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I heard that it was approved by the FDA last year for the treatment
of acne. I wondered if there were any studies of its effects on acne
rosacea. Antibiotics work great for the redness in my face, but I
think my recent struggles with acne deal with antibiotic-resistant
bacteria.
I have a laser surgeon (who's extremely expensive). I will ask her
about it when I see her at the end of the summer. I just wondered if
any of the rosaceans had heard anything about it....or tried it?

Stacy, I was taking provigal but it had awful side effects. It also stopped
helping after I took it for a couple of weeks. My Dr. may try something
new. I am taking zolfot at night to see if that helps with my sleep any.
Thanks,
Debbie

She was trying to tell me what I could do to get rid of the acne on
my chin. It was so aggravating. I spend a lot of time and energy
trying to keep my skin clear...I look okay. I would say that I have
mild acne because I work at it so hard.
And this person is about 10 yrs younger than me. She went into great
detail about how her 24 yr old roommate treats her acne and she
suggested that I try those things too. UGH!!!!!!!!!!!!! Too
aggravating!

Clynch, why would an employer let you nap for chronic mono and not for N.?

Leslie,
Thanks for the post. I can so relate to your story.
The snack in the car thing is great advise. I have
been putting a snack in my daughters backpack and
she eats it on the bus going from school to after
school care. this helps. then a snack in the car,
but sometimes we just had to get a small dinner
(taco, chicken sandwich) on the way home from school
which tided her over to dinner. If i sit down when
i get home forget it. I remember many of those
half sleeps where my daughter is playing with me
and i am practically asleep but still can respond
enough to please her. Like i said, we have to be
creative. I may try the meal planning thing you
talked about. I usually go to the grocery sunday.
and get plenty of quick things to make, then
will have a couple of nights where i cook a big
meal that works great as left overs.
Best wishes to you
stacy

This sounds like me a few years ago (before my diagnosis & before I married
and quit my job). I was a single mom of two special needs kids. What ended up
working for me is that I finally realized I had to plan dinner for the week
-- I *hated* doing that. But every Saturday I would decide what we would eat
each day, and buy the food either Saturday or Sunday. Often it would be
things like frozen fish and canned sweet potatoes -- stuff pretty easy to
cook but cheaper than eating out and usually healthier than pure frozen
dinners. I would be completely exhausted when I got home, but the first thing
I would do is turn on the oven and put the food in (I couldn't even wait for
it to preheat) and SET THE TIMER. Then I would lie down on the floor and
"sleep". My daughter, who was 3-4 at the time, would spend the time waiting
for dinner playing with my mostly-asleep body -- positioning my legs and
arms, telling me how to hold my hand (it is *so* hard to hold your hand
straight and sleep at the same time). There were many times I woke myself up
when she would ask me a question and I would respond with nonsense. I
remember clearly responding to a question with "because bicycles don't fly".
But by the time the timer went off, I had got enough "rest" to make it
through another hour or two. My son was older (by 2 years) and I really don't
remember what he did -- probably watch TV. Oh yes, one other important thing
was that I always had a small snack for them on the way home from daycare --
a "cereal bar" or a can of ensure, sometimes raisons worked -- to help them
wait until dinner was actually ready. [Also, I almost always ignored the
directions to "turn fish over 1/2 way through heating time"].
-- Leslie G.

Hi Violla,
Thanks for posting about your Dr visit. It seems like he should be
able to distinguish between lupus and rosacea. A lupus rash looks
like a bufferfly is sitting on your face and acne isn't usually
present. The lupus rash is very symmetrical.
With rosacea, the redness can be on the cheeks, chin, nose, and
forhead.
I certainly hope you don't have lupus. I hope the doxycycline helps
you too.
Tricia

Hi all,

Today I went for another derm who owns a laser clinic (was well recomended for hair removal, by the way).

He was nice also american.

He did look at me like he was not sure if I have rosacea. He asked if I tried to apply rozex, he thinks this can help.

I told him that I learned a lot from the internet and that no cream will get rid of spider veins or the underneath redness.

He agreed, he wants me to first get some blood tests just to b sure I do not have Lupus or any other similar conditions.

I asked for doxcycline , he said he doesnt believe it can help..again I explained why antibiotics may help rosaceans..so he agreed to try and gave me doxcycline 2X 50mg , Thank U.

About laser treatments he said he can treat me, I asked if he treats rosaceans and he sais he does..I asked what lasers he said he has IPL but he said he does not want to go into details now (nothing said about the cost either) and that we shall discuss it when I get my next appointment.

Mayb he is going to do some homework now??

Any way this is the first doctor that understands my frustration and is willing to treat me, he even said when I was on my way out: "dont worry, Ill help u..it will b ok" I told him that only to hear that..he made my day.

Well group..as u can see I am still a bit in the dark because I cant have any feedback from anyone about his rosacea treatments..and I feel he is not so sure about it himself. But I must start from him and if he wont help...Ill go to the other side of the sea :-)

Ahh..he said his treatment must b foloowed with rozez cream..any one tried this?? (I guess its some kind of metronidzole).

Thanks for reading,

wish u all the best,

Violla

Hi Debbie,
I just wanted to respond to your post. I am
also a single working mother. I only have one child
at home however, so I can empathise with you and
relate to the drive through dinner thing. My doc
has me on dexedrine 5mg 4 times a day, however, if
i take it all day, by the end of the work day, which
is when i need the energy to be a single mom, i am
exhausted. so what i do instead is try and get through
the day without meds. then take one or more in the
late afternoon and through early evening which gives
me plenty of energy for my daughter. We can't just go
home and collapse or even go home and take a nap since
we have children. Naps are great but single moms rarely
get them. I don't know if you have tried other meds but
just wanted to pass along this info. Good luck,
Stacy

Hi Lauren. I work full time and find it very hard to stay awake during the
day. It's hardest when I get home after work, I am a single Mom with two
young children. As soon as I pick them up they want dinner. Sometimes I am
just so tired that I go through the drive thru at Burger King.
My Dr. has put me on provigal, at first it work great but now is not working
hardly at all.
I am also new to the group, I find that just talking to people with the same
problems has helped me already and I hope it helps you too.
Debbie

Ann,
You are the first to bring this to my attention.
Obviously there may be something to the
comments by these doctors about Epilight, but

Thank you Leslie. I will try and do that. I always say that I wish I had
Alice (from the Brady Bunch) helping me out, it would be so much easier.
This weekend I bought a used portable dishwasher, so far it's helped me out
alot!
Debbie

Hi,

I found this site, it has very interesting stuff to add on the subject.

http://www.angelfire.com/journal2/sadhelp/kp.htm

any comments?

Any one who has Keratosis Pilaris on the face along with rosacea..can u say something about your treatments??

