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my name is kelly mom to (A) now 25- started over 10 years ago--after 29 uDxs and Dxs and having the title of nuts, mental, lazy,etc ..you all know the rest---been there done that and still having to contuine doing the been there done that dance- whats new just got Dxs in march with cats without nar at is time not much of a prize but - always a BUT... been sitting in limbo- waiting the last 2 months- waiting for the nuer to call- --2009 to 2010 the Dr who sent son to LA is unable to help anymore not his speicaty with what he has- -saw a nuer Dr-2008 or 2009 brain fog--the second visit with a nuer Dr here stated theirs nothing wrong with him theres nothing more she can do and says he need to see a psy and not to come back--we were supose to see her again( ugg) for sons treatment but she again said to the lung Dr theres noting wrong with him and refuses to see him again--fired the reg Dr- its taken 2 months to get a new one- this tus-finely-- because of his insurence hes limited on who he can see and if he gets outside help they well cansule him(someone elses money) --lost count on how many Drs and shrinks all kinds--I have RA and fibo so catching/ holding/moving a 160lbs body with part or no muscle tone can be painful sometimes--2010 saw a wonderful Dr in LA ahead of the Neurology deptarment now if we can get another refural to go back and keep going back until we find someone here--yep that me you saw running down the street screaming pulling out my hair going crazy ---- my world my sons world his sisters world and all are welcome to it but .. hate the word but-- if you give me lip and/or call him mental scram-last but not least- the up and personal thing with the floor sucks---add on----**** sons shrink needs to see a shrink-- we brought up dbt,cbt as a treatment- he told son that if he wants help dealing with his problem he have to amit being mentaly ill-- the Dr in LA says its cataplexy--the shrinks still thinks its mental illness--wonder who knows what they are talking about-- one more shrink hits the dust-- the new Drs second visit in a few hours hope she reads his charts this time and has a brain not to classifafly him the way the other Drs at the clinic--what ever happened to Drs dumping patients--

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My name is Julie and I was recently diagnosed with N (Jan 2008). I feel like I have similar symptoms to Rhonda. So I just have to deal with the EDS and the lovely habit of night time bingeing!!! Actually I hate that part the most! :x It's been quite the adjustment and for the most part people just don't understand, especially my family. I'm only 23 and I fear it will get worse.

I have found the Sleep Paralysis and Hallucinations to be much less intense and frequent now that I am 40. Day time sleepiness is worse but I am better at recognizing/managing/treating.

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Hi! Im new to this community. Just diagnosed on Tuesday! I have been to my PMD, Neuro and finally Pulmonolgist. Im a 45yo RN, mother and wife. I too attributed my EDS to life. I recently fell asleep talking to a patient while doing his intake! I was so embarrassed! That was a motivating incident.

Im in the process of accepting this dx. I have to say Im feeling relieved and angry at the same time. Ive started taking nuvigil. It seems to be helping.

Im glad there is a place to share my thoughts and feelings. As truly no one understands. I Ive never met anyone with this dx and I work in one of the largest hospitals in the area!

I feel isolated and embarrassed.

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Hi. I'm Ronda, and I was just diagnosed 3 months ago. I am relieved to have a diagnosis and some good suggestions and medications to help me cope. I had no idea it was Narcolepsy because I don't fall asleep while I'm in meetings or talking to someone. I laughed at first, thinking it was a joke. I thought of N as hocus pocus and way out there, but lucky me, I now understand that there are all types of symptoms and not everyone has the same ones. Wierd. I'm still adjusting.

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Ronda,

I feel the exact same way, like ...really Narcolepsy? Are you sure? I've always had sleep issues but sure didn't know it would be narcolepsy because as far as I know, I have never fallen asleep while up and functioning. I wake up most days in extremely vivid dreams and I have a hard time "coming to". I can be "out of it for 1/2 hr. Very hard to become awake. Wondering if anyone else is like this??? I am trying to learn about the disorder. My Dr. has be on a sleep aid at night and Adderall in the day 2X and I tried Nuvigil once, but it made me feel bad, so I will wait for another day to try it again, when I am not so busy at work

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What is up with the night time binging? I find myself in bed at 11:00 pm just lying there thinking of crackers. Sometimes I just get up and eat crackers. Sometimes I wake up to find myself eating crackers in the kitchen.. So wierd...

