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A Narcoleptic Tells All

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posted on Jan, 23 2013 @ 05:31 AM
After reading this thread I was appalled, wounded, and ultimately frightened. It is no secret that I have narcolepsy. Most of you have heard of this neurological sleep disorder and already know what it entails. Surprisingly, or perhaps not surprising at all, there are many who still believe it is a myth, an imagination, and/or a serious case of laziness, apathy, and lack of motivation. This includes some physicians as well—some believe it is psychological and temporary.

I know that the ATS crowd knows better though. Just in case you have not heard of narcolepsy, it is a very real sleeping disorder that results in extreme drowsiness with secondary symptoms such as sleep paralysis and cataplexy (waking paralysis. I thank God everyday that I’ve never had a cataplectic attack.) Even worse, the disorder is incurable at this time and the prevailing methods of treatment are dubious in their effectiveness.

Excessive daytime sleepiness. People with narcolepsy fall asleep without warning, anywhere, anytime. For example, you may suddenly nod off while working or talking with friends. You may sleep for a few minutes or up to a half-hour before awakening and feeling refreshed, but eventually you fall asleep again.

Narcoleptics feel an irresistible urge to sleep, even at inappropriate times. This urge often overtakes the narcoleptic and the physiological need for sleep wins the struggle. This symptom is called EDS, or excessive daytime sleepiness, and it dramatically affects all areas of the narcoleptic’s life. And that’s really what this thread is going to be about: my experience with this most sinister, debilitating, yet subtle of diseases.

I won’t presume to bore you (oops, too late!) with the causes:

Hypocretin (hi-po-KREE-tin) is an important chemical in your brain that helps regulate wakefulness and REM sleep. People with narcolepsy have low levels of this neurochemical in their spinal fluid. It's particularly low in those who experience cataplexy. Exactly what causes the loss of hypocretin-producing cells in the brain isn't known, but experts suspect it's due to an autoimmune reaction.

the implications:

Narcolepsy may cause serious problems for you professionally and personally. Others might see you as lazy, lethargic or rude. Your performance may suffer at school or work.

the numbers:

It is estimated that narcolepsy affects as many as 200,000 Americans, although fewer than 50,000 are diagnosed. Narcolepsy is as widespread as Parkinson's disease or multiple sclerosis (MS) and more common than cystic fibrosis, but it is not as well known.

or this mother of all lies I stumbled across:

medications are very effective

So, why am I making this thread? Well, as I stated already—the correlation between flu vaccines and narcolepsy is incredibly troubling to me as I know firsthand how awful it can be to live with this misunderstood sleeping disorder. It really is one of those things that must be experienced before it can be empathized. Incidentally, I hope NO ONE has to walk a mile in my shoes! I wouldn't wish it on my worst enemy.

To various degrees and in different ways, this sleeping disorder has changed my life—and none for the better. I am very passionate about spreading awareness for this disorder in the hopes that it will save someone the anguish and sorrow it has caused me. Even if this thread doesn’t relate to you personally, perhaps it will help change your view on someone you know who may develop this disorder. And most importantly, hopefully we can avoid a nation of narcoleptics by spreading awareness about the possible vaccine correlation.

Okay, now that all the formal stuff is out of the way, I am going to tell you the nitty-gritty of my life as a narcoleptic.

I was not diagnosed with narcolepsy until I was in my first year of college. I often wonder about how different my life would have been had I had an earlier or later diagnosis. I’m not sure if it would have made things better or worse.

As far back as I can remember I was always very tired. I was one of those children who always fell asleep on a car ride. I fell asleep on the drive to school nearly every day while I was in elementary school. I played little league baseball and often fell asleep on the car ride to practice. Many times I begged to sleep instead of having to go play baseball (which I loved playing.)

As I got older I tried combatting this tendency to sleep in the day by attempting to go to sleep earlier. It didn’t work. At one point I was living with my estranged father and his new wife. I had 2 stepbrothers that I shared a bedroom with. I always fell asleep to the sound of them talking to each other in the darkness. I always woke to the sound of my stepmother yelling to wake me up. I would usually awake mid-sentence and instantly fall back asleep before I could even move…only to be awoken by more shouting.

I was living between three households at this time. I was living with my (evil) stepmother during a few days of the week, with my mother on her days off, and with my dad’s parents for the weekends. My dad was and still is a truck driver and was never at home.

On the days that I spent away from the stepmom, I napped after school before starting on my homework. I wasn’t allowed to nap with my stepmom around. By the time I was 12, I decided I wasn’t going to stay with my stepmother anymore and I didn’t care what anybody had to say about it. I put my foot down on this issue and reduced my households to my grandparents and my mother. I was now free to nap everyday at anytime.

