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Hi, my name is Sam and I am from Sheffield, England. I was diagnosed with Narcolepsy/Cataplexy about 6 years ago when I was about 17, here is a

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argh - that was much longer than even i thought it would be!!!

apologies!!

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I now realize I just wrote a short novel. Sorry guys......

So glad to find this place.

It's nice to meet you Shannan.

I am very glad you took the time to share your novel with us :P . Keep us posted on getting your BA. Good Luck!

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Hi, my name is Sam and I am from Sheffield, England. I was diagnosed with Narcolepsy/Cataplexy about 6 years ago when I was about 17, here is a

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Hi everyone! my name is casie, i'm 23 yrs. old & just got diagnosed about 9 months ago. I had the normal symptoms for years (11) and after 2 car accidents my parents and i decided it was serious enough to look into. It's made all the difference for me knowing and that it's not somethin i have to be embarrassed about anymore!

It dawned on me today that there might be a website like this with people like me! it's so encouraging just knowing there are some people who know what it's like to live with this. Does anyone else wish we lived in mexico or somewhere else where they enforced siestas?! i feel like that would solve so many problems...! Hehe.

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Hello everyone! I've been a member for awhile, and reading up, but haven't posted yet. (At least, not that I can remember...I'm crazy forgetful.)

I'm 27 and I was just diagnosed with narcolepsy 2 months ago, after 15+ years of sleep paralysis, auditory hallucinations, excessive daytime sleepiness, and hot flashes. Yes, it took that long for everyone to come to their senses and schedule me a sleep study.

I was on Adderall before I was even diagnosed. It worked wonderfully but it made my skin break out horribly, and on top of that all I wanted to eat was processed sugar, when normally I hate candy. I tried Provigil, and unfortunately even 400mg didn't work at ALL. Now I'm on Concerta which makes me sick to my stomach, albeit awake enough to experience feeling terrible. I haven't tried Xyrem yet, but I'm very concerned about the stories of binge eating.

I spend most of my days in bed, and I'm too sleepy to hold down a steady job. Relationships are super difficult too (at least from the standpoint that I can't get out much and meet people). I did graduate from college...it took me 7 years, but I graduated!

If I were forced to acknowledge an upside to this, it would be that sometimes I have really awesome dreams.

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Hello everyone!

I just registered, however I must confess I have been lurking for 2 months. I was diagnosed w/N in February of this year after at least 7 years of specific symptoms and seeing multiple doctors (oh the stories there!). I will post my funniest story on the thread that asked for funny stories. =) When my Rheumatologist suggested the idea of Narcolepsy, after a full cataplectic attack in January, both my husband and I were shocked as we nodded in acknowledgement of every symptom possible. My sleep studies then confirmed the diagnosis.

I am in my mid-30s, have 2 young sons (9 and 5), and thankfully a very understanding husband.

I am on disability while we are trying to sort out how to treat me. My story is a bit complicated, as I also have Ankylosing Spondylitis (a rheumatoid disease in the family w/RA and Lupus) and Fibromyalgia. I also have a bunch of other diseases brought on by my "AS"--Anterior Uevitis, Peripheral Neuropathy, Hypoglycemia, Reynauds Phenomenon, Enthesitis, Asthma, Costochondritis, and IBS. ...So...you can imagine how delicate it is to add new meds to my already packed schedule. ;) I am also HLA-B27 positive, which is a genetic marker for AS, but from my studies and discussions w/my team of docs (Rheumatologist, Pulmonologist, Sleep Specialist), there is a N link to an HLA gene as well. They are not going to test me though because the genetic testing I already had for AS leaves them w/a very strong possibility for the N marker...and hey, we already know I have it, so no need to waste time/money.

I am on Provigil and will start Xyrem this weekend (when my hubby can keep an eye on how I am doing). I am not much of a fan of the Provigil yet, on 400mg, but I am going to give it 6 weeks until I see my doc. It isn't helping and I do not like the side effects.

Because I am fortunate to have good disability insurance, I do not currently have the work stresses that so many of you have posted about (see, I HAVE been lurking). I already had those issues w/my AS and was already on a plan w/FMLA, but the N symptoms just were a big problem, regardless of my 10+ year track record as a top performer. Thankfully, that is one less concern right now. Not that is makes anyone feel better, but on the forum for my AS, being able to work and disability is a HUGE topic w/a lawyer who answers non-case specific questions...unfortunatey it seems going on disability can be next to impossible regardless of the disability you have.

Seeing as I had already been living w/several chronic issues for years, w/this diagnosis, I have not really had any sadness or sense of loss of former self, I have already been through that grief process and moved on. My hubby and I, and my boys, are just learning to live w/Rip Van Winkle now. (bad joke, I know). My oldest son also has AS, unfortunately, but fortunately, we are a team at our house and even when we need a pity party for ourselves at times, each of us only allowed 10 minutes...then it is back to living! (well, or sleeping in my case, but you guys know.)

