A morning with narcolepsy

It’s Easter Sunday.

We’re waking up. I take my Nuvigil and I roll over to cuddle with my husband, putting my head on his chest.

Misty Bear and Nimbus are jumping on and off the bed: “MEOW MOM MEOW DAD QUACK ITS MEOW MORNING QUACK FEED US MEOW.”

“Meow food now meow.” – Misty Bear

And suddenly the bed drops 6 inches and I desperately grab on to my husband.

“Are you okay?” he asks.

“Did you feel that?”

“What?”

And I realize that I was hallucinating, even though I now have the actual experience of being in a bed that falls 6 inches. I shake it off, this isn’t uncommon, but I don’t always have another person around to get immediate feedback on what is and isn’t the generally agreed upon reality.

(Oh yeah – our Nimbus quacks. It’s pretty entertaining and we make fun of her for it.)

“Quack Food Quack.” – Nimbus

So I’m standing in front of the fridge. I open it up to grab the vitamin d and drop the small glass bottle on my big toe. Shit that hurts! And thank goodness the bottle didn’t break! My foot spasms and I come to. IM STILL IN MY BED.

Shortly after, my husband gets out of bed to feed our bears.  It takes me another hour in bed to kick REM, and then another hour to “wake up”.  I stay in bed perhaps longer than necessary because I’m hoping that some extra sleep will make me feel awake. That’s not how my brain works though. No amount of sleep will ever make me feel rested because the brains of people with narcolepsy (PWN) don’t go through the sleep phases in the correct order and for the correct amount of time required for sleep to be restorative. PWN experience characteristics of sleep – such as REM, or dream sleep – while they’re awake, and characteristics of wakefulness while they’re supppsed to be asleep.  When I finally get out of bed, I feel groggy, drugged, and sore. I spend the day sleepy and lusting after any horizontal surface. Thanks narcolepsy!

Narcolepsy Princess, unedited

I’d love to hear your experiences, questions, etc in the comments!

(While I’ve had symptoms of narcolepsy and cataplexy for most of my life (more than 20 years), I was only diagnosed in Feb 2017. Nuvigil is still new to me, and my dose is perhaps not yet optimized. I’m waiting eagerly to get my first months supply of the highly-regulated, narcolepsy/cataplexy miracle drug Xyrem.)

(And if you’re thinking “how the hell does a poorly medicated PWN write a blog post at 630am in the morning?” Let me give a shoutout to WordPress: I can be writing this during an inconvenient period of wakefulness at midnight and schedule it to post at 630am! I love features!)

15 Replies to “A morning with narcolepsy”

    1. I’m glad you enjoyed it! Thank you so much for reading! It would make my life if I could save someone some of the struggle that I went through. I have so much information I want to share on my own experience and on resources I’ve found along the way so I will keep it coming 🙂 ❤

      Liked by 1 person

      1. I totally relate to this feeling. I was recently diagnosed as well, at the beginning of March, and I feel like I wish I could educate everyone about what narcolepsy REALLY looks like (as in, it usually does not look like someone falling asleep in their dinner or in the middle of walking…). I feel like if more people were aware of what narcolepsy really is then maybe others won’t have to lose so many years of their life to the sleep monster before they get diagnosed. I probably started showing symptoms when I was around 13 or 14, and I’m now 27. I feel mostly at peace with this… I know my life would be so different if I had been diagnosed earlier, but I would have missed out on some pretty awesome things as well. I would not have met my husband if I had been diagnosed sooner (since I’m sure if I was properly medicated I would have finished college in 4 years instead of 8 :p and then I wouldn’t have been living in the city where I we met). Things happened the way they did and I can’t change that now, but it breaks my heart to think that there are other people out there struggling like I did and probably just beating themselves up, wondering why they are so much more lazy and less motivated than everyone else. That is the best part about being diagnosed. It confuses me when I have told family members that I was diagnosed with narcolepsy and I can clearly see pity all over their faces. I don’t feel sad about it at all 99% of the time… I feel relieved and happy and like I finally understand myself. I’m not lazy, or crazy, or hallucinating that I’m way sleepier than everyone else. I spent so long thinking “maybe this is how everyone feels, and I’m just a failure for not being able to keep up”. But no! I’m missing a chemical in my brain, and I have the spinal fluid test to prove it. I feel like I can finally give myself a break and work with my sleepy brain instead of constantly fighting against it, and as a result I’ve felt so much happier and more productive. Okay, I’m sure the meds help too. 😉

