Tags: Guest blogger, Non-24
Perhaps I’ve “arrived”, when Healthline.com approaches me with an offer of a guest post? I said yes, please. So here is the article by their health-and-fitness writer Adrienne:
Thank you Healthline and Adrienne, for the timely article! —D
Non-24 — Not Just a Disorder of the Blind
Non-24-Hour Sleep-Wake Disorder is not a condition that a lot of people were aware of, at least until the first medication for it was approved by the U.S. Food and Drug Administration earlier this year. The advertising for Vanda Pharmaceuticals’ new drug has brought some attention to the disorder, but since the drug is aimed at (and only approved for) those who are blind, few realize that the disorder can and does affect sighted people as well.
Non-24 in Layman’s Terms
Non-24 is a circadian rhythm sleep disorder that causes people to be unable to adjust their sleep-wake cycles to a 24 hour day. This causes their sleep time to progress around the clock. To put it more simply: Each night people who have Non-24 go to sleep later than the night before, each time sleeping in the next day in accordance with the time they went to bed. They go to bed later and later every day, eventually ending back at the same bedtime and starting the cycle all over again. As you can imagine, this doesn’t only interfere with day-to-day responsibilities, but it can also lead to daytime sleepiness, memory issues, depression and more.
Non-24 in the Sighted
In a majority of totally blind people, Non-24 is the result of their inability to perceive light; the lack of light interferes with synchronization of their internal clocks to the day/night cycle in nature. Even though the disorder goes by the same name for the sighted as it does for the blind, the causes are entirely different. Though it’s not currently known just how many sighted people have Non-24, there are several known causes of it.
Here are some of them:
- Changes in light sensitivity. In some sighted people, even though they are able to see well and appear to have great vision, daily light signals may not get through properly, leading to disrupted circadian rhythms.
- Melatonin imbalance. Melatonin, a hormone, plays a part in linking sleep to the day-night cycle. Some sighted people with Non-24 have been found to produce less melatonin than normal while others produce too much. Problems with metabolizing melatonin properly can also impair circadian rhythm and cause Non-24.
- Trauma and physical damage to the brain. Healthy people who suffer head injury can develop Non-24 when the injury damages the circadian and sleep centers of the brain. This can also be the case with brain tumors, such as craniopharyngiomas. For some it’s the brain tumor itself that causes the damage while for others it can be the effect of treatment, such as radiation.
- Environmental factors. Sometimes it’s a sighted person’s exposure to light, or the lack of it, that can interfere with the ability to maintain a 24-hour sleep-wake cycle. An example of this, in scientific studies in the laboratory, is being in an isolated environment without access any clues as to what time of the day it is, and not being allowed to turn lights on or off as desired. In such studies healthy people will temporarily acquire a non-24 sleep pattern, though, of course, not the disorder.
- Individual sleep patterns. According to The National Organization for Rare Disorders (NORD), a person’s need for sleep could lead to a Non-24 sleep cycle. They give the example of a healthy person who may sleep 8 hours and stay awake for 16 while another person may need 12 hours of sleep but still be awake for the normal 16 hours, leading to a 28-hour day. The same can happen for a person who sleeps the normal 8 hours but then requires 20 hours of awake time before sleep again is possible, also leading to a 28-hour day.
These are just some of the known or suspected causes of Non-24 in the sighted.
- (January 2014). FDA approves Hetlioz: first treatment for non-24 hour sleep-wake disorder in blind individuals. U.S. Food and Drug Administration. Retrieved June 28, 2014 from http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm384092.htm?utm_source=rss&utm_medium=rss&utm_campaign=fda-approves-hetlioz-first-treatment-for-non-24-hour-sleep-wake-disorder-in-blind-individuals
- (2013). Non-24 in Sighted vs. Blind People. National Sleep Foundation. Retrieved June 29, 2014, from http://sleepfoundation.org/non-24/blind.html
- Fadden, James S.P. MA, Vice-President, Sharkey, Katherine MD, PhD, NORD. (March 2013). NON-24-HOUR SLEEP-WAKE DISORDER. National Organization for Rare Disorders (NORD). Retrieved June 28, 2014, from https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1275/viewFullReport
Adrienne is a freelance writer and author who has written extensively on all things health and fitness for more than a decade. You can connect with Adrienne on Facebook here.
Healthline.com is funded, apparently exclusively, by advertising and they own, are owned by or are affiliated with Healthline Networks, Inc., Healthline Corp and YourDoctor.com
Their goal is to educate and empower users with relevant and responsible information in order to foster better communication between doctors and patients.
You can go to http://www.healthline.com for more information on sleep disorders and other related conditions.
69. Next post: –another guest post–
Tags: Body clock, Diagnosis, DSPS, Genetics, Guest blogger
The body clock
A new list member wrote that his wife doubts the validity of Delayed Sleep Phase Syndrome, believes that his diagnosing doctor is a quack and believes that forcing oneself up early – often enough – will solve the problem.
Breann, with her knowledge of biology, responded:
Hi __, nice to meet you 🙂
It might help if your wife had a basic understanding of genetics. I’m not trying to be flip, many people don’t; they’re lucky if they get some Mendel in high school, and unfortunately, his “one gene, one trait” discovery is not true for everything. (The last time I checked, there were at least ten genes thought to be involved in the sleep-wake cycle. Whew!)
In my experience, it has simply never occurred to most people that they wake up or go to sleep for any reason other than being tired or not being tired; i.e. they believe it is mostly a conscious choice. They are unaware that their body has many complex and delicate systems keeping track of the time of day, how long they’ve been awake, how much or little food they’ve consumed, and so forth. Sometimes just teaching people that these seemingly simply urges aren’t TRULY conscious choices for anybody is a great help in their understanding that some or all of these systems can “go haywire” due to using a different set of instructions (different forms of the genes that regulate the processes).
