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I took a course of Accutane for cystic acne in my mid 20's. It was
wonderful and I was acne-free for 5 yrs. I did develop rosacea during
that time, but no acne. I'm getting pustules and papules with my
rosacea now. I'm taking oral antibiotics...which are making me sick.
I talked to a derm. about taking Accutane and she tried to make me
feel bad for even asking about it. She said it would give me wrinkles.
I thought it might give me relief from the acne-side of rosacea. I'm
not too bothered with redness..I can keep that under control with
azelaic acid.
Please don't suggest that I do diet changes or take OTC herbal
supplements to improve my rosacea. If you have personal experience
with taking Accutane for rosacea, I'd like to hear it.

Donna:
My (what I now know to be) N symptoms increased dramatically about 2
years ago. One of the many symptoms that appeared (and still have) is
that there are times I sweat VERY easily (brushing my hair can make
me sweat). When that happens, I now see that I also feel tired and
weak -- I don't know which came first or if they hit at the same
time. I was only diagnosed with N last week, so I'm still doing a lot
of self-observation and discovery. I've nearly given up taking my
temperature, because it is always fine, but sometimes I feel so flu-
like I can't resist.
I don't know what it means. Maybe we are the only two.
As for your herbs not working recently, are you buying a brand that
is potency guaranteed? It might be that you simply have a bad batch
(or two) of pills.
-- Leslie G.

Hi amy,

yes I have been using the cream too but not the cleanser. I have been told that Total Effects has glycerin in it and that draws moisture to your face which is good I guess except that over the long haul that action in itself causes wrinkles. .. go figure eh?

So I do use it but not on a regular basis and it seems to work for me :) I think I have figured out that tea is a strong trigger for me. I know you read about it being one but golly.... it sure flares me up !! Now all I have to do is refrain from usin it LOL

OKD [INLINE]

amy s <AStief6917@...

I started using oil of olay total effects cream and cleanser and my skin has improved despite the AHA in the cleanser. I was worried about that. Must be the vitamins in the cream. It isn't cheap, but can be found at walmart. Amy S

To unsubscribe from this group, send an email to:

To make sure it didn't sound like I objected to you posting ...You can post them
if you want to or don't post if you don't want.. lol. I'm very flexible. LMBO
Dorla

Hey,
I would appreciate any information you have on Provigil. (Modafinil here in
Canada) I just started taking it, and was diagnosed a few months ago. My C.
is actually quite mild, which is why I beleive my doctor prescribed this
medication for me. Unfortunatly, it is really expensive. The problems I have
had the most are those with hallucinations and other such things that happen
while you are sleeping. My biggest problem, is daytime sleepiness. THis has
been a perpetrual problem for me since my early early teens. (I remembe
being about 14 and my teachers repeatedly reporting that i seemed overly
tired and sleepy al lthe time.) I can stay awake, sometimes when it gets
like this, but that's when HH kicks in and it gets really wierd.
That is the worst part of my illness. I never noticed it, until I started to
come off my Paxil medication. That was bizzare and frightening.
Anyway, any help would be great! My email address is:
lady_gwenevere@...
Love and Light,
Guinny
Guinevere Aislyn Aurora
Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/
}"{ Budderfligurl }"{

I started using oil of olay total effects cream and cleanser and my skin has improved despite the AHA in the cleanser. I was worried about that. Must be the vitamins in the cream. It isn't cheap, but can be found at walmart. Amy S

I didn't send them for you post necessarily..Just
sent some of my favorite pic's. I have lots of pic's
that don't have people in them too I think..lol.. Use
any of them how ever you want. Actually I send them
mainly so you could see what we look like and kind of
get an idea of our personality. And if we are in the
picture you know I didn't take it off a postcard.
lol...What did you think of the Grand Canyon? I probably
wouldn't have ever known what it was except points of
interest was announced as we flew out. Dorla

I honestly have to disagree with you my friend. If we don't somehow
approach the public with this disabilty that is continously swept
under the rug and is nothing more then a cosmetic illness, then we
will NEVER get the proper attention we deserve. I am still not quiet
sure why more people are not doing anything in order to get their own
stories out in the open. This has really frustrated me beyond belief.
I feel very stronly about shouting this from the rooftops, that this
is not just a disease we can hide from or cover up. Not only does it
cause disfigurment, but it also causes great pain, not only from the
suffer but from the family of the suffer as well... just sitting back
and wanting to be able to do something, but feels totally helpless
not knowing what to do.
I on the other hand WILL somehow come across to the media in one way
or the other, it doesn't matter how long it takes, but it would
certainly be very helpful if many more out there would take part in
this very important mission.
Please once again,I am asking each and everyone of you to PLEASE take
a few minutes out your busy day to write your stories and send them
to me. Let's ALL take a stand to at least try and do something about
it... after all, what do we have to lose?? LET'S NOT TAKE NO FOR AN
ANSWER ANYMORE!! I say!!
A even more determined person to get the word out,
Ann
unique_challenge40160@...

That makes sense to me since REM sleep is the "active" part
of the sleep cycle and involves muscle movements. With
Cataplexy, there is no muscle tone, or it is severely reduced.
To me, REM sleep and Cataplexy just don't seem to fit with
each other. Just my "novice" opinion. :o)

Thanks for the information A Webster, I'll go read the article
now.

Donna Keller

Thanks for the great time and education I got in
the chat today. Dorla, you really taught me a lot and
I wish your daughter all the best. Also, Dorla, I
got the pic's and thank you. Would it be ok, if I
don't use those with people in them, if I post one or
two on the club's homepage at some point? I will also
check with Angela to see if she has any comments about
it.<br

A new study has been published in the November, 2000 Journal
Neuropsychopharmacology, published by Elsevier Science Inc.
The authors are several doctors from STANFORD, including Doctors
Nishino and Mignot.
Basically it says that a recent study has shown that the mechanisms
which trigger Cataplexy are different from those controlling REM
sleep.
I suggest anyone going to the National Conference read this, its
probably what Dr. Mignot is going to talk about so be informed.
http://www.elsevier.nl/gej-ng/10/33/33/36/31/26/article.html
-Andy

Ann,
It sounds more like you developed multiple chemical
sensitivity with severe rosacia as a symptom. It's an
extremely debilitating and isolating situation- like
the woman in the movie "safer."
I think it is good to talk in support groups like this
one, especially for ideas concerning holistic,
allergen avoidance, and dietary remedies which
dermatologists don't specialize in.
But I question the value of publicizing rosacia as
identity politics: a new class of oppressed white
people. For lots of people becoming itchier and
uglier with age is the least of their problems.
Horror stories about how rosacia ruined my dating life
will look like the ridiculous self-absorption of the
baby-boomers. The demographics of rosacia itself
guarantees there will be private research by the
Bio-tech industry. It might be good to generally
publicize the condition of rosacia, like multiple
chemical sensitivity, or Gulf War syndrome - but with
rosacia I think the horror story tactic is a bit much.
A question for the list members: What is IPL? Is
this pulsed light treatment? How much should each
treatment cost in the U.S.?
Jory

Is anyone reading this living in Michigan? I would like to compare
notes on your experiences since I live in the Detroit Area.
On another note:
Everyone please remember that there are people out there who want
GHB, (the basis of the Narcolepsy Drug XYREM) to be outlawed
permanently. They don't care about the benifits to 100,000 sufferers
of 'N', they only see the 3 or 4 cute little teenagers who take to
much of the stuff or buy it from unknown sources, and die.
They paint all these sad pictures of people dying, and being addicted
to it, and make anyone who wants to research it look like
demons. "In 25 years as a police officer, I find this drug the
most dangerous in many ways. With most drugs we can predict the
effects of each dosage level with some degree of accuracy. Not so
with GHB. "
These quotes are taken directly from one of these websites
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<
"GHB - Gamma Hydroxy Butyrate
Why do people take it? To get high, to help them sleep, work out, to
relax, for self confidence. And among other things, GHB and its
analog products claim to fight stress and depression, stimulate
Growth Hormone, induce deep sleep, relieve anxiety, aid in muscle-
building, enhance sexual feeling, enhance athletic performance, and
combat aging. Beware........What you don't know CAN KILL YOU."
http://www.ashesonthesea.com/ghb/
SO PLEASE LET THESE PEOPLE KNOW THAT GHB MAY BE OUR ONLY HOPE IN THE
NEAR FUTURE!!!! BECAUSE A FEW ABUSERS ARE HAVING PROBLEMS
CONTROLLING THEMSELVES DOES NOT GIVE THEM THE RIGHT TO TAKE IT AWAY
FROM LAW ABIDING PEOPLE WHO REALLY NEED THE CHEMICAL.
-ANDY

Has anyone in this group used that before and did you get any
irritation or side effects using it? my Derm has prescribed it to me
since I told her my face feels itchy and stings at times. it's a
hydrocortisone cream to be used for 7 days. thanks
Lanisa

Papules Definition
Rosacea consists of red bumps called papules. These papules are usually solid and hard. The papules range in size from small bumps that resemble the measles or chicken pox, all the way to larger, penny-shaped nodules.
Inflammatory papules and pustules crop up and persist for weeks. Some papules show a small pustule at the apex, justifying the term papulopustular. The lesions are always follicular in origin, mainly in sebaceous follicles but also in the smaller and more numerous vellus follicles. Comedones do not occur. ---The deeper inflammatory lesions may heal with scarring, but scars are inconspicuous and tend to be shallow.---

Q:In regards to that particular section, someone was saying in an earlier email that Vitamin K may be used to get rid of scarring. Do you think Vitamin K would be beneficial in getting rid of the scars as a result of papules.

