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#181 NightOwl



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Posted 23 September 2011 - 07:54 AM

Hi, My Name is Becky...I've been a lurker here for a while now, decided to finally introduce myself.

Thinking back, I've been in the sleep group for most of my adult life - and had just learned to cope with my "low energy" lifestyle. But about few years ago (at 37yrs) the symptoms really kicked in. I started having onset paralysis (with annoying hallucinations) on almost a nightly basis. Then I had the oddest new sensation - during an emotional "breakup" talk. I was getting up from the couch (for the final walk away, lol) and my legs just gave out on me. I sat kneeling for a minute, just couldn't stand back up. (Poor guy - probably thought I was all broken hearted - when really, I was extremely ANGRY and had to walk away before I really said something stupid! lol)

So I found a neurologist/sleep specialist. After the sleep study, I was diagnosed. And I was SO relieved to find the cause for my symptoms. And they were relatively minor symptoms, so I decided not to make a big deal out of it. Didn't share the news with anyone but closest family members and my (small business) employer. Tried Xyrem - unfortunately didn't work. After a few nights, woke up with breathing difficulty. Posted Image Doc and I thought it could be just exacerbating(sp?) seasonal allergies - but didn't want to really test the theory, seeing as I don't have a sleep partner that could watch over me while I tried it again. Again, thinking my symptoms are pretty minor, only needing to work about 20 hours per week, and mostly being just a "homebody" during my free time, I've been taking provigil/nuvigil and doing OK. Until a couple of months ago. When I learned that there are some things that can cause MAJOR flare ups in my symptoms. (1) abrupt medication changes (2) high stress (3) change in regular schedule and (4) increase in mental and physical activity.

In July, my health insurer dropped most brand names from the formulary of my personal plan, including Nuvigil. Because I work at a pharmacy, my boss immediately found out how much I'd have to pay to continue on Nuvigil. Being thoughtful, he offered to put me on the company health plan, all I had to do was maintain full time status. I thanked him, but tried to explain that I would physically be unable to work the 32+ hours required to stay on the plan. He seem a but surprised and confused - but accepted my answer. (Most my coworkers had been trying to get me to go "full time" for years-but don't think they ever really understand why I didn't.) They all just thought I was not much of a morning person. But something happened the next week - and I think it became very clear that I really couldn't physically handle it- when I had to work 45 hrs in one week.

We had a big drama flare up at work. Our newest employee was turning every day into a new episode of a soap opera. The stress of it all totally drained me. It finally ended when someone was fired, after I agreed to cover her hours until a replacement was found. I was able to push through most of the fogginess that first week and I warned everyone that I work with they may finally see some of my "narco" tendencies Every day, I work shoulder-to-shoulder (almost required in a pharmacy) with these people, so I really wanted to warn them about some of the symptoms that could show up during the week.

By Friday, I was showing symptoms that none of my coworkers had never even thought would be possible. (I had been working with some of them for 7+ years!) I had my first emergency nap at work. Previously, I'd been able to keep the napping at home (I feel them coming, but have about five minutes to "prepare.") When someone at work can't get a claim accepted, the "problem" is passed to me so I can troubleshoot. I was told about one of these "problem" claims, but, by the time I'd navigated through the software to the editing screen, I had literally forgotten the patient's name and what need to be fixed. I had to ask a coworker to repeat the basic info, something she'd just told me five minutes before. The look of surprise, then sympathy on her face was almost too much to handle...... The reaction from everyone at work has been amazingly good, almost overwhelming. Kind of makes me feel silly for the years of keeping it all to myself for so long.

I starting to the realize that all the time and energy I've spent downplaying my Narcolepsy has it's actually been a sort of disservice to myself. Acting like it's no big deal, rationing my energy without explaining it to anyone else, dealing "privately" with the worst symptoms- all it's really done is perpetuate the feeling of isolation that had developed over the last few years. I need to start socializing again, trying to express more of myself. (way too much silence lately.) So, here's my first post. Posted Image

#182 BrooklynJrerry



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Posted 27 September 2011 - 11:20 AM

Hello everyone I am Jerry age 36 from Brooklyn NY Married for 14 years with 4 kids.

I am a new member here but I have been reading here for a while I have been struggling with “Excessive Daytime Sleep” for years I have been tested for “Sleep Apnea “ 4 times the tests were negative the doctor gave me the mask anyways and I used the mask for a few months and it did noting after I told them the mask id useless they started telling about “Narcolepsy” they showed me some video of the symptoms and they mostly asked me about symptoms of “Cataplexy which I don’t have and the doctor told if you don’t have “Cataplexy” your don’t have it . One day I happen to meet some person from work who is diagnosed with “Narcolepsy” with Cataplexy (its funny how she found out I have Sleeping issues she caught me napping a times at work and she asked me and I told her my history these are my symptoms
1)always tired no matter how much I sleep, I get to work at (I have an office job sitting at a computer) 7 30 and by 8 30 I feel drunk cloudy and I just cant stay awake I take like 5 ten min naps a day it helps for a while but not much longer.

