A recent article in the New York Times about the lengths some people are going in hopes of getting a good night’s sleep reminded me of the beginning of my journey to find sleep.
At the height of my depression, anxiety, and panic disorder, it was 2012 and I’d finally found a doctor at one of the most prestigious hospital systems in the world. It had been two years dealing with the hospital in my hometown, who provided nothing but several misdiagnoses, that I found myself in a place where I was being listened to and treated like a human being who needed sleep more than anything.
My new doctor wanted to overhaul everything, so I was going to have to be inpatient while he tried different medications, treatments, and a sleep study to try to understand and treat me for something as illusive as sleep can be. I was never the depressed person sleeping all day, I was the opposite.
At the time, I was on Ambien after having taken every sleeping medication on the market. I had a sleep study done without the Ambien and never fell asleep. Not a wink. In the sleep study the night after, I took my Ambien, fell asleep for a few hours, and was up at dawn. The results showed that I’d been in a light sleep, no REM sleep, and no deep sleep. The doctor said with these results I shouldn’t be in the car driving during the day.
Since I’d taken everything on the market prescribed for sleep, we had to go off-label. The doctor mentioned Seroquel, an antipsychotic typically prescribed to bipolar patients and people with epilepsy. He went on to tell me that Seroquel was a heavy hitter in terms of sedation and that my dose would most likely be higher than others who take it for just sleep, which is typically 25mg. And, of course, one of the side effects was weight gain, big time. He urged me to think about it long and hard.
Seroquel is nearly impossible to wean off, and the weight gain is real. I said I didn’t care, sign me up, let’s get some serious sleep.
For about 10 days as I was sorting out my depression and anxiety meds, I was climbing up the dosage ladder with Seroquel. By the time I reached my proper dosage, I was taking 600mg, which is not typical for sleep at all. But another sleep study showed that it was what I needed for sleep.
In the years since then, I stayed at 600mgs, but over time as my body adjusted to that amount, I’ve had to add Ambien back, 40mgs of Melatonin, and some Trazodone, if needed. This cocktail would knock out a horse.
The New York Times article talks about people who become obsessed with their sleep. They tape their mouth’s shut, use nostril expanders, mouth guards to move their jaws out, and wearable sleep trackers to get a good night’s sleep. Doctors diagnose these individuals as having “orthosomnia.” They may also take “sleepy girl mocktails” and spray their feet with magnesium.
In 2023, when I was sleeping in my daughter’s room due to a broken air conditioner, she told me that I snored all night. I thought that maybe that was why my sleep was out of control again. If I could cure the snoring, I would sleep through the night, I prayed. I downloaded an app that recorded my sleeping and found that I was indeed snoring and that maybe that was causing my sleep disruptions. So I became obsessed with finding something that could end the snoring. I tried mouth tape, which did nothing, dilated my nostrils (no luck), a chin strap (headgear for nerds), and a mouth guard that pulled my lower jaw forward (That did work, but every morning when I took it out, my jaw was in agony and I eventually developed TMJ. So in the garbage went the mouth guard.)
The New York Times says that people who go to these lengths to get sleep are “sleepmaxxers.” And I’m one of them. Milena Pavlova, the medical director at the Sleep Testing Center at Brigham and Women’s Faulkner Hospital in Boston told the New York Times that “Sleep is a passive process. It is to be protected, not forced–or maximized.”
This summer of 2024 when my dog was diagnosed with dementia, her evening pacing around forced me to want to look into my sleep again. I bought an Oura ring and discovered that I’m once again awake in bed more than asleep in bed. My panic attacks now mostly come at night, and I wake up in the morning a complete mess. I decided that I would attempt to get off Seroquel, since the medication is just not working well for me. I want to see if I can land on something made for sleep that won’t put 75 pounds on me. The titration process has been brutal. My Oura tells me that I’m waking up all night, but I as I decrease the Seroquel, I’m actually falling asleep faster.
I’m not obsessed with my Oura, hoping for that elusive 85% sleep score that all Oura users are trying to get. I’m more interested in seeing my patterns of sleep throughout the night. I import all my Oura sleep information to a Cognitive Behavioral Therapy (CBT) app that has helped me immensely. I am currently down to 225mgs of Seroquel, 10mgs of Melatonin, and 100mgs of Trazodone. It’s still quite a bit of medication, but the only issue–if it even is one–I’m having is perhaps sleeping a restful 10 hours a night, instead of the typical 7-8 hours. Ten hours a night works out okay for me, especially since it allows me some deep and REM sleep, which I was missing for years.
My Oura is on break while I focus on the CBT app for sleep and its daily sleep lessons. But I know that I will always need something medicinal to help me sleep. And as long as it helps provide the sleep that my mental wellbeing demands, I won’t be obsessed, just mindful of the parts that comprise my mental health and which need to be protected.
