Sleep, Interrupted Part 1 (How the Insomnia Started and What Didn’t Help)
It has come to my attention that I’ve managed to create the false impression that I’m able to juggle multiple projects at once. “You did all this stuff to your house, make stuff, started a Locals community, started a podcast, and have a blog!” Allow me to disabuse you of the inaccurate picture I’ve inadvertently painted of myself. I jump into one project at a time while the previous project withers from neglect. I haven’t made anything in forever (sure, there was a gnarly health situation I had to get through and that definitely impacted my ability to focus, but still), almost all the major projects I did around the house have been done for five years, and the bulk of posts in this blog are re-runs from previous blogs I’ve started and stopped. The post below is an example. It’s part of a series I published in March 2019 in an attempt to pass on some of the things I learned during a multi-year battle with insomnia.
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Lately, several friends have posted updates about not sleeping well, which breaks my heart. As someone who struggled almost nightly with sleep for two years, I know how much of a toll that takes on a person’s mental and physical well-being. So even though it has nothing to do with the usual content of this blog, I want to pass along everything that has helped me cope with and (for the most part) overcome insomnia.
A little background: in December 2016, my wonderful father-in-law was diagnosed with stage 4 pancreatic cancer and passed away in February 2017. The weeks in between were horrific – don’t get me wrong, the grief is still gut-wrenchingly painful, but the waiting . . . the uncertainty . . . driving the 3 hours to Austin or having to be in a state of constant readiness to make the trip at a moment’s notice . . . never knowing which hug would be the last, but knowing it was coming . . . that was the worst. And having to watch my amazing husband, who takes care of me so selflessly, suffer through that and not being able to make his pain go away . . . you get the idea. And then there was a house full of emotional female family members (myself included) and personality conflicts that arise even in the best of times to top it all off. After the funeral, we were trying to get back into somewhat of a routine, when it happened. As I fell asleep one night, it felt like I stopped breathing, and this went on for about 4 hours – I would almost fall asleep, only to be jerked awake by that struggling-to-breathe-feeling. This was rather unsettling, but since that had happened a few other times in my life, usually under times of great stress, I decided not to worry about it.
I mentioned it to several people and they all said it must be sleep apnea. That didn’t sound right to me because I have absolutely none of the risk factors. However, one of my family members is a medical professional, has a similar build, and has sleep apnea and she thought that’s what was going on with me. I responded that it only happened when I was on PMS (sorry about the TMI), and she said it probably happened all the time, but I only noticed when I was on PMS because, sorry ladies, along with all the other lovely symptoms, it also messes with our sleep. I made an appointment with a sleep specialist and started researching sleep apnea and the treatment thereof. Huge mistake. All of the horror stories sent my anxiety off the charts.
The weird part is, I didn’t feel anxious during the day, I felt curious and engaged with what I was learning, but apparently my body registered a major threat because it started letting me know that something was horribly wrong every time I tried to sleep. It kept getting more creative in its attempts to get my attention. At first, it was only the struggling-to-breathe feeling, then it would wake me up with a sharp inhalation through the nose that threw my head backward on the pillow, then a gasp, then it would give me a sensation like someone had just jump-started my heart with a defibrillator or my diaphragm had just spasmed. I would wake up sweating with my heart racing. This turned the process of falling asleep into torture and it was hard to relax enough to fall asleep not knowing if and when one of these things would happen. Sleepiness turned into an anxiety trigger in itself.
I finally had my appointment with the sleep specialist and had a sleep study done after which, it took 3 weeks to get the results. During that time, I continued to look into what could be going on, but all the symptoms pointed to sleep apnea. However, there was not a single apnea found on the results of my sleep study. I did have several RERAs (respiratory effort related arousals), but nothing that crossed the threshold for requiring treatment (great, there was something disturbing my sleep, but they couldn’t do anything about it). The doctor told me there was nothing to treat me for and he couldn’t explain what was happening to me or why. All he could say was that it must be anxiety, which didn’t make sense to me at the time – anxiety was something in your head, right? And I didn’t feel anxious, just exhausted and super curious about what was happening to me.
I had an appointment with another sleep specialist and he said that there might be a reason to treat me for Upper Airway Resistance Syndrome (which is diagnosed when someone has over 15 RERAs per hour), but that he would rather treat me for anxiety. In other words, put me on a benzo. I was really resistant to that because, if it really was just anxiety, that should be fixable through cognitive behavioral therapy or some other non-pharmaceutical intervention. I caved to the pressure from him and some family members to go on clonazepam.
If someone is on a benzodiazepine and getting acceptable results, I’m not saying for one second that they made the wrong choice or that they’re in any way inferior to someone who treats their anxiety through a different means. I am not of a fan of taking them to help with sleep for the following reasons:
They are known to decrease deep sleep and REM, so the quality of your sleep is lower, even if you’re getting a tiny bit more.
They impair cognitive ability and I need every ounce of functioning brain I can get. I really didn’t like how hazy I felt the whole time I was on them, even though I was getting slightly more sleep.
They can cause dependence, tolerance, and withdrawal (I feel like that’s widely known, but if you need a source, let me know). They are not a sustainable solution for me and I wanted to figure out how to get my sleep back on track for keeps ASAP.
After six weeks on clonazepam, I went back to the doctor who prescribed it and asked about getting off of it. He didn’t want to take me off yet, but when I pressed the issue, he told me an aggressive tapering schedule would be to reduce usage by a certain percentage (I can’t remember how much) every two weeks. He wasn’t any more supportive than that, so I figured it out on my own using the percentage and time frame he gave me – it would take 14 weeks. 14 WEEKS. I was irritated, but determined.
While I weaned myself off the meds, I started to recognize patterns: every diaphragm spasm was immediately preceded by a twitch somewhere else in my body – even if it was just a finger; if I had any kind of interpersonal conflict that day, the twitching was worse. And I finally found an article saying that in 7% of the population, a hypnic jerk can be accompanied by the feeling of breath cessation. FINALLY!!! So now I have a name for all of these instances: the twitchies. It’s much less disturbing when I call them that. When any of the disturbances occur, I can tell myself, “It’s just the twitchies. It’s part of my body shutting down to sleep. If I stay calm, I’ll fall asleep at some point.” That doesn’t always work, but it’s better than freaking out because I feel like I’ve stopped breathing.
After weaning myself off the meds, I tried several home remedies to help with sleep.
Passion flower: this works incredibly well for me, unfortunately, I’m also allergic and my nasal passages swell up making it actually more difficult to breathe. Bummer.
Chamomile: same story as passion flower, effective but with side effects that negate it’s usefulness.
California poppy: again, helpful, but I’m allergic.
Lemon Balm: this one is super helpful and I’m actually not allergic! I just haven’t used it much because I prefer to focus on calming down mentally, rather than relying on a substance.
Lavender essential oil: it’s the go to for sleep, right? I haven’t tried it since I’ve been sleeping better, and I’m curious to see if it affects the quality of my sleep, but it didn’t help at the time.
Vetiver essential oil: OMG, I love the way this stuff smells!!!!!! It’s strong at first, but it mellows beautifully. It helps more than the lavender.
Essentials oils that helped marginally, but didn’t do the trick:
Cedarwood
Tangerine
Bergamot
Ylang Ylang (my cat loves this stuff, too, btw)
Frankincense
Clove
Up next, the turning point in my insomnia saga. Stay tuned!