WP Weblog

Hi Ray...I found the link on Jaspers Spinal Column. Very nice web site I might
add. Dorla

KW,
I have recently found some products I am happy with. I, like many, have
tried quite a few things and am happy to finally feel I am under
control. I ordered Rosacea Care sample kit ($25 from rosaceacare.com)
and saw a big difference right away. I am reordering the cleanser,
serum and moisturizer. I think the serum is a big help. Its pricey, but
it does reduce the redness and breakouts, so I don't mind. It goes a
long way. I have also had to make some lifestyle changes. Coffee seems
to be a trigger for my most severe breakouts. Even my ears itch. I love
iced coffee in the summer, but have had to give it up. I think it is
more than the caffeine, some other chemicals, because I can't tolerate
decaf either. I've also had to give up my occasional alcoholic
beverage, but no big deal for me. What I was most worried about was the
moderate outdoor exercise I get from bike riding was always giving me a
red face, and therefor more breakouts. But I can't give that up,
because it is the only exercise I can stand. But with the Rosacea Care
products I think I can get away with it. I tried Rosacea II and it
worked a little bit for awhile, but eventually seemed to have no
effect. I try to drink a lot of water, pour cold water on my head when
I bike ride, take evening primrose supplements and have started
acidophilus tablets (at the same time as rosacea care, so maybe it has
something to do with this new success). I would have redness and
postules and would be embarassed if I forgot to put cover-up makeup
over the rosacea, but now I go makeup free everywhere. I have also
ordered Linda Sy's zinc-o cream because sunscreen seems to bother me,
like most other rosaceans. But it hasn't arrived yet, so I can't say
anything about it. Keep in touch.
Anne

jbahr00-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=112
Christie,
Thanks for the reply.
Have you heard of any vitamin or mineral that has helped any symptoms
of N?
I'm willing to try anything right now. I'm so tired all the time but I
need to
do what I have to do to live.
I'm now on Ritalin, Clonazepam and Imipramine. I am now in the process
of switching from Imipramine to Vivactil because my mouth is so dry and
the C is
still a problem.
I'm battling the VA to prove that N started while in service. They
don't think
so. I've appealled twice. Should hear in a couple months for decision
on the
second appeal.
My life is so frustrating right now. No one that I know or spend time
with totally understands what I'm going thru. Some don't care to know.
I don't know if I should stop considering if these people are my
friends or not.
I lost my job because of cut backs. Then 4 months later I got it back
but a lot less hours which is OK. I now am enrolled in Veterans
Re-entry Program.
It's basically school but without credits and go at your own pace. I'm
in this program for two reasons. I receive $ from my G.I.Bill (from
when I was in the
military) and I plan on going back to school if I can physically handle
it.
Right now I couldn't handle a credit course.
Enough of my bickering. Back to some more questions. Outside of
medicine...
Has anything helped you for any of the symptoms of N?
Has anything helped anyone you know for any of the symptoms of N?
By the way, I have C, AB, HH, SP, EDS, DN-TS, USa, PLMS and other minor
stuff.
How about exercise?
How about diet?
How about meditation?
How about a BILLION dollars?(just kidding)
At least I have a sense of humor with this %&#@!
I am all ears right now. I'll try anything too. Well, almost anything.
THANKS!
Shawn Albaugh

Hi, Tom, and welcome. Dorla, welcome to our club.
Tom, do you have any kids? Is your work with Social
Services a fulltime job? Does your wife work? You can
probably tell that I like to ask lots of questions,
huh?<br
club via someone's personal web page? Whose? Well,
it's good to see you here as well as the other
clubs.<br

Hi<br
UK.<br
and have been a para for the last 16.<br
injured in a fall while working in a shipyard.<br
now work as a Strategic Development Officer with
Social Services (I specialise in services for younger
disabled people).<br
the world and to help support those who are newly
injured.<br

albaug-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=109
Shawn,
I am directing this message to you but the information is for all
concerned!
I don't know if you're currently receiving help from the VA, but
whether you are or are not, you should contact the "Disabled American
Veterans" right away. Call the nearest DAV regional office (NOT THE
VA!) and ask to speak to the National Service Officer. Explain your
situation to him and ask for advice. He can provide this, as well as
legal advice, and even act as legal council for you to the military and
the VA. They are there to help make sure you get what's rightfully
coming to you!
If all that you said is in your military medical records, then you
probably have a "service connected" disability according to the VA's
rules and may be entitled to a monthly disability check from the VA.
Check with the DAV NSO to make sure!
I am currently in the process of building a new web site for those in
the military, any form of the reserves, and veterans with disabilies.
It will be primarily for "Sleep Related Disorders" but will have info
pertaining to other disabilities as well. There are few good web
sources of information on disability claims related to N. and other
sleep disorders, and I intend to do something to remedy the situation!
I will let you know when the site is ready and online.
Just for info: I was in the Navy and Naval Reserve. I was on River
Patrol Boats (PBR's) when my first real symptoms of N. start becoming
apparent! I've since moved to the Army National Guard where I'm
currently a Staff Seargent.
SSG Philip E. Evans
1st BN / 184th INFANTRY (Air Assault)
philip-evans@...

You need Dr. Geoffrey Nase's book. Get info on how to order from his
website. It really gives me hope. Good Luck.

Hello group members.
I am a 21 year old female. In the last 6 months I have been diagnosed
with acne-rosacea and in the the middle of my biggest/worst break-out
to date. I can't get it under control and am on my second cream
prescription from the doc. I am lacking self-esteem and confidence.
I can hardly look in the mirror with tearing up, I am hoping so much
for a day I can look in the mirror and see more than just red
blotches. I am asking for any of you to send me your success stories
of getting your case under control. What is working for you guys, if
anything. I am embarrassed to show my face in public, I feel terrible
for anyone having to look me in the face to have a conversation,
honestly I have been apologizing to my partner for looking the way I
do, luckily I have a great personality or I'd be doomed at this point.
Tee Hee, must have a bit of humor with this subject. Anyways, if
there are any sufferers out there who can give me some person to
person advice.
I have been on the internet for days researching this and I understand
that I should change my diet and stay out of the sun, avoid blushing
pretty much is my understanding. However, what stops the burning and
inflammation that happens through-out the day? I have found all these
skin care systems (cleanser, moisturizers, creams.) much like the
Proactiv System for acne, wondering if maybe it is something I should
try or if I should stay away from it all for it may just be a scam to
get money out of rosaceans. I know what all the web sites say, I just
want to hear from real people who have tried these things and have
been able to find a treatment that works. Thank you, please email me
personally as well.
Thank you for all your time and consideration to help me feel good
about looking in the mirror again.
kw

m jean tooher <mjea-@...
Hi,
Let me see if I can help on this issue. By profession (main one of
several), I am a Y2K specialist (currently with GMAC but have been a
consultant to numerous other companies).
First of all, the procedure that you describe only fixes the method of
display on Windows. It has nothing to do with the Y2K rollover
problem. This procedure made the rounds a few months ago in numerous
emails but has been flatly denounced by Microsoft. Go to the Y2K area
on the Microsoft web site to read their comments.
Secondly, Y2K problems are different on Windows 3.x/95/98 than they are
on Windows NT. NT is a true operating system while the others ARE NOT!
95 and 98 are GUI shells that run on top of a version of the DOS
operating system. The rollover problem occurs in the BIOS program that
is held on a ROM chip and built into the hardware of your computer.
Most machines built in the last few years have no Y2K problems at the
hardware level. Older machines may have a rollover problem. On these
older machines, Windows 95 and 98 do not fix the problem. You must
apply a patch (available from many different places on the web) to fix
the rollover problem (or upgrade the BIOS program on the ROM chip to a
compliant version).
HOWEVER! The Y2K rollover problem is only a problem on "Real Time",
"Process Control", "Network Server", etc. type systems!
If you are a normal user, you probably turn your machine off at night
anyway. The problem only affects machines that must roll the date
forward at midnight Decemter 31st, 1999 to the new year! If you
machine is not compliant, just reboot the machine, after midnight, on
Jan 1st, and reset the clock to the correct date. The rollover problem
affects nothing else!
Personnaly, I would be more concerned that the embedded processors in
you microwave oven, your VCR or camcorder, the control processor of
your car, etc. will no function correctly! These are the hidden
processors that most overlook!
If you have any more questions or concerns, please feel free to contact
me.
Philip E. Evans
philip-evans@...

