It was supposed to knock me out right away. Zalepon. Sonata. Yet as I laid down and put on my standby — a John Mulaney stand-up special — I realized I’d stayed awake through the entire thing. Tired, exhausted really. But not able to sleep. I think I’d stayed awake through the half-life.
It’s a recurrent thing: I don’t sleep, at least not without heavy sedation. And then I wake up in the middle of the night and feel too awake, too alert. I need something else to get back to sleep. I put something on again, try to get back to sleep. Sometimes it’s 20 minutes. Sometimes 30. Sometimes I find myself there an hour later.
In my brief foray into TMS, my psychiatrist sent a note to the technician: trouble with sleep.
She’s tried throwing things at the problem my therapist hadn’t heard of in decades. Loxapine. It’s usually used in schizophrenic patients to give the dead eye glare. I sleep on it, but there’s no getting to sleep. Once I’m asleep on it, there’s no staying asleep. I wake up multiple times but all it does is pull me back to sleep. It’s sleep, but it’s not restful. It’s a druggy haze. An entire day lost.
And there’s nothing in between.
Of the things she lists off in medication we could try, it’s all scary sounding medication with heavy side effects. I can’t be catatonic. I have to be effective at my job — or as effective as I can be at a place I sometimes feel in over my head. Or often. Distractible. Not feeling up to the levels they want. I can’t sleep the 16 toss and turn hours Loxapine will give me.
Sometimes other medications have given me a little more tiredness — I needed less to get to sleep but not nothing. But they came at the expense of physical wellness. The Seroquel that ruined an already failing relationship, barely holding on, causing such a bad bedroom issue that it put a nail in that coffin.
It’s always been like this. As a child, I wasn’t tired at night. I would take out a flashlight and read under the covers. Restless. Not able to sleep. Sometime into junior high and high school it got worse — school nights up til 3 a.m., barely able to get up from four hours of sleep, tired throughout the day. Maybe I’d guzzle a Diet Coke to get through part of my day. Shitty grades. Shitty attention span. Constantly yawning.
College, a crap shoot of sleep. After graduation, up until 4 a.m. The TV gets less interesting the later you go. The days of midnight movies — crass and weird, often edited for the USA Network — long gone. Just enough sleep to get to a job I had to be at by noon a couple suburbs over from my home in Philadelphia. Tired.
Once, around 2015, I had an Ambien prescription, a trusty drug that’s supposed to knock you right out. Yet if your brain won’t go to sleep, it shuts down some very bizarre areas of itself, puts you in a very different mode. You’re not supposed to remember it, but I often did. I was listening to Incubus and The Deftones, bands I hadn’t liked since high school. Yet they were the only thing I could listen to, aside from a weird, cheap shortwave radio I bought off eBay, trying to find far off stations playing something interesting. Lord knows what I considered interesting on Ambien. Maybe I just like the sound a shortwave radio makes as you tune it. Finding stations was rare, but I was inside an old building where plenty of things were hard to get, like cell reception.
I had taken Ambien in college too. I’d say I knew it was kicking in when I began to see tendrils coming out of my ceiling light — I called it the transluscent octopus. Sometimes I’d be writing or drawing and you could see, midway through, where the medication kicked in, words trailing off, drawings sloping as if the subject I was drawing was melting. Please remember when I share these that they seem like the ramblings of someone profoundly ill. But my brain was shutting down and something weirder was taking over. A sort of id that I suppose could be considered my waking dream brain — as if you could capture the twilight that sleep paralysis lives in. Just not paralyzed. (Sleep paralysis, night terrors, I have it all.)
In effect, I was awake, but not. I’m not the world’s greatest artist, but witness the difference between, perhaps, just a few minutes into Ambien (the weird imagery is there) …
And after …
I can’t remember where I was on the treatment spectrum at this time. I get the feeling it was before I was diagnosed with bipolar disorder. Back when it was … every anxiety issue and clinical depression, throwing every drug at the problem before I told my psychiatrist what a “panic attack” felt like, twitching down the streets of Lincoln at night, feeling like a radio was buzzing in my head, walking a bike trail at 11:45 p.m. and maybe it was dangerous but I was so agitated that maybe I seemed like the danger anyway.
Eventually I got on Lamictal. The mania got quieter — I was left with just depression. And the problems with sleep.
Those two have been the hardest to treat.
The problems have gotten worse, not better, in the intervening years. In both respects of mood and sleep. For a time, I had some clarity with a drug called Latuda, not really feeling better, per se — my life, admittedly, sucked at the time — but able to see through, organize my thoughts, come up with solutions, including the solution that (quite necessarily) blew up my life.
And I was more tired on it. Just a little more. A nudge. But a nudge with the side effects of psychiatric drugs. Weight gain. A little bit too much sleep — but maybe a manageable amount. And still, too, it had a little bit of nudge from Xanax or sometimes Benadryl to put me over the top.