I wonder if alot of people do this?

Yes! I do! I'm up 2-5X a night and I am so hungry! I keep trail mix in my bathroom, a couple of handfuls and I'm OK. Peanut M & M do the trick too.

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Hey

I'm Barb.. Dx'd in January 2009. I have N, C and SP. I'm a mother of 4 and have a wonderful supportive husband.

I work and go to school full time. I live my life and N is just part of what makes me, ME. I don't let it get me down.

I'm medicated with Xyrem Effexior and Provigil. Other than that I'm very active and healthy.

LOL I'm hyper this morning actually felt really rested this moring sorry...LOL

Nice to meet everyone...

Dr. wants to try Xyrem with me, but I am very sensitve to meds. Wonder what starting does I should try. Also, I read that you can wet the bed on this med. : (

You really feel rested? Any memory improvement? I take Adderall in the day/

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Hello everyone smile.gif I noticed we have lots of new users but I didn't get a chance to meet you all.

If you have a moment introduce yourself. I'll go first.

My name is Clara, I am a PWON married to a wonderful PWN. Andre (finally) was dx'd in January 2008. It was about time, someone besides the two of us, noticed it wasn't depression. We have two wonderful children and have been together for an amazing 18 years.

OK now its your turn. smile.gif I'm all ears/eyes

Hi

What does PWON and PWN mean?

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Hi Sleepzone,

Welcome to the forum! PWON is person without narcolepsy (like me) and PWN is person with narcolepsy (like my husband).

I see that you are in NE Ohio...where abouts??? We live in Rootstown (actually Edinburg Township) about midway between Akron and Youngstown.

Lorrie

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Hi Sleepzone,

Welcome to the forum! PWON is person without narcolepsy (like me) and PWN is person with narcolepsy (like my husband).

I see that you are in NE Ohio...where abouts??? We live in Rootstown (actually Edinburg Township) about midway between Akron and Youngstown.

Lorrie

Hello Lorrie,

Thank you.

A real - live- person to talk to about this! Wow this is exciting. I'm just starting my trip down this N road. I live near the Akron Canton Airport I know where Rootstown it, my sister lives in Kent.

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hey all,

23 yr old Uni student, I was diagnosed with Narcolepsy and cataplexy about 2 months ago. I knew something was up so I ended up doing alot of research before I went to the doc. My whole life I have stayed away from any sort of medication unless I absolutely needed it, and now, I have to take it to lead a normal day. hmmm sucks. Everything has gone downhill since last summer and its hard to explain any of this to the family or anyone else... so i havent yet.

cheers

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I'm 23 and I got diagnosed about a year ago after falling all the time and not knowing why. I was misdiagnosed with depression for many years and the medications/diagnosis covered the symptoms. I can't remember a time in my life when I wasn't tired. I was always being told to "smile" but I never had the energy. I spent most of my senior year of highschool sleeping and getting scolded for it, so I often have vivid nightmares of me not having a highschool diploma. I had to drop out of college for my excessive sleepiness. I am fighting a sleep attack right now. I am disabled. I cannot drive. I cannot find proper medications currently, although I'm not giving up hope. I can have about 30 cataplexy attacks a day if I'm on no medications and 1-3 a week at best. I have a psychiatric illness also, so were avoiding xyrem. And I would write more but it would start to not make sense soon.

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Hey everyone, you can call me MC.

I'm 26 yr old gal diagnosed with Narcolepsy without Cataplexy when I was 19 after many years of falling asleep in class and after school and in front of the tv and pretty much anywhere else! Got accused of being lazy more than a few times by my family but they certainly ate those words when the results of my MSLT came back. I was always an excellent student so I think people figured I was bored or didn't care. It was a relief to get the diagnosis and realize I wasn't crazy!

I think the hardest part to deal with are the social aspects when friends don't understand why I don't have the energy to gonout or get run-down and sick easier. Also my family thinks I'm antisocial when I walk out of the room at family gatherings to go lay down. I don't know if it's a narcolepsy thing but I'm very low key and don't like a ton of noise and chaos, stresses me out and i have always used sleep to take that time out. Luckily i've been on Provigil since the beginning and it seems to still work well for me.

Nice to meet all of you!

