SUDEP Action

Making every epilepsy death count
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What is SUDEP?

What is SUDEP? 
Sudden Unexpected Death in Epilepsy (SUDEP) is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. It is not a condition or disease, but rather a useful category to aid research and monitoring of deaths.


Why does SUDEP happen?
Researchers are still investigating the causes of SUDEP and it is unlikely there is a single cause.  During seizures, people may often see a change in their breathing or heart rhythm.  Normally, this is not a problem, but if more serious changes occur, for example, a major drop in oxygen levels in the blood, then this might be a trigger for SUDEP.

Seizures may also affect the brain’s influence on breathing and the heart.  Another possibility is that there is a genetic link between seizures and heart rhythm abnormalities. Advances in research mean that we are getting closer to identifying the critical risk factors.
 

What is my risk of SUDEP?
The cause(s) of SUDEP are not known.  Like cot deaths, no one can say whether or not a person is individually predisposed to SUDEP.  We need research in this area.

Today we do know that SUDEP happens and we have evidence on different groups of people with epilepsy.

In the general population of people living with epilepsy the risk is 1:1000 (similar to smoking 10 cigarettes a day), but:

  • People with absence or myoclonic seizures are not known to have increased risk for SUDEP.
  • The risk increases if you have frequent convulsive seizures.  The highest risk group is people who are being considered for epilepsy surgery and in specialist centres. The risk varies between 1:50 to 1:300.

SUDEP can occur in individuals with infrequent as well as severe epilepsy. Even if you’re seizure free you should still continue taking your medication and have regular medical reviews.

Although more work is needed on risk factors, the main risk factor is clearly established and other risk factors are known.   All risks are in the end individual & should be discussed with your health professionals. You may be in a high risk group but may have options to reduce that risk, e.g. successful surgery.  You may be at low risk but your treatment or life-style choices may expose you to greater risk, e.g. deciding to stop medication against advice.

Families can report information about epilepsy deaths to The Epilepsy Deaths Register to help us discover more about SUDEP and other epilepsy deaths.

 

Does SUDEP occur in children?
SUDEP is not common in the under 16 age group and is rare in children who do not have other physical or learning disability.

Risk of SUDEP does increase with the severity and duration of the epilepsy.  When moving into young adult hood, risks increase so the change between child and adult services and between home and leaving home is very important.


What risk factors increase my risk of SUDEP?
The strongest risk factor for SUDEP is a generalised tonic-clonic seizure (which some people call a ‘grand mal’).  The more frequent these convulsive seizures are, the higher the likelihood of SUDEP.  This risk factor may be changeable. Other identified risk factors that may be changeable are:

  • Active Seizures
  • Abrupt changes in medication or not taking medication as prescribed
  • Excess drinking &/or taking illegal substances
  • Unwitnessed seizures.

Identified risk factors for SUDEP which cannot be changed are having epilepsy for more than 15 years, seizures during sleep, and the onset of epilepsy before aged 16.


Why do some seizures and not others carry risk of SUDEP?
Generalised Tonic-clonic seizures are known to cause changes in breathing and heart rhythm. It is not understood why these lead to SUDEP in some people, but not in others. Research is well underway into this vital question.

Some types of seizures are not normally associated with SUDEP. Therefore, it is important to talk with your doctor to establish whether this is a risk which is relevant to you or not and to put any risk into proper perspective.


Can I change the risk of SUDEP?
The most important step you can take to avoid SUDEP is to minimise the number of seizures you have. There are other positive steps you can take to help reduce your risks:

  • Take your prescribed medication regularly and reliably. 
  • Keep regular appointments with your health professional and attend your regular medical reviews. 
  • Consider using a diary or smartphone app like EpSMon to also monitor your epilepsy and any changes to it in between medical appointments.
  • Do not make adjustments to your medication or stop taking it, without talking to a health professional first. There is help available to safely look at your choices.  
  • If you are making changes in your life such as moving away from home, taking contraception for the first time, thinking of starting a family, see if your epilepsy care plan needs to change and speak to your health professional beforehand.
  • Identify the triggers for your seizures. 
  • Do you find that your epilepsy is particularly affected by not sleeping enough, drinking too much alcohol or taking recreational drugs? If so, try to avoid the trigger.
  • Discuss other epilepsy treatments with your health professional. 
  • If you feel your medication is not doing enough to control your seizures, there may be other options such as surgery.
  • Confide in your friends. Tell them that you have epilepsy and explain what they should do if you have a seizure.

 

Can safety devices help?
There are many devices and tools available which may be useful for some people with epilepsy to help them stay safe while they are still experiencing seizures, especially if they live alone. Hopefully one day we will have evidence of a monitoring system that is proved as a reliable intervention for SUDEP. 

In the meantime, these monitors can offer some peace of mind. We know from some of our bereaved families, that should they have known about the risk of SUDEP, they would have sought advice on such devices. People with epilepsy must discuss with their health professionals the pros and cons of each device. And it is important to be aware that given the current research on such devices, it is likely that some deaths will still occur and people should be made aware of this possibility when discussing such devices. 

More information can be found here


What can I ask my health professionals?
If you and your health professional have not spoken about SUDEP, ask for an appointment. It is important to discuss your epilepsy and epilepsy risks (including SUDEP) with them. If you are unsure what to say, consider taking along some information leaflets or EpSMon to help. You could also tell them about the SUDEP and Seizure Safety Check List


Can I help as a family carer?
If you care for someone with epilepsy ask them if there is a care plan worked out with their health professionals and whether you can help. You may want to ask if there is information on what to do in the event of a seizure and how you can best support them should this happen when you are with them.

If there is no agreed plan:

  • Keep calm. Let the seizure run its course and do not try to do anything to stop it.  If possible, put something soft under the person’s head and move away objects to prevent injury. Do not restrain the person or put anything in their mouth. Talking reassuringly to them can help. If you can, try to time how long the seizure lasts.
  • After the seizure, lay the person on their side in the recovery position.  Simply moving someone may be enough to help breathing. Stay until they have recovered. Once their breathing and colour is normal it is good to let them sleep until fully recovered but avoid give them any food or drink.

Call an ambulance if one of the following circumstances applies:

  • The person is injured
  • The seizure does not stop after 5 minutes
  • The person has 3 or more convulsive seizures in an hour
  • The person has trouble breathing
     

Is there anything more I can read?
Some countries government/health departments produce guidelines and standards regarding epilepsy care that are informative to both people with epilepsy and their health professionals. If you are unsure if these are available where you live, take a look at our participating organisations page for an organisation in your country – they may be able to share this information.

For example the UK has the NICE (England & Wales) and the SIGN guidelines for epilepsy care.

SUDEP-the Global Conversation – contains the latest information from international experts in the epilepsy field.