibicia@...
ICQ# 1734957 (Tibicia)

So glad to see you back. I remeber when my
daughter took her collar off for the first time. She said
her neck felt like a wet noodle. She had a hard time
holding her head up. Hope to see you more often ..Dorla

Hello,
I haven't read anything conclusive about colloidal silver, and no one
knows the long term effects, so I'd look for something else.
I haven't seen anything about aloe vera in the polls, though. I've
been taking it internally and topically for the past month, and it's
helping me a lot.
Has anyone else tried this?
Steve

Hello to all...your leader finally gets on
comp...but not for long...anyway..Ray is doing a better job
than I did....Your doing great ray... :) Thanks....And
to all that tried to talk to my the other night like
jasper and sunshine... sorry all of a sudden the phone
was ringing off the hook...then my youngest came home
and took over..Im also not feeling well...I have no
appetite...and was running to the rest room every 10 mins... and
felt like getting sick,,, I think its all the meds I
was taking... but anyway..<br
my collar is off, but now the PT just started...its
very weird having it off..I feel very strange and
stiff...so thats why i now have to work off the
stiffness...<br
night im sorry...!<br
bless..<br
than me... keep it up..<br

Thank you for the information Nick..I appreciate it. Susie

Perhaps if Bush succeeds in Flordia and this
electoral voting is the way I understand it now...perhaps
they will cast those votes for Gore....lol.... Never
in a million years with Bro Bush as Govenor. Dorla

Oh, gosh, could I identify with not asking what happened, because of the
looks you get from others like, why is she asking what happened? My husband
will ask me questions I simply can't answer because I seem to be operating
often on automatic pilot and don't remember all that has happened. I imagine
he thinks I have early onset dementia or something. But I 'm not that old! :)

Crystal,
yes I have Sleep Apena, also PLMD {periodic Limb Movement Disorder} and
RLS, {restless legs syndrome} these all affect and compound the
Narcolepsy. At least that is my opinion and that of my current doctor.
My last doctor wouldn't believe me. I also have Fibromyalgia and MPS
{Myofascial Pain Syndrome} which affects the stage 4 sleep which is
where our bodies restore the muscles and other stuff thus one reason
for all the constant pain.
Also have you ever noticed that your symptoms get worse with you female
cycle? i had that in my 20's. It got better in my 30's, but then in my
40's when my female hormones were changing the N. was affected again by
it. Surgery last spring changed that.
Just some thoughts. I also have had a more severe case, {have been told
by many health care persons} and know I had the symptoms as a child. I
think people that do get diagnosised in the early 20's or teens usually
have had symptoms as a child. Or else just lucky to have found a good
doctor early.
Stress also affects almost any disorder and I have many more and have
been under EXTREME STRESS....having to move in 29 days and dont know
where I am going and have lived in the perfect house for me for 14 years
!
This isnt my choice. Please have positive thoughts for me!! and my
kitties.
Purrs,
Kat

hi kat.
i have seen a lot of letters from you in the group, so i guess you are a
good person to make friends with....it seems like you know a lot about it. i
am sure there are lots of others that know a lot too. i have always had the
symptoms, i think. i know that they have gotten worse in the last year, esp.
in the last 6 months. for the first time in a long time, i am wide awake. but
that isn't a good thing, considering that it is 2 am. the trazadone that i
was on was to control the stages of sleep. when they prescribed the
trazadone, the doc and i didn't even know that i had cataplexy yet. i think
that maybe the trazadone did increase the "spells". i am not taking it
anymore though. i have so many questions, i don't know what to ask. i also
forgot to mention earlier that i also have sleep apnea, along with the
narcolepsy. does anyone else out there suffer with these two at the same
time?
crystal

Turning blue from taking colloidal silver is not necessarily an old
wive's tale, but you are right about the quality of the product.
Cut and paste the first link; you should be able to click on the
second one.
http://www.montanaforum.com/rednews/2002/10/03/build/elections/silver
blue.php?nnn=2
http://www.cnn.com/2002/ALLPOLITICS/10/02/offbeat.blue.candidate/
Lonne

Elsa,,,,Also,,WHY would you CHUCKLE at someones skin turning
permanantly blue?
This is FACT not fiction!.
Do you really think that is FUNNY?

