21 replies to this topic

[sweetsurrender]

I had mentioned my EDS to doctors before and had blood tests done, but it was never the primary issue of my office visits. I went to the ER after a rather dramatic cataplexy episode, and after seeing my PCP was refereed to a neurologist to get checked for epilepsy, as my mother was diagnosed when she was the same age as I am now. She happened to make the connection after I explained to her what happened. When she brought up narcolepsy it seemed very out of the blue, but I was willing to go along with the tests because of the EDS that no one has been able to explain before.

I am wondering how many other people were somewhat surprised by narcolepsy as a diagnosis or went in for something completely unrelated?

[sleepywriter]

I had mentioned my EDS to doctors before and had blood tests done, but it was never the primary issue of my office visits. I went to the ER after a rather dramatic cataplexy episode, and after seeing my PCP was refereed to a neurologist to get checked for epilepsy, as my mother was diagnosed when she was the same age as I am now. She happened to make the connection after I explained to her what happened. When she brought up narcolepsy it seemed very out of the blue, but I was willing to go along with the tests because of the EDS that no one has been able to explain before.

I am wondering how many other people were somewhat surprised by narcolepsy as a diagnosis or went in for something completely unrelated?

I knew I was tired. I've always enjoyed sleeping. Over the years, especially after having my daughter, the EDS has worsened. I had a myriad of excuses why I was so tired. First, it was work. Then, it was the baby. Then, it was my husband's snoring. Then, it was acid reflux. When I went in to be examined for acid reflux, my husband also asked me to mention my sleepiness to the doctor. She said that it could be a result of the acid reflux waking me up. So once that was under control and I was STILL tired and unable to find another excuse, the EDS became the primary focus. The first time I went to the sleep doctor and he mentioned narcolepsy, I thought he was totally off his rocker. I am guilty of not knowing the facts prior to seeing the doctor. I wasn't like the guy in Rat Race, so I thought it was definitely unlikely. The next day, however, I came across www.cataplexic.com. When I read the letter on the home page, I cried. I knew in my heart at that moment that my doctor was on to something....

[jujufish]

after years of failing in school the guidance office at my middle school noticed that some thing was wrong with me. i took a test to see if i was ADD and would qualify for special assistance. it was then mentioned to my doctor that i was diagnosed with ADD and some how i ended up being referred to the local hospitals pediatric sleep specialist. the only thing that tipped them off was my mention of what i would later find out was cataplexy. I really wasnt sure i had narcolepsy because its not very bad for me so my diagnosis was a complete shock.

[Lorz]

I always thought it was normal to sleep and nap a lot. I was raised by my dad, an undiagnosed narcoleptic. It wasn't until age 26 when my boyfriend was concerned about my snoring and wanted me to be checked for apnea that I went to a sleep specialist. He asked me how tired I was and got me started thinking about my other symptoms and before then I hadn't realized they even were symptoms. I had my own explanation for sleep paralysis and hallucinations...I was simply stuck between being asleep and awake. Cataplexy was either hypoglycemia or near syncope. It still took a year of knowing without really knowing before I was finally diagnosed.

[Kayra]

The reason I checked is because my dad told me I had hypoglycemia my entire life (this was TOTALLY false) I went to get blood tests done and the doc said it was weird that I would sleep a lot so she got me to do a sleep study, Then I was misdiagnosed with apnea even though ALL THE SYMPTOMS WERE THERE except cataplexy. I had two more sleep studies done assessing I don't have apnea at all, just slight breathing constraints from an overbite. It took a while to get it all figured out however my friends always made jokes that I had narcolepsy when I was growing up at like sleepovers and stuff.

[sleepywriter]

The reason I checked is because my dad told me I had hypoglycemia my entire life (this was TOTALLY false) I went to get blood tests done and the doc said it was weird that I would sleep a lot so she got me to do a sleep study, Then I was misdiagnosed with apnea even though ALL THE SYMPTOMS WERE THERE except cataplexy. I had two more sleep studies done assessing I don't have apnea at all, just slight breathing constraints from an overbite. It took a while to get it all figured out however my friends always made jokes that I had narcolepsy when I was growing up at like sleepovers and stuff.

I was usually first to fall asleep at sleepovers. It resulted in being the one who got inappropriate shapes drawn on her forehead or shaving cream all over the face or whatever.