I had this enjoyable routine of falling asleep on the way to school on the car ride, and coming home to fall asleep during a rerun episode of Star Trek TNG. On the weekends I invited friends for sleepovers. We would generally stay up all night drinking pepsi, watching TV, playing video games, or having marathons of board games like RISK. This is when I started to suspect that something was NOT normal about me.

I noticed that after a night in with the friends, I would sleep for about 12 hours straight. I always just blamed it on a night of sodas and video games. But then I noticed that none of my friends needed to sleep for this long. They were awake and active several hours before I would wake up. Many times they would attempt to wake me so we could continue the good times as only teenage boys know how to.

Eventually my friends started taking off and heading home before I awoke. They had learned not to wait for me—they knew I would be sleeping well into the late afternoon. I was always very apologetic for neglecting my duties as host and felt really bad about not seeing them off or not offering them breakfast, or not being able to give them my company.

After I graduated the 8th grade I spent a lot of the summer sleeping. I fell into the habit of staying up all night and sleeping all day. No one could wake me. It was not unheard of for me to sleep until 3 or 4PM. I was then diagnosed with cancer just prior to my first day of high school. You can learn a little more about that here:

So, during those years of cancer treatment, the issue of my sleeping habits naturally fell to the wayside. Incredibly, I remember complaining a lot to my doctors describing my problems. I told them how I was very tired all the time, that I took short naps periodically, and that I struggled to balance my sleep cycles. The docs usually brushed it all off and went straight for Occam’s razor touting, “Your body is dealing with cancer and chemotherapy. I’m not surprised you’re always tired.” More about this later—

In retrospect, yes, I had some very bad habits as a teenager. Heck, even before I was a teenager I had very bad habits. No one ever set a bedtime for me. No one ever told me when to go to bed. In fact, I was often shocked to hear of my friends’ parents imposing a bedtime on school nights. I usually just stayed up watching Nick-at-Nite or something until i dozed off. I had never heard of such a thing until living with the stepmom; a policy I would later rescind. I readily abused this lack of parental discipline in the summers, staying up until the wee hours. It’s not that I especially tried to stay up late. It’s just that I never felt tired at nighttime. I had a few naps during the day and would be most alert in the night. Those were my peak hours—and it came into play a little bit later with work and school.

Even in the more structured walls of the children’s hospital cancer ward, I continually found myself sleeping all day and being awake all night. This was especially difficult to excuse because this hospital had very strict meal times. I would often miss out on meals while I was sleeping (this is because you had to physically call in and order the meal yourself at certain times. Patients were not automatically served.) I often slept through the doctors’ daily rounds and missed out on my own progress reports. I usually slept through activities such as visitors, recreation, social gatherings etc. But, again...due to the nature of my illness it was not much of a surprise to anybody that I was sleeping so much.

Amazingly, miraculously—I beat the cancer in only 3 short years and was ready to attend my senior year of high school. I was well on the path to recovery but narcolepsy would strike back with a vengeance now that I was getting older and entering the realms of adulthood AKA responsibility.

During my senior year, I was late to class EVERY…SINGLE…DAY of the year. I just couldn’t seem to wake up when I needed to. I would hit my alarm clock and instantaneously fall back asleep for 20-30 minutes…sometimes an hour (interestingly enough, this tendency to immediately fall back asleep upon awakening is one of the diagnostic methods to identify narcolepsy.)

For the year, I had 2 morning classes: ceramics and fabrics. Since I had most of my academic requirements satisfied with home schooling, I pretty much only had electives to deal with. The ceramics teacher (go figure!) didn’t mind when I showed up late and he didn’t bother whenever I would fall asleep in the corner of the room with a lump of clay in my hands. The fabrics teacher was very strict on enforcing the school’s tardy policy—and if a hall monitor type didn’t see me on my way to class as I snuck through the halls, my fabrics teacher would rectify the oversight by writing me a citation.

Needless to say, I had lunch detentions at least a few times a week. I eventually accrued so many detentions that I started getting assigned Saturday school periods. At one point I was called to see the principal and vice principal. They were very stern looking over my records and said things like, “Don’t you take your education seriously? Why can’t you show up for school on time?”

My response was a very sober and honest confession “I…don’t know. I want to be here. I care about my education, but for some reason I can’t seem to wake up when I need to.” It didn’t matter that I was on the honor roll and had the highest grade in anatomy & physiology class in the entire school. They still treated me as a hooligan and made an example of me with detentions and Saturday schools. Looking back, I kind of wonder why they never asked me to see the school counselor or anything.