Thanks,
Nick

Andy,
My fiance' also has narcolepsy. He is in his last 2 days of GHB
since the study he was in lost its study. He called the Stanford
Narcolepsy center and the lady he spoke with said that Provigil does
not help with Cataplexy. She did tell him about Afexure (sp?), which
she told him would help with the cataplexy. She said this stuff was
second best to GHB.
Andy, you mentioned that you have information and resources. I would
really, REALLY appreciate any and ALL information that you may have.
We are almost at a point of desperation at this point. He has been
on GHB for almost 20 years and he is so afraid of going back to the
cataplexy that he had when he was falling to the ground. So,
anything that you have may help me to understand better, at the very
least.
Thanks,
Michelle

Its been about a week now of being on Provigil 100mg, I feel
refreshed every day, no side effects, no pain, no headaches, then at
3 pm I hit the wall and get tired again.
My doctor is also saying that Provigil is used for the treatment of
Cataplexy and refuses to prescribe anything else for my Cataplexy.
Has anyone found that Provigil Treats Cataplexy? It hasnt worked for
me. And all of my research says that Provigil is ineffective in the
treatment of C.
Also, If anyone needs any information or resources, I do have it
available. I also have FDA labels for medications and access to
press releases on Narcolepsy.
Thanks
Andy

You sure live in lovely country. I love mountains and oceans.. Don't know why
fate cast me here in Iowa...Dorla