I think you misunderstood. No one called you a quack. We were
referring to "Roxanne," who posts at many rosacea web groups
with "cures" and who responded to your query.
Lonne

I have not been fully following your election
this time around, so I guess my opinion is not
completely valid (but I am going to give it anyway). Between
Bush and Gore I would like to see Gore win, simply
because he appears to have more knowledge of other
countries and just the world in general. Bush seems to have
some pretty strange ideas and lower vocabulary than my
eight-year-old nephew! I would love to see Nader win, (he seems
to have more intelligence than the two combined) but
that is not going to happen...<br
uneducated opinion for you :-) <br
smiling and dreaming!<br

Hello Elsa.
If you take COLLOIDAL SILVER that is your business.but you are wrong
that you have to have a LARGE ammount in order for your skin to turn
blue/gray.
One woman was given nose drops as a child and she was blue/gray by
the time she was a teenager.
Im in a hurry right now.When I have time I will post up her
web site so everyone can read her story.,among other links.
And she is just one of many.
If just ONE person develops this horrible hideous condition from
Colloidal silver that is too many!.
There are certainly ENOUGH cases of it to haul it off the shelves.
Some polotician (spelling?) Oh I,ve had a long day,,,,turned blue/gray
from it and he publicly admitted it.
People with this live in total reclusion.What a horrible way to live.
Im sorry,
The risk is too great.
I,ll pass thank you.

Crystal,
I think one thing you described was autonomic behavior(also called
automatic behavior). I've been told that these two symptoms come from
fighting sleep attacks so hard(not taking naps, well, at least, not napping
in the traditional sense of laying down and closing your eyes). People who
are severely sleep deprived also have these same symptoms. This only
verifies that suspicion you might have that you are feeling a bit sleepy.
Autonomic behavior is where your body keeps doing whatever it's
doing(walking, sitting, riding a bike, washing dishes...driving!), but much
of the thinking part of your brain falls asleep(literally), and later you
have no memory of it(that's because that part of your brain was asleep). I
think of it as falling strait into sleepwalking, while awake, and that's
how I explain it to people who see it and don't understand(although
technically, I think sleepwalking is not quite the same as far as
brain-waves go). I rarely talk, occasionally respond to "hello" and
"goodbye" with mimicked words, and I can't write at all, when it happens.
You are in essence sleeping while appearing awake, which is why I was
referring to "traditional" naps, earlier(my own indication that I'm not as
successful at fighting naps, as I'd like to think). The worst part is that
people around you start to think you are insane, and you're not sure if
perhaps they aren't right. I've gotten so I don't even ask anymore, "what
happened?", because it's not worth the even weirder looks, that say "lock
her up and throw away the key!". LOL
Different people have slightly different things happen to them during
these episodes, but usually anything that involves higher brain function
gets a little strange. Welcome to the wild and wacky world of narcolepsy.
Lynn Hutchins
tibicia@...
ICQ# 1734957 (Tibicia)

I'd like to hear from Jasper and others from
outside this country on our elections. Are you following
them with any interest? How do you think the elections
will affect how our countries work together, or will
there be no change? Any thoughts would be
appreciated.<br

I'm not selling anything but I had to chuckle at your comment about turning blue/gray from taking colloidal silver. I have used this product for years and also my young children use it whenever they have the sniffles, and I can honestly say none of us are anything but WHITE. I think you need to have a very high grade of collloidal silver to be useful for anything. Maybe a discount store might turn you a gray color but not the true stuff. you only get waht you pay for. My dog at age 15 plus also takes silver...... This wise tale should be put to sleep. Again I know inferior products of any kind can do crazy things to one's body. research,research research is what is all about. god bless

It is cold and dreary here today. Wonder if that
will affect the voting turn out. It sure would for me
except there has been so much posting about this
election that I'm determined to go and cast my vote. I am
always interested in the local ballot the most but have
got caught up in all of it this year. I always vote
for the person and not party and will have to vote
split ticket to try to elect the county supervisors
that I want this year.. Guess I'm not a true blue
politician.. lol Dorla

Susie,
Its not a prescription drug no, it can be picked up at a pharmacy/drug store
here in Australia. But international orders would be best made by the
website or phone.
http://www.naturopathica.com.au/productpage.jsp?prodid=prod250047
Its actually designed for capillarys but works good for rosacea, because it
has alot of good ingredients such as
Bearberry - A safe natural form of hydroquinine, a potent skin lightener
which gently fades discolouration of the skin.
and
Calendula - This natural remedy has considerable benefits in healing wounds,
reducing inflammation and constricting blood vessels to stop bleeding. This
assists in the mending of broken capillary walls.
Thanks,
Nick