My profile pretty much tells all about me. I
don't know much more to add. I am puter addict and love
to visit personal web sites. Have a daughter who is
a SCI C-5/6. I live in Iowa and recently had a
kidney removed that had a cancerous tumor. I also have
COPD and was medically retired two years ago. When I'm
not on the puter and a lot while I am in a chat I
crochet afaghans. I knit some but not as proficient at
it. Hubby still works and will turn 60. I Have three
grown daughters and my eldest gave me two grandsons,
aged 16 and 18. I am expecting a granddaughter in May.
That's about it. I love to chat and find new friends. My
memory is pretty bad and not getting any better..lol
Dorla

Thanks Brady....
So your the man that wrote the rosacean diet
book right ? .. I looks like your a bit of a ledgend
around here .. Im interested...
one again .. thanks for your timley response
regards
alan
--- Brady Barrows <brady.barrows@...
<HR
<html
<tt
there has been recent discussion about IPL therapy in
this discussion <BR
group which you can read the public comments<BR
at this url:<BR
<BR
<a

Jean,
Vivactyl(and all similar Antidepressants)from my experience do not control
cataplexy ultimatly, but actually exacerbate the condition. If you're really
having problems with C, GHB is the only way to go. I know GHB has been given a
bad name by a lot of druggies that use it for nefarious purposes--but there
again the entire story is not being told to the public. The deaths that have
occurred from GHB are because it was not medical grade GHB, but something that
was concocted in other than laboratory conditions in someone's kitchen.
I'm happy that Provigil is working for you--I find it only nominally effective
and continue to use some of the dreaded methamphetamines as well.

I'm sorry I havent been on-line this weekend, it
was my youngest's 13th birthday...But I did want to
welcome all the new members that joined the club..and yes
dorla..it's A-OK with me that you joined...I'm glad that you
did! :) Again as always, everytime a new member
joins..I ask everyone to post alittle about themselves..so
we can all get to know you better..Please try to do
so in the future when you join ok??<br
very much.<br

Hi all,<br
have a look.<br
href=http://steve-clark-sci.members.beeb.net/spinal-column/index.html
target=new
br

there has been recent discussion about IPL therapy in this discussion
group which you can read the public comments
at this url:

Was surfing around and a personal site pointed me
to this club. Hope you don't mind my joining.
Noticed some of my old friends belonged here and have
been missing their posts in the club I first joined.
Thought maybe I could get back in touch with them here.
Dorla

Hi everyone !!!
I need some advice .. I have been diagnosed with rosacea for
about a year now .. and have been using dox (200m a day) and rosex
gel .. but it's come back again .. and it wont go away ... and MAN..
i have just about had enough of the antibiots .. the nausea ... lol .
Anyways .. im thinking of using light.pulse surgery HAS anyone had
any succes out there .. I have caught this thing fairly early and
wont to try somthing that does not involve these drugs ... I have a
bad feeling about them ..
Ps i had some acupunture the other day ( just to give it a go)
and i think it made a little diffence
PLEASE REPLY .. I WOULD REALLY APPRICATE IT ... AND DOES ANYONE LIVE
IN MELBOUNE AUST ..
:) BYEEE

Hi, BJ, thanks for the note. What kind of
problems are you experiencing with your back? And why?
Accident? When? When will you see a neuro? Is surgery of
some kind likely? Have I asked enough
questions??????<br

I have no idea if he has rosacea.
brady

In a message dated 10/19/99 7:00:20 PM Eastern Daylight Time,
albaugh@... writes:
<< I have narcolepsy and I have been looking for someone to talk to about
this disorder. I have questions I'd like to ask and comments to say.
HELP!
Ask away.. that is what u will find here. Lots of good people asking, sharing
and commenting..
Christie

my name is bj angel invited me herei have alot of problems with my lower back i
am gonna go to a neurosurgeon here soon well not much else to say <br
<br

I have narcolepsy and I have been looking for someone to talk to about
this disorder. I have questions I'd like to ask and comments to say.
HELP!

Good morning,
I was looking over the database for this group and came across the
list of Famous Rosaceans.
Does anyone know if one of my favorite actors, Karl Malden ("The
Streets of San Francisco;" "Fatal Vision;" American Express
Traveler's Checques commercials; and much more) has rosacea?
I mean, his nose...Yikes. Could that be rhinophyma, or is that his
natural nose?
It doesn't really matter; either way I'll still like him. :) Just
wondering though.
~Jan

Howdy, goodhope, welcome also to the club. Hope
you also enjoy your visits. Can you tell us something
about yourself? Your profile doesn't give us much
insight into who you are. And what is your interest in
sci? Are you injured or are you acquainted with
someone who is? Hope to hear from you soon...<br

GEE WHIZ! . . . . All this "chain rattling" is keeping me awake . . .

Yawnnnnnnnn . . . Hi Galen, Sharon, Katrina, et all,

My name's John - and I'm a Narcoleptic, THERE . . . I've said it.
Now, everyone say . . . "HI JOHN" . . . Thanks, I needed that!! . . . . lol

I live in N.E. Georgia . . . Yep! up in dem dar hills. Where tax is high as miniskirts and the men . . . 'bout 2 feet tall.

I'm 54, a disabled Engineer. Diagnosed in 1995 after many years of denial, mis-diagnoses, lost career, failed marriage, family ridicule, etc, etc.

I hope you don't get discouraged by our lack of attention but after all . . . . we ARE Narco's, (I don't like the acroynm "Narc" . . . <g

I don't write much . . . I'm more of a "lurker" but thought I'd jump in and say "Hello".

Now, if you'll excuse me, I'll finish my nap . . . . This is ME

Huggers, shakes to all.

