WP Weblog

Hello, Miss Angela! Sorry to hear of your latest challenges. I'll give you a
call over the weekend.<br

Hello Stacy and other narcoleptics,

<also wondering if anyone has experienced muscle
twitching and jerking as part of n. i have had
a few episodes, when i am tired, of uncontrollable
twitching and am wondering if it is part of cataplexy.
Several years ago I began experiencing muscular twitching in my hands. It didn't hurt, but was quite alarming. My dad died in 1967 of ALS which is commonly known as Lou Gehrig's disease. One of the phenomenon which accompanies ALS is a highly specialized kind of muscular twitching called "fasiculations" which can readily be seen in the upper arms. Those kinds of twitches indicate the motor neuron is dying which is what occurs in ALS. Since I hadn't noticed any in my upper arms, I began doing some reading in Adele Davis' books on nutrition. She's been my "guru" for a long time. For muscular twitches, jerks, and leg cramps, Davis recommended magnesium which is a mineral we all need but don't get in our "modern" foods. The twitching stopped within hour an hour after taking magnesium. I had been taking calcium for foot cramps for several years prior to developing severe cramping in my legs. The magnesium prevented the cramping in my legs and feet. Of course I
still take the calcium. I take 750 mgs of magnesium and 750 mgs of calcium every day. As long as I remember to take these minerals, I am free of twitches and cramping. Additionally I am able to protect my bone density from osteoporosis. (Ladies, these two minerals will also eliminate periodic cramping.) In my opinion, those twitches are not part of cataplexy. In the last couple of years I've developed RLS (Restless Leg Syndrome). Whenever I experience RLS, I know that I've forgotten to take the minerals. Taking 750 mgs of magnesium gets rid of the RLS within half an hour. I believe that magnesium has helped those who have Periodic Leg Movement Disorder. (PLMD) Magnesium and calcium are inexpensive and readily available over the counter. Do some reading on the net about the benefits of these minerals. Of course, talk with your doc. However, if your doc prescribes "drugs" to allieviate the problem, you may want to try the simple, natural, and pragmatic answer
first--the minerals which you need anyway.
also along with this i experience just an overall
low down feeling, like it is difficult to talk and
all i want to do is sit and stare, very heavy and
slow feeling. any feedback?
Yes, I developed those symptoms in 1997. I knew my meds were still working--I was able to stay awake, but I was so fatigued I didn't want to wiggle. I didn't want to do anything, not even the things I enjoy most. People with classic narcolepsy recognize there is a difference between the overwhelming sleepiness of narcolepsy and fatigue. However, at that point I thought my narcolepsy had become worse. I applied for and received my disability. I continued to complain to my neurologist who ordered a blood test. It revealed hypothyroidism. Low thyroid makes a person feel sluggish, fatigued, and brain fogged. I now take supplements and feel so much better. I feel like my old narcoleptic self. I no longer feel as though I'm hauling lead in my rear! LOL!
Talk with your doc about your symptoms. You have my permission to take a copy of this email with you.
i have a call into my
doc's nurse but don't know when i will get any info.
there is just such a variety of weird symptoms with n.
that i wonder if this is part of it. if not i will
be pretty concerned because i know it is not normal.
the other night it went on for a good 40 minutes
(leg kept jerking) and my friend thought he was going
to have to take me to the hospital. i just figured it
is part of the package of n.
any feedback would be helpful.
thanks everyone.
stacy

No, Stacy, leg jerking, twitching you have described are not part of narcolepsy, but these phenomenon do seem to occur to many persons with narcolepsy. I believe they are caused by a lack of the two minerals, calcium and magnesium.
Medications, other than minerals, are available to treat these annoying disorders.
Hypothyroidism isn't part of narcolepsy either, but some persons with narcolepsy do develop it.
This concludes my 2 cents worth. Please keep in touch and let us know what works for you.

Whoops, let me clarify this: leg jerking and twitches which occur IN BED are not part of narcolepsy.
Cataplexy can occur when in bed, but I believe what you are experiencing isn't cataplexy.
Nancy Valencia
Classic narcolepsy; dxd 1969

Sorry all not being on..more problems struck
me..I just found out I have the start of
osteoprosis..(if thats how you spell it )!!<br
anyone know how to stop this..got some info from Dr's
but I need to work out...Hard to do when lower back
is out..its killing me right now! I'm to darn young
for this crap!! Anyway if any of you ladies can help
I would love to hear from you... Thanks a
bunch!!<br

Ann--
37 txs? That's a very impressive number! May I ask how many weeks or months lapsed in between each tx? Did you stay in Knoxville for a day or so? Or did you return home immediately afterward?
Sorry for all the questions, but I'm considering the trip to Knoxville myself (about 10 hours away for me), so I'm wondering about the logistics of how you managed the traveling.
Thanks for any info you might be able to provide.

In a message dated 11/25/00 4:57:34 AM Central Standard Time,
narcolepsy@egroups.com writes:
I've often wondered why our addresses are public. I am on a number of other
egroup lists who keep the members private ... I've seen no problems with such
a policy. Publishing my information as this group does made me really think
hard before joining. What is gained by letting 100% of web users get a list
of email addresses of N's? I started receiving SPAM 2 days after signing up
for this list using an address I've used for over 3 years -- and had never
received any SPAM on.
I would like to respectfully submit that the list owner examine motivations
behind keeping the list members public and seriously consider changing the
list policy.
Thanks,
Leslie G.

Wow, that is the coolest looking photo Ray!<br

Hi and welcome to the group :)

One thing I need to say is to be careful of B Complex because the Niacin in it flares many people. I understand that you can purchase non-flushing B complex and that is with niacinamide . I personally am afraid to try it. Everyone is so different.. probably why its so hard to cure :(

Funny , I have been to all the sites you sent... they were ok I guess. I ordered and received a sample kit of Rosacea Cure...... it wasn't for me. I think it made it flare more, when I started out not too bad to trial it !

Welcome again and keep reading and posting [INLINE]