I tried my luck at dating a bit while in high school. The closest thing I ever had to a relationship didn’t bode well. I had actually missed a few key dates due to oversleeping or falling asleep prior to the date. It’s very difficult to explain to someone that you fell asleep instead of keeping an appointment with them. It’s something that would affect my future social life and relationships with my family.

I didn’t care though. I was on the fast track to higher education and was determined to shine through despite my adversity. My first semester of college I managed to get hired on the night crew stocking groceries. I loved that job actually. It was easy and peaceful—it had only one drawback. I was only getting about 4-5 hours of sleep a day. I would work my shift, come home and take my nap, go to class, study for an hour, and then go back to work. I didn’t last very long doing this and had to resign.

I was starting to blame and loathe myself for my failure. My grandfather who practically raised me often told stories of being a full-time college student and a full-time employee. He even managed to find himself a wife, have 4 kids, and build a beautiful home. After all, it was that kind of work ethic that made him into the well-to-do successful man that he was. I was determined to emulate him, but could only attack myself for not being able to follow in his footsteps.

I continued to struggle with my sleep needs. My body simply didn’t behave like a normal person’s body. It was entirely unpredictable. Sometimes I would sleep at night, sometimes I wouldn’t. Sometimes I could wake up, sometimes I couldn’t. Sometimes I slept for 4 hours and sometimes I slept for 18 hours! Sometimes I would be clear-headed and energetic (rarely,) and sometimes I would be incredibly drowsy and foggy-minded. There was just no telling how I was going to feel from a day-to-day basis.

I also complained to my doctors following up my cancer treatment that I was often lethargic and had trouble keeping a healthy and consistent sleep routine.

I heard a lot of suggestions from doctors, friends, and family. I was told all the trite platitudes like not to drink coffee, not to watch TV an hour before bedtime (whenever that would be, I could never tell,) to exercise in the mornings etc. Yeah, it all sounded good, and I made very honest and practical attempts at these lifestyle changes. I had a mindset that it was ME that was mucking up my sleep habits (and to a degree, yes, it’s true.) But, no one seemed to understand what I was going through. I didn’t even understand the culprit here—all I could do was blame myself.

I tried hard. I really did. I made so many lifestyle changes in the hopes of fixing my sleeping cycles and daily fatigue. I ate healthier, I exercised periodically, I meditated.* I was attracted to the supposed side-effect of increased energy. (*I will explain why I didn’t feel this beneficial side-effect a bit later.)

I eventually found another job that seemed to suit my needs. It was a part-time position that only offered 5 hour shifts. It seemed perfect at the time, and for a while it was. But I don’t have to tell you that the nature of part time shifts include unpredictable schedules. I hope you see where I’m going with this.

On any given week I was asked to work at 6AM to unload a truck or to help close the store at 10PM. My work schedule was highly unpredictable, changed from week-to-week, and spanned a wide range of hours. I tried explaining a few times to my boss how difficult it was for me to have such a work schedule that encompassed early morning and late evening shifts bookending my class schedules. She simply told me to “take it or leave it.” I never complained again about work scheduling and somehow pushed myself through it (honestly, I’m not sure how! I remember that it was a very difficult and exhausting time of my life, but it seems like such a blur now…even though it was only a few years ago.) My grades in class suffered as a result.

In fact, I was again showing up late—or not at all—on a regular basis. I had at least two professors who gave me a barely passing final grade (this was when I was doing the overnight grocery job.) Whether I truly deserved that D+ or not is still a mystery to me. I am quite sure I bombed those courses and did not deserve the credits I received from them. I was struggling to complete assignments on time. All I cared about was when I was going to get my next nap. It was like being in the grip of an addiction. I didn’t even care about college or work anymore, to say nothing of living a life and having a family etc.—all I wanted was one long, undisturbed nap. That became my only aim in life.

I had one class that ended at 9PM. I was driving home one evening and nodded off while behind the wheel. Luckily I woke up as I started to swerve into a ditch and took control of the vehicle. I had fallen asleep for a few brief seconds and it could have cost me my life—or the lives of others. This was the one and only time I have fallen asleep while driving. That isn’t to say I haven’t had to drive while tired ever again. Nay, my life often demanded that I drive while half-awake.

Probably since I was about 12 or 13 I had suffered from frequent sleep paralysis. I usually kept it to myself. I didn’t know what it was the first few instances of experiencing it, but it didn’t take long until I heard the medical term and scientific explanations. Unfortunately, I never made the connection between sleep paralysis (a common symptom of narcolepsy) and narcolepsy itself. I suffered many years from this frightful phenomenon, but was never able to connect the dots that would reveal a sleeping disorder.

