Welcome to all the new members here...<br
usually posting quite often, but lately I haven't really
felt much like 'socialising' and I know it's going to
be a while before I do again.<br
bounce back to life, and once I do I hope I'll be
getting to know you all more...<br
I will look for more Valentine pic's.. I also got
a call from my Aunt..seems my only Grandma isnt
doing very well. My aunt wants me to go and see her
before I go away for vacation..She thought that last
nite ( sun ) was it for her. For those who are
wondering, yes she has been sick for quite sometime now..So
just in case my Grandma passes on..my aunt wanted me
to see her..Oh Brother I'm not ready for this..She
is very,very close to me and this isnt going to be
easy..I know its never to easy. But I hope not yet. Just
have to pray that she makes it until I see her on Sat.
Have to go..wind I hope all is going ok for u so far.
God Bless those whom are close to us!<br
Sorry forgot!
SA= sleep apena
RLS= restless legs syndrome
PLMD= periodic limb movement disorder
Guess I just got so many different disorders I tend to abbreviate that
and I dont have try and remember how to spell them correctly :-)
{think apena isn't right}
purrs,
Kat
Hi Wind, I play Blues,classic rock and courtry,
folk...A little of everything. Playing in front of a crowd
can be scary and wonderful. It really gets my blood
pumping, and i love it. My guitar is a Gibson flat-top 6
sting.<br
use of colors. I draw and paint sometimes but not as
often as I would like. Take care, Wayne37.
What is RLS,SA and PLMD sorry when you abbreviate it is hard to understand what you are saying as we have different ways of saying what is wrong over here. I cant put those letters to anything we know of here.
Jane, Peter's wife..........
Hi there waynewv37, I just looked at your photos
in the club and there cool! What kind of music do
you play with your guitar? Looks like a folk guitar?
I had one similar up until about a year ago....A
high school girl and I used to hide up in the choir
loft in my church back in Wisconsin and play our
guitars and sing duets, then some sundays we would do the
same at her church. In my chursch we tried to get the
first or second grade class to sing with us....I
thought that would have been awesome for mass at a
holliday, but it never got off the ground.<br
it feel like to sing and play in frount of a crowd
like you do?<br
I know that alot of PWN also have other sleep disorders. I am looking
for info about this. My situation for this is a JERK DOCTOR!! I have
had to find a "primary care" doctor again.... they always tell me I am
too complicated.....etc......long story if you don't know me....LOL!
Meanwhile, this Dr. Jerk has already made me have a MRI that I didn't
need, because he wouldn't listen to me, {I just live in this body....}
NOW he has DECIDED that there is NO WAY I can have N and RLS!!! So of
course what does he do??? Start digging into 25 years of history of my
Narcolepsy!
I am 46 years old and STILL defending that I have this disorder!!!
I also KNOW that I have RLS and it has gotten worse in the last
year....i.e. age, diabetes, neuropathy..... but he says no way can I
have both.
So I am looking for the most sound medical documentation to set his butt
straight! He walked into the exam room with his medical text book and
flashed it in front of me for 2 seconds to prove his point..... so I
want something from a doctor.
Anyone know of anything?
and just for my personal sanity, do any of the members of this group
have both N & RLS? I also have SA & PLMD, but he hasn't attacked those
yet! I am also looking for a new doctor.
Thanks,
Kat
Welcome to the club sqmole, rmichaeltwo,
wolfi3100, williampriday!!!! We hope you enjoy your stay and
feel free to post something about
yourself!!!<br
just recently the RT told me to keep the bottom strap somewhat snug and the
top one loose. that has helped me with soreness on the bridge of my nose.
I guess I'll have to email you because I'm clueless....LOL<br
Sorry Ray, I agree wholeheartedly with Dorla on
this.....and yes men in uniforms and SUITS...wow....I haven't
met a man yet who doesn't make a girl go weak in the
knees when they get all slicked up.....<br
one of my hubbies liked to dress up in a suit, but i
do have an awesome photo of my first husband in his
pharmacist uniform, an one of him in a white tux at his
daughters wedding. My second husband would not wear a suit
but made me happy letting me buy matching western
outfits and running around like twins with me in
public...sorry this month is "hubby nostalgia month" for
me.<br
your self?????? Now wait a minute!!!!! Dorla is right
again.....Ray votes AGAINST Ray don't count....its like a lady
in a beauty pagent...she walks around and show off
... then steps off the stage and sits down in the
judges box and gives her self a 10......ROFL<br
it looks like your voted to stay!!!! (unles we get
some LIGITIMATE votes to put up another sexie guy in
the club, or go back to our regular wonderful
photos)<br
Well the CPAP is doing a good job. So back to work next week.
I am having a problem with a sore bridge of my nose and some irratation under
my nose. Anyone else experience these problems at first? I have loosen the
straps but still seems pressure on the nose.
Debby
Hi, everyone.<br
fits her - there is no one classier than
her.<br
to groups has begun and is being done
alphabetically; two of my clubs that begin with A have already
been converted and this club is the third one on my
list of A clubs. After conversion, when you come to
the club, you will get a page telling you it's been
converted to a group and the link to the group. You won't
have to join, everything except photos will be moved
over and you can just log in, read messages, post, etc
etc.<br
me and I'll give you a thumbnail outline.<br
I'm old as Ray said and I've been medically
retired with copd for three years...Diabetic and had a
bout with kidney cancer..I hang around in disabled
clubs because of my daughter...I have three..She is the
middle child and disabled because of a car accident SCI
5-6 Soon to be 20 years in the chair..Got two
grandsons (21 and 18) From my first born and a
granddaughter one year old from my last born...Got a hubby of
41 years this month...I'm a bookkeeper by trade and
meat inspector..Now, I'm just a domestic
engineer..Raised as a southern Red Neck and been in Iowa 34 years.
I'm adicted to the puter and that about covers all of
me...Anymore about me you "just don't wanna know" lol.... Oh
and my sceen name has changed from dorla to
I got a call today from the disability department of my work. It seems my
claim is going to be denied, they say the Dr reports dont support a
disability. They have not gotten the final diagnosis and treatment one yet
but said they dont see how taking off on disability for a sleep study is
justified.
This is again one of those cases of people just dont understand how serious
and dangerous this condition can be unless they live through it. I really
get sick of decribing to people the symptoms that lead to the testing for
Sleep Apena and they respond i have that problem too. Couldn't you just get
more sleep and be better! They don't get it this is so different and
disability would have rather i stayed on the road driving to work risking
injury to myself and others and also let my job performance suffer due to
falling asleep or dozing out and possibly get suspended then consider this a
serious condition.
Well no matter the end result i knew this was possible I would have done the
samething and don't regret it.
Debby
lol....wellllll.....Since I did a couple years in
the AF I have to admit that a man in a uniform
certainly takes my eye...Same with parades...With Rays good
looks and wonderful personality...I think he should
just be the club mascot....I don't know of a finer or
more caring person than Ray..Oh BTW...Rays votes don't
count. Because that is like sitting on a jury if you
know the defendent. Can't think of the word to use..
AND he voted too many times anyhow...lol Dorla
Hi there
Welcome the world of cpap. There's a good website called Talkaboutsleep.com.
There's a live every night and lots of cpap/bipap users are there. I've
learned a lot from them. Everyone is very supportive and full of helpful
hints for us newbies.
Go to the website and check the chat schedule. You will be pleasantly
surprised at how many chats there are to help you.
I am not an advocate for this website and have nothing to gain except to help
someone who is frustrated with this confounded problem of getting used to the
equipment.