Something that really worked with my friends and family was for me to simply sit them down and ask them flat-out: “You have known me my whole life. Do I seem like the kind of person who is going to malinger for decades just to get out of doing things that you KNOW I enjoy doing? Think about this logically. Am I that kind of person? Do you think I’m faking when I’m upset about getting fired, or missing an important appointment? Either your judgement of me over the last 20 years is totally wrong, or I am insane and need a lot more help than a sleep doctor.”
That flipped a light switch for them, I think. It was still hard for them to accept, and still is in some cases, but it at least got them to consider the fact that if there isn’t something wrong with me physically, than that leaves me as someone who has deliberately, yet unconsciously, set out to ruin my own life. That makes no sense, if they take a minute to think about it, and not just have a knee-jerk reaction.
Hope this helps!
Next: xlix. 2009: sleep logs
Tags: DSPS, Guest blogger
This post was written in response to one whose author also lives on a very strict schedule and thereby feels that he has “defeated” his circadian rhythm disorder. Breann feels a bit differently about it. Thanks, Breann, for letting me use this!
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I wouldn’t say that I’ve beaten DSPS. I know that as soon as I stop doing everything right all the time, things will go back to the way they were. I’ve been on the early morning schedule for about four months now, and my friends and family are really happy for me because they’ve never seen me do it for this long before. (Sad but true :p)
But they also seemed to think that I would somehow have cured myself doing it … conveniently around the time they are getting sick of the unyielding restrictions on my time.
One recently asked how much longer I would have to keep it up. I said I was looking for new chromosomes, but they didn’t seem to have any at the store 😦 Then I felt bad for being mean, but it made me mad that she seemed to think that just because I was doing things differently it was going to really change anything.
Like I haven’t tried doing things differently a million times… I have to keep reminding people that I have known how to operate an alarm clock for a long time, that’s not the part I had to learn… and none of this changes anything REALLY.
DSPS is a condition, not a habit.
Then she got kind of depressed and said it seems like a lot of work for nothing, then I got kind of depressed because it is… But, oh well, at least I can say that I have a much better chance of at least graduating school.
I haven’t beaten anything… I am just able to cope a lot better now. And it took 3 years to get it down, too!
Next post: xlvii. Distribution of early and late types
Tags: Guest blogger, Non-24
Every now and then, someone on the mail list for DSPS and Non-24 just says it so well, often in a rant. I fell for this one by J., who has Non-24-hour sleep-wake syndrome. By permission:
It’s so funny to me how many things I keep on finding out might be related to my Circadian Rhythm Sleep Disorder that I always thought were just “quirks” of mine. First of all the odd sleeping, of course, but also the fact that I am always cold when no one else is… I always thought that I just had “temperature regulation” problems, for no specific reason. And it wasn’t a big deal, but EVERYONE always commented on it. Once in my very FIRST meeting with a new psychiatrist (bounced from neurology, of course) he mentioned it and then perhaps took it as a sign of my psychosis. Right, bro, right. How about I HAVE A CIRCADIAN RHYTHM DISORDER. Gahhhh.I have also been accused of wearing long sleeves in the summer just to hide track marks (yep, I’m a lazy, psychotic heroin addict now).
I am so sick of people viewing me as crazy and lazy, which, seriously, has been the case since this whole n24 thing hit when I was a teenager.
But now at least I KNOW and can EXPLAIN how maybe I’m not lazy after all. And, no, not a junkie either! In fact the ones feeding me the drugs… who was that?! DOCTORS.
My sleep will never be normal. Trying to force it with daily drugs, morning and night, was wrong. Maybe my neurology in general will never be normal. My perception may never be normal.
I have finally started to accept it because that is the right thing to do. The doctors need to get on board with this if they want to “do no harm”.
And thanks for reading this far, if anyone did.
Tags: Guest blogger, Sleep deprivation
On our ‘niteowl’ list we give support and compare experiences. That list is a life-saver.
Now and then member Alan West, casting pearls for swine, finds and uses his most talentful pen. As here (with permission) on some results of sleep deprivation:
If the early-start enthusiast managers could somehow see the condition of the insides of our heads, I wonder what would happen? There might be some rather frenzied back-pedalling, along with long and tense conferences with their respective corporate insurance providers. Of course, there might not.
But how do we convey an accurate impression of our mental processes after early starting? After several years of early starting? Consider a more than usually drug-soaked short story. Various things happen in a headachy blur. Extraneous characters float in and out, unexplained. Strange things hide in the corners of the vision, wriggling and twitching and occasionally offering irrelevant comments in cartoonish voices. The co-workers have become a strange colour, and several do not appear to be touching the ground. Their faces have changed, and now they resemble famous people, long-dead physicists or gargoyles. The central character has to fight down the urge to slide small pieces of paper into the great creases in the faces of these gargoyles.
The story continues. By now the readers understand, with mounting unease, that our central character, combining the worst of the mental states of Hunter S Thompson, Thomas de Quincy, and several other notorious drug-heads or drunks, has driven to work, managed to negotiate the stairs, found their desk, and is about to work on a huge and vastly important project that will affect the happiness of the entire human race. Can they find their pen? Can they remember any single fact about the project on which they are working? Can they remember their name, or where they live? Why are the pieces of paper on their desk moving about by themselves? Is there a goat hiding near the photocopier, leering?
The story concludes with the responsibility and sobriety of the central character being reinforced. The reader now knows that our hero is clean-living, and of sensible habits. But the weird stuff continues as the hero continues to look for their pen….