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#201 manicpanic

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Posted 12 November 2012 - 01:24 PM

Hello everyone. I'm 23 and was "unofficially" diagnosed a year and a half ago after a MSL test, but my doctor wasn't convinced and made me go through some other tests before he'd prescribe medication. I was struggling with narcolepsy symptoms for three years before this, and finally decided to see a doctor with the hopes that I could get some treatment rolling before I started grad school. That didn't quite work out because the official diagnosis took so long, but I got through the first year of grad school. I'm now on medication, finally :) it's been pretty life-changing to finally, for the most part, have similar levels of alertness to "normal" people.

#202 munky

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Posted 30 November 2012 - 01:27 AM

I think I put my intro in the wrong place ... But I'll repeat some of it here. No one wants to have to read the novella I wrote again! Then again, that was more about being diagnosed and how it felt than about me, so you'll probably end up with an entirely new novella. There's your first tidbit about me: I'm verbose. (I love that word!)

My name's Kendra, but I go by 'munky' more often than not. I'm 37, diagnosed with Narcolepsy w/o Cataplexy a little over a week ago now. Looking back at my life, though, I think I've actually been living with narcolepsy for ... well, most of it. I always just put it down to the fact that, from the day I was born (according to my mother), I've always slept better during the day than at night, and the world is geared toward night-sleepers. I've joked all my life that my internal clock was backwards! That's still the case--it's never changed--but I think that in my teens I developed narcolepsy on top of the insomnia and the RBD (which wasn't diagnosed until my 20s, but existed all my life).

I work third shift, 11pm-7am, for now, but in mid-January the company is switching me to a 12-hour night shift. Everyone else is already on that shift, but they let me stay on the 8-hour shifts because I was in school and my classes last until noon. There was just no way I could get out of school at noon and still get enough sleep to be back at work at 7, so I told them I'd just take vacation for the first 4 hours of every shift that coincided with a school day until I found another job. Rather than doing that, they let me stay on the 8-hour shifts to get through school. School ends in a couple of weeks, but in mid-January they're doing a day rotation. Rather than having me switch to the 12-hour shift on certain days and then have to do it again a few weeks later, my boss is letting me ride until then. One bonus is that I'll only be working 3 days one week and 4 the next, so I'll save on gas, but it's going to make taking any on-campus classes almost impossible. Luckily, I can do most of them online.

I decided to go back to school to get my BS in Computer Science. I started college right out of high school, but it didn't work out. I always hated school before, and I still did, so when the job I had at the time started involving more and more hours, I let school go. Now, though, I'm considering a career change. I love to write computer programs, and have done some small stuff for fun, but I think I'd like to start doing it for a living. I love the challenge of it, and the feeling of accomplishment when you work out a particularly difficult problem!

I read--a lot. I read when I'm walking down the hall. The only time I stop reading is when I close my eyes. Even when I'm driving, I'm reading people's license plates, signs, bumper stickers ... People at work are constantly trying to get in my way and make me run into things when I'm walking along reading, or telling me I should be careful so that I don't run into things. I try to explain, but they just don't get it. When I'm reading, I'm focused on something just in front of my eyes, and in my peripheral vision, I can see people, walls, objects, etc. and avoid running into them. If I'm not reading, I'm daydreaming. When I'm daydreaming, I don't see those things, and I run into them. Yeah, bit of a freak.

I am a geek. So is my mother, who is retired and lives with me. We both love geek toys, and I've learned that I can't get a new geek toy unless I get one for my mother, too. At the same time, we live on 10 acres, 9 of which are wooded, and the woods screen the house from the road. We're working on setting up a little hobby farm, where we'll grow our own veggies and herbs. Mom cans--she makes the best apple butter I've ever had!--and cooks and takes care of our two chickens. We also have 6 dogs and 4 cats. And lots of wildlife roaming the property. We named the place Taiben, a name which comes from one of our favorite book series.

Among my hobbies, I've started making hair sticks. I love hair sticks! I bought a few cheap pairs, took the ugly beads off them and put new ones on, with my neighbor's help--she's been doing beadwork for ages. Had so much fun doing it that I decided to start making them and, possibly, selling them online. Figured out how to carve my own sticks with a dowel rod and a Dremel. Now I just need to decide on the best way to finish them, then get some beading supplies and start putting them together.