Regards,
vicki
I get a vote??? Good, I vote<br
Angela's pic, she's much better looking<br
pic and put up Angela's<br
there<br
display<br
Angela AND Ray and put Angela in front<br
of those cute gif files Angela has<br
the nays now outweigh the yays, so away we go...lol
What an adventure my CPAP was delivered as promised yesterday and i used it
for first time all nite solo lastnite. What an experience WOW.
Ok now HELP!!!!!!!
First annoying problem is what I think they refer to as the swivel atleast
thats what it works as. Its where the hose hooks up to the mask along it to
move side to side. is it suppose to fit tight or should you beable to hear
the air blow it doesnt really feel any air blowing out around it but sounds
like it is, pressure remains good tested by opening my mouth LOL.
Second problem every time I removed the mask i have to blow my nose is this
normal? Also expereinced some sneezing this morning and still have some
tickleing sensation in the nose is this normal and does it eventually stop?
When I wok up this morning One of the plugs had popped open have no idea how
but its the one to release the moisture build up if you have any. Anyways it
released the pressure and basically the mask was not doing its job. Can I
expect this kind of thing to happen on occasion? I would have thought it
should all be pretty secure after all the type of people needing it are
usually pretty restless sleepers though i dont recall being restless lastnite.
When you do have to get up in the middle of the night what do most of you do.
Do you tremove the mask totally or just unhook the tube? I think if you
remove the tube only it would be hard to breath if you dont atleast lift the
mask. I removed it headgear and all lastnite and its a royal pain when going
back to bed to readjust and put back on.
All in all a very very successful nite. I went right out as you all
promised, and remained out till mother nature called and then didnt want to
get up. My dogs are used to early moring potty anywhere from 5 am to 7am and
usually a whimper or a nudge wakes me well this morning it took a bark I mean
loud and several to get me to move. I hope thats good? That tells me I was
sound off to sleep.
Funny I am used to now when I say just a couple more hours in bed thats all i
can get but this morning when i did that it ended up to be another 4hrs oops
and dont think I would have waken then but I had sprung a leak.
Good thing my head is telling me too much time in bed.
I figure I would get some Sleep debt taken care of this weekend and next week
start a set sleep schedule of no more then 8hrs in bed I am shooting for 11pm
- 7am which is a good work schedule. However my problem is my Husband works
nites and if I dont work the next day I like to stay up with him.
Anyone else keep different hours occasionally and if so does it really screw
up the system that bad for you?
I know alot of this is subject to individual person but am interested to hear
how it works for each of you personally for a basis.
Now wish me luck real test can i stay awake all day with no nap, which is the
old me and wait for hubby who works midnight tonite and watch a movie without
dozing out?
I know it may take more then one night to get to that point but a gal can
hope can/t she.
Will report tomorrow on todays success or failures.
Debby
Good for you, Nanc.
Sue
We have a vote still going on for our new club
photo! Check out the original post # 770!!<br
Dorla, I would love your opinion on the photo
too...since Ray says he has known you a long time....should
the sexie Ray Photo go or stay???<br
have...2 handsomes...1 good...1 friendly...1 ok
looking...and 1 keep it but he is out of uniform (supposed to
be wearing those cute little scout shorts
LOL)<br
so far the club loves ya, don't even have one
negative vote yet LOL}<br
Yes, my welcomes also to Dorla and Crissy.
Dorla's and old friend so I don't need to ask her any
questions ( I don't mean she's a friend that's old, I mean
she's been a friend for a long time... so what if she's
old too!! LOL); anyway, Crissy, what are you studying
in school and what year are you in? Do you have
sci?<br
Hello fellow sleepy heads,
In a previous post I wrote, " Another
source of excellent information is Scoop. He has his own organization titled A.W.A.K.E.
Scoop is also one of the moderators on the sleep apnea chat."
Although I knew what I meant, my writing didn't convey the correct meaning. What I should have said is that Scoop is the leader in the Philadelphia area of an A.W.A.K.E group which is one of 200 local affiliates of the American Sleep Apnea Association. (A.W.A.K.E. stands for "Alert, Well, And Keeping Energetic.") For more information, take a look at the webpage of the American Sleep Apnea Association (ASAA) at this link: http://www.sleepapnea.org
Nancy Valencia
I see by our member count we have two new
members!!! Let me be the first to welcome you! I hope you
enjoy the club and don't be afraid to post something
about yourself!!!<br
check out the messages and photos if you
like.....:)<br
Thankyou for your prayers, and kind thoughts. My
oldest Brother Jimmy isn't doing very good....I guess I
have such a big mouth cause my family is so
secretive....according to the doctors he has about 5 months to live
maybe, they say they can't do anything more, but they
are still putting him through the Kemotherapy. He's
on Oxegen all the time and My mom is getting help
coming in because she is getting worm out trying to care
for him on her own....He is at my moms, he doesn't
want to die in a hospital. If the way they describe it
he is going through the same thing as my first
husband and if thats true...<br
past is in the past and heeled February shows up.
Sorry, I'm ok.<br
serious it was, the family kep it a secret as long as
they could, even from me....one good thing, his son
and him are spending time together. Grudges in the
past have been forgiven.<br
Which leads to the new "Question of the week" for you guys.
I grind my teeth. Always have. How many of us do grind our teeth? I wonder
if there's a link?
CV
Another club I'm in posted that the switchover
from clubs to groups is occurring now, and is being
done alphabetically. One of my clubs begins with the
word "A" and it changed this morning. So I would
expect this club to get switched pretty soon. I don't
like the group format, but we have no control over
this, so we'll just accept it and make it work.<br
a good day, everyone. Karen, you are in my thoughts
and prayers. Keep us posted.
I have you both in my thoughts, Karen.<br
Karen needs our prayers, for those that are so inclined. She just learned about
a brother who is seriously ill. Keep him AND her in your thoughts, gang.<br
Oh that's great Debby, hope you start getting some good nights rest!
Debbie
Well i got the final diagnosis of my sleep study today. I don't have N but i
do have Sleep Apena bad enough to need the CPAP which my Doctor has ordered
so i should get it setup sometime next week.
I have really been lucky i guess compared to someone I have been tested and
diagnosised within three weeks, all the doctors were really great and the
sleep lab Tech too.
I am planning to try the CPAP for a week to besure I am ready for work before
going back.
Can anyone tell me when you first got the CPAP, how many nites of good sleep
did it take before you felt like the living again so to speak? Did you sleep
solid from first nite on or did it take awhile?
I couldnt have gotten through these weeks without all of you I am so glad i
found this list to help.
Debby
That is great Clynch and good for your wife too. Being a souse of a sleep
disorder patient mustin be easy i know my Husband is having alot of worry
filled nights due to it.
I dont get it why is it so darn difficult to get a sleep test done and get
help its not like research and sleep disorders is that new is it?
My Lab tech keeps telling me how lucky I am that they are moving as fast as
they are it usually takes 6wks just to get tested, why? As for your average
Doctor i think they are totally in the dark about sleep disorders, what they
are and how to treat them. It really is a shame since with some patients it
can be very dangerous and sometimes life threatening condition if not treated.
I am reallly getting tired of expampleing to friends and family about my
condition and what happens to me because of t it and have them all respond Oh
that happens to me too or i do that too like its nothing PLEASE you just dont
know what its like until you live with it.
They also dont take it seriously like i making a big thing out of nothing and
its all in my head blahh blahh.
Right I love living my life in the sleeping position and not being able to
watch a movie, a love of my life without falling asleep or blacking out if I
fight it to long.
My husvand was ragging on me the other day of why this anbd why that about
why i cant get the CPAP till all the papperwork goes through and they already
have a push on it i saw to that. Finally I total him to stop yelling at me
its not my fault if i could have one now i would. The thought of going to
bed and not getting up for hours and maybe not at all in the middle of the
night is a dream to me.
