Searching for Sleep

Ever since I stopped taking Lexapro, I’ve had chronic sleep maintenance insomnia. Nothing I’ve done over the years has helped alleviate the problem, from medications, to meditation, to CBT-I administered by a sleep psychologist. I have a veritable pharmacy of sleep meds in my closet from past attempts.

A Little Backstory

A few years ago, I’d heard of a new type of sleep medication that doesn’t work through the GABA system like most of the others. GABAergics tend to be physically addictive, whether they be benzodiazepines, or the more recent and less habit-forming “Z-drugs” used for sleep such as Ambien and Lunesta. It’s not a repurposed depression drug, or some kind of melatonin receptor agonist either. Instead, these new medications focus on antagonizing orexin receptors.

Researchers studying narcolepsy noticed that these patients had hypocretin deficiencies. Given this newly discovered association with the sleep/wake system in the brain, it was natural to assume an orexin inhibitor could work as an anti-insomnia drug. Naturally, I was intrigued, and I kept waiting for the FDA to approve them in the USA.

The first of these to reach the general populace was Belsomra, approved by the FDA in 2014. Reviews for this were not encouraging, and being the first ever drug in a category, I followed my inner software engineer to never use the first version of a new release. So I waited. The next drug meant to address orexin was Dayvigo, and it was approved in 2019. The reviews for this were hit and miss, with a lot of people reporting somnolence as an undesirable (really?) side effect. The only other side-effect seemed to be occasional sleep paralysis, but I have a lot of experience with that anyway over the years.

I’d lost hope and stopped trying new drugs several years ago, so I didn’t even know Dayvigo had been approved and was now available. A chance encounter on a forum clued me in, so I went to my doctor to get a prescription. It took weeks to acquire the damn thing. Walgreens had to order it because there wasn’t any in stock. Then insurance denied it, so they canceled filling the prescription. I looked it up in my insurance, and sure enough, it’s not covered at all. With a retail price of $349, that’s a tall order, but one I was willing to pay after endless years of 5-hour nights. I managed to eventually sort it out, and since I wasn’t even sure it would work, got a partially-filled prescription of seven pills simply to verify its purported effectiveness.

Night 1

So with some trepidation on Thursday, I took one 5mg pill right before bed. I skipped my usual 1mg sublingual melatonin so I could evaluate how well Dayvigo worked on its own. If orexin receptors really were the sleep/wake switch in the brain, I expected to eventually feel a strong urge to sleep. When it finally came, I took off my glasses to lay down and waited for unconsciousness to claim me. And I kept waiting while nothing happened.

Well, not quite nothing. I started to feel very, very cold. Extremely cold. I had to pull up a large plush blanket I keep on the bed for nights when the back of the house is perhaps a bit chillier than it should be. That addressed, I still couldn’t sleep. I felt overwhelmingly groggy, but my brain remained stubbornly online as per usual. But I needed to finish the experiment to fully evaluate Dayvigo, so I waited. Full effectiveness is supposed to arrive within 1-3 hours, so maybe I just needed to be patient.

I eventually fell asleep. One of the reasons I wanted to block orexin is due to my nightly trip to the bathroom. This happens anywhere from 3:30 to 5am, and if I can’t fall asleep within 30 minutes after this, my night is done, and I give up and read in the living room until I would normally wake up. Orexin inhibitors are supposed to address sleep maintenance insomnia, and that was what I was really testing. So when I woke up at around 3am and then fell promptly back to sleep less than 20 minutes later, I figured it had worked as advertised.

Only it hadn’t. I woke up again at 5:20am, and this time the result was permanent. Despite a 19-hour half-life, I had somehow metabolized it into oblivion in less than 7. Defeated, I went to read in the living room. But I still had further tests to run before truly giving up on the substance.

Night 2

Dayvigo reaches maximum serum concentration 1-3 hours after ingestion, so my new plan was to take it an hour before bed rather than right at bedtime. Secondly, since I really wanted it so I could stay asleep, I’d use my 1mg sublingual melatonin as I always have, given I have a melatonin deficiency. Perhaps stopping the signal to stay awake still requires melatonin to cross the final bridge. It seemed like a good plan, so into execution it went. Friday became night 2.

After about 20 minutes of reading in bed, a wave of drowsiness prompted me to stop and try to sleep. Maybe 20-30 minutes later, I noticed I still wasn’t asleep, and started getting extremely cold. This wasn’t a replay of Thursday however, much to my burgeoning horror. The chill crept deeper until I started to shiver while still in bed and under a blanket. The Shivers became so violent I briefly considered retrieving my fleece hoodie in another room, but wasn’t sure I could walk that far, as the shivers had advanced to uncontrollable full-body shuddering.

Instead, I frantically pulled up the plush blanket once again and put my head beneath everything to capture my breath and conserve heat. Miraculously once the shuddering and shivering subsided, I eventually fell into a broken and unfulfilling rest. I did wake up at 5:30am or so, and while my fitbit says I went back to sleep after this, it didn’t feel like I did. When I finally woke up for good at 8:15am, I was still groggy and felt generally terrible.

Moving On

Another failure. The worst part is the weird restlessness that seems to strike right as the drug kicks in. The wave of sleepiness is profound and overpowering. It’s like fighting highway hypnosis after 24-hours of sleep deprivation. While I personally welcomed that oncoming train, my brain decidedly did not.

By unceremoniously forcing it to shut down, I’d triggered some kind of fight-or-flight response and it fought back with adrenaline or anything else at its disposal. Right after the worst of the shuddering, I had to run to the bathroom to re-empty my bladder even though I had done so right before getting into bed. Anyone who’s had a panic attack knows this response as a physiological manifestation of the body conserving heat at its core and dumping water as part of vasoconstriction.

In theory, I could use that knowledge to my advantage. I could eventually get my brain to associate that onslaught of drowsiness with a reward through exposure therapy commonly used for breaking anxiety or panic responses. That seems tricky though, given the rewarding association is supposed to be restful sleep, which I’ve craved for years now. Perhaps I just need to keep at it until things finally settle into place.

I don’t want to risk it, though. After two nights of extremely uncomfortable sleep following a panic attack, I just want to avoid it now. Breaking that association will be extremely difficult now that it’s been partially established. My amygdala is nothing if not overzealous in that regard. How ironic is it that Dayvigo may work too well for me. So long as I have sufficient melatonin to establish sleep once my brain is deactivated, my sleep data is hard to dispute. Despite all the difficulties, my fitbit says I got nearly an hour and a half of deep sleep, which is unheard of for me. Apparently that stuff hits hard enough to terrify my brain.

So I’ll keep the remaining five pills and try again some time later to see if this experience was some kind of fluke, but my hopes are understandably diminished. Maybe I’ll get lucky and exposure therapy will solve my problem, but then I’ll need to cough up over $300 a month for the pleasure. Despite the mildly traumatizing false start, I’m still willing. That’s what years of sleep deprivation will do to you.

Until Tomorrow