For years I would wake to the sound of the alarm clock and instantly fall back asleep, or into a sleep paralysis episode. When I finally did wake up, I would roll out of bed and rush to class—sometimes without showering or brushing my teeth, or putting on fresh clothes in the hopes that this would be the day that I finally didn’t show up late. In high school, being late meant lunch detention—in college, it meant the more benign penalty to my overall grade. As much as I tried to prevent this embarrassment, I never showed up to a class midterm or final showered and groomed in all my time spent in college.

Don’t worry, it’s not like I never showered and groomed—it just seemed to be on important test days that I was especially tired. Perhaps the added stress caused me to be even more tired than usual.

I started to live in this very surreal paradigm—life was but a dream to me, but hardly merrily, merrily. I seemed to just drift incoherently from one activity to another: work, school, bed, work school, bed. I would fall asleep while watching hockey games, while reading textbooks and taking notes, and while in the break room at work. In high school, I was known to fall asleep during band class while the brass and woodwinds were rehearsing their parts.

I couldn’t figure out if I was biting off more than I could chew or if I was actually that lazy heap that so many thought I was.

I followed up with my doctors every 3 months, which is standard routine for a few years concerning cancer patients who are in remission. At every appointment I said the same thing, “I’m always tired. I can’t sleep when I need to and can’t stay awake when I need to. No matter how much sleep I get it never feels like I have energy.”

I saw different doctors during these appointments—they were a group of pediatric oncologists that all worked together. One particular appointment I met with a doctor that I had not met with very often. He heard my complaints, looked through my charts, and said, “Hmm. I see you always complain about these symptoms. It’s been a few years since you’ve had any cancer or chemotherapy. I wonder if you have sleep apnea.” He was the first person who ever suggested that I might have a sleeping disorder. I had literally seen dozens of doctors and made the same complaints.

He set me up with an appointment to have a sleep study. I was diagnosed with narcolepsy and put on medications for it. Because one of my problems was that I couldn’t sleep at night, I was prescribed sleep aids as well as stimulants. Believe it or not (and as paradoxical as it sounds) insomnia goes hand-in-hand with the fatigue and drowsiness of narcolepsy. Think of when you are very exhausted but can’t fall asleep—this is typical for some narcoleptics.

The neurologist/ sleep specialist I met with explained to me that the quality of sleep I get looks superb on the charts. In fact, he even went so far as to say that non-narcoleptics wish they could sleep as soundly and deeply as I did. BUT that it was the narcolepsy that wouldn’t let me feel these benefits. He explained that all the sleep and deep meditation in the world will NOT override the effects of the narcolepsy.

So, now I had a diagnosis, but a whole new set of problems. It finally clicked! It all finally made sense. I had a sleeping disorder. I finally had an excuse! I could finally blame something! I didn’t have to attack myself anymore! I even went back to my old high school and talked to the ceramics teacher about it—how I always felt really bad about showing up late and falling asleep at times.

That became my anthem. I started saying it so well and so often that I wasn’t even sure if I meant it anymore. At the end of the semester I told a few college professors the same old line, “By the way, I meant no disrespect to you or to the class by showing up 15 minutes late everyday blah blah blah.”

Yes, I had a diagnosis that explained why I was feeling the way I did all those years. But it has been a struggle to undo the role model my grandfather had set for me in the past. I started wondering if the diagnosis had become a crutch for me. It seems like any failing I have at this point I could almost trace back to my narcolepsy. “If only I were more rested and energized. If only my sleep habits were consistent and predictable. If only…if only…”

If only I were normal I could have found another job, put more effort forth, went to graduate school and achieved my dreams.

I walk a tightrope. On the one hand, I now know I have a debilitating neurological sleep disorder. I know my limits and capabilities much better now than I did before. But on the other hand, I find myself more reticent to make ambitious goals. I find myself walking a fine-line between self-defeatism and pragmatism.

At this point, I have almost given up looking for a career. I live at home with my mom and am financially dependent on her (you don’t have to tell me I’m pathetic—like I don’t know that I’m pathetic.) I have applied for disability (I have other severe medical issues in addition to the sleep disorder.) It pains me everyday that I stay at home at her expense. I still believe that hard work is the way and that it pays off. And yet, here I am, jobless—doing no real contributory work. My sense of self-worth is anemic, but at least it's not catastrophic like it used to be.