Lastnite I had two hour segments of sleep then up and i feel much better
today with just that more awake and energy so I am grateful for that nites
sleep the evety hour on the hour nites up are tough on the next day.
Another thing I cant get used to is being up and on the road doing errands so
early in the morning.Today I stopped at Mcdonalds for frenc fries didnt check
the time here they are still serving breakfast geez bummer. Last week i had
tp wait in the car for a half hour for the library to open. Now mind you
befor e this onset of sleep trouble i was never out before 11 am most time
noon.
Well hang in the Clynch help for both of us is right around the corner
now!!!!!!
Debby
The sleep clinic called yesterday!
To review, My primary physician referred me, reluctantly, to the pulmonary
doc. The pulmonary doc said a previous test showed no apnea at all. He
checked me over, talked for 45 minutes and referred me to the sleep clinic.
The sleep clinic had about 20 pages of forms, mostly questions to fill out.
There was a section for spouses to fill out, asking questions (yes/no) and
then asked for an explanation of the answers. My wife looked at it and said,
"5 lines isn't enough". She filled 3 sides of 8.5X11" paper and we attached
it.
I faxed it in. The technician called yesterday. He said they normally
schedule a consultation with the doctor, then a test, then another meeting
with the doc. But after the doc read my questionnaire, especially the part
written by my wife, he told the tech to skip the consultation and contact me
for the overnight test AND THE MSLT!!!!!
The Doc says there is guaranteed some sort of sleep disorder, but the Tech
couldn't tell me any more than that.
I'm going in on the 24th for the overnight, then the 25th daytime for the
MSLT!!!!
Thank you, God! You are great and awesome!
Clynch
Don't know. Mine says C is any muscular weakness that occurs suddenly,
whether you're conscious or not.
He also says it usually follows strong emotion, but not always.
CV
Can anyone tell me where "sleep doctors" go to be called sleep
doctors? I mean every time I talk to mine, he thinks Cataplexy is
falling asleep after being emotional. I don't know about you, but
when C happens, I am wide awake and completly aware of the situation.
Then I read in another posting list that people are referring to C as
falling asleep after being emotional. Obviously getting their info
from their doctor.
-Andy
dump it and put up one of the beautiful founder in one of her sexy outfits...
that'll draw a bigger crowd.<br
hahahahaha, yeah, right!! Me in shorts?? No way!
I've been in scouts for about 17 years now and NEVER
wore the uniform shorts. I also don't care much for
the camping side of it, so when my kids left scouts
years ago, I no longer had to drag my butt out to the
wide-open spaces. I much prefer the 'behind the scenes'
work and let the leaders who like the great outdoors
handle all the "fun" stuff with the boys.<br
pack/troop/group were you affiliated with and when?<br
Disregard the prev. msg as we seem to have solved our problem
Hi gang it's sleepy from south aussie(australia), i dont seem to be
getting any messages
Hi to all...I am a friend of the Wind,and she
asked for my imput...Nice pic...keep it....but as an
ex-scout,why is Ray not in shorts with the socks?And where is
his neckerchief with the hand carved holder?..I am a
purist but it is a good pic...I understand you lady's
love men in uniform?
Hi there, hewre is the original post made by
angela our founder on the Vote!<br
THOUGHT YOU WOULD ALL LOVE TO SEE OUR CO-FOUNDER RAY..
POSING IN THAT SEXY UNIFORM!<br
BEAUTIFUL??<br
HOT LOOK OF RAY..<br
IT'S YOUR OPINIONS THAT COUNT!<br
<br
friendly and ok, looking...4 votes to keep it! 0 to dump
it!<br
I had been doing so good staying upbeat and working with this sleeping Apena
i have been saddled with until today.
It is into the third week now, guilt feelings of being off work so long are
being to overwell me. Though they are not bothering me nor saying anything
negative i being the bread winner of the household worry a great deal in
keeping my employer happy.
My work performance was suffering is the reason i went on disability when i
did so its like a no win situation till I get my help with the possible N and
Sleep Apena I have.
Yesterday was aweful i was a sleep most of the day off and on a real royal
waste. Then lastnite up every hour on the hour till i could no longer stand
to lay in bed though still groggy and tired my body said no more laying down
for awhile.
Top it off the weather here is the worst its rainy and cold!!!!!!!!
Can anyone share with me when they first started doctoring for their sleep
disorder, did you take off work till it got stabalized and if so how long? I
have never been a type of person to dwell on any illness, I take care of it
and get it over with quick and back to life, but this hanging out waiting for
3 wks now is killing me.
Debby
Hi Merry,
I loved your suggestions about meals. I'm really bad about skipping meals
now that the kids are all grown. I will just grab the nearest thing handy and
call it a meal and I know that isn't giving me the nutrition I need. I
believe I could definitely handle cooking some double meals and having plenty
to freeze.
Now, it will be trial and error to figure out how long to cook these.
lol..Thanks for a great suggestion. Marilyn
Would have liked to chat with you guys but it was way too late for me! (4.30am
my time!) Maybe you could have a daytime chat sometime then I could join in and
meet more of you!<br
Thanks Marry for the tip, I think i will
go get some of those containers soon, this
meal planning thing is really what i need.
the weekends i have the time to cook so should
do it then. I am a single mom, but only have
one so this isn't so difficult as those with
more children. More than anything I feel
blessed to have a child and am grateful
i am not in a wheelchair or something else.
sometimes i have to remind myself to put
things in perspective.
Take care
Stacy
Sorry for the late vote, but I only just saw the
new pic there....<br
wouldn't call him hot or sexy....but do keep the pic up
there...! Like the uniform though Ray - know anyone you
could fix me up with? <wink><br
so I do go for the younger man! (The younger, very
hot and sexy Candadian man, to be more
precise!)<br
RAY WHAT DID YOU WRITE??? I COULDNT SEE THE SMALL PRINT VERY WELL!! LOL TAKE
CARE. ANGELA<br
come on in
Thank you for the kind comments about the club
pic; I appreciate them. I don't know that I've ever
been referred to as, nor do I think I qualify as,
"sexy", but Angela IS getting older and can't see as well
as she used to, so I'll let that go as
unavoidable....lol<br
Hello everyone, I mostly lurk, but thought I might share one of my old
coping tricks. On my days off I would usually try to put together decent
meals, so I would always make extra. Double chili, spagetti sauce, stew.
Two meat loafs, roasts or cassaroles instead of one. Split into portion
size and freeze - put meals together into those small divided containers.
Ta Da - nutritious, cheap and easy TV dinners ready for the microwave. My
heart goes out to all of you with still small children, especially the
single parents. And thankful I am that my boys are now old enough (12,14,17
& 19) to share the cooking and other chores that are so often beyond my
capabilities. Hope this helps someone get through another day and dealing
with N. Love Merry
Ray looks very handsome. And also very friendly! I think the photo should
stay.
For whatever reason the Cpap didn't work for me..I think because my sleep
apnea isn't very severe. My dr is going to refer me to a dentist for some
sort of dental device. I hope that will help me. They said that I had 36
arousals per hr and from the total amount 78 were due to sleep apnea. So I
wonder if anything I use is going to make much of a difference.
I think in Debby's case the Cpap will be a life saver. I've heard from many
people and they say it's changed their lives and they won't go anywhere
without it. I hope that she can get one soon.
Debbie
Mine (they are called a "splint") was made by an orthodontist and fit my
teeth perfectly -- it also gave me a neutral bite so my teeth would stop
wandering around looking for a good place to rest (I've since had surgery and
braces). It was covered by medical insurance under the diagnosis of TMJ
(which I did have). Because of the TMJ I had to wear it during the day for a
few weeks as well, so that sleeping in it wasn't a big shock to my mouth.
