"To Sleep, Perchance to Dream..." My Insomnia Story (Struggle)

Hamlet may have wanted permanent sleep—I’d be satisfied with six or seven solid hours! When I was young, during my teenage years, I often wandered around our house in the middle of the night. Sometimes, I’d meet my father reading in his red-brocade chair, an heirloom from his mother. We shared these awakenings, nodding or whispering to each other before we retreated to our respective beds to try, once again, to sleep. There was never any warning when I might have disrupted sleep: Did I have an important test the next day? Did I have to wake early to catch a flight and not trust my alarm clock? Had I had a bad day, misunderstanding a friend’s comment, feeling awkward about my body, or being anxious about a project? No matter the cause, falling asleep, staying asleep, and waking at a reasonable hour eluded me.

Over the ensuing years, my sleeping (or non-sleeping) pattern remained inconsistent but gradually worsened. I didn’t discuss it with any health providers. I didn’t take any medications for it. I didn’t try meditation or cognitive behavior therapies. I hid the panic of not being able to fall asleep for five or ten nights in a row. I endured the whole-body tiredness and the foggy brain of those nights without good sleep. I’d be exhausted but still not able to fall asleep or stay asleep. I cried, quietly, some nights, wondering why I was singled out for those endless nights. I had too much to do, two sons, an intense career, other commitments. I didn’t have time to lose sleep, clearly affecting my ability to function well and likely, based on current studies, impairing my overall health.

We understand much better, today, why good sleep matters, the benefits of sleep, and the consequences of inadequate sleep. Sleep institutes abound around the country; longitudinal studies of sleep habits are on-going; the links between chronic diseases and poor sleep, the benefits of good sleep, and the inability of the body to restore both physiologically and psychologically without sufficient sleep are becoming better understood; adequate sleep is important, no matter what our age. It’s reported that approximately 40% of American adults experience either chronic or short-term insomnia.

“In the short term, a lack of adequate sleep can affect judgment, mood, ability to learn and retain information, and may increase the risk of serious accidents and injury. In the long term, chronic sleep deprivation may lead to a host of health problems including obesity, diabetes, cardiovascular disease, and even early mortality.” http://healthysleep.med.harvard.edu/healthy/

Almost twenty-five years ago, I was at one of my lowest lows, working twelve-hour days, raising two boys ages four and eleven, my husband traveling for work almost every week. I could not sleep. I wandered the house. I took hour-long hot showers at two in the morning. I drank warm milk. I kept a note pad by my bed to write down all those errant thoughts swirling through my mind, keeping me awake and anxious. Usually early afternoons, I’d slip away from work and drive my car to a shady spot (it was a HOT summer) and take a nap, maybe forty-five minutes, enough to help me through the rest of the day. But nothing allowed me a decent night’s sleep. in the middle of a three-week insomnia bout, I scheduled an emergency visit with my family practitioner. Alas (oh, Shakespeare would be proud), my physician prescribed a popular sleep medication, which helped me sleep a few hours but left me drowsy and feeling hung-over. This was not the answer. I stopped the medication after four nights.

In desperation, I mentioned my situation to a physician friend, who listened to my symptoms and immediately referred me to a sleep disorder clinic. I didn’t realize there were such things, specialists (neurologists, primarily) studying chronic and short-term insomnia; focusing on different types of insomnia, whether the problem is “falling asleep,” “staying asleep,” or “waking throughout the night,” or a combination of these; pursuing links between chronic (primarily inflammatory, e.g., hypertension, heart disease, obesity/diabetes) illnesses and lack of sleep; discovering some of the root causes of sleeplessness, both psychological and physiological (although there is still so much unknown about sleeping); and learning, ever so slowly, the long-term effects on health of poor sleep.

The neurologist, head of the local sleep disorder clinic, was a life-saver. She asked me pertinent questions, understood my imprecise answers, recognized the inconsistency in my sleep habits and patterns, and ultimately suggested a diagnosis as to what might be the underlying cause of my insomnia. I finally had an ally in my night-time battle with this monster. The physician surmised that something in my brain didn’t “turn-off,” enabling me to power down and sleep. We discussed at length my options, with the initial goal to get me to sleep consistently, to reduce my panic, to find some tools that might help me daily/nightly. She prescribed Clonozapem, a medication used for people prone to seizures or panic attacks. It works by calming the brain and the nerves. For a number of years, this drug was my savior. Let me very honest, for someone who doesn’t like to take drugs, I appreciate the contradiction. However, I stopped my nightly struggle with sleep and the built-in negativity associated with it. My energy level increased, my moodiness lifted, the brain fog disappeared.

