So, you have been diagnosed with Non Epileptic Seizures or Non Epileptic Attack Disorder (NES/NEAD), this in itself can be a hard diagnosis to understand. It is natural to feel confused and vulnerable when you receive this diagnosis. Perhaps you have been told that there isn’t any appropriate medication to help you and you feel stranded and worried, assuming that there is nothing you can do. Perhaps you're feeling as though you’re destined to spend every day worrying about whether or not you’re going to have an attack.
You’re not alone and there are steps you can take to help manage your seizures and attacks. There are also strategies your friends and families can help you work on to support you through learning to take control of your attacks.
Stress can have a huge impact on NES/NEAD with the number of attacks increasing with the rise in your tension.
You may not always notice that you are feeling tense so you need to learn to listen to your body’s warning signals- you may find yourself fidgeting (jiggling your legs, tapping your hands or feet), grinding your teeth or hunching your shoulders. These signals may proceed a feeling of being wound up or wired.
Once you have learnt to recognise these red flags, you need to find a way to work with them and help you regain control.
RELAXATION AND MEDITATION
It may be helpful for you to build in some regular relaxation. There are myriad relaxation CDs, podcasts and apps available which can help you to pause and regather your thoughts and composure. Try a variety of these and work out what works best for you (I like guided meditation with a British accent as I find the American harder to tune out). The joy of apps is that you can always have them with you when you’re on the go so you don’t have to be without your support net.
Once you have learnt to listen to your body and recognise your red flags, ‘sensory grounding’ may help you to fight off or delay your seizures until you are in a safe place. There is a number of methods for sensory grounding but this one has been shown to be an easily memorable and effective strategy. It is helpful to practice this method when you are feeling stable so that you can remember it in the moment of an attack. It is also helpful to discuss this method with people you are close to so that they can help talk you through the strategies in the heat of the moment.
Place both feet flat on the floor
Lean back into your chair, and notice the feeling of the material and structure under you and against your back
Cross your arms over your chest
Gently tap your shoulders, alternating one side at a time (though shoulder tapping has been shown to be most effective, you can do this with your hands on your thighs if you don’t want to draw attention to yourself in public)
Once you are comfortable, follow these steps:
Describe 5 things you see in the room.
Name 4 things you can feel (“my feet on the floor” or “the air in my nose”)
Name 3 things you hear right now (“traffic outside”)
Name 2 things you can smell right now (or 2 smells you like)
Name 1 good things about yourself
TAKE A BREAK FROM THE MOMENT
Think about a place you have been where you felt happy and relaxed. It might be somewhere you have been on holiday or a special place in your home. It should be somewhere where you have felt calm and at peace. Imagine yourself in that place. Picture it clearly and think about what you can see there, what you can hear, how it smells, how it feels to be there. Get the image fixed in your mind so that you can call it up whenever you like.
Now, when you are feeling stressed, imagine yourself opening a door which takes you to this place. In your mind picture yourself stepping into this place and soak up the atmosphere, feel the relaxation wash over you. You just need to do this for a few moments, and then return to where you were or what you were doing before.
With the onset of NES/NEAD attacks, people have often noted their breathing becoming fast, shallow and difficult. This is hyperventilation which can make things worse by restricting the oxygen flow to your body, causing you to feel light headed and even more detached from reality. Abdominal breathing can help you to feel calmer and more grounded and this technique can be used at any time you need to stop and regain control.
Sit comfortably with one hand on your abdomen below your belly button.
Slowly breathe in through your nose and, as you breathe in, feel your stomach expand beneath your hand.
Pause for a count of 3.
Slowly breathe out through you nose and as you do so notice your abdomen deflate.
Rest for a moment.
Repeat for 20 breaths or until you feel back in control.
PREPARING FOR SEIZURES
Many people with NES/NEAD can feel embarrassed or awkward about their attacks and it can be hard to explain to people what is happening. As a result, you may stop seeing friends or making plans in public spaces and you may stop going out altogether. This will make you feel lonely and even more vulnerable. As human beings, we are not meant for isolation, we need our tribe around us and we need the support networks we spend so long building.
But what can you do to try and avoid NES/NEAD attacks in the first place? There is no hard and fast rule that you can implement but the following strategies may give you some help in taking control of your seizures.
Explain to friends and families that you have non-epileptic seizures and talk with them about your attacks and your worries about them, just as you would with any other medical condition. Show them any information you may have about this condition and talk together about the support that they could offer.
Make contact with other people with the same and similar conditions . Be open and honest with these people, it can sometimes be easier to open up to strangers than to close friends. Discuss the condition with them and ask about their strategies for tackling attacks.
Don’t wait until the seizures stop to renew your subscription to real life. Plan outing and treats for yourself, do things that you have previously enjoyed. Don’t overdo it, but give yourself a fighting chance. The more you push yourself to engage with the real world, the easier this will become and, as a direct consequence, you may feel happier and more fulfilled.
Prepare yourself for a bad day. When you are out and about, there is unfortunately no law saying that things won’t go wrong. You need to ensure that you are prepared for this eventuality. Carry ‘Stickman Solutions’ cards with you, identify a place or safety, ensure that your friends are aware of the potential.
Many people who have non-epileptic seizures seem to spend all their time looking after others but ignore their own needs for rest, space, enjoyment, support, exercise and a balanced life. As a result they become stressed, tired and even resentful, and have more seizures. If this applies to you - think about delegating appropriate tasks to appropriate people
We have talked about what you can do in the moment of an attack and strategies to potentially limit the impact of the attacks, now we’ll look at what others can do to support you. Your friends and family often feel confused and anxious themselves when their loved one is diagnosed with non epileptic seizures. They may feel helpless and not know what to do. However, there are many ways that they can help you recover.
DURING AN ATTACK
It is helpful if your seizures are dealt with in the most low-key manner as possible. It is more upsetting and embarrassing for you if each one becomes a major drama.
- Stay calm and try to stop others from panicking.
- Ensure that the area around you is safe, remove any dangerous objects.
- Protect your head by placing a jacket, jumper, or pillow underneath it.
- Not restrict your movements as this can be frightening to you and could cause injuries.
- Speak to you calmly, explaining where you are, what is happening and reassuring you that you are safe.
- They should not call an ambulance unless you have injured yourself or the attack goes on for a long time. (If an ambulance is called by another, explain to the ambulance crew that the seizures are non-epileptic. This helps them to understand how to treat you)
HELPING YOU BECOME MORE INDEPENDENT
This can be hard. Close family and friends will have been looking after you since the start of your symptoms which may have been several years previously. As a result, they may feel anxious about you striking out on your own, particularly when you do something that they feel may put you at risk.
Whilst preventing you from becoming more independent can have a negative impact on your condition, you need to understand their concerns and hesitation, even when it feels frustrating and claustrophobic. They have held your hand throughout your illness and letting go can be incredibly hard so you need talk things through very carefully to find a happy balance.
For example, you can work together in finding ways to explore your independence (looking at support for travelling on public transport or accessibility in shopping centres etc.) will help you do things for yourself, as well as reassuring your family and friends
The people close to you may also try to protect you by stopping you from getting upset. They may think that this will cause a seizure, or they may just find it hard to see you upset, when in fact, seizures are often linked to feelings that are not expressed. So, if you need to talk about your feelings or have a good cry the best thing that friends and family can do is to listen, encourage you to talk and try to understand.