Once you've got the apnea under control, you might want to consider finding
an orthodontist who can make a splint that works for you.
Good luck with insurance. And maybe you could inquire how much it would cost
to rent the CPAP machine while you are waiting for insurance approval?
Leslie
IT'S A GOOD PIC USE IT....THANKS WAYNE
I vote To Keep it!!! He is one handsome dude!!! Looks like he is modeling the
spring line of scouts unifoirms!!! I vote to keep it!<br
Did you go to my preferences and then email accounts and edit? You can add
another email and then remove your other email address.
EVERYONE..I THOUGHT YOU WOULD ALL LOVE TO SEE OUR
CO-FOUNDER RAY.. POSING IN THAT SEXY UNIFORM!<br
JUST BEAUTIFUL??<br
TAKING OPINIONS ON THE HOT LOOK OF RAY..<br
KEEP IT OR DUMP IT?? IT'S YOUR OPINIONS THAT
COUNT!<br
Hi its peter here, I'm wanting to change the email address where my
msgs go fromt he group. I have tried several times but it still comes
to my hotmail one. can someone please tell me how to change it
Thankyou in advance
Oh Thank God!! You couldnt have gave us any
better news than that!! Bless Her little Baby Boy!!
Thank you again to all that helped.<br
the club is really about.<br
man/woman!! Even if you dont know them! I am so proud of
everyone that helped her out with prayer and support.
<br
out Angelface..! you take care angelface may God
watch over you and your family! Keep everyone happy and
healthy.<br
Hi there....Angela made me do it LOLOLOL ...Go
check out the default album too I have a photo of my
meeting with our cofounder. He was visiting the same time
I received my first Bonus check from my business!
Thanks for everyone who was so sweet, Angelface
had her sonagram and everything Looks normal! She is
going to have a little boy!!!! The tech talked to her
and her levels were elevated because of having one SB
child already, but not because she was going to have
another one, she said our support was very
touching....our prayers comforted her and reading up on the SB
links that Angela gave me helped...and all the careing
and words of others with SB helped alot...she stopped
crying and had hope when she went to the doctor, it was
a rough day for her yesterday but the caring she
felt by people she didn't know but who have had
similar things happen to them helped her alot and she
sents out warm thanks to everyone!!!<br
she's certainly in MY prayers also.<br
already. I think she's a great source of info on sb.<br
Dear Debby,
I too have severe osa along with a dx for N. I have some very very helpful
hints for you concerning the insurance companies. Unfortunately, they are
so amazing that putting them down here for the whole world to see is kind of
diff to do.
If you are interested, email me privately or if you wish, I will call you
directly via telephone. These tips are great. Suffice to say that when my
bipap arrived, I made the decision that they were very bad, so I decided to
make them pay for the most expensive newest mask available. So, in 3 days
from the date of my request via my pcp, I have an authorization number for
the new tiny little mask that I'm just dying to try. How's that for quick.
btw, if you live anywhere near me, you can borrow my cpap if you want. Let
me know.
Amazing how you took to it right away. I had to be switched to bipap because
I yap all night long. Just can't seem to shut up even in my sleep, lol.
Good luck,
Vicki
Well I did it , the test went very very well. I went in Thursday nite and
had to stay till 4pm on Friday.
I have to wait for the Docitor to read the test and give the final diagnosis
but the gal did tell me what she observed for sure.
When they put me down to go to sleep the first time, after hooking me up like
Frankenstein all those wires and not so comfortable. Well not 30 min into
the test the gal came in and was setting up the Humidifier and a CPAP for me.
In that time I had talked, kicked my legs around, snored(real bad) nocked
off the little sensor reader they put on your finger and generally mad a mess
out of the bed. As soon as I went into the first stage of sleep I had sleep
Apenas start, my breathing was horrible, dangerously low oxygen level bad
Sleep Apenas they knew I had from that point 30min in. They applied the CPAP
I went to sleep and the next thing I knew the day shift was waking me up. I
slept the rest of the nite never waking and my reading was smooth sailing and
peaceful. So we now that I never leave stage one or two of sleep because of
the Apena so I have been living Sleep deprived so to speak, causing
unbelievable problems both physically and mental. According what this gal
says and it makes sense that not sleeping restfully effects all parts of
your health including the Immune system Weird. My level can also mimic
Narcolepsy because the symptoms are similiar, faling asleep on the spot, and
in unappropriate time etc. Big difference is the cause of a onset of the
symptoms Apena takes a physical change to make it happen and Narcolepsy can
onset by an extreme emotional event.
So for this reason and a couple other unanswered symptoms I experienced they
did the Narcolepsy test too. For that I have to wait for doctors reading,
but Kelly said i could have a combination.
If just the Apena the CPAP is the cure of getting the sleep true sleep and
everything else follows, more energy, staying awake and feeling better in
general.
You know the pisser part i have to wait for my request for a CPAP unit to go
through the insurance and be approved before I get one till then I am back on
my own.
Talk about a tease that sleep I had with it on Thursday was so great and felt
better then anything ever has,(even sex LOL) waiting is depressing. Lastnite
I didnt even want to go to bed and fight and struggle but of course
eventually I had to and after a whole hour and half in bed here I am up at
the computer, this sucks when help and cure for me is at my finger tips but
I'll play the game for I know relief is not far away.
So thats the scoop I performed beautifully and a serious life altering
problem was detected so I am very relieved and actually happy, strange huh.
Debby
Please pray for my friend Angelface. (Not our
founder) She is going in for a Sonagram tomorrow....she is
kind of scared....she has one child with Spina Bifida,
and doesn't know if this new pregnancy...is normal or
not....<br
Yeah wind....cool chats yesterday!<br
Hi There everyone!!! I'm going to be taking a
break soon, so I'll be in the chat room right here in 2
hours....that will be 1pm Eastern time zone.....then since I
hate cleaning and job hunting, I'll be back in tonight
at 6pm Eastern again!!! I hope I got to meet a few
of you and even if you can only drop in and say hi
pop in!!!<br
good Sunday!<br
My cat always sleeps plastered against my side, so when I went for my sleep
study, I brought a stuffed animal (a "baby gorilla", actually) to put in my
armpit where the cat usually goes. I also brought my pillows (as I use a
buckwheat pillow under my head and I sleep with a thin pillow between my
knees). The tech. took it all in stride. She was amazed in the morning that
the pillow was still between my knees. She also told me that she'd look in
and see the gorilla and think I really did have a cat in there...
As for the "embarrassing" stuff -- this is the kind of things you *want* to
have happen so the Dr. can see what really goes on. I was worried I wouldn't
do anything odd while I was sleeping...
Good luck,
Leslie G.
Debby, I was really nervous when I went for my first sleep test too. But I
felt very comfortable there. I had a tv and the room was nice and quiet.
If I needed to go to the bathroom I just said it aloud and they would come
in and get me. The are very understanding and see people who are much worse
than you. So don't worry. It's a breeze.
Debbie
Wow, Thank you, Angela! Thats nice of you to say!
I'm glad you like them so much....ummm, sorry to
disappoint you...but dabble is all I do....I would have no
Idea at all what to charge people....I use my
paintings as gifts because I seldom have money to buy
anything. I always saw fancy paintings in nice homes, and
and painted my own...lol....<br
paintings I posted are already gone! I met our co-founder
Ray, before Christmas and he got the first one....Then
I met an online friend in January and she the other
one....why don't we meet and I'll bring you one
too???<br
meet someone you give them something....but I'm
getting smarter....I photograph everything I paint
now....I wish I had a picture of everything I gave
away....lol...I think I'll post some of the older ones maybe, I
just don't know how much can be posted without taking
up too much room, so let me know if i get too many
in there ok?<br
Oh my wind...I just looked at your paintings!!