First of all, let me just tell everyone who is reading this, that my
rosacea was brought on by using a very potent topical steroid on my
face at a dermatoligists request. I did this however, for 6 months
twice daily, only to later find myself in rosacea HELL!!
After searching and searching for 3 long tiresome years, many times
not even wanting to go on with my life, as my rosacea was SO severe
and dilabting that I was housebound and could not leave my house for
any reason whatsoever to do anything except for the occassional
doctors visits in hopes to find the right doctor... unfortunately, to
no avail.
At last my search was long over with after I did a search on
Dr.Bitter's website. I check for any doctor who was even remotely
close... but now that I think back, I would have gone to the ends of
the earth to get better... I would have done ANYTHING just to have my
life back.
I found Dr. Ritchie in Knoxville, Tn in August of 2000. Right away I
called the number that was given on the site and asked exatly where
they were located. The nurse I spoke to, told me that they were
located in East Knoxville. Then of course, I asked the next obvious
question... how much was the doctor's fee. When she told me he
charged only $175 for an entire photofacial and whatever else needed
to be done, with no additinal charges for any other areas other then
the face, I was stunned. I couldn't believe it... Then I called my
husband as well as my mom to tell them what I had decided to do... of
course the first thing they thought,was I was some kind of looney
tune to want to travel 4 and 1/2 hours one way to go to any doctor.
Of course later my husband agreed because he wanted me to get better
just as much as I did. After all, he had seen his high school
sweetheart, someone whom he had known his entire life, dwindle down
to almost nothing... no life, no feelings, emotions, only devastion
and disbelief, wondering why LORD is this happening to me. What GOD
awful thing have I done to be in such a bad way.
To make a long story short, I made the appointment for the following
Friday. I knew since they had an opening that quickly, that it was
meant for me to make this trip. Something inside of my gut, was
telling me to go.... that it would be the best decison of my life...
and I would not regret it for one single moment.
On that HOT day in August, my husband and i made the drive down to
Knoxville. Terrified, not knowing if this doctor would be able to
help me or not, I took the chance and went along with my gut
instinct. Upon my visit he looked at my face and evulated me very
closely under his large light... which then I was hardly able to
tolerate. He told me since my skin was olive, that he knew he could
help me... possibly even cure me, however, with all the sun damage I
had from previous years of baking in the sun unprotected, that it
would take a very long time, that he wanted to take extra extreme
precautions and would do so accordinigly. Then he diagnosed me having
the most severe case he had ever seen. I began to tell him how I was
unable to do nothing at all, not take a warm bath, shower, go
outdoors in the summer months, stay indoors in the winter months, eat
anything hot, cook, excerise, have any kind of social life whatsover,
not even be initimate with my husband of 22 years because of his body
heat. All my meals had to be prepared in the microwave and sometimes
even the exhaust from the microwave would bother me horribly, almost
to the point of having to eat sandwiches or salads everyday for a
very long time. I could not read, or watch tv, drive, get on the
computer, because of my eyes, I explained to him. I could not sleep
at night unless I sat in an upright position, nor could I bend over
to do simple things such as pick something off the floor, whether it
be a shirt of my husbands, or tie my own shoes. Living my life was a
total nightmare... to the point of not wanting to go on anymore...
I looked up at him when he came back into the office before beginning
my first tx, and he had tears in his eyes.... and he told me how much
I had broke his heart to hear such a terrible story from some one who
had so much living to do... that's when he made the promise to me
that he would help me no matter how long it took, but in the
meantime, I had to be willing to do my part as well.... which was
obviously fight for myself as hard as he was willing to fight for me.
Right then I agreed!!
The first 3 txs were not that aggressive,,, remember due to my skin
being olive. He used the 570 and the 590 for two complete passes over
my entire face using an energy setting of about 33 and also a 38 with
a triple pulse each time.
During my 4th tx, he said he wanted to try something altogether
different, so he brought out his YAG 1064 and started slowly around
my troubled area, only using a few zaps on my temple to see how my
skin would react to such a strong laser. Then he moved to my ears and
did a few zaps there as well... again to see how my skin would react.
All the while he proceed to use the 570/ and the 590 all over my face
for another two complete passes.
My 5th tx was pretty much the same, but since my skin reacted as if
he had hoped that it would, he proceed to use the YAG again, only
this time a little more aggressively on other areas of my face, still
not using it completely over the entire face... not yet anyway... but
also made a couple more passes with the 590/ and also the 645, with
an energy setting of about 40 this time.
I asked him upon my 6th tx why he had never used the 550 on me and he
explained that since my skin was darker then most, that he wanted to
take that slowly as well and since I had responded so well to the
YAG, that he would start slowly the next time by using the 550. The
6th tx was basically another YAG tx, a little more aggressively then
the 5th, also two more passes were made, this time with the 590/ and
the 695/ all with energy settings of 44.5 with triple pulses
My 7th through 9th tx went pretty much the same except he used not
only the YAG but also triple passes this time with the 550... very
slowly at first.... the 570/ and also the 645... all with the energy
settings of 44. 5.... except when he used the 550 he used a much more
conservative setting... I believe of about 33.
After my 9th tx, things started to improve greatly. So upon my 10th
tx,he was much more conservative and thought he would give me a
break... and went about things a little easier... avoiding the YAG
altogether. However, after this particular tx, I didn't do as well.
The 11th through the 15th tx were extremely aggressive. During my
11th tx the YAG was used all over my face, both cheeks, ears, chin,
nose, forehead. Before hand, the 590/645/ and 695 filters were used
with a combination of different enery settings ranging anywhere from
38 to 44.5joules, all with triple pulses. During my 12 and 13th tx, a
new laser was used called the VARIA, which actually goes deeper then
the YAG and also a laser called the DORNIER. This particular laser
goes deep as well as shallow. Also a double pass was made with the
550/ w/ a 38.5 j and the 570/ w/ a 40 j.
13th and 14th tx BOTOX injections were injected into my problem
areas, but not before 3 complete passes were made with the 645/w a
44.5 j and the 695 w/ a 40 j, also the VARIA was used for the third
pass, then afterwards, BOTOX injections were injected into the muscle
as well to eliminate even more flushing. Tx # 15 was a little less
aggressive using the VARIA and some BOTOX and one complete pass with
the 590, energy setting a 44.5 Remarkable improvement so far!!
16 through 20 was mostly to try to eliminate the blotchiness,
therefore the 550 and the 570/ 590/ 645/ and the VARIA were used.
Each tx between 15 and 20 the energy settings were beginning to
increase by now to 49.5j to 52j and even a 55j was used as well.
Double and triple pulses were used this time. Good success also after
these txs.
A little break was taken to see how the outcome of my txs... however,
I had a bit of a setback due to some stressful situations in my life
and had to return a little sooner then expected.
Tx 21 through 25, my doctor was trying to ridden me off all the
hyperpigmention from all the aggressive txs thus far, which meant a
lot of the 550/ and the 570/ and the 590 were used... and of course
again the VARIA. After the 25th tx a lot of the hyperpigmetion had
been completely gone except for the areas around my temple which have
obviously been the most difficult area, it has been my troubled area
the entire time.
26 and 27 were less aggressive again using only the 570/590/ 645/ and
also the 755, with double and triple pulses. Energy settings were
49.5 to 52 this time. I didn't do as well this time. I have come to
notice if the IPL was used alone and no other lasers, I usually
didn't do as well.
28 through 30 were done most aggressively, this time with another new
laser... the power peel which was to help eliminate even more of the
hyperpigmention... before the power peel was used, I had the VARIA
used all over for one complete pass. Each time my entire face has
always been treated including my ears as well.
31 through 33 even newer lasers were used called the power lite which
is suppose to stop post tx flaring along with the profile... OUCH!!!
very painful laser that felt as if lots of tiny hot needles were
hitting alongside my face. About 90% clearance at this time.
Between 34 and 37 the same lasers were used from tx 31 to 33, except
for the profile, yet another new laser was used this time, not
exactly sure what this laser was called. Again even better results...
about 95% clearance.
I'm trying to make it to the 100% point sooner rather then later,
hopefully will be achieved within the next few txs... Can everyone
guess now where I got the name unique challenge??
Yes, its been a long hard road to travel, with lots of side effects,
but has definitely been worth every minute of it. My doctor has been
in close touch with me and still is constantly checking to see how I
have been improving over time. He seems to think within the next few
txs I will at last reach the 100% point and then will continue to
reavulate me every 3 months for awhile just to make sure everything
is still going accordingly. We will then try every 6 months and then
have my usual maintance tx if and when all goes well.
Also most 3 years and 37 txs later, I am doing more now then I ever
dreamed of doing. If you asked me if I would go through all that
again... in order to get back my life, I would have to say a BIG
YES!! It's definitely been worth everything I've gone through.
Right now my doctor is researching new lasers that will help even
more so, and hopes to give each patient even better clearance. One
thing I can honestly say about my doctor, he has not only been kind
and understanding, very sympathetic and has been there for me
everytime I've had any questions, and there have been lots of
questions along the way, he's also very confident at what he does and
has more patience of anyone I've ever known.. Throughout the entire
tx protocol his fee has only gone up $25... he says he trys to keep
his prices reasonable so EVERYONE can have the txs that are necessary.

Hi I am new to the group and of course I am looking for ways to treat my rosacea. I have been using Proactiv with pretty good results as far as acne goes(although they havent completely cleared). I havent seen any difference in the redness though.
I used to go to the dermatologist, but our insurance has changed and our deductible is so high I cant afford to go. So I am looking for any natural solutions. I do use Cetaphil cleanser and moisturizing cream, which works well. I am looking for something to help with the redness and acne. There are so many products out there!I have read back through some of the posts from the group and I feel overwhelmed really. Everyone seem to be using different products. The B Complex sounds interesting. I also found a few products online. Here are the links, has anyone tried them? Rosacea and Acne Treatment. The Natural Way. , Skin Care Products for Rosacea from DermStore.com, Rosacea Cure The , Rosacea Cures & Alternative Treatment Guidelines With Herbs , DERMAdoctor.com
I also have a horrible time with my foundation! It seems to seperate and leave my make up blotchy especially my nose, chin and cheeks-just where I want to cover the most :( I have tried so many different products! I just would like a foundation that will stay and give me coverage without dissapearing on me!
Thanks for any feedback and I will gladly answer any questions :)
Heather~

Karen, we've talked enough that you know I have a
son in similar circumstances so I can relate to what
you are going through. However, your motherly
instinct to "protect" her young must be subdued; instead,
the motherly instinct to "teach" her young must come
into play here. The boy is old enough to know right
from wrong. He must be allowed to make choices and
then to deal with the consequences, be they good or
bad. If you step in and give him money, it will
"teach" him that there is always on "out" and that he
doesn't have to accept responsibility for his
actions.<br
should be relieved. When I kicked my son out, he slept
in city parks until the cops would roust him; then
he'd find a 24-hr store and sleep in the bathroom
until someone noticed him and booted im on his way;
he'd sleep under bridges and along creekbeds, just
wherever he could until he finally worked his way
downtown, found one of the many shelters there, and got
himself a bed. It was unpleasant for him, but I feel it
had to have helped him...he knew he didn't want to
live like that for very long and I think it played a
part in motivating him to find work, to find an
apartment and to find a way to get help from the county
through his parole officer. He's still a long way from
the person I had hoped he'd grow up to be, but he's
only 20 and still has time. <br
it up, Karen, and let him flounder; he'll learn. And
he'll make choices again. Let's hope they are better
than those he's made so far.<br

Erica, CONGRATULATIONS on your decision to quit smoking! That is one of the
most positive first steps I can think of before becoming pregnant. I was able
to do this for my three pregnancies...unfortunately now that they are all
grown I'm smoking again and know it would be in my best interest to quit
again also. Good Luck! Marilyn

I have a question, this has nothing to do with
handicapps unless you consider pot a handicap...I'm a
widowed mother of one son. The son never got it trouble
when he was growing up...snuck around smoking
cigarettes, but all kids do don't they?<br
moved out into different directions of the country, he
in California and me in Michigan...neither one of us
have actually been on our own fending for
ourselves....always had a social security check helping us
out.<br
like to be hungry....found out we weren't so poor
while he was growing up.....recently things have been
going poorly for him, lost his job, sold what he did
have, been bounced around from one place to another the
last few weeks, now I just found out he is going to a
homeless shelter.<br
situation with a son or daughter? I can help him, but money
could probably be ended up being used for the wrong
things (he discovered pot). Is this a learning
experience for him? Is it meant to wake him up and get him
fighting for himself? My heart is breaking and I just
don't know what to do...the mothering instincts are
messed up...part of me wants to dump my job and hop on a
plane and go find him, kick him in the rear end and
straighten things out for him somehow....and part that says
he has to do this on his own....where do I draw the
line?<br
right.......?

