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For years I would fall asleep for no explainable reason. I was a bad grouch if someone tried to wake me. I remember this starting in high school. When I went to college I had to take a nap after my part-time job and sometimes I would sleep through dinner. I even slept through a date once. Never even heard the phone ring when he tried to call me to see where I was... It was difficult to wake up in the morning to get to work on time. I drank coffee like a fish but the effect was only momentary. It became a joke by the time I was 30 I could drink a cup of coffee before bed and it seemed to put me to sleep. The problem became so severe around age 37 that I was sleeping through the carpool hour and was repeatedly late to pick up my children. At around age 47 I began to experience severe concentration problems. I became "toxic" and a doctor suggested an allergy test. Walla!!! I was very allergic to soy. And since soy is in everything especially the non-dairy creamer that I had been using in my coffee for 20 years I thought I had found the solution! I also found out that I was allergic to strawberries and that is what caused the toxicity. I cut out soy which means almost no food other than fresh. The problem improved but I still fell asleep at street lights, in the kids carpool line and on trips. I had to take a two hundred mile trip in two days staying at a hotel and sleeping midway. I started asking doctors again. I began waking up with horrible headaches and in a total brain fog. One doctor suggested it had something to do with degenerative disc disease. Go figure! And then a wonderful and VERY smart neurologist suggested it might be sleep apnea or narcolepsy. I went to the hospital and had the sleep tests done. Yes, I have sleep apnea. After a month on the "machine" I was waking up without the headache and the fog but still falling asleep and tired. Yesterday I started a prescription of provigil. And it works!! I am so excited ! I am AWAKE!! I have been tested for diabetes, thyroid disease, you name it. I have gained 70 pounds and went to Weight Watchers. I have limited my meals. I have joined exercise clubs. My husband has called me a lazy fat-----slob. He just knew I was a hypochondriac and said he was going to have me put into a mental institution. So while I am dealing with my inability to stay awake I am dealing with his mood swings! I hope that others learn from this story and improve their quality of life by making some changes that I wish I had only known to make had I had the knowledge sooner........

After 12 long years of trying to figure out what was wrong with me, I have been finally diagnosed as having narcolepsy. Over those years I have suffered from constantly being tired, sleepy, no energy to do much, and over the years it has gotten worse. And to sleep was miserable. As I would fall asleep, I would have very vivid dreams, and sometimes wake up. But I thought the vivid dreams were normal to everyone. During that time, I have been on ever SSRI there is available, various other psychotic medications, and even anti-anxiety medications. I was sent to therapy to "talk" about my problems, when the only problem I had consistantly was that I was always tired, no matter if I slept 14 hours, or 4 hours. Therapists would tell me that I had to want therapy to work, and I had to try. I was told many cruel statements such as "You shouldn't stay out every night partying, you need to stay home and get some sleep", although I had been home every night and never stepped foot out the door. Categorized as being lazy because I wouldn't do laundry, or the dishes. Being told that I needed to get out more and do something. I even at one time had a psychatrist give me a Rx for Ambien for better sleep. The first night on the medication, I woke up and I was hallucinating, and immediatly went back to the Dr. the next day. He told me and I quote "Well, why dont you just try talking a walk before bed, or drink some warm milk, or try reading a book" and then refused to give me another Rx. All these years, Dr's have been trying to give me CNS depressants or sleeping pills to make me sleep better, only to make matters worse. Over time, I would grow tired (not a pun) of trying so many different medications to help my sleep, waiting weeks until the medication was suppose to take full effect, and I would just give up and stop taking the medication. I felt like a guinea pig. Then I moved, and now that I have children and a single mom, it just grew to be too difficult to have a normal life with kids. Before I had children, I could sleep when I was able to, or felt like I needed to. If I didn't get much sleep that night, I could work thru it the next day. I went to see a psychatrist, which took me close to two and a half months to see an actual doctor, as here in NC, due to their mental health care reforms, I had to run the gauntlet of waiting to get a screening at a one stop referral mental health clinic. I had to wait six weeks to get that screening. They referred me to a private mental health clinic, which took three weeks to get an appointment to see a psychologist. He referred me to a doctor at their clinic, which took me five weeks to finally see a psychatrist and to finally get a Rx. He initially perscribed Sonata, which did nothing for my sleep pattern after two weeks. Then he perscribed Seraquil, which did make me sleep without any awakenings, but I could not tolerate the side effects after being on it for three months, and my refills had run out. So I made an appointment to see the Dr. only to find out he had been terminated. So it took me another three weeks to make an appointment to see the Dr. that had replaced him, going all that time without medication. On our first meeting I told him I could not tolerate the Seraquil side effects and he perscribed Remeron. I finally had a good nights sleep and stayed asleep, as the side effect is like a narcotic, but it is not. I had a scheduled appointment three weeks later, and I told him that I could not sleep without waking up, but I was still tired all the time. That I was tired if I had 4 hours sleep or 12 hours sleep. That I would awaken tired. Then after about an hour I wouldn't be so tired, but it would again hit me again about three hours later. I was sleepy, I was tired, too tired to do anything. He perscribed Provigil. My insurance company does not cover Provigil. So, I had to wait a week to get a temporary approval before the perscription was filled. My Dr's office is finishing the paperwork so that I may have the medication, since my insurance does not cover it. I am on medicade. I have stayed home since I was four months pregnant with my first child, then when that child was six months old finding out I was six weeks pregnant with my second child, which was about the time the children's father and I split up. I have been a stay at home single mom since then (my children are now 14 months old and 28 months old) living on child support and the "system". I did attempt to obtain employment and hold it but I found it just too difficult to have a "normal life" due to my sleep problem. I have been on Provigil now for five days. 100mg in the morning for the first week, with an increase to 100mg twice a day after the first week. I still take the Remeron in 30mg at bedtime. An interesting side effect of the Provigil has been it curbs my appetite. While on the Seraquil and the Remeron alone, I had HORRIBLE munchies, gaining quite a bit of weight. I have noticed that I dont have the munchies anymore, and my appetite has infact decreased. Due to the difficulty in obtaining the Provigil I did some research on the drug, which led me to researching narcolepsy. When I read the four criteria for it I about dropped. The symptoms of narcolepsy describe exactly what I have been suffering for YEARS. I though everyone suffered from vivid dreams as they were falling asleep, I thought it was normal. I had the constant tiredness. I had the wakenings in the night from the dreams. I have the automatic behavior. Perfect example, trying to clean house I would place a cleaner perhaps on the counter. A few minutes later I would search all over the house because I could not remember where I put it. Or I would be in the kitchen thinking I need to get something out of one of the kids rooms, and begin walking in the kids rooms and stop to think, why am I here? It's kinda like driving and missing your exit. You are fully functional, but you kinda "forget" or get fuzzy minded. It's like being on auto-pilot. I use to describe it as fading out to foo-foo land for a few minutes. I have found that the Remeron still helps me to stay asleep, and so far on the Provigil it keeps most of the "sleepyness" away. Taking the once a day dose, I still have the overwelming sleepy urge, but was able to shake it off after about 10 minutes, kinda like a second wind kicking in. And I still feel somewhat tired. I'm hoping that the two doses a day takes care of that. I have an appointment in seven weeks from the initial percription of the Provigil for a med review. I can not tell you how much frustration I have been thru. I will tell you that I even committed myself for six weeks one time to figure out what was wrong with me once and for all., about three and a half years ago. During that six weeks, I was on eight different combinations of medication. I was a guinea pig. The Dr wouldn't even wait for the effects of one to wear off before giving me something different that same day. I finally just gave up and discharged myself. I came out worse than when I went it, and it seemed like it took close to two months for all the side effects of the medications to wear off. From people to tell me to shake it off, or you need to get out more, or you need to stop running around so much at night (which I never did, and have never done illegal drugs), you need to get off your lazy butt and do these dishes, or the guilt from not having the energy to even play with my children when I wanted to. Mind you, I always made sure the children's needs were met, from three home cooked meals a day, to play, to clothes, to baths. But that alone would totally exhaust me where I could do nothing else. To the point where if I needed to go somewhere that day, a Dr's appointment, to the grocery store, it was so much to handle. I couldn't go out again, as I would be totally exhausted. I could only do what I call "one major thing" a day. Which I finally realized going to the store to get groceries shouldn't be a major thing. Running to the corner gas station to pick up a gallon of milk shouldn't be a major thing. Going out to get the mail shouldn't be a major thing. It's not that I have a social phobia or anti-social, it's that it's just too tiring! I have to dig deep down to find that energy. Where people sometimes get only a few hours of sleep one day and are tired and listless from that, I have that EVERY DAY no matter how much sleep I get. As I sit here and type this I am growing a bit sleepy, and bear with me if I ramble on, have typing errors, or just seem to have a poor communication of what I want to say. It's horrible. I can only hope that the Provigil works. I want to feel "normal" again and enjoy my time with my children, to be able to work again and give them everything that I want to give them. The thought is now bringing tears to my eyes as I know something is wrong with me, and I want to know what it is! I dont want to feel this way anymore. I don't want to feel tired all the time anymore. I don't want people to stereotype me as being lazy. I'm tired of being tired every day of my life! Almost every waking moment! Life like this is miserable. And I can only hope Provigil will help be obtain that life. I don't want to continue to be a part of the system. I have 10 years experience in the IT field, I feel like I'm wasting time, and I want to be able to do that again.

