Excessive Daytime Sleepiness and Ataxia: Causes and How To Manage It

Excessive daytime sleepiness (EDS) is a condition in which you have trouble staying awake during the day. It usually happens every day or almost every day, even if you think you got enough sleep or slept well. For some people, EDS can be a symptom of ataxia.

If you find yourself struggling to stay awake during the day — or falling asleep when you don’t want to — and this keeps happening regardless of how much or how well you sleep, you may have EDS along with ataxia. Getting a diagnosis can help you and your healthcare provider better understand what’s causing your symptoms and explore treatment options to help you feel better and improve your quality of life.

Is Excessive Daytime Sleepiness the Same as Fatigue?

Excessive daytime sleepiness, sometimes called daytime sleepiness, is not the same as fatigue or just feeling tired. Tiredness is a common feeling of low energy or sleepiness that usually improves with rest or a good night’s sleep. Fatigue is a deeper, ongoing sense of physical or mental exhaustion that doesn’t always get better with rest.

EDS, fatigue, and tiredness can be related, but they are different experiences:

• People experiencing fatigue may feel drained, weak, or slowed down, but they are usually able to stay awake.
• People living with EDS often struggle to stay awake or may fall asleep unintentionally, even when they are trying to stay alert.

In some cases, fatigue can contribute to EDS, and some people may experience both at the same time.

In addition to feeling sleepy, EDS can make it easier to get irritated and harder to focus, remember, learn, or make decisions. It may also slow down your reflexes and make you more likely to take risks or have accidents (for example, while driving or using machinery).

Connecting Excessive Daytime Sleepiness and Ataxia

Excessive daytime sleepiness (EDS) has been linked to several hereditary ataxias (genetic conditions that affect coordination and balance).

Ataxias known to be associated with EDS include:

• Spinocerebellar ataxia 1, 2, 3, and 10
• Chronic progressive external ophthalmoplegia
• Neurogenic muscle weakness, ataxia, and retinitis pigmentosa
• Kearns-Sayre syndrome
• Leigh syndrome (also called Leigh disease and subacute necrotizing encephalomyelopathy)

Some other hereditary ataxias are linked to conditions that can cause EDS — such as restless legs syndrome (RLS, an urge to move the legs, often at night) and obstructive sleep apnea (OSA, a condition where breathing repeatedly stops and starts during sleep) — or to poor sleep overall. These ataxias include:

• Spinocerebellar ataxia 6 and 13
• Fragile X-associated tremor/ataxia syndrome
• Friedreich ataxia (FA or FRDA)
• Joubert syndrome

Researchers understand more about some types of ataxia than others. For example, spinocerebellar ataxia 3 has been linked to both fatigue and daytime sleepiness, but ataxia researchers don’t yet fully understand why this happens.

Friedreich Ataxia and EDS

Friedreich ataxia affects the dorsal root ganglia (clusters of nerve cells near the spine that help carry sensory signals from the body — like touch from your fingers and toes — to the brain). Damage to these nerve cells can disrupt how the nervous system processes signals.

Researchers don’t fully understand how the dorsal root ganglia are connected to sleep. However, one small study suggests that stimulating these nerve cells may help improve sleep. More research is needed to confirm this finding.

Ataxia Medications and Excessive Daytime Sleepiness

Some medications used to manage ataxia symptoms can cause excessive daytime sleepiness as a side effect. For example, muscle relaxants (medications that help reduce muscle spasms) are often prescribed for people with ataxia. These drugs can make you feel sleepy, especially depending on when you take them.

Treatments can vary depending on the type of ataxia. One example is omaveloxolone (Skyclarys), a medication approved to treat Friedreich ataxia. Fatigue is listed as a common side effect of this drug. Although fatigue is different from EDS, it may still make you feel sleepy during the day.

Many medications used in ataxia care can have fatigue or sleepiness as side effects. If you notice ongoing daytime sleepiness after starting a medication, talk with your healthcare provider. They can help you review your medications and decide whether any changes are needed.

Other Possible Causes of EDS

Excessive daytime sleepiness can have many possible causes beyond ataxia. These may include:

• Chronic lack of sleep or low-quality sleep
• Lifestyle factors, such as low physical activity or smoking
• Sleep disorders, including OSA, RLS, or circadian rhythm disorders (problems with your body’s internal clock)
• Health conditions, such as mental health conditions, autoimmune diseases (when the immune system attacks the body), or neurological disorders (conditions affecting the brain and nerves)
• Medications that list sleepiness or fatigue as side effects

5 Ways To Manage Excessive Daytime Sleepiness

There are a few steps you can take to manage excessive daytime sleepiness while living with ataxia. These strategies may not fully stop EDS, but they can help address possible causes and improve how alert you feel during the day.

1. Diagnose and Treat Any Sleep Disorders

If you treat conditions that affect your sleep, you may sleep better and feel less sleepy during the day. Because EDS is linked to sleep disorders like OSA and RLS, treating these conditions may help improve your sleep.

If you aren’t getting good sleep regularly, talk to your healthcare team. They may recommend a sleep study (a test that monitors your sleep overnight) or other tests to better understand what’s affecting your sleep.

2. Review Your Medications

Ask your healthcare provider whether any medications you take could be contributing to daytime sleepiness. They may recommend adjusting when you take a medication or considering other options. Work with your provider to find an approach that fits your needs.

3. Track Your Sleep and Symptoms

If you’re not sure what’s causing EDS, try tracking your sleep and symptoms for about two weeks. Write down your nighttime sleep, fatigue, and daytime sleepiness. You can also note details like when you take medications or any nighttime symptoms. This information can help you and your healthcare provider identify patterns and possible causes.

4. Build Habits That Support Better Sleep

Your daytime and evening habits can affect how well you sleep at night. These steps may help:

• Avoiding caffeine, alcohol, and nicotine close to bedtime
• Getting physical activity earlier in the day, if possible
• Limiting fluids a few hours before bed to reduce nighttime wake-ups
• Eating lighter meals in the evening and avoiding eating right before bed
• Limiting daytime naps when possible

If you do need to nap, try to keep naps under 30 minutes and avoid napping late in the day.

5. Create a Consistent Bedtime Routine

Your bedtime routine can also affect your sleep quality. Some people find that practicing good sleep habits (often called “sleep hygiene”) helps. You might try:

• Avoiding screens, including TVs, phones, and tablets, in the hour before bed
• Going to bed and waking up at the same time each day
• Keeping your bedroom cool, dark, and quiet
• Using relaxation techniques, such as guided meditation, to wind down

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