Parkinson’s disease (PD) comes with its fair share of challenges. Among the most frustrating symptoms of Parkinson’s is insomnia, or difficulty sleeping. Research has found that the majority of people with PD experience trouble sleeping, and more than 3,000 members of MyParkinsonsTeam report difficulty sleeping as a symptom. Lack of regular sleep can have tremendous impacts on a person’s quality of life. In fact, dealing with a sleep deficit can cause anyone to experience problems with memory and thinking.
Good, restful sleep is vital for people with Parkinson’s, but it isn’t always easy to get quality sleep. Luckily, there are some ways you can work toward combating insomnia with Parkinson’s.
Sleep disorders are one of the most common non-motor symptoms of people living with Parkinson’s disease. In fact, research shows that sleep disorders affect approximately 64 percent of people with PD. Of that percentage, up to 80 percent deal with insomnia — a far higher percentage than the general population who live with sleep difficulties.
While insomnia refers to the inability to fall asleep or stay asleep, sleep issues can lead to a host of issues, including the following medical conditions:
Insomnia can have serious effects on a person’s quality of life. One MyParkinsonsTeam member shared their experience with insomnia. “I usually sleep for four hours, wake up, toss in bed for an hour, and sleep for two, usually maxing out at six total,” they wrote. “I’m a mess the next day after 1 p.m. or so. I don’t know what PD fatigue is like compared to sleepless fatigue because I can’t tell which I am affected by. Likewise, I don’t know what my new normal is because I seem to always be tired.”
Another member reported having a similar experience. “If I do get sleep, it’s only for a few hours, and then I’m up for the rest of the day,” they posted. They continued, and wrote their insomnia even affected their ability to hold their job. “I had to stop work a few years ago, and that is tough,” they shared.
Insomnia can also affect more than just the person with PD. Caregivers, family members, and bed partners can all suffer from the effects of insomnia and related sleep dysfunction. Treating this problem is important not just for you but also for your loved ones.
Getting through the day without enough sleep is challenging enough. For those dealing with chronic insomnia, this tiredness can evolve into excessive daytime sleepiness (EDS). Having EDS may put a person with Parkinson’s in danger, as it can increase the risk of accidents during tasks like driving.
The relationship between cognitive (thinking) problems and insomnia in PD appears to be bidirectional. Those with Parkinson’s who experience sleep disturbances are at higher risk of cognitive decline. This cognitive decline can, in turn, worsen sleep problems.
There are several reasons why people with PD may experience insomnia.
Although people with Parkinson’s do not experience tremors in their sleep, motor symptoms can cause difficulty with finding the right position or getting comfortable enough to fall and stay asleep.
Both insomnia and Parkinson’s disease have been correlated with anxiety and depression. People who experience PD psychosis, including hallucinations and/or delusions, are also at higher risk of experiencing sleep problems.
Certain medications used to treat Parkinson’s and its complications can cause insomnia, including:
Parkinson’s is a progressive disease, meaning its symptoms generally worsen over time. Disease progression has been found to correlate with sleep dysfunction in people with PD. As pain and problems with motor symptoms increase, so do sleep problems.
Research has found that people over 65 years of age are more likely to experience issues with insomnia.
The presence of PD lesions in both the upper brainstem and lower midbrain is a risk factor for the development of insomnia in Parkinson’s.
Research has found that people with Parkinson’s are at higher risk of developing certain sleep disorders. These disorders can both interfere with sleep and worsen insomnia.
According to the results of a study that compared people with PD and REM disorder, people with PD but no REM issues, and the general population, researchers found REM sleep behavior disorder affected more than 50 percent of the participants with Parkinson’s. (There were more than 200 participants in the study overall.) Such a statistic makes REM sleep disorders one of the most common sleep disorders for people living with PD. This disorder causes a person to physically act out what is happening in their dreams. It typically develops years before a person is diagnosed with PD and has been associated with severe cognitive decline in Parkinson’s.
Obstructive sleep apnea is a sleep disorder in which the muscles in the back of the throat relax, partially or completely blocking the airways. This repeatedly occurs throughout the night, disrupting a person’s sleep. People with Parkinson’s often live with other conditions that increase the risk of developing obstructive sleep apnea.