I also crochet, or used to. After playing rugby a couple of summers ago, I have a few fingers that don't quite bend the way they're supposed to. While they were healing, I couldn't crochet, and I still haven't picked it back up. I will, though, when I have more time, because it's calming and, at the same time, keeps me busy.

Can't think of anything else to add, except: Hello, everyone! It was a great relief to me to find this place and be able to see how narcolepsy has affected other people's lives and what you've been doing to combat it. Thank you for sharing your stories here, and thank you, NN, for setting this up in the first place!

#203 brisleep

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Posted 30 November 2012 - 08:12 PM

Hi,
I'm Brian, aka, BriSleep. Some of the old folks here know me. :-) I'm on my tablet so I can't write a whole bunch, my intro is here somewhere but its probably a year back now. I promise I'll check in more often and even tell everyone what's been going on. Lol! Ok, see y'all soon. B

#204 cloudtalk

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Posted 01 December 2012 - 04:30 PM

I've been on this site off and on for a few months now. But I don't think I ever introduced myself. (If I did, sorry, bad memory.) My name is Emily, I'm 25, and I was diagnosed with narcolepsy in August. I think I've had it since I was 12 or 13. I have told doctors since I was a teenager that I was always tired, but none ever brought up the possibility of a sleep disorder, they just did blood tests for anemia or vitamin-D deficiency, then decided it was caused by depression. And it was true that I was severely depressed. I thought about suicide almost every day. I spend some time in a psychiatric hospital, tried lots of different antidepressants. I ended up on prozac and lithium, still mostly depressed, but at least I didn't think about dying all the time. No one else I met who had depression seemed to have the same problems with constant sleepiness that I had.

I had read about narcolepsy for a couple of years before my diagnosis, and at times I was sure that was what I had, but then it seemed too weird and I thought it must just be my personal failings, or something. So I didn't do anything about it. I have a twin sister, and we have both had sleep problems since we were teenagers, though mine were a bit worse. I mean, she was able to succeed in school at least, while I failed and dropped out of several colleges because I couldn't make it to class. (I think grade school was a different story because I had no choice about going). I mentioned the narcolepsy thing, and she looked into it, agreed we probably had it, and actually did something about it. She got us both appointments with a sleep doctor. In her sleep study, she went into REM in a few of the naps, so she was diagnosed. I didn't go into REM for any of the naps, but I fell asleep in an average of 30 seconds for all five. My doctor noted that I was on lithium at the time, which suppresses REM sleep. (He had me stop taking it with the xyrem.) I know that I often did go straight into dreams upon falling asleep, just not during that study. Looking back, I think I had mild cataplexy, but I didn't know anything about that, so I didn't really look for an explanation. I just felt ashamed. Since I was about 12 I know I avoided laughing or getting angry. It made me feel like I lost control of my body, and like I couldn't speak. I also remember one instance I was talking to a therapist about something upsetting and started crying, and she tried to hug me, and I collapsed. I was super embarrassed and didn't know what happened. Maybe that was cataplexy, I don't know.

Anyway, so I have narcolepsy, and take Xyrem and Ritalin for it, Prozac for depression, Propranolol for tremors caused by the other three. I usually try to avoid taking the Ritalin and Propranolol because they feel so unnatural. I just want to feel awake, normal. I think I still have a long way to go with getting better. I still feel pretty unstable. I feel like I could do so much more, but I can't yet, I have to get better first... Does that make any sense? I'm not sure which parts I can and can't control, and whether I'm not trying hard enough or trying pointlessly to do something that I won't be able to do. I think I need help but I don't know what to ask for or what to do. I find everything perplexing.

I work part time in a coffee shop, and I've been trying to get through college pretty much non-stop since I was 18. At first, I wanted to travel the world, learn languages, and write and translate things. That didn't work out. About a year ago, I decided I wanted to be a nurse. That's still my ultimate goal, though who knows how long it will be before I can make that happen. Trying to understand how being human works is pretty fascinating, and I really do want to understand. Now that I know I have narcolepsy, I'm taking a break from failing/struggling through college, until I feel well enough to go back. Right now I feel pretty down, so I'll probably look at what I wrote here later and cringe. It's crazy how everything can be either great or terrible, and nothing has to change, except my mind.