I don’t really know what to do with my life. Creative writing is one of my interests, but I usually don’t feel motivated to write. I have given up on my dreams. I doubt very much I will be the academic presence I always wanted to be. I don’t see myself in any prestigious positions. I would be happy in entry-level work but have proven almost incapable of holding a full time job. I can do the work, but I can only seem to do things on my own terms, in my own time. My ability to function diminishes over time. This has really become a moot point though as I have failed to even get past the applicant stage. I have not had an interview since I lost my last job and applied to countless dozen places.

When I turn off the alarm on my clock, I naturally sleep for about 12 hours in a 24 hour period. Additionally, I can only stay awake for about 10-12 hours before falling asleep again. And of course, there have been instances where I’ve stayed awake for 40-50 hours and finally had to take some drowse-inducing anti-histamines just to finally feel sleepy (this isn’t as common, but I experience this at least a handful of times a year.)

While awake, I am usually extraordinarily groggy. I have tried just about every medication used to treat narcolepsy. I have tried faithfully for about 2 years. I found the side-effects of the medications to be intolerable and the benefits negligible. I gave up entirely on conventional medicine—meditation and alternative treatments weren’t able to relieve my drowsiness either. I have made drastic dietary changes purported to cure all disease, but have felt no improvements.

I have been unable to forge lasting friendships and maintain familial ties. I can’t tell you the number of times I’ve either canceled or unintentionally slept through a get-together with friends. I can’t tell you the number of times I have made a lunch-date with grandma and never showed up because I was unable to wake up. Sometimes I simply couldn't sleep the night before, or sometimes I just couldn't be up at the designated hour. I have stopped trying to make any appointments whatsoever. I’ve never been able to keep them—so, it is just easier not to make plans with anybody than to let them down.

Clearly, I have been through a lot. I want to cite a post I made earlier that will sum up my feelings on narcolepsy:

I do not say this lightly about narcolepsy. I am a cancer survivor and had a 3 year bout involving half a dozen major surgeries and 8 high-dose chemotherapy regimens. I have an autoimmune disorder that attacks the neuromusculature. Left untreated, I will be totally, permanently paralyzed head to toe. I have had attacks where I have been unable to even lift myself out of a chair. I donate a unit of blood (which is not viable for transplant) every 2 weeks to reduce the dangerously high level of iron in my blood (hemochromatosis.) I have had to have hip surgery because steroid treatments (prednisone) have completely deteriorated my femoral hip joints.

After all I've been through--none of that compares to the daily anguish of being hopelessly, incurably drowsy.

My very username is an allusion to my conflict. Buddha means one who is awakened, but the narcoleptic in me just wants to sleep. I just want to feel rested. To the narcoleptic, sometimes even the very act of being awake is a discomfort. I have no sense of belonging. I have no identity or role in society. The only thing I know for sure is that I really want to have one glorious, golden nap. I patiently await that day with hopeful verve.

So, now that I’ve disclosed all this what should I say? Should I say to love one another and not take a single day for granted? Should I say to think and act positively and to trudge through all the muck no matter what? Yes, I probably should say these things because this is what I practice—I don’t know if it has brought me any peace, clarity, or enlightenment though.

Oh yeah, and don't forget to practice good sleep hygiene.

Maybe my determination to uphold optimism is my last and only method of defiance.

And don’t feel bad if you fell asleep while attempting to read this bombastic, trite, and exceedingly dull onslaught of inconsequential text

edit on 23-1-2013 by NarcolepticBuddha because: (no reason given)

posted on Jan, 23 2013 @ 06:13 AM
Well that was quite depressing.

Hope things workout for you.

posted on Jan, 23 2013 @ 07:17 AM
Bless you for being able to share this, and noteably, being an excellent writer, as well.

I have always wondered if I have some form of sleeping disorder, and your descriptions sound so much like periods of my life. The only refuge I had was coffee. Huge cups, 32oz McDonald's drink cups are my coffee cup. I fit the coffee grounds for an entire pot along with a 6 for the water on my coffee pot, into one 32oz cup. I drink one, maybe two on my days off. Workdays, which I really work at night and have since 1993, I have 3, sometimes 4 cups. I can then go home and go straight to bed.

On nights we are busy, I am fine. I like it best that way, because if I am busy, and have something to focus on, I manage to stay awake. On nights when it is slow, it is a serious struggle. I find my eyes start to droop, my head nodding forward, and it is everything in my power sometimes to stay awake. I have things, though, that motivate me.

Most importantly, is my work ethic. It's just wrong. I refuse to make excsuses or allowances. This goes well with the rest, however. I work in a central location, very visible to a lot of people, supervisors, peers, customers. If I sleep, or even get caught nodding off, it's serious. I could lose my job. I really love my job, and I really need my job. If I lost my job, me and my husband would lose everything.