hiya, my name is charlene, im 19 years old and i started feelin sleepy all the time about 4 years ago. i kept goin to my doctors and he sent me for blood tests, they checked me for my liver function, sugar levels, iron levels, even to see if i was pregnant they all came back negative so i just got told i was lazy an to go on a diet, do some exercise things like that. about a year and a half ago i started having really bad dreams and i couldnt explain to my mum that i was awake because i could see my bedroom while i was seeing other things. i would end up going into my mums room several times through the night frightened to death to go back to sleep. when im trying to sleep i have a really loud noise in my head, i can hear my heart beat in my head. sometimes after a few minutes of me lying ther i'll go to get up and find that i cant move, but now i know im sleeping. when i can move if i get out of bed straight away my legs and arms are really weak and my vision is a bit "wobbly" if u like. i cant watch any horror movies because i end up seeing them when im asleep. the exorcist is the favourite for getting my in my dreams, i sometimes wake up crying. when i do have a night without dreaming i only sleep for about an hour then im trying to get back to sleep for an hour so i hardly have any sleep. my mum thought all this was rubbish an thought i was posessed haha i know it sounds funny, she was ready for getting the priest in to have the house blessed. all the girls an i went for a meal after work and one girl caught me by supprise and made me laugh, we wher crossing the road, i dont remember falling just sitting on my knees in the middle of a main road. this has happened a few times now, ruined a few pairs of pants! back to the doctors i got refered to the hospital had tests, it showed my brain was asleep after only a few minutes. i started off on 200mg of modafinil but it was like my body got use to it so they put it up to 300mgs. im now on 400mgs an still fall asleep through the day. i have tablets to take at night now clomipramine i take 20mgs of this, it calms me down alot and i only have 2 maybe 3 dreams a week. my mum trys to understand but i know that she doesnt really. i cant travel on my own because i fall asleep on the bus or train, its a nightmare in itself. im leaving work at the end of the month because its too much, she cant understand what its like an thinks im probably still bein lazy.i cant carry on work because im doin things half asleep writing slips out an when im fully awake im thinking who an what the hell is this. it just totally doesnt make sense. i fall asleep standing up in work an i just get shouted at all day, charlene wake up, charlene come on, charlene what wher you thinking. its all far too much! it gets me down so much. if something upsets me thats me for the day. anythin could set me off, ive spent nights crying thinking why me, im 19 i wanna normal life, i wanna move out and live in my own place but just the other day i realised this wont be happening, well not soon anyway. i fell asleep while i was smoking and ive always been ok doing this. i set my pants on fire because i fell asleep. this has shown me i cant be on my own. ive been on my own but not for long. imagine if i was cooking or somethin like that. ive been told i cant drive, so all u drivers dont worry! haha. i would love to have children, my boyfriend has one from his last girlfriend. i found out the tablets im takin would make me have a deformed baby well it wouldnt be healthy anyway! so if i wanted children i have to stop takin these pills an im bad enough now takin 400mgs of modafinil i'd just be a mess. my boyfriend is supportive an says we have loads of time which i suppose we do. somedays im ok somedays im sad somedays im in a real bad mood an i can be so hurtful. once i turned to my mum, she was askin how my day was an i said dont speak to me coz i cant be arsed talkin. i'll never forget that. sorry mum! goin back, laughing.... well my legs go my arms go my head goes my mouth goes an nothin comes out just air, i cant see for a few seconds it takes a while for my vision to go straight. i have to stop myself from laughing, i havnt been frightened yet but ive been told the same happens! i was walkin home from the cinems yeasterday with my sister (not that i saw much of it i was aslleep) an i saw the funniest dog, it had no hair an this big fuzzy head, bit like a shrunken lion i couldnt stop the laughter, my sister plonked me down on the grass verge so i could laugh. we wer ther for about 20 minutes. ther are so many questions but no answers at the moment im coping well but ive only known about it for a little while, people say it hasnt snuk in yet! we'll see hey! im still a learner with this illness but i know the medication im takin should help but it doesnt seem to be. its seems to be slowly getting worse, dunno how severe it can get. hopefully it'll slow down. thanks for letting me unload this on u lots of love an hugs charlene