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Hello All,

I'm 29 yo just recently diagnosed with N in early November 2010. I was a bit doubtful because I was also experiencing withdrawal symptom from a mood stabilizer I was taking (lamictal), but it's been more than 3 months since I stopped the medication and my symptoms remained (though much better than the initial onset of symptoms). I'm currently not on medication and have been managing my symptoms through diets (eating more veggies/avoiding sugar and heavy carbs), daily meditation, and regular sleeping schedule. I currently do not experience cataplexy. I'm grateful for this forum and really appreciate the opportunity to meet others who have this condition. Wish the best for everyone!

MindfulNarcLA

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Hi there, I'm Nikki. A wife and mother of two beautiful tween girls. I was officially diagnosed with N w/C. in October of 2010. I've had symtoms since I was around 12. In school, that is when all my grades went to F's, I always had a electric pulse in my neck, when in class. I slept alot as a teen, my mom thought it was just hormones. After, my first daughter, I was a sleeping machine, all I ever got done was her care. 18 months later, I had another little girl and my tubes tied. I was always so tired. I always worked full time, but lost lots of jobs due to over sleeping. At 25, I had a Partial hysterectomy, due to endometreosis. I slept for a year, which I guess can be a normal side effect. My doc diagnosed me with Adult ADD, and put me on Adderall. Then my gyno said I needed B12 injections, they did nothing for me. Then, she ran every blood test, and came to the conclusion, my hormone levels are low for me. I am put on hormones, Cancer causing hormones and anti-depressants cause I'm tired because I'm depressed. I'm still not any better after a year. I quit the hormones and anti-depressants, and due to insurance I was no longer able to see the doc that gave me adderall. I see a new doc, she is my current PCP. She runs all kind of blood work, and comes to the conclusion I have Cronic Fatigue Syndrome(CFS). She puts me back on adderall. I start double vision and blurry vision at this time, go to eye doctor, he is shocked to find my vision changed alot, but it changes back. About a month later, I'm awoke by a man screaming in my ear, "Wake Up!" As I run through the house, I find the house empty. Hubby at work, kids at school. I ran to the doctors office to tell her what just happened, I told her I don't accept CFS, I want a sleep study. She said that's a great idea.

So, I had my first overnight, and the tech came to the conclusion, I don't need MSLT. That I had a few central Apneas. I also awoke 50+ times a hour. My doc refered me to a sleep specialist cause she had no clue. That specialist said, all people have CA's and he is concerned about the awakinings. Said it sounded like Narcolepsy and he told me to find a support group online, and I would find more things I'm doing that I wasn't aware of. He ordered MSLT, that came back, slept in all 5 naps, and went into REM in 3 within 3 mins. The specialist said "I deal with apnea I don't know what to do for you", he said my doc needs to refere me to a Neurologist. She sent me to a Neuro at the UofChi and she had genetic testing done came back pos. for the N gene mutation. When I met him he wanted me to redo the whole study, and go off my meds first for 2 weeks. That overnight and MSLT done at same time. The overnight, no apneas, and 50+ arousals an hour, very fragmented sleep and a migraine. I agree'd to stay with the migraine and do the MSLT where I took only 4 naps, I went into REM in all of them in as quick as 1min. Guess what guys, after all of these 19 years of sleep, Narcolepsy is the Word!

The word that changed my life, I'm not lazy, or crazy I have Narcolepsy with Cetaplexy. I was put on Xyrem at night and continue adderall during the day. I'm not better, but I have a better quality of life. Not to mention I've lost 30lbs in 2 months, just by getting the restorative sleep I had not had in 19 years. And, that sleep doctor was right, when I found Daily Strength, I found my life in a nutshell. I found people like me, and lots of answers.

That is why I'm here, now. My husband and I have been having issues, he thought the xyrem was gonna heal me and he wouldn't have to deal with Space Cadet Nikki, or No Volume Control Nikki, or I Can't Go to the Store Right Now Nikki. On my first visit here, there was a young wife discussing my problem. I read it to my husband, as I read and cried, he got it. He had never done any homework, like I asked. I had to explain, you need to know whats wrong with your wife, so you understand and stop being mad at me, so you can help me! I am here to help my kids, my husband and help me understand this crazy ride called, N! Hopefully, I can help someone else with N or their family's.