        I also cracked up at your description of “morning hands” in your other post. I think it’s funny how we end up with weird descriptors for our cataplexy way before we ever know what’s really going on. Mine affects my knees the most, and I’ve always described it as “that feeling when your knees stop working.” When I would fall down while laughing at a particularly funny joke and whoever was with me would look at me with confusion, I would always say “you know, it’s that feeling where your knees stop working when something is really funny!” That would usually be met with way more confusion and some wtf looks, but I was always SURE that it was something everyone felt and they just weren’t as conscious of it as I was.

        Anyway, I found your blog on instagram, after coming across your drawing pictures. 🙂 I’m also interested in art but I never allowed myself to make time for it when I felt so guilty about not even being able to keep up with my responsibilities. Now that I am finding myself with much more “awake” time during the day I hope I can start to fit in some creative stuff. Sorry for writing you a novel, I just relate to a lot of what you said. Keep writing! And btw, we also have two cats, and one of them also doesn’t meow in a traditional manner. :p

        Liked by 1 person

      2. I found myself nodding to every sentence you wrote because OMG WE ARE SO SIMILAR. Our frustration about how N/C is perceived in pop culture and even by doctors that leads to lengthy diagnosis times. The feelings of laziness and stupidity. Our conviction that WE NEED TO DO BETTER THAN THIS! Lives are ruined, smart kids think they’re lazy and stupid when it’s almost the opposite of that! We fight so damn hard just to get out of bed every morning.

        I’m so glad that you’re at peace with the diagnosis. Did you go through stages? I’ve been going through the full-fledge grieving process: relief, anger, depression, denial, fear, all of it! Excitement has been the most common feeling, though. And I’ve had a similar experience with watching people around me deal with my diagnosis. My husband is TOTALLY thrilled bc it explains EVERYTHING. Close friends are also so excited bc they’re intimate with my struggle. But my parents are upset, and I think just so sad that they couldn’t protect me from such an awful disease. Ultimately I think people will come around when they realize that this is the piece that’s been missing from our lives.

        What meds do you take? I’m starting xyrem and am so eager to know what “rested” feels like! I’ve been taking Nuvigil for 1.5 months and it was FANTASTIC the first week and then I stopped feeling the wakefulness. Now I just feel like it’s helping me stay standing during the day.

        And our cats! 😂

        Thank you so so much for taking the time to read and for sharing your experience! Do you have a blog? Insta? I’d love to follow along with your journey!

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      3. Also the art! I can’t wait to see what you decide to pick up now that you have permission to set boundaries around other responsibilities! I think that’s so much of what the diagnosis had done for me: given me permission to set boundaries without feeling and being perceived as a lazy copout.

        We gotta stick together! I’m glad we can be on this journey together!

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      4. I don’t know why I can’t reply to your replies to me. I suspect it might be user error on my part… so sorry that I’m replying in the wrong spot here. :p

        I did sort of go through stages. First was a LOT of denial. I “failed” my MSLT (yay, anxiety!) and knew it immediately. It was not even a semi-accurate representation of how I normally sleep. The tech who evaluated it wrote in his report that he “doubts this is genuinely narcolepsy”. My neurologist was still certain it was narcolepsy (thank you, cataplexy… I guess), but I went through a few weeks of complete denial that it was (“if it was really narcolepsy, I would have slept on the MSLT no matter what”). At that point my lumbar puncture results weren’t back yet. When we got those results a few weeks later it confirmed narcolepsy. My hypocretin concentration is 80pg/mL… anything below 150pg/mL is considered diagnostic for narcolepsy with cataplexy (in the US I think they are still using 110pg/mL as the cutoff, but it was below that too). But even then I was in denial! I read that most people who have narcolepsy with cataplexy have “undetectable” hypocretin levels, and mine was obviously detectable. I did a LOT of reading of different medical studies (I’m pretty sure I now have a better understanding of narcolepsy than all of the doctors I have seen, apart from my neurologist of course) and found that my hypocretin concentration isn’t really out of the ordinary AND that having such a low concentration basically guarantees that I have narcolepsy with cataplexy… it really CAN’T be anything else. So I had to give in and accept it. I sometimes feel a bit sad, like when I’m having a sleepy day despite meds and I realize that this is going to be my reality forever. And definitely fear! My husband and I hope to have children soon and I definitely worry about how I will manage with that, although I’m feeling less worried now that I know medication helps. Now I’m mostly just not looking forward to having to be unmedicated while pregnant.

