Sally says: ‘At the moment the attacks are controlling my life as I have around 8 a day, it’s so scary and I feel so lost and confused. It's really difficult to cope with both my regular life and the attacks I am having now.’
Hannah says: ‘Thus medical advice has been to get on with life as normal, which in my case definitely was the absolutely best advice I could have been given.’
Alice says: ‘I've noticed that my attacks get worse when I am really anxious and panicky. The doctors have said that as well as having NEAD I also have panic/anxiety attacks.’
George says: ‘Self management and support from groups help the understanding process. Take each day at a time, I still write things down in my diary so if anything happens, I can look back and say, ah .... stress, work, fatigue and infections are my main triggers.’
What can I do to help myself get better?
- Feel comfortable and clear about the diagnosis. If you understand and accept the diagnosis you are more likely to get better. Understanding that your attacks are non-epileptic means that the wrong treatment treatments can be stopped and the correct ones started. Trying more or different antiepileptic drugs or having more tests when the diagnosis of non-epileptic attacks is certain will not help.
- Use the specialist help on offer. Some people with non-epileptic attacks find it very difficult to accept the diagnosis and take up treatment. People who have this problem often continue to take anti-epileptic drugs. These drugs only stop seizures caused by epileptic activity in the brain. They do not control any other attacks and can have harmful side effects.
Going to see a specialist for ‘psychological help’ may seem scary. However, a psychologist, psychotherapist or counselor may be able to help you find out what caused your attacks to begin with and what triggers each attack. perhaps you can learn to control and stop your attacks. Try to make the most of the services on offer to you. If you do not take up psychological help you are less likely to recover and it is more likely that your attacks will continue.
- Look for warning signs. Some people get a warning before they have an attack. This may be a physical symptom (such as dizziness, headaches) or a sensation (such as smells, changes in vision or tingling). If you are someone who gets a warning before an attack you can try a technique called sensory grounding. This technique could help you to fight off an attack or delay it until you get yourself somewhere safe or more private.
- Find your triggers. Think about what is happening before, during and after an attack. Are you frightened? Are you worried about something? Understanding what triggers your attacks can help to prevent them. A good way of beginning to recognise your triggers is by keeping an attacks/emotions diary. Here you can write down each time you have an attack, when it happened and also what had been going on in your life that day, particularly things that might have caused you to feel emotional in any way. Doing this can help you to understand your attacks better and learn what might set them off. For some people the attack comes straight after the trigger, for others it could even be the following day.
- Identify Frightening Thoughts. Some NEAs seem to happen when an uncomfortable situation triggers a frightening thought. For instance, you may be standing at the top of the stairs and feel slightly uncomfortable looking down the stairs. This may trigger the thought 'I could fall down the stairs and hurt myself '. This could be the 'final straw' causing your brain to lose control and 'switch off'. Many people don't like being in the middle of a crowd. They may suddenly begin to think 'It would be really embarrassing if I had an attack now'. Others may get uncomfortable because they cannot understand something or because too much seems to be happening at once. They may suddenly think 'I am going crazy'. Identifying such thoughts and discussing these worries with someone can help you gain more control over your life.
- Relaxation. People often find that they are more likely to have a non-epileptic attack when they are feeling tense. If you find yourself squeezing your hands together, fiddling with things, tapping your hands or feet, grinding your teeth or hunching your shoulders, or if you often feel ‘wound up’ or are easily startled, that is an indication that you are tense. In this case regular relaxation may be helpful.
There are many relaxation techniques to choose from in shops and on the internet (such as NHS Choices). Pick the one which suits you and practise this every day to reduce your level of tension. You can download a written description of our relaxtion technique here or download and listen to it here. This exercise helps you to recognise what each individual muscle in your body feels like when it is tense and teaches you how to relax these muscles.
If at any time relaxation techniques make you feel ‘funny’, dizzy, or more tense it is unlikely that they will help you. In this case we recommend that you should stop practising.
- Abdominal Breathing. Many people with NEAs or anxiety attacks find that their breathing becomes difficult or quick and shallow before an attack. This is called hyperventilation. It increases the likelihood of having an attack and causes you to feel strange and light-headed. Abdominal breathing is a way of getting control over your breathing. Doing this can help you to fight off an attack and feel more calm. Practice this at home and then use it whenever you start to think that you are going into an attack, or if you start to feel anxious or panicky.
Click here to download instructions on how to do abdominal breathing .
If at any time abdominal breathing techniques make you feel ‘funny’ or dizzy, it is unlikely that they will help you. We recommend that you should stop practising straight away.
- Time out. Another useful technique that can be used when you are feeling stressed or anxious is to take time out. It can be used at any time, in any situation and no-one even need know that you are doing it. Just take a few minutes out of the stressful situation to go to the relaxing place in your mind.