[corey91386]

I was referred to the doctor by my psychiatrist. I was always a very active healthy male up unti the past year. I woke up from a nap and have not been the same since. I was treated for anxiety/depression and still on medication for that. I continuously went to my psychiatrist complaining of EDS and she sent me for a sleep study because the medicine should not be causing EDS. After the sleep study I was diagnosed with moderate to severe N w/o cataplexy. It is a very interesting way of life right now as I have the urge to sleep all day but can't. When I lay down for a nap I am wide awake but if i keep trucking throught the day I am miserable. It is a constant battle with myself. I am currently seeing doctors at the Cleveland Clinic about my condition and considering gettin on some medication. To this point I am only on Pristiq which is an SNRI and nothing else. I tried Nuvigil and I thought my head was going to explode.

[Megss]

I was recently diagnosed with N, and like some of the other posters I looked at the Dr with a blank stare... thought it was my fault I slept so bad, and was so tried all day everyday. Always blamed myself, and that actually makes me very angry and upset. I think my EDS started around 16 or 17. Have always complained to doctors about being overly tired... i was told i was anemic, or that i needed exercise, or to eat better (I do exercise and eat pretty darn well)... not a single person suggested that it may not be my fault. I am now 28, and started having a really hard time sleeping at night... and was sent to a sleep clinic... guess falling asleep in less then a minute and dreaming right away isnt normal. Even now my friends and family don't believe me...

[Megss]

I was referred to the doctor by my psychiatrist. I was always a very active healthy male up unti the past year. I woke up from a nap and have not been the same since. I was treated for anxiety/depression and still on medication for that. I continuously went to my psychiatrist complaining of EDS and she sent me for a sleep study because the medicine should not be causing EDS. After the sleep study I was diagnosed with moderate to severe N w/o cataplexy. It is a very interesting way of life right now as I have the urge to sleep all day but can't. When I lay down for a nap I am wide awake but if i keep trucking throught the day I am miserable. It is a constant battle with myself. I am currently seeing doctors at the Cleveland Clinic about my condition and considering gettin on some medication. To this point I am only on Pristiq which is an SNRI and nothing else. I tried Nuvigil and I thought my head was going to explode.

I tried Nuvigil last week, worst feeling ever! Had a panic attack and then felt like half my brain was missing for the rest of the day... I just started on Adderal, I am still super sleep and a little foggy but I am hoping for the right combination soon! Good luck!

[Niemie]

I'd had EDS all my life, but I was homeschooled through high school, napped a lot in college, and lived in a big city with great public transportation systems for most of my young adult life. So the sleep attacks were never a safety issue (although my friends did make a running joke of it ). I moved to a new city with poor public transit last summer, and suddenly the sleepiness was a big issue while driving. It was also hard to meet new people when I couldn't stay awake past 8pm (or through a movie). So, I kept a sleep journal for a month and visited my PCP.

[Enginerd]

I'd been tired ever since I could remember, and was always very lethargic throughout high school and college, having to drag myself to classes, meetings, and activities. After my first semester at college, I returned home for winter break and slept for 25 hours, woke up for a few hours, then slept for another 17 hours. I immediately knew the fatigue was abnormal and made an attempt to elucidate its cause by visiting my local doctor to have bloodwork done, assuming I had mononucleosis. My bloodwork turned up nothing (although I later learned it did clearly show hypothyroidism--stupid doctor) and my doctor insisted it was just the rigors of freshman year causing my lethargy. So I put my thoughts of illness to bed (haha) and didn't re-investigate my fatigue until 2.5 years later. My best friend saw how tired I was all of the time and knew I felt awful, even after sleeping for 12 hours. I still figured nothing was wrong with me except for a heavy courseload, so my best friend took matters into his own hands and tricked me into visiting a doctor in the student health center for an appointment he had set up for me one day. The school doctor concluded that something was abnormal, and sent me to a sleep center for my first overnight sleep study and MSLT. It would be another 4 years, 3 overnight sleep studies, and 2 MSLTs before I would learn my dreaded diagnosis: narcolepsy.

In short, I didn't really go to the doctor who started the sleep-study-ball rolling for my fatigue out of free will. But I did keep the ball rolling!

[songbird]

To answer the OP's question, I knew narcolepsy was a possibility, but I never seriously considered it. It was running joke among my friends. "God, Eve, you're such a narco." My family just thought I was being lazy or irresponsible like young folks are prone to be. My high school band director thought my blood sugar was out of control. Then I'm being reprimanded at work for falling asleep and scared of losing my job. I put it off as long as I could, but I eventually went to the doctor. He put me on Adderall XR, and it helped a little. It was only 3 months worth of meds, but I managed to make it last about 4. When the new year came around and my insurance changed, the new coverage wouldn't authorize the meds without a sleep study. I don't know why I did it. Maybe I just didn't know what else to do. I figured the doctor would tell me I was just lazy or that I had sleep apnea because I'm fat. I considered narcolepsy, but I still only thought of it as a joke. I've been incorrectly diagnosed before (something unrelated) and it changed my life, and I didn't want to psych myself out, so I refused to research narcolepsy or apnea. Now my doctor tells me I "definitely" have narcolepsy and mild sleep apnea. So I'm trying to learn everything I can about both, and the more I learn about narcolepsy, the more it seems that it involves a lot more than just Eve-falling-asleep-in-her-salad. I'm still really wary, though, and not at all used to the idea and what it means for my future.