I’ve been waiting for 4 years now to be diagnosed with something. A few weeks ago I had yet another trip to the emergency room after suffering a really bad fall while in our neighbor hood mall with my teenage daughter. This is the very same mall where it all started back in September of 2000, while there buying a birthday gift for a party my daughter was to attend that weekend she keep bugging me to buy something for her but as her Own birthday was just two weeks away the item in question was already wrapped and hiding in my closet. I kept saying no but she kept after me and while at the checkout she tried one last time it was just too much and I yelled at her “I said NO” I do not know exactly what happened after that all I remember is trying to grab on to the counter but I couldn’t make my arms work, I tried to speak but nothing would come out then my knees went out from under me and I was on the floor. It was over as quickly as it started. I thought I had a stroke and r! an the next morning to my DR. who started another major round of test.

We were already exploring everything possible to explain why I could not stay awake during work. I have lost count of how many specialist I’ve been sent to only to set there having one episode after another trying to get them to believe that this happens to me every day all day long and that the episodes are triggered by any kind of emotion from anger fear to laughter.

While taking this most recent $800.00 ride I was talking to the paramedic and he said something about seeing a lot of neurological problems and he said the words neurological neuropathy which I stored in my mind for later clarification.

I was wheeled into the ER with a ½ dollar sized gushing dent in my forehead and the first thing the “DR.” asked me was how much have you had to drink? That upset me to the point that I had an episode and when I couldn’t answer him, He pinched me to the point where I had a huge bruise, this is not the first time that I’ve been treated this way. The next day I remembered what the EMT had said and got on the computer and looked up Neurological neuropathy, which gave me no answers I did not already have but while looking I came across Narcolepsy, I’ve heard the word before but thought is was one of those made up words that DR’s use for what they cannot explain and like most people I talk to I thought I was something very minor and simple. After reading about cataplexy and the other symptoms of Narcolepsy I finally felt like I was not crazy and I’m not making this up I’m living with it every day and there are other people out there who know the same horrors that I do of being ! afraid of falling asleep because of the unwanted presence that climbs into bed next to me or the loud noise at the back door trying to get in while you are screaming but no one comes to help because they cannot hear you. I never told this to any of the DR’s in fear that they would lock me up. In four years the only positive help I have gotten was by mistake, when the neurologist couldn’t find anything on my cat scans or MRIs I was sent to the shrink to see if I had anxiety which I did not but was depressed at the continued lack of a diagnoses and cure, I was put on an antidepressant and after a few days my attacks were somewhat lessened and the feeling of being shocked under the scalp went away.

I took my new found knowledge to my regular DR. two weeks ago. She stopped in the hall next to me as I was standing there jammed up against the door shaking trying to keep from going all the way down. I was starting to come out of it until she opened her mouth and asked , “ ARE YOU HAVING ONE OF YOUR LITTLE THINGS?” after that it took her and the Nurse to pick me up off the floor. Things were really bad because I had been without the antidepressant for 2 weeks and was in bad shape to begin with and then I tried to tell her what I had found out but she was not real enthusiastic nor do I think she believed me I left copies of all the info with her. I just Pray that she read them so I can go for the test that Will determine if I am right and I don’t see how it could be anything but once reading the whole article about narcolepsy and cataplexy I went back and read my own medical time line which I had written three years ago and they were almost word for word.

What I do not understand is WHY? Why was I not diagnosed by my DR. when the symptoms are so straight forward and even all of the neurologist I’ve seen, the minute I said that my attacks are caused by anything emotional it should have triggered an answer

Especially when coupled with the fact that I was complaining about falling asleep all the time

To Your Success;
Madelyn E. Mole'
Home/Office; 713-991-2253
E-Mail hattrik47@yahoo.com

Hi,
I have been a Narcoleptic for 38 years. Unfortunately, I lived with the problem undiagnosed for 11 of those years. Although those first 11 years were hell, the discrimination from Insurance companies and as of lately our own federal government has made things worse than ever for the Narcoleptic. At the time of my diagnosis, Mayo Clinic considered me one of the most perfect examples of Narcolepsy they had seen. Dr. Robert Yoss used pupilometry as his choice of instruments to gauge the amount of medication necessary to correct my sleeping and cataplexy. His theory was to correct my sleeping and that in turn would correct the Cataplexy and other things associated with Narcolepsy. I started out at 120 milligrams of Ritalin and went up to 180 millig rams where I remain today. Today the University of Illinois-Chicago School of Nursing is doing research with pupilometry and I highly recommend visiting their web site, www.uic.edu/nursing /ihi. Better yet would be to make an appointment with one of their fine staff. My total story would be the size of a novel so this all I will talk about. Please, don't wait!!! University of Illinois-
chicago NOW!!!!!

