NEAD - help and advice needed

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.

Parents Reply

  • Hi Deepthought,

    Hey Starbuck! :-)

    I am currently suffering seizures approximately once every fortnight, which might not sound like a lot, but I find when I have one it knocks me about for days so I never truly recover properly from them.

    When it comes to having seizures, it is not about how many you have, it is the magnitude of them that is the real problem ~ hence the recovery issue. Not being able to sleep because of seizures is one aspect of that for me.

    The last one I had was the worst I have had so far - I ended up having a full body seizure, which is unusual, which then lead to me being violently sick repeatedly.  Hasten to say it was not pleasant and made me feel extremely ill and lethargic days afterwards - I would not wish it on my worst enemy!

    I so know just what you mean.  

    Do you find you have builds-ups to your seizures, such as auras or feeling unwell? 

    I have seven ranges of auras all the time involving increasing or decreasing intensities of which (luminous, geometric and particulate), as varies in relation to how stressed and tired I am, and the more stressed and tired I am  ~ the more seizures I have.

    In terms of feeling unwell ~ I adore getting viruses as I do not notice the aches and pains with the seizure hangovers, but joy of joys I actually instead get to sleep! :-)

      I have noticed I get more snappy than usual and everything starts to feel like hard work and more effort than usual.

    Perhaps learn to notice how hard things are getting before you get particularly snappy, as it helps to better gauge and range your psychological and physiological activities, before things get too seizure themed.

    This will lead to me waking up one morning feeling incredibly lethargic - if it wasn't for the fact I had to go to work, I would happily stay in bed, in fact some days I have had to work from home as I have no energy at all.

    I get up and go to bed day in day out no matter what, as staying in bed would mean offsetting my sleeping, activity and resting regime ~ which I maintain to keep the mind-body relationship on the go and low in seizures. Sunday is my major no energy exhausted day, and Monday to Wednesday are increasing energy and least exhausted days, with Thursday to Saturday being my more energetic doing stuff getting exhausted days.

    Noise seems to be my trigger as I have only had these when I have been exposed to noisy environments, such as open plan offices and noisy classrooms etc.

    Light is mine which is why I am a night-shifter arising between two and three in the afternoon, and retiring for rest or sleep about six and eight, in the morning. Past eight and before three the intensity of the light (ultraviolet to be specific) is too much, and I am most comfortable from eleven at night to six in the morning. This duration of time allows me to calm down enough to either rest or get some sleep.

    I presume you have pondered noise cancelling headphones or possibly even have some already? If you know not about these ~ here is a link from Wrong Planet on the subject:

    As it stands at the moment I have been discharged from neurology and referred to an epilepsy specialist to undergo ACT therapy.  Without sounding dismissive, I am a tad skeptical as CBT never worked or resonated with me.

    It depends mostly with CBT how neuro-plastic you are linguistically, so very good for children but less so for adults ~ yet a really good therapeutic practitioner can make any therapy work. Stating that though, CBT on every occasion was not an effective treatment for me. Different strokes for different folks and all that.

    Has your GP suggested any interventions to help you manage the seizures.  I am aware medication isn't an option with them being psychologically driven.

    We have been working with medications to keep the stress down, beta blockers and such like, but they have not been entirely helpful so did not continue with them.
    I have though been taking CBD oil, which softens and slows the psychological turbulences of my seizures, and takes the edge off my nerve infernos etc. I have been taking it for about a year now, and use about a third of a small pipette every three, four or seven days. I am going to ask my GP what his opinion on this is relatively soon, and see how that goes.
    What particularities do you notice about having 'aura' experiences and seizures yourself?

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