Our daughter was referred to the Neuro team where they decided the seizures leaned towards a condition called NEAD. We were totally unaware of the existence of this condition and then had to educate ourselves about it, as I believe the more knowledge gathered makes you less fearful of what is a very scary, frightening and isolating situation.
Seeing someone in a full ‘tonic clonic’ seizure is a scary thing to witness, the feelings of being powerless and not able to help is beyond upsetting. Still with these seizures ongoing, our daughter has now just completed a block of dynamic psychotherapy, which is thought to be helpful for this condition of NEAD. We can only keep our fingers crossed and be hopeful and glad that this is a positive step and something in the way of support.
Approximately seven years ago I saw a consultant neuropsychiatrist and a consultant psychologist and together with the epileptologist, an answer for the seizures, the blackouts, the amnesia, the depersonalisation and ‘splitting’ as it was described to me, was finally diagnosed as dissociation.
Since the diagnosis and the treatment, many things have surfaced which I had kept locked in behind a door deep within my mind. I am not receiving any more treatment. It seems that there is nothing more to offer. I have been recommended for counseling but I am still waiting as it appears not every professional in the counseling field would be happy taking on a case such as mine.
The thing I hate most about this disorder is not just the effect it had and still has on me but on all those people who over the years have lived their lives alongside me.
Two weeks ago Jade had 12 seizures in one day and after her second seizure she lost all feeling in her arms and legs for 12 hours. Again we were taken into hospital via ambulance. The A&E staff were amazing. Then the paediatric consultant came into A&E and asked myself and my husband if we knew what was going on and his answer was “Well she’s faking this.” Well you can imagine our reaction!
Jade has now been excluded from school which she was attending 2–3 hours a day as the staff couldn’t cope. We really feel that with NEAD there is just no help and not enough information out there. This is not fake this is very, very real and affects everyone's life around the person suffering.
There is a lot to learn from other people's experiences with NEAD - not least that you are not alone. The book In Our Words: Personal Accounts of Living with Nonepileptic Seizures is a collection of over 100 accounts from around the world provided by people with personal experience of NEAD.