John, (sleepy in Georgia)

nancy valencia <nanzz-@...
Thanks a million, Nancy Valencia! Let's see.......where to begin.
I was diagnosed with narcolepsy 3 Feb. 99. I figure I've had it since
1993.
I was in the army from 92-95. I started having problems with my sleep
in 1993.
I went to the clinic to see why I was so tired all the time and why my
sleep
was disruptive and not restful. The doctor at the clinic asked me a
few questions, one of which was "Do you have any dreams?". I said
"yes". Because of that answer he sent me to mental health. There the
psych-person asked me questions about my dreams. It just so happens my
dreams were about Desert Storm in 1990-91 and Somalia in 1992. To me
the dreams were not disturbing but actually interesting. My
psych-person was a Desert Storm Vet too. All he wanted to talk about
was my experiences. After a few months I quit seeing him. Other
physical problems ended up taking all of my effort and time until my
discharge. around the time I was discharged I started , what I now
Know as, cataplexy attacks. They weren't that extreme or long so I
didn't know what to think. To make this long story short....from my
discharge date to 3 Feb. 99, my sleep problem got alot worse. The VA
sent me to mental health too, after alot of different tests that were
negative . The psych-person at mental health wanted to rule out
narcolepsy. BINGO! Didn't rule it out, it found what was wrong with
me.
I now realize that I have cataplexy, EDS, hypnagogic hallucinations,
sleep paralysis, automatic behavior, disrupted nighttime sleep, bruxism
and periodic limb movement syndrome.
Most of my friends don't have a clue what is wrong with me, don't want
to know and don't really care. All they have seen and heard from me is
my head hitting a desk or laugh at me while I come out of a "quick nap"
and not know what is going on. Only a few people understand to a
point. No one understand totally. I've figured out that only a person
that has or deals with my symptoms on daily basis really understands
what this stuff is all about.
I have questions to ask but I got to go. I'll be back later t-nite and
ask some questions, if that's OK.
Shawn Albaugh

Hi, Lorrie and welcome to the club. Are you an sci? Or is your boyfriend?
That's a great pic on your profile page. Hope you enjoy your visits to the
club.<br

Thanks for the wake up call on that one
Sharron

Hi, As a member of eGroups I wanted to share the below information with
all members of the support group. If you feel it is not proper material
to post, I will understand.
Jean Tooher an eGroup member
You may think your computer is Y2K complient, but it probably is'nt.
This simple exercise will ensure that you will not crash come 1-1-00.
It's an easy fix and only takes a minute. Here it is.
Click on "Start"
Click on "Settings"
Double click on "Control Panel"
Double click on "Regional Settings" ocpm (look for the little world
globe), not the date and time icon.
Click on the "Date" tab at the top of the page. (Last tab on the top
right)
Where it says, "Short Date Sample", look and see if it shows a "Two
digit" year format ("YY"). Unless you've previously canged it, (and you
probably haven't), it will be set incorrectly with just two Y's. It
needs to be four!
That's because Microsoft made the 2 digits setting the default setting
for Windows 95, Windows 98 and NT.
This date format selected is the date that Windows feeds "All"
application software and will not rollover into the year 2000. It will
roll over to the year 00.
Click on the button across from "Short date Style" and select the option
that shows, "mm/dd/yyyy" or "m/d/yyyy". (Be sure your selection has
four y's showing, not just "mm/dd/yy".
Then click on "OK" at the bottom.
Easy enough to fix. However, every "as distributed" installation of
Windows worldwide is defaulted to fail Y2K rollover.
Pass this along to your PC buddies. No matter how much of a guru they
think they are, this might be a welcome bit of information.

Hey, lots of new members while I was away... maybe I should stay away...lol<br
special welcome to my special friend, Button. Glad to see you! (How's Bobby???
Or do I need to ask? lol )<br

Welcome to all the new members that
joined!!<br
Post some info on yourselves so we all can get to know
one another ok?? thank you very much....again as i
always say....If you have any questions please feel free
to write to me or post them..and ray and I will try
to help you out in anyway that we can. Thank you
again for joining!<br

Hi and WELCOME!!!!!

bridgette, hi there !! thanks for joining!! i'm so glad you did...i will talk to
you soon ok?<br

Angel, I don't think you could offend anyone if
you tried!! You are a beautiful person. I'm still
formulating my response to your question. Have had to deal
with a couple of other issues lately and it's
interrupted some of my plans, but I promise to get to it
soon. As for the chats, I live west, so after 9pm mst
works for me; but that makes it late for people in YOUR
part of the country. We might have to look at earlier
times during the week and maybe later times on
weekends, do you think? Subjects? I like the ideas I've
seen in other clubs such as having certain subjects on
certain nights. For example, the subject could be
'disability and sexuality' on one night, 'sci's in the
workplace' on another night, perhaps a night devoted to
s/o's of sci's, a night just for the kids (either kids
with sci or kids of an sci parent)... this one could
be very valuable... I think the kids are so
vulnerable and have such fears about losing a parent, or
about losing out on a part of life because of their
disability, it might be good if they could come in and talk
about their fears, how their sci peers deal with the
chair life, etc. etc...<br
now gotta run, time for work.<br

Hi Coralie, I too developed rosacea shortly after the birth of my son
in 2000. The hormones must have something to do with it. I recently
went to the beach and my face cleared up completely. I didn't go
swimming so it must have been the sun for me. I quit taking the mino-
tabs and also quit using Noritate because it seemed to do more harm
than good. I've been using pure vit-e gel on my face along with a
mild moisturizer. I can't use any kind of soap or cleanser at all
without drying my face out completely. After reading the poll on non-
rx solutiions I think I will try flaxseed oil. It's so good for you
that it must be good for your face too!
Angi

giving birth to my second child 2 years ago. I have been on Doxy
since but stopped taking it after doing some research on it, after
that i was put on Mino-tabs which did nothing. However while on
holiday at the beach about 4 months ago i was swimming everyday day
at the beach and my face looked the best it had been for the whole 2
years I believe the salt water had a medicinal effect, since then i
have stopped taking any pills or applying any creams i just use a
cleanser for my face and it seems to work well as long as i keep up
the beach visits. I do still get breakouts which usually occur around
my monthly cycle which i can live with because im not stressing over
doctors visits, Prescriptions or the expectations i had with all the
medicines. Look forward to hearing some feed back.

Hello Albaugh in the far north plains of North Dakota,
Sleepers Wake! A Voice is Sounding!

Welcome! Come on in and make yourself comfy. You found the right place.
None of us bite, well, uh, none that I know of anyway. Around here we yawn a
bit and nod off at will, but basically we are here to provide support and
understanding which is only available from persons with narcolepsy. Ask
your questions! With more than thirty years experience as a practicing
narcoleptic, if I can't answer your questions, I'll find someone who can.
Although I speak for myself, I believe that other sleepy headed subscribers
will also be responsive to you. <Hey! Somebody put on a pot 'o
coffee!
Nancy Valencia

I would like to start chatting in this club...but
need to know what times are good for everyone...please
post what will work for you all..then what you would
like to chat about...i will then make it my business
to try and set things up ok??..i really want to do
this..so please respond.. thanks . and i thought i would
get more postings about the question that i
asked..how has your life changed being w/ or knowing a
handicap person?? i would have liked to see everyones
responses...or if you are handicap...how is life going for you
now?? are you happier or not?? please respond...im
trying to get things going in here but also new to this
wonderful world of knowing handicap persons!! if i have
offended you , please let me know!! i'm trying to be
attenitive to everyones feelings..<br
to everyone in here..if you have any
questions..please feel free to ask ok??<br

albaug-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=103
These three messages should only be on one. I have narcolepsy and I'm
trying to find someone who actually knows what I am talking about.

Does anyone have any good experience with any dermatologists in the
Chicago area? I see only one listed in the database. My internist is
reluctant to refer me, because she says they won't do anything more
for me that she is doing (prescribing metrogel and tetracycline). And
my previous experience with dermatologists (for other issues) doesn't
leave me with much confidence either.
I'm not sure metrogel is doing anything. But I'm afraid if I stop, it
will get worse. Tetracycline does seem to reduce the redness. Nothing
dramatic, but some improvement. And I also use an aloe gel. And that
seems to help.

hi again angela and ray my last houseon LI wasin seaford for 6 years. before
that i lived in shirley for 18 years. my kids both married still live in
shirley.

albaug-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=102
to call it that well. I could use a little help with this too.

galen-barr-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=76
to me. I havn't done much of this computer stuff before.
I would like to ask some questions about N to someone who knows,
understands and lives with it. Can you help?

