Idiopathic hypersomnia (IH) is a neurological condition characterized by excessive daytime sleepiness and difficulty waking up, even after extended sleep. Unlike other sleep disorders, increasing sleep time may not relieve drowsiness for people with IH. Living with IH can impact various aspects of life, including physical, mental, and emotional health. People with IH may experience mental or emotional distress, including anxiety, depression, and irritability, loss of appetite, nightmares or sleep paralysis, hallucinations, headaches or dizziness, and difficulty remembering things or organizing thoughts. These effects can impact relationships, work or school performance, and safety.
While there is no cure for IH, a combination of medication and lifestyle changes can help manage symptoms and improve overall well-being. This article explores various lifestyle adjustments, with a focus on dietary recommendations, to help individuals cope with the effects of excessive sleepiness and improve their quality of life.
Understanding Idiopathic Hypersomnia and Its Impact
Idiopathic hypersomnia is a condition where a person feels excessively sleepy during the day. Some people with hypersomnia regularly sleep between 9 to 11 hours per day or more and still feel tired. A variety of circumstances can cause hypersomnia, including chronic sleep deprivation, health conditions like cancer or depression, and sleep disorders like narcolepsy or obstructive sleep apnea. There are often multiple factors contributing to excessive daytime sleepiness.
The main objectives of treatment for people with hypersomnia are to alleviate symptoms and improve their quality of life. Planning treatment begins by determining the cause of hypersomnia. Medications for hypersomnia are used in combination with behavioral changes to promote alertness and reduce daytime sleepiness. The medication prescribed generally depends on whether symptoms are due to a sleep disorder or a different underlying health condition. Hypersomnia caused by a sleep disorder is called primary hypersomnia, while hypersomnia caused by another health condition is called secondary hypersomnia. Primary hypersomnias include excessive sleepiness caused by narcolepsy type 1 and 2, Kleine-Levin syndrome, and idiopathic hypersomnia.
The Role of Diet in Managing IH Symptoms
Food provides nutrients that support all aspects of health, including sleep. Research has shown that eating more nuts, legumes, fruits, and unsaturated fats is associated with better sleep quality. Consumption of a diet high in saturated fat has been associated with daytime sleepiness.
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Whole-Food Plant-Based (WFPB) Diet
A whole-food plant-based (WFPB) dietary pattern, which is low in saturated fat, has been shown to be beneficial in a variety of health conditions. One study assessed the effect of a short-term (21 days) WFPB diet intervention on daytime sleepiness in 14 patients with obstructive sleep apnea (OSA). The study found a mean decrease of 3.8 points on the Epworth Sleepiness Scale (ESS) after switching from a standard Western diet to a WFPB diet.
Low-Glycemic Diet
Choose a low-glycemic diet - eat less sugar and fewer refined carbohydrates, like white bread and white potatoes.
Timing of Meals
People with hypersomnia may also consider adjusting the timing of meals or snacks. Some PWH find that a full stomach makes them feel more sleepy. If this is true for you, think about eating more frequent, smaller meals throughout the day. Making sure you don’t get too hungry and exhausted at the same time may be your most important goal.
Other Lifestyle Adjustments to Cope with IH
In addition to dietary changes, several other lifestyle adjustments can help manage IH symptoms:
Maintaining a Regular Sleep Schedule
Having a daily sleep schedule is often a core component of IH care plans. This means going to bed and waking up at the same time regularly. Irregular sleep schedules are associated with disrupted and insufficient sleep, one of the most common causes of hypersomnia.
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Avoid activities late at night that may delay your bedtime. It may also help to avoid taking naps later in the day, which may make it harder to fall asleep at night and actually worsen drowsiness.
Strategic Napping
While short naps may be helpful for people with other types of sleep disorders, such as narcolepsy, many people with IH find that their naps tend to be long and hard to wake up from. This can cause grogginess and disorientation.
If you do find that you need naps during the day, developing a structured schedule that includes short naps as needed may help improve your ability to complete daily tasks. A sleep therapist may be able to help with this.