My physician warned me, though, that the efficacy of the medication could diminish over time. I checked in with her on an annual basis, making sure the dosage was working, discussing options (not many since I refused the “sleep aid” medications because of my prior poor experience with them), making sure I wasn’t having any adverse side effects. I had perhaps ten good years on this protocol. I slept generally well most of the time, but if days had added stress or my high anxiety or worry kicked in, nothing overpowered those emotions. Slowly, though, even in non-stressful times I started having trouble either falling asleep or waking middle of the night (2:00 or 3:00 in the morning) and not being able to fall back to sleep. Napping generally wasn’t an option, so my panic started again, not full-blown, but enough to have a snowball effect: no sleep, worry about no sleep, and then, of course, no sleep.

We tweaked my routine by adding Melatonin to the prescribed dosage of Clonozapem. Melatonin is a natural hormone produced by the body’s pineal gland, at night, when it’s dark. Many people use Melatonin when traveling for jet lag or for shift work, where it’s effectiveness seems clear. It’s not so certain whether Melatonin is effective for insomnia, what an appropriate dosage might be, or whether any particular product is made properly (no FDA approval required). Some studies show only a placebo effect.

“Some studies show promise for the use of melatonin in shortening the time it takes to fall asleep and reducing the number of awakenings, but not necessarily total sleep time. Other studies show no benefit at all with melatonin.” https://sleepfoundation.org/sleep-topics/melatonin-and

I tried the combination for a number of years, still experiencing sleepless nights. And then, we moved to Austin, living in a high-rise condo downtown, next to a train track with a sharp right angle next to our building. The screech of 100-car freight trains sometimes several times an hour all-night long ensured that no matter what I did, I wasn’t getting consistent sleep (some of our neighbors insisted one got used to the noise: I never did). I was frantic and so tired!

We finally moved to Boulder several years ago. My sleep disruption got worse, with many consecutive nights of waking at 2:00 or 3:00 a.m., staying awake, finally getting up about 6:00 a.m., and having a rush of sleepiness overwhelm me. I might go back to bed for twenty minutes, where I physically felt my brain sink through several layers of relaxation, not totally asleep (my mind was still processing that I wasn’t sleeping, hearing house sounds), but enough of something to give me energy for the next few hours. Clearly this was not ideal: how could I plan my day? Wasn’t it weird to go back to sleep right after one got up? I still needed a thirty-minute nap during the day to refresh myself for the afternoon and evening, only to have this night-time wakening solidify into a nightly occurrence.

I needed to find a new sleep specialist. In the intervening years since the mid-1990s (it’d been over twenty years since my first foray into this nether world of trying to sleep well), new protocols of sleep behavior mechanics had been introduced, new medications seemed promising, maybe my body had changed. The new physician took my sleep/non-sleep history. She noted that my airways were narrow and explained that when we lay down, the muscles loosen, which can narrow the passageway even more, thus making it more difficult to breathe, which may cause sleep disruptions. She immediately recommended a “home sleep test.” I’d wear a monitoring device from 10:00 p.m. to 6:00 a.m., measuring when I slept, how deeply I slept, how many times I awoke during the night, my oxygen saturation level, etc. The device was uncomfortable, requiring I lay on my back all night so I wouldn’t knock it off. I always sleep on my side so already a change in patterns. How could that not affect the test? Not to worry, the first time the connection to the physician’s office didn’t work so there was no read-out. Try again! This time, the test showed that my breathing stopped a number of times during the night, symptoms of mild sleep apnea! I wasn’t the typical body type (usually middle-aged men, often overweight, heavy snorers) but I was learning that this type of sleep interruption isn’t unusual.

More than 22 million Americans currently suffer from sleep apnea, many moderate to severe undiagnosed obstructive sleep apnea (OSA). A common remedy is to wear a CPAP (continuous positive airway pressure) mask. The mask (which goes over the nose) is attached to a machine via a hose for continuous air pressure to keep the air passage open during sleep. Without the constant wakening caused by the brain (think “flight or fight,” adrenaline) because of insufficient oxygen, more constant sleep results. https://www.sleepresolutions.com/blog/what-is-a-sleep-apnea-mask-cpap-mask

I did not want to wear this device. It is uncomfortable. It is noisy. We travel a lot so wearing it would be inconsistent. And besides, my “numbers” indicated mild sleep apnea. Surely many of us with this level of oxygen desaturation do not wear CPAP masks. I resisted, finally wondering if living at altitude (approximately 5400’ here in Boulder) caused or contributed to my insomnia. I’d had insomnia for many years. Was the sleep apnea (which also causes inability to sleep) a result of living here? I asked the doctor and received a very inconclusive answer. I did a home sleep study test in San Diego, definitely sea level. My sleep apnea results were slightly better (i.e., not as low oxygen desaturation), but probably not enough better to consider moving to lower elevation (with the hope that my sleep would get qualitatively better).