They took my breath away!! They are sooo beautiful!!
What wonderful use of colors!! I love the sailing and
fall and..oh darn it ALL OF THEM!<br
of them?? And don't tell me you just dabble!! I
would love to dabble like that!<br
talent,Please keep posting some of your paintings..They're
breathtaking!!<br
bring the house down with your band! It looks like you
really do love playing music. And you have a nice
looking family too!!<br
has some great talents in here..Keep up the good work
everyone..Sorry I missed the chat..Please wind post when you
think your going to do that or mail me at
Wheelsgrl2@... I always check my mail. I know its hard and you
do it the last min..but just drop me a line k? I
would love to try to make it in..just to say HI to all
!!<br
Thanks I think we had a nice chat tonight, I'll
try to post a little more in advance If I'm going to
be in the chat room in case more want to drop in
:)....I don't always know what I'm doing until I'm about
to do it LOL....anyone else have that
trouble?<br
Tomorrow is the big day. Finally i go in tomorrow night at 10:30pm to do my
sleep study. I am not really concern anymore that the test wont show a
problem, after talking to all of you, and as I told my Doctor Monday when i
went in for a check all symptoms I am suffeing from point to N for sure and
even if it isnt N I know it will show a sleep disorder of some sort.
Truth I am scared as hell to stay overnite away from home, I know really
stupid a 42 yr old married for 20yrs and afraid to spend the nite away from
home, but I am.
So much so I have been sick to my stomach the past three days closer it gets
the sicker i feel. Not only will I miss all my babies, the dogs,cats and new
Guinea Pigs but if i do the things in my sleep my husband has witnessed it is
going to be embarrassing. Screaming out, moving my arms and legs around up
and down, and if they have you all hooked up how do I go to the potty in the
middle of the night.
See told you acting like a baby but i cant help it. What if i am so nervous
I cant sleep has that ever happen to anyone while being tested?
I know Andy use the imagines in my mind of good things and put myself in my
mind in a comfortable happy place with all my animals, no place is happy
without them not even overnite. I will try that trick though Andy if it gets
that uncomfortable, I too try to look at the humor and advantages of N
instead of negatives.
Like lastnight after 20yrs of fighting with my hubby about when i am trying
to sleep noises and any kind of light wakes me up and keeps me up. Now with
N he can do his music stuff on the computer in the room next to my bedroom
lights on all over the house and I have no trouble going to sleep and staying
as much as N permits.
So N has taken a big issue causing fights problem out of our lives and
marriage.
Of course the increase loud snoring and screaming out and fling arms and legs
has driven us to separate beds and separate floors he sleeps upstairs me
downstairs.
We have adjusted to that ok though we arenyt newlyweds if you know what i
mean.
Wish me luck and bravery for tomorrow nite gang this is it step 1 finally
started.
Debby
I'm heading there now...!
I like them, I only just noticed someone had posted pics recently, so I checked
them out...I guess I should post one or two of myself huh?<br
Seems I read that Carbs increase seratonin in the brain, and since we have
too much already....ZZZZzzzzzz........... ???
Hi there I'm heading to the chat room in about 10 minutes if anyone would care
to dsrop by and say hi, please do! (6:15 Eastern)<br
Debby
The hardest time for me to sleep is at night!
STacy
Debby, I envy you being able to foster animals. I am an animal lover too.
I have one cat, she is 16 and I've had her since she was a kitten.
I would like to get my kids a dog, (they keep asking me), but I think it's a
bit too much to take on right now. I'm just buying my first house and
finding there is alot more to do since I'm not renting. But it is worth it.
I'm glad to hear you got some sleep and have fun with the new guinea pigs!
Debbie
PLEASE FORGIVE THE OVERSIGHT, TAKE CARE WAYNE
Well lastnite i slept like a baby after being up the whole nite before from
being excited over my new adventure of guinea Pig fostering.
I slept a record breaking 4 hours strait without waking up after which up
every hour but 4 hours is a record usually 2 hours max at a time.
Hay the way i am going to look at N is if coping with it is the best i can
hope for in the rest of my life then so be it. I started a new leaf a year
ago to try to see the bright side of everything instead of negative like I
had my whole life and found myself miserable.
Since I changed and looked for the good and positives even in a inconvient
oain in the rear condition like N I have been a much happier and stressfree
person.
Another advantage of N for me has been most days i wake with more energy and
do more because I know once I stop thats it. Eventually the N wins and a nap
is needed but still I do more activity when up. Before my handicapping onset
of N I was plain lazy sat on couch all day long on days off if I could afford
it.
There are days it catchs up to me and I awake tired and stay that way all day
thats the multiple multiple nap days and only do what I absolutely have to,
feed everyone let dogs out etc.
I am sure going back to work will put another challenge on me but by then i
will be on meds that will assist me right now I am still solo on my own till
official diagnosis.
So for those having trouble with depression been there done that. Please try
to look at bright things in your life start out slow easy like be thankful
you woke up another day and look for others things even the smallest
microscopic things in your life that you get pleasure from and are happy
about and concentrate on that. If you keep with it eventually it will be
natural it took a good 6mths of hard concentration before it got easier and
now a year later well you see Its become a way of life for me.
Yes I can still get down everyone does and angery but I dont dwell on the
down like i use to and it leaves quicker and the anger part. I found a good
brisk cold fresh air and abit of pacing sometimes a very very loud scream
will shake it off, so when I come back it the anger stays outside. All I can
say is try it it cant hurt if your always depressed you have nothing to lose
by trying.
Hope this in return helps someon of you since you have been so helpful with
info to me on N.
Debby
Yes he has a new car now....it's running pretty
good he says....about the engine fire, did he ever
tell you that his cousin tried to light a cigarette
while he was by the engine and almost killed himself?
Hummmm......!<br
wants to meet me (and you!) - I'm more interested in
the road trip...ok, I am quite interested in meeting
him too! He's been asking if we've started planning
anything yet.<br
completely! ;-)<br
Thanks Vicki, I find the weekends the hardest because I do not have a
routine like I do Monday - Friday.
Debbie
Dear Debbie,
You are not alone with this weird disorder.
Email me privately if you want someone to talk to on the telephone. I am sure
I can give you some helpful hints. I too have osa and n like you do and some
other sleep disorders.
regards,
Vicki
Hi Wayne, nice to meet you! I don't have any SCI,
but I'm sure there are others in the club here who
would love to make contact.<br
that I like your profile and especially your quote,
although I would substitute the word 'life' for
'love'!<br
I was just wondering if any of you get really depressed due to your
sleep disorder. I have always had depression but since I've had this
sleep disorder I get very depressed and I'm not sure how to handle it.
Thanks,
Debbie
I am discontinuing my use of the cpap for my mild sleep apnea. I dr.
is referring me to a dentist to see if a dental device would help me
better.
She is also looking into something different to help me at night with
my arousals. I am taking Zoloft right now but it is not helping much.
Debbie
HI...I WOULD LIKE TO MEET OTHER SCI FOLKS, I KNOW YOUR OUT THERE. IM 37 WHITE
MALE T-12 PARA<br
Debby,
You are not alone. I have had these sorts of dreams all my life. They are
generally considered a symptom of N.
I have fought with my wife over something she said and she has burst into
tears because she never said it. Because it was a dream I had that I
remembered and didn't know it wasn't real.
I have had dreams where she leaves me, and I wake myself up sobbing, and if
she happened to be out of bed it really freaks me out.
Yep. I know just how you feel.
As for the food thing, I would suspect that it is related to the meds.
CV
I will be off-line until next Friday, as I am going on a trip. So, don't
panic if you don't hear from me.