So, I fight my sleep when I need to, but my general routine is to sleep whenever my husband and kids are not home, or I am not exercising, but that is almost always w/them because we are an active family...I run and play soccer because that is good for a joint condition right...haha! I love to shop for shoes and vintage dresses and I LOVE to go out dancing. Unfortunately, Narcolepsy is not a fan of me going out dancing. I am very girlie and have been known to get a shower, take a nap, fix my hair, make-up and get dressed up, then go take a nap again w/out anywhere to go, just because I like to be girlie and you never know who might stop by...my hubby and kids call those days "sleeping beauty" days, cuz there I am sleeping in a dress and such. Hey, whatever keeps us going right? The kids are getting used to mommy needing naps and planning things more. I bet they have figured out how to get away w/all kinds of stuff while I am asleep!! :lol:

Before coming here I asked around on the AS forum (spondylitis.org) about anyone w/N; many people there have sleep disorders, but it seemed I was the only one to proclaim Narcolepsy!

I am looking forward to getting to know all of you here. I am greatful for my other forum for AS (spondylitis.org) and have already found this forum to be very positive and helpful! Sorry for the book, I am a super social person, N puts a damper on that a bit, but I just wanted to give you guys a little of who I am before I start asking questions and replying to posts. :P

Christina

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Hi everyone! my name is casie, i'm 23 yrs. old & just got diagnosed about 9 months ago. I had the normal symptoms for years (11) and after 2 car accidents my parents and i decided it was serious enough to look into. It's made all the difference for me knowing and that it's not somethin i have to be embarrassed about anymore!

It dawned on me today that there might be a website like this with people like me! it's so encouraging just knowing there are some people who know what it's like to live with this. Does anyone else wish we lived in mexico or somewhere else where they enforced siestas?! i feel like that would solve so many problems...! Hehe.

Hello Cassie.

Although I don't have N I would enjoy having a nap time so dh wouldn't be pressured about his occasional :rolleyes: naps.

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If I were forced to acknowledge an upside to this, it would be that sometimes I have really awesome dreams.

Hello Curiosity.

I'm glad you decided to add to our boards. Lurking is helpful but I find interacting with everyone is more enjoyable than just lurking.

Andre (my husband) has some wild dreams. I often tell him I would kill to have such vivid dreams. Of course that sounds stupid to those with N who can't get away from the dreams but it would be nice to have just one good dream :P .

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Hello everyone!

I am on disability while we are trying to sort out how to treat me. My story is a bit complicated, as I also have Ankylosing Spondylitis (a rheumatoid disease in the family w/RA and Lupus) and Fibromyalgia. I also have a bunch of other diseases brought on by my "AS"--Anterior Uevitis, Peripheral Neuropathy, Hypoglycemia, Reynauds Phenomenon, Enthesitis, Asthma, Costochondritis, and IBS. ...So...you can imagine how delicate it is to add new meds to my already packed schedule. ;) I am also HLA-B27 positive, which is a genetic marker for AS, but from my studies and discussions w/my team of docs (Rheumatologist, Pulmonologist, Sleep Specialist), there is a N link to an HLA gene as well. They are not going to test me though because the genetic testing I already had for AS leaves them w/a very strong possibility for the N marker...and hey, we already know I have it, so no need to waste time/money.

Seeing as I had already been living w/several chronic issues for years, w/this diagnosis, I have not really had any sadness or sense of loss of former self, I have already been through that grief process and moved on. My hubby and I, and my boys, are just learning to live w/Rip Van Winkle now. (bad joke, I know). My oldest son also has AS, unfortunately, but fortunately, we are a team at our house and even when we need a pity party for ourselves at times, each of us only allowed 10 minutes...then it is back to living! (well, or sleeping in my case, but you guys know.)

Before coming here I asked around on the AS forum (spondylitis.org) about anyone w/N; many people there have sleep disorders, but it seemed I was the only one to proclaim Narcolepsy!

I am looking forward to getting to know all of you here. I am greatful for my other forum for AS (spondylitis.org) and have already found this forum to be very positive and helpful! Sorry for the book, I am a super social person, N puts a damper on that a bit, but I just wanted to give you guys a little of who I am before I start asking questions and replying to posts. :P

Christina

Hey Christina, you may be the missing link my family is looking for :D .

My husband has N, his father and oldest brother have AS. Andre has had joint type pains but they won't look into the AS yet for him since he is not in as much pain. That I find a little annoying since you can check for the genetic marker with a simple blood test. My son has a lot of problems moving his hips. but they did not find the genetic marker for him so he is still a mystery.

I am really glad you found this site too. I look forward to asking you lots of questions :P about your experience with N and AS.