I have been a rosacea suffer now for 6 years. I remember it almost as
if were just yesterday when it first began. Yet now as I look back,
it seems like an eternity.
In February of 1997 was when I first began my skin starting to lose
it's texture. My cheeks would get red for no apparent reason. At that
time the redness never lasted for long periods of time, but once I
finally decided to go to several
dermatologists, all of whom which diagnosed me differently... all
with something else other then rosacea. By the time I seen another
dermatologist, right before Christmas that same year, trying to get
to the bottom of this, to find out what it was,
then do something about it, my rosacea had moved into the next
stages. You see sometimes rosacea starts off mild
and can stay that way for many years and sometimes it can go from
mild to moderate or even severe without a
moment's notice.
To this day, I believe mine was brought on by tremendous stress which
was brought on by my only son when he was
in his early twenties. Although, I hate to admit this because he is
my only child, I think he is the responsible party for
causing my rosacea to come to the surface.
At last in December of 1997, I was finally diagnosed. I was actually
relieved, because by this time, when I visited the
doctor who diagnosed me with by now... full blown rosacea... now it
was no longer mild, but had gone to severe. Upon my visit with her,
my face was horribly red and had a few papules and pustules. I was
totally ignorant on the subject, but
put my trust in this particular doctor to help me. After all, she
said she sees cases of rosacea all the time. The good
news being, it could be treated with medication successfully. Within
my first appointment with her, she gave me a
prescription for metro cream, plus wrote me out a prescription also
for a very potent steroid and also an antibiotic called
minocycline. She explained how to use each of the prescribed
medications and then told me to give it some time and
come back for a follow up treatment in two months.
My husband and I stopped by the drug store on the way home and got my
prescriptions filled. That night I began my course of treatment,
which began my misery of horrible fears and nightmares that have
seemed on going ever since.
Within a weeks time my rosacea seemed as if it had disappeared
completely. I thought this medication was some kind
of miracle drug to take away that much redness so quickly. I was
actually fine upon my follow up in February. All the self confidence
I had lost completely within those months, I had slowly regained
again. Now I could finally get on
with my life and stop worrying so much about what was going on. All I
needed to do was use this medication for the
rest of my life and that would put an end to my problem.
By April of the following year, my face had gone from being what
seemed as if it had been under control to even much worse then when I
had gone to the doctor who diagnosed me the year before. Now I was no
longer in the severe stages but the very severe and final stages of
rosacea. I couldn't imagine what I had done wrong! I was still doing
the exact
same thing I had been doing all along, until one morning when I woke
up, my face was redder then an apple. I also
noticed, not only was my face incredibly red, but now I had all these
horrible little acne bumps all over my face, not only were they in
the areas of my face that were red, but I had them in other places
too. At this point, my face became
very painful to the touch. I could hardly stand to even wash my face
because it was so painful, plus every time I
looked into the mirror, I began crying hysterically. Also within
those few months, my rosacea had not only become so out of control
and had moved to such severity, but it had also moved to my ears and
now also my eyes.
I finally decided to do a little research on my own. Later
discovering that it was the steroid I was put on twice daily for 6
months that had actually caused the progression of my disease. I
looked and looked for other dermatologists not only in my area but in
the surrounding areas as well, but getting appointments were so
difficult and I needed an appointment right
away. I had to find out what I was suppose to do and come to some
kind of understanding how a doctor... any
doctor could put me on a medication without telling me and of course
being uneducated at the time, I didn't know, nor did I ask. I thought
after all, she was the professional, therefore, I was putting all my
faith in her and was doing
exactly what she had told me to do, never imagining in my wildest
dreams it would come to this.
Finally around June of 1998, I went to another dermatologist, who had
told me that my skin had literally become
addicted to the steroid and if I wanted things to improve, I would
have to completely stop any and all usage of this
very potent steroid. Needless to say, I followed his instructions and
did as he told me, never thinking it would
put me into the biggest nightmare of my entire life. I never thought
trying to get off steroids would be so difficult, but my skin had
become so addicted to it by this time, my face went into withdrawal.
Now my skin was not only redder then it was
before, but I had hundreds of tiny bumps all over my face. I was
still using the topical metro cream and taking the
oral antibiotic minocyline,but obviously stopped the steroid
completely. My face now was burning and stinging so bad I could hard
stand it. Also my skin had felt almost as if tiny ants were crawling
all over it 24/7.I lie in bed for 3 months day and night, not
sleeping, but crying from all the terrible pain.
I had always been a very easy going care free person my entire life,
never having any type illness or skin problems.
You know looking back, I never even had so much as a single pimple
when I was a teenager or even when I approached my twenties. I heard
that sometimes in your early twenties your skin can begin to change
and you could
develop some forms of acne.Thats what I thought was happening. But
then again, if it indeed had only been acne,
why was my face SO incredibly red and sore and felt as if it were on
FIRE... not to mention all those tiny ants
crawling all over my face day and night. For the first time in my
life, I had lost all means of my life. I was no longer
in control and my husband who I had married right out of high school,
had gone into denial and thought I was over
reacting. He didn't know how to handle my pain, therefore, felt
helpless to the point, of almost leaving me after
being together for 22 years.
For the next year I spent lying in my bed crying hysterically from
depression, anger from not knowing why I had allowed myself to get to
this point, blaming myself for allowing my life to come to this,
sleeping most of all my days away, never doing anything other then
punishing myself for something I now realize was not my fault.
It was up to the doctor who put me on the steroids to let me know how
harmful they actually could become over
time. Furthermore, it was also up to the doctor who told me to come
off of them immediately, to go off of them
slowly so my skin wouldn't react in such a manner.
After about 6 months passed, and having serious thoughts of taking an
overdose, then on top of that having a terrible
nervous breakdown, and admitting myself to an instution for the
mentally insane. Although, I knew I wasn't crazy, my mind was telling
me otherwise. I needed help, so I was going to get the help I so
desperately needed before it
put an end to my marriage.... and maybe my life as well. It was
actually July 3rd of 1999 when I admitted myself into the hospital.
After talking to a therapist there, he told me he didn't think I was
in the least bit crazy. However, to calm my nerves of depression and
to keep from having suicidal thoughts, he put me on an anti
depressant which I knew I definitely
needed. I spent one night in the hospital, and then was again
revaluated the next day by the same therapist, called
my husband and told him I was fine and ready to come home. What a
joke that was! I was definitely not ready by any means to leave the
hospital.
From that July until the following year, I was completely confined to
my house. Even though when I was first diagnosed I wouldn't leave the
house in fear someone would see me, then when things became even
worse, I couldn't leave my house even if I had wanted to because of
all the pain I was having.
By now my eyes were getting worse by the day. I had gone to see as
many ophthalmologists as dermatologists, at last found one who told
me I had ocular rosacea and that my eyes were so incredibly dry after
running a test on my
moisture level, letting me know I had little or no moisture at all
whatsoever. My eyes were so painful I could barely keep them open.
This particular ophthalmologist tried all sorts of different
treatments to try and get my eyes to
produce the tears that was needed to give me at least some relief. By
looking at them, they looked perfectly
normal, but for eyes that looked normal, they certainly by far did
not feel in the least bit normal to say the least.
Now not only was my face miserable with redness, terrible acne,
burning and stinging 24/7,having to depend on a fan blowing on my
face all day and night, never being able to leave the house for
anything, not even being able to take
care of everyday chores around my house because I had come to realize
that not only stress could cause such
terrible reactions, but so could heat. Nevertheless, I had to go out
into the world to continue to find an answer that
would help my eyes. I was terrified if things had worsened, that
evidently my vision would be lost forever. That's
when my eye doctor finally decided to put punctual plugs into both
upper and lower tear ducts. Then he sent me
almost immediately to a cornea specialist to see if I had any
additional damage to my corneas.
Fortunately, a couple months after seeing the specialist and having
the plugs put into my tear ducts, my eyes began to slowly improve.
I had gone from having little to no moisture in my eyes to having at
least enough to keep my eyes at a comfortable
level. Whereas, on the other hand, my face was still a complete
disgraceful mess and I simply refused to look at
myself in the mirror. Funny how when you try so hard to keep yourself
from looking at yourself, the more you want
to look, if for anything other then to see if things had worsened.
All in all, I was completely and totally helpless,
housebound and a total invalid from doing not only outside
activities, but from continuing my household duties.
Some of the things that would bother me were mostly anything that was
heat related. I remember the first summer I had this disease, my face
was on FIRE all day and night no matter how many fans I kept blowing
on me, which I obviously did to try and alleviate some of the
agonizing pain. Although, our house has central air conditioning, it
was still not
cool enough in the bedroom where we slept, which meant my husband had
to buy an additional air conditioner to try and keep me even cooler
then most. I had to keep my AC set on approximately 68 degrees
throughout the house, and even colder in the bedroom when we slept,
not to mention having to have my fan blowing on my face at night, if
and when I slept. I would normally lie awake crying from all my pain,
but mostly punishing myself for allowing
things to get to this point.
The things I could no longer do I had often taken for granted before
all this began. I was 40 years old now and it was
time for my husband and I to start living our lives after raising our
son, since he was now on his own. Obviously
that's when not only my life came to an immediate halt, but my
husband's as well. Three long years had passed and
I was still suffering from this horrendous disease, still not knowing
what steps to take to make matters better.
Each and every doctor I seen thereafter told me to just avoid all my
triggers and I would be fine. Now that I think back, I have to
actually laugh at the suggestions the medical professionals had
given me thus far. Avoid my triggers!!!!
How do you do that, I often wondered when you literally could not do
anything...nothing at all. I was unable to function as a living
breathing human being because everything that surrounded me had
something to do with heat. It didn't matter if is was the sun just
coming into my windows, the house not being cool enough at 68
degrees, if the clothes dryer was running, the oven was on, which
anymore it rarely ever was, if the stove was on, again, not very
often,
eating any sort of warm meals, taking warm baths, drinking any warm
liquids, didn't matter what they were as long as
they were warm or hot, you could forget it. No more going out doors
in the summer months, no more enjoying all
the activities outside I had once enjoyed such as taking walks with
my husband, riding our bikes for exercise,
playing tennis as a couple, gardening, hiking, sitting out on a warm
spring or summer day.. all those days were long gone. All my meals
had to be eaten cold, after preparing them in the microwave, eating
sandwiches, or salads for what
seemed like a lifetime. I actually had dropped so much weight, I
looked as if I had an eating disorder or even
worse... cancer.
I could no longer bend over to pick anything I had dropped onto the
floor, I couldn't sweep the floor unless my husband was home to hold
the dust pan, I could no longer wear shoes that consisted of tying, I
could no longer
smile or laugh, which I rarely did anyway because of the constant
pain, crying was a nightmare, which became a tremendous part of my
life at
that point... an everyday thing for me... constant crying and
worrying, not being able to figure any of this out.
I couldn't even so much as take out the trash or go to the grocery
story, shopping, get my
haircut, visit family and friends, go to church, restaurants, not
even so much as lie next to my husband in the
bed we had shared for so many years. Hugging and cuddling was
definitely out of the question, which meant no
kissing and without a doubt... no sex life... nothing!!
I could no longer dry my hair, use a curling iron, do any cleaning
around the house, cook, do aerobic exercise, that had always been a
BIG part of my life for as long as I can
remember, be around the clothes dryer, iron my husband's shirts for
work, sleep at night because I literally had
to sit up if and when I did sleep. I would have done anything to have
kept my body temperature at a comfortable level by using fans, ice
packs, wearing light clothes, even in the winter months, chewing on
ice chips, eating ice cream,
even once a time or two, I found myself sticking my head into the
freezer just for some relief. For goodness sake, I couldn't even
brush my teeth without enduring terrible agonizing pain. Of course
there were things I had to do in
order to keep my sanity such as bathing in cold water, washing my
hair in cold water, trying not to get any of the
shampoo on my already sensitive skin, washing my face in cold water,
never knowing what to use on it while washing it
in fear it would make matters worse, brushing my teeth had almost
become a chore as well. Mouthwash would even
cause me to react in some way because of the alcohol. And this was
done to maintain my sanity???
Now I could no longer live my life, participate in any kind of
activities, have an intimate relationship with my
husband, hug any of my family members when they came to see me, my
own son, when he did come around,
never wanted to hug me because he thought I was contagious and sooner
or later he would get this horrible
disease as well. I was restricted from certain foods, drinks, no
caffeine, no chocolate, no sodas, a lot of supplements and
medications would also cause a lot of problems, not to mention soaps,
cleansers, moisturizers, sunscreens, makeup... long gone were the
days of this women ever wearing make up again. Shampoos,
conditioners, hairsprays, cologne and even my husband's after shave
which he had to stop wearing altogether. Even cleaning products would
almost cause problems. This was not living...this was
only existing! Suffering daily, living my so called life in no more
then fear, being afraid to even talk on the phone or sleep at night.
What was left?? My mind was constantly racing, trying to figure out
this mysterious disease that had
taken my life away at the age of 40.
I know longer now have rosacea, now it was so severe it was
considered a vascular disorder of the blood vessels. And if that
wasn't already bad enough, my very best friend of 13 years has
abandoned me completely simply because I
could no longer participate in the things she wanted me to do. She
got so tired of my desperate pleas for help
when I often would call her crying, just to have some one to talk to,
especially on those long lonely days when I was
contemplating suicide. She began ignoring any and all of my emails,
then decided to finally end our friendship,
which obviously threw me into more of a mental state.
Since I have become a member of a support group over the internet,
which later I learned how to research and
educate myself. Nevertheless, every time I poured my heart out to
this large group of people, people I didn't even know, I would have
so many
responses and support, I would sit at my computer and weep, that at
last someone I could talk to that actually
understood. There were so many people out there that were going
through the exact same things that I had been through and were still
going through.
In all conclusion, my husband, although distraught with anger and
frustration as I had been for so many years, became my pillar of
strength. The first year we were on shaky grounds, I never knew from
one moment to the next if he would walk out on me, leaving me alone
to FIGHT this battle alone. Our religious faith has grown like I
never thought imaginable, and the best news of all, I finally found
the doctor who was able to offer help... although, difficult as it
has been these past several years, he has promised in all sincerity
to NEVER give up on me, but mostly he told me to NEVER give up on
myself.
The reason for writing this very important story to you, is to let
you know the importance of this horrible crippling disease, that most
doctors know very little about. I thought it was about time my story
had gone public, in hopes that
new treatments, medications, and possibly even a cure will be in the
very near future.
We as suffers can no longer suffer alone, nor in silence. We MUST ALL
take a stand and allow our stories to be heard
one by one.
I invite whoever is reading this letter, to please take the time to
check out the rosacea support group at: www.rosacea.ii.net just to
let you know exactly how many suffers are actually out there begging
for help.
To sum it all up, I honestly believe getting this story as well as
others out into the public would be the making of a very good story
to be broadcasted on television. I am not asking, I am simply begging
for you to give this a lot of consideration. I would even be willing
to do a personal interview. Please help us to WIN this terrible
battle!!
Ann Blanton

