Epilepsy, Risk & SUDEP

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We all live with varying degrees of risk every day and these risks differ from person to person. Epilepsy, just like other long-term health conditions such as asthma and diabetes, has risks of it’s own and at the extreme end of the spectrum is loss of life.

Many people do not realise that epilepsy can be potentially life-threatening, and someone with epilepsy is three times more likely to die prematurely than someone without epilepsy however strategies can be put in place to minimise the risk. There are many reasons for this, including accidents and injury, drowning or suicide but the most common epilepsy-related cause of premature death is Sudden Unexpected Death in Epilepsy (SUDEP), which is the sudden, unexpected, death of a person with epilepsy, with or without evidence of a seizure and no other cause is found.

It is estimated that 50-100 Australians each year die[1] from SUDEP and sadly, SUDEP often occurs in young, otherwise healthy individuals.  Our thoughts are with those who have lost someone related to epilepsy, but we know thoughts aren’t enough.

Dying is not an easy topic to talk about, but premature, sudden death is devastating. Having an awareness of, knowing the risks and talking about it, and knowing what to do in the case of a seizure, can help prevent these unnecessary deaths.

Sudden Unexpected Death in Epilepsy (SUDEP)[2] is an uncommon condition where a person with epilepsy dies suddenly and prematurely, and no reason for death can be found. It predominantly occurs overnight and is often not witnessed. There may sometimes be obvious signs a seizure has happened, though this isn’t always the case.

SUDEP is one of the leading causes of death related to epilepsy yet still poorly understood.

For adults the risk is low. In one year, SUDEP typically affects 1 person in 1000 who have epilepsy.

For children with epilepsy the risk of SUDEP is rare. In one year, SUDEP typically affects 1 child in 4500 who have epilepsy.

SUDEP is more common than SIDS, but far fewer people know about it.

A leading risk factor for SUDEP is having tonic clonic seizures and this risk is likely to increase if the seizures happen at night or when asleep. The more frequent the tonic clonic seizures, the higher the risk.

People with absence or myoclonic seizures are not known to have an increased risk for SUDEP. However, people who have these seizures may be at risk for tonic-clonic seizures if they do not take medication as prescribed.

People who do not have tonic clonic seizures are still at risk of SUDEP.

There are some recognised risk factors and some suggested risk factors for SUDEP.

The main risk factors are:

  • Tonic clonic seizures
  • Poorly controlled or frequent seizures
  • Sleeping alone

Although the evidence is low, other suggested risk factors may include

  • A history of seizure related injury
  • A history of status epilepticus and/or prolonged seizures
  • Seizures during sleep (nocturnal seizures)
  • Not taking medication as prescribed
  • Medication changes
  • Alcohol or substance abuse
  • Also having depression or other psychiatric illness
  • Presence of intellectual disability
  • Pregnancy
  • Unclear seizure frequency or treatment history
  • The person has had epilepsy for more than 15 years
  • The seizures begin at less than 16 years of age
  • The person is male gender, aged 20-40 years

Although SUDEP is more common in people with frequent seizures it has also occurred in people who have had very few seizures.

It is important you discuss your risks and concerns with your doctor who can help assess your risk and discuss steps to reduce them. This can be done using the SUDEP and Seizure Safety Checklist

Of course, seizure risks can be lessened. The most important step is to try to control seizures or at least reduce how often they happen. There is plenty of safety information on our website with ideas to reduce your risk of injury.

Although 1 in 3 people with epilepsy continue to strive for seizure control, a few actions can help reduce risks such as seeing an epilepsy specialist, taking medication as prescribed and discussing a treatment review or changes if needed.  Sometimes other treatment options may be possible such as surgery or vagus nerve stimulation, if they are suitable for your particular type of epilepsy. See Taking Action Against Risk

Lifestyle choices can also influence risk. Have a look at our self-management factsheet to help with lifestyle choices.

Video Case Study

SUDEP and Seizure Safety Checklist [4]

Epilepsy, like other long-term conditions such as asthma or diabetes comes with certain risks. If left unchecked these can become very serious.

“Since sudden death can happen to anyone with epilepsy, doctors need to discuss this rare possibility with people with epilepsy and their families,” Professor Orin Devinsky, Director NYU Comprehensive Epilepsy Centre, says. “Education of patients and caregivers would be critical to avoid potential risk factors…” [5]

Risks associated with seizures need to be discussed, no matter what type of epilepsy you have. It is important to be informed and ask questions. This way you can understand your risk, learn how to stay healthy, work to control your seizures, and reduce your risk as much as you can.

The SUDEP and Seizure Safety Checklist is an evidence based tool designed for doctors and epilepsy nurses as a clinical tool to support risk communication with their adult patients with epilepsy, and to help develop a plan to assess and reduce the risks.

It came about after a large UK study over 9 years showed that 80% of people with epilepsy who died suddenly had not been in contact with specialist services in the year prior, and 90% had a worsening of seizures in the 3-6 months prior to the death. One half had a record of alcohol misuse, and a quarter had been taking drugs to treat depression or anxiety. This highlighted the fact that there may be modifiable risk factors that can be acted upon to avoid SUDEP.

A common theme was the lack of awareness and the underestimation of risk, indicating that risk assessment and risk management are fundamental in reducing avoidable deaths.

SUDEP Action Day is a special day which brings organisations and people together to raise awareness of SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy deaths worldwide. It occurs annually on the third Wednesday in October.

Not everyone with epilepsy is aware of, or told about SUDEP and epilepsy risks, which can put them in danger of worsening seizures, injury or of dying prematurely. Some health professionals worry that discussing these risks could frighten their patients. But these negative outcomes can be prevented for many people with epilepsy; and openly discussing these risks allows them to make informed choices about treatment and lifestyle and helps them take steps to reduce any risks.

People with epilepsy & their families WANT to be told about SUDEP and epilepsy risks. Many bereaved families were NOT told about SUDEP & wish that this vital information had been shared as it might have saved their loved one’s life.

For SUDEP Action Day 2023 we want people to talk #MySafetyMatters

Remember, with information there’s conversation…!

 

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References

[1] https://www.ilae.org/congresses/webinars/sudden-unexpected-death-in-epilepsy-sudep-how-translational-research-on-epilepsy-is-finding-answers  Accessed 15 August 2022

[2] Harden, C., Tomson, T., Gloss, D., Buchhalter, J., Cross, J. H., Donner, E., French, J.A., Gil-Nagel, A., Hesdorffer, D.C., Smithson, W.H., Spitz, M.C., Walczak, T.S., Sander, J.W., & Ryvlin, P. (2017). Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Epilepsy currents, 17(3), 180-187.

[3] Hesdorffer, D.C., Tomson, T., Benn, E., Sander, J.W., Nilsson, L., Langan, Y., Walczak, T.S., Beghi, E., Brodie, M. J., Hauser, A. (2011), Combined analysis of risk factors for SUDEP. Epilepsia, 52: 1150-1159. doi:10.1111/j.1528-1167.2010.02952.x

[4] https://sudep.org/checklist-development Accessed 15 August 2022

[5] Verducci, C., Hussain, F., Donner, E., Moseley, B.D., Buchhalter, J., Hesdorffer, D., Friedman, D., & Devinsky, O. (2019) SUDEP in the North American SUDEP Registry 2019 Neurology Jul, 93 (3) e227-e236; DOI: 10.1212/WNL.0000000000007778