2)I also have this thing at nite I have this dream that some intruder is in my house and I hear him and I know I am in bed but there is noting I can do I cant move and I start screaming until my wife wakes me up, or sometimes I know I am sleeping and I try waking up for some reason and its not going this can happen taking a nap at my desk or car in my car I will know I am in my car and try getting up

3) The second I fall asleep I am dreaming even if it is at my desk sometimes I can dream while I close my eyes standing

I went to a different doctor we went trough my Symptoms I took that day nite test the tech that took care of me told you most have narcolepsy I had one of those screaming nites but when the test came back they said it does not look like you have it well I have been going crazy since my memory is gone I don’t remember names at work I feel like I am drunk all the time

#183 sleepywriter



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Posted 27 September 2011 - 11:26 PM

Hello, everyone! I'm Heather, age 28, from Missouri. I was diagnosed with narcolepsy on 9/12 of this year. I've been lurking on these boards for the past few months and posting in the Help Center section. I just found this other part of the boards and thought I'd introduce myself.

My story is like so many others. I started sleeping a lot in my early teenage years. My dad assumed it was "teenage depression" and took me to the family doctor. I was put on Prozac at age 14. I took it for only a few weeks. The side effects were awful, and I really felt like I was not depressed - just tired. I flushed a lot of pills down the toilet for about a year until my dad took me to a psychiatrist who said I was clearly not depressed. He blamed my tiredness on being a growing teenager busy with sports.

I grew up in a strict household with lots of chores and responsibilities. I learned the exact amount of time required to do each day's chores and figured in exactly how long of a nap I could do. That way, I got my chores done, got a nap, and was awake before my parents came home. It's so crazy to think about it now. I HAD TO SNEAK NAPS!

When I moved out to go to college, I could naps whenever I wanted, so it wasn't as much of an issue. I took two naps a day for several years until I started my career in IT, which is not really conducive to sleep with the weird oncall hours and such. I noticed my daytime sleepiness getting worse, but I chalked it up to stress. Fast forward to about two years ago, and everything was just way too much. I could not nap because I had work, school, and a husband and daughter to take care of. Without the naps, I started to fall short in all of my obligations. I was starting to spend most of my working hours in a mental fog, struggling to stay awake when I should have been working. I fell asleep when I went home when I should have been interacting with my little girl and spending time with my husband. I started falling asleep in class again when I went back to school to finish my Bachelor's degree.

I always had an excuse for my fragmented nighttime sleep and daytime sleepiness. First it was the baby, but she started sleeping through the night at 7.5 months. Then, I blamed my husband's snoring, so I made him go get a sleep study done. Now, he has a CPAP and doesn't snore. Then, I blamed it on the temperature of the room. Then, it was the bed. Etc, etc, you see the point. Finally, one day, I lost my patience with my daughter in the middle of The Home Depot over something so, so stupid. I felt completely out of control at that point because I was so very painfully tired. I finally went to see the doctor.

My doctor gave me Ambien. It didn't work. She tried Trazadone. It also didn't help my nighttime sleep, and it made mornings even worse. She referred me to a sleep specialist. I remember thinking how silly the concept of a sleep specialist sounded. At my consultation, I explained that I sometimes felt like I was unsure of whether or not I was sleep or if I was awake. I was dreaming, but I was also conscious of my surroundings. I told him about how my body feels like it cannot move when I'm falling asleep.

The real epiphany came when he asked me if I ever feel muscle weakness when I hear/tell a joke, get angry, or get startled. My response? "Yeah...doesn't everyone?" LOL I'd never heard of Cataplexy before, and it was something I've lived with for so long that I thought everyone felt it. I've never fallen down. Mine is pretty mild for the most part. At its worse, my head may roll back and I may close my eyes. He still didn't say anything, just jotted down notes and shifted excitedly in his chair and ordered a PSG and MSLT.

The MSLT was really strange. I never felt like I got to sleep in any of the five naps. I felt like I maybe dozed off for a few seconds, but according to the results, I fell asleep in 4 of the naps and had REM in all 4. I guess I walk a fine line between being awake and being asleep, even more so than I ever realized.

