NEAD Trust: Non Epileptic Attack Disorder

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NEAD FOR A YEAR AND NO TREATMENT WORKED PLEASE HELP

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sorbs


Newbie
Newbie
Hello
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.

garry palmer


Silver Member
Silver Member
hi sorbs, sorry to hear that you feel this way but it seems to be very common with all nead suffers, and you have disscribed how i feel with my attacks, all the Drs ive seen are in the same position having no idea how to deal with this condition,but with this site you are never alone and we all can relate to you, in our own way, the only advice i can give you is get a good surport network around you and ask all the questions you need to find your own answers, then you can teach the Drs whats wrong and make shaw they no, and never give up on finding the answers you need

Marietherese


Star Member
Star Member
Hi sorbs. I have suffered from epilepsy for 35yrs which is under control. Then about 3yrs ago i started having these attacks i was in and out of hospital cos these were happening a lot. I was sent to another two hospitals the last one did eegs one i pulled wires out of my head the next time they glued the wires to my
Head had another attack in that one as well the attacks were happening all day every day i was videoed my consultant went over all the tests and told me i was suffering from n.e.a.d. the hospitals treated me appallingly. My consultant sent me for cbt which didnt help me either nead is psychological meds cant help this condition i found out what was
Causing these attacks and it goes back 30yrs ago then i found the proper counsellor for abuse i am suffering badly with depression but i have not had an attack in 4mths now. So it was something buried deep in me. So i found out the cause of mine. I hope you can get yours sorted to. All the best

4 thanks a lot on Thu Jan 16, 2014 5:34 am

sorbs


Newbie
Newbie
Thanks for your replies. It helps to know I am not alone, take care

rollem

avatar
Member
Member
Hi sorbs,

Just to say we all support each other and we are here for you. My wife read through the posts with me and we were amazed how much that you go through is similar to me and my episodes. This is a reassurance that our episodes are real, medical and not 'put on' as some ignorant people might tell us.
I have had my highs and my lows during 12 years of NEAD episodes after rolling a car. Some days it gets me down, other days I can cope, even when I've had attacks. Some days I have non, some days I have many. Sorry if I haven't come up with a full answer, only friendship (even at a distance) and hope this gives you some comfort.

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