The Diagnosis forum seems like the place to do the meet-and-greet, so... hey guys. That's how I got to the doctor, how I got a diagnosis, and how I got here to you guys.

[Enginerd]

The Diagnosis forum seems like the place to do the meet-and-greet, so... hey guys. That's how I got to the doctor, how I got a diagnosis, and how I got here to you guys.

Hi, and welcome! I'm glad to hear you were finally diagnosed, giving an explanation for your symptoms that wasn't "laziness". Like you, I never thought narcolepsy was even a remote possibility. In my first sleep study, I had been diagnosed with mild to moderate sleep apnea, but that has since disappeared, fortunately, although my fatigue had continued to worsen to unexplainable levels. My sleep doctor first mentioned narcolepsy to me out-of-the-blue on the phone back in 2009 while relaying the results of my 3rd PSG and 2nd MSLT--which only indicated idiopathic hypersomnolence and frequent nighttime arousals--by saying, "I hesitate to call this narcolepsy....." I brushed off her comment immediately and thought, "Narcolepsy?!?! Where did she come up with THAT? Yeaaaaaah, right!"

But one more PSG and MSLT later, and here I am.

[songbird]

Hah, I more than half-thought it was laziness, too. Or that my diet was wrong. Or that I was stressed because there's always something to be stressed about. Everything that's NOT the EDS, I just attributed to my brain just being wired a little differently. Now I'm picking apart what is me being different and what is the N. Like the OP, I thought the sleepiness and the dreams and whatnot were normal, or at least not terribly odd.

Do a lot of people get (mis)diagnosed with apnea? I know everyone does it a little bit, but when your doctor hands you something like "mild apnea", do you kinda just want to roll your eyes?

[SleepyDroola]

Hi! I'm new here, just had my sleep study done last week and the doctor told me I present symptoms of Narcolepsy. All week I have felt a little sad because my whole life everyone has always made excuses for my excessive tiredness and I have always beat myself up over it. I went to the doctor as a teen, and he said I needed to eat more and drink more water because my tiredness was due to being dehydrated. Of course! That must be it...so I drank so much water that all I did was pee and get dizzy from flushing out electrolytes.

I finally decided to make an appointment to go talk to my doctor about how tired I am after my fiance said he couldn't deal with my sleep habits anymore. He has seen how my family brushes it off ("You think you are tired now? Wait till you have a baby!" "Go to bed earlier!" "Stop working out so late!" "Eat more!"), and through living with me for three years he sees how I can take tylenol PM and still not fall asleep, how I nap everyday or else I literally shut down, and how after I get extremely frustrated I sometimes plop on the floor because my body just...collapses. While everyone else around me was trying to convince me I was lazy and a drama queen, I knew internally that something wasnt right - and it felt good to meet someone that saw it for what it is - a real issue! I also noticed a big change in my work performance. Last year I was promoted at my job and now I sit at a desk all day. When I used to do my old job and was on the road a lot, I was tired, but too busy to feel as bad as I do now. This past year I have fallen asleep at my desk multiple times and when I take my lunch break, a lot of times I just sleep in my car in the parking lot. I've had full blood work panels done to see if I am missing any vitamins or have an autoimmune disease such as Lupus, but they all came back negative. Which fueled the "you are so dramatic!" fire even more for those around me. My fiance has begged me for years to get a sleep study, and I finally caved and went to see someone.

So now I was told that I have something real, and not just people accusing me of being lazy/dramatic, I feel more empowered to do something about it, but...there really is nothing. Not sure yet about the medications, I go back to the doctor early May to talk to him about what I could try, but in the meantime I'm just doing research and trying to figure out what I can do. I'm so tired (haha) of napping my evenings away and sucking on coffee all day in hopes that I feel a boost (I usually dont).

Well, thanks for reading! Typing this made me fight off the nap attack I felt coming on around 11:30. ugh!

[sleepywriter]

It sounds like you owe your fiance a thank you for pushing you to go get a sleep study. I'm sorry your family isn't being very understanding. Have you directed them to this website and shown them the brochures? I have some family members that STILL don't get it, and I have come to accept that they never will. Usually, I just shrug off their unfounded, unsolicited advice (like we need anymore!) and suggest to them that they come with me to the next appointment to hear from my doctor about what it's really like. Not one of them have come, other than my husband of course.