Some PWH feel somewhat refreshed after taking a nap. Your level of refreshment, including how long it lasts, may depend on how long you nap, when you nap, and how much sleep inertia you have. Try different nap times and lengths, which may range from 20 minutes to a couple of hours. The decision of whether or not to include a daytime nap in a sleep schedule may depend upon the cause of a person’s hypersomnia and whether they are able to limit nap length.
Mindful Use of Caffeine
Many people with IH report using caffeine to manage their drowsiness and get through the day. While not a cure, this can provide temporary relief that helps you take care of important tasks that need to be done. Caffeine is a stimulant that increases the heart rate and activates the central nervous system, making a person feel energized and alert. in the brain.
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However, be sure to avoid using caffeine at times when it may disrupt your sleep schedule. Limiting caffeine use to the mornings or early afternoons may help avoid problems falling asleep at night.
It’s also important to be mindful of how much caffeine you are using. The Food and Drug Administration states that 400 milligrams (mg) per day (the amount typically found in 4 to 5 cups of coffee) is a good upper limit.
Avoiding Alcohol
Alcohol can disrupt signaling in the brain, including many of the signals that regulate sleep-wake cycles. But your body metabolizes the alcohol while you sleep, causing the levels in your blood to change, which can lead to dysregulation of your body’s natural sleep signals. Some people rely on alcohol to fall asleep. for some people.
Reviewing Medications
Some types of medications for other conditions can cause drowsiness and may worsen the symptoms of IH. These include both over-the-counter and prescription medications, such as:
- Antihistamines
- Antidepressants, antipsychotics, and anticonvulsants
- Blood pressure medications
- Muscle relaxers
- Pain medications
It’s important to take your medications when you need them. Stopping medications without a backup plan can lead to health complications that may worsen IH symptoms. Talk with your healthcare team about possible alternatives if your medications contribute to your daytime drowsiness. If medications used to treat another health issue are causing excessive daytime sleepiness or periods of prolonged sleep, a doctor may adjust the original treatment plan. This may require changing the type, dose, or timing of a medication that is causing side effects.
Prioritizing Safety
Excessive daytime sleepiness may affect your ability to drive and could lead to serious injury or harm. Avoid driving or operating heavy machinery when you are tired. Experts estimate that excessive daytime sleepiness contributes to 1 in 5 car accidents.
If you need to drive, try to plan your day around when you are most alert, and be sure to take any medications that your doctor has prescribed to help prevent drowsiness.
Addressing Mental Health
A survey study showed that up to 92% of respondents with IH reported concerns related to their mental health. IH can negatively affect one’s overall quality of life. Difficulty concentrating, loss of interest in regular activities, irritability, and social isolation are especially common. Talk to a therapist: Cognitive-behavioral therapy (CBT) focuses on recognizing negative or unhealthy behaviors and thought patterns, and learning how to replace them with more positive ones.
If your IH symptoms are impacting your mental health, your healthcare team can help connect you with resources and professionals who may be able to help. Find support: Support groups and online communities or message boards can help address the emotional burden of hypersomnia.
Seeking Assistance with Daily Activities
Experiencing excessive drowsiness or difficulty waking up can make it difficult to complete your day-to-day activities. This can be especially troubling for people with IH who also have caregiving responsibilities, like caring for children or aging parents. Keeping house, caring for children, and other everyday tasks are difficult for everyone but can be even more so if you have a chronic condition. KC Davis, a licensed therapist, created Strugglecare for people like herself who find it a challenge to keep up with the demands of daily life.
Don’t be afraid to ask for help when you need it. If friends or family aren’t available, professional resources may be available to help with certain daily tasks.
Educating Others
People who don’t know about IH may make incorrect assumptions about the work ethic or commitment capabilities of a person with IH. It may be challenging to meet expectations at work or school. Request accommodations: Educate your work colleagues and your family on your condition so they can better understand and be supportive.
Mind-Body Practices
Meditation may help your brain rest and lower sleepiness. It can also improve your mindfulness, which can help with coping and managing stress. Sometimes meditation can lead to sleep, so it’s a good idea to be prepared for a nap. If you don’t want to nap, try movement meditations such as yoga or mindful walking. A good meditation resource is Full Catastrophe Living, Jon Kabat Zinn’s book about an 8-week meditation program started at UMass medical center. There are many local programs based on this book and some online programs too (such as Palouse Mindfulness, which is free). Calm the body and mind: Leave time before bed to help yourself transition from a state of alertness to sleepiness.