hello, my name is Amara.
I live in australia, and i am about 4 months off of my 18th birthday. Just a few months ago i was diagnosed with Narcolepsy, yet i have been suffering from this disorder since i was at least 9 years old. I know my story probably isn't much different from most that you read or hear about, but i live in South Australia and have been going to the same hospital and seeing the same doctor for everything for the past 11 years, and have been searching for an answer for my tiredness and extreme weight gain. I have been going for tests every two months at probably the most well known hospital in the state and there has been only 1 single case of Narcolepsy in the past 20 years. The disorder is extremely rare over here, and the doctors arent really sure what road to take.
My mum and i have lived alone since i was born, but have always been surrounded by a big supporting loving family, but for the last 3 years, since i quit school (because i fell asleep in nearly every class, and ended up spending most of my time in the sick room) they just see me as lazy...and they think i dont WANT to achieve in life, as if i have NO goals. They picture me as a quiter, and even now just writting about it, rips me apart. I can remember when i was 10 yrs old, coming home from school, pulling down my blind and sleeping for three or four hrs, i thought that was bad, now i sleep for five or six. Most kids that age are out in the street playing, but not me, i was to tired to even go to a friends house. And even when i did i ended up sleeping half the time.I will never forget, i was about 13 and was at my friends house when i overheard my friends mother and the lady from my school canteen saying that i slept so much and was overweight because my mum was a single parent and she did'nt know how to look after me. When in actual fact my lifestyle and diet was healthier than nearly any one else i knew. My dad has always been 'around',though he never paid that much attention or gave that much effort. i see him once every 3 months and every time i see him he says things like "if you came and lived with ME for two weeks you'd be fine" or "your never going to get anywhere making up excuses all the time!". NOBODY in this whole wide world understands except those who suffer from Narcolepsy, that its not laziness at all, nor is it excuses or the lack of drive or want. If only they were aware of the effect that it has on every single second of the day,from the second you get up it feels as if you have been awake for 10 days straight. If we can all just STRIVE to achieve and even just make it up that first step then we are true fighters, (a person with narcolepsy's first step is just as good as a normal person's 10th step) Up until about 20 minutes ago i thought i and about a handfull of other people suffered from this unfortunate disorder, and until then, i felt alone, so to anyone else that feels this way,KNOW NOW THAT YOU ARE NOT
ALONE! dont give up!! dont give in!! thank-you for listening and i really wouldnt mind someone to keep intouch with so if there is any one that wants a friend to talk to about this then email me: amara_87_rox@hotmail.com. i would really enjoy talking to someone thats on the same page as me.
thankyou again
Amara from aussie

Hi, my name is Bethany and I'm 21 years old. Its really nice to read stories of other people who know what a burden Narcolepsy and Cataplexy are. All together it has basically ruined my life, and believe me, I know that sounds harsh but no matter how much I try to make things become better, and no matter how much I try to think that I'm not going to let this ruin my
life, I always come back to the same conclusion- it has ruined my life.

I was a straight A honor student, and a very independent person. I was involved in sports, music, and drama. I had the hopes of graduating and going on to college to get my bachelors degree and go to graduate school. I had and still have many things I want to expierience in my life. Mostly I wanted to get out of this small tourist town I have lived in all my life. I wanted to follow in my older brothers footsteps, as he is now at Yale with 2 years left till he gets his PHD.

At Christmas of 1997, at 13 years old is when it started, that I can remember. I became extremely depressed. I was in 8th grade at the time. For the next 2-3 months the depression symptons worsened. I started sleeping as soon as I got home from school. My teachers started calling my mother, expressing there concerns, not only about the falling asleep but the
effect it had taken on my grades. Not to metion I did have 3-5 second long inclinations of Cataplexy while falling asleeop at school. Everyone at school started talking about me and laughing but there was nothing I could do. Not to mention that my very good relationship with my mother started diminishing. After 3 months my life was so horrible I considered
suicide many times. My mother finally brought me to my doctor, I had a cat scan and a couple EEG's. with no conclusion and things worsening he referred us to a neurologist at a very prestigious hospital. At this point me and my mother hated each other, I don't know how she put up with me. I would scream and cry and call her names and be sarcastic, and I also was in deep denial of what was going on. The neurologist concluded that the spells(our name
for cataplectic attacks) was my way of trying to get attention and that it was all just emotional problems and to get counseling. i said HAHA in my mothers face, told her I was right and she was wrong. Months went by and the spells got worse and would last up to 45 minutes. The hallucinations were extremely bad. I had gained a lot of weight, casue all I did was sleep. My mom fianally couldn't take it anymore and took it upon herself to find a
neurologist at childrens hospital, over an hour away. This doctor referred us to a sleep neurologist who is my doctor to this day. I was finally diagnosed in august of 1998, with Narcolepsy and severe cataplexy and after more eeg's and sleep studys and an MRI I finally started medication on ritalin about the same time I started 9th grade. That summer I had become a very rebellious child. I hated everyone especially my mom. I would have temper tantrums. I can't even imagine how my mother didn't disown me.

In 9th grade I started in all low classes as my grades had diminished down to D's and F's. I lost all my friends even my best friend of 5 years. I started hanging out with the wrong crowd. I started smoking and doing drugs, mostly pot. I had changed into a completely different person in a matter of 10 months. I still thought about suicide and was still depressed. I also had to deal with having spells in school and the way the poeple around me
reacted to it. after I while I got used to the kids I had classes with and it became kind of a joke, which for the most part relieved me. they got used to it and knew what was going on and they still accepted me as a friend, laughing about didn't hurt me because I can imagine how silly I must look, and its better than people getting scared and freeking out and calling an ambulance. I got used to them and used to having spells everyday. My new best friend I had all my classes with and she kinda watched over me.

As all this was happening I got switched from ritalin to provigil and I was on Vivactil and clomimpramine, which I am still on now. to sum up the rest of my story, I went through highschool dealing with this. Teachers were informed of my condition and some understood and were helpful while others didn't understand and reprimanded me. My grades still were D's and F's and they weren't getting better. I tried the best I could and each year me and my mom kept thinking,"oh now things are a lot better and I'm starting a new year I'll get good grades and everything will go back to before". But it didn't I barely graduated by .25 credits. I just couldn't concentrate and I wasn't attentive. If the teacher started in on a lecture or giving notes, I would go into sort of a trance and my notes would turn out as
scribbles. I tired getting help, in fact I tried everything, and I just couldn't do it.
If something didn't interest me I wouldn't be able to be attentive to it.

Throughout my highschool years my mom had called the police on me numerous times, claiming I was out of control. I had a very hard time controlling my anger, and controlling all my emotions, which just made the cataplexy worse. The police never did anything except threaten to arrest me if I didn't behave. My Mom wasn't satisfied so she made me go to the courthouse
with her and she put me on a CHINS when I was 16. It means to basically put your child on probation because there bad. I had a probation officer who I had to meet with in school once a week. If I didn't follow the terms I would eventually be put in foster care, which i really didn't want.