Hey, It can be a real nightmare finding the right Rx and dosage for each
person. I went through some of the same problems you did. I hated the
Ritalin. My Dr. put me on Cylert, but it took me several weeks to figure out
what was the right dosage and timing to take it. At first I took one pill in
the morning, and I would feel full of energy for most of the morning and up
to lunch, but after lunch I took a dive straight down. So then I started
taking a half a pill in the morning, and another half mid morning, and that
worked great for about three years. Now I am not sleepy, but I don't feel
like I have any energy. I am now searching for something different. I also
found out that I have to take the name brand of Cylert, and not the generic.
The generic was not useful at all for me.
If you hear from anybody else, let me know, I am looking for some new
answers. I guess after I few years, the effectiveness wears off.

Ok thanks Marilyn, I was only wondering about that stuff. I sure
wouldnt want to get mixed up with something if its that dangerous.
Respectfully, Susie

Hi Susan!.
Yes ,Like I said , in my last previous post people are DESPERATE and
looking for ANSWERS.
You were merely asking a QUESTION.
But I guess some people here are tired of trying to be SOLD too.(It
does happen,)
Regarding COLLOIDAL SILVER,PLease read my last post.
PLEASE do NOT take COLLOIDAL SILVER!!!!!.
MM

i was diagnosed with narcolepsy in april of this year, and since my
diagnosis, it seems that i have just been getting worse. i now have
to sleep 10-12 hours every night. i have completely isolated myself
from everyone. i am always saying no to invites, and now i am getting
fewer and fewer invites. my family takes no interest in helping me,
but my doctor and his staff are lifesavers.
i started with provigil, and all it did was make me lose a lot of
weight (i am already underweight, so that wasn't a good thing.) then
they put me on trazadone, which is an antidepressant, that also helps
to organize sleep. just today, they gave me ritalin - 2x a day.
i began having severe sleep attacks recently, i start talking total
nonsense in the middle of a conversation, and then i wake and have no
clue as to what i just said. i am always tired, i am getting
depressed because i feel helpless and hopeless. the doctor now thinks
that i may have some strange form of cataplexy, where i don't
actually pass out or fall down, but i "black out". i have hh and very
vivid dreams (i still don't understand the difference!). i have it
all. i get worse every day.
i am only 21 and i start school in two weeks. i need some help with
dealing with this, experiences with all of these symptoms and
experiences with ritalin. i would appreciate everyone's help very
much!!! also, i refuse to give in and go to disability already. any
ideas of what i can do for money? i have a good insurance policy,
which pays 100% of meds, but i have to meet a $1000 deductible this
coming january. waitressing has worked out for me, and i am able to
stay awake, but i don't want to do this forever. PLEASE HELP!!!! ALL
REPLIES WELCOME!
thanks!
crystal
cgrossie1@...

Thank you Marilyn, I am indeed truly fed up with looking like I've
had too much sun...I would like to find something that works...and
to Tricia and whoever else thinks I'm a quack I was in no way
whatsoever trying to sell anything...especially seeing as how I've
never tried it myself...that's why I was wondering if anyone else
had ever tried that collidal silver. I sure never intended to
offend anyone by asking a simple question.

