I’ve been reading this fascinating book called “Sleepyhead” that this guy with narcolepsy made where he talks in depth about all the various sleep disorders and his own disorder and dear lord I really am just all kinds of messed up. I really don’t get it. Monitoring my sleep with my Fitbit, it’s very fractured, and on my official sleep study you can see I had a TON of mini awakenings/stirrings that I’m not aware of, well above the normal range.
Furthermore there seems to be a pattern, wherein the awakenings all happen right before, or otherwise interrupting my REM sleep. All of them. And guess what? My amounts of deep and light sleep? Totally normal, at healthy level. My natural REM? Less than half the healthy level consistently, even with a good 8, 9 hours sleep.
Not only do I have this fractured sleep, but I can’t seem to fall asleep at a holy hour. For literally my entire childhood/adolescence I thought I struggled with severe insomnia-I often tossed & turned for hours-until I got to college and could make my own schedule and realized if I simply went to bed when I was tired, it took me all of 10 mins or less to fall asleep. I could pass out as soon as my head hit the pillow. The issue? My brain can never seem to make up its mind WHEN it wants to get tired. I don’t have a programmed “bed time” it seems. The average bed time for most people is I believe like 10 pm. Then you have early birds who go to bed 1-2 hours early, and night owls who go to bed 1-2 hours later.
Going to sleep at any time before 1 am is almost impossible for me, like asking someone to turn in for the night at 4 pm. However, just because I can go to sleep by 1 am one night, doesn’t mean I’ll be tired at 1 am the next night. The next night, I won’t be tired until 2 am. The next night I won’t be tired until 3 am. And then 4 am. The latest I ever let it go was like 6 am and I was sleeping in until like 3 pm the next day.
It’s the same way for me and wake up times. Normally a person will wake up between 6-9 hours after going to sleep. Any time before 10 am I will not wake up naturally at and is like crack of dawn for me. EVEN if I went to bed at 11 pm the night before, giving me OVER 12 hours of sleep, I have trouble waking before 10 am. So 1 am and 10 am seem to be my base limits. The closest I can get to normal. But again that doesn’t mean I normally, comfortably wake up at 10 am every day! Because my night time bed time shifts, so does my wake up time! I sleep at 1 am, wake up at 10 then I sleep at 2 am wake up at 11, sleep at 3 am, wake up at 12, etc. There is NO ROUTINE or stability without me literally forcing it with medication. Even if I set a routine bed time and wake up time for myself, I will end up developing insomnia because I suddenly will not be tired at the initial bed time anymore. It’s ridiculous. So for example, if I set my bed time at 1 am, after only a night or so at that I will find it increasingly harder to fall asleep at 1 am and will just toss and turn. That’s why when doctors ask what time I go to bed/wake up normally it’s so hard for me to answer!!
And THEN-yes it doesn’t even end there-THEN after sleeping solidly for it doesn’t matter how long, lately for example I get 11 hours of sleep nightly, after only about an hour or 2 of being awake, I am EXTREMELY SLEEPY out of nowhere. It’s like this massive pressure to sleep that leaves me totally dysfunctional. Luckily, even a brief nap can help relieve the sleepiness, but it quickly returns. It’s like my brain doesn’t understand that it’s supposed to be awake during daylight hours. At all. And just shuts down all the faculties responsible for keeping me awake and aware.
Around 10 PM is when the sleep attacks and sedation start lifting and I am actually awake. You’d think I’d just wait until it got to be that time to be productive but guess what-not possible in a diurnal world. I’ll often have a lot going on during the day, and by the time it’s 10 pm, I’m tired. I’m not sleepy but I’m tired, burnt out. In fact I never experience the sleepiness I feel during the day at night, not even at my bedtime, bed time is just like well I guess I’m tired enough to hit the hay now. Like my frazzled brain just giving out. Then the weird cycle repeats.
Knowing all this I have NO idea what type of sleep disorder I’d actually fit under because it seems like I’m a mix of several. Actually a new one I learned about that piqued my interest is “non 24”, where a person does not have a typical 24 hour circadian rhythm due to brain systems not functioning properly, and the person tends to go to sleep and wake up at a different time every day if allowed, and experiences exhaustion during the day similar to those with narcolepsy do. But I didn’t see anything about those with non 24 having fractured sleep or less REM, and narcolepsy does have a characteristic of it. So I have absolutely no idea.
My official diagnosis currently is narcolepsy without cataplexy and delayed sleep phase disorder, but with delayed sleep phase disorder you have a normal bed time and wake up time, it’s just way later than normal. So not only do I go to sleep and wake up way later than normal, but I don’t have a regular set time at which I do so. What the hell. Seriously. Who designed the sleep architecture of my brain.
As for medications, I am resistant to almost all sleep medications including xyrem-GHB. (My friends joke that at least this means I can’t be roofied) Most have no effect on me at all, others I quickly gain tolerance to, or they just aren’t strong enough to take me out before my brain wants to sleep. Seroquel so far has been the only exception, and guess what I have noticed about seroquel? It brings my REM up to a healthy percentage. However it does nothing to fix my sleep attacks the next day, even though it gives me like 11 hours of sleep regularly, though I do wake up naturally on it, something that doesn’t happen off, I never wake up feeling rested and like I slept enough naturally. And modafinil, wow that changed my life. Preventing the sleep attacks from happening and giving me my motivation and focus back that I’d lost for years. But it’s duration is SO SHORT I need to take like 3 PILLS to be awake the entire day, (not even hyper!! Just normal energy level awake!!) only problem is taking that much gives me actual palpitations and other heart problems like tachycardia and pain. In fact, I’ve noticed on taking 3 pills a day, my body feels like it’s exhausted. Even if I had a full night’s sleep before. Almost like it can’t handle being awake for 9 hours straight. It’s awful though because each pill ONLY staves off the sleep for a few hours. So I take one at 11 am, at 2 pm I need another. If I take another at 4 pm, I get the previously mentioned concerning side effects. So basically my day ends at 4 pm and I’m in a groggy apathetic haze until my brain kicks on at 10 pm.
Absolutely baffling. All of it is baffling. And you know I badly want to be able to discuss all this in detail with a doctor and to have that professional to puzzle it out with but to be frank doctors don’t care. They don’t have the time. They just cherrypick what details fit the nicest into a certain diagnosis, slap you with it and send you home with meds that may not even be the best course of treatment. They don’t care about your individual variations or what that may mean about the source and treatment of your disorder. It’s extremely frustrating.
Ok my essay is over.
summary: My circadian rhythm is bonkers. My sleep structure is bonkers. I’m frustrated because I feel I have all these specific variations in my illness that could maybe lead to a more specific treatment or diagnosis but doctors don’t give a crap about individual variation and don’t want to listen to it and just listen to what they want to hear to give you the easiest and most clear cut diagnosis, even if it is not the most helpful to you. I’m so tired of dealing with my completely erratic sleep.