More time went by and I started having boyfriends, loser boyfriends that my mom hated. They were always a lot older then me and they all had been in trouble at one time or another. I went through 2 different counselors which did nothing. In 2000, I was 17 and in September I moved out and in with these kids I had known for all of a month. I lived there till we got
kicked out, after that I stayed with friends or in my car but I absoloutly refused to go home. i was still going to school everyday, how I managed that I don't know. I was into different drugs, and still smoking, trying to take care of my best friend at the time who was addicted to coke and was screwing up her life, little did I know I was doing the same to mine. Christmas week that year I had just renewed all me prescriptions and they were on in my purse along with my other important things. well, my purse got stolen and my ins. doesn't cover stolen meds. there was nothing I could do so I went without meds for 2 and a 1/2 weeks. I thought I was gonna die. One day that week my car got a flat tire. I didn't have a place to stay and I had no money, cause I lost my job. I walked a mile in the pouring rain and called my mom collect at close to midnight. She came and got me and I went home. At school around that time one of the psychologists called my mom because I guess I said I rather be dead. I went for a psychiatric evaluation that morning but
refused to stay at my moms that night. To sum up the rest, I started seeing a psychopharmacologist and was diagnosed with Bipolar manic depression on top of the other stuff. I started meds for that and started re-doing my life. For about 6 months I did nothing but go to school go to work and sleep. In school I had drifted apart from everyone, I pretty much went to do work and thats it, I spent most of the time by myself. I'm sorry this is turning into a really long story but there is a lot more, but I'll skip all that and just tell you that now i am on disability and I have my own apartment because me and my
mother can not live together. we get along so good now that we don't. I work part time but I'm trying to get a good job or some kind of schooling where I'll make enough for my bills and my apartment without disability. I hate being on it. People think its all great but its not.You can only make so much money if your on disability and if you add that to the amount of your disability, there basically telling you that you have to live of of that much money. Its not enough, but if I get another job, they'll cancel my disability cause I'm making to much. This is why everyday, I think of how it would be if I hadn't gotten sick. I'd be off in college right now. Everyone says, don't dwell on that, but they don't realize that I have to go through everyday, hearing how people go to college and have good lives and make a lot of money and have all these plans for there future. I've looked up classes for college but for every class it says, 3 hour lecture, 2 hour lecture and right there, I can't do that. I look at pics of before I got sick and I'm so skinny. now its very hard for me to lose weght and its nowhere near how much I weighed then.

I'm really glad that so many people have learned to deal with this problem and have gotten back to there lives. Unfortunately, I go everyday wishing I was someone else, wondering why this had to happen to me, and what did I possibly did to deserve this. Anyways, thanks for letting me share some of my story, you can make it shorter and cut parts out if you want, I know I wrote a lot. My email is <SXtemptressXS@hotmail.com) Thanks,

Sincerely, Beth

My name is Jennifer, I am 27 and I was diagnosed with narcolepsy about a month ago. It is kind of a relief because my regular doctor thought I had MS. As much as narcolepsy sucks, I am glad it is not MS. I am also glad that they finally figured out what is wrong with me. I had been to several doctors and my main complaint was always being tired. So tired to the point where it was affecting my daily life. I was too tired to play with my daughter or clean my house. The doctors always said it was chronic fatigue or my thyroid or a vitamin deficientcy. However all my blood work kept coming back normal. My family and friends thought I was lazy so did my teachers in school and my co-workers. Since being diagnosed with narcolepsy, I find that people are fascinated by that fact. They ask me if I am like the chick in "Deuce Bigalow" or do I fall out of chairs or something (which I have been known to do.) The most popular is "do you still drive?" Yes I do. I don't know if I have ever fallen asleep driving or not, but I am definatley guilty of leaving work and not knowing which way I drove home. I am also giulty of leaving thinking that I am going to the mall and the next thing I know I am going towards work. I dont know if that is becuase I have fallen asleep or that I am just a creature of habit. I konw I have fallen asleep in class before. I did not know until I started reading stuff on narcolepsy that you could be asleep and still functioning like you are awake. Eyes open and still moving even. Crazy. I had to fight with my insurance to get them to pay for my Provigil but I finally got it about a week ago. So far I can tell a little bit of a difference. I am not tired all the time that is for sure. I am not hyper like taking speed either. I am just awake. I dont see a difference in energy though which I wish I did. I am still wore out, just not sleepy. Does that make sense. If anyone has any ideas, let me know at jennifercannon@adlephia.net

I am 57 years of age and have had narcolepsy since age 20, but of course it was never diagnosed back then. I have all symptoms and I am very dubious about the statement that narcolepsy is rare; over the years I have seen numerous people suffering from my symptoms even although we had no name for them. I also believe that my grandfather had narcolepsy, based on his day-time sleep habits and my recollections of his driving in a trance. He was the driver in a pedestrian accident that resulted in death long before I was born. His father, in turn, had died in a car accident; he drove through a construction barricade and off an open bridge - it was daytime with full visibility of the barricade and witnesses said he made no effort to stop the car. I have been involved in several accidents myself, all the result of sleep attacks. I have seen one car accident where I am certain that the driver was a narcoleptic and I have encountered an employee asleep on the floor who, when I talked to her afterwards, described the symptoms of narcolepsy. Only after a serious car accident in 1977 did I finally go to a doctor, who referred me to a psychologist, who could only describe my sleep attacks as an acquired physiological response to stress. I was diagnosed as narcoleptic in a sleep clinic in 2001.

Fear of driving prohibition is not the only reason narcoleptics may not seek help. When the attacks of cataplexy hit me in my last year of university, and in the same week I began falling asleep, it was my conclusion that I had suffered a nervous breakdown. My father had suffered a nervous breakdown when I turned fifteen and I had seen how drugs and shock therapy had destroyed him. (In hindsight I wonder whether my father also had narcolepsy; he first turned to a psychiatrist for help when he was about 20, and he was fortunate to work with his father in a business that allowed him to chose his hours and to retreat to his office at will.) I would never have agreed to a drug regime to control my symptoms, thus I said nothing to anyone. I won’t take time to describe all of the experiences I have had. On the basis of my abilities I became an executive in government but I was teased about falling asleep and on a few occasions my sleep was a serious embarrassment to my department. It ultimately contributed significantly to my decision to take early retirement. Ironically I never would have worked with government had it not been for the narcolepsy; it had forced me to give up intentions for law school or post grad work. Narcolepsy has had equally devastating impacts on my social life.