I saw a post in NM where a picture was on the screen. Can that be done in the

--- In narcolepsy@egroups.com, Nancy Valencia <nanzzz@s...
You wrote an excellent piece about the ANA/NN history. Its sad that
you had to use this forum and mar your good work by taking pot shots
at me.
While I won't change your opinion of me, I will attempt to correct a
few "facts" here for the readership as a whole. I would normally
ignore an attack on me -- but your attack also attacks the fine
doctors who have treated me.
No need. This is public information. NARCOLEPSY.ORG and
NARCOLEPSY.NET are owned by "Narcolepsy Internet". The
administrative contact (meaning, the guy who owns and pays for) those
addresses is myself: Dana Groff. Go check them out yourself:
http://www.narcolepsy.org is the address, http://www.narcolepsy.net
is simply a synonym.
{I run the Narcolepsy Internet (a self-help PRIVATE email-based
list). PWN, their family, and care providers can join by asking for
a membership form from owner-narcolepsy@...}
Yup, I own both "narcolepsy.org" and "narcolepsy.net" and Bill Baird
owns "narcolepsy.com". Many years ago I talked with Bill and many
others who are active on the N-List via news://alt.support.sleep-
disorders. I determined we needed a private place to talk about
Narcolepsy and thus the Narcolepsy Internet {N-List} was born. I
talked to Bill about his work on N&SD, subscribed to his
newsletter... and gave him some pointers on writing his web pages...
I remember when he was just putting them together on AOL. Remember, I
had my Narcolepsy Internet website up earlier using a work account.
As someone who had been on the internet since the early 80's, it was
just the thing to do. I should point out: I owe Bill a lot. Without
N&SD I probably would be on disability and there wouldn't be a
WWW.NARCOLEPSY.ORG. In fact, it was the work of one of his writers
that turned my life around. The L-Tyrosine issue started the long
road to learning to live with and succeed in spite of Narcolepsy.
Admittedly, I haven't been around as long as you. Ummm... maybe that
is because I am not as old as you. Moreover, my diagnosis was made
in 1995. I am not exactly a movie-star nor am I someone who
campaigns for recognition on every message board on the internet.
Who did you expect would get those names? I offered to obtain them
for NarNet, but my offers of help to NarNet went unanswered. I think
they were more focused on their new director. I don't have the time
or energy to figure out what was up with NarNet and keep trying to
aid where none seems to be desired. I wish them well and, to this
date, I have focused my free time to help the growing population on
Narcolepsy Internet.
I wonder why I am singled out and not, oh, lets say another young
person like Brian who runs YAWN? Maybe because I have rules on how
members of [N] must behave?
Now this makes me very angry.
Who are you to determine who has narcolepsy and who doesn't?
Are you a doctor? How can you second guess my doctors?!!!
Dr. Aurabach in Boston and Dr. Buysse in Pittsburgh BOTH agree I have
Narcolepsy. And listen, hear this: I don't want this diagnosis! I
hate it. And it does interfere everyday in my life. No, except for
the brief time I was on ritalin, I don't have cataplexy -- well at
least none that interferes with my life. Dr. Mignot's team has
traced my genetic markers and my parents. I know from "whence this
thing comes" and....
I don't need to justify myself to you. But, to the readers as a
whole -- she is throwing mud here.

I put up the post,To all those screaming Quackery,,.
OK,,,I read your replies back and now I understand where you are
coming from.
What you are saying is that many people out there are coming here
trying to SELL something!.AND ,,It is always the wonderful CURE ALL!.
I have heard no one say anything against GOOD NUTRITION,VITAMINS and
COMMON SENSE.
Yes I do hate HYPE of all kinds.
Herbs ARE a medicine(although natural) but must be used with RESPECT.
I do not neglect going to my family doctor just because I take a
totally natural path to my health.
I use both WISELY together.
I do agree that coming in here to SELL things is in bad taste.
If something has worked for someone,and they post it up for the forum
to read that is entirely different.
I think that playing on peoples DESPERATION is really tacky.
And for the record although I 100% beleive in NATURAL ALTERNATIVE
METHODS,I do also believe that there ARE some quacks out there!
I feel that way about COLLOIDAL SILVER.(and if anyone here in this
forum is on COLLOIDAL SILVER,and say it works wonders,please spare
me your speal on it!.You will not CONVINCE me!)
It may be helping people on some level,but the RISKS are way too
DRASTIC!.
Look,Laser therapy and pulsed light WILL remove veins,rosacea,port
wine stains,birth marks etc,,,.But there is NO surgery that can
remove BLUE/GRAY skin!.
That is PERMANANT!.
And,I cant UNDERSTAND why people would take such a HUGE RISK like
that!.
And if you think that there is only a very TINY percentage of people
that would actually get BLUE/GRAY SKIN(ARGYRIA OR ARGYROSIS) and that
it couldnt POSSIBLY happen to YOU,you are wrong.
There are more and more cases of this horrible disfigurement every
day!
And it was from making up a home made concoction of COLLOIDAL SILVER!
Boy,give me a bad case of acne ANY DAY!.
Why do our bodies need silver anyway?
I always wondered that.
Anyway,,,Im going on about Colloidal siver,.Didnt mean to babble.
Natural health is the BEST way.(In EXTREME cases I DO believe in
LASER SURGERY,)
Rosacea is NOT curable at this time BUT you CAN ..REVERSE or STOP
the PROGRESSION of Rosacea,and your SYMPTOMS need not ever RETURN.
Have a good day!
MM :)

Hi Nick, Where do you get that product at capillary clear? Is it a
prescrition drug? Susie

