What is NEAD?
NEAD stands for non epileptic attack disorder. The main symptom is seizures that look like epileptic seizures but are not caused by electrical activity in the brain. Associated symptoms may include fatigue, cognitive difficulties, memory loss, confusion on coming around from the seizure and temporary paralysis of parts of the body. As with Epilepsy, the seizures differ from person to person and range from staring blankly through apparent inappropriate behaviour such as shouting, laughing uncontrollably etc, to blackouts, to falling to the ground with various parts of the body, or the whole body, twitching and jerking. People are generally aware (but not always) of what is occurring but are unable to respond.
In adults we know that for every 1000,000 people, between 15 and 30 have non-epileptic attack disorder. Nearly half of all people brought into hospital with suspected epilepsy turn out to have non-epileptic attack disorder.
What causes NEAD?
It is believed that NEAD is the brain’s response to overwhelming stress, but there may be other causes. For some people this may be a specific traumatic incident (such as abuse, accident or death of a loved one), for others, an accumulation of stress over time. Stress can be physical (e.g. pain) or emotional. Many people are confused by the diagnosis, as they don’t feel particularly stressed.
How are they different from epileptic seizures?
Non-epileptic attacks may look like epileptic seizures but there are important differences. The brain normally works by sending electrical messages along nerve fibres to carry out tasks. In epileptic seizures, the brain produces abnormal electrical messages. These abnormal messages cause the changes in people’s experience and behaviour during epileptic seizures. Although non-epileptic attacks look similar to epileptic seizures, they have a different cause and there are no abnormal electrical signals.
Why do they happen?
Non-epileptic attacks can be the brain’s response to potentially threatening triggers inside or outside the body. Inside triggers include thoughts, memories, emotions or sensations. Outside triggers include difficult situations but also objects, scenes, sounds or smells which remind the brain of a difficult moment in the past. Sometimes this happens when people feel stressed. However, they can also happen to people who feel calm and relaxed. In most cases people do not know why they have them.
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 may 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 after 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 undergo cognitive behavioural therapy, make the most of it and talk to your therapist about anything that is bothering you. 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. FND action group have a Self Help Facebook Group.
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 causing overwhelming stress. 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.
- Learn all you can about the condition.
CBT is generally the first line of treatment for patients with dissociative (non-epileptic) seizures and is supported by clinical trials. Therapy includes time to learn more about your attacks and recognise brief warning symptoms and learning techniques to regain control. For some individuals it is helpful to look more widely at thoughts, emotions, and experiences that could have played a role in the development of symptoms. For those without anxiety and depression, psychological therapy may still be useful in helping you to regaining confidence. FND itself is a stressful condition to manage and live with. Other types of psychological therapies can also be used depending on the individual patient. I am happy to discuss the options in an initial phone consultation without obligation. Every case of NEADS is unique and it is important to find the therapy most suited to your particular experience.