#205 Megssosleepy

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Posted 05 December 2012 - 03:54 PM

I work part time in a coffee shop, and I've been trying to get through college pretty much non-stop since I was 18. At first, I wanted to travel the world, learn languages, and write and translate things. That didn't work out. About a year ago, I decided I wanted to be a nurse. That's still my ultimate goal, though who knows how long it will be before I can make that happen. Trying to understand how being human works is pretty fascinating, and I really do want to understand. Now that I know I have narcolepsy, I'm taking a break from failing/struggling through college, until I feel well enough to go back. Right now I feel pretty down, so I'll probably look at what I wrote here later and cringe. It's crazy how everything can be either great or terrible, and nothing has to change, except my mind.


Took me 10 years, I graduate on Saturday... take your time don't be so hard on yourself.

#206 munky

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Posted 06 December 2012 - 02:02 AM

Took me 10 years, I graduate on Saturday... take your time don't be so hard on yourself.


What she said! I've gone back to school myself. I took 3 classes this semester, 1 of them online, and the schedule is killing me! Before the diagnosis, I was planning on trying to take 4 classes next semester, since my new work schedule will mean I can't take classes in the summer--summer classes are 2 hours/day, 5 days/week!--and that was the only way I'd get through the first half of my plan on schedule.

Now, though, I've rethought it. I've convinced myself I do not have to get the AS--the stepping stone to my BS--in 2 years, though that is the usual time frame. I do not have to get the BS in 4 years (2 years for the AS + 2 more), also the usual time frame. Instead, I will be trying 2 classes next semester, both online. If that works, I'll stick with it. If not ... I'll go down to 1. I will not, however, stop. It took so much courage to go back the first time, at my age, that I'm not sure I could manage it again when I'm older.

#207 SeeBee

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Posted 06 December 2012 - 03:07 PM

Good luck to all of you with your college, and congrats to Megssosleepy on your graduation! Cloudtalk/Emily, I'm in a similar boat, and agree with the others to go easy on yourself. Working and going to school is stressful enough without narcolepsy (or so I'm told,) and even just one class per semester will eventually get you there if you stick with it.

Hello by the way, I'm Carrie. I was diagnosed with N+C back in May 2004, and after a bit of a struggle finding the right medication I've found myself here. After nearly 2 years Xyrem's working out pretty well for me, despite a rough start; I take 4.5g per dose, and while it does make me pretty anxious, it's cut back significantly on my cataplexy and EDS. Notice I didn't say "cured" or "stopped." I still do have cataplexy attacks, but I'm down to maybe 1 or 2 mild-to-moderate episodes a week, instead of the 4-5 full collapses I was having per day when I was off meds - and you know what, that's good enough for me. I only need one half-hour nap a day to stave off EDS now, too. I don't take any other medications, and am lucky enough to have a sleep specialist who respects that choice. I figure that this is as good as it gets without turning into a walking pharmacy :P

I'm kind of geeky/nerdy; I spend my days playing World of Warcraft, knitting/crocheting/cross-stitching, and Googling random things on the internet for the sole purpose of learning about them. (I also read and watch TV, but those things tend to put me to sleep, so I don't do them as much.) I also garden and bake when I get the chance. I was in college, but left after Spring semester; I've been bored of it for a long time, and have way too many fields of interest to narrow down into one little major right now. I'm planning to go back someday, though I don't know when yet. I also travel quite a bit; usually to visit my fiance and his family in Toronto, where I'll eventually be moving, but I also occasionally visit New England, Florida, and Washington state to see family and check out what life is like there. One of these years I'll expand my horizons and visit another continent...

It's a pleasure to meet you all, and even though I've got everything mostly under control, it's such a relief to find others who know and understand what I go through every day! Hope to see y'all around :)

#208 Elli of Nod

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Posted 08 December 2012 - 06:04 PM

Hey there everyone. My name is Elli and I was diagnosed in June of this year (2012) with narcolepsy with cataplexy. Even though I'm 29 now, it's been suspected I've been displaying symptoms of narcolepsy and cataplexy since I was a preteen. I've always had to stay intensely focused to keep myself from falling asleep in class: multitasking, bouncing my leg, doing stuff that makes it look like I'm not paying attention...yet I'm always right with the teacher or professor. Driving, I'm always singing or doing math games to keep my mind active....I never really gave much thought to all the things I do....though if I failed to do these things I would lose my place. I would get to wherever I was going or finish whatever task I was doing and not know how I did it. That would always unsettle me, but I didn't think about it too much. I've never had a full body cataplectic attack, but upon being startled or frightened, I do have the tendency to become increasingly clumsy as my legs go numb and jello-like. Still, I just thought maybe I was making too big a deal about these things and besides...I didn't want to admit that I was tired...all the time. It was bad enough I got sick all the time with fevers and infections.

