Non-24 Awareness Day! (Part 1 of 2)

November 24th is...





Did you know?

The first Non-24 Awareness Day was on November 24, 2013. 

To help bring awareness to this often underdiagnosed circadian sleep disorder, I'll be sharing two interviews I've done with people who live with Non-24 Sleep-Wake Disorder. 


My first interview is with Yosuke, who lives in Tokyo. We started following each other on Twitter/X, where I often use the hashtag #Non24. 

How did you get through your school years with Non-24? 


Actually these days were tough, since a lack of alternative measures like home schooling, I just had to go to junior-high/high school day by day with free-running and of course I had tons of absence. Once my home-room teacher told me, "1 day. 1 more absence and you're gonna have to repeat a school year, so if you don't want to, just come to school." so I had to drag my body to school like a zombie. While I was a student I had no idea rather than free-running so basically I had no choice. 


Did you have to eat at the same time as your family? 


Nope, at least when I was 14 yo I was free-running and couldn't be able to get meals at the same time everyday. So my mother had kept meals in the fridge like "take them when you want to", we called it "cafeteria system". Because of it, unfortunately I have almost no experience of meals as a family.


Did you force yourself to stay awake even though you were exhausted? 


Yes. I have no idea how many days and nights I had spent to force myself to stay awake to do something. Sometimes I successfully awakened, sometimes I couldn't and missed important opportunities in my life. 


And is Dayvigo helping you now? Can you sleep on a more regular schedule? 


Yes, and yes. Nowadays I'm taking Dayvigo + Rozerem (Ramelteon) + Abilify (Aripiprazole), and the lineup is working well enough for me to sleep like a regular person. I've tried to not take 1-2 of them but it just brought me back to free-running so I guess the lineup is the best for me so far. Actually I'm still having mid-awakenings and can't say "I'm sleeping well" but still so much better than free-running. 


How and when did you understand you have a different circadian rhythm for sleep (Non-24)? 


At first, I got diagnosed as a non24 when I was like 20 at the nearest big hospital I randomly visited. But I don't think the doc who diagnosed me thought it's that serious, he was simply like "your sleep-log is like a staircase, and according to the textbook it's so-called non24, so you're non24, and it's a type of rhythm disorder, so just take Zolpidem and let's see how it goes." Although he taught me what's  exactly going on with my body clock and circadian rhythm, he didn't tell me how it's hard to fix and how it's gonna be tough to live as a non24. So I just thought it's a type of kinda illness and "Okay I'll work on it when I'm not busy, for now I can handle free-running". Unfortunately the med didn't work well for me and I had stopped seeing the doc but certainly this was the moment I understood that I have a different rhythm for sleep.


What I'm saying is like "the 1st doc certainly diagnosed me but he was not good enough to make me notice what's actually going on".


Was it difficult to find another doctor to help you? How did that happen?


After 20 years of free-running, I finally gave up with it and visited a primary care doctor and he introduced me to a highly specialized hospital for sleep which I'm now going to. And they diagnosed me carefully and precisely as a non24 (2nd time of diagnosis in my life). So it was actually an easy step to reach the 2nd diagnosis but I think because it was Tokyo, the big city. According to my non24 friends on Twitter, it's so hard in Japan to find a doctor who is good enough to diagnose rhythm disorders.


Thank you so much, Yosuke! You can find him on Twitter/X here: @YOSUKE_T


Naomi Mittet is a board member of the Circadian Sleep Disorders Network. 

For more information about Non-24, check out the Q&A page from Circadian Sleep Disorders Network: 

https://www.circadiansleepdisorders.org/docs/N24-QandA.php


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