Throughout his early teenage years, Ben Perez had insomnia that was hard to manage, allowing him only four or five hours of sleep each night. Every night he’d walk around his home until his energy ran out. He wished that he could regularly sleep through the night for all the benefits he knew it would bring: improved focus for school, enhanced energy for socializing and much more. The universe works in mysterious ways, as it took a C5-6 spinal cord injury at age 16 to fulfill that wish.
Post-injury, exhaustion triggered the sleep he had long dreamed of. Combined with the side effects of anti-spasm medication, Perez was able to simply close his eyes and let the drowsiness come to him. “For a period of time after my injury, I actually slept better,” says Perez. “At some point right after becoming a paralyzed person, I thought, ‘Well, I guess you aren’t going to deal with this [lying awake in bed or wandering around], so you don’t have a choice.’ And that led me to fall back asleep very quickly because it was a strangely freeing thing.” His newfound regular sleep was a welcome respite from restless nights, especially right after his injury when energy was so crucial.
Unfortunately, the improved sleep only lasted so long.
“As the spinal cord injury became a part of my regular life, the sleep issues crept back into my routines,” says Perez. “They were more in line with what I had before, and they were compounded by my injury.” New issues included discomfort if the room was the wrong temperature, muscle spasms and simply re-discovering his body. Perez found his mind was “no longer distracted” by the need to go to sleep. “I’m suddenly aware of my own mental map and that can trigger a lot of nerve pain.” That pain was enough to knock hours off his sleep. Things became just like they were pre-injury, but without the ability to move around the house and manage insomnia the way he used to — so really, they were worse, with no solutions in sight.
Like Perez, a couple years ago, I found myself struggling to get a good night’s sleep. For the 15 years since I sustained a C5-6 injury, resting on my back on a memory foam mattress protected my skin and helped me sleep. However, in 2016 I removed the baclofen pump that mellowed my body through the night.
After that, my lower back began tweaking out once I lay flat, causing major pain and violent spasms that repositioned me in unwanted ways. Sometimes, I’d be unable to stay asleep and even when I did sleep, I’d often awaken to the heavy sweat that comes with dysreflexia. The discomfort was frustrating enough, but I also knew it was hurting my body and had to be fixed.
Sleep problems like Perez’s nerve pain and my spasticity are widespread for people with paralysis. Although there isn’t much research on the subject, professional studies show that many factors impact our community’s sleep, while restlessness can affect our lives in a multitude of ways.
Dr. M. Safwan Badr, a past president of the American Academy of Sleep Medicine and chair of the Wayne State University School of Medicine Department of Internal Medicine, says there is hope. Badr’s advice to people with paralysis is straightforward: “Do not accept poor sleep as ‘just the way it is.’ If you can improve your sleep, many aspects of your life will improve,” he says. “Prioritize sleep.”
Complex Issues, Complex Consequences
Because muscles for breathing include both the diaphragm and the intercostal muscles, injuries ranging from C2, which first connects to the diaphragm, through T11, which controls the lowest intercostal muscle, can affect breathing patterns and sleep through the night. Additionally, nerve pain and muscle spasms — which occur at all levels of SCI — can keep people awake for long periods of time, and just waking up briefly can interrupt important sleep cycles. When you add in SCI-related body temperature regulation issues, you’ve got a multi-headed beast that can make good sleep seem unattainable.
Donald Fogelberg, a professor at the University of Washington, has researched the relationship between sleep and spinal cord injury for more than a decade. His sleep research began in the mid-2000s, when he was looking at pressure sores and realized that the ways people rest affect how ulcers might develop. “Sleep is multidimensional,” he says, citing factors ranging from the amount of sleep, to the timing of naps, to changes in mid-rest breathing and movement. In fact, there are over 90 sleep-related disorders one could be diagnosed with.
“Sleep problems after an SCI tend to be complex,” Fogelberg says, with the actual problems varying from person to person and by type of injury. For example, injuries at C3 or higher reduce the amount of melatonin the body produces, which makes it harder to rest at all. Unique sleeping positions and limited control of breathing muscles increase rates of sleep apnea, which can reduce oxygen flow to the brain.
Restlessness impacts lives in a range of ways. Multiple studies show that sleep can influence chronic pain, with less sleep leading to more pain the following day and night, building a vicious cycle that can last for days or more. Losing sleep affects energy, mood and one’s ability to focus in general. Fogelberg says this creates “functional consequences,” such as difficulty making it to appointments, holding jobs or being effective at work or school.
Beyond the obvious, there are theoretical impacts. For example, human growth hormone is produced as we rest, and HGH helps with repairing broken tissue — so losing sleep might affect the ability to heal pressure ulcers and other injuries, whether related to SCI or not. Fogelberg and Badr agree that there needs to be more research on the connection between sleep and SCI, and they also agree there is no reason to wait around: The time to take action is now.
Different People, Different Problems
As they do with many other obstacles presented by paralysis, quads and paras who don’t sleep well come up with creative solutions to rest through the night. Brian Swift has been a C5-6 quad since 1979, when he joined the SCI crew from a football accident at age 17. The first 30-plus years featured quality sleep, but Swift ran into a difficult spell of poor sleep starting eight years ago. He endured a one and a half year stretch where he only got around three hours of sleep per night, usually between 2 and 6 a.m.
His first round of attempted solutions took the form of medication: “I tried all the things my doctor recommended, like melatonin and a couple sleeping pills, but it had no effect,” he says. It wasn’t until he started to change the way he lived that Swift began to see results. His doctor suggested avoiding midday naps, keeping off his phone and computer starting a half-hour before bedtime, and tiring out his mind and body so he was exhausted by bedtime.