        I’m taking Ritalin right now and it seems to be helping. I had the same feeling – it was really great at first and now a bit less so. I still seem to have random sleepy days, but the Ritalin seems to prevent me from napping which is unfortunate… I’ll feel super sleepy but yet unable to fall asleep when I lay down to nap. It’s definitely great if I’m really active, but the sleepiness still seems to creep in if I’m on the computer or reading or doing anything else that doesn’t involve a lot of movement.

        I don’t have a blog (it would seem I am pretty verbose and I think that might get exhausting to read), but I did make a new instagram account right after being diagnosed… it’s suddenlysleepingbeauty. I haven’t posted much on it yet, but I just followed you so it should be easy for you to find. 🙂

        And yes, we have to stick together! I love the internet. I can’t imagine how lonely I would feel without it, I’ve never met anyone else in real life that has narcolepsy!

        Liked by 1 person

      5. It wasn’t you! I found a default setting for comments on the blog that only allowed there to be a limited number of replies in each comment thread, but hopefully it works now!

        That sounds like a nightmare diagnosis process! I didn’t fail my MSLT but OMG I THOUGHT I did! The night before I went in to get the results I was sobbing “this test was made for me and I blew it! And now they’re gonna say I’m fine and I’M NOT FINE!!!” My husband was fantastic. He looked at me calmly and said “I know it’s scary. I’ll be with you at the appointment. If the neurologist tells you that you don’t have a sleep disorder I’ll tell him that ‘yes, she does’”. And that made me cry harder and I mumbled something ridiculous like “you would do that for me?!” I’m sure you can imagine the exchange: traumatized person who’s used to being told “you’re perfectly healthy suck it up” sobbing to husband who’s looking at the situation like “clearly something’s wrong, something’s always been wrong, and we’ll figure it out, we’re in the right place” and it was almost as though I couldn’t hear him.

        My average sleep latency was mind-bogglingly fast but I didn’t have any sleep-onset REM periods during the naps. That’s where my doubt came in and I thought “shit, I swear I have it let me do it again!” But my neurologist didn’t doubt it for a second because, like you, my cataplexy is a dead giveaway.

        I know the ritalin zombie feeling you talk about. Ugh. And I’ve thought about the medication + pregnancy thing, too. I’m not ready for that yet but that will definitely be something that we’ll have to figure out in the future.

        I don’t know what I’d do without the online N/C community! It’s so freakin lonely! How lucky are we to be able to cruise the internet in between sleep attacks to stay connected? ❤ ❤ ❤

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    1. Thank you for reading and for your comments and support! It means so much to me! And ohmygosh I’m learning so much more about myself right now. It’s been a sleepy/ confusing/lonely/painful 20 years and I finally feel like I’m coming “home”. ❤

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  1. It is great that you are able to share your experiences with narcolepsy. I think it helps others in that to understand how someone experiences an illness, which is different than a listing of symptoms. I hope it also helps you as well.

    I take provigil/modafinil, similar to nuvigil (though I’ve tried nuvigil and like it a bit better than modafinil). I have fibromyalgia and chronic fatigue syndrome, which has brought on sleep issues – I usually get 3-4 hours of sleep a night. For me, the fibro makes my sleep worse, and then my lack of sleep makes the fibro worse. The provigil does make my quality of life so much better, in that I can now wake up and be somewhat functional during the day.

    Liked by 1 person

    1. Thank you so much for taking the time to read, Marie! I’m sorry for taking so long to respond.

      Why did you choose modafinil over armodafinil? I’m glad that you found something that is (semi) working for you right now, but I understand what you mean about only being “somewhat functional”.

      And I can totally relate to the symptom feedback loop – when the symptoms cause problems that exacerbate the symptoms and so on and so forth.

      Writing the blog is expanding my community which is what I need during tough times. I love having people to fight with!

      Like

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