You ARE empowered to do something about it. You can live life the best you can. It's freaking hard, but it is possible. It takes a little while to get the right treatment plan, and it does change with time. The biggest thing you can do is to keep try and to continue to take care of yourself to the best of your ability. That means all the normal stuff - eating right, cutting down on sugar and caffeine, exercising, drinking plenty of water, and scheduling naps just right - but it also means reaching out for support when you need it.

Good luck and continue to post as you have questions/concerns/need to vent!

[sweetsurrender]

I'd had EDS all my life, but I was homeschooled through high school, napped a lot in college, and lived in a big city with great public transportation systems for most of my young adult life. So the sleep attacks were never a safety issue (although my friends did make a running joke of it ). I moved to a new city with poor public transit last summer, and suddenly the sleepiness was a big issue while driving. It was also hard to meet new people when I couldn't stay awake past 8pm (or through a movie). So, I kept a sleep journal for a month and visited my PCP.

I love going to the movies! Always have, but I always fall asleep at one point or another during. A lot of times it goes unnoticed until we are talking about the movie afterwards. I have a few friends that I go to see movies with, and I have told them before, "I am probably going to fall asleep, but I'm okay with that if you are." They just laugh and fill me in on what I missed afterwards.

[LauraL]

The last couple of years I'd been sleeping more than usual, having a hard time waking up in the morning, and so on. But I'd always been able to blame it on something else--allergies and asthma that were difficult to control, the medication I was taking for those conditions, etc. About October of last year, I found a new allergist who found exactly the right treatment for me, and got me off of almost all of the medication I was taking. I was breathing better than I had in years, but still exhausted all the time--falling asleep at work, taking 5 and 6 hour "naps"--so I began to suspect something else was going on. The Friday before Christmas (a work day for me), I slept through my alarm clocks and kept sleeping until 9pm--a total of about 22 hours. I made an appointment with my PCP the very next day his office was open. From there it took seeing three different specialists before someone could explain the results of my sleep study and figure out what was going on. I was so surprised to hear "narcolepsy or idiopathic hypersomnia"--but as soon as I got online and started reading descriptions of the symptoms, I realized they were talking about me.

It's only been a few weeks, and in some ways, it still doesn't seem real. Still trying to wrap my head around it. Have definitely appreciated this resource!

[SleepyDroola]

You ARE empowered to do something about it. You can live life the best you can. It's freaking hard, but it is possible. It takes a little while to get the right treatment plan, and it does change with time. The biggest thing you can do is to keep try and to continue to take care of yourself to the best of your ability. That means all the normal stuff - eating right, cutting down on sugar and caffeine, exercising, drinking plenty of water, and scheduling naps just right - but it also means reaching out for support when you need it.

Oh man, thanks for the encouragement In the past few weeks I have been paying better attention to myself and trying not to beat myself up over needing to lie down or feeling sleepy. Saw the doctor again yesterday and I will try some stimulents for a week before going back to see him in a week or two and discussing if that is the way to go or if I will try something else.

Good to hear other stories of those that finally went to the doctor!

[jege15]

Im new to this Network and this is my first response to all the things i've read here. I started to see changes in my sleep habits in college, i remember having sleep attack all the time and in unusual moments like: On the way to a soccer game to another city, movies, on dates, in the club, and the worst was when i enjoyed something but still had to sleep for example when i was playing x box or something. At the time i was partying a lot and doing a lot of cocaine so i didn't know if i was tired and needed more coke or if there was something wrong with me. I remember landing my first real job as a security guard as a door man. I didnt want to dissapoint my parents cu' they were the reason i got the job. But standing in a door waiting for somebody to open it was no t gonna work for me. I would have the craziest sleep attacks ever. I started with cataplexy attacks only when i would laugh and my cheeks would look "saggy". People wouldn't say much because I would try to hide it but it got to the point were i could stay awake in ANY car nor at dinner time. I just got diagnosed 3 years ago after i saw my first you tube video were a girl would speak about her symptoms and i swear i could pause the video and finish her sentences. That made me look for help, they gave me provigil but told me not to take it unless i worked, because the "medicine was made to help the working class" so i dint take it. I have studied this disorder as much i can and have been able to control my laughters a bit, also i'm learning how to avoid sleep attacks. It seems i get them when i sit down to watch tv or when im bored. Im trying to keep my naps at a minimum of 10 minutes to get me that boost of energy i need, and to stop drinking beer and/or Monster energy drinks cuz' they sincerley do not help me at all. Everybody feel free to send me any feedback because i would like to help anyone if they have any questions.