Hi, Kerena, how ya doin????

Thank you, I'll look into this.

Peter,
It is too soon for me to know yet, but I was put on Alertec yesterday and I
can't believe how alert I am!! It is like (not being high) but being able
to be more productive and thinking clearly for longer periods. I got up
this morning, took my medication and it has already been 3.5 hrours and I
have not felt any desire for a nap. Oh my gosh!!! I can't believe this. I
hope there is no tolerance built up.
bye for now
Sharon

I purchased ti-silk at skin care rx.com, it's ti-silk sheer.
It's SPF 45 ... made by procyte corp. It's fragrance free, paba free,
non-comedogenic. I like it a lot cause it's not heavy and it's good to my
skin.
Elena

Hello Kerrie from a fellow Aussie
just thought id send a quick msg to let you know im around im from Adelaide
and have been diagnosed this year with narcolepsy im 39 my name is Peter
would love to chat with everyone again soon but for now im very tired and
have to go to bed so i can get up tomorrow and go to work will reply to
everyone this week as soon as i can sorry for not doing so earlier but you
all know how it is anyway take care all and will chat soon thanks
Peter who is very tired and going to bed

I Had a great talk with you last night thanks a bunch!!! love angela :)

To Kerry Haywood and others with interest,
My experience with Provigil hasn't been entirely satisfactory as far as I'm
concerned. I have been taking GHB for about three years, and the combination
of GHB and Desoxyn( a methamphetamine) had almost completely controlled my
Cataplexy which had advanced to a high state of severity. When I started the
Provigil, my neurologist had me slowly cut down on the Desoxyn until finally I
eliminated it altogether. Even after prolong efforts, this just didn't work.
I have cut back to 20 mg of Desoxyn per day, along with 400 mg of Provigil-but
eliminating the Desoxyn altogether just doesn't do it for me. I still have
some sleep attacks, but at least the Cataplexy is under control. Of course,
the thinking is that Provigil isn't as hard on the cardiovascular system as the
amphetamines which can contribute to high blood pressure.

It is good to know you Kerry. I still don't know what that drug is. I have
just had a drug called Modafanil (alerteck) ordered. It is just new here in
Canada. In the States it has been out for awhile. Anyone on it? How is
it?
Sharron

Hi there,
thanks sthpawcats for all those web addresses, I'll be
checking them all out for info. My name is Kerry and
I'm an Aussie, I remember someone out there was
looking for other Australians online with N.
I'm 29 and I've been diagnosed for about two years
now, but I had the condition for a couple of years
before that, before anyone knew what was going on. As
usual.
Anyway, I love hearing from all of you on the list as
I'm pretty starved for information here in Fremantle.
I usually tell my doctors about new drugs and
breakthroughs, so all the info shared online is
something I'm grateful for.
I was interested to hear that some people have an
opposite reaction to dexadrine, because I am on dexy's
and I could have sworn sometimes I feel more tired
after taking them than before, and I can't fight off
sleep, I zonk out for about half an hour and then wake
up pretty perky. I thought it was just my
imagination, but that makes it seem as though it might
be a possibility. I always had a severe sleep
reaction to all the antihistamine type drugs too, they
knock me for a loop, even in tiny tiny doses.
I am waiting for provigil to be released here in Oz,
so it's great to hear that it seems to be working for
all of you that take it.
Kerry in Oz
=====
"Earth...this is God, I need you people out in 30 days,
I've got a client interested in the property."

welcome ralph, thank you for telling us alittle
about yourself.... i didnt know you lived in long
island?? i use to many yrs ago... but i still go out there
as often as i can...where abouts did you live? i
lived in suffolk and nassau countys. we have to talk
alittle more ok?? thanks again for joining my club and if
you have any questions feel free to i-m me or ray he
is my co-founder or my assist,,lol sorry ray! he's a
great guy to talk to. talk to you soon,<br
ray

I personally use a SPF 50 gel cause I don't like an oily sunblock. The
brand name is Bullfrog.
There are a few physicians in the NYC/NJ area listed in the physician
database......
for instructions to see the dermatologist/physician list
or to add a name to the list go to:

Thank you for the websites. They look like they would be very interesting. I am interested in most of them myself.

Sharron

My name is Ralph Iacono. I am c5/t2 incomplete
para. Spinal cord tumor removed june 20 1995.<br
relocated to Cape Coral , florida from Long Island 2+ years
ago. Spasms reduced no cold weather. I spend my time
swimming, exercises,and now in the last 3 weeks my new toy
the puter. I am very new at posting so don't laugh
too loud.<br

Please let everyone here know alittle about your self..we would love to hear
from you.<br

What is Adderall?

Dont forget to read and post your messages for this posting I wrote..thanks a
bunch.<br

I have been wanting to write the group for days, and my life and body didnt allow----anyway here are some URLs to some sites some of you may find helpful.

http://www.rls.org/index.htm
http://www2.stanfor d.edu/~dement/rls.html
Restless Legs Syndrome

http://www2.stanford.edu/~dement/index.html
http://www.stanford. edu/~dement/sleeplinks.html
Sleep Links

http://www.sunflower.o rg/~cfsdays/fmsfiles.htm
Fibroyalgia, however many other good pages for coping with chronic disorders, doctors etc.

I hope some of this is helpful. Total I have about 14 disorders, alot of them are thought to be connected or secondary to Narcolepsy and / or Fibromyalgia....Many years ago my doctors discussed the possibility that the Fibro was caused by the N. and the Crohn's because of the Fibro....etc...etc....

I wish I had more time to share my ideas and thoughts, so will be brief. I have been on Ritalin for 20+ years and both of my parents have had high blood pressure. Even now with the constant physical pain, diabetes, and even panic attacks I have a very normal blood pressure. Before all the other disorders I usually even ran on the low end of normal.......it also isnt necessarily the cause of headache. I have had all kinds of headaches including the migraine. It is more connected to the Fibromyalgia, and TMJ. Now if I overdo it and stay awake too long, yes that can create a headache.

I also have the RLS, PLMD, and sleep apena. I attended a support group locally for some time. I also have several friends that have RLS. Two things that everyone with RLS will say "IRRITATING" and "Have to move your legs!"From a doctor that spoke to our group said there can be many different reasons a person gets RLS, {such as a friend of mine did from an injury--BTW he has it on the right side leg and arm} Some people call it crawly jittery, I always explained it as leg cramps way inside with an electric current. However a person develops it, the main thing is HO

Hi Phil,
I guess there really is comfort in numbers. It is true that I seem to have
become tolerant of the Ritalin. I am going to talk to my sleep doc though
and just tell him everything. I too will be 49 in a few weeks...just
curious...what day? My husband is 7 years older than me and he thinks 49 is
young!!!
That crawly feeling in you legs is one of the symptoms I read about for
restless leg. I don't get that. I just get really hard jerks when I am
sleeping or trying to fall asleep. Once I nearly bit my tongue in half.
(well not really in half). I have seven more years to work. I will be glad
to go on a pension so I can work when I wish and not on a schedule. I am
sure a lot of people think that way.
bye for now
Sharron

