Information about non epileptic seizures and Non Epileptic Attack Disorder.

Non Epileptic Attack Disorder

Non epileptic attacks look like epileptic seizures but are not caused by electrical activity in the brain. The condition has several other names such as dissociative seizures, psychogenic non epileptic seizures (PNES), functional seizures or, fortunately used rarely now, pseudo-seizures. Many people may first be diagnosed with epilepsy and be put on anti-epileptic medication before further tests reveal that the events they are having are actually NEAD. In the UK, it is estimated that around 15,000 people have NEAD, although it may in fact be higher as so many are wrongly diagnosed with epilepsy. Of those sent for video telemetry testing in a hospital setting for intractable seizures, around 4 out of 10 will be found to have NEAD.

Figures published for the United States in 2000 show “the prevalence of psychogenic non-epileptic seizures is somewhere between 1/50 000 and 1/3000, or 2 to 33 per 100 000, making it a significant neurologic condition.” (Source: www.seizure-journal.com/article/S1059-1311(00)90409-6/abstract).

What are the symptoms?

As with epileptic seizures, non epileptic events vary from person to person. Most commonly, the attack will mirror a tonic-clonic seizure with obvious convulsion like movements of the arms, legs, head and body. This may be down one side of the body only or involve the whole body or may affect just one part of the body such as an arm or a leg. The person suffering the attack does not usually lose conciousness but may be unable to respond or react during the attack. Some people have an ‘aura’, a strange feeling, that acts as a warning the attack is about to happen which enables them to make sure they are safe.

Some people may fall to the floor, bite their tongue, lose control of their bladder or hurt themselves. For other people, the attack appears more like a complex partial seizure: they will go blank or just stare in an unseeing way. For many people, once the attack is over they will feel confused and tired and may take some time to fully recover. Some people can suffer memory and concentration problems for a few days after the attack.

Non epileptic attacks differ from epileptic seizures in a number of ways. More often in a non epileptic attack, the sufferer will have their eyes closed, the attack tends to last longer and may indeed go on for quite some time and the head moves from side to side. The sufferer is usually aware of what’s happening but may be unable to respond. However, everyone is different and it is often only when the patient is seen by a specialist that the differences can be discerned.

What causes NEAD?

It is currently believed that NEAD is the brain’s response to overwhelming stress but there may be other causes. In the same way that a computer may freeze if you open too many windows, the brain uses it as a way to ‘shut down’ when it is overloaded. For some people, the cause may be a traumatic event such as sexual or physical abuse when they were a child, a major accident or the death of a loved one. For others, it may be an accumulation of stress over time.

Whenever a person is confronted with a stressful event, the brain goes into ‘fight or flight’ mode, releasing chemicals, which prepares the body to either fight or run away. This was useful to humans in the days when if you didn’t react instantly to something, you could be eaten! These days, the brain still reacts in the same way even if the perceived danger is not actually a threat. For people living in stressful circumstances, this ‘fight or flight’ mode is switched on constantly which means they will be especially sensitive to things like sudden noises, flashing lights or an argument with their boss or spouse.

Often, people diagnosed with NEAD have other health problems such as a chronic illness, anxiety or depression. People who have epilepsy may also develop NEAD. The disorder affects people of all ages, including children and is more common in women than men.

It is important to stress that the attacks are VERY REAL. The person having them is not faking and is not able to stop them. Unfortunately, because the disorder is little understood, many health professionals may not know about it and patients may have a difficult time getting a proper diagnosis and the correct treatment.

How is it diagnosed?

As already stated, getting a diagnosis may take quite some time. People may initially be diagnosed with epilepsy and be put on anti-epileptic medication. It may be that when these medications don’t work, the patient will be referred for further tests.

When a patient first presents with seizure like events, the doctor will ask for a full medical history. They will ask how often the events happen and what they look like. The patient will be sent for an EEG, a test, which measures the electrical activity in the brain. The doctor will want to talk to anyone who has witnessed the seizures, asking them to describe what they have seen and may ask them to video future seizures. Often by looking at the video, a NEAD specialist, usually a neurologist, can tell whether or not the seizure like event is epilepsy or NEAD. Further tests may be carried out to establish whether there is a physical reason for the seizures.

