Counting Sheep: One Woman's Story About TBI and Insomnia

Milk and honey, melatonin, lavender oil, cold showers, sleeping pills, hypnotherapy, meditation, cherry juice, acupuncture, Chinese herbs. I’ve tried it all, ad nauseam, for my insomnia. Nothing seemed to work. Nothing, that is, until I learned the root of my nighttime woes: traumatic brain injury (TBI).

I was hit by a car while crossing the street in Westport, Connecticut, in 1999, when I was 16 years old. The resulting injuries, including those to my brain, were severe. The medics at the scene found me unconscious and rushed me to the trauma center at Bridgeport Hospital, where I underwent surgery to remove a ruptured spleen, and metal rods were implanted in a broken femur and humerus bone on my left side.

Doctors also placed an intracranial monitor through my skull to monitor the pressure in my brain. Six days later, I started to awaken from the coma. Once stable, I was sent to a rehabilitation facility, where I relearned how to walk, talk, read, write, and function as I had before the accident.

Weeks into my month-and-a-half-long stint at rehab, I started to complain about trouble falling asleep. The nurses noted the complaint in my chart and added one more pill to my nightly regimen.

Sleep continued to elude me after I returned home from rehab. Night after night I’d toss and turn in bed, struggling to get some shut-eye.

For more than a decade I tried every sleep therapy under the sun. I embarked on each new treatment with hope, only to be let down weeks or months later when I’d find myself still wide awake late at night, struggling for some slumber.

The lack of sleep caused me to stress about how I was going to perform at school or work the following day, which only kept me awake longer. Eventually I’d pass out just as the sun was peeking through my curtains, then wake up and be forced to stumble through my day in a zombified state. I'd get a good night’s sleep as a result of exhaustion every once in a while. But then the process would just start all over again.

This went on for many years.

Then one day in 2017, while visiting a trauma specialist about the constant pain I’d been experiencing in my left knee and hip — a consequence of the break from the accident — the doctor told me the answer to my sleep problems. While reviewing my past medical history, he asked why I was taking Lexapro, a drug commonly prescribed for anxiety and depression.

“That’s for sleep,” I said. “I’ve been dealing with insomnia for a very long time.”

The doctor looked at me. “That might be related to traumatic brain injury,” he said.

I was floored.

In the 18 years since my accident, no one had ever suggested that any of my physical or mental problems were related to TBI. There was never any follow-up after I was released from the rehab, and I believed that once I looked better on the outside, I was fully recovered. This is a common misconception among people with brain injuries, I’ve since learned.

The truth is the effects of a traumatic brain injury can linger. And sleeplessness is one of the big ones.

Sleep problems are one of the most common symptoms after a traumatic brain injury, affecting 30 to 70 percent of people with brain injuries, according to research published in November 2012 in the journal Neurologic Clinics.

Common post-TBI sleep problems include:

• Insomnia
• Fatigue and daytime sleepiness
• Narcolepsy
• Sleep apnea
• Periodic limb movement disorder
• Delayed sleep phase syndrome

And post-TBI sleep problems can affect a person regardless of the severity of the brain injury. An individual who receives a blow to the head playing football without loss of consciousness, referred to as a concussion or mild TBI (mTBI), can fare just as badly as someone who has a severe brain injury with loss of consciousness.

Some research suggests that people who’ve experienced mTBI or concussion actually have worse sleep problems than individuals who’ve experienced more severe brain injury, because they may be more aware of their deficits or they may have greater pressure to reintegrate into their daily life more quickly.

"Although there appear to be differences in terms of specific sleep complaints reported, there is no question that insufficient and disturbed sleep is common among patients with TBI of all severity,” says Emerson Wickwire, PhD, an assistant professor and the director of the insomnia program at the University of Maryland School of Medicine in Baltimore. “Further, these sleep deficiencies have been associated with a range of worsened outcomes following TBI."

Researchers haven’t quite figured out why there’s such a high rate of sleep problems in people with TBI, but there are some hypotheses:

• The injury may have damaged the neurotransmitters in the brain that regulate sleep, or the neural networks that regulate the urge to sleep, circadian rhythm, and sleep quality.
• The brain’s ability to control breathing during sleep is altered, resulting in periods of apnea.
• Medications taken after brain injury may cause people to have problems getting to sleep or staying awake.

“Why this occurs is an active area of investigation,” says Danielle Sandsmark, MD, PhD, an assistant professor of neurology at the Hospital of the University of Pennsylvania. “Our understanding of sleep in general is evolving, so no one knows why people with TBI are particularly susceptible.”

In order for doctors to properly diagnose sleep problems related to TBI, it’s important for patients and clinicians to have an open discussion about the issue.

“Often there’s not enough screening for sleep problems,” says Dr. Sandsmark, adding that sleep issues can play into other symptoms post-TBI — such as headaches and memory problems — that patients may feel are more pertinent to their overall health and well-being.

While it’s important for clinicians to ask their patients about sleep issues, Sandsmark says that patients should bring any sleep disturbances they’re experiencing to the attention of their physicians. “Sleep issues are the bottom thing on the list of complaints,” she says, adding that often patients don’t know which doctor they should talk to about the problem. “At the end of the day you just need to bring it to somebody’s attention so you can get help,” she says.

Doctors screen TBI patients for sleep problems by:

• Conducting a physical exam to document a person’s trauma and the onset of sleep issues; the exam can also rule out any preexisting sleep disorder and assess the progression of symptoms after a TBI
• Asking the patient to document their sleep patterns in a sleep log
• Actigraphy, a test that assesses sleep-wake patterns over time using a small wrist-worn device to measure movement.
• Polysomnography, with a multiple sleep latency test, which is performed in a facility where a sleep technician applies electrodes to the body that electronically transmit and record your physical activities while you sleep

"Sleep disturbances develop as early as within two weeks of injury and can last for months or years. Thus, it is essential to screen, triage, and treat sleep complaints early in recovery to prevent worsening of symptoms," says Dr. Wickwire.

Treatment for sleep disorders following a concussion or other TBI are specific and may include the use of medications, a continuous positive airway pressure (CPAP) or similar device, or behavioral modifications.

“My approach is generally to use something that kills two birds with one stone,” says Sandsmark. So if one of her patients complains of headaches and sleep problems, she might prescribe a form of medication that treats both. The same goes for patients who complain of nighttime pain and insomnia or depression and sleep issues.

Medications can be prescribed for short-term or long-term use, after which Sandsmark suggests cognitive behavioral therapy to deal with sleep problems associated with a concussion or other TBI.

“The most important thing to remember is that poor sleep really makes everything worse,” says Sandsmark. “So getting on top of it early is important.”

Today I still have sleep problems, but they’re not as severe or crippling as they once were. I’ve adopted several healthy bedtime habits to help with sleep: I maintain a consistent sleep schedule, avoid the use of electronic devices close to bedtime, and write down thoughts and things to do on a notepad next to my bed to relieve anxiety, avoid sugar close to bedtime, and drink herbal tea before bed. And I was prescribed medication to aid my sleep on the nights when I need it (which fortunately isn’t often).

My insomnia may never fully go away, but knowing why I have it has been a gift that helps me to accept the sleepless nights a bit better.