Debby,
Welcome to the group. I'm no expert, but what you are describing sounds
almost like Chronic Fatigue rather than Narcolepsy, though it might be both.
I've never heard of Narcolepsy coming on so fast. Maybe some of the others
will know more. I've been tired all my life, since I was a kid, so I don't
remember the onset of symptoms.
Clynch
I am new to the list and new to Narcolepsy.
It started suddenly the second week of this past Dec. First I took it as
extra tired and tryed to get extra sleep but then a couple of blackouts
occurred the first kind of funny and strange.
I was watching tv last i knew, kept dozing off waking up and finally I guess
I blacked out because when i woke up I was on the toilet and had no idea how
I got there.
Next episode was not so funny and very dangerous. I had gotten up in the
middle of the night to go to the toilet, not uncommon for me but I blacked
out and woke up to my head and face crashing into the ceramic floor. I was
home alone which was even scarey since i could barely balance to walk back
to bed. My forehead and eye swelled up instantly and I was very dizzy and
light headed the rest of the night. This happen the Friday before Christmas
and I had a blackeye well into jan. Thats when i knew something was wrong
and went to the doctor.
I have to wait till the 25th of this monnth to be tested but the symptoms
have gotten progressively worse, is that how most of you went getting worse
with time?
I can no longer sit and relax in front of the tv for a movie with my husband
without falling asleep no matter the time 7pm or 12 midnite. This bugs me
the most.
It has made work impossible I doze out at the computer on the job, morning
and afternoon.
I feel tired most all the time and sometimes disoriented like I cant put my
thoughts together.
Just today i went to the neighborhood store and when i came back I couldnt
find my house. I have lived here 7 years I was on the right street but kept
missing the house three times I passed it. Finally I opened the window sat
up and followed the numbers to my house number and got home. I have even
experienced slurred speech we thought we had a gas or carbonoxide leak at
first and had it checked but no leak just me sick and getting sicker. I
talk very active in my sleep and arm and leg movements. I will sleep for an
hour or two is average and am up for 10min or so and can go back down this
happens all night. Sometimes in the middle of the night on one of my wakeups
I feel the most refreshed and awake of all by morning I awake tired and
dragging all day.
If I lay my head down forget it I am out maybe for 15min or a hour or two
then up for awhile and in a short ready to go back down. If I stay busy I
can stay awake but am dragging like I havent slept. Anyone relate with any
of this?
It has really handicapped my life terrible and am having a real hard time
dealing with it.
Debby

Lanisa,
I had my first photofacial (i.e., photoderm) treatment
last week and I was told that I might experience
swelling afterwards, but would last only a few days at
the most. I didn't swell immediately, but my cheek
did swell the next day. I can't say that was from the
treatment though, since I've had this before.
Barbara

Brady,
I saw this link on a post at rosacea support.
http://www.doctorsforsale.com/epilightbuyerreports.htm
It seems some dissatisfied derms are trying to organize a class
action suit against the companies who market the Photoderm and
Epilight lasers. What do you know about all this?
Ann

I'm thinking about getting this type of treatment for my moderate rosacea.I mostly get the flushing during emotional upset or heat and cold weather and lately I've been getting the pastules type acne and blochy looking skin. my derm has prescribed Noritate which I'm currently using. what side effects should I expect with photoderm laser??
Lanisa

I am new to the list and new to Narcolepsy.
It started suddenly the second week of this past Dec. First I took it as
extra tired and tryed to get extra sleep but then a couple of blackouts
occurred the first kind of funny and strange.
I was watching tv last i knew, kept dozing off waking up and finally I guess
I blacked out because when i woke up I was on the toilet and had no idea how
I got there.
Next episode was not so funny and very dangerous. I had gotten up in the
middle of the night to go to the toilet, not uncommon for me but I blacked
out and woke up to my head and face crashing into the ceramic floor. I was
home alone which was even scarey since i could barely balance to walk back to
bed. My forehead and eye swelled up instantly and I was very dizzy and light
headed the rest of the night. This happen the Friday before Christmas and I
had a blackeye well into jan. Thats when i knew something was wrong and went
to the doctor.
I have to wait till the 25th of this monnth to be tested but the symptoms
have gotten progressively worse, is that how most of you went getting worse
with time?
I can no longer sit and relax in front of the tv for a movie with my husband
without falling asleep no matter the time 7pm or 12 midnite. This bugs me
the most.
It has made work impossible I doze out at the computer on the job, morning
and afternoon.
I feel tired most all the time and sometimes disoriented like I cant put my
thoughts together.
Just today i went to the neighborhood store and when i came back I couldnt
find my house. I have lived here 7 years I was on the right street but kept
missing the house three times I passed it. Finally I opened the window sat
up and followed the numbers to my house number and got home. I have even
experienced slurred speech we thought we had a gas or carbonoxide leak at
first and had it checked but no leak just me sick and getting sicker.
I talk very active in my sleep and arm and leg movements. I will sleep for
an hour or two is average and am up for 10min or so and can go back down this
happens all night. Sometimes in the middle of the night on one of my wakeups
I feel the most refreshed and awake of all by morning I awake tired and
dragging all day.
If I lay my head down forget it I am out maybe for 15min or a hour or two
then up for awhile and in a short ready to go back down. If I stay busy I
can stay awake but am dragging like I havent slept.
Anyone relate with any of this?
It has really handicapped my life terrible and am having a real hard time
dealing with it.
Debby

Hi everyone,
I just wanted to say a BIG thanks to all of those who have already
sent in their stories. Obviously with the war in the middle east
going on previously, the subject of rosacea would never be recongized
to the media,at lesat for the time being. However, I am holding on to
all the letters I have recieved and giving it some time in hopes I
will recieve many more as times go by. There is no hurry, take your
time, but if you haven't sent in your story, please take some time to
do so whenever its possibly convient to you.
To date, I have collected 91 stories and hoping over time the numbers
will increase.
Remember there is no hurry to get your stories sent in, but am still
asking for those who have not already done so, please take part in a
very important mission that I think once is approached... will be
very beneficial to ALL of us.
Wouldn't it be a GREAT feeling to know that you played a BIG part in
helping with new reasearch for future treatments?
Previously there are an enormous stack of letters sitting on my desk
at this point, hopefully there will be many more before I actually
approach the media.
I will keep everyone updated from time to time.
Ann
You can send your stories to my personal email address at
unique_challenge40160@y... Make sure you include a waiver
along with your story too.

This sounds like me a few years ago (before my diagnosis & before I married
and quit my job). I was a single mom of two special needs kids. What ended up
working for me is that I finally realized I had to plan dinner for the week
-- I *hated* doing that. But every Saturday I would decide what we would eat
each day, and buy the food either Saturday or Sunday. Often it would be
things like frozen fish and canned sweet potatoes -- stuff pretty easy to
cook but cheaper than eating out and usually healthier than pure frozen
dinners. I would be completely exhausted when I got home, but the first thing
I would do is turn on the oven and put the food in (I couldn't even wait for
it to preheat) and SET THE TIMER. Then I would lie down on the floor and
"sleep". My daughter, who was 3-4 at the time, would spend the time waiting
for dinner playing with my mostly-asleep body -- positioning my legs and
arms, telling me how to hold my hand (it is *so* hard to hold your hand
straight and sleep at the same time). There were many times I woke myself up
when she would ask me a question and I would respond with nonsense. I
remember clearly responding to a question with "because bicycles don't fly".
But by the time the timer went off, I had got enough "rest" to make it
through another hour or two. My son was older (by 2 years) and I really don't
remember what he did -- probably watch TV. Oh yes, one other important thing
was that I always had a small snack for them on the way home from daycare --
a "cereal bar" or a can of ensure, sometimes raisons worked -- to help them
wait until dinner was actually ready. [Also, I almost always ignored the
directions to "turn fish over 1/2 way through heating time"].
-- Leslie G.

