What are Nocturnal Seizures?

What are nocturnal seizures?

What does your bed mean to you? For many people, it’s a place of slumber and relaxation. And night time is a place of rest. While for others it can be more stressful. Seizures at night not only disrupt your sleep, but can impact your whole life.

What happens during a night seizure?

Seizures at night, or nocturnal seizures, have similar effects on the body as tonic-clonic seizures. Nocturnal seizures happen while a person is asleep. Most nocturnal seizures are tonic-clonic which means the body stiffens, jerks and all consciousness is lost. They can cause involuntary waking, urinating and shaking. In fact the Journal of Neurology, Neurosurgery and Psychiatry reported that up to 45% of people with epilepsy have most of their seizures when they are asleep.

How do they affect daily life?

Night seizures affect everyone differently. With a combination of good diagnosis, meds and tools, many people can manage the impact of their seizures at night. However, it's not just sleep that night seizures interrupt, they affect the daylight hours too – of both the person with epilepsy and the families of those caring for them.

For those still at school, nocturnal seizures can have a real impact on learning, even if seizures never occur in the classroom. Make sure that the school is aware of how they can best support you and that it is written down in your Individual Healthcare Plan.

Lisa O’Brien, Head of Health and Epilepsy Nurse Consultant, explains “Often the person who’s had the night seizure doesn’t realise it’s happened. They feel aches from the muscle spasms, headaches and dizziness and it’s not unusual for their teeth to move as a result of extreme spasms.”

What causes night seizures?

As with all seizures, it can be hard to determine what causes them. Nocturnal seizures are no exception. Fatigue can play a big part. Physical and mental exhaustion can disrupt sleep patterns, causing the body to be more tired and prone to a night seizure. Sleep disorders can also increase the chances of a night seizure, conditions like narcolepsy, sleep apnoea and night terrors for example, all interrupt sleep and can be a risk. If you have a sleep disorder, it’s worth talking to your epilepsy doctor about the likelihood of a night seizure.

Symptoms to be aware of

It’s important to bear in mind that night seizures may not pre-warn you with any symptoms. Sometimes this can just be a headache or a bruise found when you wake up. In other cases, the following may be a sign of a night seizure, a person may:

make unusual noises or cry out just before muscles tense
go rigid
fall out of bed
bite their tongue
wake suddenly without cause
jerk or twitch involuntarily
wet the bed
be difficult to wake
be confused when they wake

• Nocturnal Frontal Lobe Epilepsy (NFLE):

Although this can occur at any age, NFLE appears most commonly in childhood. With NFLE almost all seizures are nocturnal, however when they wake, those with NFLE may have no memory of the seizures.

• Benign Epilepsy with Centrotemporal Spikes (BECTS):

Most commonly diagnosed in children aged between 3 -13, night seizures affect approx. 70% of children with BECTS. Seizures often occur immediately after falling asleep or just before waking.

• Panayiotopoulos Syndrome:

This can appear in children as young as 1 year old up to those aged 14. Night seizures occur in approx. 70% of sleep with 13% taking place just as the child wakes up. Most children diagnosed with panayiotopoulos syndrome experience less than five seizures pre-remission.

Treatment and support

Your epilepsy doctor may review your meds for side-affects. They’ll work with you to find the anti-seizure medication (ASMs) that help control your night seizures. They may also recommend a new night routine to help reduce stress and allow your body to have the amount of sleep it needs. This may involve going to bed at certain times and waking at the same time each day (even at the weekends). As well as your doctor, you can also rely on us to help.

Parent perspective

Night seizures can cause stress and can impact the whole family. Even after a diagnosis, night seizures can be very unpredictable. Lisa explains “Everything appears normal at first, just like any other night. Until they hear their child making noises they’ve never heard before. They go into their room and find their child like they’ve never seen them before. They may look like they are dying. They lose colour, collapse, contort, shake and foam at the mouth. It’s a very scary and traumatic experience. One parents will re-live again and again. While the child doesn’t remember anything the next day, just like sleep-walking, the parents are traumatised.”

Nocturnal seizures have been associated with an increased risk in Sudden Unexpected Death in Epilepsy (SUDEP), so it’s understandable that this is a traumatic experience for a family.

“For the families, night seizures mean undergoing a series of tests before specific meds can be allocated and trialled to find the most effective. Sleep routines have to change as well as bedding and equipment. Some children will need special pillows and blankets that reduce the risk of suffocation. They may also need to wear wrist monitors to measure their pulse and send alerts to parents. Alternatively, other monitors record movement and can alert parents to a potential seizure.”

So, what can I do about it?

Just as with epilepsy, there is no ‘one size fits all’ approach for nocturnal seizures, however, there are things you can do to minimise seizures and the impact they have. We asked parents what advice they would give to other parents going through the same thing, and here are the top tips suggested. We also know that lots of parents choose to monitor their children at night using technology, and whilst there isn’t one monitor that works for everyone, here are some of the options available. To carry on the conversation, head to The Hub to speak to other people in your position.

What are Nocturnal Seizures?