After many questions from my doctors and talking to my parents about my childhood I realized I have had Narcolepsy with Cataplexy since early elementary school. My mom remembered that my teachers were always calling her and having meetings about me because I never could stay awake in class. Thinking back I remember that every time I did homework or read I couldn't stay awake and my step dad use to yell at me for it. When I was 13 I experienced severe changes in it when I could not stay awake while on a fun vacation. Also from about age 7, every time I laughed my muscled went weak and my body went limp and almost every time I would collapse and pee my pants, all the way through high school. I haven't peed my pants from laughing since I was about 19 but I still get weak and limp when I laugh really hard. I also almost every day suffer from facial/neck/jaw cataplexy attacks from stress when at work. Just wanted to see if anyone else has had it since they were kids and if others relate.
Since age 6. Not diagnosed until age 42. Now nearing 64. Lots to tell, if you're interested. My first 8 school years were in Catholic Schools, with abusive and sometimes psychotic nuns (during the 1950's and 60's). There's much talk about the crimes of priests, but not much about the crimes of nuns!
Yes once I was diagnosed with narcolepsy last year.I started thinking back… Growing up if you wanted to find me. I was normally curled up sleeping. In a nest of stuffed animals, blanket’s or clothes. I was told to put away but didn’t. I always fell asleep reading unless it was something I really wanted to read. I was homeschooled so going to sleep was not that big of a issue. Don’t know when it actually started. Cause I was always sleepy from the day I was born.
Hi All,
Sounds like my childhood. The teachers always said that I was "dreaming in class and didn't pay attention, had the horrid nightmares, dreams that I couldn't move my body.
Tested high in annual tests but almost failing class work. I likes seats by the window so I could stare out and relax.
Didn't find out till I was about 59 that I have narcolepsy. It explained a lot about my life.
Take care all!
Ranger
I wzas in high shool taking NOZdoo and just started drinking Diet Cokes . No one would believe me:
do not sleep enough, anemia, lazy, no interest, drinking, etc. FINALLY a daytime sleep study at MUSC Charleston
proved that I had narolepsy and 2 night time studies show insomonia. I was 59 yrs.old! His oldest and only person over the age of 40 that had been diagnoised..
Have faith. I almost had to stop working and driving until the final drug was presribed. I realize the world would not ome
to an end if I could not drive!
I wish you the best of luck in your struggle. Peace, Helena
As soon as I turned eleven my narcolepsy started to occur. I wasn't diagnosed until I was fourteen yet I started taking medicine at twelve. The only reason they knew was because my narcolepsy was excessive. Now I'm seventeen and struggling to cope with school, my independence and the fact that I may never be able to drive!
At least for you others narcolepsy didn't completely take over your life as a child. I feel like I'm missing out on some huge life experiences!
Webbibe, Life is a challenge. I am sooo thankful that you where able to find out what you are dealing with at such a young age. I am sorry that you feel like you are missing out. I hope you are able to find a balance. When you can make a list of everything that makes you “you”. Because you are not just one thing 
And narcolepsy is not you it’s just part of you. Like I tell people “I am who I am. Which is Wife, Mom, daughter, sister, friend, stubborn, creative, cook and much more” I hope for and wish us all a little beauty in each day.
One day at a time,
Rachel
My son is 17. He started having sleeping and waking problems around 11 and was just diagnosed this summer with narcolepsy without cataplexy along with another nighttime sleep disorder. He wakes himself up 12 times every hour with periodic limb movements, so, even though he was "sleeping" for 18 hours a day, he never got more that 5 minutes of sleep at a time. Between 11 and 17, he was diagnosed with 3 psychiatric disorders that included 2 hospitalizations, and his neurologist believes that these psychiatric problems were all symptoms of fatigue.
The great part of being diagnosed young is that all of these other labels (lazy, angry, depressed, anxious, ADD) have gone away and now he is really only focusing on getting to a normal sleep/wake cycle. The hardest part for him is that he can't do the normal things teenagers do, like hold a job (and make money!) and go out at night. We didn't have a choice but to homeschool, and it has helped in a number of ways. He is saved from the embarrassment of falling asleep in class and being labeled lazy, and he feels a sense of accomplishment because he can finally control his learning by only doing school work during his most wakeful hours. With medication, those wakeful hours are increasing.
His life is so much better now that he has a diagnosis and has started medication. He was elated to know he had narcolepsy because life with those other labels was miserable. He is only looking at the positive side of all of this- what he CAN do now vs what he couldn't do without the diagnosis and medication. I'm still worried about a career choice for him if he never gets to enough wakeful hours, but one hurdle at a time.
Webbibear said:
As soon as I turned eleven my narcolepsy started to occur. I wasn't diagnosed until I was fourteen yet I started taking medicine at twelve. The only reason they knew was because my narcolepsy was excessive. Now I'm seventeen and struggling to cope with school, my independence and the fact that I may never be able to drive!
At least for you others narcolepsy didn't completely take over your life as a child. I feel like I'm missing out on some huge life experiences!