Another picture change... hope this helps you
midwestern and eastern members warm up.. this shot was taken
recently a couple of miles outside Loveland Colorado,
where I live. I believe it was about 45F at the
time.<br
:)<br

For my Canadian Friends. The National Sleep Conference. Too bad I gotta work that day! Blearg!

http://www.geocities.com/HotSprings/1837/agm00.html

BB,

Guinny

Guinevere Aislyn Aurora
Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/

}"{ Budderfligurl }"{

Why Thank you Angela..That is nice to hear...Dorla

Hi Gang, Let me just tell each and everyone of you what I am trying
to accomplish, and so far the turn out has been increible.
For the past 3 weeks now I have asking for everyone to take a few
minutes out of your busy day to sit down and write your own
individual stories and send them to me, which i will in turn allow
them to be used for public awareness, sending them to ALL primetime
tv shows such as 20/20 good morning america, 60 minutes, etc.
In your stories, please include exactly the kind of impact this
disease has had on your lives, relationships, whata your triggers
are, how it has affected your social lives with friends and family,
if its affected your jobs, schooling, etc.. include whatever you
think might interest the public.
Our very own Dr.Nase has also becomee involved with what I've been
trying to achieve. Also another women from another support group, is
sending all the stories I recieve to the Oprah show and will be
sending those stories by the end of the week.. so if any of you who
are willing to participate in something that WE both strongly believe
in, please send your stories to me as soon as possible if you wish to
have your story sent to Oprah. She has already put together a
wonderful presentation package with doc Nase's picture as the cover
page... it's quiet remarkable to say the least.
If you are to busy to send your story by this week, don't worry about
it, I am going to try and get as many as possible in the very near
future from all those who are willing to take part in a very
important mission.To date I h ave already recieved over 70+ stories,
so please... one and all, take the time to sit at your computer, we
all spend lots of time on our computers as it is doing research and
espressing our true feelings to everyone else, let's write down how
were feeling to the public and let them know how we have to suffer on
a daily basis...how we are unable to use all sorts of products,
soaps, cleansers, moisturizers, make ups, sunscreens,
shampoos,conditioners, hair sprays, medicaitons, supplements, foods
you can not eat due to your condition, ETC.
I am hoping for an even BIGGER response from ALL of you... so please
send those stories so we can help educate the public, let them
realize this is not just a skin disorder that can be covered up
cosmetically...that it is a BIG deal to ALL of us who have it, and
hopefully we will be able to make a difference, in hopes of new and
better txs, more research and possibly even in the near future...
even a cure.
The reason my friend is sending off her stories this week, is because
this month has been dedicated to Rosacea national awareness month
from my understanding... and since Oprah will be doing rerun shows in
May, she thought that this month would be the perfect time to
hopefully air a show on our subject matter.
Also for ALL of those who take part, please send along with your
story a waiver allowing your story to be used as public knowledge,
just send your stories to me, along with a written statement in a
seperate email saying that you allow your story to be used as public
knowledge... sign your first and last name, date it... and that's it.
If anyone of you wish to remain annoymous... that's ok too... but you
MUST send in a waiver if you wish for your story to be out in public
awareness.
This is something I have very strong feelings about and believe, once
the public gets lots and lots of stories...which so far are coming in
right and left, I think we can ALL make a difference.
There are a lot of people out there who have wonderful stories inside
of you, please share them with us all, include that waiver and
together I'm certain we can make a difference.
I on the other hand will print off the stories and or forward them to
my friend if you are interested in having your story sent to the
Oprah show... I will personally take care of all the postage include
upon sending them to other primetime networks sort of my way of
giving a little something back.
TOGETHER WE CAN ALL MAKE A DIFFERENCE TO FIGHT AND WIN!!! but we ALL
must take part in this very important mission.
You can send your stories to me Ann at:
uniquechallenge@... or unique_challenge@40160@...
PS I truly expect the turn out to be incredibly high. Oh and by the
way everyone, the sooner the better. What wait... when we can try and
accomplish this NOW!!
I will send my story following this email for any of you who are
willing to take the time to read... I strongly encourage each and
everyone to do so... so you can see exactly what I am talking about
and how sevve a suffer I had been at one point.
Tori, my new friend, I will email you personally within the next
couple days. Please bear with me for now, I have been incredibly
swamped with all the letters coming in, plus I had an aggressive IPL
tx yesterday, therefore,I am still trying to recover.
I hope to get lots and lots of stories soon!
A friend who is more then just determined to get the word out...some
one who really cares!
Ok, my story will be next.

Hi Leslie,
Glad you have joined us. I just received my
N diagnosis this past June, I have a 7yr old
and am sure I had N when pregnant with her.
I worked as a server in a popular restaurant
the whole time I was pregnant, which worked
for me because the hours were shorter and
the money was decent for part time work. the
rest of the time i pretty much ate and slept.
I gave myself permission to sleep whenever
I wanted because I was pregnant and this
felt much better than being down on myself
because I was sleepy all the time-I had an
excuse! I managed to work and get through
with out meds, but was a struggle as usual.
There are others struggling with the pregnancy
and meds delimna so hopefully you will receive
some helpful info at this site re: that issue.
My doc just said don't take meds if pregnant
because they "just don't know" about repurcussions
at this point. Many are not satisfied with this
answer and are looking further. Good Luck and
keep us posted.
Stacy

Hello all:
It looks like I picked a popular time to join! I've been trying to get a
diagnosis for my excessive sleepiness for 2 years and I finally got one
yesterday -- Narcolepsy. I haven't had a chance to read much yet, but it does
sound like it fits much better than all the things I don't have (e.g.
thyroid, CFS, etc). Since I'm pregnant, they can't do the MSLT but my
polysomnogram showed very distinct REM disturbances as well as quick onset
REM.
So I manage to be alert about 6 hours a day. I'd love to find anyone else who
has gone through pregnancy like this -- I have no idea when I'll be able to
start drugs as breastfeeding is very important to me. I haven't been able to
keep a job for nearly two years also, so finding out that there isn't
anything I can do to help me make money is an extra blow I didn't need.
I look forward to hearing all of your wisdom.
-- Leslie

Hi Nick,

I have the breakouts, and too me they are way differnet that regular acne. The sores as I call them are really big and ooze for many days. They itch and get crusty. They never seem to have anything in them like regular acne, no urge to squeeze as there is noting there. Mine also last forever, like several weeks. I have had my derm inject them with cortisol with no luck. Hope this helps. I would be interested to hear if others have the same kind:)

Lora

My prayers go out to any of our members who live in the Seattle area...I hope
you had no injuries and that you had little or no damage!!<br

In a message dated 10/14/00 6:41:02 AM Central Daylight Time,
narcolepsy@egroups.com writes:
I am 8 weeks pregnant. While I am fortunate to have no morning sickness I
still feel quite lousy -- some days (especially migraine days) I would rate
as very bad.
That is good (and welcome) news. I called my mom last night to tell her of my
diagnosis and it didn't phase her a bit. In fact, she'd started to wonder if
she is narcoleptic (as do I), and she says her mom and mom's mom were both
famous for falling asleep during conversations. Her mom was very overweight
and could have had something else like apnea, but it looks even more like
this is the correct diagnosis. Also, my mom said the same thing you just did
about pregnancy. After the first 3 1/2 months, she felt better than she had
at any other point in her life. She says her mom would live to be pregnant
(Her mom was pregnant at least 6 times). So I am allowing myself some hope
that I can get a 6-month contract job and be able to do the work. I sure
could use the money!!
Thank you for your quick reply and support. I've been reading the archives
and have learned a lot and been given a lot to think about. I'll have more
questions soon, I know.
Leslie :)

Hi there everyone, geez some leader I
am!!!!<br
had something bad happen to me..I was away last
weekend and when I came home...My son had friends over
that I knew about..anyway..I realized that people had
been in MY bathroom..<br
there..and guess what??<br
me was stolen!!!!!!<br
trusted all of his friends but one came over we never met
before.. he was the one that went in there..so I had
reported it to the police...but in turn parents were good
about it..but then later it caused reprocusions ( thats
spelled wrong )...So I cancelled the search..I tore my
house apart from top to bottom but nothing..this is
killing me..no one is allowed to be in my home again
unless I'm home..So again..a lesson is learned
here..never trust no one!!! That you dont know well, and
never leave valubles out for them to take..<br
why I didnt make it to the session on sunday..Ray is
it going to be every Sun?? at 3:30? I would like to
join in for it..<br
feel I'm letting you all down..My life is getting busy
and things around the house need to be done..and its
just me that has to do it..It got put aside because of
my neck surgery...<br
stuff...<br
Thanks for keeping it going with Ray..<br
All,<br