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Hey Christina, you may be the missing link my family is looking for :D .

My husband has N, his father and oldest brother have AS. Andre has had joint type pains but they won't look into the AS yet for him since he is not in as much pain. That I find a little annoying since you can check for the genetic marker with a simple blood test. My son has a lot of problems moving his hips. but they did not find the genetic marker for him so he is still a mystery.

I am really glad you found this site too. I look forward to asking you lots of questions :P about your experience with N and AS.

Hey Clara,

WOW! I completely relate to where you family is at. My first thought was that people have different thresholds for pain tolerance and it is scientifically documented that people who have chronic long term pain have lowered thresholds overtime, so it is possible that "not much pain" is really subjective and not necessarily a reason for a doc to pursue finding out the source of the pain. Does your husband see a Rheumatologist? If not, can he see one or see a new one if his will not test him? Also, I think it is worth it to take your son to see a Peds "Rheumy", as those of us w/AS call them. In my experience, both w/AS and as a member on the AS forum (which you can Lurk on just like this one...hehe), without treatment, those aches and pains stand a high likelihood to become spinal or other joint fusion. AS is still far more common in men (although underdiagnosed in women), but that is even more reason to get to a doc. Btw, HLA-B27 is the primary marker, but new research has found 2 new markers, although they are not ready for wide spread testing yet. Further, I know of families w/AS (or other spondy diseases) where some have the marker and some do not. My older son is positive and is presenting "typically" as males do. My younger son is negative, but he also has issues, just less severe. My boys see the same Rheumy and we are aggressive to stay on top of my older son. My younger son is more of a wait and see case, but he is seen every 3 months and has been treated as needed, mostly w/exercises we help him perform.

Also on your son (I am very passionate about keeping on top of my son and his health, so this one is really in my heart of hearts), agility and strength training work wonders for hip pain, whether it is caused by a rheumatoid condition or just regular usage. If he isn't really active, a physical therapist could start him off. If he is already active, he could train w/a trainer or just step up any existing programs he has. My son plays competitive soccer and he trains w/an agility trainer. The goal is to strengthen and lengthen the muscles that support his joints in order that the joints are less taxed, and that he is overall more limber and fit. They focus on range of motion type strengthening and core agility exercises. It has really helped! He also sleeps on a mattress w/a down pillow top and on a heating blanket to keep his hips and spine from tensing while he sleeps and to make sure he doesn't have negative pressure while he sleeps. He used to wake up every morning and need 30 minutes to stretch before getting up. Now he gets right up, unless he is in a flare.

Do either your husband or son have eye issues like iritis/uevitis? I ask because it was my VERY first symptom and my opthamologist said I should be seen about auto-immune diseases, that although it might not be anything, there is a strong causal relationship between iritis/uevitis and auto-immune diseases like AS/Lupus/RA/etc.

As you know through N, we are our best advocates for good health and positive treatment in partnership w/a doc....AND that sometimes it takes forever for the symptoms to progess enough for diagnosis or to get the right doc. With rheumatoid diseases, waiting for the right symptoms can often time be too late because some symptoms do not come until fusion begins and that is irreversible. Both my rheumy and our sons rheumy are very proactive with the goal of keeping fusion away forever if we can, or at least as long as possible. Plus, even in people w/out auto-immune arthritis or osteo-arthritis, range of joint motion is use it or lose it and where there is pain, we are all (mostly) less likely to use it and set ourselves back further.

Also, if you want to chat individually, please let me know. I have AS, my dad has Crohn's, my grandpa had Lupus, so auto-immune/rheumatoid diseases are something I stay on top of as much as possible. :rolleyes: I had to stand out SOME how...I get to be the one w/Narcolepsy.

Christina

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Hi I'm Dustin I was diagnosed with Narcolepsy 4 years I'm 36 years old.

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Hi I'm Dustin I was diagnosed with Narcolepsy 4 years I'm 36 years old.

Hi Dustin! I was diagnosed around the same age. Would have been nice to be diagnosed sooner, but I have to admit it made life interesting!

-Stu

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My name is Dianne. I am 69 (sorry Ann, guess I'm the senior!! I think I came into the world with N. I was a very sleepy baby (Mother thought I was just "good"), fell asleep everyday in 1st grade and quite regularly during the day thereafter. (Mother decided I was a lazy teen)

I was diagnosed at 52 because a very sharp doctor realized my unexpected fall on the sidewalk ("no, I didn't trip; there was NO dog") as cataplexy and sent me to a sleep doctor. I've taken ritalin, dexedrine, and finally Provigil. I am now also on Xyrem. Nothing works perfectly and I wouldn't dream of driving on a trip longer than 100 mi., for fear of falling asleep.