My symptoms: daytime sleepiness – now usually manageable by advance napping and the use of modafinil, otherwise I have at least four episodes of involuntary short “sleep” per day; cataplexy – usually associated with laughter but in my “early days” my legs might buckle when I gave speeches, and sex could also lead to total uncontrolled muscular spasms; muscular paralysis with eyes still open when I lie down to sleep (but only if I lie on my back; I have come to believe this is really the result of entering the REM mode in my brain before my body/brain has had a chance to fall asleep); finally hallucinations, but only when I am in bed; frequently I believe there is someone else in the room.

Sam

hi melodie. i was so glad to find your site. on february of 2003 i started falling over and went to my family doctor where he had no idea what was wrong with me. i then was sent to a neurologist and he felt that i had cataplexy. i have also been diagnosed with normal pressure hydrocephalus, sleep apnea, restless leg movement and i have excessive daytime sleepiness but i have never dropped off , so they dont believe i have narcolepsy....in december of 2003 i started to have strokelike symptoms and twice was rushed to the hospital in an ambulance.....but to no avail have they determined what these spells are....i am aware of everything around me, can not move or talk. these have lasted from 5 minutes to about 4 and a half hours.....the only way i come out of these spells is by putting ice on my neck, forehead. the longer i am in them the longer it takes for my speech and mobility to return. i have had approximately 50 of these types of what i refer to as an episode....do you know if this is a form of cataplexy....my sleep doctor has said that cataplexy only lasts about 2 minutes...but yet i have read stories and it seems that there are discrepancies about that.....my whole life has changed, if i dont get my rest douring the day i will have one of the spells which always start with the fluttering of the one eyelid.....i guess the thing about having had so many spells is that i dont think i am going to die like i did when i had the first one....my regular catpalexy is somewhat controlled with the medication. i very seldom fall to the floor but i do have the head dropping and they are usually brought on by laughter, although some loud noises or sudden actions from others seem to trigger as well....i feel so alone with this strange illness and would love to hear from someone else in similar circumstances....thankyou , cindy from catcow@shaw.ca

I am in my mid "40"s. I have narcolepsy without cataplexy.

I can remember being in college and falling asleep while driving in bright sunlight. Since that time I always had problems with that. About 5 to 6 years ago I had more difficulty driving to and from work, catching myself falling asleep or fighting the urge to go to sleep. My wife would wake me up because I would be acting out my dreams. At that time I thought my sleep problems were due to my allergies (sinus infections about every six weeks).

I told my regular internist my wife and I had enough of the sleep issues and allergies. My first sleep study concluded that I had sleep apnea. You would to if your allergies were flaring up and you had post-nasal drip galore and woke up in the middle of night gagging on the stuff. My MLST at that point showed a sleep latency of less than 8 minutes but
no dreaming.

A second sleep study 8 months later (after the allergies were somewhat conquered) revealed that I had limb movement disorder. I was put on clonazepam. For about two and half years I did reasonably OK.

Then the bottom fell out. I was back to falling asleep driving to and from work, falling asleep at stoplights, falling asleep driving with my wife talking to me. Work was something else. Falling asleep at the computer, reading, doing experiments, and grading exams. I started to keep a "sleep log" when I fell asleep proctoring an exam (! How embarrassing!). Back I went to my internist for help.

Diabetes was ruled out. Thyroid problems ruled out. Back to the sleep lab.The sleep doc was insistent that I had sleep apnea (I disagreed). I flunked the CPAP. The sleep study showed fragmented night sleep with periodic limb movement. He still thought I sleep apnea. When I got a copy of the sleep study it was clear I did not - Time for a second opinion.

The next sleep doc thought that I might be depressed. The psychologist said no. Then she ordered a narcolepsy blood test ( I assume the one for the DR2 HLA). I flunked. She concluded that I had idiopathic hypersomnia and gave me Provigil. It works for the most part. The next appointment later she quizzed me about how did after taking mid-day naps (very refreshing) and a thorough review of my sleep study - she concluded that I have narcolepsy without cataplexy.

My advice:
1. Find a good sleep doctor - one who is not quick to diagnose sleep apnea and order a CPAP.
2. Find the time to take short daytime naps. They really do help.
3. Provigil works for the most part. I am on 200 daily. I split my mine. one half at breakfast - so I can make it to work. Then the other half after lunch and hopefully a nap to get me through the afternoon and home safely.
4. You may need something to help you sleep at night. I need the clonezapam to help with movement problems and acting out dreams. Ask your sleep doc to take a careful look at your night-time study.
5. Lastly. This may seem cruel and paradoxical. Try to get in the best physical shape you can and maintain it. It does help with the tiredness and sleepiness.

Robert M. Riggs, Ph.D.
Associate Professor of Medicinal Chemistry
McWhorter School of Pharmacy
Samford University

Hello- I came across your website in efforts to get some relief on how I am feeling. I was diagnosed with N about seven years ago, but have had symptoms all of my life. Researchers say that we typically see symptoms in/near our twenties. I remember as a child promising my mother that I would help her clear the dinner table after a quick nap. I would line up the dinner chairs & lay on them for a quick siesta, which generally lasted about 5-7 minutes. Once I woke, I would have to wait a few minutes to clear the hallucinations and regain power over my body. I would be awake,but it always felt like an outer body experience or that there were two of me! I still struggle with this & it never ceases to amaze me how weird all of this is! Getting through college was very difficult. I could hear others around me talking about me falling asleep & there wasn't anything I could do to "snap out of it"! I couldn't even get up & walk out when the class was over- I had to wait for the rest of me to wake up. I even have "automatic behavior" and unfortunately, it involves food. Many times as soon as I wake up from a nap, I find myself eating junk food. Afterwards, I ask myself, "why in the hell did I just eat that?" I never feel awake when I am doing it- it is like I am sleepwalking but I know I am awake. I guess I am grateful that I don't binge on alcohol!