Physical Activity
Exercise or staying busy with movement may help improve wakefulness while you’re active and sometimes also afterward. For example, you can try using a treadmill, a stationary bike, or an under desk bike during Zoom calls or while you try to read. Implementing a new exercise routine may be an effective method for relieving symptoms of hypersomnia. Exercise early in the day: Exercise is energizing, so doing so too late at night may impair sleep. People with hypersomnia should also consider the timing of daily exercises.
If you have sleep disturbances, research shows that regular exercise can improve sleep. Try not to get discouraged if a specific type of exercise doesn’t work for you. It may take some time to find the right fit.
Optimizing Sleep Environment
Optimize your bedroom: Keep the bedroom dark, quiet, and comfortably cool. Blocking nocturnal blue light for insomnia: A randomized controlled trial.
Avoiding Shift Work
People with hypersomnia may want to avoid working late at night or overnight. can disrupt a person’s circadian rhythms and are associated with hypersomnia.
Meal Planning
Many PWH struggle with decision-making and low energy and wakefulness, so meal prep and planning may be difficult for you. Coping skills can help, such as making easy meal plans that you can repeat, and having ready-made meals available.
Service Animals
Professionally trained service animals may help PWH. Owning and caring for any animal is a major commitment and expense, which is usually not covered by health insurance.
Tracking Symptoms and Seeking Professional Guidance
Not everyone’s Idiopathic Hypersomnia is the same. It’s important that your treatment plan is tailored to your own unique combination of symptoms. Your doctor may suggest different approaches to help manage your Idiopathic Hypersomnia. These include following good sleep habits, diet and exercise, working with a therapist or counselor, and taking a prescription medication.
For most, Idiopathic Hypersomnia is a lifelong condition, and symptoms may change over time. Tracking your symptoms on an ongoing basis can help you and your doctor better evaluate, understand, and address these changes. Tracking your sleep, medicines, and activities can help you find what makes your symptoms better or worse as well as patterns across the day or week. Your journal may give you ideas on how to change your medicines or better organize your day. By sharing your journal with your doctor or therapist, they may be able to help you find patterns and change your plan of care.
Use these 2 useful tools to help you monitor your Idiopathic Hypersomnia symptoms over time:
- The Epworth Sleepiness Scale (ESS) measures your level of daytime sleepiness.
- The Idiopathic Hypersomnia Severity Scale (IHSS) was specifically designed to measure the frequency and severity of your Idiopathic Hypersomnia symptoms.
Be sure to ask your doctor about these tools and discuss your results together. Looking for a doctor with experience managing Idiopathic Hypersomnia?
Medical Treatment for Idiopathic Hypersomnia
Make sure you share with your doctor all of the Idiopathic Hypersomnia symptoms affecting you-excessive daytime sleepiness (EDS), sleep inertia, brain fog, long unrefreshing naps, and long sleep times-so that together, you can find the right medication. Some kinds of medications-such as stimulants-are used to treat daytime sleepiness in other conditions. Doctors will sometimes prescribe them for use in Idiopathic Hypersomnia, too. This is called “off-label” use. That said, remember that Idiopathic Hypersomnia has multiple symptoms, beyond just feeling sleepy during the day. So be sure to share with your doctor all of the ways Idiopathic Hypersomnia may be affecting you. Hypersomnia caused by a sleep disorder is called primary hypersomnia, while hypersomnia caused by another health condition is called secondary hypersomnia. Primary hypersomnias include excessive sleepiness caused by narcolepsy type 1 and 2, Kleine-Levin syndrome, and idiopathic hypersomnia.
Learn about an FDA-approved treatment option for Idiopathic Hypersomnia that might be right for you. Medications for hypersomnia are used in combination with behavioral changes to promote alertness and reduce daytime sleepiness. The medication prescribed generally depends on whether symptoms are due to a sleep disorder or a different underlying health condition.
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