HELLO FROM SOUTH AFRICA, I TURN MY BACK FOR A COUPLE DAYS AND FIND
THAT EVERYONE HAS BEEN BASHING THEIR KEYBOARDS FAST AND FURIOUSLY. IT
HAS TAKEN ME NEARLY HALF AN HOUR TO COME UP TO DATE.
SLEEPY DRIVERS...WELL I THINK OUR ROVING REPORTER, WHOEVER SHE MAY
BE, WAS LEFT IN NO DOUBT OF WHAT YOU THOUGHT OF HER! AND MAY I JUST
REITERATE YOUR VIEWS, MAY SHE HANG HER HEAD IN SHAME AND LEARN TO
KEEP HER OWN EYES ON THE ROAD. PLEASE NOTE DIANA WAS NOT BEING DRIVEN
IN AN ENGLISH LIMO, NOR IN ENGLAND, NOR BY AN ENGLISHMAN, BUT IN A
GERMAN CAR, BY A FRENCHMAN IN PARIS, AND REGRETFULLY ONE WOULD HAVE
TO GO THROUGH A MEDIUM IF THEY CHOSE TO SPEAK WITH HIM.
I NOTICED A NUMBER OF YOU COMMENTED ON JEOPARDISING YOUR LICENCES BY
DECLARING SLEEPINESS AT THE WHEEL, I EXPERIENCED A NEAR-MISS IN MY
CAR PRIOR TO MY DIAGNOSIS. BY LAW I HAD TO DISCLOSE TO THE DVLA MY
CONDITION, AN ACCOMPANYING LETTER FROM MY DOCTOR STATING THAT I WAS
STABILISED ON MEDICATION ALLOWED ME TO RETAIN MY LICENCE WITHOUT
FURTHER QUESTIONING. THOUGH ONE OF THE MOST AGGRIVATING THINGS ABOUT
THE INGORANCE OF THE MASSES, IS THEIR INSISTANCE ON SENDING FORMS TO
BE COMPLETED, READING MATTER AND LISTS OF HELP GROUPS ON THE SUBJECT
OF EPILEPSY, EVEN MORE SO WHEN THIS IS COMING FROM A SO-CALLED
MEDICAL OFFICER OF A GOVERNMENTAL DEPT. WHO SAID IGNORANCE IS BLISS?
ANYWAY THANKS FOR YOUR COMPANY ON THIS LONG ROAD, NOBODY LIKES
DRIVING ALONE ESPECIALLY WHEN EVERYONE ELSE SEEMS TO BE TRAVELLING IN
THE OPPOSITE DIRECTION.
BUT WE`LL JUST PUT THE ROOF DOWN, TURN THE MUSIC UP, AND WAVE THEM
AS THEY PASS,
YOURS AT THE WHEEL, CATH.

BRAVO!!!! BRAVO!!!! Nancy!!!
Oh my goodness are you trying to get me to feel my age??? I was finally
diagnosed with N the late 70's and found out about the ANA in about
81-82..... So much of the "tour" is very familiar!! What an excellent
piece you wrote, it really should be saved and put on a page to keep
the history of some very important people like Sue, Bill & Ruth & etc.
that have made a difference. I do remember when I would tell people
that I had N. and they would go..."Oh Oh are you going to seizure on
me??" DDAAAAA.......to "Oh yea that is where you sleep too much all the
time" well better but not really it..........we have come a long ways,
YET in so many ways still so much to get the RESPECT we deserve as a
PERSON with a disorder..........
Thank-you very much Nancy for the tour!
even if I am feeling my age more....that and packing and packing to
move.....
purrs,
Kat

Hi Ray and All,<br
am not working currently. I wouldn't mind getting
together and chatting once in awhile. I usually chat at
<a href=http://www.2tim.net/chat.htm.
target=new
is welcome.
<br

