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#81 Lovemyhusband

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Posted 10 August 2008 - 07:16 PM

QUOTE (Furio83 @ Aug 10 2008, 06:55 PM) <{POST_SNAPBACK}>
While New York state is lovely, I'm not too fond of cold weather. I'll do my residency anywhere that will take me, but after that I'd like to practice somewhere that's warm enough for at least a small palm tree to grow.


Boy do I hear you on the weather! I am trying to convince Andre that in 5 years we sell our home and move south. I was born in Florida and I HATE angry.gif the snow. Andre has always lived in the town we live in now so its difficult for him to even think about being anywhere else. I on the other hand was a military brat laugh.gif and can live almost anywhere. I prefer palm trees but will take anything that doesn't require me to shovel snow several months out of the year.

#82 Sleepy Mere

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Posted 11 August 2008 - 01:48 PM

Hi everyone- My name is Meredith, I am 27 years old and I am a high school social studies teacher (currently searching for a new school- wish me luck! wink.gif . I was diagnosed in February and have been taking Provigil. Its better than nothing, although my state insurance doesn't want to pay for my prescriptions...
I have severe EDS, very mild cataplexy and sleep paralysis and the occassional hallucination. My boyfriend gets quite a kick out of the hallucinations...
I have been trying to learn more about narcolepsy- and thank goodness found a reference to this site. There is just so much misinformation and misunderstanding out there. With that, its nice to meet you all and I look forward to learning more and having a place to vent and ask questions where people understand what is actually going on.


#83 Lais02

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Posted 12 August 2008 - 05:25 AM

QUOTE (Sleepy Mere @ Aug 11 2008, 11:48 AM) <{POST_SNAPBACK}>
I was diagnosed in February and have been taking Provigil. Its better than nothing, although my state insurance doesn't want to pay for my prescriptions...


Hi Meredith! Have your doctor write a letter. Thats the only way I got mine covered. Good luck and welcome to NN! smile.gif

#84 Lovemyhusband

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Posted 12 August 2008 - 07:05 AM

Hi Meredith! I'm glad you found the site.

High School kids! that in itself must make for an interesting day. My son is in the middle school here and I shudder at some of the things the kids do.

#85 Kgoulet

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Posted 13 August 2008 - 09:00 PM

Hi everybody!
This is my first post. I was diagnosed with N yesterday. I'm alternating between angry angry.gif and depressed sad.gif right now. I was expecting to hear 'sleep apnea' since I had been diagnosed with that many years ago. The narcolepsy thing threw me for a loop. I'm trying to decide whether to take short term disability for a while or whether to try and tough it out at work, hoping I don't get caught napping and hoping my less-than-stellar performance doesn't get me fired. Right now I'm thinking STD because it would be really bad timing to get fired at a time when I need frequent doctor visits and expensive meds. And, of course, there is coming to terms with the drive/don't drive question (my commute is 120 miles round trip). I'm a little overwhelmed.

For now, I just want to say that I appreciate all of you participating in the forum. There is some comfort in knowing you are there for support. I'll participate more after I get over the shock.

Everyone take care.

#86 catnapperJZ

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Posted 14 August 2008 - 08:24 PM

Hi Everyone!

My name is Jen, I am 36 yo, and was officially diagnosed with narcolepsy two weeks ago. I am so unbelievably relieved to finally know what is wrong with me and that I am not just crazy or just lazy (I'm both... just kidding!). wink.gif

A couple of months ago I finally started reading some more about narcolepsy and realized that I may have it (after ruling out everything else). I requested a sleep study and MSLT to confirm my suspicians. I have major EDS, very vivid dreams and auditory hallucinations (loud music upon awakening), and infrequent sleep paralysis. I don't have cataplexy or spontaneously fall asleep, which is why I never thought I had narcolepsy. I do have sleep attacks and find them excrutiating to endure. I cannot sleep at work under any circumstances (I work at a nuke plant), so naps are not an option for me until I get home.

