Status Epilepticus

Long and challenging seizures, what are they? And what do I need to do?

Being a young person with epilepsy doesn’t mean that your epilepsy has to define you or hold you back. But, as with all medical conditions, having as much knowledge about your condition, what care is available to you and how those around you can help manage your condition in an emergency is important.

Status Epilepticus is a type of long or continued seizure and is considered a medical emergency. It doesn’t affect everyone with epilepsy, but it’s a good idea to know about it.

Here’s all the information you need on status epilepticus.   

What are status epilepticus seizures?

  • They are seizures that lasts for longer than five minutes. (The majority of seizures last for no more than two minutes.)
  • They can be more than one seizure that occur close together with no periods of consciousness between them.
  • They can be convulsive or non-convulsive.

During convulsive status epilepticus, tonic-clonic seizures occur either for longer than five minutes or they occur in quick succession without you regaining consciousness between them. (Tonic-clonic seizures are when you lose consciousness, your body stiffens and your limbs move about quickly and uncontrollably. You may also find it difficult to breathe, bite the inside of your mouth or lose control of your bladder or bowel.)

During non-convulsive status epilepticus, absence seizures or focal impaired awareness seizures occur for long or repeated periods of time. (Absence seizures are when you lose your sense of awareness of where you are or who you’re with. Focal impaired awareness seizures mean that you’ll lose your sense of awareness at the same time as making repetitive sounds or movements, such as chewing or rubbing your hands together.)

What treatments are available to me?

If you’re at risk of status epilepticus, then your epilepsy doctor may prescribe you emergency meds to keep with you. It’s important that you or your parent carry these meds with you at all times and that you all know where they are so that they can be used if you’re experiencing status epilepticus. They can help to stop or reduce your seizures until emergency medical care arrives.

Your parents or another person such as member of staff at your school will be given training in how to give them to you if you experience status epilepticus. If you’ve experienced status epilepticus before, then you may need your emergency meds sooner than after five minutes of seizures. Everyone is unique and has a different care plan, and the same goes for your emergency treatment plan. Your epilepsy doctor will discuss this with you, and everyone who is trained to give you emergency meds will also need to be aware of your personalised care plan. Your emergency meds should only be administered by someone fully trained in how to use them.

Training is given by a specialist epilepsy nurse or a community nurse so that your parents or other person can give you your emergency meds safely and effectively if you need them.

It’s important that your seizures are timed, so that your friends and family know if you’re experiencing status epilepticus. The people that you spend time with should know that they are to time your seizures. If you’re experiencing a prolonged seizure or group of seizures close together, then it’s important that those around you know to call 999 straight away. If your care plan states that you need an ambulance in the event of status epilepticus, ambulance paramedics carry emergency meds that can be administered when they arrive, and these meds can also be given in hospital.

There are two types of emergency meds – buccal midazolam and rectal diazepam. Buccal midazolam comes as meds called Buccolam or Epistatus and is administered directly into your mouth in the area between your gums and cheeks. Rectal diazepam comes as meds called RecTube or Stesolid and are administered anally.

Click here to download our first aid advice to help someone who may be having a prolonged seizure
Read more about Click here to download our first aid advice to help someone who may be having a prolonged seizure

Can I recover from Status Epilepticus?

If status epilepticus is treated as a medical emergency, then it’s entirely possible to recover from an episode. Sometimes, if you have emergency meds and they stop your episode of status epilepticus, you may not need to go to hospital.

Untreated, status epilepticus can increase the chance of long term damage or even death. It’s therefore really important that those around you know what to do if you’re at risk of status epilepticus:

  • To always know where your emergency meds are
  • To time your seizures
  • To know that status epilepticus can cause you to experience a seizure that’s longer than five minutes or is a cluster of seizures where you don’t recover in-between
  • To know how to administer your emergency meds
  • To call an ambulance if your care plan says so, or if your emergency meds haven’t helped to control your seizures

How can I reduce my risk of experiencing Status Epilepticus?

The first step is to make sure that you always take your epilepsy meds regularly and that you never change your dose or frequency without receiving advice from your epilepsy doctor. It’s also important to ensure that your meds are the right ones for you so talking to your medical team about any changes you might be experiencing is important.

For example, stress and a lack of decent sleep can be a trigger for some people with epilepsy. So taking steps to help manage stress and ensure you get a good nights’ sleep can be helpful. This might mean speaking to your teacher or lecturer about an upcoming coursework deadline or exam that’s worrying you, or asking your parent or guardian for some time away from household chores in order to study more. It can even mean taking time out with friends to relax and have fun.

Drinking excessive alcohol is linked with an increased risk of experiencing Status Epilepticus. So if you’re going to drink alcohol, keep note of how much you’re drinking and stay within safe limits.

If you’re concerned about status epilepticus, speak to your epilepsy doctor or epilepsy nurse. And don’t forget, we’re also here to support you and you can always tell us whatever’s on your mind.