Presumed Generalised Epilepsy
At the age of 17 I had a seizure, ostensibly out of the blue. It was late on a Tuesday night and numerous factors delayed us from arriving at the hospital till sometime after midnight.
Neither of my parents’ families had any prior history of seizures and I was seen as somewhat anomalous in that regard, a few preliminary tests were conducted by paramedics at home and nurses at the hospital, but given the timing there were some tests that could not be conducted till the next day as the technicians were not on site. We were unable to take the time available the following morning and as a result were put on a waiting list for further tests and follow up consultations.
The process stalled over the following two years, in which time I would have a further 3 seizures, and my diagnosis was being handled as “Presumed Generalised Epilepsy”, which stuck for a great many years to come.
After a continuing series of stalls in the investigations of my seizures, along with conflicting opinions from neurologists, I eventually lost track of the investigation myself and throughout my early twenties lived with the diagnosis of “Presumed Generalised Epilepsy”.
It wasn’t until I was 26 that proper attention was given to my seizures again, a new batch of tests were scheduled, and as a precaution I was also medicated for the first time at the age of 27.
Scans and tests were showing no classical characteristics of epilepsy yet my diagnosis remained the same, medications that became problematic were replaced with medications that also became problematic, which facilitated more medications leading to further problems.
My biggest fear living with my diagnosis was never a seizure itself, but what may happen during a seizure. About 10% of the time, I could get a sense of some trigger warnings and with focused breathing and remaining still in a quiet place could stave them off, but this was something I learned over time. 90% of the time they would come with no warning, or non that I could sense and, on these occasions, I would often injure myself as I collapsed to the floor.
In May 2010 I suffered a head injury after a fall during one of these collapses which hospitalised me for 3 days and left me mildly brain damaged.
The diagnosis of “Presumed Generalised Epilepsy” had never sat well with me and intuitively always felt wrong, this was something I was never able to express fully as I found it difficult to put into words. I wanted to know if I could possibly not be Epileptic, but have some other condition that presents as Epilepsy. This was taken as denial of the diagnosis, which it was not at all. I have seizures, of that I can not deny, I do not deny that I have seizures, that is a fact.
For the next 3 years I oscillated between periods of employment and periods of sickness claiming ESA, scans were ordered again, medications were changed or increased or both and my diagnosis remained the same. After my brain damage my mental health took a downward spiral, this led to suicidal ideation and several attempts on my life.
In June/July 2013 I had 2 seizures in close succession, one with very little injury, and one with considerable injury. At this time, I was working full time working front of house in a catering job, I was also volunteering on my days off and between shifts for a local charity. I was advised to restrict my activities which would mean having to give up volunteering or work as both were deemed too much.
Non Epileptic Attack Disorder
This recommendation devastated me, since the age of 17 restrictions had been imposed on me based on my diagnosis, which for me the word “presumption” always loomed too large, I was never able to learn to drive, computer games were advised against, I’ve never seen a 3D movie, I was disqualified from certain leisure activities, each seizure seemed to bring with it a new set of cautionary restrictions and I no longer felt able to cope with such ultimatums.
Further attempts on my life in July 2014 led to me being signed off work. I’d always worked through recovery periods in the past, but I could no longer go on that way and more attention was focused on my mental health along side the investigation of the seizures.
Because I was experiencing problems with my memory at this time, I was seen by one psychologist with memory focused work in mind, and by another psychologist specialising in cognitive analytical therapy with my seizures in mind.
It was during analysis in the memory clinic that the prospect of Non Epileptic Attack Disorder first arose as a more fitting diagnosis for my lived experience than generalised epilepsy, when discussed further in the psychology department my other therapist concurred that it would seem more fitting a diagnosis and I was finally put onto the waiting list of a specialist in the neuropsychology department with a specific focus on N.E.A.D.
In 2019 I had my first fully confirmed diagnosis for my seizures as N.E.A.D upon initial analysis with the neuropsychology specialist and went on to receive a block of therapy lasting 3 months at fortnightly intervals. A huge weight was lifted after receiving this diagnosis but the original diagnosis still casts a shadow over my medical records, I’m often reflexively still referred to as epileptic. One of my current struggles is having the presumption of epilepsy no longer referred to as a possibility and keeping the focus of future health car focused on N.E.A.D.
Even within the medical profession N.E.A.D. is often either never considered, it is often not known of, or often misunderstood. Attitudes toward N.E.A.D. can be different from country to country and even from hospital to hospital depending on department heads.
The screen shot below is taken from the Sheffield Teaching Hospitals NHS website, link provided below image.
Whenever I’ve found information on UK websites, they seem to nonchalantly deal with the complexities of trauma passing them off simply as “something beyond your control or too hard to bear”.
The screen shot below is taken from the National Library Of Medicine USA website, link provided below image
Whenever I have found information on American websites, there seems to be more focus on what leads up to the diagnosis of N.E.A.D. as well as the negative effects of prior misdiagnosis.
Non Epileptic Attack Disorder is a result of PTSD related events and as such take on a vast array of possible trauma triggers. The commonality of many N.E.A.D. patients is a series of traumas, usually onset in early childhood, repetitive or continuous added traumas can lead to sensitivities of the autonomic nervous system, which controls the fight or flight response in times of unexpected pressure or emergency.
Because the treatment for N.E.A.D is focused around talking therapies and psychological analysis, sadly in this country at this time, there is precious little in the NHS budget for mental health services or the treatment of seizure disorders beyond repeat prescriptions for anti-convulsants or anti-depressants.
There are a vast number of private clinics, treatments and therapies available in the UK, but private health care can be expensive and the treatments and therapies they use are not sanctioned for use within the NHS. This does not mean they are not sanctioned for use in this country, simply that, bureaucratically, the NHS only carries certain administratively approved drugs or engages in certain administratively approved therapeutic practices. This leads to people thinking they either aren’t available or just don’t exist.
While the NHS services help, they help when you get to access them, and between austerity and further government interference since 2010, as the years go by the waiting lists for access get longer.
I continue to receive help through the NHS but in the future I will also be seeking private therapy also.