I didn't know I had a problem really until I was without insurance and I was taking jobs that would disrupt my sleep cycle so very badly that none of the coping mechanisms I had developed throughout my life were helping anymore. The feeling of being exhausted all the time was worse than ever and I was constantly over come with jelly legs and shakes and heavy limbs. When I was able to get a job with insurance that had steady hours, the situation improved a little, but I knew the day that I fell asleep at my desk and hit my head on the keyboard that I had to get this looked...lots of blood work, changes in diet and exercise, and playing the game with my doctor from January to May finally got me a referral to a specialist and a sleep study. After being diagnosed and trying to find the balance of Nuvigil and Xyrem that work for me, I'm actually feeling better than I have in years. I've only gotten one infection since I've been getting better quality sleep and only one bout of exhaustion fueled fever during a rather traumatic time. I'm going to go back to school this January and work to secure my Masters, and perhaps eventually I will go for my doctorate in education, specializing in statistics and measurement. I am nervous about it, but I'm actually able to look forward more than just a day or two for the first time in what feels like ages.

#209 J718

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Posted 09 December 2012 - 01:35 AM

Hi everyone! I'm Jessica, 37, diagnosed with narcolepsy/idiopathic hypersomnia about a year and a half ago. I've taken antidepressants since 1994 and can't go off them, which is why my diagnosis isn't 100% certain. There was nothing very remarkable about my overnight sleep test but the MSLT was a completely different story. I fell asleep during every nap in under 5 minutes and had a lot of trouble staying awake between naps. I never entered REM but that's not surprising given the antidepressants I'm on (Wellbutrin, Cymbalta and Trazodone.)

It took about 6 years and 12 doctors to get a diagnosis. Since I have chronic depression, most doctors tried to blame my tiredness on that. I couldn't seem to convince them that what I was experiencing was a whole new level of sleepiness, and that it was getting worse and worse. I ended up with a diagnosis of chronic fatigue syndrome—never mind I didn't fit the symptoms. I ended up going to a rheumatologist who treats CFS patients, and she was the one who finally suggested I should get a sleep study. By the time I got the study done, I was in such bad shape that I had a complete breakdown and had to go on disability for 2 months. My brain was so foggy that I really thought I was going crazy. I had so many incidents of automatic behavior that I didn't know what I was doing half the time.

I do struggle a lot of the time. I'm impressed by all the intros I've been reading—I can't imagine how I'd be able to work and go to school or hold down some of the difficult jobs you guys have. I'm a magazine editor. It doesn't sound so stressful, but we're very understaffed so I do about 3 people's jobs. And because you have to work on several issues at a time, the job is pure multitasking—something I'm terrible at now. I take Adderall but it helps just so much. I'm looking for a new sleep specialist right now who I hope can help me improve. The one I was seeing seems kind of clueless. More of an apnea guy, I think. He doesn't seem to know what to do with me.

I'm glad I found this site because 1) it's taught me so much about narcolepsy (which helped me realize how crappy doctor is!), and 2) no one I know can relate to this experience. It's been very isolating. People have mostly been supportive but they don't get how bad the tiredness is and what it does to a person's quality of life.

#210 thereisnodanaonlyzool

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Posted 19 December 2012 - 11:48 PM

Hi, I'm Jamie. I'm a mess. I've had HH since I was 8. I'm now 31. I once left a letter for the "aliens" asking them if they were going to take me at least the could cure me. :/ I also have a constant headache for the same amount of time and get migraine and clusters on top of that. The only treatment that makes that manageable is Vicodin and muscle relaxers. I was diagnosed with EDS about three years ago but I had a sleep test prior to that which showed my REM pattern was backwards. They wanted me to stay for the MSLT but I had another appointment to keep and no one had told me that I needed that second test. My doctor had me on Pro-vigil but the insurance said it worked the same as Riddilin which made me jittery. So I went off both. In the last year or so I gotten worse. I had a sleep study scheduled but I had to cancel because of a sinus infection. I will be rescheduling after the new year but my doctor gave me sample nu-vigil until then. I haven't been day napping since I started the NuVigil but I still feel beat up. I also take Ambien and Valerian at night to try and keep me asleep. I only get about 50% sleep efficiency. I also have Mixed Connective Tissue Disorder (which means my joints hurt),Immune Deficiency(most of the year I'm sick and I get an IV once a month), asthmatic, allergic to most of the normal stuff and a few foods, anemic, vitamin d deficient and I'm a Thyroid Cancer survivor. As you can see I've seen many doctors in my life and I was looking around on here for some comforting words of wisdom and maybe sometimes a shoulder to cry on.

