Josefina has parietal lobe epilepsy, a rare form of the condition which has had many strange symptoms during her life, one of which she calls a “swarm of bees in my head”. It starts as a low dull hum while she is asleep, then gets louder and sharper, until it wakes her up. This, along with medication she is taking for her epilepsy, has “ruined my sleep”, Josefina says. “My experience with nocturnal seizures was quite confusing and lonely at first”.
The link between epilepsy and sleep is different for everyone. Some people’s seizures happen during sleep or shortly before or after. For others, a lack of sleep can trigger seizures, as it does for Josefina: “If I’m stressed to the point where distraction is impossible, it will show in my sleep. It will be very restless and interrupted by spasms.” What we do know is that, for people with epilepsy, poor sleep is yet another thing that can disrupt their lives and dreams.
Epilepsy and sleep may have a knotty relationship, but its only through research that we can hope to untangle it. By understanding the link between the two, we can find ways to make sure everyone’s days and nights are uninterrupted by epilepsy.
In his research, Prof Andrew Bagshaw at the University of Birmingham is using pioneering brain scanning techniques that can measure both electrical activity and blood flow in the brain. The hope is that studying how sleep and epilepsy affect the brain will lead to targeted and more personalised treatments for people. In his blog later this month, he will discuss the links between neuroimaging, epilepsy, and sleep.
Childhood is a crucial time in the development of the brain and its functions, and sleep is when much of this development happens. However, research suggests that poor sleep in childhood (due to epilepsy or other reasons) can delay this progress.
Dr Samantha Chan at the Great Ormond Street Institute of Child Health is studying the relationship between epilepsy, sleep, and brain function in children. In her blog later this month, Samantha will discuss this work, and how sleep could be exploited as a ‘treatment’ to improve brain function in children with epilepsy.
Josefina knows more about her epilepsy than anyone, but there’s still a lot she’s keen to understand. “Education around epilepsy is still really, really bad – bad enough for people with epilepsy to not understand their own neurological events,” she says. Her hope is to collaborate with researchers to help us all discover more about the condition, including its links with sleep. Next week on the Research Blog, Josefina will explain the complicated relationship she has with her epilepsy.
“With the number of dangers that people experience from epilepsy, it is tempting to ignore epilepsies that don’t sound as bad, but I don’t want to feel so lost anymore.”
Keep an eye on the Research Blog during September, where Josefina, Andrew, and Samantha will be sharing their thoughts on sleep and epilepsy. They’ll also be answering your questions later this month in our Research Quick Fire Questions. Sign up to our E:Bulletin to be notified of when you can register for the session. Got a burning question on sleep and epilepsy? Let us know by replying to this email!