Hello y'all,
Everybody fasten your seatbelts 'cause we're going for a ride. I'm doing
the drivin'. <Okay, gents, who made the smart assed remark about women
drivers? Hmmm?
sleepin' allowed--this vehicle doesn't have a back seat!) Before
beginning
our tour back in time, I want to welcome all the new people on board
this list. With only a couple of exceptions, you are in good company.
We grump 'n grouch every now 'n then and some occasionally growl, but
what the heck, we've all got the right to vent! Hey, you old
timers--you
know who you are, shake a leg and get with it! Greet our newcomers,
old acquaintances, and get yourselves seated for this fantastic trip
back, back, back in time.
I've set the dial of this time machine thingy to 1975. Turn your
attention to that view on your right, you'll see Stanford University.
Note the young man and woman talking. They are members of a small group
of persons with narcolepsy who have volunteered to participate in sleep
research projects conducted by William Dement.
The next scene is the kitchen of the young woman who is serving coffee
to her male visitor. She is Sue Carella and the man is Bill Baird; they
are the co-founders of the first organization of persons with
narcolepsy. Note the elderly gent in the background. See the money in
his hand? That's Sue's father, Mr. Brockaway. Zoom in on the
incorporation papers for the American Narcolepsy Association on the
kitchen table.
Accelerating forward a bit, we are viewing ANA's tiny office where Bill
and Sue are following a script as they listen to the radio. Bob Hope is
doing a PSA--a public service announcement--about narcolepsy and the new
organization, the American Narcolepsy Association.
Momentarily we leave California for Arizona. Note the couple and the
German Shepherd dog in the pick up with the camper shell. The driver
has just asked his drowsy wife if she heard Bob Hope's announcement on
the radio. Well, there I am, folks--yeah that's how I looked in 1975.
Not bad, huh? Note my open mouth--I can hardly believe what I just
heard.
I'm responding that it must be some sort of scam by insurance companies
to find persons with narcolepsy--to take away the driver's licenses.
Yawning, I quickly dismiss the idea of contacting the ANA.
I'm resetting the time gizmo for 1979. Look at that pile of mail in the
ANA office! There's Sue working on the next edition of "Eye Opener."
Bill
is on the phone with Charles Schultz, the comic strip artist. Zip Zap
to 1983. Take a look at the scenes on your left. See that young man
in Texas--he is yawning, the bleary-eyed middle aged lady in Cleveland,
the parents of a sleepy headed child in Maine? As you can see, they
are all reading the "Peanuts" comic strip in the newspaper. Note the
expression of their faces as they learn that what is ailing them has a
name--n-a-r-c-o-l-e-p-s-y.
Folks, swallow, so your ears don't pop as we
drop into southwest Missouri for a second. Yeah, there I am at my flea
market stand; I'm reading Baird's "Non Technical
Description of Narcolepsy," published by ANA. The hum you are hearing is
me thinking that perhaps I should get in touch with this outfit. Yikes!
The hum she, er, me, er, I mean I'm, uh, hearing is this craft! We're
outta here!
On to California, on to 1984. Wave to Sue Carella, Mary Vitali,
Bill Baird and others as they board jets to attend a meetings,
meetings, meetings! At the ANA office Bill is greeting Dr. Honda, the
Japanese researcher who discovered the genetic markers for narcolepsy.
Zoom in on the December 1984 issue of "The Eye Opener" which says ANA
has 3000 members from all over the world. The ANA film, "Keep Us Awake"
is reducing the delay in getting an accurate diagnosis. However, the
never ending chore of educating the docs continues to be a challenge.
Bill Baird is contacting 300 researchers who have interest in
narcolepsy. Note he is in constant contact with the FDA in his orphan
drug project for narcoleptics.
In this momentary dip into 1985 you can clearly see the ten year old
ANA is making a big difference in the lives of people with narcolepsy.
Board members include co-founders Sue and Bill, charter member
Marguerite Purcell, Robert Peterson, Janet Wright, Vicki Schoephoester,
Ray Johansen, George Schattle, and Mary Vitali.
Viewing 1986, what appears as an internal conflict is actually visionary
on the part Sue Carella and Ruth Nebus. Zoom in on the incorporation
papers of Narcolepsy Network which promotes local, regional, and state
support groups. Of course, Sue and Ruth continue their work in ANA.
Sanford Abelson, a person with narcolepsy and philanthropist, ANA member
since 1976, quietly asks his friends to contribute money to ANA.
The ANA office has a visitor, a man in an expensive silk suit. That's
none other than Joe Pissweed. Sorry, folks, I do not allow myself to
utter this person's real name. Yes, he is narcoleptic--at least he say
he is. Having just sold his company, he has time on his hands and he is
bored, but his money makes people, particularly researchers, smile. In
fact researchers kinda gravitate toward the green stuff.
Blink and you'll see yours truly in 1989. I'm looking haggard--it's due
to having to jump through hoops. Yes, that is a money order in my
hands. I'm sending in my dues to ANA for the first time. At last I see
the handwriting on the wall. It's one thing dealing with the narcolepsy,
but having to deal with ignorant docs, suspicious pharmacists,
unsupportive and meddlesome family members, creates an extraordinary
burden on individual narcoleptics. I'm thinking that change is needed
to make the lives of narcoleptics better. I shouldn't have to jump
through hoops every month just to get medication which gives quality to
my life. I'm getting off my duff and getting involved. Joining ANA is
the first step.
Take a look at those two men on your left. The bearded one is Bill
Baird; the other is Cliff Robertson, honorary national chairman. That's
right, Cliff Robertson, the movie star. Cliff does the new PSA about
ANA and narcolepsy. Other Hollywood stars serving on ANA's honorary
board of directors include John Forsythe, Jack Lemmon, Karl Malden,
Gregory Peck, and noted producer, Mel Shavelson.
On your right, note
that Bill, Executive Director of ANA, is overwhelmed with work, and is
asking the ANA board for an assistant. Sue, continuing to serve on the
ANA board is engaging fellow board member Bob Clark, a neurologist with
narcolepsy,
in conversation. He writes the question and answer column for "The Eye
Opener."
Moving toward 1990, note the body language as Pissweed orders Sue to
resign from the ANA board. She's telling him that she isn't impressed
with his money nor his order. She's wishing that he would fall into the
Pacific, but knows that would only contribute to pollution and cause