Then my insurance company didn’t cover it, and all the sample packets in the world couldn’t cover what I needed, all the quartering wasn’t enough to make it last. I had a sense of mourning from Latuda being out of my life, and the rollercoaster of drugs gave me cognitive problems as I was trying to finish a book — one, frankly, that I find hard to talk about because I was dragging myself through life at that point and am not sure what I turned in sometimes, and I can’t open the pages of it to find out. I found a repetitive passage. Lord knows what else is lurking there. Maybe next go, I’ll be in a stronger place to put together a better edited, more coherent book. I haven’t felt a pride in my work in some time.
People say exercise can help you sleep better. During this period I was going to a gym daily and changing the way I ate and my weight wasn’t budging and my sleep wasn’t budging. Sometimes, the sleep was worse, even if I’d exercised hours earlier, both cardio and weights.
When quarantine began, my sleep problems became more pronounced than ever. I’d talk to a friend until they drifted to sleep and then I’d be up another couple hours. Sometimes I’d take a few Benadryl, wake up, have to try to get back to sleep. Drag myself out to the couch, try to get through the workday with something in the background. By night, still exhausted … still not sleeping. Sometimes a little bit of herbal remedy would help, but sometimes it was a mild balm.
Change your sleep hygiene. Go to sleep distraction free. Yet if I don’t have something — anything — on I lay in eerie silence and still don’t get the sleep I want or need.
Lunesta wasn’t enough so I tried Sonata. Sonata wasn’t enough last night so I needed an Ativan and a Benadryl. It still wasn’t working — the exact things that should have been.
I don’t sleep all night either. I get up. Have to pee. Have to figure out a way to get back to sleep. Trying to treat that hasn’t helped either.
I can remember the last time I fell asleep on my own and — importantly, too — stayed asleep all night. Went on a whale cruise. Saw no whales. Saw a lot of dolphins. The sea rocked me all day. Laid down on top of the covers for “just a second,” fully clothed. Woke up the next morning to the light hitting my face from the window with the blinds up.
This was six years ago. It was so vivid and momentous that it’s still burned into my brain. I had slept. Unaided. All night.
I look forward to, at some point, a complete night of sleep. But it feels like it will never happen. Even on the strongest medicine I don’t fall asleep easily. I don’t stay asleep all night. All I do is cumulatively sleep more. I don’t want 12 hours of sleep. I want eight, like a normal person. I’d settle for six consecutive.
I don’t think I’ll get them.
Mental health
I have not been doing terribly well this week, partly out of the loss of Tiger Friend, partly out of other life factors, personal and professional. I had a resurgence in anxiety that had briefly left me. But only briefly. It’s always there but maybe it hadn’t been hovering over me a little bit, for a short spell. (This, too, involved an … unusual method to get there that I shouldn’t get into on a public newsletter. A legal grey area.)
I drank more than I meant to. At least it gave me what it took to get some of Tiger Friend’s belongings out of the house. I cranked up the Songs: Ohia. I went through some weird self-loathing, which, probably the drinking. Sometimes I just go darker. (I cut it off for myself though.)
I realized, at least, that I needed a change, because after missing a week of therapy because of putting my cat to sleep, I didn’t want to tell my therapist anything, didn’t feel like I’d get told anything useful, didn’t want to talk to anyone but my closest friends. That’s not how a therapist relationship should be.
So I sought out a new one. I start Wednesday night. At least on the profile of their clinic, they can deal with trauma and some other issues I’ve been dealing with, instead of always trying to steer to lighter talk or present problems. You shouldn’t dwell on the past always, but sometimes you need to close certain parts of the book or let the wounds, at the least, scab over so you can put the ointment on them.
I may stay with my group therapy. I’m still deciding. I got an unusual letter from my insurance company that the practice I was going to may go out of network by September. So maybe I needed to change everything up anyway.
The Sonata is the only new change in medication. 400 mg lamotrigine. 1-2 mg Sonata. 1000 mg metformin. 0.5 mg Ativan. Still no sleep.
Science
Radio astronomers may have found something never-before-seen — circular, strange and, at least in radio, bright. They’re still not sure what they are, and there are only four of them to go on, and observatory artifacts can’t be ruled out. We’re in the “What are these???” phase, and it may cause a look back at old observations to see if they crop up again.
Spooky space mysteries. Gotta love it.
Links
What Happens When You’re Disabled but Nobody Can Tell (NYTimes) — Sometimes I waver on job applications and HR forms whether I should really mark myself as having a disability because, quite literally, it’s all in my head. It’s not physical. Yet I have to remember the way it derails my life. It’s there. It’s real. It’s just not physical.
The Whole Earth on CD-ROM in HyperCard in Your Browser (Archive.org) — I never knew there was a late 80s CD-ROM of the Whole Earth Catalog, but now I can dive in with the “Access to tools” of 30+ years ago.
This letter, an invitation to a funeral from a woman to Arizona Gov. Doug Ducey, might break you (Twitter) — We’re back to where we once were.
And on a lighter note, here’s a perfectly timed video of a rocket launch from an old James Burke presentation. Scicomm at its best.