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How bad was your quality of life before diagnosis?

Could you get through a day without napping? Were you productive at all? Could you get up in the morning?

For me, I would often go entire months without a single hour of real productivity at any point. It was totally destroying my education, often I would sleep for 12 hours and then wake up feeling like I had not slept at all, and then take 3 hours of naps during the day. I wonder how normal that experience is.

  1. This seems very normal to me When I was diagnosed the doctor told me that if I had not got diagnosed the symptoms would continue to get worse and worse. It was a nightmare for my parents to get me out of bed. { funnily I still struggle with this even on medication.) I sleep on the bus on y way to college, through all my classes. I was always falling asleep and non of my classes were very interactive. This is what helped me get diagnosed the teachers were so concerned.

    1. Sorry to hear about your pre diagnosis struggles, I can relate on every level! I have always and still do struggle with mornings. At the moment, I still do all of the things you suggested about before diagnosis, 10 years into my diagnosis. I can't function if I don't sleep at least around 12 hours usually, need naps and mornings are incredibly difficult. Before I was diagnosed I regularly was late for my morning classes and often skipped them altogether. I remember getting into trouble at sixth form college (UK, age 16-1😎 because I was missing around 1/5 of all my classes. At uni I almost never went to morning classes (don't know how I passed my course haha!) Jobs where I had to be up in the morning, have always been difficult. As for productivity I can definitely relate to feeling like I was not productive or starting things and never finishing because I had a sleep attack. Hoping things have improved for you but in any case, please know your worth is not your productivity. This is something that took me a while to come to terms with but helped me a lot to realise. I also think every person is different though there is such a wide continuum of narcolepsy experiences. Sending lots of support, how are things for you now since your diagnosis? Best Wishes, Lauren (Team Member)

      1. It's definitely true that there seems to be enormous variation from person to person. I really really hope that stimulants make me less tired with minimal side effects because at my current level of constant sleepiness I will have to drop out of school no question. For me, whether I sleep for 14 hours or 5 hours my sleepiness never dips below 8 and frankly only dips below 9/10 (severely tired borderline asleep) once or twice per week.

      2. Yes exactly, so please don't be disheartened that I have not found something for the sleepiness yet (and I still hold out hope for the future). I have met people who say they barely even feel any symptoms any more from treatment so there is such a scope of possibility to improve things! In the meantime, have you thought about having a chat with your school about accommodations? There might be things that can be done even now to help you which has made a real difference to a lot of people. This article gives some tips and possibilities around that You can even tell them you are in the process of diagnosis if that's not final yet and get the ball rolling on that already. I'm so sorry to hear about how you're struggling with the sleepiness, I really get it. Just had a sleep attack now before I answered this! Hold tight and know that most people will see improvement in one way or another with their symptoms from treatments. It will likely not solve them completely but will definitely have an impact and new things are coming out all the time. Theres a lot of natural things to try too like ginseng which helps some people so you could talk to your doctor about this kind of thing (please chat to them before making any lifestyle changes). In the meantime and always, we the sleepy community are here for you! Best Wishes, Lauren (Team Member)

    2. My quality of life before my diagnosis was not great at all. I would try every excuse in the book to stay home from school. I would sleep 24/7 and still be tired. I couldn't keep a job for more than a few months. I has symptoms for 20 years before my diagnosis and getting diagnosed was life changing!

      1. Hey ! For the first 3 years after my diagnosis I did not nap once! I had no clue that I was even supposed to since no one told me. It's only been the past 6 months that I have been super strict with my nap times as before I had a crazy job that wouldn't even allow me to have lunch most days lol.

        But now-a-days I can't live without them. Most days I once or twice but there are some where I will have 3 naps. I used to feel so bad about it before but now I make no apologies! It is just as important as taking our medication correctly or having a healthy diet...and people have to understand that.

        Having naps is taking care of yourself and respecting your condition. That's how I see it at least. 😀

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