The Elephant in the Room

For people who live with epilepsy and those who care for them, the word SUDEP is the one word that can strike fear into their everyday lives!

Therefore the most natural reaction when this subject is approached is to switch off and shut down, as ignorance is bliss, right? And if we don’t acknowledge it, it will never happen to us. Because ultimately who wants to think about the risk of losing their loved one to a seizure?

But by doing this you end up creating The Elephant in the Room. Everyone can see it, it consumes your life and you have to constantly find ways to move around it, but if you choose to ignore it and carry on with life hopefully one day it will just go away!

And as tricky as this subject is we know that SUDEP can and does happen. So by arming yourself with facts, knowledge and tools, you can give yourself the best chance of safeguarding, which can ultimately lead to better quality sleep at night and a better mental welbeing during the day.

So how common is SUDEP?

Sadly 21 people a week die from SUDEP in the UK. (that’s more than 1000 people a year)  and research has shown that as many as 400 of these deaths could potentially be prevented, that’s nearly half!

There is growing research globally into what causes SUDEP and if it is in any way preventable, yet unbelievably 1000’s of people with epilepsy have never heard of SUDEP, let alone found out if there are possible ways to safeguard themselves.

The NICE and SIGN guidelines both advocate the discussion of SUDEP with patient’s at the earliest opportunity post diagnosis. However some clinicians working in epilepsy feel that bringing the issue of death into preliminary consultations could have a stigmatizing effect while also having an impact on their therapeutic relationship. A survey among UK neurologists showed that only 4.7% of them discussed SUDEP with ALL PATIENTS and 25.6% with the MAJORITY OF THEIR PATIENTS. The rest discussed the risk of SUDEP with VERY FEW or NONE! So potentially over 70% of patients in the UK are being left with no information at all on SUDEP from their consultants and rely soley on word of mouth or stumbling across information on the internet. (read the full study here – https://www.sciencedirect.com/science/article/pii/S1059131113002215)

So what is known about SUDEP?

Although the precise cause of SUDEP is still largely unknown, studies have reported that SUDEP is associated with a combination of several medical conditions, including central or obstructive apnoea (breathing sleep disorders), pulmonary oedema (excess fluid in the lungs), dysregulation of cerebral circulation (disruption of blood flow to the brain), autonomic dysfunction (nerve damage), and cardiac arrhythmias (disruption of heart rhythm).  

It is also thought that whats known as True SUDEP (deaths that are not linked to reversable causes such as choking, suffocation or illness) are potentially linked to a complete shutdown in the brainstem which leads to multi-system organ failure. Most SUDEP deaths are also caused by nocturnal seizures (mainly Tonic Clonic) when people are most vulnerable as they are generally alone at night. And most people who are found to have sadly passed away are usually found to have been lying on their front.

So who is most at risk of SUDEP?

Over the past few months, there have been several new studies published worldwide and these studies show that the people who are most at risk of SUDEP are:

And new research from the Epilepsy Society UK also shows that people are most at risk of SUDEP in the 10 mins post-ictal (after a seizure has ended).

So taking all this on board what can we do to help safeguard against seizure related deaths?

When it comes to safeguarding yourself there are a few key things you can do:

  • Know your epilepsy – Managing your condition is so important, SUDEP Action have a fantastic award-winning app called EpSMon which can help you self-monitor in between your visits to your doctor/ consultant or epilepsy nurse and is available for free on android and apple devices. https://sudep.org/epilepsy-self-monitor
  • Make sure you have a good care network in place – Speak to your friends and family about your epilepsy. The more those closest to you understand your life and your condition, the better they can support you and pick up on any changes that could help safeguard you.
  • Stay in regular contact with your epilepsy nurse or consultant – Even if your epilepsy is relatively well managed, make sure you stay in regular contact with your epilepsy nurse or consultant (at least once a year) that way you can keep them informed of any seizure activity you are having or anything that doesn’t quite seem right. They can help review your medication and ensure that your emergency protocol is still relevant and up to date.
  • Make sue you take your medication on time –  Medication at times may seem like a chore, and if you are well maintained by your medication or even seizure free, you may well think do I really need to take it? This can be extremely dangerous as it is so important to take your medication on time everyday to maintain the balance in your body and prevent breakthrough seizures or abnormally prolonged seizures and changes in your seizure patterns.
  • Use Aides and Technology to Help Safeguard You – There are lots of tools available to help safeguard you. Anti-suffocation pillows can potentially help reduce the risk of suffocation during a seizure, especially if you like to sleep on your front, bed guards can help reduce falling from bed and becoming trapped in awkward positions or injuring yourself, Seizure Alert dogs can detect and alert to the onset of a seizure. Some Seizure Monitors can also help safeguard you, in particular PulseGuard™ as it alerts to the clinical change in your heart rate at the onset of a seizure but also at the onset of respiratory or cardiac arrest which can lead to SUDEP.
  • And finally get trained in CPR – With the NHS struggling and ambulance demand growing, it is crucial that everyone who cares for someone with epilepsy is CPR trained. If you have already taken a CPR course make sure you take part in a refresher course every couple of years so that you can be up to date with any changes since your last course and get the chance to practice your skills so that you can be prepared if you ever have to put them into practice. St John Ambulance offer all residents across the UK the chance to take part in CPR training courses local to them for just £25 + VAT and learn the vital skills and knowledge of how to cope in an emergency in the crucial time before an ambulance arrives. And if you can find a group of 6 or more of your family and friends who would like to take part in a course you can book a private group course for the same price (for more information email kate.farmer@pulseguard.org).

We don’t know if we can prevent or reverse SUDEP, But what we do know is that by putting all of these safeguarding measures in place we can help defend against the PREVENTABLE DEATHS IN EPILEPSY and for family and carers of those living with epilepsy, you can know that you have tried everything in your power to safeguard your loved one rather than being left with the question of what if?

If you would like to help support towards further research into SUDEP please contact SUDEP Action  to make a donation or find out how to fundraise

Email: info@sudep.org Phone: 01235 772850

For more information on anything mentioned in this article, please contact Kate Farmer Senior Clinincal Advisor for PulseGuard International Ltd on  kate.farmer@pulseguard.org

Author Info

Kate Farmer

Senior Clinical Advisor for PulseGuard International Ltd. I have 15 years experience working frontline A&E in the UK NHS Ambulance Service. I have gone on to train and research extensively around epilepsy, to provide the most up to date information, clinical advice and support to PulseGuard customers and followers as well as living first hand with the personal effects of Dravet Syndrome within my family

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