I am 34, married and have four children. Every day is a struggle, especially with my commute to work which is 50 minutes. Many times, I pull over at a hotel or restaurant parking lot along the way for a 9-10 minute nap. After that, I have to sit & finish my dreams (I get the hallucinations before falling asleep, too), regain muscle control & then continue with my journey home. Most evenings, I find myself almost crawling into my house. Now that my oldest is 10, I can count on her to keep her siblings safe so I can doze off for 10 minutes. Ten minutes works wonders on me but it is next to impossible to get those 10 minutes. It is very sad to know that I can barely read out loud to my children. I can handle a basic toddler book, but that is it. Talking & reading out loud wipe me out. I feel like my brain is heavy, grey mush. It is hard to explain. Showing emotion also takes a lot out of me(not that caffeine affects me, just a reference). My knees buckle & I know when it is time to sit down. I know that I need to fall asleep immediately- I do whatever I can to give into this disease & sleep off the attack before I harm myself or anyone else. The past few weeks have been the hardest yet. I know I fell asleep 20 times on my way home from work one evening & I am scared to death of not making it home next time without harming someone.

I know I have mentioned hallucinations, but they deserve more explanation because the whole experience is so bazaar. I know I started having hallucinations at a very young age. My nightmares would repeat themselves in broad daylight. I remember being about 10 or so & celebrating my brothers birthday with extended family. I was sitting on the sofa with my grandpa having my regular nightmare. Sadly enough, I was used to having them, so I had to wait for them to pass. I never thought I was crazy, but I was always spooked by the same images. Now, I mostly get them anytime I am about to go to sleep (whether it is during my commute to work, doing laundry, watching tv, etc) and when I wake up from sleeping. Suffering from Sleep Apnea doesn't help either!

I was diagnosed with severe N and currently take Prozac (40 mg), Provigil (200 mg 1-2 times) & Ritalin ER (1-2 times a day). I still feel like it is not enough. I don't know what else to do. I nap whenever I can but I feel like my EDS takes over too much of my life. I don't feel 34- I feel much older. My kids are young & I am a young mom. I don't want to regret this part of my life. I want to feel my age & celebrate life with my children. Any advice from any readers would be greatly appreciated.

kking97@neo.rr.om

Tired mom of 4.

hi im Daniela, im 12 years old. ive had narcolepsy for a year now. luckily i got it diagnosed a few months after the symptoms started. the really bad thing though is the fact that i have all symptoms of narcolepsy except sleep paralysis. and all of the symptoms arent jus happening a little they happen all the time. im seeing a doctor every month just to tell her how things are because shes never experienced a narcoleptic child.
i was living over seas in Thailand when it started. the first thing that happened to me was the cataplexy. id slowy start to feel my legs occasionly feel weak and shaky, my face would also shake hard out when i was laughing. from that day on i havent been able to laugh like a normal kid. 2 weeks after that i started falling asleep in class. kids just laughed and teachers told me off, i was lucky to have a good friend that cared for me. i went through so many tests to find out what was wrong for me, i was so scared because i heard the doctor once say that it could be a tumour or a disease and hearing those words made it feel like it was the end of the world. it was diagnosed in december, we left back to New Zealand at christmas.
all the symptoms started becoming severe. my cataplexy came to a point when id just collapse to the floor or look like i was in pain when i was laughing. then i started waking up 4 to 10 times a night. i havent had a good nights sleep for a year now and i know i never will. then i started taking ritalin for my sleepiness and clompimarine for the cataplexy. just last night i felt like my head was paralysed, i could say anythig or move it. i wasnt sure if it was sleep paralysis because my body was fine.
narcolepsy is a nightmare for me, slowly im gettin over the negative points and looking on the bright side. its true though that narcolepsy ruiens your social life and reputation, imagine going through your teens with it. im lucky ive got an understanding class. at the start i thought id never be able to learn how to drive or get a part time job as a waitress when im older, but i know i can still achieve those goals if i forget about eveything. its affected all my hobbies too like playing the piano, and playing sports
my narcolepsy is still bad and my doctor is trying to find a better medication with advice from her colleuges in australia. i know ive written a lot, but i thought that maybe some people would want to hear narcolepsy from a childs view. i found this site while researching for my speech on narcolepsy. if you want to say anything to me you can send me an email at: soccer_luver4@hotmail.com

I have been trying to get my mother’s experience out there because we both think it may help others.

My mother is 82 and was diagnosed with narcolepsy about 50 or so years ago, after a long period of not knowing what was wrong. She has also had cataplexy reactions when she tries to tell a funny story or is proud of herself or children, as is common with narcolepsy.

She was prescribed stimulants to keep her awake during the day and has taken them as prescribed up until recently.

She had an accidental breakthrough of sorts about 3 or so years ago. She asked for, and started to take a prescribed sleeping pill to sleep at night, and found that she does not need nearly as much stimulant. For the first time in her life, she can sit through and watch a whole movie without nodding off. She has driven as a passenger in my car almost 2 hours before she nodded off briefly. Her cataplexy has also reduced substantially.

We think all these years the doctors were trying to keep her awake during the day and this perhaps only made her sleeping worse. Now we realize that if she had been having deeper, more productive sleep with less dreaming, she would have been able to live much more awake and be able to do more during the day, as well as significantly reduce her need for the stimulant side of the drugs she is taking.

If anyone is interested, I would be pleased to get the exact names of the drugs she was taking before, the name of the sleeping pill that she is now using, and the amount of reduction she has been able to make on her daily stimulant drugs.

Hello, my name is Lantana.I am 25 yrs old, married and have 2 young children.I work full-time and go to school part-time. I have had migraines for more than 7 years and about 2 years ago, I was determined to be narcoleptic. My body always hurts and the migraines are fairly constant, but some days are more severe than others. After I was diagnosed with Narcolepsy I tried a few drugs including the Xyrem. The Xyrem had terrible side effects. As it is the “date rape” drug, when I would fall asleep, I would basically crash and stay there until the next dose or until morning. I would lock my jaw at night and when I would awaken, I would feel like I had slept with all my muscles flexed. Sore didn’t cover it. I was miserable and still am. I hate sleeping so much because I am missing out on spending time with my family and other activities that I no longer do. I do not have cataplexy or hallucinations, but it is still a very debilitating problem. I am afraid that I am never going to finish school (I had to drop my classes last semester because I was getting to tired to drive home at night). I am also fearful of losing my job because I am so tired that I call in more than I should. But I am so tired. I want to find a job working from home that allows me to make a decent income but allows me to get the sleep I desire. I am currently working 12-hr shifts at a hospital on MWF and go to school at night (just across the street so I am not to tired to drive) on T TH nights. But I don’t know how much longer I can work and go to school. I want to look into applying for disability due to Narcolepsy. I have found some people online who have done it, but can’t find a way to contact them. If anyone has applied for disability or is on it, please email me and let me know how you did it. It would be more appreciated than you know, or may be you do because you know what it is like. If anyone works a job from home that is working well with Narcolepsy I would appreciate it as well. I don’t want to mooch from the system, but it would be great to be able to finish and I don’t think I can do this and work at the same time. Once on disability for a certain period of time, you can eventually return to work. I do not know how much you can work, but my dad is doing it due to congestive heart failure. Good luck to all who suffer and I hope you find what works for you. Very grateful to find others like me, Lantana.

