Tips for achieving restorative sleep while living with Huntington’s disease
Restorative sleep isn't a luxury, but rather an important part of managing health
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Sleep is supposed to restore the body and mind, but living with Huntington’s disease (HD) can make getting a peaceful night of rest more complicated.
HD doesn’t stop affecting me simply because I get into bed. Involuntary movements, restlessness, anxiety, racing thoughts, medication effects, and changes within the brain can all interfere with my ability to fall or remain asleep.
There have been nights when my body felt tired but my mind wouldn’t settle. Other times, I’ve fallen asleep only to wake up during the night and struggle to drift off again. When sleep becomes inconsistent, I feel the effects throughout the following day. Fatigue can make it harder to concentrate, manage my emotions, maintain my balance, and complete ordinary responsibilities.
Poor sleep can also make other HD symptoms feel more noticeable. When I’m exhausted, I may feel less coordinated, more irritable, or mentally foggy. My choreatic movements may become more difficult to manage, especially when fatigue is combined with stress. This can create a frustrating cycle: My symptoms interfere with sleep, and inadequate sleep makes my symptoms more challenging.
It’s not one-size-fits-all
Over the years, I’ve tried different approaches to improve my sleep. I’ve taken prescribed medications after consulting with my medical providers. I’ve also tried over-the-counter supplements designed to support sleep. Some options have helped more than others, and what worked at one point didn’t always continue working in the same way.
This experience has taught me that sleep support is not one-size-fits-all. A medication or supplement that helps one person may be ineffective or unsafe for another. Supplements can interact with prescription medications or create unwanted side effects. Because many people living with HD take several medications, it’s especially important to consult a licensed medical professional before adding, stopping, or changing anything.
In addition to medication, I’ve found that creating a consistent nighttime routine can help signal to my body that it’s time to slow down. I try to go to bed and wake up around the same time whenever possible. My routine may include taking my evening medications, reducing screen time, journaling, meditating, or practicing slow breathing.
The 4-7-8 breathing technique is one tool I use to calm my nervous system. Gentle stretching, restorative yoga, or quiet music can also help release some of the tension I carry during the day. These practices don’t guarantee perfect sleep, but they can create a more peaceful transition between activity and rest.
The sleep environment also matters. A cool, dark, and quiet room can support better rest. Comfortable bedding and supportive pillows may help reduce discomfort caused by movement or changes in posture. Keeping pathways clear and using night lights can improve safety when getting up during the night, especially for someone dealing with balance problems.
I try to limit stimulation before bedtime. Watching upsetting news, working on stressful assignments, or having emotionally difficult conversations late at night can leave my mind activated. When possible, I give myself time to decompress. I may write down the thoughts or tasks on my mind so I don’t feel responsible for remembering everything overnight.
Daytime habits can influence nighttime sleep as well. Gentle movement during the day can help my body use energy in a healthy way, while long or late naps may make it more difficult to sleep at night. I also pay attention to caffeine and avoid consuming it too late in the day. Eating a large or uncomfortable meal near bedtime can affect sleep, so I try to be mindful of timing while still meeting my nutritional needs.
When I wake during the night, I try not to become angry with myself. Watching the clock and worrying about how little sleep I’m getting usually makes me more anxious. Instead, I focus on resting, breathing slowly, or doing something quiet until I begin to feel sleepy again.
It’s important to tell medical providers when sleep disruptions become persistent. Insomnia, excessive daytime sleepiness, loud snoring, unusual movements during sleep, or major changes in sleep patterns may require further evaluation. A physician may review medications, identify possible underlying conditions, or recommend a sleep specialist.
Restorative sleep is not a luxury. It is an important part of managing my overall health and living well with HD. I may not be able to control every restless night, but I can create supportive routines, communicate with my care team, and treat myself with compassion when sleep doesn’t come easily.
Living with HD requires flexibility, including in how I approach rest. I continue learning what my body needs while reminding myself that asking for professional guidance is a sign of wisdom, not weakness.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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