They were probably trying to get a virus started or something and
they realized they would leave a trail if they stayed on... or they
think that they won't get anymore emails by unsubscribing. We all
know they could just select "no email" on the settings menu.
-andy

Marilyn

Dear Guinevere, Leslie & Michelle:
Thank you all for the kind words and sound advise. You basically
confirmed my belief that all meds should be out of my system prior to
conception. That gives me a LOT to contemplate though. For example, I
have a 20 minute drive to work - will I fall asleep or lose muscle
control and crash? If I take a leave of absense from work will we be
able to AFFORD it? What if I don't conceive and I go off my drugs for
nothing? ARGH!
I have an appointment with an ob-gyn specializing in high-risk
pregnancies on January 8th. I have already discussed pregnancy with
my primary care physician and my sleep specialist. I just want some
gol-durn answers!
Sorry about the rambling; I quit smoking today and I feel a bit
whacked.:)
Hope all is well for you and yours,
Erica

Sorry, that I have not been in touch, I have been
busy setitng up my new Bt instant messenger, and
talking with friends from it, and learning the system, I

Hi,
What is Elidel, is it like noritate or metrocream? with prescription? or is it a moisturizer?
HOw long are u on minocycline? how much mg a day?
Thanks alot,
Violla

Anyone out there? No one seems to care about
posting anymore; no questions go up on the board; hardly
any comments. Does anyone care if the club is deleted
or left up? Angela, what do YOU think about the lack
of activity here? What can we do to increase
participation? I'm open to all suggestions.<br

About the unsubscribe notices...I've considered doing the same, for the
simple reason that I've had my AOL password stolen and some teen porn sent
out through my account, as well as chatroom participation in my name. Since
our email addresses are public in this group, it makes us all targets for
Trojan horse invasion of this kind. This is not to say that this list is the
source of the recent problem I've had, but once one has been a target of this
kind of invasion of privacy, it's easy to get paranoid about where it
originated. I've had to jump through hoops this past week to try to stop the
use of my account by unknown persons. If those wishing to be unsubscribed
are experiencing similar problems, maybe they are taking preventative
measures. I personally decided against such action, since I've become
addicted to reading the posti! ngs when I get home in the evenings, and have
learned a great deal from them. This kind of sharing is too important to me
right now to be willing to give it up without certain knowledge that the
group was used by the person stealing passwords! But it's a possibility we
should all be aware of.

Thought I would share my poem about Narcolepsy... it is about 2 of the
symptoms, having intense dreams and waking up paralyzed. Some people
with Narcolepsy have these symptoms separately, I always experience them
together. Until about a year ago I didn't realize that. I decided that
I am thankful that I do have them together, that way it is easier for me
to decern that it was a dream that someone was breaking into the house
because I am unable to move, thus knowing no one has broken into the
house.

1. Everyone has a photographic memory. Some don't
have film.<br
slowest.<br
night.<br
machine.<br
reverse?<br
territory.<br
empty.<br
don't.<br
universe.<br
June flower.<br
silent. Anything you say will be misquoted, then used
against you.<br
ocean would be without sponges.<br
love peace and quiet.<br
to a sufficiently talented fool.<br
remember...if the world didn't suck, we'd all fall
off.<br
chance of getting something right, there's a 90%
probability you'll get it wrong.<br
if you line up all the cars in the world end to end,
someone would be stupid enough to try and pass
them.<br
up 75% of the world's population.<br
shoe fits, get another one just like it.<br
The things that come to those that wait may be the
things left by those who got there first.<br
Give a man a fish and he will eat for a day. Teach a
man to fish and he will sit in a boat all day
drinking beer.<br
dead batteries.<br
furniture .<br
tax is a fine for doing well.<br
lies, but it doesn't matter since nobody
listens.<br
few.<br
of it.<br
putting yourself in the hands of 12 people that weren't
smart enough to get out of jury duty.<br
travels faster than sound. This is why some people appear
bright until you hear them speak.

Hi Violla,

I do have rosecae with swelling of the face when I am having a flare it swells. I too have take minocycline but the think that seems

To help me the fastest with taking the swelling down is using the Elidel cream. It looks a little redder at first but then takes it down

Over night. I usually like to put it on right before bed and by morning it is down.

I also like the fact that the Elidel is a non steroid cream.

Hope this helps.

KK

Hope everyone had a very happy Thanksgiving. I have a question...does anyone
know why we have recently had two people unsubscribe to our group? Marilyn

Hi,

If any of u have moderate or severe rosacea with also a swelling of the face, can u please tell me what antibiotics helped, did minocycline help also with the redness and the swelling?? and after how long to expect and see better results?

I have a swelling above my cheeks near the eye area and it seems to get worse. Today I started minocycline (50 mg per day if it wont irritate me than I shal upper it to twice a day). I hope this will help calm things down.

Thank u for any ones help.

Yes, Denise my friend, you can actually go to
www.rosacea.ii.net/treatmetns.html and you can read about my success
story. I will however, post my protocl treatment as soon as possible.
Also thanks so much for sharing your experiences with all of us. I
was aslo very sorry to hear about your mom. My sorrow for the loss of
your mother. If you just need to talk to someone who honestly cares,
please feel free to email me personally.
Ann

Alright Ann, you motivated me enough. I'm ready to share my story.
You can use it if you want, but I also wanted to share it with the
whole group. I'll try to quickly summarize. Thats all I have time for
anyway.
My names Kat Hummel and I am a 22 year old college student living in
PA. I developed rosacea about 2 years ago, before that my face was
fine. I had the occasional teenage break out, but nothing to
untolerable. My rosacea started off mild and only on one side of my
face. I ignored it for a while thinking that it was some sort of
temporary rash. After a while it spread, but only on the right side
of my face. This was very akward looking. I almost wished that it
would spread to the other side of my face just so it would look more
uniform. I finally went to my family doctor and had some blood work
done with negative results on everything I was tested for including
lupus and also retested on chemicals for my enlarged thyroid. That is
when I decided to see a dermotologist and this is when the wide range
of treatments and loss of money began. I was first put on
tetracycline and metrogel which did not help at all. The
dermatologist did not want to except this and continued to increase
my dosage. I was then given a vast array of creams and antibiotics to
use with no prevail. A couple made my skin worse and a couple helped
for a couple of days and then stopped.
Then I decided to join this group. It seemed that a lot of the
members had given up on dermatologists and had taken more of the
natural route. I have tried a lot of their suggestions. I continue to
take some that I think help such as alpha lipic acid and aloe vera
drink. I purchased the all famous rosacea diet, but found it very
difficult to stay on. I do limit my sugar and carb. intake which
seems to help at times. Right now the best medium I've found is
inbetween all the remedies. I take doxycycline and use cutanix, but
also watch my diet and take natural suppliments.
Now let me tell you how rosacea has effected me. It destroyed my self
confidence. I was hit with it out of nowhere and all of a sudden I
was restricted from everything I enjoyed in life. I was told to avoid
eating everything I like. I was told to avoid harsh weather, when I
am a enviromental major. I was told not to drink alcohol when I just
turned 21. I was told to avoid stress, when I'm a college student. I
felt like I was told to stop enjoying life.
On top of this I was just diagonised with social anxiety. I've always
been shy, but I feel that rosacea is to blame for this condition. I
avoid social events. Everytime I get intimidated by people, I turn
noticable bright red. During these times all I want to do is crawl up
in a ball and die. It has effected all my relationships including the
one with my boyfriend. I can not help but feel that I am ugly and
that he could not possibly still be attracted to me.
Right now I'm at the point where I'm close to finishing college
(which has been a massive struggle) and I have to start selling my
self to further my future. How can I do that when I'm terrified of
even communicating with people? I know this is a bigger problem then
just rosacea, but I would feel a lot more confident without this
condition.
IT IS VERY HARD TO STAY POSITIVE. I resent everyone who do not have
this problem and take it for granted. I resent myself for not
appriecating the portion of my life I did not suffer from this. I
look at pictures of myself when I was younger and cry. I feel like
there is no hope.
I know I don't write often, but I appreciate this group so much. Just
knowing I'm not alone is what helps me get up in the morning. Thank-
you Ann for fighting for us. And thank-you for anyone who has taken
the time to read my story. Good luck.
Kat