The results of studies looking at people with Parkinson’s and restless leg syndrome (RLS) — a condition that causes a strong, uncomfortable urge to move the legs, often when lying down to rest — vary greatly. Some note as few as 3 percent of those studied have RLS, while others report 80 percent. Regardless of the numbers, when someone with Parkinson’s has RLS, it often shows up in the early stages of PD. A lack of the chemical dopamine in the body is thought to be behind RLS.
Nocturia refers to frequent nighttime urination (peeing) that disrupts sleep. According to the Journal of Sleep Research, nocturia affects between 60 percent to 80 percent of people with Parkinson’s. Though it is not considered a sleep disorder, nocturia interferes with a person’s sleep duration and quality.
The way insomnia is treated with Parkinson’s depends on several factors. The first thing your doctor will do is rule out the possibility of other sleep disorders, such as obstructive sleep apnea or REM sleep behavior disorder.
If your doctor diagnoses you with a sleep disorder, they will want to treat that along with your PD. They may order a sleep study (also known as polysomnography), which can be done at home or at a sleep center, to diagnose any potential sleep disorders. A sleep study will help your health care provider understand your sleep patterns and the underlying causes of your sleep disruption. Treatments for sleep disorders can include continuous positive airway pressure (CPAP) machines (to help keep the airways open during sleep), light therapy, and certain sleep medications (over the counter and prescription).
If you don’t have a sleep disorder, your doctor will determine the best way to treat your PD-related insomnia. Interestingly, some of the medications that cause insomnia can also treat it. Your doctor will discuss these medications and their side effects with you in order to determine the best course of action.
In a small trial of people with Parkinson’s, a medication called eszopiclone (Lunesta) was shown to have good results in treating PD-related insomnia. Another medication, modafinil (Provigil), can help improve daytime wakefulness.
It is important to note that the long-term use of sleep aids can pose certain problems, such as eventual tolerance to the medications. As one MyParkinsonsTeam member noted, “I take some heavy-duty sleep meds, but I guess I’ve just grown accustomed to them, and they don’t work long-term for me anymore. I have such a high tolerance that over-the-counter meds do nothing. Believe me, I’ve tried them all.”
Non-pharmacological treatments are also an option. Good sleep habits (referred to as sleep hygiene) play an important role in getting more consistent, higher quality sleep. Some strategies for practicing good sleep hygiene include:
Keeping a sleep diary can help improve your sleep hygiene and identify triggers that may be causing sleep disturbances.
Research has found that physical activity promotes better sleep quality and can even help you fall asleep more quickly.
Melatonin is a naturally occurring hormone that indirectly promotes sleep. This hormone is also available in over-the-counter sleep aids. As one member shared, “Melatonin helps me to fall asleep, and I tend to sleep more deeply with it. But I still wake periodically to urinate, and sometimes I can’t get back to sleep.”
Cognitive behavioral therapy (CBT) is considered the first line of defense against insomnia by the American College of Physicians. With CBT, people overcome negative thought and behavior patterns that contribute to insomnia through a combination of cognitive therapy, sleep restriction, and stimulus control. It’s considered to be a safe and effective treatment for insomnia.
CBT can also help with other issues that accompany PD, such as depression and anxiety. Maintaining your mental health is vital, making CBT an excellent option for many reasons.
For some people, a surgery called deep brain stimulation (DBS) may be an option. It’s the most commonly performed surgery for people with Parkinson’s, but it is only for people who have lived with the disease for at least four years, have dyskinesia (uncontrolled involuntary movements), and have periods where medications don’t work (“off time”). A DBS procedure is done primarily to help improve motor symptoms such as stiffness and tremor. But recent research has shown it to be effective for PD-related insomnia as well. Your doctor will determine if DBS is an option for you.
On MyParkinsonsTeam, the social network for people diagnosed with Parkinson’s disease, as well as their loved ones, more than 87,000 members ask questions, share stories, enjoy conversations, and get support from people around the world who know what it’s like to live with the disease.
Have you experienced insomnia with Parkinson’s? How have you managed sleep problems? Share your experience and tips in the comments below or by posting on MyParkinsonsTeam.