I decided to try an oral appliance, which looks like a huge retainer. The appliance pushes one’s jar slightly forward while sleeping, in an attempt to keep the airway more open. It has side effects, e.g., potential jar misalignment that affects one’s bite, possible damage to crowns or fillings from jar movement, soreness in the mornings after the device is removed. Still I tried it, but I saw no positive results after four weeks use other than heavier breathing (not pleasant for my spouse). This was not going to be a viable solution to me.

Acupuncture is used for the treatment of insomnia in China. In several trials in western countries, clinical studies have shown that acupuncture may have better results than traditional medications in combatting insomnia. I experienced mixed results, several times finding sound sleep, other times not seeing much difference from my normal patterns. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3156618/

Back at the sleep disorder institute, I was referred to a behavioral sleep specialist (her practice is considered “cognitive behavioral therapy” or CBT). There is an entire body of literature related to sleep behavior, e.g., do not look at electronic screens before bed, sleep in a very dark and cool room, meditate, wear blue-light glasses for 90 minutes before bed to block out UV rays, do NOT stay in bed if you wake (tough one because the natural inclination is to try to go back to sleep and one can’t do that by getting up and reading a boring book). The therapist assured me that I needed to give my body time to adapt to these changes. This meant, perhaps, more weeks without decent sleep with the chance that these behavioral changes would in fact help me sleep better. And be positive about going to bed: “Yay, I’m going to bed. I get to sleep. This is great.” Much harder to do than one thinks, after years and years of each night wondering how my sleep might be.

I implemented most of these changes. The most difficult is to get out of bed, go to another room, read a book until sleepy, and then return to bed when I wake during the night and know that sleep is not coming. I diligently try this but it is so counter-intuitive that I find my mind cannot grasp its potential benefits. I purchased special blue-light glasses; I do not read my computer, iPad or iPhone before bed; our bedroom has black-out curtains (and yes, I stumble and bump into things when I get up); the room’s temperature is cooler than I’d like (so I use more blankets); I signed up for a meditation app (Headspace) but am inconsistent in using it (seriously, I forget). After a number of months, I didn’t experience much benefit.

Is my insomnia the result of too active brain waves or nerves as diagnosed almost twenty-five years ago? Is the mild sleep apnea contributing to the insomnia or a red herring? If my problems are physical, how can behavioral changes really help alleviate them?

I shared my story a few weeks ago with a dear friend. She, too, has had insomnia for years, hers related to anxiety. We empathized over the panic and sheer exhaustion of not sleeping. We shared different remedies that we’ve tried. She suggested magnesium, which has helped her to relax and sleep. I did some research on magnesium and was surprised at what I found:

“Supplementation of magnesium appears to improve subjective measures of insomnia such as ISI score, sleep efficiency, sleep time and sleep onset latency, early morning awakening, and likewise, insomnia objective measures such as concentration of serum renin, melatonin, and serum cortisol, in elderly people.” https://www.ncbi.nlm.nih.gov/pubmed/23853635

My friend also recommended a local doctor who focuses on insomnia and hormonal issues (another area that no one has really tested for me, just prescribing standard hormone replacement therapy over the years post-menopause) using only natural remedies. She’s popular so I wasn’t able to set an appointment for almost two months. I’m optimistic that a more holistic approach might be what I need. In the meantime, the magnesium supplement seems to be helping in combination with a low dose of my old stand-by, Clonazapem. I’m also continuing some of the recommended behavioral modifications, especially the dark/cool bedroom and no electronics before bedtime (which is also important so I don’t read an email that causes my brain to go into overdrive just when I’m trying to relax).

I hope to have more news after my visit to the new doctor in August. I don’t want to “shop” physicians, but a second opinion seems sound, given my long, long history with this beast. I try to be more optimistic about sleeping. If I got to the point that I only had one poor night a week, I'd be happy, a reasonable price to pay for insomnia…more than that, though, I will start panicking again, seeking new solutions, trying to figure out, once again, a new path to restful nights.