#211 munky

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Posted 20 December 2012 - 01:57 AM

Hi, I'm Jamie. I'm a mess. I've had HH since I was 8. I'm now 31. I once left a letter for the "aliens" asking them if they were going to take me at least the could cure me. :/ I also have a constant headache for the same amount of time and get migraine and clusters on top of that. The only treatment that makes that manageable is Vicodin and muscle relaxers. I was diagnosed with EDS about three years ago but I had a sleep test prior to that which showed my REM pattern was backwards. They wanted me to stay for the MSLT but I had another appointment to keep and no one had told me that I needed that second test. My doctor had me on Pro-vigil but the insurance said it worked the same as Riddilin which made me jittery. So I went off both. In the last year or so I gotten worse. I had a sleep study scheduled but I had to cancel because of a sinus infection. I will be rescheduling after the new year but my doctor gave me sample nu-vigil until then. I haven't been day napping since I started the NuVigil but I still feel beat up. I also take Ambien and Valerian at night to try and keep me asleep. I only get about 50% sleep efficiency. I also have Mixed Connective Tissue Disorder (which means my joints hurt),Immune Deficiency(most of the year I'm sick and I get an IV once a month), asthmatic, allergic to most of the normal stuff and a few foods, anemic, vitamin d deficient and I'm a Thyroid Cancer survivor. As you can see I've seen many doctors in my life and I was looking around on here for some comforting words of wisdom and maybe sometimes a shoulder to cry on.


Two things:
1) There are shoulders aplenty here. Look around. Post a question, or a reply to someone else's questions. Don't be afraid to jump right in. We may not all be able to understand what life with all of your medical issues is like, but we can at least understand the sleep issues, and we can sympathize with the rest.
2) Love, love, love your handle!

#212 Arrow2

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Posted 08 February 2013 - 09:29 PM

My name is Andy and I am about a month into all of this stuff. At first i was relieved because i finally had a reason for being freaking exhausted all the time. After i saw things like "life-long" and that there is not any treatment for the cause, only the symptoms, my relief went away replaced by dread. My biggest concern is about my career -- i don't know if i can do it anymore. I guess i dont really know what to expect but it's good to have this forum to come to. I don't have an official narcolepsy diagnosis yet but i did get diagnosed with hypersomnia.



#213 puzoozoo

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Posted 04 April 2013 - 05:18 AM

Hey guys,

 

My name is Ziad, i'm 21 and was diagnosed in 2007/8. My narcolepsy is fairly unpredictable so my symptoms fluctuate which is rather annoying at times. I didn't know there was a Narcolepsy Network until about 10 minutes ago so, naturally, I had to join.

 

Looking forward to speaking with you guys and browsing the forums which hopefully will help me not only connect with people who have the same daily annoyances as I do, but also perhaps with how to better my lifestyle :).



#214 Mmartens3

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Posted 18 April 2013 - 10:36 AM