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Dr. wants to try Xyrem with me, but I am very sensitve to meds. Wonder what starting does I should try. Also, I read that you can wet the bed on this med. : (

You really feel rested? Any memory improvement? I take Adderall in the day/

I started at 2.25gm 2x a night, I slept, but it was still fragmented I also go pee before 2nd dose. A week later, I moved up to 3gm 2xs a night, that was amazing, I felt awake during the day and my memory came back. I never wet the bed on these doses, but like I said I go pee before 2nd dose. But, I recently had to move up a dose, to 3.75gm and during day I drank alot of water, felt dehydrated. So, I took first dose, slept quick and heavy, woke up to take second dose, and didn't go to bathroom, then I tried to get hubby to take me to the bathroom, but he didn't wake up. Therefore, I wet the bed. He woke me up, took me to the bathroom, he sprayed and flipped the bed. I crawled back in already sleeping! So my advice, go before both doses. It's alot of sodium and that is why u pee alot. Buy rubber sheets if ur scared. I slept with a garbage bag under my sheet the next night, but I didn't have an accident, because I went to the bathroom before 2nd dose. So, garbage bag gone. Getting that restoritive sleep is priceless!

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Hello,

My name is Lynette. Oh, my where to start..lol. I have wished sleeping was a sport all my life:) I know I am great at it:)

I am married to a PWON (or so I assume, but he likes to sleep too). We have 2 irritatingly energetic boys, and another boy that is like me is so many ways I worry.

I, like a lot of you, was called lazy for years, by just about everyone. I'm really good at pushing myself when I have to, so I didn't lose a lot of jobs due to sleeping, but I did quit a lot of jobs due to anxiety. I was misdiagnosed over and over again throughout the years with depression. The antidepressants never made me feel better. I do get depressed, and I didn't feel depressed when I took them, but after a while, I didn't feel anything at all. That was a scary time in my life. When you have no emotions, you are willing to do a lot of things you really shouldn't be doing.

I had my first child just after I turned 19; another a year and a half later, and another 2 years after that. I could barely take care of them. Sleeping consumed my life. All I cared about when I was awake, was when I could go back to sleep. I'm 31 now and was diagnosed about a year and a half ago.

For about 3 weeks, I would go to work, and after about 2 hrs, I was walking like a drunk and I could feel that I had to sleep. I can't describe the feeling. I have never had a cataplexy attack, but I have often wondered if this overwhelming feeling was a warning of one. When I get this feeling, I have about 10 min to find someonewhere to crash.

I went to the doctor (I was not nice either). I laid it all on the line in that office. I told him, I have had major depression, this is not it. I do not want antidepressants. I want you to find out what is wrong with me. I was always tired, of course, and my muscles were so sore I felt like I was always trying to move through water. I was in slow motion, and I couldn't do anything about it. He sent me to a neurologist, but not before telling me he thought it could be guillain barre disease. Well, that was a scare to leave me with.

I went through lots of blood tests and an MRI that brought me to tears. The noise was unbearable, and I am claustrophobic. Not something I will ever repeat.

I finally went to my sleep study. Sleeping at night was hard for me. I think the anxiety go in the way. I did finally fall asleep. The next day was awful. The naps are a nightmare. I didn't want to wake up in the morning at 8am. Then they gave me a recliner to sit in!!! Are they crazy!! Who can sit in a recliner and not go to sleep!! I had to go outside and talk on my cell all day. If I wasn't talking to someone, I couldn't stay awake. The nurse told me she has never seen someone as excited as me to take a nap..lol I was in REM in less than a min. They had to cover me up, because I was out before I could do it.

So, a week later I finally have a diagnoses. Doc started me on nuvigil. It helped, but not all day. She then put me on an afternoon dose also. about 9 months later, she upped the nuvigil to 250mg twice a day, and started me on xyrem. I could probably write another 20 paragraphs about that, but I won't. Long story short, the xyrem is not working well for me. I just stopped taking it a couple days ago. I'm exhausted, but I always am. I don't understand why or how, but the xyrem caused me chronic pain in my neck and shoulders. I was lashing out at everyone because I hurt so bad. The only way to relieve even some of the tension in my shoulders was to cry which I usually detest doing. Since I stopped taking it at the beginning of the week, my shoulders are finally at rest...ahhh. I felt like they were always up to my ears. If anyone touched them, I screamed!

I'll have to backtrack a little for this, but in the midst of finding something to help me, my father passed away. It will be a year next Fri. I didn't handle that well either. I did turn to the antidepressants then to help with the uncontrollable crying.