I've been undiagnosed and misdiagnosed for ~15 years. I suffer from major depression so that is what the doctors always assume when all the other tests come back negative. I'm currently on forced disability due to the diagnosis and new medication (Provigil). I think it is helping, but I'm also getting bad headaches so I'm not sure if the net result will be worth it. I'm going to ask my doctor about Xyrem though, after reading some of the posts.

It has been so helpful to hear the stories from all of you who share this dreaded disorder. angry.gif
I've encouraged my husband to read the posts too. I think it will help us both a great deal.

I'll be visiting often and look forward to reading more about all of you. rolleyes.gif

Jen smile.gif

#87 browneyes091686

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Posted 16 August 2008 - 11:15 PM

Hi! My name is Vicky. I was diagnosed with narcolepsy at 17. I started having slight symptoms when I was 13 (mainly just not having a lot of energy) but they started getting pretty bad pretty fast around 15 1/2. I literally fell asleep with a half chewed cookie in my mouth several months before my sleep study. I was pretty lucky and had a great family who all excepted this about me and tried to be extremely understanding. Also, I went to a very small high school and even though I got teased a lot all my friends and even just classmates who I hardly talked to tried to be very understanding. I take Concerta and that's it. I didn't realize until I started reading on these forums that you could be on several meds at a time for this. Concerta tends to help treat every symptom (which I have all 4 main symptoms....go big or go home I guess! lol).

My two big complaints right now would be driving and being 21 and not being able to go out and stay out all night with friends. I'm getting ready to face my next big challenge: going away to college and living in a dorm. I've been in college for the past 3 year but am not transferring to a University and will have roommates. I really hope they all understand that I need my sleep in order to function correctly! lol Plus, trying to stay awake and take notes in class.

Well, I've never really belonged to forums before but I really like the idea of being able to talk to people who know exactly what I'm talking about and how I feel!

#88 skoobusnla

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Posted 17 August 2008 - 12:14 PM

Hello All

My name is Connie, I am a Busdriver for Los Angeles Unified School District. I haven't actually been diagnosed with "N" but I am sure that it can't possibly be anything else, I just don't want to be retired medically from my job of 23 yrs. Don't worry I am not putting any one in jeopardy staying on my job, luckily I can drop for a nap pretty much with in 10 mins of getting sleepy. I have dealt with this for quite a few years, but it wasn't until last year when I was working Summer School, and would come into the office, and drop for a 2 hr nap and wake up to my new Supervisor telling me , that they have medication for people like me, I thought I was just working too much, oh well who knew?



#89 hypnos1

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Posted 22 August 2008 - 03:04 PM

Hi I'm Greg. New to forum and find myself taking a surprisingly large amount of comfort from reading what all of you have to say about your lives.

Sometimes feel like people with N have to do life with half their mind tied behind their back, but get no credit.

Also....this may sound strange but is there some famous person who has this. Maybe then people would understand better.

Anyway, hello and thanks for taking the time to share how this thing affects you.

#90 ikon0304

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Posted 23 August 2008 - 06:25 AM

Hi, Im Dottie, we never diagnosed my Narco when i was young. Just blamed my cataplexy episodes as low blood pressure. Never even thought it would or could be something else. I went some time with no cat attacks and in 2006 i had an attack at work. unfortunately i was a cook at a school and this all happened in the kitchen. After 6 months of them telling me it was al in my head and i didnt have epilepsy, my sons psychiatrist saw me aftera cat attack and diagnosed me on the spot. sent me for daytime sleep study and boom..i have narc and cat..also hallucinate and have some very active dreams where i actually wake up hitting my boyfriend. (not sure if thats subconsciouse just for fun <giggle> ) still trying to get a handle on all this. stress, laughter, any strong emotion sets me up for a cat attack. for now just trying to cope until all the stress is over (divorce, restraining order against my soon to be ex for domestic violance, etc..) i also have bi-polar and post traumatic stress disorder (that was diagnosed in 1988 right after my first husband hung himself in our home) i no longer can drive nor work. SSI has denied my claim and i am appealing..ok..so i have blabbered long enough..just want to say hi and im glad i found this community rolleyes.gif