CV
Debby: I, too, occasionaly have trouble falling asleep. My hubby and
I are in the process of buying our first house and quite often lately
I find myself unable to go to sleep because my brain is just churning
with excitement. You wouldn't believe the laughs I get when I tell
people I had insomnia the night before "You, of all people! couldn't
fall asleep".
I'm glad the group is helping you - I, too, found this site very
helpful in my infant stages of dealing with n. Even today, I still
learn things from the postings.
Best of luck,
Erica
Debby:
I'm no doctor, but what you're describing in regards to your dreams
is another manifestation of narcolepsy - Hypnagogic Hallucinations.
In a "patient-education" brochure addressing n., HH is defined
as "vivid dreamlike experiences that are difficult to distinguish
from realty. The dream is often like a nightmare, involving images or
sounds of strange animals or prowlers. These dreams are particularly
frightening because the person is awake and has no control over the
actions. The dreams are also disturbing because they can be mistaken
for the hallucinations or delusions of mental illness".
I picked up this brochure at my sleep specialist's office but if you
would like a copy, I'd be happy to mail one off to you. I keep
several as my friends and employers have had trouble understanding
what exactly is wrong with me. Giving them this brochure has helped
immensely.
As for diet, I have found I need to watch what I eat as well. I try
to stick to healthier foods and those that will increase my energy.
I'm not a big meat eater so I take a protein supplement purchased at
a nutrition/body builder's store.
Another issue I have had is that, though hungry, as soon as I heat up
my lunch, the first bite turns my stomach (I believe this is due to
my meds). I know I need to eat to keep fuel in my body but it's hard
to do when it nauseates you.
Hope this helps! If you want that brochure, you can email your
address privately and I'll snail mail it to you.
Erica
With this onset of N condition do any of you every have trouble falling
asleep. I dont mean due to the drugs used to keep us awake, but due to being
overly excited about something that is going to happen the next day?
Since i was never fortunate to have children, I have focused on my love of
animals for my maturnal satisfaction they are my babies.
To do this I have fostered dogs for several years. You have them for awhile
till they find permanent homes then you get a new one so I always have a baby
thats needs me in some way may it be attention, medical or some teaching.
Anyway i decided to expand and also foster guinea pigs, I know strange who
would think of a guinea pig homeless but there are alot of them.
So today i go to get my first foster Buster, and I am so excited more then a
little kid on christmas morning I swear, thats how much i love animals.
Fostering also gives me a chance to have and live with an animal I have
always liked such as diffeent breeds of dogs I did Bassets but am currently
with Shelties, and guinea pigs have always intrigued me and i have wanted to
try owning one.
Anyway thats off the subject point is when i laid down many times during the
nite after being up I had a hard time going to sleep, first time in two
months. It was actually frustrating, go figure never happy. Lastnite I
counldnt sleep and I am upset and when I cant stay awake I am frustrated LOL.
So does this happen under those circumstances?
Debby
Hi Angela, I don't think I've 'met' you, but you
have a wonderful club here. And HI to the newer
members too!<br
messages and it seems you've had more problems than I
would ever want. But you always bounce back, and I
admire that.<br
I can't claim to be a first-hand expert on SCI but
maybe general disability issues.<br
thought I'd say an official hello, and it's nice to see
my name in your post up there (I think?) along with
Wind, Ray and yours, Angela!<br
Hi wind..Hope your feeling better!! sorry you
dont feel good! I'm glad that you love the new pic,
How about a new one? Making you all warm and wishing
we all were there? This one is for you! And welcome
to all the newcomers to the club! As wind said,
Please feel free to post any message here. And if there
is a question about anything and about sci stuff. We
will try our best to answer them. OK? <br
you all !<br
Thanks Ceri for confirming what part of N and that it is part of N Nightmares
and oh too real dreams are.
I really am glad I signed on to this list so many have helped already in my
short time.
The dream part indicates even more to me that I have always had symptoms of N
but they just weren't so handicapping as they have become in past several
months.
I remember one time dreaming about having a good drag down fight with my
husband, it was so real and mad me so amd(whatever the fight was) that the
next day I wasn't talking to him, giving him the cold shoulder you know all
the after fight things and he couldn't figure out why poor guy. Finally
after yelling it out I discovered I had dreamnt the fight and it wasnt real,
then we had a good laugh.
The feeling of having gotten up to do something, but still really be in bed I
have had that to more then once.
One conclusive example that left evidence, OK men on the list close your ears.
Anyway I had to go to the bathroom and I thought I had gotten up but instead
I ended up peeing in the bed, GROSS.
Lastnites nightmare happened and woke me after just 30min out. I haven't had
such a bad one in a while thank god so bad I woke up hard to breath it upset
me so.
Since lately while really awake I have been doing things and forgetting or
not realizing I have done them that it took a few minutes for me to realize
lastnites was a nitemare and not something I was just remembering happened.
It doesn't seem or I just remember them that I always dream though.
Debby
I have been having more nightmares lately then I ever have. I just had one
that scared me so bad i screamed out in my sleep and thats what woke me. I
remember the dream almost like it really happened. This is not the first or
second I have had several since suffering from this sleep disorder.
Does anyone else has this problem? Is nightmares a part of N or is it just
since i have been sleeping more andf had more chance to dream nightmares are
my choice?
Do any of you ever get dreams and what is real mixed up like wake up and
think what you have dreamnt is really something that has really happen or
changed in your life?
Also since I am home basically 24/7 i have gotten in a habit of eating
everything and anything and eating alot, especially addicted to Diet
Caffeniene Free cola I am never without even in the middle of the night.
Does anyone else have this problem?
Also with N is there certain foods I should avoid?
Debby
The wind's very noisy here LOL....I'm sitting here listening to it blowing
through the trees...<wink><br
Clynch...Whatever it takes to get the help you need. You must belong to an
HMO. Not having the restrictions of having to jump through insurance company
hoops to get to a specialist has been a boon for me. Unlike many of you, I
was very lucky with the doctor I happened to get my first appointment with at
a clinic of 10 physicians. I went because I fell asleep on my feet at work
and was thinking I was having blood sugar or other metabolic problems. This
doctor recognized the symptoms and we went from there, through tests to
eliminate other possibilities. I had no knowledge of N. at the time so his
diagnosis was hard for me to accept. But after all the lab tests supported
his suspicions, he was willing to go ahead and treat me for N. He said that
if we can find a treatment that works, it doesn't really matter what we call
it! I told him up front that I couldn't afford a sleep test since my
insurance has such a high deductible that even if it would cover it, I'd
still end up paying for most of it out of pocket. He accepted that, and only
held the sleep test over my head when the meds he tried first didn't help.
Since the Ritalin is working with no side effects, at least enough to keep me
awake at work, and the C. has become sufficiently recognizable to confirm N.,
I'm getting the treatment I need without having to go through all that you
are. Having read many such stories, I'm very thankful that I connected with
a knowledgeable doctor from the very beginning!
For S.Sanders...my doctor asked me many questions about my symptoms when
I first went to see him, and ruled out hypoglycemia from my answers, although
we went ahead and did the lab work to verify his deductions. Your first
specialist may have felt he could learn more about your condition by asking
questions than he would with routine tests, but he lacked the personal
sensitivity to understand that you needed the reassurance they would bring
and to make you feel like he knew what he was doing. You did the right thing
by asking for someone you could feel comfortable with. Personality can be as
important as training. You raised a lot of questions in your post, and I'd
like to address more of them in the next few days...in the spirit of sharing
experiences. But this is getting long enough for one day! Glenda
Hey, everyone. Results from the doctor appointment:
Turns out I was seeing a quasi-sleep doctor. He's a pulmonary specialist and
only deals with breathing disorders, of which Apnea is one.