A poll is being taken in the rosaceans group on the question:
How do you treat your rosacea?
Prescription Medications
Non-Prescription Medications - Topicals or pills
IPL Therapy
Accupuncture
Herbal Treatments
Rosacea Diet or other diet
Vitamins
Laser Therapy
Cosmetics
Non Prescription Soap
To vote on this poll question go to this url and cast your vote or see the
results:

This is my interpitation of my life with a
handicap person..I was married to a self-absorbed
man..work was all he knew. We rarely had a goodtime out
together. <br
friends with a little girl,they got very close.<br
day she wanted to go over to her house,and there I
met her father,who was injured 3 yrs previous to our
meeting. He is a very kind and giving man who loved his
children very much! The more I spoke to him the more
amazed I was. This man did so much, mowed his lawn, he
helped his children with their homework, and may i say,
cooks some mean tasting dinners!! As the days went on
the more I wanted to be around him, His smile always
brighten the room up! I must say this,as I hung out with
him the wheelchair disappeared...He has this way of
making you live life again... When I would go home, I
dreaded being with my husband, He never had a nice thing
to say to make me feel happy, but everytime I seen
this wonderful man, he always told me I look good
today or he would tell me a joke or too. Which really
made me feel alive! And everytime i left, he always
told me to smile!! That I looked very sad when I
didnt... He knew that I wasnt happy and he always tried to
make me feel good about myself.. Well the years went
on and i was going thru my divorce, Here was this
wonderful man standing next to me....( see i did it again,
this is what im talking about! ) Supporting me thru my
toughest hours.. Well now this man is in the middle of his
divorce..and I'm standing there right beside him.... With
nothing but total love for him. When we go out together,
i see things all over again!! Like I was born
again!! The chair does not bother me one bit!!!! I rather
love it!! lol But you know, its not the chair, but the
wonderful person whom sits in it!! Thats what i see!!! A
very tender, loving man a giving man. not for himself,
but to others! That gives him great pleasure to do
that for people he cares about!! He never is greedy.
He is the man I always dreamed about!!! Strong but
tender, funny but serious too. And what I really love
about him is his childlike qualities.. Always wanting
to get out of life what he can!! So we have been
with each other for quite sometime now, and I still
feel like a kid!! He makes my life and heart so
happy... I dont ever want to be away from him ever!! You
may think this is very weird to say, but he completes
me!!! This is how my life changed knowing and being
with a handicap person....And it changed for the
better!!! I can't ever see my life without him!! I wouldn't
change it for the world!!!<br
same happiness that we do!! Love to all,<br

Hi everyone

My name is Coralie and i am 26 i developed rosacea shortly after giving birth to my second child 2 years ago. I have been on Doxy since but stopped taking it after doing some research on it, after that i was put on Mino-tabs which did nothing. However while on holiday at the beach about 4 months ago i was swimming everyday day at the beach and my face looked the best it had been for the whole 2 years I believe the salt water had a medicinal effect, since then i have stopped taking any pills or applying any creams i just use a cleanser for my face and it seems to work well as long as i keep up the beach visits. I do still get breakouts which usually occur around my monthly cycle which i can live with because im not stressing over doctors visits, Prescriptions or the expectations i had with all the medicines. Look forward to hearing some feed back.

Thanks Coralie

Society seems to becoming increasingly intolerant of sleeping disorders.
In the past week, there has been talk of a manslaughter prosecution for
a truck driver fell asleep and caused several deaths. I heard callers
on a radio program say he ought to get the death penalty.
I am aware of one person who lost a job because of dosing off at a
meeting, and had no recourse -- it was considered a "competence" issue.
Trends do not bode well for sufferers of sleeping disorders. There could
be nightmares ahead for narcoleptics.
--
-lsm

Hi.
I thought I'd throw my two cents worth in...
Almost everything you described Sharon, I too have also experienced.
Actually, having visited many of the Narcoplepsy sites (including many
of the research centers), these symptoms seem pretty normal. As for
the Ritalin, it is generally accepted that it causes an increase in
blood pressure. Some generalist MD's and some in Internal Medicine
would say otherwise, but every neurologist that I've met states that it
does. My blood pressure used to be very low for my age (sometimes too
low). Since I started on Ritalin about 3 years ago, it now stays at the
high end for my age group. (I'll be 49 in a few weeks). I am still in
the military (active reserves)and trying to finish out my time for a
pension. As soon as I was placed on Ritalin, I was dropped from having
to do my 2-mile runs for PT (Medics fear of high blood-pressure caused
by the Ritalin). As for the headaches, they can be caused by many
things, including the Ritalin. However, headaches are a common
occurance caused by withdrawls from Ritalin. It seems that many (like
myself) build up a tolerance to Ritalin fairly quickly and it has less
and less effect. If I go for more than about 4 hours without taking
another Ritalin tablet, I start getting a severe headache with short
bouts of N. I then take another Ritalin and in about 15 minutes the
headache is gone and I'm fine (generally) for about another 4 hours.
Currently, Ritalin only works at about 50% for me. If I were to stop
taking it for about 1 to 2 months and then restarted, I would be back
up to about 90% efficiency (for a short while). Everything has it's
price. I can't take amphetamines (I have a reverse reaction). If I
take 20mg of Dexidrine, I'll be asleep withing 10 to 15 minutes. Oh,
well! I also can't take tricyclics for Cataplexy. They tried three on
me and all caused enlargement of the prostate gland. Currentlly, I am
taking 20mg of Prozac once each morning, and it seems to control the
cataplexy quite well until the evening. I, like many others, seem to
have multiple related sleep problems. I also have apnea, and I also
have restless leg syndrome. The "restless-leg" their not real sure
about. My legs and arms have always been very restless and may be
related to my having had Polio when I was 4 years old. I was one of
the lucky ones that wasn't crippled, but my legs and arms have to move
all the time to keep them fromm getting a crawling sensation through
them. If they stay stationary for too long, they may jerk or twitch.
Enough for now. Each person has to find what works for them. As in
life, each must walk their own path. I only pray that God sheds a
little light on each of our paths to make the way a little easier.
I would also sincerely appreciate any info from anyone that has had a
military or VA claim related to Narcolepsy or any other Sleep Disorder.
Thanks,
Phil

Welcome eric,,,im so glad you can join us!!
please tell us alittle about yourself..how you found us
and how you became injured!! we all would love to get
to know you better. please if you have any
questions. post them or e-mail me or ray...we will try to
help out anyway we can..<br
aboard...<br

Hi everyone
I'm Penny and 42 yrs old with a long time history of Rosacea for 7
yrs. I am taking Noritate Cream at nite. One year ago I stopped
taking Tetracycline because it was causing reactions to internal
problems. I also have severe rhinitis allergy and sinus problems but
am taking Zyrtec and Beconase for it which does help some. Look
forward to hear from you. Thanks.
Penny

Nancy,

Thank you. I am seeing my sleep doctor on Thursday. Nothing I can do tomorrow with Thanksgiving but I have a blood pressure cuff and I will monitor. I will go to emerg if it goes up too high. I take medication for the BP and it seems to keep me at a reasonable level...but I will take what you said seriously and get back to you..thank you for caring.