#91 Guest_~K~_*

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Posted 28 August 2008 - 09:55 AM

I'm Kei. I probably had narcolepsy from when I was a teenager -- I used to come home from school and go to bed. However, I was not diagnosed until I was 39 -- 25 years of struggle! I had other health problems too, and finally got a doctor to admit my fatigue was more than normal, and she diagnosed me with Chronic Fatigue Syndrome. She didn't refer me to a sleep specialist -- I didn't know there was such a thing! My daughter, otherwise healthy, got referred by the same doctor to a sleep specialist and since her case was uncomplicated, she was diagnosed. In learning about her condition, I realized I had it too and got my own diagnosis.

When I first got my diagnosis the state of Maryland tried to suspend my driver's license, but I had a good driving record and passed the test they made me take, so they restricted it to no driving after six pm. I struggled to find out how to appeal that but never did; finally, eight years later and with a perfect driving record (no accidents or tickets), they finally lifted the restriction, yay! That was nothing but blatant discrimination based on diagnosis. People who are properly treated for narcolepsy are no more likely to have an accident than anybody else.

My advice for people with narcolepsy: Don't fight it. Don't force yourself to stay awake, don't force yourself to keep going if you feel like you might be having cataplexy. Take care of yourself. If you were near-sighted, you wouldn't force yourself to squint all the time, would you? You'd get glasses or contacts. If you had asthma, you'd used your inhaler, right? So, accept that you have narcolepsy, get enough rest, take naps, and do whatever works to help you feel refreshed and ready. Respect yourself!

Narcolepsy, which was once the totality of my life (sleeping as much as 20 out of 24 hours), is now a small part. I'm a published poet, a volunteer crew man aboard a historic wooden sailing vessel, I parent two children, and I work at one of America's big box retailers. I enjoy my life. (Don't enjoy my job, but I'm glad to be back working full time.)





#92 Kgoulet

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Posted 28 August 2008 - 04:20 PM

Hi Kei,
I'm wondering, when you say not to fight the urge to sleep, how does one do that and still hold a job? I'm recently diagnosed and trying to figure out how to live with this and work.

--Kathy



#93 Lovemyhusband

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Posted 29 August 2008 - 02:08 PM

QUOTE (Kgoulet @ Aug 28 2008, 05:20 PM) <{POST_SNAPBACK}>
Hi Kei,
I'm wondering, when you say not to fight the urge to sleep, how does one do that and still hold a job? I'm recently diagnosed and trying to figure out how to live with this and work.

--Kathy


Hey Kathy, You have every right to ask for allotted time to take a nap if needed. Look into it at work with the human resources dept. You might find you will be more productive if you take a break than you would be spending your energy on fighting it. Of course I can only tell you what works best for Andre since I am a pwon. Andre has finally decided to give in at work. If he feels that overwhelming need to nap he takes a break to nap or get control again. It doesn't always work but he no longer uses up precious energy trying to hide it or fight the sleepiness. It also helps his outlook on life since he no longer spends his days worrying about it. Good Luck!!


#94 jlossrn

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Posted 15 September 2008 - 03:15 PM

Well, I guess it's my turn. I'm jeff. Was diagnosed april last year, after being accused of being lazy, on drugs, depressed and a conversion disorder. LOL. That alone was enough to make anyone depressed. The overnight and daytime sleep study was the clincher. Narcolepsy. I was so happy to have an explaination for the falls, the dropping of things, the hallucinations, the lethargy but not really sleeping that well. At any rate, I'm xyrem which is great and helps me sleep longer hours. I still have crazy hallucinations but i'm not falling as much which i am grateful for. Sorry about the poor spelling or if my scattered brained. Thats another by product. Hi to all......

