In previous posts, I’ve talked about how more epilepsy awareness would bring a boost to the lives of so many people. I’ve also mentioned that epilepsy is a complicated condition – although I’m writing this blog, I don’t understand everything about epilepsy. And the specialist doctors? With all due respect, if any, it’s not many.
In fact, when people chat to their doctor about their epilepsy, one important talking point is often avoided. I’d say their patients know what it is but tend to know too little about it. And people who have no direct connection to epilepsy? Unless they’ve read a bit of information out of their own good will, they’ll know nothing at all.
The truth is that every epilepsy patient should be aware and know ways to avoid the possibility of SUDEP – Sudden Unexpected Death in Epilepsy.
What Causes SUDEP?
Researchers are still investigating the causes of SUDEP, although it is unlikely there is a single cause. Quite often, people who have epileptic seizures have changes in their breathing and heart rhythm, but this isn’t usually much of a problem.
Nevertheless, if more serious changes occur – such as a major drop in oxygen levels in the sufferer’s blood – this could be a possible trigger for SUDEP. Seizures could be effecting the brain’s influence on breathing and the heart. There could also be a genetic link between seizures and heart rhythm abnormalities.
These possibilities all need to be researched in depth, and advancements are being made to highlight the critical risk factors involved with SUDEP.
What is a Patient’s Risk of SUDEP?
Now, SUDEP is rare – among the population of people with epilepsy, the odds of you losing your life to SUDEP are 1:1000.
However, people keeping an eye on their epilepsy should be more aware of the following:
- Generalised tonic-clonic (grand mal) seizures.
- Seizures that take place during sleep.
- Convulsive seizures that last a long time (referred to as status epilepticus or just ‘status’).
- Convulsive seizures that occur in a cluster.
If like me, you have any of these seizures, then there’s no need to panic – the odds are still extremely low. People who have the highest risk of SUDEP are ones being considered for epilepsy surgery and in specialist centres, where their risk varies between 1:50 and 1:300.
It’s also more likely to occur at an older age, but every person’s risk will differ. It depends on your type of epilepsy, your type of seizures, and whether you have a warning of seizures. As well as that, look into when and where your seizures happen, what other health problems you have, and what support is available to you.
Can the Risks of SUDEP be Reduced?
Yes, they can. The general idea when avoiding SUDEP is to minimise the number of seizures you have. To keep yourself a little safer, you should consider all of the following risk reducing tasks:
- Continuously taking your medication every day at a set time.
- Trying to identify your seizure triggers – common ones include drinking too much alcohol, taking drugs, or not sleeping enough. Look to reduce your reduce or increase your amount as necessary.
- Keeping track of your epilepsy by noting seizures and any other changes that occur between appointments with your doctor.
- Keeping every appointment you have with health professionals.
- Never making any adjustments to your medication without talking to a health professional beforehand.
- When making any significant changes to your life (such as moving away from home, taking contraception for the first time, starting a family), then talk to your health professional beforehand to check if any personal changes need to be made.
- Discussing other epilepsy treatments with your health professional. Feel free to do some research on alternatives before your next appointment.
- If you feel your medication isn’t working well enough, then there may be other options, such as surgery.
- Talking with your friends; tell them about your epilepsy and explain what they should do if a seizure occurs.
Understandably, SUDEP is a difficult subject to discuss. The thought of it can be upsetting or worrying, but knowing more about SUDEP will be useful for any person with epilepsy. Even if your epilepsy is very infrequent and well-controlled, changes can occur. By being aware of how to alter your risks could lead to maximum benefit.
To get a detailed overview of SUDEP online, I recommend viewing the website of charity organisation SUDEP Action.
Dealing with SUDEP
If somebody you know has sadly died from an epilepsy-related death, then you may feel shocked, confused and somewhat isolated from others around you. Although we weren’t too close, a friend of mine with epilepsy lost his life to it in July, and it was a shock when I first found out. If you lose somebody due to SUDEP, then this is another place where SUDEP Action offers their support.
The charity’s support team help people understand the inquest procedure and investigations. They also continue to comfort each person individually, looking to understand the sort of emotions they’re currently feeling.
I’ll do what I can to prevent SUDEP. The idea of suddenly leaving my family and friends after a seizure isn’t one I like. The older you are, the more likely it is to occur – but don’t forget to consider all of the tasks that could help you prevent it. If a question comes to mind, go ahead and talk to your doctor about it more if you wish.
It’s a never a good idea for any person that gets epilepsy in their lifetime to simply ignore it. In my eyes, every person with epilepsy needs to be part of a team, that includes health professionals, family, friends and people with epilepsy themselves.
I wish good luck to all.