Welcome to all the new members; nice to see you
here, Brigitte. Karen's right about quiet; this club is
in winter hibernation. Maybe we should wake everyone
up and start some shtuff! LOL How 'bout I pinch
Karen and Brigitte and see how they react? <br
everyone's weekend is one of relaxation. Talk to you all
soon.<br

Well, I'd soon slap your hand away Ray, and say
ouch! Karen might enjoy it though...hehehe <br
can say what I want this weekend, since she's not
around to defend herself!)<br
posted on how she's getting on, in her travels? I worry
about her whenever she's travelling, and I know you'll
have contact with her. Thanks!<br

Hi sis, thanks for inviting me here. I'm sure
I'll like it here, any club you recommend is sure to
be a good one. (Great paintings by the
way!)<br
although I do have a disability of the nervous system
called 'idiopathic chorea' which is just medical-speak
for 'irregular involuntary movements of no known
cause'.<br
problems....I was married to one, and dated a couple of guys
with Spina Bifida or something
associated.<br
profile, or ask me here.<br

Hi Violla-
So sorry to hear of the insenstivity of a fellow medical
professional. It seems to me that that doc has never personally
dealt with something like roseacea. He probable slept thru the
lecture on bedside manner during medical school. I keep thinking
that this is why God made nurses- so we can tell the patients what
the doctor just told them. Please don't give up- there is SOMEONE out
there who has answers for you. Chin up!
Kate

Hi Lauren. I work full time and find it very hard to stay awake during the day. It's hardest when I get home after work, I am a single Mom with two young children. As soon as I pick them up they want dinner. Sometimes I am just so tired that I go through the drive thru at Burger King.

My Dr. has put me on provigal, at first it work great but now is not working hardly at all.

I am also new to the group, I find that just talking to people with the same problems has helped me already and I hope it helps you too.

Debbie

Hello Brig, welcome to the club sis! Hope you
like it here and get a chance to meet our founders
Angella and Ray!!! (we are't actually sisters but were
darn close, we adopted each other)<br
place here introduce yourself and tell people a little
about your self!<br

Hello, my name is Lauren and I have just joined this group. I'm 17 and was diagnosed with narcolepsy a year ago. I am very thankful that I have been diagnosed early in my life, and doctors believe that it may have resulted from having glandular fever in 1998. Has anyone else had this kind of diagnosis? I took the required sleep tests and was placed on medication, which I have suffered numerous side effects from, and as a result, both the narcolepsy and the medicaion have had much interferrence with schooling. Due to the narcolepsy, I am also doing my final year of school, part-time, over two years, and I was wondering if other people find it difficult to study or work full-time, due to the illness, also?

clynch-
Just got your email. You are in my prayers, and
good luck. Just to let you know. I don't fall
asleep at inappropriate times either. and i didn't
think i had cataplexy when first i was referred
to the sleep doc. come to find out i've been having
c all along just did not know it. Mine is fairly mild
and can go completely unnoticed to the untrained eye!
Anyway, I did get the n diagnosis, my eds is very bad
also. It even took me awhile to accept i really have
n. i feel better just knowing it now. I hope you will
get the same relief. let us know okay?
stacy

Well, I went to my primary doctor to get the referral to the sleep doctor.
When I was in Idaho the sleep doctor up there told me that he was certain
that I have N. This primary care physician looked down his glasses at me
when I told him that I don't have cataplexy and I rarely fall asleep at
inappropriate times. But I have the H. Hallucinations, the EDS (really bad),
the night paralysis, and pretty much all the other symptoms.
He did a blood test for the N gene, which wasn't done before. Then referred
me to the sleep doctor. He put on the form that he was referring me to "Rule
Out Narcolepsy". That bothers me. I don't want to rule it out. I want to get
a positive diagnosis. I hope this referral doesn't keep this sleep doctor
from giving me an honest go. Anyway, I'm going in on the 18th, so say a
prayer for me, guys!
Clynch

Jojoba oil has flared up my face more than once so
I've stopped using it completely. For a moisturizer I
use Oil of Olay for Sensitive Skin - this is about the
only thing I can use since my face is so super
sensitive. I too have tried alot of the
recommendations, but have had very poor results (and
flare-ups). My right side of my face gets swollen -
especially with humid, damp weather and dry air.
Hope you find something that helps you.
Barbara

Hello Slider28au, Oregonlouie, and Akoruno!!!!
And welcome to this club! Feel free to tell us about
yourself on the message board!!<br
just met Helen, so I'll tell you a little bit about
myself Slider....I'm not visibly handicapped, even
though I feel like it sometimes, I'm quickly pushing 44,
ouch...LOL...been widowed 2 times, but there isn't anything to be
sorry about because I have heeled from it, I can talk
about it without hurting now...I have a 19 year old son
who is out in the world getting himself into all
kinds of mischef...he is very tallented as a
writer...but went from Rapp to goth...and I do alot of
worrying about him...he met a lady who is a few years
older than him...and engaged a little to quickly
possibly, but she seems real nice.<br
started my own business, but still learning the
ropes...and still working other jobs until my own can support
me. I've changed alot in the last almost 3 years
since my husband died, and I know he would like it,
because I'm finally happy again.<br
me to your friends list, I love talking to
people.<br

Clynch, how can you be certain you don't have cataplexy? I didn't realize
I had it until I got the EDS handled and then saw that what I was taking for
part of the N. symptoms was clearly cataplexic. The stimulus/response cycle
was recognizable. It's not severe enough to send me to the floor, but is
there as things like having trouble forming words--"cold tongue"--dropping
things, and becoming wobbly-legged. I was both surprised and relieved to
find it there since for the time being, it's enough of a confirmation of the
N. diagnosis to save me the expense of going through the sleep study to get
the proper medical care. My doctor even suggested that the cycles of fatigue
that I still suffer from could well be a C. response to the stress of my job,
since I'm subject to constant interruption and "annoying" requests from my
customers during non-service work cycles...the time of day I seem to have the
most problem with it. Just a thought. I read recently that C. is often not
severe enough to be recognized as a condition even when it is present.

Thanks, Karen, I'm glad you did that; I think you're talented and it's good that
others get to see your work.<br

Violla,
I've been told that you have to wait at least 6 months
after taking Accutane before starting photoderm
treatments. Hope you have success.
Barbara

Hello everyone I posted a few of my paintings in the photo section of the
club....I had some time off for the hollidays and got some new ones
done.<br

HEY, SOMETIMES DOCTOR'S TERMINOLOGY IS THE PITS. I ONCE HAD A MISCARRIAGE,
AND IT WAS "MEDICALLY" CALLED A SPONTANEOUS ABORTION. MY MOTHER FREAKED WHEN
SHE HEARD THIS. IT CAN BE DIFFICULT TO BE AT THE MERCY OF SOME OF THESE "ALL
KNOWING" DOCTORS. GOOD LUCK, CINDY

Poll Questions are being taken in the rosaceans group
on the questions:
How do you treat your rosacea?
What non-prescription treatments do you use to
control your rosacea?
What Prescription Medications do you use to treat
your rosacea? (three polls)
To vote on these poll questions go to this url and
cast your vote or see the results:

In case I don't get in here before Tuesday, I want to wish everyone a safe,
happy New Year celebration. Be well, everyone.<br

Hi all,
This is so funny, I just sent a message about my bad day with the laser
derm, and I was thinking I will never find here in Israel some specialist to
help me.
I was really considering going to UK for help.
I started reading about Dr Pattersson , on his site and it seemed very good,
then I checked his background medical experience and I came up with this:
Dr Mervyn Patterson:
Trained under Dr Joshua Fisik, ESC Jerusalem, Israel in the Photoderm pulsed
light treatment of leg veins, facial veins, pigmentation, birthmarks and
tattoos. 1997
So what do u know?, such a small world..so now im going to check up on this
in Israel, I think ESC is the company developing this photoderm (today they
have a diffrent name Lumenis), yes I heard of them developing lasers but I
didnt make the connection with laser for rosacea.
Mayb sometimes a solution is just under your hands but u cant find it.
There is a saying in hebrew , mayb also in other languages:
The shoe maker is going with out shoes. Mayb we have the technology to
develop these machines now I need to find the doctors who uses them.
Thank u Kajsa for the info.
All the best
Violla