The last couple of weeks have been rough. I'm on Nuvigil, and it's been a complicated science experiment trying to figure out dosing that won't make me nauseated, anxious, etc but will also keep me awake. I take 1/4 of a 250mg tab in the morning and another 1/4 about an hour after lunch now. It seems to be helping. In that two weeks, I lost five pounds, had my first ever anxiety attack that I was sure was some sort of heart issue, and had a falling out with my dear old dad who still thinks I'm "just overwhelmed and burning the candle at both ends." I've swung wildly from acceptance to outright bitterness. I've had pity parties for myself on bad days and committed to being an advocate on good days. Thankfully, the last four days have been much more even-keeled.

I'm so glad to have found these message boards. This disorder is so strange, and it's easy to isolate yourself when you know no one around you understands.

#184 narcose.



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Posted 31 October 2011 - 03:19 PM

Hi everyone :) My name is Vicki. I was diagnosed with narcolepsy without cataplexy in January 2010, when I was 17 (I'm now 19). I was in stubborn denial right up until the bitter end of my freshman year of college which was when I finally HAD to admit that no mistake was made and it was time to stop pretending I could do all the things my friends did (staying up late, not keeping to a consistent routine, all that).

I've had trouble sleeping literally since I was born, according to my mom. I remember having hypnogogic hallucinations from the time I was about 3 or 4; they would come and go sporadically and varied in complexity from small spiders on my pillow to several people with raspy, low voices. Sometimes I'd have long periods without any at all and sometimes they'd happen almost every night, but I never thought much of them. I had chronic insomnia until I was about 15, which was when things started to get weirder: I'd either have severe insomnia or I'd sleep more than "normal." The insomnia got much worse until mid-2009 when it gave way to the complete opposite, and eventually I got sent home from school because they thought I was on drugs since I was barely able to stay awake.

That was when my mom took me to the doctor. They drug tested me, which came back clean, and she demanded a sleep study. I insisted that nothing was wrong, but in December 2009 I had the nocturnal polysomnograph and MSLT and, lo and behold, the results clearly indicated narcolepsy. I was already on Vyvanse for ADD, which helped to keep me alert, so nothing really changed as far as treatment goes. Because of tachycardia, my sleep doctor wanted me on Nuvigil in late 2010, so I tried that until I got fed up with it not working that well and not doing anything for my ADD in May 2011. My grades were abysmal, and now I'm back home attending classes at a local community college and trying to get my life together. It's not easy, even without cataplexy (knock on wood), but I'm trying and I will get there :)

#185 nerkie



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Posted 29 November 2011 - 10:02 AM

I've been lurking for a bit, and posting here and there but I figured I'd get formalities out of the way.
My name is Victoria, I live in southern VA and I was diagnosed 7/19/2011, it's a little wierd that all the important dates this year were on the 19th. My birthday is feb. 19th, I was diagnosed on July 19th, I had my first car wreck on Aug. 19th... any ways. I'm 21 years old, going on 22 soon.
I could tell you my long drawn out story of how I was diagnosed with depression, given meds that didn't work but still managed to just be a full time teenager, although with the price of being the butt of every joke within my group of friends. But I don't feel like it. That sentence pretty much sums it all up.
I dropped out of college in 2008 because I slept through every class I had, and flunked out.
I spent the next year and a half living with an on and off boyfriend who was nice enough I guess. I worked, I ate, I slept. Usually in that order.
In 2009 we broke up and I moved back to VA to live with my grandparents and to be near my dad and little brothers. I got a night shift job which was an okay job because I had no trouble sleeping during the day at all. Eventually I got a better job... an hour away. But it was higher pay, full time and had benefits. I still work here. I still work full time, and only 2 people in the office actually know something is wrong with me. After years of hiding my disorder for fear of ridicule or being even more medicated I simply got too good as seeming awake, even when I wasn't.
In july I was diagnosed and all the sudden everything made sense. All my symptoms, everything. So I started Nuvigil... hated it. It made me feel like I had the flu constantly. Then started provigil. Pretty good. Gave me a hummingbird feeling and made me nauseous when I was around food (I love food!!) and it's also really expensive even with insurance and I can't get assistance because I have insurance! So bummer. And when I say expensive I mean my co-pay is $250 a month, which is a lot. Now I've started xyrem... bleh is all i say to that medicine. I don't notice any difference. It helps me sleep I guess?? But I never had any issue getting to sleep in the first place. At least my crazy dreams are pretty tame now. I don't know if that's because of the meds or not, but its nice.
I still work 40 hours a week. I still drive 1 hr. one way. I still particpate in my family life. I still go out with my wonderful boyfriend and I still feel tired ALL the time. But! There is a good side! I remember things! i used to never be able to remember anything, and I still can't remember my past or my childhood or even specific dates most of the time, but I remember things at work. It feels good not to be totally scatter brained!

