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What have your experiences been like in school with narcolepsy? Do you have any tips?

Back to school season is almost here! What have your experiences been like in school while living with narcolepsy? Were you diagnosed at that time? Also, do you have any tips or advice you'd like to share with the community when juggling school?

Please share your experiences!

  1. I just started on this journey, my IH started when I was in middle school. Specifically when I started to read a whiole lot, schoolwork made me fall asleep, hot classrooms, monotone voices all that. It made me hate school, I would take naps or rest my eyes at home.

    I struggled heavily when I started undergrad and it got worse, still is. For school wide problems, I suggest speaking with a counselor as well if you can, if it's a solid one, maybe you can have a rest period to just sit and relax. Lol I fell asleep writing this.

    1. I've been diagnosed with idiopathic hypersomnia for less than a year now. Idiopathic hypersomnia is my official diagnosis though my doctor told me that that's just because they don't have enough information at this moment in time to officially call it narcolepsy. I started getting my symptoms in the summer, which my parents immediately dismissed, they told me that anyone who spends all day lying in the sun would fall asleep. When school started it was a living nightmare. The kids in my science class would always make fun of me, they started placing bets on how long it would take me to fall asleep. My teacher would even join in the game waking me up with funny voices and all the kids would laugh. My science partner even one time told me there was no way I could have narcolepsy because "his dad was a doctor and he would know". It was the worst year of my life, I begged doctors, took months to get a referral, and even more to get a sleep study. When they finally met with me after and told me they had no results from the sleep study I broke into tears in front of the neurologist both my parents and the resident. School had been near impossible, I had to drop out of cross country, I would get brain fog in the middle of my exams and score badly- even though I knew the stuff and nothing was working I just wanted to give up. I struggle with depression and it skyrocketed which messed with my energy levels even more. I've been struggling with the loss of appetite from my medicine and so my doctor wants me to return to school this year without medicine. wish me luck!

      1. So sorry to hear that you have had such a difficult experience at school. It's horrible when people laugh at something that is causing you so much distress! It sounds extremely frustrating having to try to get a referral from doctors and then having no results from your sleep study! I was in a similar situation, my first sleep study did not show anything so had to repeat the MSLT which was frustrating. This was happening to me while I was at school too. Is there anyone at your school that you could talk to about getting some accommodations in place? I got rest breaks for my exams which really helped. Wishing you luck. Best wishes, Bella (Team Member)

    2. When I was small( 4 or younger ), I would fall asleep during the day wherever I happened to be at the time. Narcolepsy isn't diagnosed until teens or late teens, I THINK. I remember having a conversation with my mother when I was 4, and she told me that I "would get to go to school next year". I asked her if they took naps at school, and she said yes ( I wouldn't find out until later that naps were only taken in Kindergarten ). I told her that I didn't want to go to school, and that since I didn't know those kids or those grownups, I would stay home and do things by myself. I guess I was the only one at the time who felt that was a good plan.

      I had issues with sleepiness as far back as I can remember, but it got worse as I got older. My days in school were an endless attempt to appear awake, alert, and normal. Through tons of will power, I stayed out of trouble. When I was small, I was very concerned that I would be held back a grade because something was wrong with me. That would have been bad for a kid that didn't want to go to school to begin with. When I first actually came to the conclusion that I had a serious sleep disorder, I was in college. I did some research, and figured it was very likely to be Narcolepsy, but did not seek a diagnosis until I was in my early 60's. I had decided that it may be detrimental to having Narcolepsy on my record. I already knew that many future opportunities were now closed and blocked for me. I also knew that I would have to get a degree using my own reading and studying ability, and would take deductions on things like class participation, outside work, attendance, and information imparted in a lecture that I could not stay awake through. My GPA would take a huge hit, and there was no way around it. I got a degree, with a gpa that was far lower than it could have been.

      I Looking back, there are some things that occurred to me later in life about Narcolepsy. I remember a few occasions as a small child, that I woke up feeling so good, I felt like a super hero. Those days when that happened and I woke up feeling great, happy, ready to go. It did not occur to me until I was middle aged, that those 5 or 6 times I woke up feeling that way, was the few times my brain had been able to reach the deepest stages of sleep. In other words, THIS IS HOW NORMAL PEOPLE FEEL AFTER A GOOD NIGHT'S SLEEP ! I remember thinking, wow, what a great advantage I could have if I was like that ! Fate, exists, I was chosen. I could play this game, or quit.

      I had taught myself to read when I was 4 years old. I was obsessed with knowing what the information information was by understanding all of those little marks on pieces of paper. tests on reading when I was small, put me at the top level in my grade. God had given ma a valuable work around. Without an outstanding reading ability, I would have been in real trouble I would think. Being overly hard headed, I didn't get treatment for years. Treatment is much better than when I was a kid. One of the reasons I would seek treatments, is because there are things in this world that can affect you in a major way that you are usually not totally aware because you are "in the moment" in a manner of speaking. If I had to do this again, I would do a better job of managing my perceptions, perceptions being what OTHER people have thought of you. One thing I know that hurt me more than once, were the problem I had at times when I was not doing well. First impressions, are exactly what the name implies. There have been days where, even though I can't know for sure, there is no doubt in my mind that I have created negatives results for myself because I happened to be so fatigued. When you get to that state, the "happy face" we feel works, doesn't work then.


      1. I wasn't diagnosed with narcolepsy until after I completed my bachelors degree. I graduated in 2017, dealing with EDS and extreme brain fog, and I finally was diagnosed in 2018. I am actually back in college now, and I am in such a different place now than I was then. I am established in the disabilities department at my university which allows me accommodations, like having extended time on tests for example. I also take medications that help me stay awake and alert throughout the day, and put me in deep rest at night. The medications along with my daily nap routine has made these first two weeks of being back at college such a different experience than the first time around.
        I would suggest to anyone who has narcolepsy to get themselves established in their disabilities department to get accomodations. That is the first step to helping you thrive during your time in college. Another important step is to sit down with your professors and be open and honest about what you are living with. It can be extremely difficult to wake up on time for early morning classes- let alone staying actively awake during long lectures. Sit down with your professors and ask how you can work together to give you the most out of class time. Maybe have the professor send you the weekly slideshow to review when you're feeling more alert, or have a friend take detailed notes and compare them after class.
        You know yourself better than anyone. If your body needs rest, give it rest! Don't overwhelm yourself with busy classes, clubs and organizations, and trying to work a part time job all at the same time. Listening to yourself and advocating for what you need is so important!
        Xoxo/Zzz, Gabrielle (team member)

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