Welcome to the club rrahmany!! I hope you have a very Happy
Christmas!<br

Hi Marilyn my friend,
As far as some of the abbreviations I've used such as TX, TX
actually means treatments. The YAG is actually an older laser that
was used on me approximately 2 years ago that actually attacks the
feeder vessels that will often feed off the small ones and can
sometimes make your rosacea worsen if all these feeder vessels are
not attacked constantly.
Some two years later, now they have come out with a whole new series
of lasers that can help rosacea suffers much quicker. I was actually
talking to my doctor the other day, and as it seems, he will be one
of only two doctor's in the country who will be getting a laser that
can consist of having a tx weekly and only needing 5 txs in order to
get your condition under control completely... over the long hall.
It's not certain as of when he will be getting this new laser, but
from my understanding it will be very soon... the only thing is you
would have to have 5 VERY aggressive txs in order to make that happen
sooner rather then later.
Sorry for all the mumbo jumbo in my previous emails, however, if
there is ever anything you have difficulty understanding, please let
me know. I'll be more then happy to explain things as best as
possible.
Ann

Hey.
Thanks for the advice. Once I get to the sleep doctor, he will be "in
charge". I'll get my meds and check-ups from my PCP, but the sleep doc will
be controlling the treatment plan. My PCP is a good one. If the sleep doc
says it's N, the PCP will do what he can to assist without resisting, his
initial doubts aside. He's good that way. He was my PCP for about 5 years
prior to my move to Idaho and I'm happy that he's my PCP again.
BTW, Thyroid and chronic mono were ruled out a while ago. I was on Synthroid
as a teen, but not because of a blood test. Instead it was because the
symptoms were consistent with hypothyroid. I've read that lots of PWN get
misdiagnosed as hypothyroid.
CV
For Clynch Varnadore Re: Doctors wrote:
Then referred me to the sleep doctor. He put on the form that he was
referring me to "Rule Out Narcolepsy". I hope this referral doesn't keep
this sleep doctor from giving me an honest go.
I don't think you have anything to worry about. I believe the sleep doctor
will perform test's to 'rule out narcolepsy' like your primary care
physician
asks, to rule out other sleep disorders and diseases (thyroid etc.). But the
sleep doctor knows better then your PCP regarding sleeping disorders and
if he 'rules out' everything else then his diagnosis of Narcolepsy is
correct.
If your medical insurance allows you to continue to see the sleep doctor
for treatment without a referral, I would do so. You will get better
treatment then with a PCP.
Take Care,
S. Sanders

Hi all,

This is especially for the ones familiar with the UK laser specialist, I wonder if any one here from UK took accutane in the past and had rosacea in result. Treated (at least a year after) after with laser/ photoderm..any recomandations?

Im just not sure if any laser treatment for rosacea can suit people after accutane with very dry and thin skin. So if any of u have experience with this??

or do u know of a UK-rosacea support board I can ask this?

Thanks,

Violla

Hello everyone,
I'm fairly new to the group also. I was first diagnosed with Narcolepsy in
1992. It's gotten worse over the years and I have tried every medication
out there. Most of them didn't do a thing or I didn't like the side effects,
or it worked for only a week or so, or I ended up being allergic to it, or
built up a tolerance to it.
In regards to Debbie B.: new to the group:
How long have you been using the CPAP machine? If not long, give it some
time. I have a friend who has sleep apnea and uses the CPAP machine. It
took him awhile to get use to it. Also, if you continue to feel like it's not
helping check the mask; it might not fit you properly.
I tried Provigil awhile back and had the same problem. Worked great the
first week or two, then I actually started feeling tried all the time and even
had bags under my eyes. Besides they use Lactose as a binding agent. I'm
Lactose Intolerant, I was wondering why I always had a bad stomach ache:-)
As for feeling depressed, I think everyone one of us has felt depressed and
very frustrated at one time or another. Your not alone.
For Clynch Varnadore Re: Doctors wrote:
Then referred me to the sleep doctor. He put on the form that he was
referring me to "Rule Out Narcolepsy". I hope this referral doesn't keep
this sleep doctor from giving me an honest go.
I don't think you have anything to worry about. I believe the sleep doctor
will perform test's to 'rule out narcolepsy' like your primary care physician
asks, to rule out other sleep disorders and diseases (thyroid etc.). But the
sleep doctor knows better then your PCP regarding sleeping disorders and
if he 'rules out' everything else then his diagnosis of Narcolepsy is correct.
If your medical insurance allows you to continue to see the sleep doctor
for treatment without a referral, I would do so. You will get better
treatment then with a PCP.
One more.....
To Donna Keller Re: Xyrem:
I'm still a skeptical. For more information on Xyrem click here:
http://www.lycaeum.org/drugs.old/synthetics/ghb/
Take Care,
S. Sanders

neat, neat Christmas card:<br
target=new

TO ALL MY MEMBERS HAVE A HAPPY, HEALTHY AND SAFE
HOLIDAY !!!! ENJOY THIS HOLIDAY TIME WITH FAMILY AND
FRIENDS! PRAY FOR THE JOY YOU ARE FEELING THIS WONDERFUL
SEASON..AND FOR THOSE WHO ARE NOT WITH US AT THIS TIME.
<br
ANGELA,JIM AND RAY !!

Nice to meet you and welcome. I can relate to the raising kids alone, so if you
need some support sometime, just holler.<br

Hello Violla!

IM so sorry about ypur experience today!.

To be told by a PROFESSIONAL that there is NOTHING that you can do for

your condition is very disheartening not to mention cruel!.

I hope you find someone that is willing to help you very soon!

Marilyn

Hi All,

I had a terrible experience today and I must share it with u, mayb some of u also had this wrong diagnosise.

I went today for the first time to a derm here in Israel that specializes with lasers, I was sure he doesnt know much about rosacea just like all the other derms but he was my last hope at least to try a laser or photoderm .

I just started explaining my problem , I hardly finished 2 sentances and he tells me, u have saborea dermatitis and I wont treat u with laser. I said what?????

I told him I have seen 15 derms and the most agree that I have rosacea, they actualy recomended u for treating the spider veins. He insisted I have seboreah dermatitis, he sais that because my face is red and I dont have pastules it can not b rosacea. I asked why does he think its seboreah dermatitis?? he sais because I have the little white bumps.

Can u believe this????

I asked him what to do and he sais its a chronic disease with no cure, I can give u steroids that I dislike the idea or low dose accutane (just to remind u all I had a high dose accutane given for so called acne that gave me the worst rosacea as I see it). He said only to use a moisturizer for sensitive skin. I told him I want to try doxcycline but he refused to give me.

WOW. THis doctor definetly did not want anything to do with me, he said laser treatments wont help me !!!

I really wanted to cry, Im sure he just has no experience with treating rosacea, he likes to do hair removal and other obvious things.

But I waited a month for this appointment because he was out of the country, and he throws at me seborehic dermatitis?!.

I read a bit about it, but Im sure I have rosacea and not that, I flush up to my ears, my chest, I cant sleep with my face on a pillow, I need to avoid so many things, but even if my skin is dry I dont have any flakes at all, so can this b seborehic dermatitis?????

He hardly looked at my face ,only from the other side of his desk, in less than 5 min I was out of his room.

This was so disapointing, even if he agreed I have rosacea I would probably b lucky that he wont treat me because he seems so unsure with what to do.

If any of u can add some more information on sebboreic dermatitis or if u also had this diagnosed instead of rosacea by mistake, please tell me about it.

On my way out he added: forget about medicine, try meditation..there is nothing that can help u.

JUst to hear him say that, I wanted to say that I will fight this till the day I die, I just cant let those stupid doctors destroy my life more than already done.