Based on my parents, I showed signs as an infant, but they had no idea I had a sleeping disorder. I would always sleep compared to my twin sister who would always try to wake me up. They said often as I sat watching TV in the livingroom on the floor I would fall asleep sitting up. They even talked about me falling asleep in our birthday cake. But I didn’t get diagnosed until my mid thirties when my father insisted that I go for a sleeping test. They still didn’t know about narcolepsy. They just knew something wasn’t right with me sleeping all the time.
I did, but did not realize it until way later as an adult. I didn't have cataplexy, excessive sleepiness, or sleep attacks as a child, but I did experience some more disturbing things. As early as 3 I started having night terrors, and early onset and excessive rem sleep. I have had dreams at 3 years old that were so vivid and detailed that even now I can remember them clearly as if they are a memory of something that really happened instead of a dream. At 4, I started having dreams that I would continue to dream after waking up. I remember one of the most frightening ones that happened on several occasions. I would dream that I was in a car, and the car kept crashing, it would crumple up all around me, and then uncrumple itself and continue driving until it would crash again, over and over again. I would wake up and scream for my mom. She would come in and sit with me while I cried and begged her to help me. I can remember my mom sitting in bed with me and I could see her and knew that I was awake, but as if hallucinating I could still see the dream happening. I was so young that I could not explain to her what was happening Things like this happened for a cpl years and then one day it stopped, and sleep walking took it's place. My mom was a nervous wreck, lol. She even had to put a dead bolt on the front door where I couldn't reach it after discovering me outside in the driveway one night.
I was born with narcolepsy. I recall my symptoms since I was three years old. My parents did not notice it and when I told them they did not believe me. By the time I started elementary school the teacher thought I needed glasses because I could not read whole paragraphs. The letters kept either jumping out of the books or rearranging themselves, on top of that I had micro sleeps. But here is the best part... I was exorcised for the first time when I was 6 years old. The spirit that causes blindness got cast away from me, no joke, those adults around me believed that, they still do. I have been exorcised a bunch of times for all kinds of reasons. I learned very young that the only way for me to survive in such an ignorant cult was to play along, and I did. Some churches/religions have demons for every single thing, from a cold to porn addiction. All bad things are caused by demons. Add to that my symptoms, seeing things that don not exist or are not there, hearing voices, getting panic attacks, collapsing out of the blue, talking without making any sense, sleep paralysis, night terrors, getting freezing cold when the temperature was 90 degrees, etc, etc.
Wow! I had not thought about that you could have narcolepsy from day one. Everything I have read or been told the past year. Is it can start after the age of ten. But heard nothing about starting sooner then that. As a child I would wear sweaters even when it was 90 outside. I was also a twin. But my mom lost her at birth.
Little is known about sleep disorders and the way our brain works. Narcolepsy studies are relatively new and like many or most disorders it can be inherited. I believe it runs in my family. My mom presented symptoms her entire life but never got diagnosed, same with my granny. That side of my family have always talked about seeing ghosts and talking to them, having paranormal experiences like astral projections and spiritual travels. I think they are all narkies like me.
Yeah I’m keeping a eye on my kid’s as they grow. My daughter started getting headaches last year. So, We have to keep her hair cut above her shoulders. It help’s her not have as many. I don’t know of anyone in my family line that has been tested for narcolepsy. But a lot of them have sleep apneaand blood sugar issues. I do believe some of em have it too.
My dad's nickname in high school was Sleepy :). I've also read that narcolepsy doesn't tend to run in families, but I think it does in some.
My mom said she and my dad had to wake me up to play with me. That's weird! My mom was a nurse and when she told the doctor I was lacking in energy I'd have to get my blood drawn to find out if my iron was low or if my white count was high. My first stimulant was prescribed in high school but I didn't think it helped. Diagnosis came at 40. Narcolepsy was my "normal" and I spent my life fighting it. I'm happy to have a diagnosis.
Our collection of stories here is really interesting!
Actually Webbibear, even though I wasn't diagnosed until I was in my late thirties, I can't say my childhood or teen years were normal. I spent a lot of time to myself. I was easily agitated and in my head much of the time. My focus was not always there and I experienced depressive episodes, but I didn't know it at the time. I wasn't diagnosed with chronic depression until my late thirties as well. I literally slept my life away and didn't understand why I was always so sleepy and annoyed and I couldn't explain the thoughts in my head. I felt no one would care or understand. I had my moments where I was outgoing and had fun, but I don't remember that many. I missed out on a lot of special moments in my teenage years that I hate thinking about it and it is still difficult talking about moments missed. I feel like the odd ball when people start to reminisce on their teen years, because I can't relate. Not to mention, most of it is a blur. Searching or details is a huge effort, that I just give up. If it wasn't for my sisters, I probably would had been a lonely child.
Webbibear said:
As soon as I turned eleven my narcolepsy started to occur. I wasn't diagnosed until I was fourteen yet I started taking medicine at twelve. The only reason they knew was because my narcolepsy was excessive. Now I'm seventeen and struggling to cope with school, my independence and the fact that I may never be able to drive!
At least for you others narcolepsy didn't completely take over your life as a child. I feel like I'm missing out on some huge life experiences!