Dear Clynch,
I too have trouble taking amphetamines, because I am diagnosed with an
eating disorder and these medicaitons can sometimes severely reduce your
appetite (not that I owuld mind, but my non ED mind tells me that it's a
good idea to stay away from them). I also am concerend about taking them
because of their addictive qualities. I tried Ritalin for a while, and have
tried Dexedrine in the past before I was diagnosed with Narcolepsy. Ritalin,
unfortunatly, made me severely manic and disrupted my life too much, with
it's side effects. I am now taking Provigil (Modafinil) and it seems to
work. The efficacy of the drug is better and it has little if any side
effects. Unfortunatly, there is still a paton on the drug and it can be
expensive to purchase. Since it works well for me, my mom has offered to
foot the bill for the drugs. I am waiting for it to be covered by my
provincial drug coverage so that it will be more available to me in the
future. Until then, I am at the mercy of my family to help me out. Anyway, I
knwo that this drug is highly recommended by many sleep disorder specialists
and by PWN alike. So, ask your doctor about it, or visit their website, if
you have a chance and take a look to see if it's for you.
http://www.provigil.com/ I believe, is the right address. Correct me if I am
wrong, please. :o) Take care of you, and good luck!
Love and Light,
Guinevere
Guinevere Aislyn Aurora
Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/
}"{ Budderfligurl }"{

Please tell us about your tips, suggestions, advice, etc,

Take care Tori

unique_challenge40160 <unique_challenge40160@...

Hi Everyone, I just joined this morning and am so glad I did. I just
wanted to introduce myself to let you know a little bit about me.
My name is Ann and I have had rosacea for 6 years. Although,mine
began to be somewhat mild, it progressed very rapidly within a 6
month time frame. Within 6 months it went from being quiet mild to
VERY severe. For 3 long years, I became housebound, depressed, angry
at myself for allowing it to come to this point, (which by the way I
know now it wasn't my fault) and lost my best friend of 13 years due
to this disease.
I also have the ocular component of this disease, so my eyes have
obviously been affected tremendously as well.
Since this has all happened to me, I have learned a lot throughout
the years, have been educating myself by doing a lot of internet
research, have met a lot of new friends via the net from other
support groups, and have found a faboulous doctor who has been doing
wonders for me to help me regain my self esteem again.
Not only am I here to learn even more from ALL of you, but I want to
HELP ALL of you as well... sort of my way of giving a little
something back.
I have a lot to offer those of you out there who are fairly new to
this disease, may have lost any and all hopes of ever being able to
cope, don't think your life will ever be the same again?? PLEASE let
me offer my support as well as my HELP!!
I also have LOTS of tips, suggestions, advice, etc, for anyone who
might be interested.
In conclusion, I am SO glad I found this group and hope to get to
know each and everyone of you soon.
Ann
unique_challenge40160@...
To unsubscribe from this group, send an email to:

I have tried the Vitamin K.. I thought I posted that. The part that I mean about massaging is just that.... It doesn't necessarily matter what product you are using, it's the act of massaging that is in question.

I didn't use Vita K for moisturizing at all. I was using it to do to my facial spider veins the exact same thing that was posted in the claims such as it strengthens the veins, stops them from leaking , etc, etc.

I'm glad if it works for you. I know that doctors use/used it for reducing scarring etc. You say your doctor HAD it?? There is no cure for it is there?

anyway... ask him about expectant mothers and ppl on warfarin using it?

I do a fair share of trial and error and research online too.

unique_challenge40160 <unique_challenge40160@...

Hello friend,
I'm sorry you disagree with me. However, the vitamin K cream is not
for moisturizing, at least that's my understanding. I have a lot of
hyperpigmention from having IPL and other lasers, and its worked
wonders for me. Do you use vitamin K to moisturize? If so, its
possible, the vitamin K could be too heavy on your skin. It's not got
moisturizing your skin, but used mostly for bruises and to ridden
hyperpigmention.
Ann
PS Furthermore, I'm not exactly sure what you don't understand about,
the rubbing in of the rejuvenating cream or the vitamin K cream.
Please explain! Vitamin K and rejuevenating cream are two completely
different things, one is to moisturize and the other is to ridden
bruises or hyoerpigmention skin. My doc is the best in the country,
also not only constantly does reserch on this disease because he had
it too, but he highly recommends what I've mentioned above. You
should at least give it a try... you might be very well pleased.
But then again what works for one, might not for someone else.
Ann
To unsubscribe from this group, send an email to:

Hello Everyone,
I just tried to get to this site on my
computer at work and the site has been
firewalled by the organization I work
for. Therefore, I cannot get to the
site, but may be able to still post by
using the email address, I am trying this
to see if it works. I still get messages
posted to my email-i think- but if you
guys don't hear from me for awhile this
is why. This makes me sad; I look forward
to checking the posts everyday and
communicating with all of you. I still have
access to computers every now and then so
I won't dissappear forever.
Thanks for all you do.
stacy

Hello friend,
I'm sorry you disagree with me. However, the vitamin K cream is not
for moisturizing, at least that's my understanding. I have a lot of
hyperpigmention from having IPL and other lasers, and its worked
wonders for me. Do you use vitamin K to moisturize? If so, its
possible, the vitamin K could be too heavy on your skin. It's not got
moisturizing your skin, but used mostly for bruises and to ridden
hyperpigmention.
Ann
PS Furthermore, I'm not exactly sure what you don't understand about,
the rubbing in of the rejuvenating cream or the vitamin K cream.
Please explain! Vitamin K and rejuevenating cream are two completely
different things, one is to moisturize and the other is to ridden
bruises or hyoerpigmention skin. My doc is the best in the country,
also not only constantly does reserch on this disease because he had
it too, but he highly recommends what I've mentioned above. You
should at least give it a try... you might be very well pleased.
But then again what works for one, might not for someone else.
Ann

Hello Leslie and all other "N" Friends,
Leslie:
How many months pregnant are you? I received my Narcolepsy diagnosis about a
year
after my son was born, but I had Narcolepsy for at least 15 years prior to that.
Anyhow,
prior to receiving my Narcolepsy diagnosis, I used to take stimulant herbs in
order to
function at work and at nursing school. When I learned I was pregnant, I
stopped every-
thing (including smoking) and for the first 5 months I felt horrible. But, I
think that was
mostly due to my SEVERE morning sickness which lasted about 3 months STRAIGHT.
After the morning sickness lifted, I felt absolutely wonderful! I wasn't sleepy
all of the
time like before and I even worked many 10-12 hour days on my feet as a nursing
assistant in a busy hospital. I never even drank coffee. I have to wonder if
the hormones
of pregnancy helped to energize me. I have never researched this, but maybe the
baby's
hormones - circulating within my bloodstream - helped somehow to temporarily
replenish
the hypocretin-1 which I was lacking within my own brain.
I have about $2,000 worth of anatomy and physiology, science, general, pediatric
and
maternal nursing textbooks so I will try to find info on this subject when I
have got some
extra time. At least my time and hard work in nursing school won't be a total
waste......
if I can help someone, somehow. Thanks to Narcolepsy, I failed nursing school
just 3
months prior to my graduation date - where I would have been awarded with an
Associate Degree In Nursing.............I would have been a registered nurse,
living my
dream and making a good living. I had been going to college for 5 years and
earned a
total of 101 credits......all geared toward my nursing degree. Bummer......the
biggest
bummer of my entire life. :o(( Thanks for listening everyone........I hope the
pregnancy
info helps you Leslie.
God bless you all,
Donna Keller

So sorry to miss the chat. We just nearly slept the week end away. Maybe I got
caught up finally. Will sure try to make the next ones. Dorla

Carleen--
Like you, I have found that rosacea dries my skin terribly. In his book, "Beating Rosacea" Dr. Nase recommends taking Flax/Borage Oil for ocular rosacea. I took his advice and have found that one very nice side effect is that my skin is much less dry.
It might be worth your while to check into getting some of these capsules at a local health food store or vitamin shop.