Hey Erica,
My recommendation, for what it is worth, is to go off the medication before
you decide to concieve. I was on Paxil, Respiridone, and another medication
when I became pregnant. I know for a fact that Paxil is more addictive than
some other anti-depressants, but all in all, they are difficult to withdraw
from, on an immediate basis. So, if I can make a suggestion; when you decide
you would like to concieve, begin coming off your medications over the
course of a month (took me a full 5 weeks to taper off my Paxil) and remain,
as long as possible, off your medications during your pregnancy. I have been
told, as well, that these medications are 'safe' to use during pregnancy,
but have also heard that that is under the consideration that someone would
be doing much worse if they were not on them. I don't recommend being on
them while you are pregnant, but if the medications are necessary for you to
function at all, then the risks are sometimes worth taking. I became
pregnant while I was on Paxil and Respiridone. I could come off of
Respiridone immediately, because I had not been on it for long. But, with
the Paxil, immediate withdrawl from the medication during the most sensitive
time of my pregnancy, meanth for weeks of intense withdrawl symptoms, a
reversal of all Narcolepsy symptoms (I also first took Paxil for Depression
and then discovered I had Narcolepsy), and an intensity of emotions that
required a lot of effort and strength to get through. Ultimately, I had to
return to taking my Paxil medication. I eventually had to decide, for
medical reasons and for the safety of myself, that I could not continue the
pregnancy. The pregnancy didn't end because of taking my medications, but it
ended because I had trouble dealing with many things, that were co-related
to the withdrawl from my medication too quickly, as well as some other
factors. So, if you decide not to take medication while you are pregnant,
keep in mind that the effects of coming off the medication, are very
difficult to handle, while you are also dealing with the intensity of
pregnancy hormones and fatigue that comes with the first 3 months of
pregnancy. (I am not sure if the withdrawl from Zoloft is as difficult as it
is with Paxil, but I know that they all come with thier difficulties and
withdrawl symptoms.) My suggestion, then, is to discuss some more with your
physician and maybe even an obstetrician, whether or not you can hold off on
taking your anti-depressants, and especially Ritalin, for the first 3 or
more months of your pregnancy while no one really knows their effect on the
fetus (they dont' really know the effect on the fetus as they have never
doen long term studies). See if you can't come off them in the few months
before you plan your prengancy and if not, see if you can't plan a withdrawl
schedule in the month that you are pregnant. I don't take Paxil anymore, as
I found it's withdrawl and it's addictive tendencies too strong and to
disruptive to my mental health. I take Modafinil, to help with my EDS as
Ritalin cause pharmacologically induced mania, for me.
From what I understand and have heard (I don't know if this is correct
information), Ritalin is a risky drug to take during pregnancy, and should
be considered in detail. What I do know, is that despite everything that I
say, if you're planning to work while you're pregnant, you might have some
trouble. I know for me, I was unable to stay awake for more than a few hours
at a time. I had to sleep about 15 hours a day, in order to function during
those first few months of my prengancy. I also know, that the most
apparently Narcolepsy symptoms I suffered with, where those which the Paxil
tended to help (like the severe hallucinations I often got just before
sleeping and waking up, that many of us know so well). I cope with these
symptoms now, not being on Paxil, and have had to adapt and re-arrange my
lifestyle so that I can cope with such symptoms. Unfortunatly, I have had to
make many ajdustments and continue to suffer. (I work an 8 hour day and I
usually have to sleep for an hour or so when I get home otherwise I cannot
function for the rest of the evening. Unforutnatly, I cannot take Modafinil
after 12:00pm as it can disrupt my sleep pattern in the evening.)
So, all in all, I guess if it's necessary for you to work and function
during your pregnancy and you're not able to take a leave of absense you
should consider, for your benefit and possibly the benefit of your child, if
you still deal with depression, to take the medication (I don't recommend
taking Ritalin, though, but those are just my thoughts on the drug.). If you
decide that you prefer not to take the medication during pregnancy,
depending on the severity of your Narcolpeys and your Depression, you may
need to either reduce your hours at work, or see if you can take time away.
Anyway, a lot of people cannot do that, and so, those are jsut a few of my
thoughts and somethign to think about. My EDS is very severe, most likely
because of my depression and other mental illnesses, and so it was necessary
for me to take the time I needed to build up my energy and strength during
those first few months. Oh, and if you have never been pregnant before,
expect to be VERY HUNGRY!! I felt, that because of my Narcolepsy (that made
me tired and with alack of energy to begin with) and my depression, that I
was not only hungry a lot, but FAMISHED the rest of the time. I ate about
24/7! I never gained a lot of weight. I think my body just needed it in
order to function at the best level that it could. After my pregnancy was
over, my appetite nearly dissapeared. I guess I was making up for all the
food I had eaten in the months before! :o)
Anyway, if you have any questions I can try to answer and help you. I am
certainly not a professional or an expect on either of these topics, but I
have been pregnant, I do have Narcolepsy and I do have depression. So, I can
try to give you a few thoughts and insights into how it was for me. So,
thats' my 2 cents worth (more like a buck, but anyway!), and I hope that it
helped in some way.
Take care of you and Good luck!
Love,
Guinevere
Guinevere Aislyn Aurora
Moderator: Whispers of Sadness
http://members.tripod.com/whispers_of_sadness/
}"{ Budderfligurl }"{

Hi Anne,
I'm wondering if you have posted your
process/protocol anywhere. It sounds like you
have worked very hard to achieve your success.
Denise

Don't let the bugs bite you and don't play in the fire.. But Do have a extra
marshellow for me. Dorla

I remember my grandmother always commenting on my
"beautiful rosy cheeks" (probably I was about 4
or 5 years old at the time). I also remember my
friends (when I was maybe 11 or 12) joking about
how easily I blushed (I was very shy, and assumed
that was why). I never really thought anything
about it. A few years ago (in my late 30's) I
noticed a couple of purplish dots on my face, and
a few small patches that were redder than the
rest of my face. My mom died of melanoma, so when
I went for a skin check I asked the dermatologist
(who was truly awful), and she said it was
rosacea. Basically things remained the same until
this winter. I think the very cold, very dry air
really triggered an attack. When I use a hot
tub my skin gets redder, but then seems to calm
down. I definitely have the beginnings of the
mask like redness now.
I also have diabetes, and my blood sugar has been
high all winter. I'm wondering if there's any
relationship. Am wondering too about the food
allergy possibility, as I have heard that food
allergies can make diabetes worse too.
Peace,
Denise

OK, guys, here's the informal "poll" question of the week.
I had another hypnogogic hallucination this morning, after I hit the snooze
for the first time. (That's the thing I hate! I do so much better when I hit
the snooze, but that's when I have the hypnogogic hallucinations the most!).
Anyway, the hallucination involved my wife leaving me and (in the dream) I
went to bed. Then the alarm went off and I woke up again and she wasn't
there (she had gotten up to go pottie). I started crying and she came in and
comforted me. The point is that this is the exact sort of hallucination I
get, and I can't distinguish it from reality. Sometimes I will actually
accuse her of saying things she never said, they were said in one of these
dreams.
What is your experience with these? Similar to this, ie reality based? Or
are yours more fantastic?
Clynch
clyncy,
my dreams are both. i remember asking a friend if he
told me he was in love with a new girlfriend because
i thought i remembered him talking to me about it.
he just laughed and said no way and i realized this
was just another dream. i've had hh where i just knew
someone was standing by my bed because i heard them
come up the stairs and into my room and when i finally
get the courage to turn around noone is there. but there
have also been a few occassions where i just knew i
was dreaming because it was too unreal. it is real
freaky thats for sure.
stacy

Michelle,
Thanks for the link. Since you are from Australia, How is the job market
there? I've often thought about living there. I believe I would like to be
involved with either GWS or Estuarian Crocs. What do you think? What does
the average home cost in Australia. Does the Australian Govt have any
Programs for Drug Purchasing? or are you on your own?
-Andy

everyone have a good weekend..I'm going camping with our two scout
groups...probably going to get a little wet too...lol Ray

Mine started 35+ YEARS AGO as blushing!!!!!