fish to die.
Take a look at what is going on in Missouri. I'm reading a letter from
Marion Rippee who has already been speaking every where she can about
narcolepsy. There I am again, talking with Marion on the phone. She just
asked me to set up the next--1991--annual meeting of the Missouri
Support Group in Columbia.
Let's take a quick look at an extraodinary event in 1990. Sue is
testifying before Congress in the National Commission of Sleep Disorders
Research. Bill Dement, Chairman of the Commission, listens as Sue and
many others tell members of Congress that federal help is needed for
research in sleep disorders.
Momentarily, let's eavesdrop on the 1991 support group meeting going on
in Missouri. The room is dark while Dr. James Dexter, Professor of
Neurology at the University of Missouri School of Medicine, appears to
be deliberatedly causing the narcoleptics to have cataplexy. Is this
some sort of research project? No, it's an outrageously funny slide
show called "The State of Narcolepsy." The slides are unusual photos
taken during his travels Narrating, Dexter points to an old rusted
water tower seriously leaning over abandoned railroad tracks. "This is
the current condition of medical arts in the state of narcolepsy--not
quite upright and threatening to hit narcoleptics on the
railroad."
Why is Bill Baird, Executive Director and co-founder of ANA, standing on
the outside of the ANA office? He's been locked out and fired by his
new "assistant," Pissweed's pismire. Inching forward in time, Bill is
unemployed and Pissweed is elected President of ANA board.
I'm accelerating to 1992. Kansas City is up to date as the Missouri
support group gathers for the annual meeting. Look at Marion Rippee
handing the gavel over to a new leader. My mouth is open, not to catch
flies, but at amazement that Marion has appointed a successor, a person
who is unknown to the group.
A court has ordered a new ANA election of board of directors. Yeah,
that hat in the ring belongs to yours truly, a virtual nobody in
Missouri who has narcolepsy and an acid, truth-spewing gift of writing.
The 1993 election is confusing to narcoleptics all over the US. It
looks like Pissweed's side won--or did they? Hmmm. View the sign on the
ANA office door: Closed due to bankruptcy! Reason: Pissweed, bored
corporate baracuda, destoyed ANA for no valid reason at all.
Let's pause momentarily at the 1993 Missouri group meeting in
Springfield. Having reclaimed the gavel, Marion is anxiously awaiting
the arrival of the speaker. She conducts a group discussion on
narcolepsy to pass the time. A man in the back of the meeting room
arises and introduces himself to Marion. The neurologist says that he
has learned so much more about narcolepsy just listening to our
discussion while awaiting his arrival!
Zip/zap to August 1993 Canada. It's the first joint meeting of
Narcolepsy Network and Sleep/Wake Disorders Canada. Note the familiar
faces: Sue Carella, Ruth Nebus, Bob Cloud, Joyce Lewis, Charles Ilsley,
Niss Ryan, Jo Ann Clevenger, researcher Meeta Goswami, to name a few.
The chunky one, yours truly, is talking with the
friendly Canadian sleepy heads. Let's zap outta here, the heat 'n
humidity are making me sleepy!
I'm not going to hone in on 1994 because I'll be embarrassed for you to
see my messy apartment. I keep the mailing list of persons with
narcolepsy and continue to add names to it when persons with narcolepsy
call for information. I form a local support group and we meet a couple
of times in a private home of a narcoleptic who is a lot better about
keeping house than I am. If I can start a support group, then y'all can
start a support group
What's Bill Baird doing in 1995? He is publishing "Narcolepsy and Sleep
Disorders" and is drawing the attention of researchers from around the
world. He also has a presence on the internet in his web site
www.narcolepsy.com. Speeding to 1996, the internet is growing like
wildfire. Domain names ending in .mil, .gov, and .edu are not available
for individual purchase. That leaves .com, .net, and .org. Bill Baird
owns .com. Hmmm, Let me test my mind reading skills. Yes, you want to
know who...I'll give you one clue; the same character owns both. He
seemed to pop up outta nowhere or perhaps from the woodwork. He isn't
known in narcolepsy circles, but that is understandable because he
doesn't have narcolepsy. I'm of the opinion he hasn't done much with the
domains, but won't let anyone else do anything with 'em either.
Permit me to land this time craft while we view the years from 1996 to
2000 in this historic tour of narcolepsy organizations in the United
States. Narcolepsy Network is growing slowly and sometimes painfully.
Attorney Robert Cloud serves as leader. Although she is seriously ill
and can not travel, Sue Carella is certainly involved serving on the
Board of Directors and editing the newletter "The Network." Ruth Nebus,
co-founder of Narcolepsy Network, died in 1999.
It was Ruth's philanthropy that allowed me to retain my membership in
Narcolepsy Network while I endured impoverishment during the disability
claims process. I remember Ruth for her keen sense of humor as well as
her ability to nap in place, awaken ten minutes later and pick up the
conversation as though she had never been asleep! In the second half
of the nineties, Ruth traveled internationally and made contact with
other narcolepsy organizations abroad.
Bill Baird is still actively working--without pay--on behalf of
persons with narcolepsy. He is still producing "Narcolepsy and Sleep
Disorders."
In 1999 the annual meeting of the Narcolepsy Network was held in
New York City and was very successful. Highlighting the meeting was
researcher Mignot's speech in which he announced that the gene for
canine
narcolepsy has been found.
Neither Narcolepsy Network nor the American Narcolepsy Association would
have
existed were it not for the tremendous work done by two persons: Sue
Carella
and Bill Baird. Using their individual talents, these two people have
contributed
more to the quality of the lives of narcoleptics than any other human
beings
who have ever lived before. Very few have recognized them as they
deserve to be
recognized. They certainly weren't rewarded economically. To say they
live modestly
is a great understatement. Yet, they continue to contribute. Bill
keeps a close
watch on state legislatures regarding GHB and sends out messages
soliciting persons
with narcolepsy to contact legislators. Sue edits "The Network," the
quarterly
newsletter sent to Narcolepsy Network members. These are only a few ways
they continue
to contribute to our lives.
Now that you've taken the tour and have learned the history of
narcolepsy
associations, you should be able to discern who's who and what's what.