“I did a lot to try to stay more active during the day,” he says. Additionally, Swift tried to concentrate his work that required mental acuity earlier in the day, discovering that being engaged midday would help him sleep better at night. He found that reading a book in bed helped transition his mind to sleep and he made a habit out of it. The rewards for the lifestyle change were plentiful — not just improved sleep, but faster bowel programs and less spasticity.
Autumn Desmarias is just over one year out from a T5-9 incomplete injury. “It’s been kind of a roller coaster,” says the Michigan resident. “I was doing really well at first, then went kind of downhill, but things have evened out.” One thing that’s yet to even out, though, is sleep. “The main thing for me are the spasms,” she says, adding that body temperature swings and difficulty positioning had all combined to limit her to four straight days of fewer than three hours sleep.
On good nights, Desmarias only gets around five hours of sleep in total. “Even then I’m waking up in the middle of the night,” she says, “and the longest I’ll stay asleep at a time is two or maybe three hours tops.” Her lack of sleep affects her energy level, her ability to focus and more.
Medications haven’t done the trick for more than a couple of days, as both natural sleep remedies and prescription meds would work for one or two nights then stop being effective. She tries to do relaxing things when she wakes up, whether it’s staying in bed and drawing or getting into her chair and writing short stories. “Sometimes I just try to close my eyes and relax,” she says, “even though it doesn’t work to fall asleep.”
Desmarias is looking into solutions to the sleep-interrupting spasms and might get a baclofen pump to mellow things out. The past year has been frustrating, but she is confident that she’ll come up with a better sleep strategy soon.
Rachel Wilson has been a C4-5 quad since she dove into a pool at the wrong angle in 2000. If the temperature isn’t just right, she is prone to sleeping problems — either spasticity when things are too cold, or dysreflexia when things are too hot. Staying warm on cold nights can be a battle. “If I sleep with a blanket on me, the blanket and I are eventually going to go to war,” she says.
The combination of temperature issues and Wilson’s sensitivity to light has led to another cover: her pillow. “I’m a weirdo, I sleep with the pillow over my face. … The biggest problem I worry about is breathing in too much carbon dioxide because I’m inhaling my own breath.” As a fix, Wilson positions the pillow so there is room for air to flow out the side.
Wilson originally had an alternating-pressure air mattress, but its loud pump only complicated her sleeping. She eventually found another easy-to-buy system that still protects her skin. “I do have a memory foam mattress I use, and it’s amazing,” she says.
She was also taking over 120 mg of baclofen per day to reduce the spasms that interrupted sleep, but recent changes in California law have allowed her to use some CBD-based substances instead. A combination of tinctures, gummies, and smoking before going to bed has helped with spasms and sleeplessness.
It’s a constant learning process, but it seems that she has finally devised a combination of mattresses, temperatures, covers and medications that works for her. Now her biggest problems are temperature regulation and waking on account of personal attendants coming to turn her.
Finding Solutions That Work For You
So how exactly can somebody with SCI improve their sleep? There’s no easy answer, but there are steps that can help.
Badr notes that there are physicians who specialize in sleep and can give simple advice, prescribe medications or provide the right kind of medical devices. If somebody has sleep apnea, for example, they may need a CPAP machine, while the right kind of sleeping med can help with going to sleep and staying there. Fogelberg and Badr both recommend developing a sleep schedule. Although midday naps might feel good, developing a regular pattern that provides eight hours nighttime rest is usually the best way to go.
Because other health conditions impact sleep, addressing those issues — whether by consulting one’s doctor, exploring support groups or chatting with friends with paralysis — can improve the amount and quality of rest. “Solutions should be multi-component,” Fogelberg notes. “If you fix the other problems, like nerve pain and sleep apnea, then sleep will fix itself.” Folks might not sleep perfectly through the entire night if they address related health issues, but every bit of rest improves other parts of life along with it.
Thinking creatively can also be helpful. The solution to my sleep problems included a new bed set up, a new medication regimen and, unexpectedly, a tool used by snowboarders. I switched out my flat bed frame for a queen-sized frame that sits up. I now sleep with the remote nearby so I can adjust the bed to alleviate spasms and rest. Boosting my baclofen and adding edible CBD calms down spasms and mellows out my mind for deeper sleep.
Still, all that wouldn’t stop my right leg from spasming, so I kept waking up with twisted hips and sweaty dysreflexia. After some brainstorming and online shopping, I purchased a 20-foot strap meant for securing snowboards to SUVs, wrapped it around my bed, and put a folded towel between the strap and my thighs. Once I identified the proper strap tightness to keep things secure without hurting my thighs, it has held my legs straight and I haven’t once woken up with twisted hips or dysreflexia.
Given the many barriers that get in the way of sleep, quads and paras sometimes need to be creative when finding solutions to improve their rest. Brainstorming and experiments range from positioning to managing temperatures, while changing medication regimes can be a worthwhile investment.
Fixing all of your sleeping problems post-SCI may be too much to dream for, but seeking solutions for a better sleep is definitely worth the time and energy. For me, it took a whole new bed frame, changing medications, and securing my legs. Rachel Wilson now uses a face-covering pillow and new medications. Brian Swift discovered exercise and good books as natural sleep supports. Ben Perez stays away from his phone and works with his partner to keep things the right temperature. He still says his sleep is interrupted “around once a month” but that’s way better than the several hours every night he dealt with before. All it took was some creativity, some effort and a little bit of time.
** This post was originally published on https://www.newmobility.com/2019/12/dreaming-of-a-good-nights-sleep/