Sharron

Debi:
there is a lot of information on my site which might be of interest to
you that categorizes the treatment for rosacea into some logical
subjects on the sister site....
http://www.rosaceans.com
Brady Barrows

I have a question to ask and would like anyone's
response... How has your life improved since you known or are
involved with a paralized person?<br
answer this question.....Many people who are involved
with or are friends of a handicap person would want to
know from experienced people.. <br
your experiences with us all!<br
angela

That was very interesting. Thank you. I will look into it.
Sharron

Hi, Steve..... welcome<br
message.<br

I'm so glad you joined my club....what is it that
you need to know? I will try my best to answer any
questions that you have. please feel free to i-m me or ray
he is the co-founder of the club..<br
answer your questions I will try to get someone who can
ok?<br

Hello Sharron and other fellow sleepy heads,

In a previous post you stated that you had high blood pressure. In this post you complain of headaches and momentary loss of memory in addition to that other feeling. It is likely that the headaches are caused by the high blood pressure. Ritalin has been known to cause high blood pressure. Ritalin and high blood are not mixable. You must seek immediate medical attention. High blood pressure, regardless of the cause, is a killer. Headaches are pain; pains are indicators that something is wrong and needs attention. In your case, you must call your doc first thing in the morning. Don't put it off! You may have already suffered a mini stroke (called a TIA--trans ischemic attack) when a small vessel in the brain broke. Please, Sharron, call the doc. If you have a spell before you can get to the doc, go to the emergency room.

Ritalin may not be the best kind of medication for you. Provigil is the brand name for modafinal. In your case it might be best that you switch to it since it is not as strong as Ritalin and acts on another part of the brain. Always use your c-pap machine--even for naps. Sleep apnea may have set you up in your current situation. It is a life-threatening disorder as I'm sure you are aware. I'm sounding the alarm!

A couple of weeks ago, I visited with my mother. She's nearly 85 but for the most part is lucid. However, I observed that she was having little spells like yours. Since I live 250 miles from her, I informed my sister who lives near Mom that I thought Mom was getting ready for a stroke. Mom is now in the hospital because her blood pressure was sky high. Medical tests revealed she had already had several TIAs and was indeed headed for a stroke because of uncontrolled high blood pressure. I'm glad to report that she's doing better and the blood pressure is coming down. I want Mom AND YOU, SHARRON, to be around for a while longer! GET MEDICAL ATTENTION, then keep us informed.

Nancy Valencia

Hello everyone,
I am new to the group, but I think I have had this condition for the
better part of 2 years now. It has only been in the past 6 months
that it got so bad I finally went to the dermatologist. Up until
about 3 months ago, it mostly just redness and itching around my
eyebrows and cheeks. I did NOT have a clue that a severe, 3 month
long bout last winter with styes in both eyes was Rosacea, but that
was what happened. I guess I should be kicked for not going in to
have it seen about sooner.
Right now, I have been on tetracycline for about 2 weeks, and washing
my face 2x day with "Oil of Olay" sensitive skin foaming face wash,
and the derm changed my moisturizer to "Cetaphil" with 15 SP. Even
tho I have oily skin, the dryness of the rosacea patches made my old
moisturizer a problem, and so far, I have seen things starting to
clear up, and the itching, burning and redness have calmed somewhat.
Being kind of picky about moisturizers and make-ups, I was reluctant
to try it, but I am real pleased with it so far.
I am currently reading a book about pre-menopause by Dr. John Lee,
and he is of the opinion that some (many?) cases of Rosacea,
especially in women, are symptoms of a hormone imbalance. He says
that there are many conditions like this (thyroid conditions, and
other seemingly isolated illnesses) that are a result of such an
imbalance, and that once you get you hormones under control and
balanced, many times these other illnesses and conditions will come
under control as well.
I was just wondering how many women in premenopause have this
condition, and if starting some kind of hormone therapy has had any
effect on your rosacea?
Also, I know I have more flare-ups when I get upset, stressed out and
angry, and since I am rather "Type A" personality and kind of high-
strung, does anyone have any suggestions for getting better control
of your emotions? Someone suggested yoga, but I am not sure I am
ready to try that yet.
As well, I am also wondering what I can do for the ocular Rosacea,
besides the antibiotics? Eyedrops, or a separate visit to an
opthamologist? My derm didn't seem to have the time to go into that
part of the condition.
Thanks for your help...glad to be here.
Debi

Hi gang, I really enjoyed your "has everyone dozed off". I am a fellow
sufferer. My problem began age 14, falling asleep inappropriately,
cataplexy etc. Diagnosed at sleep lab as narcolepsy and sleep apnea.
In reading from you members I seem to see that you are using a pill or
potion as a remedy to control an internal problem with your nervous
system. You are taking some type of stimulant which is not doing
anything but whipping a tired horse.
The basic problem with all of us who have narcolepsy is that we are
unable to get a restful nights sleep. We immediately go into REM sleep
and stay there all night.
If you were to ask a normal person how they felt, if they were so
worried or concerned that they were unable to sleep, they would reply
that they felt like a narcoleptic feels all the time. To take a pill
to keep awake would be good as a short term answer, but as a long term
answer, it can only be detremental to ones health.
I am a little hesitant to write the following, but because someone may
benefit I offer it to you. It is not my intention to advertize or even
to suggest that you try chiropractic. The following is how I have been
helped.
I am a chiropractor. When I was about 25 years old I received an
adjustment to correct my crooked upper neck. Since that time I have
been much better. For 15 years I could not laugh out loud and sudden
emotion caused me to freeze (cataplexy). I have had a very successful
40 year career in my profession which is quite a high stress job.
The relationship between my neck alignment and narcolepsy symptoms is
directly related. It appears that the stretching/compression of my
brain stem from the misaligned neck is causing most of my symptoms.
As long as my neck is aligned, I can laugh out loud, have almost normal
energy and function almost normally. Cataplexy is totally gone. I
still have N. but only slightly.
The type of chiropractic care which helped me - the normal manipulative
type did not - is taught by the National Upper Cervical Chiropractic
Association (NUCCA). What is the difference between NUCCA and regular
chiropactic? The NUCCA approach is to physically align the head, and
neck to the three planes of motion ie align to plumb and square.
NUCCA has a website (nucca.org), if you wish to investigate further. I
would be happy to tell you more if you wish to contact me.
My life has been dramatically changed for the better by this treatment
and I do not wish to think of where I would be without it.
Dwain.

hi phoebe,<br
i've seen that site! its really great!!!! i hope your
doing well. sorry i havent been on i have been painting
my little heart out....dont think i can do anymore!!
my body hurts all over..but anyway i have to go and
finish up. carpet guys are coming tomorrow and wed. plus
new furniture on thurs.<br

Hi there,
a moisturizer has been the most difficult for me because I have dryness too.
Believe it or not, what I am using now is pure mineral oil mixed with
purified water.
Good luck,
Elena

Hi All<br
to. Some great information for everyone.<br
href=http://www.sourcehealth.com/gathering/sex/
target=new

Can anyone recommend a moisterizer for extremely sensitive and dry
skin?

What is provigil? Is that the Modafinil my doc is thinking about putting me
on?

Hi, brvhart,<br
you've chosen. What is the meaning of it? The movie
"Braveheart" is one of my alltime favorites and I wonder if
your life somehow mirrors the movie. Or is there no
connection at all?? Welcome to the club, hope you enjoy your
time here.<br

I wish your message didn't sound so much like spam

Welcome to the club brvhart...!!! this is
wonderful!! thank you for joining! please tell a little about
yourself to the club.so we can all get to know you. if you
need to ask any questions, please feel free to ask ray
(my co-founder ) or my self. again thank you for
joining!<br

Yes, I too have various things wrong. I just was fearful of admitting it to the group. I am not sure why.