In a country of only 5 milion people I probably wont find big help with rosacea, Im starting to consider other places..So the closest I can think of to try is UK. IF any one here from UK had success with laser treatments for rosacea please recomend me some doctors..clinics..lasers etc.

Thank u all for reading, and all the wonderfull people on this board who always help me with interesting information.

If it wasnt for u all..Im not sure if I was still living..u are all guiding me to the right treatments im sure, thats why I cant give up.

Best regards,

Violla

Hi Chop...just wanted to say Welcome to the

Well, I went to my primary doctor to get the referral to the sleep doctor.
When I was in Idaho the sleep doctor up there told me that he was certain
that I have N. This primary care physician looked down his glasses at me
when I told him that I don't have cataplexy and I rarely fall asleep at
inappropriate times. But I have the H. Hallucinations, the EDS (really bad),
the night paralysis, and pretty much all the other symptoms.
He did a blood test for the N gene, which wasn't done before. Then referred
me to the sleep doctor. He put on the form that he was referring me to "Rule
Out Narcolepsy". That bothers me. I don't want to rule it out. I want to get
a positive diagnosis. I hope this referral doesn't keep this sleep doctor
from giving me an honest go. Anyway, I'm going in on the 18th, so say a
prayer for me, guys!
Clynch

Hi everyone" I am new to this site and diagnosis. I don't know the
first thing about rosacea or how it became part of me? I'm 37, female
and understand that it effects 1 in every 20 persons. I have never
belonged to a forum before and so glad I found this place, I have
read some stories and feel not so alone. If anyone can offer any
suggestions or info I'm all ears. Thanx

Hi Stacy,,it was good to hear from you again. Take care and keep us all
posted. Marilyn

Violla...good idea. I'm also thinking about getting laser done and trying to find out which one would be best for me and my stage of Rosacea.
Lanisa

Hello Everyone and Happy New Year,
I have been out of commission since being off
work (don't have computer at home). Hope everyone
had a peaceful and restful holiday. I enjoyed sleeping
in and not working:)!
Stacy

I can only say that Clinique products made my skin flare up even before I got
Rosacea. I never really had a zit until I used Clinique. How old are you? I
am 47 and I just started using Revlon's Age Defying foundation. It goes on very
smooth and it is very soothing. It has a sunscreen SPF 20, aloe, grape extract,
vitamins and a lot of other good stuff. My skin actually feels better with it on
than off. I have moderately dry to medium skin. I don't think I would
recommend it if your skin is very oily. An added plus, is the fine line
wrinkles are diminishing!
I had my latest breakout from changing hairspray, believe it or not. I
went from a pump to aerosol and sprayed it on my face in haste. It must have
clogged up the pores and voila a huge swollen broken out half of face.
My heart goes out to you. It sounds to me that you better not put anything
on your face until the swelling and breakouts go down. Are you taking any
medication? Good luck with it and keep us posted!
susan K.

Hi All,

This site has a list of laser types, since some of u had laser treatments but not always mention the exact laser name, can u please share your experience and see if your laser is on the list and add a few words about your treatments, how many treatments, good or bad results and anything more. Im going in this direction and this would help me and also others to check out what are the good things u recomend before starting any laser treatments.

http://www.laserskinsurgery.com/lasers/types.html

Thank u so much for all that can reply.

Violla

ray, thanks for the nice welcome. yes, i have an sci. c5/6. i look forward to
chatting with the members of this and the other clubs. kerri

Any suggestions would be greatly appreciated. Has anyone had EXTREME
swelling with the flare ups. I have so much swelling in my face
that my my left eye is half shut. My whole face is burning so bad.
I don't know what caused this out break. I have been so good with my
diet and then BAM. Red all over. Big Red Raised patches everywhere
and really really swollen bad. I am guessing one of the three
reasons below may have caused my flare.
I used a new foundation by clinique and am wondering if they may
have caused it but am not sure. I also tried a new moisterizer
Jojoba that was recommeded by a site on the internet. AND I did a
good sping cleaning today on my house.
As everyone knows this DISEASE is like a guessing game(NOT FUN)
trying to figure out what causes the flares. But this is one of my
all time WORST yet. Does anyone have any suggestions? Has anyone
had this type of reaction from any products? There is no way to
even cover this it's so bad. But for future reference can you
recommend a good moisturizer or foundation/cover up for when I do
flare. It's not very often I wear make-up but some times when I am
going out I like to try to hide the flares but don't want to make
them WORSE..
Thanks so much for any help you can give.
Kelly

Welcome to the club. I'm Ray, filling in for
Angela who's offline for a couple of days. From the
clubs that you belong to, I assume that you have sci. I
also see that you're in the Diner. Isn't that one of

Eileen, not heard from you lately. You doing ok?
Post and let us know things are going well. (Or not so
well, if the case may be). Tried to check your profile
for an email but got the "Profile not currently
available" message.<br

HI Alice!
Basically the diet that I follow is on this website. www.hacres.com
But I cheat! LOL
This site is packed with info on RECIPIES,TIPS,TESTIMONIALS etc,,,.
If you have severe rosace and you judt do not know what to eat this site is
a HUGE help!
Not only will your complexion improve but you will feel healthier!.
It looks bad at first! LOL,But believe me it gets easier!.
I now actually CRAVE healthy foods.
No carbs.No junk.But I do crave a little fat and salt!.
That has always been my weakness.
My main regime is JUICE JUICE JUICE!!!.
CARROTS and CANTELOUPE are a daily MUST along with my ALOE VERA/MILK THISTLE
herbal drink(which removes toxins)
I also take lots of B vitamins,C with RUTIN and BIOFLAVONOIDS,
I take ACIDOPHILUS for the Intestinal health.
I take vitamin E.
MSM has high amounts of SULFUR which I also take.
I hear that NONI JUICE has worked wonders for rosacea.
I havent tried it yet but I am going to take it for the health benefits
anyway.
Thats about it!
For EXTERNAL use I use VITAMIN K CREAM and I wash my face with EMU OIL SOAP.
If I think of any more I,ll let you know!
Marilyn

Just read an article on C-23 cream, which is basicaly vitamin C but used as a topical cream not eating it. Aparently works wonders on wrinkles and sun damage. Might be worth a shot.

Im pretty sure my rosacea has developed from being sunburnt numerous times, as I live in Australia its pretty hard not to get sunburnt atleast once.

Reporting: 12-19-2000
A conspiracy has been uncovered by sources which wish to remain
anonymous for fear for their lives. A deep cover agent with the CDC
(Center for Disease Control) has reported that a Lobbying group
representing the Opthomalogist/Optometry Board of Physicians, has
recieved money to fight the funding of research in the field of
Narcolepsy.
It is believed that if these Narcolepsy researchers DO find a cure
for Narcolepsy, then Eye Doctor Revenue will be cut drastically,
forcing many of these Eye-Men and Women into early retirement.
If you are confused please see the recent poll which shows most if
not all respondents did have some vision deficiency.
Investigating...
-Andy
P.S. This is a joke. (I hope you all didnt need to read that to
understand the jocular nature of the above article)

Marilyn,
I think you are one of the most normal people
I know. Your body (physical health) is a little
messed up, but your mind sure isn't. You could
run rings around a lot of people who think they are
"normal"! I think you are a great person with an
amazingly positive attitude considering all the
things going against you.
I'm sorry to hear about you having to go into the
hospital. Hope you are feeling much better. You
always make me feel better. I have not been writing
in due to health problems myself, it looks like I
might have to give up the dexedrine due to severe
side effects of racing heart and what i call the
"herky jerky" which is severe muscle jerks and
tremors which look very much like a seizure (my doc
actually had me do an eeg to rule out seizures, which
it did). Anyway, I'm off meds for now and back to
no energy and sleeping a lot more.
Take care Marilyn, thanks for your continuous
support.
Stacy

