Below are some examples of the lives of patients with NEAs. The accounts are fictional but are based on our long experience with NEAD. The examples demonstrate how life events and relationships can contribute to NEAD. There are more examples of people who have tried to make sense of their NEAD and get on with their lives in the documentary "dis-sociated" which you can watch for free on YouTube.
Helen first went to see a neurologist when she was 40. She had been experiencing her attacks for over two years. The attacks were happening quite irregularly, but averaged out around one per month. In her attacks she would develop a dry mouth, experience tingling in her hands and then black out. She was usually able to sit down when she got the warning.
She had not wanted to bother a doctor but had bruised her head in a particularly bad attack and sought advice. Her family doctor did not know what to make of her attacks and referred her to a neurologist. Helen took a neighbour along to her appointment because the neighbour had seen some of her attacks.
When Helen and the neighbour had finished describing the attacks to the neurologist, he told them that their description was more typical of non-epileptic attacks than of epilepsy. He seemed to say that they were related to stress. Helen had heard of epilepsy but was confused about the diagnosis of NEAD.
She told her doctor that her attacks had started when her life was actually looking up. She had recently been divorced from her husband with whom she had had a difficult and violent relationship. She had moved back in with her mother in the same house she had been brought up in. She had just been awarded custody of her four children. She had found the custody battle very stressful but the attacks started when this was over.
Helen had always had a very close relationship with her father. Her father had unexpectedly died of a heart attack when Helen was age 13. Helen’s mother had developed severe depression following this. Helen had then taken charge of most of the house keeping and of looking after her younger brother and sister.
She did not allow herself to come to terms with her own feelings about her father's death and did ‘what had to be done’. She continued to support her brother and sister (and other family members) in later life when there were any family problems or when anyone needed help. Everybody thought she could cope with anything.
Helen’s first attack happened when she was watching TV at her mother’s house. Helen said that she had been having a normal day so far and did not feel particularly stressed. Helen explained that all her attacks had happened when she was at home, she had never had one outside or at work and they had usually occurred when she was relaxing and not stressed.
Because of this Helen always tried to keep doing something when at home such as cooking, cleaning or looking after her four small children.
Helen's happy childhood came to a sudden end with the death of her father. She ‘took over’ when her mother was unable to look after her and her younger siblings. Her siblings always looked to her when they needed help. Helen enjoyed being able to help and being seen as a ‘coper’.
Helen's marriage was unhappy and marred by violence. She was unable to admit to anyone how badly things were going for her for a long time because she did not feel that she could share with her mother or siblings how unhappy she was. All the upsets of the marriage were brought up in the custody court hearings.
Helen badly needed support when she moved in with her mother but was still not able to discuss her desperation with anyone. The seizures started when she was physically and emotionally exhausted. She tried to deal with the seizures by keeping herself busy at all times draining her own energies even more.
John was diagnosed with epilepsy at the age of 18. The diagnosis had been changed to NEAD when he was 24. John can experience as many as six attacks a day in which he loses consciousness and shakes. His attacks last a few minutes.
John left college when his attacks first started and has never been able to find work because of his attacks. He lives at home with his parents and younger brother. Recently the family have turned one of the downstairs rooms into John’s bedroom and fitted a bathroom so that he does not have to climb the stairs.
John feels that he is unable to look after himself because of his attacks and does not like to be left alone for long periods of time. He rarely leaves the house because he is embarrassed about having an attack in public.
John’s attacks started shortly after he was involved in a car accident with his school friends. The driver had lost control of the car and driven in to a wall. John had hit his head badly. He developed panic attacks and found it difficult to sleep for several weeks. He continued to have memory problems and severe headaches for over a year afterwards.
John says that he was always a quiet child. He did not have many friends at school and was bullied by his classmates. John used to choose to stay inside with his family rather than play out after school to avoid the bullies.
John never had much self-confidence as a child. His confidence was undermined further when he was bullied at school. When he did make an effort to blend in and go out with his friends he became involved in a car crash.
After the car crash, John developed a range of symptoms. He was aware that some of these (such as the difficulty with sleeping and the panic attacks) were related to anxiety after the accident, but he thought that his other symptoms (the memory problems, headaches and seizures) were a consequence of his head injury.
The doctors he saw at the time seemed to confirm this when they made a diagnosis of epilepsy. John's confidence was severely shaken by the experience of the accident and the ongoing symptoms. John was particularly worried about having seizures in public because of his previous experience of bullying. The less he went out on his own, the more anxious he seemed to become.
Janet first developed her attacks after a bad fall down the stairs at home which caused her to break her arm. On returning home after a short stay in hospital, Janet began to worry about using the stairs in case she fell and hurt herself again. She experienced episodes of panic and trembling at the thought of falling again.
In situations where Janet needed to use the stairs, these attacks could develop in to episodes in which she experienced loss of control over her body and limb jerking.
Once or twice she even lost control over her bladder. Janet lives alone but her friends and family who have observed an attack explain that Janet seems conscious during the episodes, although she has no memory of what happened after the attacks.
Janet ended up spending quite a lot of time on the floor because she was afraid she might fall and hurt herself. She would crawl up and down the stairs and would avoid going to places where she would have to use stairs in public.
Janet was referred to a neurologist who after listening to accounts of the attacks, diagnosed her with NEAD. Janet explained to the neurologist that she spent time in hospital in her childhood. She needed a number of operations on her legs after she had been involved in a serious accident.
She has bad memories of being alone in the hospital, of being in severe pain and having to use a wheelchair for a number of months. She recognised that she was fearful of experiencing this again.
Janet’s fall and broken arm reminded her of the traumatic time in her childhood in which she suffered severe pain from operations on her legs. These memories made Janet feel anxious about the possibility of falling again and would cause her to experience episodes of overwhelming panic.
She maintained her anxieties by crawling in the home and avoiding the stairs. She had become isolated and depressed because she was not going out and meeting her friends.
Martin was diagnosed with NEAD at the age of 46. His symptoms had started five years previously. Before his first blackout, Martin had been under extreme pressure at work. He had noticed poor concentration and forgetfulness.
His first blackout occurred at a business meeting. He noticed blurred vision and struggled to get his words out. He could not recall the names of people around him and felt hot and tired before collapsing. He looked like he was asleep and recovered after one minute. The attack did not involve any shaking.
He returned to his hotel room but later had no recollection of doing so. The next day he went to the hospital for a check up, where a doctor noticed he had a droopy eyelid.
Martin was unable to work for six months because of persisting fatigue. His attempt to return to work failed because of fatigue, blurred vision and further collapses. Tests for a cause for his fatigue came back negative.
After 20 sessions of psychotherapy, Martin was able to end his habit of working extremely hard and at all hours and his tendency to ignore emotional experiences or physical symptoms of stress with his fatigue and collapses.
He learned to read the signals from his body and his own emotions better. He was then able to pace himself and recognise his limits. He stopped having blackouts.
Martin’s parents had always been very strict with him and had not been particularly sensitive to his emotional needs. They encouraged constant competition between Martin and his younger brother. Martin therefore grew up with a strong desire to succeed in life and a limited ability to recognise his own emotions or his limits.
He avoided emotional challenges through his commitment to work. His reluctance to express his emotions and ask for support meant that he became exhausted and unable to manage in his work to meet his own demands.
It can be very difficult for people with NEAD to understand how a problem that feels and looks so physical can have an emotional cause.