Anyway, all this time knowing what is wrong with me, my life is still in an upheavel. If the xyrem doesn't work, I'm not sure what we'll try next.

Also, does anyone else have the problem of having to sleep after you eat? Whenever I eat, I feel overwhelmingly tired. I cannot take naps. I can't make myself get back up and I feel worse when I do.

Lynette

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First, I want to apologize if I have put this in the wrong place. Forgive me, it's 12:30AM and I didn't see any sticky's for introducing yourself.

So, "Hi!"

I am a 30 year old single mom in Las Vegas. I work in the travel industry, love to read, travel, listen to live music and play with my kiddo. I was officially diagnosed with Narcolepsy one month before my 30th birthday. I've been "tired" forever, it seems like. Honestly though, I can date it back to when I was 15. In 2007, I had my first cataplexy attack. I was at work. Almost fell down. Scared the sh*t out of me! It happened about 10 more times, and I was out of my mind with worry and worse-case scenarios. I finally typed in "muscle loss when laughing" into google and Narcolepsy (cataplexy) was the only thing that came up. A light bulb went on. It all made PERFECT sense. I'm NOT LAZY!!! :D

Due to working full time and being a mommy (of a then one year old) I didn't persue a diagnosis/treatment until recently. I read that there wasn't a cure, so what was the point?

I've only been on Nuvigil for a few months now - but it's so awesome to know what having energy feels like. It's not all roses though. It wears off pretty quickly, if I do have any cataplexy attacks - they're worse than ever. The nightmares? I've only had those for a few months. Just now woke up from one actually. Now I'm afraid to go back to sleep. I feel helpless a lot and I don't want to "be a victim". I just want to be normal. I want my son to look at me and not think "why is Mommy so tired". More than anything, I want the guilt (for not being a *perfect* mom) to go away. Every single day I have to fight to get out of bed. I know that you've all been there.

So, more than just an introduction, I'd like to say THANK YOU. To each and everyone of you who have posted on this board. When I found this forum and read your stories, it gave me hope and makes me feel as if I'm not so alone in this crazy thing.

Johnna

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Hi, I'm Carly.

I'm 23 yrs old, and because of an unsuccessful sleep study, I have not received a full diagnosis of Narcolepsy, though my doctors and myself are 99% positive that's what I have. I did my sleep study in December 2010, and only got 6 hours of sleep, which meant I couldn't complete the MSLT. During said sleep study, I was also diagnosed with central sleep apnea. I also have chronic insomnia, which I orginially accounted for my EDS, but even after years of using different methods to get a full nights' rest, I am still barely able to function during the day. Currently my doctor is trying to improve my night time sleep, so that I can complete another sleep study.

Currently, life is a definite struggle to cope. Despite not having a written diagnosis, knowing that I most likely do have N has made a lot of sense. I've been struggling with symptoms all my life, and I honestly thought for the longest time that everyone felt the way I do. I think that's been the hardest part in dealing with this, realizing that the people around me do not understand what it feels like.

I'm just so thankful I found this community :)

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Hi Everyone,

I'm new here, but far from new as far as narcolepsy is concerned.

My name is Rhonda, I was diagnosed with narcolepsy when I was 26. I'm now 38. At that time I was falling asleep all over the place, dreaming while talking to people and standing up, not completing tasks at work (and not noticing), and people carried me home from the bar (although I did not drink). I was one of the lucky ones (in the beginning). I told my doctor about what was happening, and right away,she sent me to one of the best sleep neurologists in the country.

When tested, I was told I was rare, even for a narcoleptic; lucky me, I dream 100% when I sleep, which means I'm usually already dreaming before I lay my head on the pillow, and wake up still dreaming. I was also told there was a 100% chance of me developing cataplexy. I was terrified.... He put me on modafinal, even though it was not yet approved by the Canadian health officials - he said it was doing very well in France. So off I went, and for the first couple weeks of being on it, was talking like I was on speed, but then my body adapted. I was also lucky enough, to have a boss that permitted naps, so I was all over them, although it took me 20 minutes to really wake up from my naps, because the dreaming continued for that long.