Click here for instructions on how to do the time out technique.
- Talk about your emotions. Many people who have non-epileptic attacks have a tendency to push away or ‘bottle up’ difficult feelings and they ‘just get on with it’, often not even recognising how they are actually feeling. Other people do experience strong emotions but only let them out when they are alone. Some bottle things up for as long as they can, and then explode in an uncontrollable outburst. However, it is by putting difficult emotions and things that have happened into words, sharing them with others, talking about what is wrong and realising that we are not alone that we can make sense of emotions and that they become less frightening and more manageable. Sometimes, when we try to ignore strong emotions, they show in a physical way such as through NEAs or other physical symptoms, or through psychological problems such as anxiety and depression. The best thing to do is to try talking to somebody who you trust. Telephone help lines may also be a good way to unload.
Click here for a list of words to describe emotions.
- Write down how you are feeling. Writing feelings down can often help, for example in a diary, by writing poetry or just plain writing. A letter to someone who has passed away may not reach them anymore but it can help you think more clearly about things you wanted to tell this person and change how you feel about the loss.
- Don’t be over-cautious. Non-epileptic attacks can be frightening, and you may be worried about going out alone in case you have an attack. Whilst this is understandable it is important to carry on with life as normally as possible. The happier and more fulfilling your life is, the better you will feel. This may well reduce the number of attacks you have. You should not assume that you can’t do something just because of your attacks.
Some people stop many of their normal activities and restrict their lives because they are afraid of having an attack. So people may give up work, stay in the house most of the time, don’t go anywhere alone, stop using public transport and avoid being with people. If you do this you are likely to feel frustrated, lonely and depressed, and to focus all your attention on your illness, so that your stress levels go up and you lose your self-confidence. The longer you go without going out or doing much, the harder it becomes to start again, and the more depressing life becomes.
- Build up your confidence step by step. People who have lost their self-confidence often restrict their life to a small space in which they feel safe. Occasionally they may have a good day and be tempted to try something really brave. If this fails, they feel worse than ever. It is better to build up your confidence gradually by overcoming smaller hurdles before tackling bigger ones. Gradually start to do things and become more independent again, finding ways of tackling problems.
Click here to download our worksheet on problem solving.
- Learn to say ‘no’. Are you one of those people who is always there looking after everyone else but no-one seems to look after you? Are you continually busy with all the demands and responsibilities you have and never seem to get a moment for yourself? Does it feel selfish if you think of saying ‘no’ when someone asks you for help, as if you would be letting them down? Some people who have NEAs seem to spend all their time looking after others but ignore their own needs. As a result they become stressed, tired and even resentful, and have more attacks.
If this applies to you may want to think about taking some of the pressure off yourself. Do you really need to do everything you are doing? Do you have a partner or teenage children who should be doing more round the house? Are there people who would like to give you support if only you asked? Talk to your friends and family and make sure that you take time for yourself to rest and relax and do the things you enjoy.
- Continue working. People often leave their jobs because of their attacks. Remember that living as normally and independently as possible can help speed up your recovery. Talk to your employers about your attacks and see whether there is anything they can do to accommodate your condition. Make sure that your colleagues know about non-epileptic attacks and what they should do in case you have an attack at work.
Click here for what people should do during your attacks .
- Sleeping well. We all need different amounts of sleep in a night. When we feel unwell, our sleeping pattern can be affected and this can make you feel tired the next day leading to irritability and poor functioning. It is therefore important to get in to the habit of sleeping well at night. Measures which can help you sleep well and efficiently at night are called ‘sleep hygiene’.
Click here for suggestions on sleep hygiene.
- Eating well. We all know the saying,” We are what we eat”. What you put in to your body can affect your well-being. Why not try keeping an Eating Diary for a few weeks to see if it helps you to recognise your eating patterns and consider whether you could make some required changes?
Click here for our suggestions on eating healthily.
- Green Exercise. Recent studies have shown that just a few minutes outdoor exercise like walking in the open air (especially near water) can improve mood and self esteem.
The author of the studies says “We should be encouraging people in busy and stressed environments to get outside regularly, even for short bits of time”. Try spending a small time outside every day.
- Fitness programs. Adults should do at least 30 minutes of moderate exercise a day. Most of this exercise can be short, done in the home or involve short trips outside or even in the garden. It is not always necessary to go to a gym. There are many home fitness programs available on the internet, at the library and on electronic gaming consoles.
NHS choices has lots of information on home exercises, 10 minute workout ideas and exercise basics. You can see this information on their website NHS choices.
- Remain positive. Give yourself time to get better and remember that non-epileptic attacks can be overcome.
As well as things you can do and things you can change about your lifestyle, there are also some things that you should not do. For information about what you could also stop doing to help get better click here.