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Fill in the blank: The hardest thing about living with narcolepsy is ___________.

What is the hardest thing about living with narcolepsy? Share your answers below!

  1. Most frustrating for me is waking up after "sleeping" for at least 7 hours and feeling as though I haven't slept in days! Then, if I try to go back to sleep, I start dreaming right away. When I wake up again, my head is buzzing (like white noise) and it takes me a while to fully awaken. Very frustrating!!<span style="font-size: 1rem;"></span>

    1. That does sound frustrating, . Are you on a treatment plan that helps? Thinking of you. - Lori (Team Member)

    2. I think I know what you mean when describing the "white noise" or "buzzing" upon waking! I also experience this... It even gives me a bit of a pain in my head, like a 'ZAP'! I wish we had an official word to describe this symptom! It isn't uncommon, from what I've heard in the community. Sorry you struggle to get restful sleep, too. It's unfortunately one of the realities of living with narcolepsy. How are you managing life with these symptoms? Warmly, Tatiana ( Team Member)

  2. Hardest? How do you pick just one??

    1. Even with meds, I still get sleep attacks daily, some larger than others.
    2. Pre meds, I was having frequent cataplexy that looked like seizures. With meds, my cataplexy is significantly smaller, but the frequency has increased to almost daily. I am constantly toning myself down and trying not to laugh.
    <span style="font-size: 1rem;">3. The result of #2 is I appear to be the grumpy one at work. </span><span style="font-size: 1rem;">People at work talk behind my back but I hear whispers still. Genuinely worried I am going to loose my job soon.</span>
    4. As a result of #1, I have managed to keep my license but have had to significantly lessen to driving. It feels like my independence has been taken away.
    5. I am constantly choosing between social events or errands, or naps. If I push through with no nap, I end up with a migraine and my cataplexy is worse for the rest of the night and into the following couple of days.

    The list goes on but those are daily "hard" things for me.

    1. Hi . I wish your coworkers were more supportive. Is your employer aware that you have narcolepsy? If not, you might want to consider notifying your employer. Narcolepsy is considered a disability, which means you are entitled to reasonable accomodations. I really hope you don't lose your job. Thinking of you and sending the very best of all wishes your way. - Lori (Team Member)

    2. I understand from my own experience how much these issues impact those of us with narcolepsy. Driving with narcolepsy can be difficult - I had to stop driving until I was able to get my treatment plan stabilized. I've actually written an article on narcolepsy and driving, which you can find here: You aren't alone in this! Medications aren't a "fix", they simply lessen symptoms for me. This is helpful, of course! But I still am tired every single day. I understand how difficult it can be to have to live life while trying to control cataplexy! And employers can be difficult when it comes to accommodating disabilities, including narcolepsy. I wish you the best of luck on your journey, please take care of yourself best you can! Warmly, Tatiana ( Team Member)

  3. Living. I have zero quality of life between narcolepsy and being in constant pain and i cant do any of the things i wish i could be doing instead of sitting on this couch.

    1. You have so much to contend with, . It shouldn't have to be this way. Are you taking anything for your PsA? Are you aware that we have a sister community for people with psoriatic arthritis, You might find some much-needed extra support there as well. It is a very active community with lots of wonderful advocates. If you could just get one of your health conditions under control, maybe the rest will be easier to handle. Thinking of you and wishing you the very best. - Lori (Team Member)

    2. I also suffer from narcolepsy and other chronic illnesses, and I can attest to this. It's so frustrating to want to live life, and not be able to get out of the house to do it. My symptoms worsen if I push myself to do too much. Doing a fun activity always comes with a few days of recovery, unfortunately! Sometimes even longer. I hope you know you're not alone in this. Thank you for sharing with our community. Warmly, Tatiana ( Team Member)

  4. Staying awake throughout the day. It irritates me and makes me depressed in just sleeping all day.

    1. Sleepiness can make anyone irritated, but facing it every single day, all day, no matter how much or how little you sleep at night must be maddening, . Do you take any medications or having any coping methods that help? Thinking of you. - Lori (Team Member)

    2. I get it - I also live with narcolepsy and know how painful it can be to be tired all the time! I talk about living with this excessive daytime sleepiness in my article found here: You aren't alone in this! Warmly, Tatiana ( Team Member)

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