Before all this, if I look back in hindsight, I can see the symptoms starting when I was 17. I was seeing screaming demon faces in anything with a texture i.e. clouds, wood, tapestry. I had an amazing first year in college (a 98% average), then transferred to university where I developed what I called "sleepy breathing". Not only that, I noticed somehow I was somehow skipping pages in my textbooks and somehow my mind was finding words that would continue the sentence I left off of on another page, so I didn't notice at first, but this phenominom certainly gave the sentences a different meaning. Ha ha! I was also falling asleep whenever I sat down to read. The biggest thing that stood out, was I was teaching people the material, but failing the quizzes and not doing very well on the exams. That's when I knew something was wrong.

So what did I do? I went to see a counselor, and told him something was wrong, describing all this. What did he do? He gave me an IQ test, and said I was average, although my spacial abilities were way above average. Frustrated I didn't argue that I knew the answers to the questions I said I didn't know, because in the moment the answers just weren't there.

Eventually I left university. After dropping out of so many classes and deferring so many papers, I was even more frustrated. I needed 3 classes to get my degree. I try correspondence, but I never did finish.

All this time, my chocolate addiction was growing, I was eating anywhere from 6 to 10 chocolate bars a day. I've now curbed that down to one. ;)

So I worked for few years and found a new job, where a year later, as I told you, I was falling asleep.

Fast forward a 4 years and I had moved across the country. That was when I had my first and only major cataplectic attack. Laying there, I knew what was happening, so I made the decision to wait and not panic. I found a doctor who sent me to a neurologist, who had only ever read about narcolepsy. I felt like a guinea pig to him - he wanted to see if it was epilepsy, an if I had sleep apnea (the two things he works with the most). Dude! I have been tested and have narcolepsy, get with the program! Grrr! He gave me a number to call to make an appointment to get tested, and when I called, no one spoke English, only French, and since I was just learning, I couldn't understand, and in all of my confusion and stress, wa having more narcoleptic attacks, and confused the words Tuesday and Thursday, and well, missed my appointment. Modafinal wasn't covered on the provncial drug plan, and when I asked them to, they said I could use the 40 year old drugs that had a history of severe side effects that was on the list instead. Then I moved a few blocks away, but because I didn't live in the same neighbourhood, I was no longer aloud to use my doctor (apparently it was a community clicic). I haven't had a doctor since.

So I changed my lifestyle, slowed down my social life, learnt about ways to deal with stress, learnt how to listen to my body, and learnt about how diet effects me. Spring and fall weather are hard to deal with, not quite warm, chilly days trigger my narcolepsy because it effects my core temperature, but other than that, I now only have narcoleptic attacks every month and a half or so, and because I'm listening to my body the cataplexy is medium-mild and only happens about every 3 months. And now I make a living teaching other people to listen to there bodies and face their fears, even if they aren't so sensitive as me. So something good has come out of it.:)

:o This is long! Sorry about that! :P

Rhonda

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Hi,am mary in KENYA,Africa.am married and blessed with a beautiful baby gal.i have been narcoleptic for 11yrs.it all started when i joined secondary school,i was take more than 5 long naps in a lesson.my fellow students watched me like a live movie.guess what!my brother was then a teacher in the same school.teachers would report this to him and took this to my parents who were very disappointed with me.i would feel sleepy when working in our farm.

i joined college,i was always feeling sleepy and tired which made me hate the day i was born.i was lonely coz fellow students thought i was lazy or i was forced to come to class.i failed every section that i tried only to pass after several trials,after failing section 5 i gave up.

With my fingers crossed,i tried working though.my first job,i reflected my true colours during training,i fell asleep after every one hour.this was to happen in every job i got.i don know whether to tell my husband my situation.now saving to start a business and forget i had a career.anyone else from africa?lets hook up

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Hello all. My name is Charlene. I am 37 years old. Mom of a 19 1/2 year old boy and a 19 month old girl. For as long as I can remember, I have always been sleepy. Struggling to get through every day. Struggling to stay awake behind the wheel driving to and from work. The phrase "I'm tired of being tired." was a staple in my vocabulary. I always said "If I'm not sleeping, I'm napping."

Having had enough, I finally spoke up to my doctor in September 2010 and told her about how tired I always am and always have been. She sent me to a neurologist who had me participate in a polysomnogram and an MSLT resulting in a diagnosis of Narcolepsy without Cataplexy. He prescribed Provigil 100mg which never really worked that great. One pill didn't seem enough and two pills made me feel too loopy. After 3 months of that, we switched to Nuvigil 150mg which seemed like a miracle drug to me. Aside from the headaches it caused in the mid afternoon, it worked like a charm. My regular doctor also prescribed Lexapro 10mg at the time to help me deal with some stress and family issues, but also to combat the headaches. That worked wonders as well. It feels so good to be a normal functioning part of my life again!