Hello my name is John, I have narcolepsy with cataplexy. I was diagnosed with this disorder in 1995. I lost two good paying jobs and tried to go on disability. It took 6 years to finally be approved and we went all the way to Federal Court. When I was approved I decided to go to college. I received my Bachelors and Masters degrees in Social Work. Many times when I told my profs that I had Narcolepsy they asked me to explain how this affected me in class. I usually told them that if I fall asleep in class it was not because they were boring but because I could not control it. One prof laughed and stated well at least you have an excuse. I am now a Licensed Master Social Worker working at a Center for Independent Living as a advocacy specialist. My manager was interviewing a lady the other day and the person mentioned that she had Narcolepsy. The manager stated that she had an employee who has Narcolepsy. When the consumer heard that she colapsed with a cataplexy attack. We had a very good visit because it was the first time either of us had met another person with this problem. I am now assisting her in finding resources since she was fired from her job. I just wanted to share this experience with someone.

Hey y'all, my name is Belkis and I'm a 21-year-old college student from Texas living in Miami. I've always been a very sleepy person all my life but it was always just a part of me so I never really saw it as a disability until recently. I've always fallen asleep in class, while riding in cars, while watching movies or tv, while studying, and within the past few years, while driving. I finally decided to go to a specialist b/c of the danger of getting in a wreck and b/c I'm just fed up with it all...always being so tired during the day even though I've slept plenty of hours at night, falling asleep in class and upsetting my professors b/c of it, dozing off at work and while studying and taking naps all the time when I should be doing more resourceful things.

I'm a very active person, I play soccer and rugby(played soccer for FIU for half a season but decided to call the quits, slowly started getting more tired and less energetic, coaches and teammates mad about my tardiness)!! and I try to keep myself busy by trying all kinds of new things which really helps my laziness and keeps me from depression. But I've been so depressed lately b/c I know I'm on the verge of failing my classes and my professors hate me, I've tried to throw the narcolepsy thing at some of them but they don't seem very sympathetic....and it's all b/c I can't ever get anywhere on time(I live about 45 minutes from school and work on top of it all) or turn in anything on time and I've become a total failure of a person. It's not so bad when I've got fewer classes and less work, but this semester I've got 4 classes(one I had to drop) and I'm working 2 jobs. I just want to jump off a cliff and escape my misery. I really enjoyed reading all the entries on this site though b/c now I don't feel so alone...and I see that other people have some similar symptoms too...vivid dreams from only minutes or seconds of sleep, talking to people when waking up but not remembering anything later( I even got up, walked around and had an argument w/ my ex one time and didn't remember) slight weakening of my knees and joints when I laugh sometimes and my face feels lazy, and being paralyzed while stuck in nightmares that I'm struggling to get out of.....the list goes on and on, and my doctor gave me some Provigil to try. It definitely helps me stay awake and not fall asleep on the road, but it gives me major headaches, makes me forget to eat cause I'm just goin goin goin, makes me extremely hyper and figidy at certain times during the day and really depressed at others....at least I've been more awake though. If only I had found this out earlier...that's really what bugs me the most....thinking about all the times I could have been so much more productive. Thanks for listening y'all. God Bless

I am jennifer a 27 year old female from chicago who has has Narcolepsy almost my whole life looking back i was having symtoms at age 5 and diagnosed at 14. It was mistaken as depression and a behavior disorder. I now have had 2 children and still struggle daily even with taking provigil. I work full time and find myself struggleing to stay awake all day then come home and take a hour nap. I cannot keep my house clean because i am too tired when i get off work. I filed for disabilty about 3 years ago and was deneyed the reason was that i should be able to work a minnum wage job. This is such a joke to me people walk around and play crazy and get SSI .But i seriously need it and cannot get it .On top of that because my kids are covered under there dads insurance i can not be covered through public aide .I cannot keep a job long enough to get insurance or even be able to afford it .When i am pregnant i do not take medicine and i feel fine no sleepyness.

Hi, I am so glad to see your website. I feel so alone with this disorder. No one I know has had any experience with it so they can't understand what I am going through. My first cataplexy spell was 2 months before I was diagnosed. Up until then I just felt tired and sleepy all of the time. That first attack had to be one of the scariest times in my life. I was almost completely paralyzed. My husband would talk to me and I couldn't even talk to respond to him. He thought that I was having a stroke and so did I. This lasted off and on for 2 days. We went to the hospital and of course they couldn't find anything. I went to see my regular physician and he ran all kinds of test. After all the tests came back normal he mentioned that I may have narcolepsy. I was in shock. That had never even entered my mind. After I left his office I went online and did some research on narcolepsy. I sat there reading the symptoms and it was like it was describing me. I was sent to a neurologist and then to a sleep center where I underwent sleep studies and was then officially diagnosed. Since then my condition has continued to get worse. Provigil worked for a while but not real well. Then I was put on Adderall XR and also Prozac. I have not seen much improvement from these either. I have mild to severe cataplexy events pretty much on a daily basis. Sometimes I cannot walk without help. I go through my days feeling like I am walking around half asleep. I never really feel completely aware of what is going on. My memory has suffered as well. I cannot do any kind of physical activity without getting so tired and weak I feel like I am going to collapse. I have had to leave my job that I have been with for 8 years. I could not function at my job anymore. I have had to quit driving because I feel so out of it all the time. I feel as though my life has been taken away from me. I feel so helpless most of the time. I never have a day where I feel normal anymore. I have applied for disability but from what I have been told it could be as much as a year before I get approved, that is if I get approved at all. We are struggling to get by on my husband's salary and it is not going well. I am so scared that my son will have to do without things he needs or wants. I grew up very poor and I never wanted my children to have to grow up that way. My doctors are exploring Xyrem as a possible treatment for me. I am scared of it. The possible side effects are very disturbing. Could anyone who has taken it please let me know their experiences. According to my docs this is my last hope and any feedback from anyone would help me so much. Amy