Hi, I am a 33 yr old female. I was just pre diagnosed with N last week. I am awaiting a sleep study.i have been struggling with fatigue/ EDS since I was a teenager. I began falling asleep in class in middle school even though I seemed to be getting enough sleep. My grades began to drop. I had a couple of SP/HH episodes during childhood. I have always found it very difficult to get up in the mornings. I have never really felt very rested. In high school things didn't get any better. My mom took me to the dr. But he didnt find anything wrong with me. He told my mom that it could be depression. She didnt think I was depressed so she blew that off. But she didnt pursue any other diagnosis either. A year or so later when I began getting into trouble with friends I was then diagnosed with depression and put on Prozac. I had a couple of HHs in my teens. i told my mom about it and she freaked out and said it was demons. At age 17 I got pregnant and stopped taking Prozac. My mood improved because I was excited about being a mom. EDS didnt improve much. I never took the prozac again. I began having more frequent and rather frightening SP and HH episodes around age 20 that have continue to this day. I am not as frightened of them anymore. At age 22 I enrolled in college. It was very difficult to keep up. I could never keep up with reading the text because I would always fall asleep. I would sleep in class no matter how hard I tried to stay awake. The kids were in daycare and I lived close to campus so I would come home and sleep between classes. After graduating, I tried to work a few part time jobs but it proved very tiring especially because I was dealing with two you children, one of which had severe discipline issues. I eventually got a full time job at age 26 but I could not keep up the workload. I worked very slowly and everybody else seemed to be going in fast motion. I would get extremely sleepy in the afternoons and would doze off in front of my computer. The only way i could get enough sleep to barely manage was to put the kids to bed at 7:30 and to be in bed by 8:30 or 9:00. I only worked full time one year. 3.5 yrs ago (age 30) after the birth of my third child I was diagnosed with hypothyroidism and put on meds. My symptoms have not improved. 1.5 yrs ago I gave birth to my baby girl who has Down syndrome. My EDS dramatically took a turn for the worse because of all the stress and I also developed a chronic daily headache. My EDS is debilitating as some days I just feel like laying in bed and doing nothing. I have a fog over me all of the time that makes it hard for me to focus. I homeschool my older children. I have a nurse who comes to our home to help care for my baby girl and my mother in law cares for my son two days a week. Even so, It is vary difficult to keep up with the homeschooling. and my husband wants the house to be spotless and a home cooked dinner on the table every night! I feel like I am not able to adequately care for my family. My husband and parents dont understand what i am going through. they think i am just stresses and depressed. sometimes i feel like sometimes they think i am lazy and irresponsible. I need to get a handle on my symptoms. I am not taking any meds for N yet (not officially dx yet). I drink sodas to get me through sometimes but the caffienne gives me anxiety and keeps me up at night and just makes things worse for the next day. Anyway, that's my story.

#215 h.wynn

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Posted 18 April 2013 - 10:57 AM

Hi Im Heather,

Im 41 and was dignosed in o3. I have been tired sence 1st grade. So I figure I have had Nw/C for over 30 years. I have Four Kids 2 grown and 2 pre teens.

#216 cmanbrazil

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Posted 27 June 2013 - 08:49 PM

46 years old and tired. I was diagnosed with Sleep Apnea a few years ago.  The CPAP machine seemed to work for about six months and then I went back to being tired again.  It was nice while it lasted.  I went back for another sleep study and they had me stay half the next day to do a day study.  Come to find out this was to determine if I had Narcolepsy.  I remember on about my fourth nap the sleep person looking puzzled when I said I wasn't falling asleep.  The fifth time she came in she unhooked my mask from the machine and left it running.  I thought she was crazy.  Then she came into my room and brushed her teeth in my bathroom.   :o Next thing I knew I was walking through a door and I was back in college :wacko: .  I think everyone knows where this is going -rated PG btw.

 

I thought Narcolepsy was for people who fell asleep in the middle of driving or a conversation.  In my brain, I never took naps.  In my brain, laying around, listening to music and having vivid daydreams were normal.  It was the most enjoyable part of college.  I would spend weeks in my dorm room listening to music, daydreaming, and for me that was normal.  I quit grad school with a 3.8 gpa. I always worked under duress at the last minute, but after awhile that quit working. Friends would try and keep me working and all I wanted to do was daydream or keep moving.  I used to run, walk, anything for movement to keep me awake.

 

After college i got a job working with kids.  I may have sat at a desk for an hour a day.  The rest of the time was spent dealing with difficult youth, full of colorful emotions.  they were my stimulants.  

 

Sleep is calling but I will come back for part two.

 

The best thing to happen to me recently is finding this site.  I do have people that love me but none of them understands or really has the wherewithal to help me figure this out.  I suffer in silence, except for here.  I hope to see everyone in Atlanta.  I need the pilgrimage because my doctors have little to offer.

 

While i am depressed now i keep looking for the rainbow.



#217 squirrel!

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Posted 23 August 2013 - 05:33 PM

Hi there.