#186 AmandaM



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Posted 09 December 2011 - 02:39 AM

Hello Hello!

My name is Amanda. I was dx with hypersomnia last week! I'm also a registered polysomnographic technologist (it's weird being on the OTHER side of the hookup!). I have been working 12 hour night shifts for 7 years at my hospital, and I guess it is true... we are the worst patients! I don't know how many patients I have tested that have had positive results from narcolepsy...so many over the years. I decided to get tested since one of our patients didn't show, and what do ya know! I have been exhausted for years, drank 12 cups of coffee prior to my shift, and 6 diet cokes during my shift. I have frequent pvcs (heart palpitations basically) due to the excessive amounts of caffeine that I have been pouring down my throat to stay awake. Our sleep doc rx me Nuvigil 125mg 4 days ago. Day 1 I felt great! I was so awake, so alert, and no problems getting to sleep afterwards. It lasted through my entire shift, and I drank no caffeine! Day 2 and day 3 the pill wore off after 6 hours, and then the crash came. That was the worst feeling. I felt like I was really on something, and I hated that feeling. I woke today exhausted after sleeping for 8 hours. My eyes were bloodshot and my mood was terrible! I called my lab manager and told her I was "bringing this crap back!" ..... After seeing my cardiologist for a followup today, and complaining to him about how awful Nuvigil was, he pointed out that I was possibly going through caffeine withdrawals as well. I hadn't completely eliminated caffeine, but I drastically cut my intake. It's been "ok'd" for me to drink 8 cups of coffee per day for a week, then taper that off by 2cups per week, until I am down to 2 cups of coffee per day. The diet cokes are apparently ok, within reason. I came home, had 8 cups of coffee prior to my night shift. I felt like I was feeling more me than the last 2 days when I crashed. I decided to take half the Nuvigil at the start of my shift, and 6 hours later, the other half. So far so good. We'll see how this works. Posted Image

#187 Ermc26



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Posted 01 February 2012 - 02:08 PM

Hey everyone. My name is Erin, I live in Poughkeepsie, NY. I'm an insurance agent & a waitress. I'm just about to be 22 years old and I believe I am a lifelong PWN. I've been officially diagnosed since June of 2009 although my doctor seems to be questioning my diagnosis. I am part of a set a of twins and My father always told me I was his favorite one to feed cause I just ate, burped, and slept.. quick, easy, and hassle free. haha. As a young child I used to nap in my dinners and during recess, but it wasn't until I was 15 years old & I had Mono that I knew that something was different about me. I was overwhelmingly exhausted for months, more so than I ever had been. I would cry when my mother would try and wake me up for school in the morning and complain that I was so tired & I didn't feel like I had slept when in reality at the time I probably only had 4 waking hours per day. Everyone thought I was "lazy" or "burning the candle at both ends" or "staying up too late", I've even gotten "Are you on drugs?".. It wasn't until my 3rd semester of college that doctors started to say "There's something wrong with you" which was frusterating because at this point I had spent my whole life feeling like this and everyone was telling me it was "normal". Anyway, I had to have vaccination titers done for college and whilst they ran them they also ran regular blood work, I came back with an abnormally high white blood cell count, so I went back 4 times to have my blood retested, same results. From there I was sent to a Hematologist, then I was sent to an Oncologist, so on and so on. It got to the point that I told my parents and my doctors that they could not poke and prod me anymore there was nothing wrong with me. Well in fact there was, I fell asleep while I was driving multiple times and in just 2009, I totalled a car in January, One in March and One in June, from falling asleep. And that's when somebody finally mentioned narcolepsy. Since then I have had difficulty dealing with my diagnosis, for me it's hard to know that I have an illness that feels downright disabling and for my whole life. It's relieving a bit to have some answers but sometimes I feel like it makes me feel like a failure. I did not graduate high school or college, I find I have a hard time trying to work and have been lucky to have some really great, understanding employers and a few close friends and family who now understand why I used to get so upset when everyone was so hard on me for being tired or late. My biggest problem has always been EDS but over the past few years I have noticed mild cataplexy, sleep paralysis, and I know I have automatic behavior. This forum has been a blessing for me. I've only ever met one other PWN & we did not connect or talk about symptoms. And sometimes I feel very alone in a world full of what I want to be, an awake, happy, go-getter with a life and attainable goals. It makes me depressed sometimes to feel like I can't do everything I want to do in the timing that I want to, and that I haven't accomplished even the most basic things. I hope this makes sense. Anyway I better be going, I need to take a shower and try to get some work done today now that it's 2pm and I've finally awoken from my sleep coma. Thanks again guys!