If the diagnosis is still uncertain, the patient may be referred for a video telemetry test. The patient will be taken into hospital for a number of days, usually three to five, and will be connected to an EEG machine. They will be videoed constantly during their stay and will be closely monitored by medical staff. They may be required to go without sleep, be subjected to flashing lights or asked to hyperventilate in an effort to safely provoke an attack. All the information gathered is then analysed and the patient informed of the outcome.

What is the treatment?

As the events are not caused by electrical activity, anti-epileptic medication does not work unless the patient also has epilepsy. Most often, the patient will be referred for psychotherapy, usually cognitive behavioural therapy. If anxiety or depression is present, the patient may be offered suitable medication to help with that. Usually, once the patient has a definite diagnosis and understands what is going on, the non epileptic attacks will happen significantly less often and may stop altogether. Some people may be very upset about the diagnosis, feeling that they are being dismissed by the medical profession or that the attacks are ‘all in their head’. It is important again to say that the attacks are very real. There is an ongoing campaign to raise awareness of NEAD both for health professionals and for the general public.

I’ve been diagnosed with NEAD. Now what?

The diagnosis of NEAD will come as a shock to most people and it will take time to adjust to it, especially if you have been treated for epilepsy for a number of years. However, it is important that you accept it as best you can as an important first step on the road to recovery. There are several things you can do to help yourself:

  • Discover your triggers. By keeping a diary for a few weeks, writing down what you have eaten, how much sleep you got, whether you experienced any stressful events and any other information you think may be relevant, you will gradually see a pattern developing which will help you to identify triggers for the attacks. It may seem that your attacks happen ‘out of the blue’, perhaps when you are quietly watching television but if you keep a diary you may discover that an attack happens a couple of days after an argument with your spouse or you have a poor night’s sleep.
  • Find ways to manage your stress levels. Each of us is different, so what works for one may not work for another. Things that may help include listening to music, relaxation techniques, going for a walk in nature or mindfulness. Try and avoid people or situations that could trigger an attack or if that’s not possible, minimise your exposure as much as you can. If you are referred for cognitive behavioural therapy, make the most of it and talk to your therapist about anything that is bothering you. If you are unable to get an NHS referral, consider going private. If you are the kind of person who never says no to other people, or are a perfectionist wanting everything to be just right, try and regulate what you do so as to keep stress to a minimum.
  • Take care of yourself. It’s important to eat properly and to sleep well. If you have trouble sleeping, talk to your GP. Make sure you get some regular exercise, especially outside. Do things that you enjoy. If your attacks happen frequently, it can be tempting to just stay indoors and not do anything but that will just make things worse. Try learning something new such as a new craft or a language. Spend as much time as you can with positive people who make you feel good and whose company you enjoy.
  • Try distraction techniques if you feel an attack coming on. Often, when you have an attack, there is nothing you can do to stop it but if you feel one coming you can try techniques such as ‘sensory grounding’ where you really concentrate on rubbing something rough, such as a stone or a sea shell whilst thinking about how solid the ground beneath your feet is or how safe the chair you are sitting on feels. You can also try breathing techniques such as those taught in yoga or mindfulness. Listening to music may help unless noise is one of your triggers.
  • Join a self help group. Sometimes, just knowing you are not the only one can help a lot. There are several online groups, some of which are listed here.
I’m the carer/loved one/friend of a NEAD sufferer. What can I do?

If someone you love or care for is diagnosed with NEAD, it is important that you support them as much as you can. Remember that the attacks are real and that overwhelming stress is causing them. Some things you can do are:

  • Learn how to deal with the attacks. As with epileptic seizures, make sure the person is safe and remove anything from the immediate surroundings that may hurt them. Place a cushion, rolled up coat or similar under their head. DO NOT attempt to put anything in their mouth. If possible, move them into the recovery position. Reassure them constantly, they can hear you even if they don’t respond. When they come round, allow them time to fully recover before offering a drink of water. There is no need to call an ambulance unless the person has suffered an injury. Remember that if the attack happens in a public place, the person will be very distressed so try and make sure there isn’t a crowd of onlookers when they come round. If it is practical, try and video the attack if the person does not yet have a proper diagnosis.
  • Help them reduce stress. Do everything you can to help reduce their stress levels but don’t treat them like an invalid. It is important that they feel in control. If they are reluctant to go out for fear of an attack, offer to go with them and keep encouraging them. Isolation will only make the condition worse. Honestly review your own behaviour to see if you are part of the problem and if so, work on ways to become part of the solution.
  • Learn all you can about the condition. Websites such as this one, self help groups etc will all provide you with information you need.
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