International study on sleep disruption in people with alternating hemiplegia in childhood

Sleep issues affect many people and are a common topic among people with epilepsy but the effects might be worse in difficult-to treat, complex and rare disorders, such as alternating hemiplegia in childhood (AHC).

A new international study, supported by the Epilepsy Society, demonstrated sleep disturbances in a group of children and adults with AHC. Researchers from the charity’s Chalfont Centre for Epilepsy included Professor Sanjay Sisodiya, Director of Transformation, Simona Balestrini and Francesco Fortunato.

Alternating hemiplegia is a rare neurological disorder with recurring episodes of paralysis affecting one or both sides of the body.

The conventional understanding of the condition suggests that symptoms immediately disappear when a person is asleep. However, results of the study challenge this assumption and indicate that individuals with classic AHC may experience paroxysmal (increase in symptoms or seizures) attacks from both wakefulness and sleep. 

Approximately one half of the participants reported sleep disturbances which were described as persistent and disruptive. The researchers collected data around the number of times people had their sleep disturbed and its impact on the next day. Individuals or their carers described the effects and how it disrupted their regular routine. Some participants reported taking medications to address their sleep issues. 

Using the Pittsburgh Sleep Quality Index (PSQI) which is the standard tool for assessing sleep over a period of one month, the study found that participants had higher scores indicating poorer sleep quality. The researchers also found that people with AHC might be vulnerable to increased temperatures and the impact of climate change. 

The researchers collected detailed information from the participants and their families. This ‘lived experience’ and the open comment section gave a voice to the people with AHC and their caregivers. 

While recognising that the study has several limitations due to it being a small sample size of 54 participants, it did identify the possible effect of benzodiazepine and antiseizure medication. The researchers encourage the medical community to explore the unmet needs of rare neurodevelopmental disorders such as AHC. 

You can read the paper at: Characterization of Sleep in Alternating Hemiplegia of Childhood: An International Survey - PMC