I am a smoker, and I have to quit soon to have a large spinal fusion. However, our hospital campus is non-smoking. I get two 15 minute paid breaks, and one 30 minute unpaid break. On my unpaid break, I go to my car and drive across the street to McDonald's tosmoke. I don't eat there, I go to smoke. I chain smoke 3 cigs to get my nicotine fix to make it through the rest of the night. Sometimes, though, I drift off in my car. I am terrified that one night I will go for my break, and fall asleep in my car, and not wake up until sunrise or later. I have even had nightmares about it. So far, I have avoided any incidents at work, and I have been there 11 years in February. I think it has much to do with the amount of caffeine and just fear if losing my job.

On the other hand, I only work 3 nights a week. After my 3 nights, I sleep like nobodies business! I come home, fall asleep by 8 am, sleep till my husband comes home, get up long enough to eat some dinner and chat a while. Usually, I am asleep again by 9pm, and sleep all night, and all day the next day. I wake intermittently to go to the bathroom, maybe get on ATS for an hour or two, then right back to sleep.

I continue this on and off pattern until I go back to work again, usually sleeping all day, getting up at 5 or 6 pm, staying up till 2 or 3 am, then sleeping the rest of the night and all day the next day.

I have little productive time, and am disabled. I also take some heavy duty pain meds. Part of the reason for my fitful sleep is pain in my hips and back that wakes me. I tend to blame the pain and constant waking on my sleep problems, as I rarely sleep more than 2 hours straight. I will sleep 2, wake for 1, sleep 1 1/2, wake for 3, and so on.

I have fallen asleep with food or drinks, or cigs in my hand. The only time I allow myself to give in is when I am at home. Never anywhere else. I know this isn't due to the pain meds, as I I am quite acclimated to taking them, and the problem started before I began taking them.

I, like you, also experience times, sometimes days at a time, that I cannot fall asleep at all. I have to take Ambien, and even then, it only helps me fall asleep, but not stay asleep. I still do the fitful waking/sleeping pattern.

The odd thing is, even though my my pain meds are narcotic, they have a tendency to make me very wakeful. I am very vibrant when I take the med, and then when it starts to wear off, I battle severe sleepiness. I have to struggle until the next dose. I take the meds every 6 hours, and it wears off after about 4. At work, coffee and being busy gets me through, but at home, I just allow myself to nap.

This all started for me about the age of 25, and I am 49 now.

I know that when it gets to that unresistable stage, I have to force myself to get up and walk, go grab some icewater, go chat with someone, but just do something. I can browse ATS from work, but not post unless it is from my phone. Usually though, reading is something that can make me sleepier, unless it is something really exciting, or stressful, like a good scary book or a great monster thread on ATS.

I have never told a doctor, I am scared to for some reason. I have just dealt with it. Not even sure if my symptoms correlate, but I can really relate to so much of what you said.

I am not going to be one to offer advice, or try to tell you things you should do, as what works for you is what you are doing. I will just say this, if something doesn't feel right about your decisions, ask yourself why. Then, ask yourself if it is something you can change if you really wanted to.

Thanks again.

posted on Jan, 23 2013 @ 07:57 AM
reply to post by Libertygal

Thanks for sharing. Be sure to take a quick browse at some of the links I have provided. Or just take a quick glance at some symptoms of sleep disorders--there are many of them. Some disorders, like sleep apnea, are usually very easily treated, while others, like narcolepsy, are not. If you are able to (they can be costly) ask your general physician about having a sleep study done...or ask if you are at least a good candidate to have one done.

As I said, I am glad I finally have the diagnosis (In fact, I was actually diagnosed twice, by two different sleep specialists, with 2 different sleep studies.) I got the second opinion because I found all of the medications to be useless...I convinced myself that I might have another sleep disorder that they missed.

It turned out that the meds and treatments are just really I reached out to other narcoleptics, they only confirmed my suspicions about the overall ineffectiveness of the treatments.

Ambien didn't do a darn thing for me. It'd make me woozy for about 5 minutes and then the feeling passed. I have even been prescribed very potent hypnotics (sorry if this is crossing T&C boundaries) that didn't really keep me asleep for more than 2 hours as well.

Narcolepsy works like this: the brain is totally confused about its sleep cycles. It doesn't really know when it needs sleep and when it has had enough. It gets its signals confused. This is why sometimes I can sleep for 18 hours or stay up for 2 days straight and never yawn once. The narcoleptic brain is really just clueless as to what it needs. This is also why meds seem to compound the's only adding other signals into the mix that the brain isn't very good at dealing with in the first place.