The Epstein-Barr Virus is one of two separate viruses that cause Mono. The
other is more prevalent I think in other countries. I've had this for 9 yrs
now and what caused them to realize what was wrong and test me for it were
skin lesions that the doc said appeared to be herpetic in nature. So, he
tested me and he was right on the money. The Epstein-Barr virus is one of
several herpetic viruses. Isn't it strange that we don't make the antibodies
that others make that show we have had this but it is not active? My doctors
said it was a problem with B-cell immunity that my body didn't recognize the
virus and make antibodies so that I didn't have chronic illness from it. We
tried diets of all kinds. We even tired IV Zovirax and it did no good.
Then 2 yrs ago, I began having severe cataplexy and then later EDS.
Wouldn't it be nice to just be normal? Whatever that is. lol

Marilyn
I am so happy for ya..how do I go about finding pulsed light treatments where I live?? and did you have any side effects after treatment like soreness or irritation?? I have moderate rosacea with the red bumps or pastules. what herbs do you take?? thanks for any info you may have.
Lanisa

In a message dated 12/19/00 6:19:55 AM Central Standard Time,
narcolepsy@egroups.com writes:
Ditto. My Epstein-Barr titus was quite high (although it could have been much
higher). I'm not aware at all of having mono (and I tested negative for mono
twice in the past 3 years). I did do some research on Epstein-Barr after I
got my numbers back, and the doctors estimate that something like over 80% of
the (US?) population would test positive for the virus antibodies. The
difference is that some people have very high levels of antibodies, implying
multiple infections. When they discovered that just about everyone tests
positive for Epstein-Barr, they stopped thinking that it was associated with
Chronic Fatigue syndrome.
Just another frustrating clue...
-- Leslie

Had a wonderful Thanksgiving too!! Still sleepy
from all the cooking! lol Ray sorry about changing
club pic..I had downloaded a bunch of pics for the
club..Thought we needed something that twinkled!! ..People
where I live already put up their lights and christmas
trees..aahhhh !<br
cleaning service wiping down the walls from the soot that
was caused by electric heat. After they are done then
I will get going on decorating..<br
of leftovers from Thanksgiving!!<br
take care all..<br
Angela,Jim

I had a great Thanksgiving; I hope everyone else
did too. Now, 'tis on to Christmas. I hope that this
holiday season proves fun and happy for all, not too
stressful, lots of renewal of friendships and certainly a
focus on the real reason for the holiday. My best to
everyone.<br

I had the new PULSED LIGHT treatment yesterday on my nose.
Right now I have emu/tea tree oil on it which heals it real
FAST.
As I have already stated here in many of my posts I have very
*mild* rosacea and I control it through diet and natural
herbs etc,,.
It is mild and I want it to STAY that way sooooooo I thought
that I would get a touch up on my nose for summer.
Anyway,I had laser last year.(3 full face treatments)
It was not the pulse light.
Anyway,,The one that I went to last year was more EXPENSIVE
and really wanted to run up my tab on cleansers,gels and pills!
All I wanted was the LASER treatment!.
I refused the $120.00 face cleanser LOL and the metrogel and the
pills.
I asked him what he thought I was made of?Money!
This clinic is the BIGGEST facility in my city
and they have advertising on tv and radio non stop so
they have lots of overhead to pay for.
Their ad takes up the whole page in the phone book.
So I told myself,they must be the BEST!.
But as I seen dollar signs in his eyes ($$$)I said that I would
never go back.
I got SICK AND TIRED of all the bloody PRESSURE to buy this
and buy that when I only have a light pink complexion and
NO acne!.
Sooooo I made an appointment last week for this new
clinic in my city.
I called them up and asked them some questions.
They are very new.
Their clinic had only been open for six months.
They had taken all the courses on laser therapy and hair
removal etc,,.
Also,,They are in a DOCTOR SUPERVISED setting sooooooo
I said ok,,I will give you a chance.
So,I go there yesterday and I IMMEDIATELY feel at ease there.
You know,,when you get a GOOD feeling about something?.
They were very nice and kind and funny!.
They made you feel comfortable.
Their facility was very RELAXING with soft music playing
and a nice smelling candle burning.(In the laser room)
Now get this!!!!!!!!!!!!!
This was my first time there and I had a $50.00 coupon!.
Sooooooooo,that knocked my PRICE right down!.
She also gave me an extra 20% off because their wand had broke!
and they were waiting for the new one ASAP!(that morning)
So because I had to wait I got it even cheaper!
I paid in total only FIFTEEN DOLLARS!! LOL
What a deal!
Also,,,They did NOT try to PUSH all these creams and gels
and pills on me!
They told me I did not NEED it as I am NOT a severe case!!!
I also said to them that I will probably get one more
treatment(at a VERY good price) and they said you probably
wont even need it sweetie!!.
Unreal!
The other clinic wanted more more more!!!.
Also,,I told the gal that did my nose that I had read all about
the PULSED LIGHT laser on my rosacea forum!!and that I was
tickled pink that they had it!!.
This PULSED LIGHT is even better and faster than the old
laser PLUS I paid LESS!.
My point is,,,SHOP AROUND!
There are soooooooooooooo many people including
*some* doctors and clinics that will financially
take advantage of you!.
Lets face it!
COSMETIC SURGERY IS BIG BUSINESS!!!!!!!!!!!!!!!
I told these very kind and HONEST people in my NEW clinic
how IMPRESSED I was with them and that they have me as a
customer for LIFE and that I will refer others who may NEED
their servives!
Also,this new PULSED LIGHT does NOT require EMBLA cream to freeze
your face which ITSELF CAUSES rosacea!!!
Im so happy I found them!
Shop around people!
Look for CARING,HONESTY AND REASONABLE PRICES!.
Have a great day!
Marilyn

Love the new look, Angel !! :)<br

Sulfur works great for me too.

Always has.

If you have amnesia and experience deja-vue at the same time, does that mean
you feel like you've forgotten this stuff before?

Just dropping a Holiday wish to All...Lets give
Thanks to our loved ones and Friends. While we enjoy our
meals, Don't forget to say a prayer for all of the
people that we lost and their families!<br
your loved ones..and be Thankful for what you have no
matter if your rich or poor, for you are very lucky to
have Family and Friends and support from people all
around the globe in this club.. GOD BLESS YOU
ALL...<br
THANKSGIVING !!!!! Luv, Angela,Jim and Ray

Hi, Sara, glad to see you joined our quiet little
group. Are you disabled or do you have a relationship
with someone who is? Post anything you want anytime
you want. Hope you feel welcome here.<br

No Trick-or-Treaters this year for me. Last year
a few of the grandkids were running around getting
candy...but most of them are already getting to old for
that...but several of the older ones had me talked into
fixing their hair for the Halloween Party. But today the
youngest kids would be showing me their loot, and telling
me all about it, and then telling me what they
wanted to dress up as next year...and see if i had any
popcorn balls or fudge left...had to make candy for the
family to get into but had store bought wrapped stuff
for Trick-or-Treaters....well, with the acception of
the kids the grandkids told to go get the good stuff,
lol...<br
here in Michigan, because everyone is moving farther
away, the family is spreading out...the 2 families with
the most kids needed a new start too.<br
get out walking last night with the excuse of going
out to eat with a girlfriend, saw a cow and a full
dress infantry soildier riding their bikes by, and
little ghosts, witches and goblins running door to door.
I wasn't in any hurry to get to the pizza
place....and when I got almost home the neighbor said I had a
great pizza delivery costume on and wanted a treat
themselves! LOL !<br
either, Ray!! In fact if some of the littler grandkids
were here they would go nuts because it such a big
city! So many houses...so short a night!!! (they would
be like squirrels and have candy packratted for a
year!)<br

If you look at any of the emails posted on this forum you will see that
simply sending a blank email to:
Narcolepsy-unsubscribe@egroups.com
<mailto:Narcolepsy-unsubscribe@egroups.com
And you'll be off.
CV

anyone here do pumpkin carving for Halloween? If
you do and if you want to photograph your work, post
it in our photo section. Are any of you going to
keep your little ones home this year? Mine are all out
on their own now, but if they were home, I'd still
let them go trick or treating. Wouldn't bother me at
all. Anyone else have any ideas?<br

Hello Maras,

Two weeks ago I sent you a private message with instructions about how to unsubscribe to this list. You cannot unsubscribe by sending messages to this list. No one here can unsubscribe for you. Go to the following url http://www.egroups.com/mygroups (Click on the blue) It will take you to your page called "mygroups" where you can unsubscribe. If you have difficulties send me a private email and I'll see to it that you get help in unsubscribing.