Hello all:
It looks like I picked a popular time to join! I've been trying to get a
diagnosis for my excessive sleepiness for 2 years and I finally got one
yesterday -- Narcolepsy. I haven't had a chance to read much yet, but it does
sound like it fits much better than all the things I don't have (e.g.
thyroid, CFS, etc). Since I'm pregnant, they can't do the MSLT but my
polysomnogram showed very distinct REM disturbances as well as quick onset
REM.
So I manage to be alert about 6 hours a day. I'd love to find anyone else who
has gone through pregnancy like this -- I have no idea when I'll be able to
start drugs as breastfeeding is very important to me. I haven't been able to
keep a job for nearly two years also, so finding out that there isn't
anything I can do to help me make money is an extra blow I didn't need.
I look forward to hearing all of your wisdom.
-- Leslie

To those of you who offered suggestions and advice, thank you very much!
:-) I will look into the brands mentioned. Its not that the make up
irritates my skin, its just that its so dry that whatever make up I
use, no matter how small of an amount, it just settles in the dry areas.
Carleen

Well, he didn't say it wouldn't be a problem, but he seems to think I won't
have too much difficulty with it. He only wants to put me on the dexies for
a while. He said that seeing how my body reacts to the dexies will help him
decide which other meds will be effective.
Huh...what you said about cataplexy is similar to what my doc says. Lots of
people don't know they have it. Seems that a lot of people learn to suppress
their emotions over time so that they don't ever get really excited
emotionally. I suspect that's the case with me. I may not get cataplexy much
because I don't react strongly to anything.
Thanks for your kind words!
Clynch
Hi Clynch,
My name is Stacy, I was just diagnosed with n
in June of this year. I didn't think I had
cataplexy either, but come to find out I do.
It isn't always the text book fall down to
the ground thing, anyway regarding meds,
i take dexedrine and it helps tremendously.
However, it is an amphetamine and is considered
potentially addictive. Sounds like if you have
had to fight addiction to amphetamines already,
this would not be a good choice for you. So I
am confused that your doc said it would not
be a problem. Anyway, welcome and keep us posted.
Marilyn was partly right. There are a lot of people
here who are very informed and can answer questions
about n. She is also one of these people. She has
helped me a bunch already. Good Luck!
Stacy

Hi.. here is a very good web site that is loaded with information.
Have you been diagnosed with Rosacea for sure?
Keep posting :)
OKD

Hi, this is Michelle again. I have been sifting back through some of
your previous posts and found the link to the talkaboutsleep.com
website. This is very interesting. It sounds to me as though Jeremy
does, in fact, have narcolepsy. Maybe I misunderstood what he said
to
me about it. So, can someone tell me what prescription drugs are out
there to treat this? Is there anything that is natural that won't
cause side effects, or his body won't get used to and stop
responding?
I would appreciate any advice from those of you who are living with
this.
Michelle

Hi, I was just curious if someone who knows, could tell me if papules that you get from rosacea are similar to everyday pimples, if not what are the differences.

Nick

Hi Clynch,
My name is Stacy, I was just diagnosed with n
in June of this year. I didn't think I had
cataplexy either, but come to find out I do.
It isn't always the text book fall down to
the ground thing, anyway regarding meds,
i take dexedrine and it helps tremendously.
However, it is an amphetamine and is considered
potentially addictive. Sounds like if you have
had to fight addiction to amphetamines already,
this would not be a good choice for you. So I
am confused that your doc said it would not
be a problem. Anyway, welcome and keep us posted.
Marilyn was partly right. There are a lot of people
here who are very informed and can answer questions
about n. She is also one of these people. She has
helped me a bunch already. Good Luck!
Stacy

Hey..we finally got something going .. about
time.. I have thought about just leaving the club but
find myself going back to it time and time again. It
was my first club too and I just seem to not want to
give it up. A lot of the old members are still around
and post in other clubs but never seem to visit or
post to it. I sent out X mas cards to all the members
that had thier addresses listed in hopes that they
would check in and maybe get it going again. I received
thanks back by e mail and a few posts but then it fell
dead again. If you can and have the time...E mail me
the time and place of the chats for I'd like to do
that to but seems like I forget them..Not to say that
even if you do I'll remember them then to.. lol Dorla

Clynch, now that you have explained your problem, I will send you the link to
Stanford. Their web site has information on N as well as all of the
medications and recommended dosages. Maybe someone else here can help you in
other ways. Good luck. Marilyn

In a message dated 3/8/03 6:39:31 AM Eastern Standard Time, brady.barrows@... writes:

I work on a farm and when I am exposed to poison ivy I react horribly. It is
absolutely the worst break out all over my body. Must be rosaceans are very
senstive to poison oak or ivy?

I am very allergic to poison ivy and get what my doctor terms a "systemic" reaction, where the rash goes from one spot on my arm to huge patches all over my body within 48 hours. I have a standing invitation from her to just come in and get a prednisone shot as soon as I notice the rash starting, rather than waiting to see if it spreads, because it usually does.
There is a product I have had some success with this past year to stop the spread. It is a cleansing lotion called TechNu and can be found in the first aid section of a your drugstore. If you wash with it the very first time you are exposed or see a bump pop up, it can clean off the urushiol pretty effectively. This past summer was the first time I got a few spots of poison ivy and was able to stop a further spread by washing twice a day with TechNu. It's worth trying!
Heidi

Thanks for the welcome, Marilyn. I'm hoping some others will share their
stories about the use of various drugs for treatment. When I first talked to
my doctor and he said Narcolepsy was treated using amphetamines I thought
the world had dropped out from under me because I struggled with an
addiction to amphetamines for 5 years before I was able to get off of them.
I know I can't take them anymore. He says the Dexawhatever will not be a
problem for me, though. That's why he and I are exploring different
medication options.
Thanks again!
Clynch
Welcome Clynch! Keep us posted once you have your test. I think we can all
identify with the feeling of hope you are holding onto. If you have
questions, ask away...there are a lot of very knowledgable people here who
will do their best to answer your questions. I'm not one of them. lol but
wanted to welcome you to the group. Marilyn

I would love the chat.. Sunday's would be good
for I seem to be aviable most of the time untl I say
I am and then about a million things come up to
interfer with what I had planned. Concerning the "W"
club.. Gee.. Ray what a charmer.. I bet you could talk
your way out of being hog tied. lol Dorla

Welcome, Ann--
And thanks for the offers of help. Have you found anything that helps relieve your ocular rosacea. I fight it every day, but haven't made any permanent progress so far.
It's heartening to hear that, even in severe cases of rosacea, the right doctor can help immensely. Whatever you can pass along would be most appreciated.

Anyone open to a Sunday afternoon romp in the chatroom?? If so, what time would
be convenient for everyone?<br

Welcome Clynch! Keep us posted once you have your test. I think we can all
identify with the feeling of hope you are holding onto. If you have
questions, ask away...there are a lot of very knowledgable people here who
will do their best to answer your questions. I'm not one of them. lol but
wanted to welcome you to the group. Marilyn

Well Ann, I'm not sure that I agree with you on the massaging part. I tried Vitamin K cream , which is supposed to be massaged in and also was supposed to strengthen the blood vessels....... well guess what? I ended up with a horribly painful face ! The veins did not receed at all. As a matter of fact they were more prominent.

unique_challenge40160 <unique_challenge40160@...

Hi Linesa,
I hope I've spelled your name correctly... if not, except my
apoligies.
My my past experiences trying all sorts of cleansers and
moisturizers, to no avail, I have found that using a mild... yet
gentle cleansing milk to cleanse your already very sensitive skin. It
doesn't cause any irriation, and washes off very easily without any
residue.
As far as moisturizers, a rejuvenating cream is nice and soothing to
apply to your face afterwards. Using a small amount on each cheek,
nose, chin, neck, forehead, etc. massage in thoroughly. Not only does
it moisturize your dry skin quiet well, but it also helps to
strengthen any and all new blood vessel growth.
Hope this helps!
Ann
unique_challenge40160@...
To unsubscribe from this group, send an email to:

Hi, Ed,<br
you visite Ireland..or did you live there? I have
wanted to go there for a long time and one day I hope to
realize that dream...maybe after I realize the dream of
getting a pilot's license I can fly myself there...NOT!!
Anyway, good picture of you!<br

Kate
I am considering this product what is the name of the foundation and blushers...you say it covers the redness really well..does it cover blemishes well also cuz that is my biggest challenge right now I am using Prescriptives and it doesnt seem to cover some of the red pimples too well. thanks so much.
Lanisa

