SUDEP and status epilepticus

This is a subject that can be difficult to write about and so for many there seems far too little information about it. SUDEP (sudden unexpected death in epilepsy) and status epilepticus are a daily concern for some epileptics and their families and others are simply unaware of them. Rarely do doctors or specialists explain these risks seemingly to avoid causing additional stress when the conditions are uncommon. However this can cause more distress to the families of a relative who has passed away due to the conditions with no knowledge that this was a possibility. So I decided to write this hub mostly to raise awareness of the complications of having epilepsy and partly to try and face my own fears on the subject. There are, like myself, epileptics who fear these complications and feel unable to share their concerns because the answer "it won't happen to you" doesn't make you feel any better. What people want is to better understand, to know the risks and to know what they can do to reduce these risks, I hope that I can answer some of those questions here.

SUDEP is unexpected death in epilepsy. It is thought to account for around 18% of deaths in people with epilepsy. The amounts are debatable and difficult to predict as research is difficult to carry out and it's believed by some researchers to be underused on death certificates making it more challenging still. SUDEP is seen as the death of an individual with epilepsy where no other reasons for death have been found after a postmortem, it is not a condition but a category.

To clarify 'unexpected' it would only be fair to include 'expected' death in epilepsy, so without wishing to cause too much alarm these would include a any of the following: death from prolonged seizure/status epilepticus (read more on this further down), death as result of seizure such as trauma, drowning, burning, choking or due to medication complications such as suicide or violent episodes. It may interest you to know that the unfortunate facts that the standardized mortality rate of people with epilepsy is currently shown to be 1.6-9.3 times higher than the general population.

If you can see many similarities here to your own current condition please remember that it is a rare event and should you be concerned please speak with your specialist. There are many factors that are thought to increase risk of SUDEP and these are still being studied. Some of the main factors are people who:

• experience frequent tonic-clonic generalized seizures especially during the night
• have poor control over their seizures
• have sudden changes to or do not take their anti-epileptic medications
• are male you are more likely to suffer SUDEP ratio of men:women thought to be 7:4 
• aged between 20 and 40, highest risk point considered to be 28-35 years of age.
• have a learning disability

It is generally defined as a life threatening condition when the brain remains in continuous or recurrent seizure for 30+ minutes. Though now many hospitals, doctors and specialists advise this to be the case after 5 minutes, as it is unlikely that the brain will naturally stop the seizure after this point. There are reasons that this can effect people who do not have epilepsy for instance brain tumors, diabetes complications, alcohol withdrawal and serious head injury. Head injury is also seen as a reason for people with epilepsy who have hit their head at the start of a seizure and the brain has been unable to correct this. At least 20% of people who suffer status epilepticus will die especially increased in those who do not receive fast and efficient medical help. Of those that do survive some will be able to make a full recovery whilst many others will be left with varying severities of brain damage. There are rarer types of non convulsive status epilepticus these are complex partial status epilepticus and absence status epilepticus. These two forms are near impossible to differentiate between without tests, they are characterized by unresponsiveness and staring.

The risks are similar to those for SUDEP the main difference being that status epilepticus is most likely to effect the very young or the elderly and that the person does not have to have had any seizure condition previously diagnosed. The important things to remember are that you need to take your medications despite side effects, speak to a doctor before you discontinue any prescribed anti-epileptic medication. Avoid any triggers that you are aware of and don't binge drink or drink heavily on a regular basis. Stay in regular contact with your specialist and make sure friends and family are aware of how to deal with you and your seizures effectively.

I hope that you have found this information useful and that it has raised some much needed awareness to these two major risks faced by epileptics. Though for the majority of people epilepsy can be well controlled and for some go completely especially in certain forms of epilepsy in children. For those of us that do not fit into those brackets, these 'unexpected' events mixed with the previously explained 'expected' problems leave us feeling a little helpless at times. I've tried to make this article as factual and up to date as possible without meaning to add any undue stress to others and hope that I have succeeded. Please comment below if you have anything that you can add to this topic that is so rarely discussed.