I Have been having fits or non epileptic seizures (call them what you like) for a year.
I was having as many as 40 attacks a day. I saw a neurologist who said he thought they were non epileptic and I had an EEG with video telemetry. The flashing lights triggered attacks which were video taped and the Neuro said my attacks were interesting as I was unresponsive but showed no epilepsy.
I was referred to a neuropsychologist who asked lots of questions and told me I had NEAD. She said that they do not really understand the brain but that they know that certain parts of it shut down with stress.
That's what was happening to me. My brain was shutting down like a computer and then rebooting causing me to be very tired, ,confused, unable to string a sentence together, forgetful, have poor co-ordination and basically be unable to function without sleep after attacks.
I was given a leaflet that explained that the attacks are like a pressure cooker effect. This made sense as I get a build up of pressure in my head that is unbearable before an attack and my vision goes bad so I cant focus and I shake and feel sick. Strangely after an attack the pressure is relieved so its sometimes a relief to have an attack. I do hate them.
I was told that she thought my fibromyalgia pain and fatigue was likely to be a trigger for my attacks and she said it was good that I was having CBT.
I was given info about this site and I was told the hope was that the attacks would reduce in the future so that I could manage them more.
Unfortunately I continued to have daily attacks in multiples or spread out over the day. I was forced to medically retire from work as I could not work with my fibro and the attacks daily.
I have completed 20 weeks of Cognitive Behavioural Therapy to help with my depression. However this has had no impact on the severity or frequency of the attacks. I have tried beta blockers and antidepressants but they have not helped the attacks.
During an attack my arms jerk, my head jerks and I cannot open my eyes. I am completely paralyzed but can hear what is going on around me. The attacks cause my face to droop, I drool, my jaw clenches shut, I choke and I get an excruciatingly painful headache. Coming around I stare into space and I am unresponsive throughout. I can take a hour to come out of my attack or go from one to another.
They have completely taken over my life and I do not know what to do to help as I have tried relaxation, distraction techniques, tried sensory grounding but nothing has worked.
Nobody I speak to has heard of NEAD and my therapist found out another colleagues patient had it so passed on the leaflets I gave her from neuropsychology, but nobody can help. My poor GP is dumbfounded as it seems to me that once a diagnosis of NEAD is given that's it.
If we had epilepsy we could have our attacks controlled with meds. I sometimes find myself wishing I had that instead.
Does anybody have any advice to help me, have you read any good books about the condition? or had any treatment that's worked.
To all those out there with this virtually unknown illness I sympathise with you and wish you all the best for this year and hope that you improve some.
Thanks for reading this, sorry its long but I do not know where else to vent my frustrations.