#188 PhyllisJ



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Posted 08 February 2012 - 04:14 AM

I'm not totally new to this forum, but I don't know that I ever actually introduced myself. I first came on here looking for answers, thinking I might have narcolepsy, and praying I didn't. I just got my official diagnosis Monday, and I definitely DO have it...with cataplexy. Looking back over my life, I can see that it's been there for a very long time. I always thought dreaming as soon as I started to doze off was normal. I thought hearing things when I was falling asleep was normal...I didn't think the voices were normal, so I didn't tell anyone. And not being able to walk and laugh at the same time seemed to make sense to me. Being tired all day and having trouble sleeping at night has always been annoying...especially when I was told I just needed to go to bed earlier. The micro-sleeps are seriously annoying...especially on Sundays when I'm supposed to be paying attention, running words for songs, or scriptures. There have been countless times I've gone into automatic behavior and clicked to the next screen too soon...or several screens for that matter. I'm 44 years old, and I finally know I'm not just lazy or going insane. I was also diagnosed with sleep apnea in October 2011. I should start my medication today or tomorrow, depending on when the pharmacy has it ready. Well, it's good to meet all of you, though it would be nice if it were under better circumstances.

#189 Arete



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Posted 25 February 2012 - 02:11 AM


My name is Andreas and I am 29 years old and Danish I was recently diagnosed with N which kicked in when I was 16 in the middle of high school where I went from a straight A average to C due to the fact that my C kicks in when I read! I solved this in college by drinking liberal amounts of coffee, standing up while reading and writing extensive notes as motor activity keeps sleep and C at bay and by my third college year I was back to straight A´s. I also get energy from working out so much that I could maintain a 5000-6000 kcal diet without gaining overly much fat. I have been in psychotherapy for 10 years trying to solve my "depression" turns out it was N, this has actually resulted in a very good life. I have friends, a son and one more on the way and a loving fiance. But right now I am at an impasse in my life. I can´t drink coffee anymore due to an ulcer, I cant exercise and keep up a 5000 kcal diet due to my right knee which is in pretty bad shape from years of 3 hours a day martial arts, so I can only ride an exercise bike and lift weights, which is damn boring and so far no medicine has worked well for me. I can´t have a job without meds or coffee, I can´t study without meds or cofee. I can however write books, and my friends and family have made me take up writing as a profession and I am turning lifting weights into a serious thing. I only have xyrem left as a possible drug, nothing else has worked without some nasty side effects and I am not too optimistic about xyrem either. So I am looking at a 2000$ a month disability check as well as what I might be able to earn as a writer. Not what I dreamed of, just three months ago I was on my way to the UK to study psychology and a career as a therapist and academic, which would have made me 20000$ a month. This is the real sting for me... loosing what I was and was becoming. My old persona and career is gone.

Secretly I am very tired of fighting this thing and I just feel like giving up, playing computer games, and reading novels, which is the only literature I can read without falling asleep. But as a responsible father and role model for my kid I am going to focus on what I am able to do and get the best out of it. Thankfully life has thrown a lot of adversity far worse than this my way so I am going to adapt and master this new situation that I am in.

So I will write 10-20 pages of literature a week and publish a book every half year.
And I will work out for two hours 4 times a week and get a personal trainer.

Funny thing is that N finally made me feel like I have earned a tattoo saying Vincere Aut Mori (conquer or die) as this is really the attitude I need to keep my self engaged in life.

#190 lilbrez51



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Posted 28 February 2012 - 08:52 AM

Hi, My name is Lori and I am new to this forum but not narcolepsy/cataplexy. I was dx. About 6 yrs. ago. The ironic part is I am an E.E.G. Tech an actually did Sleep Studies also.I live in Hermon, Maine and I am in the process of starting a support group here. As far as I know there aren't any here yet. I Love this forum already. I look forward to meeting people especially people in this area. Right now I do not know anyone else with this nasty disease. I will post more later but, can someone tell me how to change things under my profil? (ie. add a pic,) thank-you!

#191 peezy jay

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Posted 13 March 2012 - 01:48 PM

Hi. I'm Paige. I was diagnosed with narcolepsy w/ cataplexy (VERY mild cataplexy though) in 2009. However, I had been having symptoms since age 13 or so (2002-ish).

Other issues include migraines w/ aura (diagnosed at age 4) and orthostatic hypotension & tachycardia.

Like others, my sleepiness was always misconstrued as laziness or lethargy. I was just a typical teenager who couldn't get out of bed... or whatever. By the time I got to college and was trying my best to get a consistent 8-9 hours of sleep at night, however, I knew something was wrong--my sleepiness wasn't getting much better. I got a depression diagnosis from a psych doc (big mistake), and then a year or two later I went to a real sleep doctor. After failing out of music school and losing my job, I got the narcolepsy dx.