OK, guys, here's the informal "poll" question of the week.
I had another hypnogogic hallucination this morning, after I hit the snooze
for the first time. (That's the thing I hate! I do so much better when I hit
the snooze, but that's when I have the hypnogogic hallucinations the most!).
Anyway, the hallucination involved my wife leaving me and (in the dream) I
went to bed. Then the alarm went off and I woke up again and she wasn't
there (she had gotten up to go pottie). I started crying and she came in and
comforted me. The point is that this is the exact sort of hallucination I
get, and I can't distinguish it from reality. Sometimes I will actually
accuse her of saying things she never said, they were said in one of these
dreams.
What is your experience with these? Similar to this, ie reality based? Or
are yours more fantastic?
Clynch

Hello Ann

I wonder what in the heck would bring on rosacea literally over night?

I mean one day your normal and the next day your beat red!

This disease is so very strange and it does not affect everyone the same way.

I,ve had mild rosacea for about 10 years now.

Its so mild that no one knows I have it.

I was at a customers house the other day and she commented on what a lovely complexion I had!

She says I wish I had your complexion.

I thought to myself NO you dont! LOL

Funny also about me,,,,excercise even vigorous does not affect my rosacea.

Actually it does the exact opposite.

What do you make of it?

Also Im pretty good with weather.

I can go out in the sun but of course I do not

bathe in it like I use to just in case it develops into full blown

rosacea!

Thats what happend to my freind.

She got rosacea literally over night while falling asleep in the sun!!

It is apparent to me that people with rosacea have VERY sensitive veins!.

Does vigorous excercise make some of you worse?

And again what in the heck causes rosacea over night?(other than falling asleep in the sun!)

Oh how I wish I knew the answer to that one.

Marilyn

I post this site every year because not only is
it soooo cool, but it fits in with the 4th! One
image of the thousannds that display when you go here
is shown as our club picture right
now.<br
target=new

Well, how good did we do at helping this person? I am sorry that
she/he choose to leave but I can't blame the person. Stronger
measures should be taken so this doesn't happen again.
Aimee

Erica,
Hi, I wanted to reply to your last message in regards to pregnancy
and
narcolepsy. I have a web site http://www.sleepyheads.org where I
post all
the information I gather on narcolepsy. One of the FAQ is about
narcolepsy and pregnancy. Here (straight from my web site) is what I
have
found on that subject:
---
The official position of the American Academy of Sleep Medicine on
narcolepsy medications and pregnancy is that for any given patient,
the
need or benefit of taking medications for the mother must be weighed
against the risk to the fetus.
Pemoline (cylert¨) is a Pregnancy Category B drug which means that
animal
studies indicate no fetal risk and there are no controlled studies in
humans.
Methylphenidate (ritalin¨) is a Pregnancy Category C drug, meaning
animal
studies HAVE shown teratogenic or embryocidal effects (damage or
fatal to
fetus) and there are no controlled human studies.
Category D (methamphetamine or desoxyn ) means there is evidence of
risk
to human fetuses. In other words, cylert would be the drug of choice
if it
is necessary to have medication for safety reasons or if the mother
must
drive or cannot function without medication.
The treatment for cataplexy and hypnagogic hallucinations, tricylic
antidepressants, (e.g. desimpramine, vivactil¨ ) or serotonin
reuptake
inhibitors (e.g. prozac¨, zoloft¨, paxel¨, effexor¨) are
not usually
recommended during pregnancy as the safety has not been established.
If
cataplexy is mild, it would be better to eliminate taking these
medications
until after the baby is born. Again the health care providers and the
patient must consider the risk to the fetus against the risk to the
mother
of not taking any medication.
Other than needing to modify medications, there are no reports of
women
with narcolepsy having any greater problems carrying a healthy baby
to full
term than any other women.
---
Hope this is helpful.
Michelle
missmack@...
http://missmack.home.mindspring.com
http://www.sleepyheads.org

In a message dated 11/21/00 11:03:40 AM Central Standard Time,
narcolepsy@egroups.com writes:
I agree that Zoloft can be a wonder drug -- I know first-hand. But after I
experienced severe withdrawal from one of its cousins, Effexor, I realized
that it is a very powerful drug -- it effects nearly every system in your
body, not just your brain. And despite the name "SSRI" -- "[specified?
specific?] seritonin reuptake inhibitor" it is not in the least bit specific.
One reason constipation is a problem when on these drugs is because of the
huge amount of seritonin present in your gut (which gets mucked with when you
take the drug).
My decision was to go off antidepressants. I wasn't on stimulants, but with
two kids on them, I've heard enough scare stories that I can't believe they
are as harmless as often presented either. Again, ritalin acts on all
dopamine centers.
What my fear/worry boiled down to was that there is a pretty well-thought-out
theory that our brains adjust to the antidepressants -- we stop making so
much seritonin because we don't need to any more. That's one reason for the
withdrawal (which is rarely noticeable in Zoloft, but can hospitalize people
coming off of Paxil). What if the fetus' brain adjusted so well that it could
never re-adjust and make enough seritonin or dopamine on its own? (Many on
this list have said they "get used" to the ritalin and have to up their
doses).
I got off my antidepressant months before I got pregnant (and my claritin
too, which is supposedly fine for pregnancy but a real no-no when
breastfeeding -- that didn't make any logical sense to me). The first 3
months of pregnancy were nearly hell. (I have just started my 4th month). I
started going to an acupuncturist, which I felt helped. There were days I was
alert (and able to function) for no more than 6 hours total. My husband has
always said he wants 2 kids, and I know I don't want to go through that
again. But I already have one severely disabled child (spina bifida, multiple
learning disabilities) and one child with severe ADHD. I will do *anything*
to up the odds of having a "healthy" child. I know too well how physical,
mental and behavioral disorders can wreak havoc on the lives of everyone in
the family.
Of course, this is just my opinion. You have cataplexy to contend with, which
I didn't. You may be required to work at least 40 hours a week, no matter
what (although my sleep doc says he always signs temporary disability papers
on pregnant narcoleptics -- the only "shoe-in" for disability). I do highly
recommend you do some independent research. An extremely eye-opening book I
read was "Prozac Backlash" -- very well written and documented.
Unfortunately, many of the people who prescribe these drugs don't read past
the information the drug companies supply. Please do not rely on them as your
only source of information.
Good luck,
Leslie G.

Hello Marilyn my friend, I have known Sheila and a lot of the others
when there rosacea was only mild, Sheila would call me SO many times,
that both of us actually had to get cell phones so we could just be
there to support each other. Both of us always crying with all our
pain and agonizing suffering, we were both blessed by having found
each other via the net.
Not only I myself have been mild in the past, and have gone to severe
within a 6 month time frame, but SO many other people I have known
from other groups as well have also gone from mild to severe within a
few months.
I have never had any intentions of causing anyone to become upset or
angry with me, I have only wanted to help others since my rosacea is
now 95% better... however, only because of my constant persistent,
strong will, and the strength to get full control of my life back...
which obviously I have.
As a matter of fact, Jeanne and I were just chatting on the phone a
few minutes ago. If you wish to read about me through the archives, I
encourage you to do so... Sheila as well as many others I have met
via the net and have become friends with have not only been dilabated
from this diseaese that has kept them from having any kind of social
life whatsoever, have not been able to do any kind of work outside of
there home, have actually felt like prisioners in their own bodies at
one time or another. This is in no means to frighten anyone of you
out there,even though there are a few you are probably thinking
something else altogher... that is not my intention.
I have come so far and I only want to be able to give something back,
doesn't necessarily matter if your rosacea is mild or what stage it
is in at this point, persistent is the only way I know how to fight
back... so darn it... if thats what it takes in order to get a
somewhat normal life, then that's what I guess is necessary... in my
case anyway.
I have probably helped approxiamately 40+ people, never meeting
them in person, only over the internet who have gone to my doctor and
have been completely renewed into a newer and much better way of life.
However, in answer to your question, yes, unfortunatley it can come
out of nowhere for no apparent reason, one night you could go to bed
and be perfectly fine and then the next day you can wake up and bing
bang boom!! there it is bigger then life.
Marilyn my friend, if you ever have any questions, please let me know.
A friend who is concerend,
Ann