Apnea (I use a cpap)

Narcolepsy

Type two Diabetes

RLS

Hypertension

High blood pressure and cholesterol

That's about it

Sharron

great, so after 6 months its back to square 1??? =(

Welcome cookie and thank you for joining my club
if you have any question or would just like to chat,
please feel free to im me or ray he is my co-founder.and
a great man too!!!! please tell the club alittle
bit about yourself. so everyone can get to know you!
thank you again!<br

Nancy,
Thank you for your e-mail. PLEASE everyone, listen to what is going on
with me and tell me if I am losing it. I don't know if this is because of
the narcolepsy or not.
I am tired all of the time...go figure...
I forget words right in the middle of sentences!
I sometimes (often ) have a sense of not being present "in the now"
Sometimes I get quite sad
I get headaches from the Ritalin I take...at least I think that is why
Sometimes the Ritalin works and sometimes it doesn't..I never get a high
from it but when it works it is like I am "normal"
How about everyone else? Are you like this?
Sharron

If you only take Doxy for 2 months (which is how its recommended actually... to be used for 2-3months) then you probably wont have to taper off. if you do, you can probably taper off over a period of a few days and that will be it. many of the people on here who talk about the terrible side effects of antibiotics and tapering off etc (myself included) were placed on antibiotics for years, without being aware of the side effects/complications until it was too late. Taking an antibiotic for 2-3months for Rosacea is actually quite safe. Keep in mind though, that there is a large change that your Rosacea will return when you finish the Doxycycline (assuming the doxycycline has made it go away). I think its 25% of people who go off antibiotics have their symptoms return in a month, and 75% have them return after 6 months. But this is MUCH better than the alternative... cuz if you stay on antibiotics for a long time, you will basically be screwed.

Adam

i would like to say that when ever your viewing
the room just jump into the chat area and use it when
ever you feel like it..more people will come to use it
too!! please do that..im always checking in so i will
jump on in too!! thanks<br

Nancy your post was TOO FUNNY!
Almost found myself in the floor!
I have several disorders and one of the things that keeps me going is HUMOR. Thanks for the laugh!

since I am here posting.......does anyone else have multiple medical disorders? Other sleep disorders?

I have been told that I probably have a severe case of N. and my mom sees the N. back in my young childhood. Among the medical disorders I have several sleep disorders: Sleep Apena, PLMD {periodic limb movement disorder} RLS {restless leg syndrome} and Fibromyalgia --not a sleep disorder however it effects the Stage 4 sleep.
Katrina

First, apologies for my ID name - didn't know it would be used in
messages!
I'm on my first 2-mo. round of Doxycycline and Metrogel and have to
go back to derm for follow-up soon. Question: Does one routinely
taper off the antibiotics like you have to taper off
corticosteroids? Trying to anticipate my dr visit. I know from
other messages, some of you really don't want to be on the
antibiotics and, of course, I'd like to be off them sooner than
later. If this is really a long-term thing, do the antibiotics
really help or is it lifestyle changes, The Diet, etc., etc.
[I know you guys aren't doctors; I'm not seeking medical advice just
conversation!!!] Thanks.
PL

egroupers? I was the last one to join
prior to this one? I would like to
of you. Let's get some action going,
Dozin' off?<yawn
dozin'?<yawn
uh...<sigh
answer..now
what I wasa gonna
talkin' 'bout anyway?
Sound familiar? When my
in the late sixties, I denied
conversations. While coming to terms with my
to live with it, I didn't hesitate to tell everyone
years, when friends and family members called and caught me
asleep during conversation, I continued to deny it. Because I
myself in being honest, I didn't understand why I continued to
deny--to lie--that I had momentarily dozed off. In recent years, I
simply
conversation. I was
fallen asleep during
conclusion that sleeping at
ingrained in the human psychic that it
course, a defense mechanism.
have created some food for thought,
fat 'n feisty. I live in Columbia,
narcolepsy was diagnosed in 1969 when I was
work, but I don't. I took my disabilit

Kicking the habit is tough. I tried, made it my
new years resolution. I lasted two weeks but decided
giving up smoking and going on a diet is a bad combo so
started smoking again. The diet fell by the wayside the
following week. :)

Today my Dr. prescribed a topical medication, Clindamycin Phosphate,
as we felt I was building up a tolerance to Metrogel and minocycline
for my rosecea. He also gave my erythromycin. When I got home, I
was concerned immediately as I read the label and noticed it
contained alcohol. I had thought I had always read to stay clear of
anything with alcohol. Has anyone heard of this as a prescribed
medication? I have not seen it anywhere on any of the prescribed
lists of topical medications for rosecea. Can anyone help me with
this question? Thank you for your time.

Huh? Who? Me? Dozin' off?<yawn
I wasa dozin'?<yawn
uh...<sigh
you've gone 'n interrupted my train of thought 'n I fergot what I wasa gonna
say. See how you are!<sigh
LOL! Does that remind you of anyone you know? Sound familiar? When my
symptoms became fully blown and troublesome in the late sixties, I denied
falling asleep during phone conversations. While coming to terms with my
narcolepsy and learning to live with it, I didn't hesitate to tell everyone
about it. For years, when friends and family members called and caught me
falling asleep during conversation, I continued to deny it. Because I
pride myself in being honest, I didn't understand why I continued to
deny--to lie--that I had momentarily dozed off. In recent years, I simply
admit that I've been caught napping and get on with the conversation. I was
puzzled about why I continued to deny that I had fallen asleep during
conversation for so many years. I've come to the conclusion that sleeping at
inappropriate times is a negative so ingrained in the human psychic that it
surfaces as denial which is, of course, a defense mechanism.
Now that I've spouted off, and I hope I have created some food for thought,
I'll introduce myself. At 53, I'm fat 'n feisty. I live in Columbia,
Missouri. I'm an Ozark narc! My narcolepsy was diagnosed in 1969 when I was
23; my medication still work, but I don't. I took my disability last year
and I'm glad I did because it gives me the chance to continuing the real
work of my life--reaching out to my fellow narcoleptics.
I was out of town for the last chat room. Is the chat room still on? I
would appreciate details. How many of us are there on e-group list? Y'all,
be in touch.
Nancy Valencia
PS. I'm divorced but, kept my marriage name just to irritate my ex
father-in-law who never did like me. It is a Spanish surname. I often say
that my name is Valencia--like the orange. I'm the sweet Valencia--I left
the sour one in Kansas years ago!

Hi Galen
Tell me about yourself. Yes, probably we are all sleeping...darn problem
for me! I work full time and when I get home it means a 2 hour nap and then
getting up to do my "chores"
Hope to hear from you
Sharron

Hi Angela,<br
demon weed. Hope you soon get past the graving period, and start to reap the
benefits<br

Where are all of you narcoleptic egroupers? I was the last one to join
and posted the last message prior to this one? I would like to
correspond with some, if not all of you. Let's get some action going,
huh?