Trust me, I've tried 'em ALL.

I live by a similar creed as you. I have tried all my life never to make excuses or place the blame on anything/anyone for my shortcomings. But honestly, sometimes my desire to sleep has overridden any desire to achieve. It's hard to ignore such a compelling physiological need as sleep.

I believe even Maslow's "hierarchy of needs" places sleep right at the very first step before other goals can be actualized. I pretty much tripped over the first goalpost

My only recommendation is to spring for a sleep study if you can (remember, some sleep disorders are effectively treatable)

OR to keep as positive as you can and not let it bring you down. I don't advocate any stimulants in any way. I don't drink coffee or energy drinks (which I despise!) I have found that any stimulants simply make me anxious, jittery, and wired without actually removing the sense of drowsiness and fatigue. In other words, stimulants only make me feel WORSE...if you can believe it.

I am so sick of this "energy drink" culture. I hate this mentality that says, "Hey, whatever is wrong with you, we have an energy drink for that in 5 delicious, heart-palpitating flavors. If you're tired, then sleep is the last thing you need!"

edit on 23-1-2013 by NarcolepticBuddha because: (no reason given)

posted on Jan, 26 2013 @ 06:16 PM
reply to post by NarcolepticBuddha

My stepbrother has had narcolepsy since age 15-16, after he had surgery for a torn ACL. It's not in my stepmom's family or his father's family that we know of, but It's more than likely that the anaethesia must have caused it.

Could it be possible that along with the Pandemrix, there is a substance that might cause narcolepsy/cataplexy?

I've also ask this to other ATS members who know more about medicines

posted on Jan, 26 2013 @ 07:12 PM

Originally posted by TheToastmanCometh
reply to post by NarcolepticBuddha

a substance that might cause narcolepsy/cataplexy?

Would you care to say a few words about how this has affected your stepbrother?

And honestly, I'm not sure about the connection between anesthesia and narcolepsy. In fact, this study on flu vaccines is the first instance I've ever heard of a medication that has triggered narcoleptic symptoms. Granted, it has been said that the individuals who developed symptoms AFTER exposure to a medication probably carried some of the genetic markers found in narcoleptics.

It is a bit of a mystery for sure. I, myself, have tested negative (I don't carry it) for all 3 KNOWN genetic markers. And that's the key right there. As my doctor has always said, it just means that I don't carry the genetic markers they know about, and that there could be other complex sets of genes at work here.

The best indication so far is that narcolepsy is caused by an auto-immune response that attacks the hypocretin- secreting cells that help regulate sleep/wake patterns. I believe I have had narcolepsy since I was very young. I definitely showed many symptoms of it from a young age. It was not until later that those symptoms became identified and recognized.

I cannot say one way or the other whether anesthesia may have been the culprit. I'm not sure any doctor would be willing to make that conjecture either. In the case of the flu vaccines, the vaccination may simply trigger that auto-immune response in those individuals with the genetic predispositions that results in the loss of hypocretin- secreting cells.

Was your stepbrother clinically diagnosed with a sleep study? Narcoleptics will show a very distinguished pattern in their polysomnographies and MSLTs. It is very easy and accurate to diagnose.
edit on 26-1-2013 by NarcolepticBuddha because: (no reason given)

posted on Jan, 26 2013 @ 07:39 PM
What a brutally honest and well-written post.
I can't say that I know what you feel like, as my only troubles are that I have recurring insomnia.
So I only know what it's like to be extremely tired while attempting to be a functional person.

I read your whole post, but I still may have missed something.
I was wondering, have you ever been able to correlate any events that cause your number of narcoleptic events to increase? I mean, the way it's portrayed in media, sometimes there are triggers. Like excitement, or negative stress.

To reiterate though, I think your writing abilities could lead to something for you. something that would allow you to work when you want. Have you looked into offering up your talents?

posted on Jan, 26 2013 @ 07:58 PM

Originally posted by spacedoubt
I have recurring insomnia...So I only know what it's like to be extremely tired while attempting to be a functional person.

I was wondering, have you ever been able to correlate any events that cause your number of narcoleptic events to increase? I mean, the way it's portrayed in media, sometimes there are triggers. Like excitement, or negative stress.

Have you looked into offering up your talents?

1) It sounds to me like you understand enough
Attempting to function while drowsy is what we do. There is a great forum website for narcoleptics and they all claim this is the most difficult part of being a narco--finding a way to prosper in society while being labeled as lazy and unmotivated.

It sounds like a paradox, but I suffer from insomnia every now and then as well. However, the one thing that always remains is the drowsiness. Whether going through a spat of insomnia or hypersomnia, the drowsiness never goes away.