Dear Stacy & all,
I just returned home from my appointment with my sleep specialist. I
don't have to return for ONE YEAR!!! After months of agonizing trial
and error with meds, I think we finally have it nailed down.
With regard to fatigue: I, too, suffered deep down muscle aches. I
felt as if I had just finished running a marathon. It turns out, I
was indeed experiencing CATAPLEXY. I know some of you have said you
do not want to use anti-depressants, but they have CHANGED MY LIFE! I
had been on Zoloft (for depression) for two years before I was
diagnosed with narcolepsy. I continued the Zoloft as a matter of
course during my trial and error months. At my last appointment, the
doctor decided we should try spreading the Zoloft out throughout the
day instead of all at once in the morning as I had been doing.
Three months later, I feel like a new woman! Obviously, I am still
more tired and easy to take ill than non-pwn. However, at least now,
I can make it through the whole day at work without wishing my desk
chair was motorized or I had an assistant to push me around on it. :)
In addition, I, like many of you, as well as my doc (at first), did
not recognize the weakness I felt as cataplexy. I, too, was wary
about starting anti-depressants. However, it is worth a shot, folks.
Zoloft did not "change my personality" like I'd heard; it merely took
the edges off my depression cycles. The added bonus is the control of
the cataplexy. My doc told me that depression and narcolepsy, as
disorders, have the same chemical origin. Many pwn are also depressed.
God knows I am not an authority on narcolepsy, but I hope my
experience helps someone.
On the flip side, my hubby and I have decided to try and start a
family. I plan on ceasing my meds when I get pregnant, but I am
worried about any effects the meds have on the fetus in the time that
passes before I realize I am pregnant and go off them. The research I
have done on my own and the questions I have asked my doctors have
led me to this: Ritalin and Zoloft *should* be okay. Does anyone have
any experience with pregnancy and these drugs?
Thank you in advance and good health to everyone. I have not
contributed to the egroup for some time but enjoy reading the daily
posts.
Erica

Thank you, Karen. I really appreciate your kind words. R

Hello, Ray!!! Have a truely wonderful Birthday celebration today!!!! I hope
your day is full of sunshine and laughter and good things!!!!<br

I agree with u. Ann is a doll baby. Please lets not fight amoungst each other! Lets pull together. Jeanne

Hi all,
I just wanted to add my 2cents worth on the Lyme Disease thread. Just by
accident I discovered a whole article on Lyme disease, courtesy of another
lister who posted a wonderful article about coping with chronic disease.
Following the links about illnesses on this site, I came across this article
on Lyme disease, be aware it's long and complicated, but it immediately got
my attention because it is a viral disease, that attacks the immune and
other systems in the body, and the list of symptoms definately include all
those we N sufferers keep talking about, EDS, C, Brain Fog, Fatigue, lower
than normal body temperatures, sensitivity to extremes of temp, both hot and
cold, muscle pain and all those symptoms relating to fibromyalgia, for those
of us that have that too, muscle twitches, etc etc, its well worth a read.
The other reason this stood out to me personally is that I did have a
mystery rash, almost ten years ago, pre my serious onset of N, just as
described, starting with a large round ring, or circular shaped spot about 3
-4 inches wide. It was diagnosed as a type of psoriasis, and the spot was
called a herald, (as in heralding the arrival of the rest of the rash) which
then spread across the top half of my body like a t-shirt. The doctors
speculated, but couldn't give me any strong information on what it was or
how it was caused. They put me on a short dose of antibiotics. It was
after that that a large number of N symptoms and the other problems I am
having slowly started to kick in.
We all now know that the latest speculation on causes for N, are related to
some form of toxic immune system problem. Lyme disease seems a good
candidate, as one of the possible triggers. Apparently there are over 100
strains of it, and it is passed by flea, tick or other parasites. Although
over 50 % of cases, have no memory of a bite, rash or flu like symptoms.
It is virus I'd like to be checked for, simply because it red flags so many
of my problems personally and a large number of the hypothalamus related
problems. The Hypothalamus region of the brain is the one that controls all
the functions, sleep, appetite, etc, that are affected by our disorder.
I believe it is something worth a look at.
The Lyme disease alliance website is
http://www.lymealliance.org/Medical/MedCategory3/Med31/med31.html
Ceri Haywood

Hello,
I've been lurking here for a while before but have never posted.
Now I feel I must because my personal friend has been unfairly
attacked. I met Ann about a year ago and she has been nothing but
supportive and helpful. She has gotten me through some real tough
spots. Ann is not the type to just sit back and let others suffer.
Eventhough Ann is very close to complete clearance, she will never
give up the fight to help others. She will always try to make a
difference--she is persistent and that's a quality we need to get
this disease some real limelight so that one day there will be some
kind of cure.
I am a moderate rosacea sufferer, but once upon a time I was mild.
For those out there with unkind remarks to Ann, if you always stay
mild, all the power to you. But that may change. You're on this
Board for a reason. If you don't want to write a letter, that's
your right. But please refrain from any unkind words or comments
because if anyone is damaging the supportive nature of this Board,
it's you.
No need to respond to this email because I will not tolerate any
rudeness. Emails will be just sent back.

Happy Canada Day !!!!<br
how Canada got its name....thought it was really
cool....this is a part of history I never got to
learn...<br
1492, European rulers sent explorers across the
Atlantic to the Americas to claim territory and discover
riches. The Spanish, Portuguese, English, Dutch and
French all wanted a piece of the "New World" for
themselves. Sometimes we forget that the "new world" was not
new at all, but the ancient home of many people who
were called "Indians" by the Europeans. Jacques
Cartier came from the French court of King Francis I to
explore North America. In 1534, on his first voyage, he
explored the Gulf of St. Lawrence. In Chaleur Bay, he met
aboriginal people for the first time. They were Micmac
people, and their meeting was the first time that the
French and the natives traded furs. For centuries to
come, fur trading would be important in the development
of the North American colonies. <br
sailed farther up the gulf and into the Bay of Gaspé, he
and his men were greeted warmly by a group from the
Iroquoian nation of Stadaconé. They had come from their
home, which is now the site of Québec City, on a
fishing expedition. <br
asked the chief, Donnacona, what the land was called.
The chief, who was inviting Cartier into their camp,
replied "kanata," their word for village, as well as
their name for the area around their home, Stadaconé.
Maybe Cartier understood Donnacona, or maybe he did
not, but "Canada" has remained the name of the whole
vast territory that comprises our country.
<br
sons, then returned again to Canada. On his second
voyage, he sailed up the St. Lawrence River and visited
the site of Montréal. He opened the door to French
settlement of the rich land, and later colonists followed.
<br
many became hostile when they understood that their
old way of life could not survive with the arrival of
so many strangers. The struggle to establish peace
and understanding between the people of the First
Nations and the European settlers has continued during
the many centuries since Cartier's arrival.
<br

Showing New York from Long Island to Lake Ontario

Hi Sheila and everyone.

I have deep sympathy for all of you severe rosacea folks.

May I ask a question?

When your rosacea turned to severe from mild did it gradually

come on or did it happen very quickly?

I read a post once from someone that said ROSACEA CAME QUICKLY INTO MY LIFE AND JUST TOOK OVER.MY WHOLE LIFE CHANGED DRASTICALLY FROM THAT DAY!.

Has anyone had rosacea just POP up upon you like that?Or did it start with the INNOCENT looking rosy cheeks that lasted for YEARS?

I like to hear your stories.

Thanks!

Marilyn

I have only been Diagnosed with 'n' since Oct. 6, so if anyone could tell me
if all these diseases and problems everyone is talking about are related to
Narcolepsy? I mean, I don't seem to have any problems except those directly
related to Narcolepsy.
I mean people are talking about some major problems, and I want to know if
any are related to N.
Also,Is there any cataplexy related to Lyme Disease? What are the symptoms
that make you think you have Lyme disease?
-Andy

I totally agree! Couldnt have said it better myself!! Jeanne

Glenda,
I agree with what you said about fatigue.
There is little mention of it in my
readings on N. Because of this, I often
wondered if it was a symptom of N. But
from hearing from pwn i see many (myself
included) who suffer from fatigue as well
as eds. I also suffer from muscle soreness
and aches which i am wondering may also be
a part of n. The way i deal with the fatigue
is partly through medication (dexedrine-not
the slow release kind, greatly helps alleviate
fatigue, but the rebound effect-when med wears
off-is greater fatigue) and through getting
as much exercise as my body will allow. I
have taken up running, something i've wanted
to do for years, but due to n. symptoms, have
not been able to do. it is a struggle, but
helps alleviate some of the fatigue and eds.
i have taken a different approach to meds.
and am trying any natural method which helps
along with a lower dose of meds. i also
tried ritalin, but it did little for the fatigue.
keep in touch. good luck with the doc.
stacy

You certainly haven't beaten me over the head to tell my story. You have been very gracious and patient. You even told me there was no rush, just whenever i felt like doing it. I appreciate that Ann. Take care everybody and lets get on with what we need to get on with. The disease and how to get this thing under control. We are not here to beat each other up!! Jeanne

