r/N24

My Sleep Doctor tells me he believes that on top of my Severe Apnea, that i also have a circadian rhythm disorder , and it's almost impossible for me to sleep before 2am no matter how hard i try . I'm not sure if i trust that my weird symptoms are coming from this or not . I need some comparisons . Looking to hear Circadian Rhythm recovery stories from everyone if this is a good place to ask . please thanks

I found a few scattered versions the topic of RLS +N24, most many years old and the most recent was 6 months ago and I could not respond so I'm starting a new thread by way of my introduction to the group. I used the blog/personal article flair but very much welcome comments/discussion/relating, etc. I seek to feel less alone in this sleepy madness!

Part I - RLS
"Normal" sleep has always eluded me for as long as I can remember. That is, being asleep when others wanted me asleep. I energize at night regardless of how tired I am, so I called it "night owl. But I have also always slipped around the clock in terms of when I am able to fall asleep. When allowed to sleep as long as I want to, I used to, in my younger days, sleep a good 9-10 hours once I did sleep. As I aged another issue got worse and worse, which is RLS, which would also get worse at night and improve when the sun came up, enforcing a stay up all night, sleep as long as possible, and then be miserable the rest of the day lifestyle. That slid around tho, was never stable for any period of time.

My mom and I called the RLS sensation "jumpy legs" and thought it was a quirky family trait because she had it too. My first memory of it was around 6 or 7. I also have Periodic Leg Movement, which became clear when my first husband asked me why I kick him exactly every 13 seconds at night. I'm 63 as of this writing. I was around 30 when I first randomly read about RLS in a "rare and undiagnosed conditions" book that came across my path. I could NOT believe my eyes when I read exactly what I experienced on paper, in a book. I marveled at how the official condition had as stupid a name as what I already named it. Restless Leg Syndrome vs Jumpy Legs. Heh.

At this point, it is referred to by my sleep neurologist as severe and refractory. After trying everything else, I have been taking 5mg of Methadone and 75 mg of Dipyridamole every night for several years with pretty good success. Everyone agrees I need more serotonin, but SSRIs make it so bad I can feel it in my spine, and even my arms and legs and head will start to jerk. So that's a non-starter for me taking that class of drug. I'll just have to stay kinda borderline depressed. That said, my RLS is mostly bearable most days unless I become sleep-deprived, which is a complicating chronic problem as it makes RLS worse, because...

Part II - N24?
As of this moment, I am undiagnosed, but my RLS doctor, who is also on this Reddit's list of sleep neurologists, is also apparently a circadian rhythm disorder specialist. I lucked out on that one. I was explaining to him that I was convinced I had a 25-hour circadian rhythm a few months ago and had had that conviction for decades, but I realized there was nothing I could do about it and it probably sounded crazy. He informed me, at 62 years of age, that there is a name for it and a medication for it as well. Gob-smacked is the word I have for how that felt, and I'm not even from the UK.

He explained how there was a drug that could force me into a 24-hour clock that was made for the blind, but that out of pocket it cost about 26-28K per month or year; I can't remember which because I almost fainted at the number. Either way, no. But that insurance could make it manageable. To get them to pay for it, I have to go through a 3-week diagnostic process where I just sleep when my body wants to, and then once I have the diagnosis, it would take several appeals to get the insurance company to agree to it. That sounded so hard to do, actually, because of a lifelong habit of NOT sleeping when my body wants to. I am assuming it would be challenging to actually not fight it, especially during the day. That sounded like a frustrating and exhausting process, so I thought, nah...now that my RLS is sorted, I probably just have to try harder.

Yep, at 63, I still had the notion that trying harder would ever help anything I have fought my entire life. I guess it's because RLS was the more immediate and agonizing of the two and masking it, and between that and the fact I haven't worked for years because of POTS and FMS (both of which have their own sleep complications) I kind of got away with sleeping during the day sometimes. I didn't get to have children or a career because of all of this, so those things don't impose themselves on me since I stopped working a "regular" job about 25 years ago, thanks to a partner who has been able and willing to take care of our basic needs. But now I am officially aware that I may not be imagining the whole 25-hour clock thing, and my RLS is almost under control, and aside from random adrenaline dumps from my POTS, the cycling around the clock thing is way more obvious than it's ever been. And frustrating. So I finally told the doc, yeah, let's start it.