Hi, my name is Michelle. I am new to the list. I do not have a
sleep
disorder, but my fiance', Jeremy, does. I am not sure whether or not
there is a name for his disorder. He does not go through the regular
cycles of REM sleep througout the night. He goes into REM sleep
within 2 minutes of falling asleep, then never goes back in. He has
a
lot of problems with cataplexy, which really scares me sometimes.
Apparently, his doctor said that he has to have narcolepsy, but he
doesn't think that he does. Anyway, he will be 31 next week, and has
been on his medication, which he calls "gamma" since he was in junior
high. He has been a part of some experimental thing through a sleep
center in Cincinnati. Well, today he got word that they have cut the
funding for his medication, which is not prescribable by any doctor,
since it is not FDA approved. I am so scared. He told me that if he
is without his gamma for 3 or 4 days, it is going to be difficult for
him to even go to work! When he was diagnosed, his parents were told
that he wouldn't live to be 30, or if he did, he'd be a vegetable!
What do we do??? I am so afraid of what is going to happen to him!
We live in Colorado, but he would pretty much go anywhere if there
was
anything else he could do. Can someone tell me where we can go to
find help?
Thanks,
Michelle

Oh Ray!! you will bring on the worse case of
spring fever.... lol...Hope everyone is fine and also
hope that Iowa will soon get over it's ice and snow.
We had a tiny bit of snow yesterday but ice came
with it. One good thing about yesterday, I imagine
candy shops and florists had a good business. Talk
about love. Since I can't seem to get my diabetics
under control and they keep doubling the medicine and
threatened to have me go on shots....I got an orange and
bagels for my Valentines .. Now, that is taking
thoughtfulness to the limit..lol Dorla

Well, I went and changed the picture again...lol;
Angela, you may regret giving me the power to do this!!
:)<br
snowstorm is headed our way... and I thought this might
help warm me up since I don't have a honey to snuggle
with...lol<br

I have found that bare escentuals work well for me as make up. It is mineral based and covers the rendess I have very well. It is also very gentle and I have never stung or broken out from using it. It is available on an infomercial, but I got mine from QVC.

Kate

Hi Linesa,
I hope I've spelled your name correctly... if not, except my
apoligies.
My my past experiences trying all sorts of cleansers and
moisturizers, to no avail, I have found that using a mild... yet
gentle cleansing milk to cleanse your already very sensitive skin. It
doesn't cause any irriation, and washes off very easily without any
residue.
As far as moisturizers, a rejuvenating cream is nice and soothing to
apply to your face afterwards. Using a small amount on each cheek,
nose, chin, neck, forehead, etc. massage in thoroughly. Not only does
it moisturize your dry skin quiet well, but it also helps to
strengthen any and all new blood vessel growth.
Hope this helps!
Ann
unique_challenge40160@...

Prescribed October 10th (100mg in A.M.) Diagnosed Oct 10th.
october 11th- Took the first pill, Alert and Active, able to stay
awake and operate all day. Until 3PM, started yawning, Home from
work @ 5:00 PM, Take a nap until 5:20, In bed at 10:30 No problem
going to sleep. wake up @ 7:00AM
October 12th- Took Pill, Alert and Active No side effects thus far.
AWebster

Carleen
I use Prescriptives foundation. it has no mineral oils which can be irritating to rosacea...Macy's carries this line...they can give you a sample to try...it's a bit costly but worth it..they also have moisturizers with no alcohol in them but I found they didnt work well for my skin. hope this helps.
Lanisa

For the person who asked if Dermalogica takes off make-up - I have
not had any problems with it taking off make-up. I do not, however
wear lots of make-up all the time. Just enough foundation to cover
the redness and only when I have to work. It takes off mascara fine,
although water-proof mascara needs eye make-up remover or the
dermalogica with cotton balls. I tried many cleansers over
time..this is by far my favorite. I think you can get it only at
hair/beauty salons, but the ones I have been to always have a
dermalogica technician that is very knowledgeable. They will probably
also give you samples to try first.
For the person who mentioned that metrogel dried their skin out - I
had this problem and my Dr. switched me to MetroCREAM. They also
make a metrolotion if the cream is too heavy for daytime. This has
made a world of difference for me.
Also, when I first tried to get an appt with a dermatologist, the
wait list to see a Dermatologist everywhere in my city was 9 - 12
months. Your GP can prescribe the various products (metrogel,
tetracycline) while you wait to see a derm. I was lucky enough to
find out that my regular "Family Practice" doctor even goes to a
salon once a month to oversee the IPL's being done on his patients.
He set me up for a free trial spot IPL and I am still considering
having it done all over. The redness in the one spot lightened
nicely.

Neat story, Dorla... but you could never figure out why he did that, huh??
Betcha I know!! Think it could be that he believed he loved ya??<br
great day!<br

Hi Everyone, I just joined this morning and am so glad I did. I just
wanted to introduce myself to let you know a little bit about me.
My name is Ann and I have had rosacea for 6 years. Although,mine
began to be somewhat mild, it progressed very rapidly within a 6
month time frame. Within 6 months it went from being quiet mild to
VERY severe. For 3 long years, I became housebound, depressed, angry
at myself for allowing it to come to this point, (which by the way I
know now it wasn't my fault) and lost my best friend of 13 years due
to this disease.
I also have the ocular component of this disease, so my eyes have
obviously been affected tremendously as well.
Since this has all happened to me, I have learned a lot throughout
the years, have been educating myself by doing a lot of internet
research, have met a lot of new friends via the net from other
support groups, and have found a faboulous doctor who has been doing
wonders for me to help me regain my self esteem again.
Not only am I here to learn even more from ALL of you, but I want to
HELP ALL of you as well... sort of my way of giving a little
something back.
I have a lot to offer those of you out there who are fairly new to
this disease, may have lost any and all hopes of ever being able to
cope, don't think your life will ever be the same again?? PLEASE let
me offer my support as well as my HELP!!
I also have LOTS of tips, suggestions, advice, etc, for anyone who
might be interested.
In conclusion, I am SO glad I found this group and hope to get to
know each and everyone of you soon.
Ann
unique_challenge40160@...

That was the first med I was given. It didn't work for me. I felt almost
like I had taken a tranquilizer instead of an upper. it was strange. But then
consider the source.lol..for some..it works quite well.

Always a day to remember past valentines also. 44
years ago my husband gave me one of those heart shaped
box of candies with lace and red roses and a
beautiful necklace and earrings. I was had been going
steady with a boy for over a year and wearing his class
ring. Needless to say even thought I had never even
gave Les a second thought it caused much trouble and
the talk of the whole school. No matter how much I
tried to convince my boyfriend that I didn't know why
Les had done this he broke up with me. And more in
retaliation than attraction, I started going out with
Les...Four years later we were married and in a few days it
will be 40 years and three kids later that I am still
trying to figure out why he did it. lol..We had never so
much as had a conversation...But guess it turned out
the way it was supposed to be. That's my Valentine's
Day story...Dorla

Hello Group,
I am wondering if anyone is taking Adderall or has
taken it in the past? If so how do you feel about it ?

Donna,
I also have muscle aches and a general feeling
of fatigue and illness, but without the
feeling of having a temperature. I also
believe it is connected to N or C. I am still
trying to figure out my c and don't even know
what my triggers are (couldn't do that poll thing).
And like you, when I take my medicine, the aches
go away. I tend to have lots of aches in my back
and also feel draggy and heavy, like it is a huge
effort to move or do anything. The medicine, dexedrine
(I know you keep hearing about it, i really hope you
can try it) makes all this go away. I feel light and
energized. But only to the degree that people w/out
n feel. nothing outrageous. I hope this helps. I don't
know about the fever thing. I wonder would you
qualify for getting a medical card since you don't
have insurance. It would cover Dr. visits and meds.
Keep us updated, I am thinking about you.
stacy

I received IPL treatments. and take Herpanacine
tablets,and use the Cutanix for sensitive skin(just
started on this). I also use Locoid cream/ointment
from time to time but never more than 5 days in a
row.I do also use cloderm from time to time. I also
try to stay cool as possible. Esp. at work. Home is no
problem.
Bob

I dont like to talk about politics in this forum... BUT I WANT A
FREAKIN' CURE FOR THIS B---SH--!!!!!!
Just a reminder about Prescription drug price controls.
If Al Gore gets his way and forces drug companies to sell @ a reduced
cost to a new government prescription program, Companies like ORPHAN
MEDICAL (developer of XYREM) and others, will not have the impetus to
R&D new drugs for people with uncommon diseases like Narcolepsy.
Just know now that if we fall into the belief that the
Government really wants to help us, then we're all in Big Trouble.
-Andy

Hey, Feebs, post a mesg and let us know that things are going ok for you...or
let us know if they are not!<br

Let me add my wishes for a happy Valentine's Day to all those others you're
going to receive!!<br