He knows a lot about sleep disorders, but doesn't deal with any except
apnea. Since the breathing test machine I had used indicated that I don't
have severe or even moderate apnea, he can't do much for me. We talked for
about 45 mins (my wife was there, too, bless her heart! She was a great
help!) and discussed various symptoms, etc.
He said I have symptoms of apnea and doesn't understand why it didn't show.
However, he's very sure that I have "mild to moderate" Narcolepsy. The
reason I was sent to him is that the insurance plan doesn't cover real sleep
doctors, and the only way to get to one is through this doctor.
Overall the appointment was a smashing success, in that he said he cannot
help me, but will give me a referral to a sleep expert at a hospital about 3
miles from my house (they have a sleep clinic and everything)!
They are supposed to contact me next week and set up an appointment! The doc
I saw yesterday really thinks that they'll give me a successful diagnosis of
N after the sleep lab and MSLT. He is going to strongly recommend that the
real sleep doctor give both tests.
Happy news!!!
Clynch
Clynch, I know the feeling about the insurance they can be real pain in the
butts now a days acting more like doctors then insurance compqanies.
Anyway reading your post sounds like you are happy to be assured of being
diagnosised with narcolepsy.
It may sound strange to those of you that have suffered with Narcolepsy for
some time but I too hope for a positive diagnosis. One of my fears with
waiting for the test till next week is that it will all come back fine and
they will find nothing woring with me. Then what the symptoms I have are
impossible atleast for me to fake, falling asleep on a dime and frequently.
They are very real and I have managed in the past two weeks after finally
accepting i had a problem learn to work with it enough to manage reasonable
well, doing what i need to do but answering to my sleep disorders demands
also. That is of course minus work on my on disability till further
determination of the problem is known.
So far i can still drive but only around town so that when I get light headed
and tired I can get home and off the road. Untill treated I think thats the
most I can hope for long drives are out.
I dont know if anyone can relate or maybe this might help some suffering from
Blackouts. But since I havr given into the problem and take naps when my
body clearly demands it i have not had a Blackout. I think fighting to stay
awake caused mine.
Next Thursday night is the big day an overnite test. Funny I am nervous
about staying overnite away from home, boy some adult LOL
Debby
I'm just sitting here by the firs, watching the snow fall out your window, Ray,
Angella, and Brig....getting over my Larengitis so your in luck...I can't talk
very good (wink)<br
Yep, that's me, too. I hate taking naps. If I can nap for 15-20 mins, I'm
usually OK, but not always. Sometimes even after only 15 mins I'm groggy and
it takes an hour to wake up.
CV
As for naps, they never worked for me. I avoid naps (unless it's unavoidab=
le
due to a sleep attack) because I usually felt worse afterward. If I happen=
to feel a little better, I would need at least 30-60 minuets to feel totall=
y
awake.
So, instead of napping I take a quiet time. I sit or lay down in a quiet r=
oom
and read, watch tv or just chill out for an hour. I also have a little sna=
ck,
the fuel from the snack helps perk me up.
------
I like the pic too... Angela's got some cool gif files!<br
Brig!
....but I like the snowing pic on the front page....!<br
having a good week so far...<br
thanks for the info. on dexedrine. I know
that being worn out at the end of the day is
from coming off the dexedrine, and that is
exactly why i try not to take it during the
day. That way, by the time the effects wear off,
i am ready for bed and so don't suffer the
fatigue of coming off it. i have tried several
other meds however and so far the dexedrine is
the best. when i first began trying medications,
I thought i would find the perfect one that worked
and didn't have a bunch of side effects, but i'm
beginning to understand there is no perfect med that
will help relieve my symptoms and not bring me down
with side effects. so i am sticking with the dexedrine
for now. actually, i take only half of what is prescribed,
and sometimes not that much so i don't worry about
becoming addicted or needing more and more.
As far as your inquiry about work, i work at a
community mental health organization as a therapist.
luckily, we are used to working with folks with
disabilities, mental and physical so the atmosphere here
is one of acceptance and making things work for
people like me. this view of clients spills over to
employees. We are non for profit as well which helps
the situation. so basically, my work environment is
condusive to having narcolepsy. i am very lucky this
way. i feel sure i would have lost my job a long time
ago had i been working elsewhere. maybe you could search
for a similar working environment.
good luck with the classes, i think working out of the
home would be an ideal situation.
take care,
stacy
Stacy,
I use to take Dexedrine a couple of years ago. At first I took a 5mg table=
t
every A.M. along with three 37.5mg Cylert tablets, then later in the
afternoon (if needed) take another 5mg tablet of Dexedrine.
What happened over the next few weeks, my body wanted more and more
Dexedrine. Also, after a couple of hours I would get extremely groggy
because I was coming down off the high from the Dexedrine. I hated how
it made me feel.
I told my doctor that I hated it and didn't want to take it any more. He
was surprise because most patients want more and more because they get
addicted to it. Bascially, my body was getting addicted to it but I wasn't=
giving in.
That's my Dexedrine story. As for you being exhausted at the end of the
day, it's probably the effects from the Dexedrine wearing off.
-----
For Clynch,
Good for you! You have to stand up to the doctors and speak your mind
for them to take you seriously, listen to you and do something!
The first doctor I had at the Stanford Sleep Clinic drove me crazy. He
spoke to fast, listened to only half of what I said and never examined me. =
They're suppose to take you to an examing room and take your blood
pressure, pulse and perform those other little nuerological tests. He
always took me to his office were he would just ask me questions. The
one thing that really drove me crazy was; he would ask about my family and =
friends and say he worried about me and always wondered if I was
depressed. I finally got frustrated one day and told him I'm not depressed =
and if I seem to be it's because of you, for the fact that you don't listen=
to
me, you rush me and I feel that I am not getting the best care from you
and I don't like waiting for a whole hour (which happened more then once)
just to sit and not be listened to for only five minuets!!
That was the last of him!! I ask for another specialist who had a better b=
ed
side manner, and I did.
------
To weedwitch@... and Andy,
Probably, most people have never heard of Narcolepsy and even if you try
to explain it to them the still don't understand.
I always felt like people just thought that I was lazy, didn't want to work=
or
because I was young that I was out partying all night and didn't get much
sleep.
Also, they might believe you have Narcolepsy but think if you took a nap or=
going to bed earlier at night will cure everything. I also feel that it's =
harder for people to comprehend and understand because they can't see
it. It's not visible like an amputee that needs a wheelchair or a blind
person that needs a cane or guide dog. Also, in this high tech world
where people work longer hours and sleep less, they probably figure 'I only=
get 5 hours of sleep a night and I am tired, so why can't you?'. A lot of =
people are just dumb, too.
As for naps, they never worked for me. I avoid naps (unless it's unavoidab=
le
due to a sleep attack) because I usually felt worse afterward. If I happen=
to feel a little better, I would need at least 30-60 minuets to feel totall=
y
awake.
So, instead of napping I take a quiet time. I sit or lay down in a quiet r=
oom
and read, watch tv or just chill out for an hour. I also have a little sna=
ck,
the fuel from the snack helps perk me up.
------
To Everyone,
I have been fired from almost every job I have ever had because of my
Narcolepsy. I can understand the employers point of veiw, because if I was=
late or couldn't make it they were short staffed and it's hard on them. I =
have tried to find jobs where there were more staff members, so if I
couldn't make it in it wouldn't be so bad. That didn't work.
My last position (in a retial drug store chain) were the most understandin=
g
and worked with me to find the best schedule and let me leave early for
doctor appointments. Unfortunately, after working their for two years, my =
condition grew worse and I had to quit.
As of now, I'm declared disabled and on permanent disablity. I am now
taking computer classes and hope to find a position that would allow me to =
work from home.