But then I realized I may be on Medicare in the next few years, and they absolutely will not cover this unless I am completely blind. So I'm sort of afraid to get that kind of potential relief just to have it yanked away from me after a few years and face my old age without it. So I got myself .5 mg of melatonin capsules and a 10,000 watt UV free sunlamp, with warnings from my eye doctor that it might burn my skin or retinas because I am apparently also photosensitive from the other meds I take, and tried to use that last week. Good news is that melatonin is actually good for my adrenergic POTS, which is a fine surprise given that most things that are good for one thing are bad for a another of my conditions. But after a week it isn't working. I wanted it to so bad. But I am back to cycling. My doc wrote back in the portal to say it was a good start, but won't be as effective as the med. Apparently not.

I then tried to write out a schedule for myself to see what it would be like to just go ahead and cycle around the clock and intentionally arrange my life that way. It was very confusing to write down what a month like that would be like. And still be able to take the meds for all my other issues like thyroid and RLS in a way that makes sense and that I won't completely mess up and end up under or overdosing myself. Honestly, on paper it looked kind of impossible, even without a job or family demands. So now I'm back to trying that drug again, even if it's just something I get for only a few years. I could be hit by a truck tomorrow, so maybe it's worth it for a day to be relatively normal. To know what it is like to be rested. I've always been curious.

I want to add here, that chronic sleep deprivation is a big contributor and trigger for my RLS, POTS, ANS dysregulation, IBS, Fibromyalgia, ADHD, chronic inflammation (resulting in dry eye disease), autoimmune hypothyroid, and inability to keep my weight down (I'm over 100 lbs overweight with an extremely slow metabolism)---it is at the bottom of everything that makes my life hard, and it's the only life I've ever known. So actual regular sleep...it could change everything.

I feel hopeful and hopeless in equal parts, but I'm really glad to have found this group, because it feels like I may have met my people at long last. Reading your experiences--wow....so familiar. This is my life.

If you read this far, here's the medal you richly deserve!

Ok, I need some help. I finally took the plunge and am trying the circadia app. I want to love it, but it's not making remotely accurate predictions. It's saying my average sleep is like 5 hours, and awake time is 9 hours. That's very inaccurate (sleep is typically around 9 hours, awake 16.5).

I have imported 7 years of sleep data, half of which was prior to free running. I'm wondering if that is why, but can't seem to find a way to only use a portion of that data (and going through manually deleting years feels unrealistic). But regardless if it predicts using an average of all data, it won't be accurate anyway because things fluctuate over time.

Has anyone had a similar issue?

EDIT: I fixed it. I just wiped the data and only imported the post free running data. Thanks for the help.

EDIT2: I lied. the average sleep indicator is accurate now, but the predictions are still off. The rainbow clock on the first page is predicting sleep after only 9 hours of awake time, and the future sleep times in the prefiction tab are all way off. I inputted an appointment I have on Friday thst I'm confident I'll be awake for, but it's warning me I'll be in the middle of my sleep. 🤦‍♀️

A buddy of mine asked if I was around this past weekend. He works a lot, so he's only free a few weekends a year. I told him I would come over.

Of course, my sleep schedule wasn't going to cooperate. He wanted me over around 11am. But with drive time and getting ready time, I would need to wake up by 8am.

Now, my sleep schedule wasn't totally inverted yet, but I was definitely transitioning from my daylight awake hours to my nighttime awake hours. Maybe I would be able to fall asleep by 2am the night before, I hoped.

I ended up doing worse, falling asleep by 3am. With the alarm at 8, that's 5 hours of sleep, and of course, I was stressed about it so the quality of the 5 hours wasn't great. I really didn't feel happy with that, but I'm already unemployed and mostly socially isolated due to this disorder, so I wasn't going to cancel on my friend.

I'm also a bit of a longer sleeper, needing probably 9 a night to be rested. So 5 hours of choppy interrupted sleep really didn't feel good. And then trying to drive for over an hour during my circadian low, well, it didn't work out.

While on the highway at whatever miles per hour, I started feeling really drowsy. It felt super bad. I tried really hard to fight it. But I started losing control. Even with my eyes wide open, me shaking my head trying to stop the feeling, I started falling asleep. Just for a second at a time. I never closed my eyes. My vision would just go black for a second, and I'd come to with my car drifting into the next lane.