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Hi Dustin! I was diagnosed around the same age. Would have been nice to be diagnosed sooner, but I have to admit it made life interesting!

-Stu

Yes it has made life interesting.

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Hello Everyone! My name is Aimee, I'm 24 years old and was diagnosed with narcolepsy 2 years ago. I first started having symptoms around the age of 16 - and went undiagnosed for 6 years. It was a very frustrating process, going to the doctors being tested for everything- everything coming back negative. It got to the point where the doctors felt it was something in my head. After I graduated from nursing school in 2005 I had my tonsils and uvula out because they thought my sleepiness may have something to do with sleep apnea- the surgery did nothing. A repeat sleep study after this surgery FINALLY diagnosed me with narcolepsy. Quite honestly it was really nice to finally know that there WAS something wrong with me and it WASN'T in my head. I am currently treated with Xyrem and work as a psychiatric nurse with children!! It's nice to meet all of you :P

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Hi I'm Dustin I was diagnosed with Narcolepsy 4 years I'm 36 years old.

Hi Dustin.

It seems like early thirties is the time to dx. My dh was 34 when he finally got his answer.

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Hello Everyone! My name is Aimee, I'm 24 years old and was diagnosed with narcolepsy 2 years ago. I first started having symptoms around the age of 16 - and went undiagnosed for 6 years. It was a very frustrating process, going to the doctors being tested for everything- everything coming back negative. It got to the point where the doctors felt it was something in my head. After I graduated from nursing school in 2005 I had my tonsils and uvula out because they thought my sleepiness may have something to do with sleep apnea- the surgery did nothing. A repeat sleep study after this surgery FINALLY diagnosed me with narcolepsy. Quite honestly it was really nice to finally know that there WAS something wrong with me and it WASN'T in my head. I am currently treated with Xyrem and work as a psychiatric nurse with children!! It's nice to meet all of you :P

Hello Aimee I'm glad you joined us.

psychiatric nurse....that must be rewarding and depressing at the same time.

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Hi everyone! My name is Heather, and I was informally diagnosed with narcolepsy in 2002... Long story short, my neurologist at the time based his diagnosis on my family history (i.e. older sister & grandfather with narcolepsy) and my symptoms, so I did not go through the sleep study initially. I recently moved (from GA to MN) and had to find a new doc here, and my new doc insisted (probably rightfully so) that I go through the sleep study before he'd start treating me. So I was only formally diagnosed in January this year. It was good to have official confirmation finally... The last few years have been difficult as I have had family & friends doubt my diagnosis because I never did the sleep study... I began doubting myself even! But wow! what a relief! Not to have narcolepsy, of course, but to be free of doubt now.

I admit I have been "lurking" on these message boards a little bit, but I wanted to formally introduce myself now because I am relieved also to have found such a supportive & understanding community here. I look forward to participating more in the future.

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Hi everyone! My name is Heather, and I was informally diagnosed with narcolepsy in 2002... Long story short, my neurologist at the time based his diagnosis on my family history (i.e. older sister & grandfather with narcolepsy) and my symptoms, so I did not go through the sleep study initially. I recently moved (from GA to MN) and had to find a new doc here, and my new doc insisted (probably rightfully so) that I go through the sleep study before he'd start treating me. So I was only formally diagnosed in January this year. It was good to have official confirmation finally... The last few years have been difficult as I have had family & friends doubt my diagnosis because I never did the sleep study... I began doubting myself even! But wow! what a relief! Not to have narcolepsy, of course, but to be free of doubt now.

I admit I have been "lurking" on these message boards a little bit, but I wanted to formally introduce myself now because I am relieved also to have found such a supportive & understanding community here. I look forward to participating more in the future.

Hey Heather, Thanks for taking the time to introduce yourself. I am sure (for most people) its better to have the definite answer as opposed to the "I think" answer.

see you around

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Hello Aimee I'm glad you joined us.

psychiatric nurse....that must be rewarding and depressing at the same time.

Thanks for the welcome! Yes indeed my job has its rewarding times and the not so fun times but all in all I love it! For the most part it keeps me running on my feet for 8 hours - so I kinda forget about how tired I am!!

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Hi, My name is Chrissy and I was diagnosed this past February with N. I am 40 years old and started having symptoms EDS, and some minor cataplexy about 2 years ago after having a concussion from an automobile accident.

It is very nice to meet everyone.

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Hi, My name is Chrissy and I was diagnosed this past February with N. I am 40 years old and started having symptoms EDS, and some minor cataplexy about 2 years ago after having a concussion from an automobile accident.

It is very nice to meet everyone.

Hello Chrissy. I'm glad you introduced yourself. Enjoy your Mother's Day.

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bump :rolleyes:

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CONGRATULATIONS :):):) HELLO BUMP.BIG BIG HUG FROM ACROSS THE SEA XXX

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