Hello Everyone,
Sorry I forgot to post the submission of XYREM to the FDA for approval,
but I've been busy as Nancy will tell you. The approval should come within
the next six months; let's hope it's sooner than later.
For a pretty complete listing of websites relating to narcolepsy, read
the current issue (Summer/Fall) of the Network's newsletter. Thirty-one
sites are listed.
Sue Carella

Hi Donna,
Which herbal remedies are you taking? Remember, sometimes herbs can be
dangerous to people that have certain conditions. As an example, some people
that take SRIs should not take the natural herbal mood enhancers. IMHO, I
believe that even natural substances can do harm to people who believe that
natural is okay.
If there's a natural remedy to replace dexedrine, please please tell me what
it is. Please don't tell me tyrozine cause I already know about how it sort
of works.
Maybe it would not be a bad idea to get another evaluation to determine
what's wrong. Some of those symptoms you describe sound kind of scary to me.
BTW, I've read that pwn have lower body temps than pwon. My usual body temp
is in the 97.0-97.4 area. Many pwn have told me that they also have a lower
body temp. Oh well, guess we pwn are kind of like turtles wanting to
hibernate all the time, lol.
Good luck to you.
regards,
vicki

Andy, thanks for the great links for information on Narcolepsy. Marilyn

yes I myself use atarax a prescription drug.

Has anybody heard of using claritin for rosacea. An antihisitime? (sp??)

Amy S

OCT. 2 2000
ORPHAN MEDICAL ANNOUNCED THAT IT HAS SUBMITTED TO THE FOOD AND DURG
ADMINISTRATION A 'NEW DRUG APPLICATION' (NDA) FOR ZYREM ORAL SOLUTION.
SEE http://www.talkaboutsleep.com/news/narcolepsy_xyrem_NDA.htm
Also as far as the most informative websites on Narcolepsy, I highly
recommend the following
http:/www.sciam.com/2000/0100siegel.html
and the UNIVERSITY OF STANFORD SITE.
-Andy

Hello "N" Friends,
My name is Donna. I have Narcolepsy and mild/moderate cataplexy.
My cataplexy is not so bad that I collapse (although one time I did
many years ago) but I do very frequently experience weak rubbery
muscles and a generalized "floaty", foggy feeling.
I have no health insurance, therefore cannot afford to buy my
prescribed N med - Provigil. For the past year, I have been doing
very well taking herbal stimulants along with caffeine (a lot cheaper
than Provigil!). This combination has made me feel extremely well
and has eliminated my Narcolepsy/Cataplexy symptoms......up until
this past month.
I have had this generalized feeling of illness which is accompanied by
severe muscle weakness and mental dullness/fogginess. I feel as
though I have a fever but when I take my temperature it is below
normal (averages 98.0F). This feverish, ill feeling is at its peak in the
late afternoon/evening after I have been awake for about 8 hours. It
is also there in the morning and early afternoon, at which time I feel
exactly the way it feels when you have a high fever and take Tylenol
or ibuprofen and the fever begins to break. I feel like this deathly ill
person, like I have cancer or something (although I know I do not).
Can anyone else identify with what I have described here? I am
quite sure it is directly related to my Narcolepsy/Cataplexy
because I was like this all of the time before I was diagnosed --
after I started my meds (and herbal remedies) these symptoms
disappeared. So after I started my N meds, I realized that all of
those ill symptoms I had been feeling for so long must have been
related to the Narcolepsy.
But as I learn more about Cataplexy and that it is not just a
disorder that makes one collapse, but can also manifest itself as
a generalized, all-over muscle weakness , I have to wonder if
these ill feelings are due to the Cataplexy. My guess would be that
it is related to both N and C.
On another note, something that has just come to my mind is this:
If Cataplexy is a disorder which causes muscle fatigue, weakness,
and/or collapse, than what effect does Cataplexy have on the heart
and cardiovascular system - which is also made of muscle tissue?
A scary thought!
Thank you in advance for your ideas/comments.
God bless each and every one of you,
Donna

From what I read I am a "pure" snorer. Do any of you have this
problem? Has anyone had any luck with non surgical or surgical
procedures. I am now sleeping at the other end of the house from
everyone because my snoring is so loud. I would like to be able to
go on vacation with my husband without having an ajoining room
(lol/weep all at once)
Sue

Has anyone found a brand of make up that works better than others?
Ive tried several of the drug store brands (Revlon, Max Factor, L'Oreal)
but they all end up making my skin look worse than when I started!
Carleen

My advice is to stop using make up althogether.... sorry.

OOOPpppps . Someone just informed me that this
only pertained to the inquiries about the new merger..
lol....But some things are going to change for the
clubs..Like the pictures and pretty colors.. Dorla

The following narcolepsy poll is now closed. Here are the
final results:
POLL QUESTION: What are your cataplexy triggers?
CHOICES AND RESULTS
- Laughter/Excitment, 6 votes, 33.33%
- Fear, 3 votes, 16.67%
- Anger, 4 votes, 22.22%
- Surprise, 3 votes, 16.67%
- No Trigger, 2 votes, 11.11%
For more information about this group, please visit
http://www.egroups.com/group/narcolepsy
For help with eGroups, please visit
http://www.egroups.com/help

I read the poll check list for C triggers. I believe an important trigger
left out is anticipation. Of course, then there's Sue's funny trigger.
I hope you don't get mad Sue, cause it's really a funny trigger. Don't ask
Sue to say anything that could be too profound. lol.
regards,
vicki

Helen Saraceni:
Sorry for the delay in this response, but you might find this interesting what
the
IRF says about poison oak:
"According to the American Academy of Dermatology, Poison Ivy Rash is caused by
a
substance called urushiol, found in the sap of Poison Ivy, Poison Oak and Poison
Sumac.
In those who are sensitive, urushiol causes a reaction in the form of a line or
streak of
rash (sometimes resembling insect bites) within 12-48 hours. Redness and
swelling will be
followed by blisters and severe itching. In a few days, the blisters become
crusted and
begin to scale. The rash will usually take about ten days to heal, sometimes
leaving small
spots. The rash can affect almost any part of the body, especially areas where
the skin is
thin." source
I work on a farm and when I am exposed to poison ivy I react horribly. It is
absolutely the worst break out all over my body. Must be rosaceans are very
senstive to poison oak or ivy?
As to rosacea treatments, go to the sister-site
http://www.rosaceans.com
Hope this helps.
Brady

Hi Sue,
That sounds pretty much like me at that age. I would however
caution against 'drastic' measures like "pretty much yelling at her
& shaking her" as those can actually drain her energy and induce
cataplexy ...My mother used to do the same as it scared the crap out
of her.
I suggest you really try to get her a tutor, independant study
resources so that she can learn when she is awake. I slept through
3/4 classes a day in highschool...and films were deadly. I was a
gifted student so I was allowed to do any of my classes in. study.
Really you need to make sure she knows the basics, that she picks up
good study habits more than she does 'all the work' also get her
teachers to not let her sit still for more than 20 minutes, they can
have her take papers to the office, etc if she looks sleepy.
We have ruled out
seizures & heart problems.
=sounds like me went through the same routine.
She has recently started taking low doses
of zoloft & adderal which resulted a real reduction in episodes (from
20 to 150 a day to about 15-20 a week). Our next step is a sleep
study & to see if she can be diagnosed with narcolepsy or if this
just continues in a long line of weird symptoms that don't neatly fit
any diagnosis.
=there are other related diseases like hypersom. I might also
suggest as puberty is a killer to narcolepsy that you might want to
look into getting her some hormonal help, I found depoprovera shots
to take away the hormonal swings that were death to my narc.
We just had a consult with a pediatric sleep specialist. He wasn't
convinced that it sounds like narcolepsy, but did recommend a sleep
study.
=Narc. is still a rare disorder with lifelong meds, so most docs are
really reluctant. Its sad that they think teenage narcs are really
just depressed, lazy, epileptic, suffering from repressed
emmotions...
When I asked him how many cases of narcolepsy he has seen, he
said half a dozen.
=That might be your answer there. If in all his years of study he's
only seen 6...thats not a great pool and if they've all been
articulate adults who've been dealing with it for 10+ years its
pretty easy to diagnose. And a sleep study won't rule it out or in
in all cases. Look for a neurologist who has a few diag. under
their belt. I found mine who is the head of neuro. at our metro
hospital and is the dean of medicine at one of our countries most
respected med schools...after the ten years of 3 cardiologists, 4
neuros, endocrinologists, internal specialists, naturopaths,
psychiatrists...you name it. I finally got fed up found one I