I haven't posted in along time but I'm always here reading and when I
started reading how everyone seem to be attacking Ann in such a way
it made me really upset. We are suppose to be here for one
another. We should know how each and everyone is feeling living with
this disease. I have severe rosacea. It didn't take me long at all
to go from mild to severe. Maybe around 6 months or less. I'm only
27 with a little sweet 4 year old boy that I adore. It is so
difficult watching myself get worse and worse. There is so many
things that I want to do with my son that i can't do. If I didn't
have God to pray to and have hope, I don't know what I would of
done. Please yall find it in your hearts to think about us severe
ones out here. You might be right here with us one day. I'm not
saying that these stories will give us a cure, but they might lead to
one or better treatments. We need to let people know how it is
dealing with this disease. Of course a lot of u seem mild so u
really don't know how bad this can get. TRUST ME IT'S HORRIBLE! How
would u feel if one day u did become severe and u looked back on this
and said to yourself, "I could of helped make a difference if I had
only written my story!" No one knows what the future brings. But i
sure want to make a difference. U all souldn't be here attacking
Ann, u should try to help out. I know how hard it is writing your
story. Trust me if u all heard my story u would all be in tears
unless your very cold hearted. Lets be here for one another. Lets
make a difference. It doesn't matter if your only mild, u wouldn't
be on this support group if it didn't bother u some. I think what
Ann is doing is a great thing.
God Bless You All,
Sheila

May I just say in response to Denises post........Hear! Hear!
I havnt gone into this site in months because of the borderline
abusive and EXTREMELY defensive attitudes on this board. It is,
obviously to those of us who know better, unnecessary. This is, I
thought, a place to get advice, vent my frustration, and learn some
things about my condition. Instead, most of the posts have been petty
cat fights and accusations. So, goodbye again, and no need to write
in response to this or email me, I'll just send it back to you.
And for those of you w/o day jobs and just go into sites to f**k with
people....do us all a favor and get a job, volunteer somewhere, do
something where you're actually contributing to something, other than
just being a pain in the ass.

WAIT!
The extension on the attachment to this is NOT .TXT
DO NOT OPEN THIS FILE -- IT MAY ITSELF BE A VIRUS
Would the person sending this please resend with the virus warning embedded
in the email as pure text?
Thanks,
Leslie G.
** And to the list owner -- it would be much safer for list members if you
were to change the settings of the list to not allow attachments -- this is a
main way viruses are spread. **

GLenda,
I don't have any real HARD information for you, just a word of encouragement
-- my Mom, who turned 70 this year, was diagnosed w/N in 1980 -- like you at
50. I still think of her as a young woman!
Blessings as you seek to find ways to cope with this,
Susan Z.
Elmhurst, IL

What causes rosacea?
see
Rosacea Misdiagnosed for other diseases?
see tenth article
Brady
group owner

I love the clouds...Everytime I fly..which isnt
that often...I dream what it would feel like to sleep
on those soft, fluffy clouds.... How wonderfully
comfy it would be..... just dreaming..<br

My thanks to all of you for the information you've been sharing with
the group. Although I've seldom posted since joining, I eagerly open
my mail and read my digest of daily postings as soon as I get home
from work in the evenings. Being fairly recently diagnosed at the
very advanced age (for N.) of fifty-something, I'm having a difficult
time coming to terms with this disorder and all the changes it's
forcing in my life. I understand the EDS. But I'm having trouble
wrapping my mind around the FATIGUE FACTOR. I've noticed several
fleeting references to it, but find little info in the discussions of
N. on web pages and in the discussions of this group's members. This
is the most debilitating aspect of N. for me and I would greatly
appreciate hearing how some of you have managed to handle the
overwhelming tiredness that makes every day a struggle. I find the
stress of having to keep moving through it on a daily basis is making
me more suseptible to C. reactions to what used to be minor
annoyances on the job. By the weekends, I'm mentally and emotionally
drained from the effort and sit like the proverbial Bump on a Log
most of the time. I've been on Ritalin for a month, but am going to
have to adjust the dosage and delivery--I find I don't like the time
release and we started at such a low dose that it's already no longer
effective. It seemed to treat the EDS somewhat in the beginning, but
never did anything for the fatigue. After 30 days on it, I'm already
sleeping through it on the weekends. I see my doctor again this
coming Wednesday morning, when I'll have to make a decision about
meds again. You're input would be greatly appreciated.

Things You Don't Want to Overhear Over an Airline
P.A. System<br
your Captain speaking, I just wanted to take this time
to remind you that your seat cushions can be used as
floatation devices.<br
a little game of geography trivia. If you can
recognize where we are, tell your flight attendant and
receive an extra pack of peanuts.<br
altitude allows a unique close up perspective of the local
terrain. I assure you that it's all part of our airlines
new commitment to make your a flight a sight seeing
extravaganza.<br
Eject!!!! Eject!!!!!!!<br
Ummmmmm....Sorry......(silence)<br
takeoff)....uhhhhh....we have to go back ....we ..we ....uhhhhhh
....forgot something.....<br
noticed the loss of an engine, however the reduction in
weight and drag will mean we'll be flying much more
efficiently now. (ironic note: this is actually true for prop
aircraft!)<br
with the suicidal driving tendencies uses when you get
in the car)<br
speaking....these stupid planes are a lot different than the ships
I'm used to, so you'll have to give me some
leeway.<br
closed their shades and watched the in-flight
movie.<br
feet and ... Oh noooooooo!!!<br
That one is always on E.<br
ready.<br
Captain's having.<br
man. <br
airplanes....someday soon I hope to get on one and kick this fear of
flying I have)<br
afraid of airplanes, my email box is getting alot of
airplane jokes now, hehehe......sheeesh!<br
really nice evening!<br

This is for Denise and Lanisa and all the others who seem to feel as
if I'm somehow trying to beat everyone over their so called heads,
trying to get people to send in their stories. For one thing... I
don't want anyone to pity me, because I am one of the survivors,
because I took total control of my life at one point, that's why I've
been as persistent as I have been... thats what it takes after all if
you ever plan on getting on with your lives.... and I did just that!
My intentions have NEVER been meant to drag ANYONE down or make them
do anything they are not comfortable with doing. I totally resent the
fact of anyone... Denise AND LANISA, thinking that I am somehow
harassing people to get them to respond to my VERY IMPORTANT
MISSION.And yes, that's still how I percieve it... a VERY IMPORTANT
MISSION!!!
I am however, very glad to know that you are now only a mild
sufferer, and hopefully in the future you will NEVER have to go
through even half of what i've gone through, if you do per say, then
you might think differently... I know you'd think differently!
As far as having a petition, in case you don't already know by now,
that Kristen has a website that you can sign your name if you wish,
so you might want to check that out if and when you feel the need to
do so.
Furthermore, no one is trying to hit anyone over their heads to do
anything, so I don't know where that is coming from.
I have always said that WHEN I have gotten better, I would do
whatever it took to help others, and have done just as I have
promised.
But for now, don't worry, there will be no more letters in regards to
any one who refuses to only sit on their hands and do nothing only
because they feel some kind of fear about writing their stories.
Don;t any one of you think I had a terrible fear as well as I sat
down to write my own story??? I felt as if I were reliving that
horrbile nightmare, but still wish to share my past experiences with
anyone out there, simply to let them know, that they can be helped as
well. I was not one of the lucky ones who found this group or any
other group until it was much to late for me. Maybe if I had found
this group sooner, my rosacea would have never gone into the severe
stages.
However, you must be in this group for some reason, other then to
state the fact that you are tired of hearing about sending in your
stories... so don't send them in, there will be plenty of others who
do... we don't need you to participate if you feel as if your head is
spinning from all the confusion. I on the other hand, know and so do
ALL that have known me for someetime, know that at least my heart is
in the right place.
Ann

Denise
I totally agree with you..beating people over the head to get them to tell their stories is not productive. I appreciate her efforts though.
Lanisa

Hi there, I work in a Mall and today was sent
home early....normally I'm not too pleased with that
but today it just made me feel good inside. There are
alot of dads here in the city being treated prety
special, I think...they're getting taken out to nice
places to eat and spending time with their families. On
the other hand the beach, park and river are full of
people enjoying the day!!! Mother's day was dead at the
mall too! Thanks to all the people who treated their
dads special today!<br

Wow, Awesome clouds Ray, it looks like you can
touch heaven from there.....but when I get on a plane,
I'm still not looking out the window, hehehe!!!
<br
they say they can see the mountains) I don't actually
think of myself as being afraid of heights...but this
is a little excessive, wink)<br