2) I have tried, yes, to figure out what might be causing these shifts in insomnia, drowsiness--and the overall shifts in my circadian rhythms (sleeping in the day one week, sleeping at night the next etc.) I have not been able to find anything that makes a difference. I've tried all the clinical medications used to treat it. I have tried coffee, energy drinks, and other stimulants. I have made drastic dietary changes over the years. I have taken up all forms of alternative methods (such as relaxation and meditation techniques etc.)

The next step for me is to keep a "sleep journal." I want to log every day, what I ate, what my mood was, what activities I've done etc. etc. In the hopes of finding some pattern or correlation.

My drowsiness persists day in and day out with no real improvement. However, everybody will feel the symptoms differently and have a different experience with their narcolepsy. Some narcos experience cataplexy, but some do not. It affects everybody in a unique way. Some narcos are relatively functional, (in fact, it is estimated that some never even get diagnosed due to the mildness of their symptoms) while others require a live-in nurse to make sure they don't have a sleep attack while walking, bathing, cooking etc.

3) You're very kind to compliment my writing. Honestly, I am just an amateur when it comes to prose. I dabble in creative writing, yes, but I assure you that what I write about my personal experiences is never fiction. I do spend time writing. I have written a few essays lately and am trying to compile a memoir of sorts. Whether it will ever be completed is anybody's guess.

Ultimately, I'm not sure how to get involved in writing and not sure that I have faith in my ability to do so. What I mean is...I still have a long way to come with my writing
I still have a lot of growing to do as a writer before I can take myself seriously.
edit on 26-1-2013 by NarcolepticBuddha because: (no reason given)

posted on Jan, 26 2013 @ 08:20 PM
reply to post by NarcolepticBuddha


Well you see, stepbrother used to play football in 8th-9th grade, and was in great condition until one game he tore his ACL. Took him to the hospital and got him patched up.

About....maybe two weeks after his surgery, he started sleeping more and more, usually when he came home after school or on the ride there. This kind of irritated my stepmom, as the boys were known to stay up late and wake up in the afternoon. But then the sleepiness got more frequent and they did a few sleep tests on him, and found that he had narcolepsy. They put him on Xyrem I think it's called to keep him awake, but it didn't really work that well (as it was a low dose). Then one day, while I was at my mom's from an after school thing, I hear word from my dad that stepbro collapsed while washing dishes and woke up a bit later, not knowing what happened.

Another series of tests, and it turned out he had the Narcolepsy/Cataplexy duo. He's on medication for it now, and it's somewhat controlled, but unfortunately, he lost his license after getting into a car crash, gained a good 30-40 pounds, and still has sleeping episodes during the day.

posted on Jan, 26 2013 @ 08:32 PM
reply to post by TheToastmanCometh

Interesting, and I appreciate you sharing. Do you know if he tested positive for the known genetic markers? I wonder if he always had it but it wasn't identified until his symptoms became more apparent. Remember, I had the same problem with being more active at night and more drowsy during the day as well. The circadian rhythms of the individual sometimes go out the window. However, it is my understanding that the symptoms of a narcoleptic are relatively unchanging through the life of the individual. For example, it's not very likely for me develop cataplexy at this point.

I'm very sorry to hear about the cataplexy that your stepbrother must endure. It is a nightmare (no pun intended) that I can't even imagine. Sleep paralysis is bad enough! But to have spontaneous, waking paralysis must be devastating. I read about some lady who had a cataplectic attack while walking down a public sidewalk and got mugged in broad daylight because she couldn't move or respond.

Thanks again for sharing and I send my best wishes to your step-bro.
edit on 26-1-2013 by NarcolepticBuddha because: (no reason given)

posted on Jan, 26 2013 @ 08:41 PM
reply to post by NarcolepticBuddha

There are sites that pay for piecework. You submit, and they pay you if they use it.
Trouble is, it's really hard to sort through and find ones that are not only legit, but also offer up decent pay for your work. That makes it hard for me to recommend any specific place. It would take some work on your part to sort the wheat from the chaff.
Your narcolepsy however, might give you an advantage in some instances. If you wrote from that angle, you would have an expertise that others don't.

posted on Apr, 26 2016 @ 08:53 PM
a reply to: NarcolepticBuddha

Great post. Thanks for sharing. I can relate to every bit of what I just for the exception of having cancer. Glad to hear that you pulled through that.
I found out about 4 years ago that I have narcolepsy and sleep apnea (cns). I'm at my wits end with this crap. Before reading your post, I thought I was the only one that was dealing with this in how you described it. Thanks again for sharing.

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