Currently, I take Nuvigil, topamax (for migraines), Relpax (also for migraines), and a magnesium supplement (also also for migraines). I have no insurance so I obtain Nuvigil through CephalonCares. The other drugs were hoarded in the past.

I just graduated from university with my bachelors degree this past December with a 3.7GPA thanks to ridiculous amounts of Nuvigil, energy drink, coffee, Relpax, and Vicodin (sometimes all at the same time... btw I was a commuter student). I have no idea what I'm going to do now because my main migraine trigger is fluorescent lights. Between that and falling asleep, I'm pretty sure that I'd get fired quickly.

Sorry if that was all over the place... I have no attention span.

#192 sleepywriter



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Posted 13 March 2012 - 03:05 PM

Hi, Paige! What type of work do you want to do with computers?

You're lucky in that you picked a great field with lots of possibilies. You may even be able to find a position where you can telecommute, which is extremely helpful for people with narcolepsy provided that you have the discipline to manage your schedule while you're at home. It's also one of those professions that requires you to learn a lot of new things and is very hands-on. Finding something you enjoy doing that keeps you engaged is crucial in managing narcolepsy symptoms.

Welcome to the forums!

#193 sweetsurrender



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Posted 24 March 2012 - 11:33 AM

Hi, my name is Mel, I'm 23 and I live in the Kansas City area. I feel like I have been very lucky to get such a quick diagnosis (I can say this now, but it felt like forever during the process). I have been dealing with EDS for almost a year now. I had never had a problem with it before and never took naps growing up except for the rare occasion and then I couldn't sleep at night. I am now remembering several times I stayed up for days with very little sleep in college. Even this past July I took a 13 hour road trip on my own with no sleep issues at all.

Pretty much after I got back from that trip I haven't been the same, I'm pretty sure now that I must have gotten mono, because a few weeks/moths maybe(?) after that I was sick for quite a while, and sleepy all the time. I just thought I was having a hard time getting over a nasty cold, so I tried to ignore it and it would go away and come back. I didn't go to the doctor until Nov and that was because one of my managers insisted. The antibiotics helped a bit, but I ended up going back a few weeks later because I still felt off. They did some blood work, checked for thyroid issues and anemia. All came back normal. When I called and they told me this I was so frustrated, I just wanted a simple answer so I wouldn't be falling asleep at work anymore. I asked her what I should do about it and she told me to wait a few weeks and come back if it was still an issue. I cried on the phone with her because I couldn't handle another few days of this, let alone a few weeks. That was when I first started drinking coffee and redbull. Some days I would drink 3 of the 12oz redbulls with no results. I was still tired and had no energy. Got tested for diabetes and a slue of other things including mono. They found a vitamin D deficiency and that I had probably had mono within the last 6 months. She gave me prescription strength vitamin D and told me I was still fighting mono. I left with at least a little hope, I have heard worse stories about recovering from mono (the friend I visited in Texas had chronic mono and at one point was hospitalized for weeks).

But months later I still did not find relief. I had become a hermit, only going to work and school and would make up excuses when I had the opportunity to go out with friends. I missed two concerts I paid for because I just didn't have the energy to leave the house.

One day toward the end of January this year I was supposed to go to a concert with my brother and a friend. It was sold out which I was relieved because I was the driver and I didn't want to stay out to late. We went back to my apartment and started smoking some pot they had brought. Now I don't smoke that often, but I have no problem with it and enjoy it every once in a while.

The obvious thing about pot is that it makes you laugh, a lot. My brother and I were just cracking up and it was even funnier because our friend didn't get the joke. Queue my first and most dramatic cataplexy attack. I couldn't move, everything I saw was fragmented and I felt like I was flailing my arms around. I did not know what was going on, I was high and I was scared to death. My vision went black and then I started seeing shapes and colors. At one point I was able to talk and started freaking everyone else out. I thought I was having a seizure. My friend thought I was having a panic attack. I asked her to describe what I was doing, when they both answered that I was just laying on the couch not moving I thought they were lying. Finally I was able to ask for water and once I got the bottle in my hand and had something physical to concentrate on I could move, but it still did not feel right for very long. Is it possible that anxiety/fright over a cataplexy attack can trigger a second one?

They debated taking me to the ER very close by my apt. I was scared so I wanted to go but couldn't tell them and just sat there thinking that I hope they don't just ignore it and I die while they are debating how much trouble we would get into because of the marijuana. I do remember that once they started trying to get shoes on me to take me I yelled at them that they were taking too long. I was unable to give the doctors a coherent explanation of why I was there. I remember at one point telling her "I don't think I'm making sense right now." I begged my brother to call our parents and they came down to the hospital. The ER was a huge waste of time (and money), they said that the marijuana could explain all of my symptoms. At first they wanted to make sure it wasn't laced with something else but since no one else had any symptoms they just said it was because I was high. So my parents took me home after being told that I got so high and paranoid I went to the ER.

