Published on 12, July, 2020
It is looking very likely that I am due to receive a diagnosis of NEAD (non-epileptic attack disorder) as I currently suffer with facial brachial dystonic seizures on and off.
I would say I suffer with them every two weeks or so, but recently I am suffering with milder attacks more often.
I am trying my best to manage to confusion, irritability, fatigue and memory loss following one of these attacks, but it is getting to the point now that I really am struggling to hold it all together and operate as normal.
It is hard enough normally managing my ASD so that I can work and lead a 'normal' life and be independent, but the frequency of these attacks is adding to the list of things I have to work hard to manage just so I can work to make a living. My independence is everything to me and my life would be much worse without it. To make matters worse, I can no longer drive, so I now have to take public transport (which I struggle with) and get taxis (which I hate and adds to my anxiety) as well as cycle whenever I can (which adds to the fatigue). It's starting to feel like I am fighting a losing battle and I am running out of options and ideas on how to better manage things. I am not deemed 'ill' enough to be signed off sick and to be honest, that is the last place I want to be.
I was wondering if anyone else on here suffers with NEAD? I have now been told there is a 12 month waiting list to be seen by a psychological team that will put me through CBT (been through this umpteen times already and it has never had any positive results) so I am starting to lose hope. My anxiety is now well managed as I am taking Mirtazapine and I don't suffer with anxiety attacks like some of the healthcare professionals were initially implying.
If anyone does suffer with NEAD, how do you manage them or are you symptom free now?
My lifelong dream is to get my pilots licence and I fear this may stop me from ever achieving this, which also weighs heavy on me. I am trying to be positive, but it is becoming more and more difficult.
With the likelihood of Facial Brachial Dystonic Seizures being diagnosed as Non Epileptic Attack Disorder ~ have you perhaps had an FMRI scan, ECG reading and an Autoimmune test done, and is your GP / Doctor / Specialist aware of the increasing frequency of your mild seizures?
Yes I have had MRI scans, EEGs and ECGs. All are fine and show nothing of concern. I am awaiting the results of a blood test to check for encephalitis, but it highly unlikely this will return a positive result. My Neurologist is aware they are increasing and has now referred me to a specialist epilepsy nurse for follow up.