I am curious as to what medications all of you have tried and/or now
taking. My current meds aren't working as well as usual ( Take four Cylert=
37.5 mg tablets every A.M.). Also, if you do work, what kind of work do yo=
u
do and how do you handle your condition with your employer.
That's enough for now,
S. Sanders :-)
Hi Violla my friend,
As it seems, the photofacial is the same thing as the IPL. The
epilight however, is used to remove unwanted hair. The YAG 1064 which
this medical advisor was referring to, perhaps was a little mis
informed about using the YAG along with the IPL for treating rosacea
as well as for the spider veins.The YAG on the other hand treats the
feeder vessels which feed off the smaller ones which if not attacked
in some cases, can cause your rosacea to worsen. Not always, but in
some cases, depending on the severity of your situation. Fortunately,
the YAG and the IPL as well as the epilight can all be used during
the same tx. Perhaps this particular doctor doesn't do this, but just
know it's ok to have all of these used during one treatment. I've
never had the epilight used, but have known a few who have as well as
the others lasers you mentioned all in one session. I am one who has
also had a combination of the IPL and the YAG in one treatment. It
also does get rid of the spider veins, although, I was fortunate not
to have this problem, others who have, say it works wonders.
Sometimes depending on the settings of the YAG will depend on the
side effects you can have...also it hurts like the dickens, but works
wonders, so it's worth it. I always tell my husband, a little pain
for a little while is much better then a life time of excurating
pain.
The IPL treats the superficial veins as well as the deepers ones, but
certain filter heads have to be used in order to attack these deeper
vessels and also have to be used with a series of different energy
settings. Upon your consult with the doctor this week, ask him/her if
they used a series of filter heads with their IPL. You want each
filter head used on you accordingly such as the 550 and the 570 for
shallow or superficial veins, 590 for medium wave lengths and the
645/ 695/ and also the 755 for the deeper veins. From treatment to
treatment, they will adjust the energy settings accordingly, each
time becoming a little more aggressive. Ask each time what they are
using on you...you have that right as the patientto know what they
are using on you, don't let them tell you otherwise.
In any case, if you are very severe, you definitely should insist on
getting the YAG used regardless. However, the doctor MUST know
exactly what he/she is doing in order to use this particular laser.
You might ask them to do a test spot using the YAG on a certain area,
such as on your ear or even behind your ear, just to see how your
skin will react.
Also double and triple pulses should always be administered too for
maxium results. Triple pulse is less painful, when using the IPL, you
will know if they are using double or triple, because the triple
pulse you can hardly feel each zap,to a certain degree you can feel
it, depending on the energy setting that is being used at the time,
the double pulse is a little more aggressive and is much more
intense. You need to have both used to get the full benefit from your
treatment.
If you have any more questions, you know you can email me personally
anytime you wish and I will get back to you as soon as possible.
I hope this hasn't confused you further, if so, let me know and I
will try to explain further.
Ann
Hi All,
I got from Lumenis 3 names of derms here (in Israel) that use there photoderm machines.
Only one woman doctor on the list seems to have also medical advisors answering the phone.
They explained me that for the spider veins/ telangiectasya the doctor treats with a Yag laser machine but for the underlying redness they do photofacial. I asked what exactly is the machine to make sure we are talking about the same photoderm I read on the support group. She sais its also called photorejuvanation also called IPL also called Epilight.
She than explained that the IPL machine takes does a little peeling to the skin and the cells become stronger while doing that it also treats the deeper veins??
I am a bit confused because the first time I called a secratary explained this machine is used for renewing the skin (mayb good for wrinkles??). But now I hear from this medical advisor that it does everything only I need to get a check up with the doctor to see if this treatment is suitable for me. Ah..and then she added that with the same machine u can also treat unwanted hair.
When she mentioned peeling it kind of scared me off because peeling is assoicated in my head with causing a more red face??
I have a consulting appointment with them next week.
Please I woul appreciate your help on explaining me how exactly photoderm works for rosacea??
I read on the internet that photoderm also treats spider veins but this woman said the YAG does a better job with that but u can not have both treatments on the same day u need to finish with yag and have photoderm some day further.
All of u whom know more about photoderm is this true????
Is your photoderm with the same name above??
Thank u all for your help,
Violla
I as well have had a series of IPL treatments, and as it seems, for
me,it's actually a combination of IPL treatments plus other lasers
that help to eliminate the permenant redness.
If you've only had one IPL session and you've already seen a
remarkable difference... that's GREAT! but you must remain on top of
things and have at least a total of 5 especially if your rosacea is
mild. Moderate or severe suffers can vary depending on the
individual, and might require more then the average treatments.
Ann
Hi Susan,
If the metro lotion doesnt' seem to be working, then you might
possibly ask your derm to switch you to Nortiate. I actually liked
this much better since it helps also with the acne component of
rosacea, plus you only need to use it once daily, rather then twice
daily. I'm no longer using any topical antibotic on my face, since my
permanent redness has almost completely diminished after having a
series of photoderm treatments and a combination of other lasers as
well.
Unfortunately, however, using the Nortiate, doesn't take away the
redness permanately, it's obviously only a temporary fix. If you want
to get rid of the redness altogether, then you might check out having
laser treatments later on.
Ann
Hi Debby...looking back, I think my mom had N and it was just not diagnosed.
I have only been diagnosed in the last two years and I'm middle age and I
know I had some of the symptoms for a long time before they became so obvious
that I had to address the situation. Now that I am on medication...it is nice
to be able to watch TV or a movie with my hubby too and not fall asleep.
Back to family history...I have heard stories of my grandfather falling
asleep and snoring away on the back pew at church every Sunday. Makes me
wonder just how many undiagnosed N's we may have had in our family. Or maybe
he was just tired. lol Marilyn
In this past Dec. I started having symptoms of narcolepsy, but when i look
back on my early life i wonder now if I didnt always have a mild sign of it
and it just got worse now that i am middle age?
Even as a child i never had that high energy level i was always more on the
tired side.
I hated to run and anything that called for alot of energy.
As I become a teenager and young adult I always said i wasnt a morning person
nor a night person. I slept 10-12hrs easy drove my mom nuts and when night
came and I was tired i was unbarable to be around so much so I was sent to
bed.
I got older and even less energy and drive to go go go like most young adults
and teens.
Now suddenly to the point i cant not sit and relax without fallen off to
sleep. Getting tired every couple hours and needing a nap even if just a 15
min and being able to lay down and be out just that easy no matter my
surroundings.
One advantage I have found in the situation of this Narcolepsy is that when i
go into bed at night with no drug assistance i know i am guarenteed to fall
asleep for how long is another question. one hour, two or 4 is the record.
I made it through a whole movie lastnite with my husband first time in
months, I was so happy and proud of myself, of course i had several naps
through the day to help. That is our favorite past time together and we have
missed it since this problem developed to this degree of fatigue.
Being off work has helped to find a pattern and methods to deal with the
problem and doing what i like to do.
Family history. Remebering back my dad could never sit and watch tv if he
wasnt on his feet or busy he was asleep, even at other peoples house when he
went for dinner as a guest so perhaps to a degree he to had narcolepsy and
that is my connection?
Debby(New to the major symptoms of Narcolepsy)
--- My guess is that there is an enzyme in the pineapple that works
to break down the allergen which is making you itch. This might be
the same thing that won't let jello get hard with fresh pineapple in
it. A cost effective (cheap) cure that works is the best one!!
Kate
Hi,
I was wondering what people found that works to decrease the redness. I have
redness in my cheeks, chin nose and forehead. Is there something out there
besides Metrogel/lotion(which didn't work for me)that may be topical or oral
that would help this.
Thanks,
Susan