Luckily my dad is pretty liberal when it comes to social politics and my mother is untrusting of doctors. She has epilepsy and wasn't diagnosed until she was my age. So she pushed to have tests done, and we both thought I was so tired during the day because I was having seizures in my sleep. That night and the next few weeks I had quite a few hypnagogic hallucinations and sleep paralysis which I thought were seizures. When I explained all of this to the neurologist I was surprised when she mentioned narcolepsy as a possibility. She asked me some general questions and I told her I wasn't sure but I think I have had sleep paralysis a few times in the morning. She wanted to do tests for both and even though I was certain I had epilepsy she seemed like she knew what she was talking about and she was incredibly helpful so I agreed.

EEG and MRI turned out normal and the sleep study was rough. I went back after the tests and talked to the physician's assistant for my follow up. She said because I didn't reach REM in any of my naps that I didn't have narcolepsy, saying it was good news. I was devastated because after lurking here and doing more research I was sure this was it. I was diagnosed with hypersomnia and she went over basic sleep hygiene stuff. She focused a lot on my food allergies and even tested me for more. She also talked a lot about how important it is to eat/drink a lot of greens the day after smoking marijuana. I had no intention of smoking ever again and told her it was a non-issue. But I feel like she had an agenda so she went on to tell me I shouldn't be embarrassed and she wished more people in her profession talked about it. I was very dissatisfied with this visit, but she recommended I go to a sleep specialist.

The doctor at the sleep center was quirky, but very kind and helpful. She explained the hypnagogic hallucinations and sleep paralysis (does paralysis always accompany these type of hallucinations?) And the cataplexy--which I forgot to mention that it had happened to a lesser degree at work a few times. But when I started to feel the same way and it scared me so I walked away before things got too serious (hilarious). She said that the sleep lab I went to was not her favorite and since we didn't get a confirmation of REM during the MSLT we didn't have "hard facts" to prove narcolepsy, but with everything that I've told her she was pretty certain I had narcolepsy. She said I could repeat the tests at a better lab and mentioned a spinal tap (no thank you!). But also said that if I decided to take the test again I would have to be off any kind of related medication for 2 weeks, but I couldn't imagine having to go that long with no relief. So she diagnosed me and we are trying some meds to see what works the best.

That was last week. I think I have been so focused on the daytime sleepiness I'm experiencing right now that I haven't had much of a chance to think about the fact that this is a life long disorder that I will have to manage for the rest of my life. Living a normal life and not losing what I have now is taking a priority right now. Hopefully I will get to the point where I'm level headed enough to worry about the future later.

Sorry for the novel, I think this is the first time I've told that whole story. This site has helped me so much already, I am glad to have found it!

#194 songbird



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Posted 15 April 2012 - 09:44 PM

Hi, everyone! I'm Eve, 25, and living in Nashville at the moment. I introduced myself in the Diagnosis forum because I hadn't looked at this board yet. Oops.

I was diagnosed with narcolepsy a few weeks ago. I knew it was a possibility, but I thought of more like a joke. I'm still not sure about accepting this diagnosis. I haven't really told anyone except my best friend because I live with him. His response? "Duh." He's the one who started the joke that I'm a "narco", so he's not terribly phased by all this even if I am.

Part of me is thinking about all my little quirks that could be explained by narcolepsy, and another part of me is thinking that I'm just fishing for excuses, that *I* couldn't have N. I mean, I don't even have cataplexy. I've read that only 20% of PWN have it, but isn't it kind of *the* hallmark of N? I'm skeptical because I was told I had a hearing loss, and I wore hearing aids for more than 3 years. They didn't do a whole lot, and I never had two similar audiograms. Eventually, an audiologist told me that he thought I had an auditory processing disorder. Then he said there's no way to conclusively identify it or treat it and that I was doing a pretty good job of managing it on my own. So I don't want to keep trying to fit myself into something a doctor tells me only to find out that I simply have to suck it up and live. Well, duh.

Still, I'm here, and if treating myself like I have narcolepsy improves my life, I'm all for it. I don't meant to be so negative as a first impression, but this hasn't really been a positive thing for me so far. Well, I have started on some medicines and a set nap schedule that's actually keeping me in better shape at work. There's my silver lining? Haha.