 

  I'm Melissa. I'm 31 and a stay at home mom. Daytime fatigue has impacted me since I was about 15. Been diagnosed over the years with ADD (took Adderall briefly in college) Hypoglycemia, depression (didn't have), and migraines. I also am lucky enough to have a crappy back and have intermittent issues with that- including muscle weakness. I have been tested for every thing under the sun- vitamin deficiencies, Mono, etc. All tests normal.

  I did a poly a few weeks ago to look for UARS. had no RERAs, but lots of arousals and PLMD. I redid the poly last week as well as the MSLT. Anxiously waiting my results. (eeek!)

  The more I learn about narcolepsy, the more I am sure it fits me. So many aspects of it make complete sense. I am so hopeful this time. Just for answers. I have been fighting this battle (with a supportive husband, thank goodness) for years. I am so done.

 

Right now I am exploring the cataplexy issue. I have tons of muscle weakness which I always attributed to my back. I am unsure now. So much to learn!

 

I really enjoy reading the stories of others, thank you to those of you who have shared!

 

Melissa



#218 Benjaplexy

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Posted 24 August 2013 - 05:12 AM

Hi all,

 

I'm a 21 year old gay guy from the UK, currently studying in Scotland.

 

I went to my doctor the other week for some dry skin cream, and I came out with a referral to a neurologist! He suggested I got checked out for narcolepsy pretty lightly a few months before, and I brushed it off at each visit until he eventually told me that he is pretty sure I have narcolepsy and should really be trying to get help.

 

I underwent cognitive behavioural therapy unsuccessfully twice before for my 'anxiety', which involves muscle weakness and occasionally a graceful collapse. I always wondered and asked why it happens when I don't feel anxious beforehand, and why I'm having anxiety attacks when I'm just having a really good time, haha. I guess cataplexy could be my answer…

 

I feel in control of my naps, really. When I go out to clubs and such, I do tend to find a spare 10 minutes to shut my eyes in a toilet cubicle (classy!). And I sleep twice a day on my commute to my summer job. And I did sleep at a noisy festival the other week on the ground. Haha and just on Monday I somehow ended up sleeping on a park bench. And the other day I fell asleep during foreplay (he was massaging me—far too comfy!).

But the naps are most of the time a conscious choice. I think "ohh I'd love a good few minutes" and then take them where I can. I am always tired, everyone always comments on how tired I look, which is really annoying. But it might just be because I always like to be having mini adventures in my mind. And maybe I just enjoy napping a bit too much!

 

Anyway, I get sleep paralysis probably once a week, but I don't tend to hallucinate much during, and I know how to wake myself up from them usually. And I do hallucinate when falling asleep, and I have pretty intense and crazy ones sometimes if I wake up in the night. I do have sleep apnea, mildly (this is how this all started). And I daydream… is it napping to have an intense daydream and completely be in another world? Because I'm pretty sure that's just normal life, as my eyes are open? I can't really figure out how much of this is something to worry about, and how much of it is just me being me.

 

Anyway, sorry about this. If there's anyone from the UK, please please send me a message. I'm desperate to meet someone who can be a friend who understands this. Even if it turns out I don't have narcolepsy, it'd be good to have some comfort before I get this appointment with the neurologist.

 

Thanks for reading, 

 

B



#219 Jessicasa

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Posted 14 September 2013 - 11:29 AM

My name is Jessica I am a 23 year old female living in TN. I have experienced symptoms for years but was not officially diagnosed until half way through college 3 years ago. I am currently taking Nuvigil to help me function on a daily basis. I have never really bothered to understand what it is/does until recently because my symptoms have started to get worse, almost to the point of terrifying some days.

#220 Narcoleper

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Posted 04 October 2013 - 02:20 AM

I'm Jake, 23 year old from Texas. Not only am I new to this whole network thing, I was diagnosed with Narcolepsy with cataplexy just a couple of days ago. My family and I have always had a strong suspicion that's what it was, since I have been this way my whole life. Mostly characterized by my EDS and sleep attacks, I also have what I would consider very mild cataplexy, automatic behavior, memory lapses, trouble focusing, sleep paralysis. Been managing life pretty well with no medical help, except I've had too many close calls to count with driving - that's why I decided to turn myself in. Currently taking 250mg Nuvigil, which has minimal effects, and my doctor wants to put me on Xyrem, but I'd rather not submit myself to such a controlling drug - looking for other solutions to make driving safer.

I'm still trying to find my way around this sight, and I haven't fully caught on to all the acronyms and lingo used, so please bear with me. Thanks.