This kept happening over and over. Of course, I'm stupid, so I kept driving. Somehow I wasn't crashing the car. Until I did. Just a little bit though. It was when I reached my exit ramp. I tried to turn off, but forcefully fell asleep at the worst time, and veered the car into the side. I woke up half a second later and snapped it back, so I ended up just scraping the rims of the wheels on the curb looking thing. Windows were down, it sounded like I ripped off the bumper or something, but when I arrived at my friend's house and checked, it was just a nice deep gash in both front and rear rims. But just cosmetic thankfully.

In my defense, I was driving through some pretty bad neighborhoods. If I took an exit and parked, I would have quickly fallen asleep, rudely ditching my buddy, and probably ended up getting woken up getting car jacked at gunpoint. If I stopped on the highway, I'd probably be hit by a mack truck or something. I didn't see any good options. And I couldn't think too well in that state. So I just kept going.

It worked out this time, ending with only scraped rims, a bruised ego, and well, disappointing my dad since it's his car I was driving. But it's like, I really can't do anything normal. If I obey my n24 sleep pattern, this never happens. I sleep well, I feel totally fine, it's just, as you guys know too well, I'm always off schedule for everything.

I can't hold a job. I'd need to drive myself, and I'd end up killing myself if I drove like this every day. I can't go to school, since same issue. I can't schedule anything in advance, so no timing things with friends or appointments. No events. I'm just stuck living at my parent's home, doing nothing all day. There's nothing I can do. I've always been like this, I'm 26 now, this is getting really stale, but I can't think of a way out.

Feels like it's been a while since thats been asked here. let's see some of these random ass careers we've found ourselves in lmao

Hello,
I figured this sub would be most familiar with the glasses, I've been using the glasses to stay entrained and I did manage to do so for probably the first time in my life as long as I can remember

However, I've been using it for around 2 weeks now, and it so happens that I've been feeling strangely irritated -I usually don't feel like that- and annoyed all day, took sometimes to connect the dots since I figured it could be due to my sleep adjustment, then I also remembered I felt that in the past for a short while when I tried using it

I've been using it at highest intensity when I wake up for 20 min and then at mid intensity for 20 min, I didn't want to spend longer time using it with low but today I decided to try the lowest intensity for 1 hour

If that didn't work what would you suggest as replacement? I know staying outside and getting sunlight is good but when I wake up the sun hasn't risen and either way I can't get outside as soon as I wake up

Thank you in advance

I recently took my first automatic driving lesson with my new instructor and I absolutely loved it, and I was awake at the right time for the lesson, so I felt totally alert and ready. My instructor is disabled herself, has decades of experience teaching neurodivergent people how to drive, and is aware of my irregular sleep-wake times, so things are probably going to work out just fine for me anyway.

Because of my instructor's own disabilities, she can only do lessons with me between 9am and 2pm. My next lesson is going to be on July 3rd at 11:30am, but by then I'll probably be waking up in the late afternoon or maybe even later in the evening. I'm not going to have had much sleep. She told me we'll probably just do less intensive things in the lessons where I'm tired.

I just wanted to know how other people with non-24 found or are finding their lessons and what worked or is working best for them. Ideally, I'd like to know about the experiences of people in the UK, as passing your driving test here is extremely difficult and the market for instructors, lessons and tests is insanely competitive and still backed up because of Covid.

Hey everyone! Im posting here because I need advice regarding my college’s accommodations for my sleep disorder, and whether or not they are reasonable.

For some context, I applied to my local community college with the goal of transferring to another college. The problem is with the accommodations that they have come up with. In the meeting with their disability councilor, they told me that due to my sleep disorder, and their attendance policy, stating that I can only miss3 days in a class before im dropped out of the course. Their compromise is that i can only take online courses. While this seems fine enough on paper, due to the fact that I am wanting to get a physics degree, this severely limits the majors that i can obtain, due to the prerequisite requirements for said major not being online. My question is; does this constitute as “fair and equal access to courses”? From my own research they should be able to alter their attendance policy in regard to the disability.

TLDR My college is only letting me take online courses, severely limiting the degrees that i can take, and I am wondering if this falls under “reasonable accommodations”

Thanks for any advice!