As part of the Ataxia UK 2025 virtual annual conference, Emma Foster, Clinical Nurse Specialist at the Sheffield Ataxia Centre (pictured to the left) gave a talk on managing sleep and fatigue in ataxias.
Emma introduced the session by discussing how a range of ataxia symptoms can be impacted by sleep disturbances, including balance, walking and fatigue. In a recent patient survey conducted by the Sheffield Ataxia Centre, 68% of ataxia patients said that fatigue was their most troublesome symptom.
Emma gave an overview of the main ataxia symptoms that can affect sleep. These include the following:
- Needing to go to the toilet at night
- Tremor
- Spasticity/ rigidity
- Pain
- Low mood/ anxiety
Emma listed some of the main sleep disorders that can occur in people with ataxia. These are:
- Insomnia
- REM-sleep behaviour disorder (can be seen in SCA2 and multiple system atrophy)
- Obstructive sleep apnoea
- Restless leg syndrome
- Daytime sleepiness
Sleep and fatigue can be assessed through understanding bedtime routines, caffeine and alcohol consumption, overnight behaviours, leg sensations and mood. These can be assessed through questionnaires. Then patients may be referred to a specialist, e.g., to a respiratory specialist if sleep apnoea occurs, or to a specialist sleep clinic if you can get a referral to one local to you.
Emma went on to provide some helpful ways to manage fatigue symptoms when living with ataxia:
1. Maintaining a good sleep routine:
- Go to sleep and wake up at a similar time every day
- Look at sleep hygiene, aiming to limit TV and screen use before bedtime
- Create good sleeping conditions, e.g., cool temperature, dark room etc
2. Manage lifestyle factors that can impact sleep:
- Avoid caffeine after midday
- Limit alcohol and nicotine consumption, especially close to bedtime
- Avoid eating heavy meals close to bedtime
- Limit daytime naps. Have them for 20-30 minutes and no longer, and not in the late afternoon or evening
- Exercise earlier in the day and not close to bedtime
- Reduce fluid intake before bedtime to help limit the need to get up to go to the toilet overnight
- Try guided meditations to help improve relaxation
3. Monitor sleep and fatigue
- Keep a sleep diary to find out which factors are affecting sleep. Can do this over 2 weeks and then bring it to the clinic
4. Look after your mental wellbeing:
- Cognitive Behavioural Therapy for insomnia has shown some positive evidence in Multiple Sclerosis, Parkinson’s and Traumatic Brain Injuries. Self-referral for this is an option. The book ‘Overcoming insomnia and sleep problems’ by Colin Elspie can be useful
- Therapy and medications for anxiety and depression may help. Some medications can negatively impact sleep, so it is worth checking their side effects before taking them
- Consulting an occupational therapist to help manage fatigue if it is affecting everyday life significantly can be a good idea
If you are experiencing fatigue or sleep difficulties that are significantly affecting your daily life, consult your GP.