Ann,
First of all, I really do admire the mission you
are on, and the only reason I haven't written is
because my symptoms are very mild, and I don't
think I have anything to say that would be of
particular use to your efforts, except that I am
frightened of how bad things could possibly
become.
Second of all, while I have a lot of sympathy for
your frustration, I feel that your are doing
damage to the supportive nature of this group and
basically "flaming" people in your frustration
about not gettingt the response you hoped for. I
do understand as a long time activist the
frustration one can feel when others don't or
can't give what you are giving, and expect or
hope for them to give, but the kind of anger,
guilt-tripping and fear-mongering you are
engaging in is, in my opinion, totally
insensitive.
Some people don't write because they don't think
they have anything to add. Some people don't
write because everytime they sit down to write
they are overcome with fear, pain, or break into
tears. Writing about one's personal suffering,
or deep fears and pain can be cathartic and
healing, but it can also be terrifying and
painful. The process of doing this is often used
in a therapeutic way, and is not always
emotionally safe for people who are not in the
right place with the right sort of support.
There are also many people who don't write
because they feel unable or embarrassed about
their ability to write well, or they just get
stuck everytime they try to start.
In lieu of beating people over the head I suggest
trying ways to make it easier for people to
participate--one way might be a petition, or a
group letter, just to show how many people are
affected. Another way might be to provide a list
of introductory sentences, or a questionaire.
Again, I do really appreciate your efforts, and I
also really sympathize with your frustration.
Denise

To all the dads out there, let me send you my
sincerest wishes for a great day today!! Hope you get to
spend at least part of the day with your kids, either
in person or on the phone or on the computer;
whichever works for your circumstances. Have a great one!!
Ray

Hi, Chairbear, what a cute name!! :) I hope one
of our members can give you some answers and/or
advice. Both Angela and I (the cofounders) are AB and got
involved in this club because we had significant others
with sci. I don't know if either she or I could answer
any questions, but I'll bet we know where to get the
answer. So ask away, please!<br
for help would be Curtis Rogers' club, SCI Peer
Support. Please check his place out too:

Well, I had been wondering how many of the folk up watching at 4:00 are N's
... I got hooked at about midnight (central) and finally gave up and decided
to sleep on the sofa with the light and the TV on at 4:00. The neat thing is
I don't recall any dreams with the TV coverage woven into them (I used to
take my morning nap in front of the TV, but I got tired of Martha Stewart
showing up in my REM!).
Leslie G.

Hi. im a 33 y/o fem. i have primary cns lymphoma,
and after spending the past 9 months as a T12
paralegic, the tumor growth on spine has left me with an
incomplete paralysis of trunk and upper extremities as well.
I am on a ventilator 20 hours a day, and am scared
to death.looking for a site where i can ask
questionsabout sci and how to deqal with this. tthank y0ou

Hope everyone has a Happy Fathers Day tomorrow!!!!!<br

Although, I am never sure what type of response I might get from ya Nancy, I
wanted to send out this post.
"this election is a nail-biter!!!!!!!!" I'm not sure about you, but I can
barely wait anymore for the final results.
Take Care
Shimm, who is waiting at the edge of her seat. LOL

Heh...sounds like my house, too, except for the searching for the meds bit.
I'll be doing that in a few months, though. Oh, yeah. I don't have a dog
either. They tend to look very happy in the mornings, which is a cardinal
sin in my house! ;-)
I much prefer cats. If you want them to look grumpy they'll at least try.
Then I don't have to deal with a simpering, happy, "I slept so GREAT and
feel like a million bucks!" face in the mornings!
Clynch

I'd like to join a chat. I have odd hours for work, but i'll join if I
can.<br

hehe, as far as mornings, Oh my! I just have these few words to say,
hehe... "the following are what you hear at shimm's house in the
a.m."
*crash
**bOOm
*bAng
*oooompppppf
*growwwwwwl (the sound the poor dog makes as i punt him across the
room blindly making my way through the house LOL)
*!@#$%^&* (no coffee LOL)
*roaaaaaaaaaaaR (if one persists in calling or attempting to wake me
after i have hit the snooze buttons mm, perhaps 7 times at least lol)
*gasP (if i temporarily cannot find my provigil med bottle lolololol
and search aimlessly to no avail, sweating feverishly, panicking,
dismantling every drawer, closet and small space looking for it, then
looking right in front of me, duhhhhh and realize it was right there
and now *whew, i have a huge mess to reorganize, and #$%i'm just too
tired lol)
**back to bed, lololol that was exhausting
ha-ha
shimm

Let me send hello's out to bobbylee and
musiquail. Welcome, my friends. Are you both disabled? With
SCI or something else? Would you like to see regular
chats start up in here? We have no chats scheduled at
this time, but I'd like to see them get started, if we
can get some people to join in so I won't get lonely
in that room. :)<br

Nahhh, but thanks, I am quite happy actually lol..except for missing
a certain British friend of mine lol..
My husband just filed for divorce and left me because of the recent
diagnosis of N..lovely *eh. I guess the cataplexy spooked him a bit
too much lol..
c'est la vie!
take care all
shimm
--- In narcolepsy@egroups.com, Clynch Varnadore <cvarnadore@a...

Welcome to the club bobbylee653 and trains!!!
Glad you could join us! Feel free to post and let us
know a little about yourself. The message board is a
little quiet right now but the members are
friendly!<br
are handicapped in diferent ways. I live in Michigan
- new resident. I just moved here in November. I
have been widowed twice, my son is grown already and
living in California (I really miss him, they grow up
tooooo fast - this August 11 will be the first birthday
of his I will ever have to miss since he was
born...gosh that's weird, I made it through Christmas,
scraped by on my birthday, somwhow survived Mother's
day...but this is really getting to me. Do you have any
grown kids? How do you get through their first birthday
without them? I can't even drop in his place and
interfere like mom's are supposed to do, lol.)
<br
pay bills and still be able to eat, hehehe. I have
been spoiled, even tho I have been single longer than
married I've always had an income while my son was
growing up.... Now I have 2 jobs, lol.<br
wouldn't have missed the experience of moving to a place
that I had never been to before and making a living!
Finding out alot of things about myself I never knew. I
plan to continue living life as an
adventure!<br
LOL<br

Goodmorning Everyone!!!! Have a terrific Monday!!!<br

Andy,
I agree. I think the other person misunderstood you and got what you were
saying backwards.
I certainly think that Cataplexy is the defining symptom of Narcolepsy. My
doctor in Idaho was very confused when I expressed that I never experienced
cataplexy. The only reason I went to him was because I wanted testing for
Apnea. He gave me a questionnaire of about 100 questions. I answered YES to
9 out of the 10 Narcolepsy questions, the only NO was regarding cataplexy.
(I didn't know they were grouped by disorder, so it's not like I knew I was
answering questions about specific disorders. I knew nothing about sleep
disorders. They were simply numbered 1-100 and I answered them. Later he
told me which 10 were the narcolepsy ones.)
He was very confused and asked myself and my wife extensively about the
cataplexy. The only indication that it may exist in me is that I never get
very emotional about anything, no matter how bad it is. I rarely cry or
laugh out loud or get very angry or anything. He says sometimes when a
person has cataplexy as a child they learn to quell strong emotion and that
MAY be what happened to me. At any rate, there is no indication of
cataplexy.
However, I do have the hynogogic hallucinations a lot, as well as virtually
every other symptom of N. He said if the MSLT showed disturbed REM then as
far as he's concerned he would treat me for N. If not, then he'd have to
make a decision. Either way, he said it woldn't be a confirmed diagnosis of
N unless I start to show the cataplexy.
Now that I've moved from Idaho before I could get the MSLT I don't know what
the new doctor thinks about it. Guess I'll ask him.
Clynch
Folks this is a private response I recieved to my theory on Cataplexy
posted here, and my subsequent reply to said response. I deleted the
senders name since it was to be kept private, let me know what you
think.
-Andy
HERE IS THEIR RESPONSE TO MY FIRST POSTING

I have been reading old posts and found some
about how you adapt a home for wheelchairs. My husbands
first wife had Diabeites. As her condition grew slowly
worse he began doing things around his house to keep
things handi for her. They used to have the washer and
dryer in the basement, and as it got harder for her to
go up and down steps he put them into the kitchen.
He fixed the shower with glass doors that opened and
went around the back of the tub on a track, and put in
a hand held shower on a hose so you could use it wo
wash better than one mounted on a wall. He went to
school as she got worse and learned how to dialize her,
and the bedroom looked more like a hospital room with
all the equipment they needed....he took care of her
until the day she died at home in their bed. He used to
talk about our preist coming to the house, Father
Meyer, ....Father Meyer would visit the sick and he
would alway come to their house last because Charlotte
was worse off than most of them and he always walked
away feeling great, because Lawrence and Charlotte
were so happy with their lives and each other that
everyone they touched in their lives were treated special.
She joked around and laughed and he felt God right
beside her...sort of a renewal to his own faith I think.
<br
became blind, she had every reason to complain and feel
bad, but she was always a happy careing woman, and was
concerned with others feelings far more than her own. I
have met alot of amazing people with various kinds of
handicapps.....and known amazing people who love
them.<br
wheelchair to get around but they are alot less handicapped
than some people with out a handicap.....does that
make sense?<br

Folks this is a private response I recieved to my theory on Cataplexy
posted here, and my subsequent reply to said response. I deleted the
senders name since it was to be kept private, let me know what you
think.
-Andy
HERE IS THEIR RESPONSE TO MY FIRST POSTING