#195 DeathRabbit



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Posted 19 April 2012 - 03:02 PM

Hey all, I'm Bryan and I hail from Huntsville, Alabama. I'm a computer engineer by trade and I used to be pretty awesome at it until narco stole that from me. I now hate my life, my dreams and aspirations have been crushed, and I am completely miserable and without purpose or meaning. Aren't I just a little ball of sunshine ^_^

#196 songbird



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Posted 21 April 2012 - 02:19 PM

Welcome, southern brother! I've lived in the TVA my whole life. I even went to UNA. I hope you get your med problems sorted out soon and get back into life. :)

#197 LucidDreamer



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Posted 22 April 2012 - 02:51 PM

Hello everyone! I'm 23 and live in New Orleans,LA I'm a new user but have dealt with N for the past 10 years of my life. When I was little I had big dreams but now I struggle just getting by. I wish I could say it gets better within time but as we all know their is no cure. If you haven't been correctly diagnosed or put on the right meds, it will get better somewhat. I was diagnosed with N shortly after being put in foster care, which I eventually aged out of at the age of 18. So those of you who have this disorder along with family who support you, appreciate them cause it could be worse. This website has truly lifted my spirits cause the hardest part for me has been feeling alone.I don't know any of you but at the same time I feel reunited with my long lost family.

#198 SleepyRaffie



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Posted 01 June 2012 - 03:10 PM


My name is Colleen and I live in Palm Desert, CA. I was just diagnosed last week at 37, though I have had symptoms for years. I had bought into the whole "lazy" thing until I started falling, hallucinating and having memory loss. Looking back I remember that when I was around ten I would laugh so hard that I would fall down and be unable to get up. I just thought everyone had that. Oh and the HH and SP. Thought those were the norm too. I thought everyone was just as tired and I was weak. Well here I am and it is surreal. Lurking here has really helped me through the last month while I waiting for my sleep study. It was amazing to see others' stories that were so much like mine. I am not alone (though I would not wish this on anyone).


#199 deoir



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Posted 03 August 2012 - 12:35 PM

Hi all!

Diagnosed with IH a month ago. Doc couldn't officially make the N diagnosis since there weren't SOREMs, but he still thinks I have N because of many microsleeps on my MSLT. We both agreed that re-testing isn't necessary since my insurance covers IH too. Lucky me! :rolleyes:

I've been a sleepy zombie since at least my teen years, a little over 10 years ago. Went to the health center at college because I was sleeping through classes and was told that I'm "unmotivated" and was advised to "exercise more." I was a size 2 and walked around 30 minutes every day but I guess the doc wanted me to run 10 miles and swim 50 laps to boot. :blink: Anyway, survived college and got into grad school 2 years ago. :D

Lost my mum to a brain aneurysm last year and in the process of grieving and trying to survive the ridiculous grad school workload plus lab research, EDS and nighttime sleepiness escalated till I was missing a few days of work a month (unacceptable since us grad slav--, er, I mean *students* are supposed to be in lab 40 hours a week on top of classes and exams. My boss prefers 60 hours, but who's counting?). Then SP escalated from less than 5 times a year to once a week. I would be so sure that someone was breaking in but I couldn't move or scream to defend myself.

Sweet new boyfriend insisted I see his PCP, swearing that this PCP was different and would listen to me. He was right! Doc recognized N symptoms and immediately sent a referral to a neurologist/sleep specialist. Now 250mg Nuvigil in the morning keeps my eyes open until it's close to bedtime. B) Too bad it's causing me anxiety attacks and affecting work, but that's a topic for a different discussion.

So happy to meet fellow sleepyheads! :lol:

#200 Megssosleepy



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Posted 13 August 2012 - 02:36 PM

Hello All,

Didnt realize this post existed or I would of said hello sooner... Its been so interesting reading through and meeting everyone... just wish more of you were still around to chat.

Im 28 only found out I had N a few months ago, eventhough Ive been this way for 15+ years... parents never found it werid that I came home from middle school took a nap woke up did homework ate dinner and was happy to go back to bed... :unsure:

Ive only just realized how much stress and such makes my N so much worse! I was trying to have a relaxing day at the river yesterday and was telling a friend of my recent stress, and out goes my legs, they spazed out really bad... Ive had Cateplexy for prolly 10+ years but never really knew what was wrong or even think twice about it... now at 28 its getting bad.

Like most of us I tend to be pretty depressed, it just sucks to be so tired and not have anyone understand. I think the more upset I become the worse all my symptoms are. And in turn the worse my symptoms the more unhappy I feel!

**Here's a question... anyone out there with N not depressed? Or were you at one point and got passed it? How?? :excl:

Edit 11/15/2012

Going to answer my own question... All I needed was some sleep, now that I that I am on Xyrem, and getting a great nights sleep I am no longer depressed... maybe sad (like a normal person) but the depression is 100% gone! Its an amazing amazing feeling!