I'm happy if carrot juice works for you. There's nothing lethal about
carrot juice. And it doesn't sound like you're selling anything. More
than anything else, I resent people who try to sell stuff. And, many
of the herbs are more dangerous than prescription drugs because they
aren't regulated and aren't tested.
I don't use Metrogel. It doesn't work for me. I use Azelaic Acid. I
had to make my Dr give a prescription for that. He thought it would
irritate my skin...it never has. But, Metrogel was really starting to
upset my skin.

To all of you who are screaming QUACKERY on this forum and every
other forum,Do you not REALIZE that people with severe rosacea are
just DESPERATE to find a SOLUTION for this TERRBILE,DISFIGURING
DISEASE?
Although I do NOT agree with COLLIODAL SILVER as it can turn you
skin into a terrible blue/gray PERMANANT condition,I DO beleive in
many natural methods,vitamins,herbs,water,excercise to CONTROL it!.
I am living proof that it works.
There is NOTHING QUACKY about a nice fresh glass of CARROT JUICE done
at home from a juicer!,or taking 100 milligrams of VITAMIN B every
day.
I see too many people relying ONLY on their dermatologists,medical
pills,metrogel and all that other EXPENSIVE stuff only to be very
FRUSTRATED and DISSAPPOINTED.
Whereas NATURAL works!.
It takes longer but the results are WORTH IT!.
I can enjoy a few drinks of alocohol,go out in the sun,and enjoy a
spicy dish.
And it because of my ALL NATURAL,veggie,fruit
eating,excercising,juicing,vitamin taking regime!.
Dont be too harsh on people who are just DESPERATE to CONTROL this
ugly thing and who are SEARCHING for information!