However, we are now trying to get pregnant again (and hopefully already are, but have to wait a few days to test) and I've had to stop taking the Nuvigil. :( I'm back to feeling sleepy and nodding off on my drive home from work again. I'm trying to counteract that by getting more sleep at night. When I was pregnant with my daughter, prior to being diagnosed, I just took a lunchtime nap every day which helped me get through the rest of the day. I'm hoping that will work for me again this time around.

Anyway, it's nice to find a group of people experiencing the same things I am and I look forward to the interaction!

Charlene

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:rolleyes: Hi Everybody!!

Ok, it's not like I'm

new to doing this but...... I do Not understand why this keeps defaulting to

double spacing when I hit return. I mean there's usually one of those icons up there ^^^ that shows the spacing?? Oh well, guess I'll figure it out eventually. So, it took me three days to sign on with the help of the beautiful lady Joyce, then a whole days worth of time to find this spot to say my Yahoos in.

I'm Brian and I'm a PWN. What else do ya'll wanna know? Oh, I get silly, it's better than getting angry and I have a tendency to make a paragraph where I'm supposed to make a sentence. So I had to have my foot amputated two days after Christmas and the day before my mom's birthday in '88, which made me 28, it was from a very rare form of cancer that was operated on when I was in the Army in Germany but they didn't biopsy a sample and it made the cancer spread which ulitmately make it so they had to cut off my foot, at the ankle which they now know is a bad way to do an amputation, then I had a rare disorder called RSD, Reflex Sympathetic Dystrophy.

Ok, I am a PWN so, I just wore myself out today, so I will continue later.

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Hey everyone.

I'm currently going through the dx stage but I figured since I'm active on these forums anyways, I might as well introduce myself.

I'm 23 year old man. If you would have asked me 4 months ago what Narcolepsy was, I would have just given you the Hollywood answer. It wasn't until I had my first full-time job that I actually noticed how tired I was. I drank 1-2 energy drinks throughout the day plus coffee and pop. I finally went out and bought caffeine pills to get by (I couldn't drink enough pop/energy drink since the fizz made me bloated :lol: ). The clincher moment was when I counted how many times I yawned in one minute and came up with the number 17. I proceeded to google the 'norm' and saw that an average person yawned 5 times per day! After that, I started putting 2 and 2 together and saw a doctor about being exhausted all the time (also because my supervisor pushed me since she thought it could be a tumor due to hallucinations, exhaustion, and migraines).

Fast forward past 2 sleep studies, an MSLT, a CPAP machine, and two months of Ritalin and you arrive where I'm at now. I am officially diagnosed with Idiopathic Hypersomnia with long sleep time (which is a joke now because it's becoming where I can't sleep longer than 4 hours without waking), Sleep Apnea (so mild my doctor finally said I didn't need the machine AFTER the lab already purchased it for me), and Delayed Sleep Phase (which is really where my sleep doctor is focusing on...thinking that my messed up sleep pattern is what's making me fall asleep while driving).

Just wishing I would get a definitive answer so I can move forward in life.

Peace.

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Hello, another new Member here.

My name is Michael. I live in Charlotte, NC. I'm a physical therapist.

I was a gainfully employed and generally happy optimistic caring individual until I reached the age of about 29, when Narcolepsy derailed my career, nearly ended my marriage, almost robbed me of my family, and otherwise made my life miserable.

I've seen received a lot of help from doctors, counselors, friends, family, and a variety of other people, but I suspect I'm actually getting far less help than what I truly need.

I've known about the Narcolepsy Network for some time, but for whatever reason waited until today to sign-up for this Forum. I think I've reached the limit of what I can accomplish by myself, and I'm ready to reach-out and seek your knowledge, experiences,and hopefully restore some more hope in my life. Maybe someday, if this goes well, I'll be able to help another person who ends up in shoes similar to what mine are like right now.

I'm very talkative and bright, and not shy at all. I hope to meet some people here that wouldn't mind being called my friends.

Thanks for reading. See you around I hope!

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