#95 sleepless sleeper

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Posted 15 September 2008 - 04:39 PM

Hi, I am so glad that I found this website. I've been meaning to find something like this for about four years, but by the time that I would find sites I would be too tired to stay at the computer. Fortunately, I looked through my "sleep info" folder that I set up in bookmarks and found that I had bookmarked this site several times. I finally forced myself to register and take the time to post several replies. I am so thankful to meet others that experience what I go through. Although I know that I'm not the only one, it is still great to hear other real people expressing the same feelings. I don't know anyone else with this disease, and it is understandably difficult for people that I know to empathize with what's going on. I'm not in a wheelchair, I don't have to go to chemo, I don't have an oxygen tank hooked up to me, I have all my limbs, etc., so people just do not understand that this is a disability and not pure laziness.

Speaking of getting too tired sitting at the computer; guess what? I want to say more, but I've got to go.

#96 bibia

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Posted 17 September 2008 - 04:10 PM

[quote name='sleepylisa' date='Apr 5 2008, 09:21 AM' post='2574']
Hi Lisa, and Clara,

I'm Samya, I live in North California and just like Lisa my symptoms also go back to my teen years, EDS, automatic behavior and blanks, but my diagnose only came after a MSLT a few months ago. I was no longer able to drive a few miles without stopping on the curb for a naps rolleyes.gif . I just joined the forum today and i'm so excited to find it! I know we will all be able to help each other!

#97 jvirtue

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Posted 29 September 2008 - 01:34 PM

Hi, my names Josh and I've been sort of a lurker here for a couple of weeks, just taking time to read all I can about this. Funny thing is you would think after living with this for so long we would all know the in's and out's better than the Drs. I have been officialy diagnosed for about three weeks now but have been fighting it since I was about 11-12. I have EDS, sleep paralysis, micro sleeps, well the list sort of goes on. Any way, my story isn't to different from anyone elses really. I am very glad there is a place to go where questions can be asked and answered by the people it affects the most.

#98 Kimberly

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Posted 15 October 2008 - 01:31 AM

QUOTE (jvirtue @ Sep 29 2008, 01:34 PM) <{POST_SNAPBACK}>
Hi, my names Josh and I've been sort of a lurker here for a couple of weeks, just taking time to read all I can about this.


Welcome, Josh!

I noticed that we have added quite a few new members in the past couple of weeks, but that I haven't seen any new member introductions here in this thread since September.

So come on all of you new members (and all of you oldies but goodies who have never formally introduced yourselves), why not share a little bit about yourself here in this New User thread?

As Josh said above, we all have similar stories -- but the beauty of the Narcolepsy Network online forums is that we all have differences too -- and there's fantastic potential for shared learning and growth just by putting brain and fingers to keyboard.

I know I'm not alone when I say that collectively, I'm glad that you 're here!

#99 Marcianna

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Posted 15 October 2008 - 08:52 AM

Ha ha! I have never posted here..... How did I manage that?

lets see......

stuff about me..... I live in Ohio, I have Narcolepsy, cataplexy, and all the fun stuff that goes with it.
I don't take meds I dont believe in drugs. I'm a Vegetarian.... the I'm to broke to eat meat kind not the poor baby animals kind.
I do have a soft spot for BK junior Whoppers.

I have 4 cats and 4 turtles.

I do have a rather sick and twisted sense of humor, so I apologize ahead of time if I offend anyone.... I try really hard not too.



#100 hathor

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Posted 15 October 2008 - 02:15 PM

hello everyone,
my name is clare and i have had narcolepsy and cataplexy and some other sleep problems for as long as i can remember but i was diagnosed when i was about 12. im 29 now. i live in the UK and i have never spoke to anyone with narcolepsy before and now i found a website full of people!! so anyone willing to share there stories and make palls please feel free to get in touch.
bye for now
clare.