Nancy

Hi wind, sometimes I get so preocuppied around
the house then I check the messages and I totally
forget my clubs. Thats terrible. My most important
messages are on here. I walk during the day. Early in the
morning. I also try to walk after eating. Our world sure
is a mess isn't it? The best news is that in spite
of everything that is going on around us and to us,
is that GOD is still in control. This is such a
great truth and along with it is great peace of mind. I
really wish more people knew Our Father on a more
personal level because they sure wouldn't be terrified as
most folk are. We know that there will be alot of
stuff going on but one thing to always remember "if GOD
be for us, who can be against us"? HE is definitly
for us so we hang tough , trust in HIM, and live life
to the fullest. Love Eileen

Has anyone seen Sleepy in Georgia?
If you do tell him he REALLY needs to get in touch with his Kat & Katie
in the Heartland! We've moved, but phone number & e-mails are still the
same....
purrs,
Kat

where,s all the posts?

That is a wonderful attitude to have! Keep it up!
It sure helpe to try to think possitively even when
things are bad and you don't know how they could get any
worse...People see you handling the pain and bad times with a
smile on your face and thanking God for everyday you
have on this earth, and making others around you smile
even though you might feel like crying inside, and
they feel they can handle things a little better
too...a smile is contagious!<br

Wow, a Mummy, sounds cool!!! If its cold that
night you can wrap him up with his coat on! I always
had trouble with getting my son dressed up and then
having it too cold out....he didn't like wearing a coat!
Or it would rain!<br
and little kids...but this year I'm determined to
enjoy the hollidays...Last year I just moped around and
felt sorry for myself because I was alone, not this
year! LOL!<br
pumpkin to talk....I might be able to make him scream and
run away by talking his ear off, (wink)<br

Hi there.

I have heard some very good results about the demodex soap bar,but again,,everyone is different.

The only way to find out is to cough up the money and try it yourself.

The good side is its NOT that expensive when you consider alllllllllll the other

remedies,creams and gels that are suppose to help rosace but dont.

Also all the books that are out by fellow rosacea sufferers which you must BUY!LOL

You could be paying $50.00 or more for some rosacea miracle cream that dont work.

I would give it a try!

All the best!

Maeiltn

THis is a test to see if this posts!
I posted up several posts today and NONE are showing!!!!!!!!
Also,I replied to posts.about five.'Its been HOURS and they are
NOT'showing!

Today was a low pain grade day , until this
evening I was turning every which way but loose with the
Muscle spasms. It is so strange having back problems.
One minute you experience pain or numbness in one
area and then it leaves and shows up in another area.
I have to accept the fact that I must not try to do
those things that I have had come naturally all my
life. Im okay with it , because now I am searching for
challenges with being disabled. There are moments when I get
breaks from the pain. Sometimes I wonder if I might have
gotten healed ,but then I do something to flare it up
and reality hits me. Im a can do type person so I'll
chin up, think of good things and persevere. Love
Eileen

I have tried the face doctor soap and it was very strong and made my face much worse. Maybe for some with pimples and paps this would help. I did not care for it .

Say! Can you make the pumpkin talk? Have you seen
the witch that flys into doors and gets flattened. I
saw one that was on a telephone pole. I took a
picture of it. I had never seen one of those before. My
son 13 years old wants to be a mummy this year. I
think it would save a little on costumes. All I have to
do is get some old white sheets. May be I have some
Maybe i don't . He may be a decorative sheet mummy. My
daughter Sarah I don't know yet. She is 14. My mom told me
that when she went trick or treating. That they did it
through the Senior year. Hmmmm.... times have changed.
Hang tough everyone Love Eileen

Hello,
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Hey now! That pumpkin just stuck it tongue out at me!!! LOL<br

Thank you all very much for answering sounds like our genetic make-up has a lot to do with our rosacea, by the way i am a New Zealand Maori with brown skin, red cheeks, black hair and brown eyes i do have a scottish greatgrandfather (paternal) and an Irish greatgrandfather(maternal), from whom perhaps i have inherited this condition, and perhaps the trigger for me was my second born daughter who was born much to my surprize with very fair skin ,blond hair and blue eyes, her father is also a New Zealand maori with a welsh heritage however he isnt fair either, and though it isnt nice to say but she is a total genetic throwback...lol.......well thankyou once again to all who responded to my question

[INLINE] Coralie Gardiner [INLINE]

Nancy, I have selected that the poll will automatically report the results
to the whole group upon completion of the poll on December 8th, 2000
-Andy

It contains zinc oxide, which is a physcial sunblock. I have
purchased physical sunblocks consisting of 'invisible' zinc oxide. I
use that if I go to the beach or something like that. I would rather
purchase a separate zinc oxide product. I find that zinc oxide clogs
my pores...by definition it's a physical sunblock, it stands to
reason that it would clog your pores somewhat.
Rosacea LTD III contains sulfur. No surprise there. Sulfur is a well-
known acne/rosacea treatment. I prefer to use prescription strength
though. I wouldn't waste any money on something OTC. My skin responds
very well to sulfur products. Right now, I'm using Rosula. It's
prescription topical sulfur product.

I sure haven't but I would like to hear from those that have tried
it. In the meantime I will ask my dermatologist. I trust her
opinion.
Susan K

Welcome, Eileen ! :-)<br
quiet of late but maybe we can stir things up a bit.
What is a "generations" unit? I worked in the medical
field for 27 years, 13 in a hospital, and I never heard
that term. You say that you are now at home; do you
work from home or are you on some kind of disability
income? Are you married? Any kids? If so, are they old
enough to be able to help you with the day-to-day chores
around the house? Is the numbness in your left side a
constant thing or a come-and-go thing? I cant' imagine
what that must be like...I go nuts when one of my feet
"go to sleep". lol<br
intro and again, welcome.<br

Clynch, don't get depressed about not getting referred to a sleep doctor,
remember being positive for Narcolepsy is approx. a 1 in 2000 chance. So
there are other possibilities to explore.
Mebbe you should look at other possibilities, especially if you are not
suffering from the other symptoms of Narcolepsy. For example Cataplexy, or
Hypnagogic Hallucinations , or Sleep Paralysis, There are viruses out there
that cause debilitating fatigue, and mono is one of them.
Andy

IS THAT Soooooo Wrroooooonggggg?
Please I'm just trying to find any relationships among other diseases or
symptoms, I am not a monster!
Nancy please give your approval if you would to the whole group.
-Andy

Thank you for the invitation. By the way , I
never made it with the fast the first day. Ill give it
a try tomorrow. I got hurt at work more than one
time. I was working at a hospital in the Generations
Unit. We were always short of help so I made do myself.
I got hurt there and then had to leave the job
because I was no longer able to lift. The next job, still
in the hospital I worked in the kitchen again very
hard work. This time I damaged my shoulder again and
my upper back with some pinched nerves which cause
numbness on my entire left side. Can't describe the pain
when it brings the numbness on. Kind of like a sick
strain ache. Also have degeneratiion of spine. So here I
am . At home. I walk and I know that there is a
purpose for everything in this life and I am confident
that Our Creator has a purpose for me because Im still
here.Eileen

One other thing I can thank my Irish ancestors for... rosacea!