Hey, Angel, I think setting up chat times would
be great. We don't do enough of that here. I'm sorry
you're going thru the tough times with the withdrawals,
but please hang in there. When you get through it and
come out the other side, you will be sooooo glad you
did! Regarding your troublesome email, I will answer
it shortly, when I am rested. I would like to be
able to help you for a change; you've been such a big,
big help to me on so many occasions!! Wow, finally I
get to be on the giving end instead of always
receiving from others... I'll be in touch within a few
hours. Why don't you drop Phoebe a note and see if she
has any ideas or thoughts about your concerns too?
Talk to you soon...r

galen-barr-@... wrote:
original article:http://www.egroups.com/group/narcolepsy/?start=66
remember correctly. Is that 8:30 P.M. EST/CDT/MDT/WDT? I wasn't
available last night but would like to join you if you will clarify
which time zone your 8:30P.M. was predicated upon.
I am a new member of the group, by the way. I am 60 years old, live in
Denver Colorado. I was diagnosed about 20 years ago after having had
problems for for at least 20 years. Hope to get acquainted with all of
you soon.
Thank You, Galen

Hi Amy
I won't argue your definitions because I don't have any really. I don't
know if I have cataplexy but I do know that sometimes my legs feel rubbery
and I am overwhelming tired. Sometimes I bang against things or trip over
things that are obviously there.
I also spend time trying to decide if I will work or fall asleep in my
chair. Yes, walking about and talking to others does help me.
Thank you for your e-mail. It was very descriptive and I could identify
with it.
Sharron

Well Christie
Maybe it is time for me to stop denying it to myself and accept the
diagnosis. What medication do you take and is it any better than the
Ritalin?

awwwwww....blushing now. I think you may be slighty bias though&gt;:)

The following rosaceans poll is now closed. Here are the
final results:
POLL QUESTION: What prescription medication do you currently use
to control your rosacea?
CHOICES AND RESULTS
- Metrogel products, 14 votes, 40.00%
- Antibiotics, 12 votes, 34.29%
- Intensity Pulsed Light Therapy, 1 votes, 2.86%
- Accutane, 0 votes, 0.00%
- other , 8 votes, 22.86%
INDIVIDUAL VOTES
- Metrogel products
- margaretm10@...
- nsprocto@...
- vallin@...
- kimha98052@...
- toby_7377@...
- jp_green@...
- udoknowjac@...
- clairepowers@...
- jennifer@...
- undertow__3@...
- cagammon@...
- dac101@...
- jcollins41@...
- zooeybear@...
- Antibiotics
- nsprocto@...
- designs4me@...
- vallin@...
- kandi59274@...
- jp_green@...
- udoknowjac@...
- khurch@...
- dac101@...
- ursus1951@...
- vberrey@...
- joeysorrentino@...
- jcollins41@...
- Intensity Pulsed Light Therapy
- ursus1951@...
- Accutane
- other
- designs4me@...
- ngendel@...
- graycat4u@...
- emrauback@...
- pamela6_ca@...
- ursus1951@...
- vberrey@...
- zooeybear@...
For more information about this group, please visit

Hey, Phoebe, just saw your new comment and I have to agree wholeheartedly! You
truly are a wonderful person and I'm glad that I have had the good fortune to
make your acquaintance. :o)<br

Welcome back, Angel... missed you. Sorry for the
challenges you have to go thru, but it'll be for the best in
the long run. Really glad to see you gave up the
cig's. I haven't a thing to offer in the way of help or
advice on the hormone stuff, sorry. Tell Jim hi,
ok?<br

sense of balance which causes me to stagger a bit. I have Cataplexy, and
this
will get up and move around, see if I can shake it off...
Thanks for listening,
Amy

sorry,
I supplied the wrong link, here is the correct one:

Sharron, u express symptoms that I went through with my R. My doc actually
had me getting up at 5am and taking 2-20mg time released R then go back to
bed. I usually got up about 30 mins. later like a cannon ball, but way to
often, I woke up groggy and not very functional.
Christie

Just wanted to let everyone know im fine..i
thought i had a bloodclot in my right leg...thank
goodness i dont. but that seriously made me think about my
health..i just quit smoking and took myself off my hormone
replacement therapy pills..which i had been taken for 3 yrs!
im only 40..now im climbing the walls...night
sweats, hot flashes, moody, teary , you name it i have
it!! sounds like a great night of sex... lol i wish.
im going to take natural estrogens. so please if
anyone is doing the same or if their wives did, let me
know! i need all the support i can get..!! i dont like
feeling like this.. its not me. well anyway i just wanted
to let everyone know that things are well, sort of
ok..for now!! im sorry though no one is responding to any
of the messages.. i wish you all try..if you have
anything to ask post it or e-mail me ok? oh and ray too
ok...looking for everyone to get more involved in the
club...and if you all would like to chat please write down
when you could be avialible ok so we can all get
together!! i would like that very much! take care all my
members..... luv angela

Well hello all again from Adelaide , Australia. I have only "officially"
been told I have "SA" & "N" in the March just gone. I had been previously
having trouble only every so often but becoming more prevalent. At first we
thought it was a case of being overly tired, then "burnt out" due to long
hours at work on the road.
However it became to dangerous to continue putting it off, my dr. wanted to
send me to my usual Neurologist whereby I told him NO WAY, I have ended up
someone with a bit more "vision". Anyway she referred me to a sleep study
unit at our local repatriation hospital, however both she and the specialist
at the "SSU" wanted to take my drivers licence off me there and then. I was
(and am)very lucky to have a fiance like I have to make it known as it were,
that to take my licence off me just for the sake of doing it without
investigating the "whys" they would've been better shooting me in a sense.
Anyway sounds a little drastic I know but driving is my life and has been
for over 10 years.........better go now and get an early night as I start at
6 AM(Central Australian Time).
Hope to hear from some of you soon.................

Angel, please keep us informed. And I'll see what I can find out for you on the
chair lift for the stairs.<br

This morning, (saturday) I got up and had one heck of a time waking up and
staying up. I took my ritalin and got up but ended up back in bed sleeping
for another hour. Is this the case for others? What medications do you
take? Do they help?
Sharron

There are so many!!! My husband and I were out at a bar and we were just
sitting and taking in the environment when I saw a table of young people who
were all dressed up and looking very nice. I commented to my husband about
how nice they all looked and then I said, and look there! There is another
table with young people who look really nice. My husband said, "that is a
mirror"
I gues you had to be there.
Another time, we were out, and there was a machine that you put coins in and
pull the handle...you know the ones. Anyway, I looked at it and then the
one beside it and commented to your friends that it was nice of the owners
to put a machine in for left handed people. Again, after they finished
laughing, they told me I was looking in a mirror.
I also read things differently like...(brace yourself) I saw a sign on our
road that said "No horses on bridge" Since my husband drives most of the
time, I just commented that "of course there are no horses on the bridge" I
guess he feels safer when I am in the passenger seat.
Sharron

I tried to vote too but there is no such name to your link.
MM

sorry to all my members...but i have a
problem..medically...i might have a blood clot in my leg, so i might not
be on as much as i would like to...if anyone ever
had this ,please post some info for me for i never
had anything like this...im going to the drs tomorrow
at 12..so i will keep you all posted on whats going
on.<br

In a message dated 05/01/2002 3:50:14 PM Eastern Daylight Time,

Hello to all memembers i was wondering if any of
you know where i can get wheelchair lifts for stairs,
and do they make them for 12 steps?? please post your
answers in the club. i would like to put one in my house.
thanks..angela

Hi Guys and Gals,<br
this surgery with the hope that it will give me the
use of my triceps back. If any of you have any
information, please post it here so that everyone can learn
about this technique.<br

For those of you who need to know where the chat will be held, it is at:
<A
HREF="http://www.egroups.com/ChatPage?listName=narcolepsy"
com/ChatPage?listName=narcolepsy</A

We have 2 more new members here! our club is
growing..thank you everyone for making this club
possible...kacey and andyv please tell everyone a little about
yourselves ok..i would like to le