Kate

Thankyou Ray. My stepson Charlie was working on a
water heater when it exploded. Water heaters have this
valve on top of them, and when pressure builds up this
valve opens up and shoots water right out the top from
what I'm told. The water heater was very old and he
isn't to clear on exactally what happened, things
happened so fast. But he is awake and talking! The
grandkids said he isn't to prety, no eyebrows or beard, he
was burned really bad....God worked another mirical
when Charlie woke up...he has no home right now, the
entire back end of the trailer is destroyed, but has a
close knit family, and his job will always be there, he
won't be homeless by the time he gets out of the
hospital!<br

I found some worthwhile tips at the Rosacea Ltd.III site. The one about
hairspray really hit a cord. I may have had a flare up because I switched to an
arosol from a pump hairspray and I wasn't guarding my face. Needless to say, I
will be going back to the pump! That might even explain why I have the
breakouts on one side of my face and not the other since I spray much more on
the left. I tuck the hair on the right side behind my ear and if I spray it goes
towards the back of my head.
I've also already seen a big difference drinking the extra water and reducing my
stress level. Just the thoughts of something stressful would cause me to flush.
Now I take a deep breaths before during and after having to think or deal with
something stressful.
I was also reminded that I need regular excercize. I know this will help me
reduce stress and will make it more of a priority!
Hope this helps someone.
Susan K.

Well, just wanted to update you guys. My doctor (regular, not sleep doctor)
has to go to a seminar, so my December appointment is cancelled. That means
I won't get the referral to the sleep doctor until late January. How
frustrating.
I've lived with N nearly all my life, as near as I can tell, and just when
things were working out I had to move. Now it seems like I'm NEVER going to
get to see the sleep doctor. I was all set for my sleep tests just before I
had to move. Now I'm wondering if I'm ever going to get there. *SIGH!*
I wanted to say that I suffer from fatigue also. I was diagnosed with Mono
in 2nd grade and have tested positive for it several times since. I don't
know if that's what causes the fatigue, but I do get it. It comes and goes.
In addition to the sleepiness. Seems like it happens for a week or so at a
time, then other times I go a long time without the fatigue.
CV

I'm medium to light skinned of Northern European and French descent with blue
eyes. My comment to the darker skinned person is that perhaps in your family
tree there was someone in the lighter skinned catagory. Today I saw a middle
aged black woman with what appeared to me Rosacea, but I'm no expert. I think
hormones has a lot to do with it too!

My fatigue seems to have no particular
pattern. Some days i just write off as i'm going
to feel like crap all day today. others the
fatigue only lasts for short periods of time. i do
know if i don't get enough sleep for a few days in
a row, i might as well hang it up. but it is not
like me to see a pattern in such things so there
very well may be one and i am missing it. anyone know
any good vitamins for this-i have rls too, but it
only happens occassionally so i don't do anyting formal
to treat it. and yes it is very irritating! i've had it
since i was young and i never talked about it because
it was just another one of those weird things i assumed
everyone experienced-hard to describe. then one day i
was looking in the dsm (a manual for people who diagnose
people with various disorders) and lo and behold i saw
it rls. i couldn't believe there was a name for it. it
felt pretty good to see that. Nancy, Marilyn, and others
who have responded regarding my new jerking syndrome-i
talked to the nurse practitioner who said this is
unrelated to n. or c. and suggested i see my general
practitioner and possibly a neurologist to rule out
certain things. i talked to the psychiatrist i work
with (the one who figured out i had n. first) and he
agreed and said it sounds like a partial seizure, other
possibilities are out of whack electrolytes, some kind
of lesions in the brain or worst case senerio, a brain
tumor-great. i'm being optimistic on this one and hoping
i just need some vitamins and minerals. he said i need
a good work up and an MRI to check everything out.
it is hard to concentrate at work with all this going
on. you guys are the biggest support i have right now.
thank you!
stacy

I've raised this question before, but think there is much more to be
explored in this regard. I'm currently on Ritalin which is keeping me awake
when I need it to. But the fatigue is still present. I've found that it is
much more pronounced during the week when I have to get up with the alarm
clock. Weekends, when I can sleep until I wake up naturally, I don't feel
nearly as limp and heavy. My doctor has ruled out the thyroid connection. A
while back someone in the group observed that it seemed much more significant
what time they got up in the morning than when they went to bed at night, and
since reading that, I've noticed the same pattern in myself. My fatigue at
work comes in the mornings, lasts 3 or 4 hours, and then I begin to feel more
normal, even though the morning Ritalin is pretty much gone from my system.
But on the weekends, when I sleep until I wake up naturally and I can move
through the morning at my own pace, the fatigue cycle is absent. My doctor
is hoping we can regulate my sleep cycle at night and that will help reduce
the fatigue during the day, but so far we haven't been successful in the
attempt. I'm taking vitamin, mineral, and supplements as well. Stacy, the
OTC routine you outlined a couple of months ago wasn't enough to keep me
awake or deal with the fatigue during the work week. I tried it before I
agreed to the Ritalin, hoping to avoid the heavy duty drugs. I'd really like
to hear some more discussion of what I've come to think of as "the fatigue
factor", getting some further input from some of you out there who are
dealing with this, too. Thanks.

light skin with red hair

Kat,
I count my blessings that I am able to control the RLS I have. You are in
my thoughts and prayers.
Nancy

Hi all

I have a question for all of you....Are you mostly very fair white caucations? I ask this because i am not!!! and my derm said it mainly effects the above catagory and she had never seen before me a ethnic person with this desease so i would like to know if i am the exception to the rule or i just have an inexperienced derm. I am not trying to be nosey however this is a question that is on my mind. i hope you all find the time to answer.

Thank you very much Coralie

[INLINE] Coralie Gardiner [INLINE]

I have RLS, and have tried everything! all kinds of minerals, drugs,
therapy, warm baths, walking, I'd even stand on my head if I thought it
would work some nights! In the last year tho it seems that mine has
been worsened by my diabetes and neuropathy.
I also have a friend who doesn't have narcolepsy but does have RLS, his
comes from nerve damage from an accident many years ago. It also is
only on his right side, and involves his arm and leg.
We have also found that we seem to have bad nights with RLS on the same
nights very constantly and haven't quite figured out why yet, because it
isn't always a storm coming in.
It does appear that alot of people have RLS but it isn't diagnosed very
often, and doctors know how to treat it even less.
One symptom that seems to be common with everyone....at least with the
support group I went to and everyone I have known and that
is......IRRITATING!!!!!!
If you'd like to check out some sites about RLS here are some links:
http://www2.stanford.edu/~dement/rls.html
http://www.rls.org/main.asp
http://www.wemove.org/rls_pat.html
Well that is my opinion about RLS.
Kat

hi i am a mild sufferer and i do have very red eyes is this part of
rosacea? can some of the creams cause premature aging?thanks

I've raised this question before, but think there is much more to be
explored in this regard. I'm currently on Ritalin which is keeping me awake
when I need it to. But the fatigue is still present. I've found that it is
much more pronounced during the week whe