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

  • 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.

    Same here.


    I am awaiting the results of a blood test to check for encephalitis, but it highly unlikely this will return a positive result.

    When encephalitis (inflammation / swelling of the brains or bits of them) is caused by a bacterial infection, or an autoimmune reaction where immune system attacks the brain systems, both infections and autoimmune reactions can be medically treated.

    Facial Brachial Dystonic Seizures are described (in medical literature) as involving Limbic Encephalitis.

    Due to the high incidence of stress for us Autistic types, involving Cortisol as being an alarm hormone (that works with the brains to activate the freeze, flight or fight reaction) the mind-body relationship's bacterial colonies become in number compromised, causing immunological / genetic disorders or difficulties over the long term.


    My Neurologist is aware they are increasing and has now referred me to a specialist epilepsy nurse for follow up.

    Maybe consider discussing with your Neurologist, Specialist Epileptic Nurse and or GP about taking advanced (14 or more) multi-strain bio-culture capsules (available from chemists etc*), and see if perhaps that reduces the incidence rate or severity of the seizures and their side effects. I have found them really useful myself.

    * One product range being:


    https://www.bio-kult.com/


    Bio-culture capsules do not generally interfere with medications, but it is well worth checking with qualified health professionals before giving them a go, in that medication dosages may become more effective and so fourth, so keeping that in mind is useful. This is of course assuming that you are not already doing bio-culture stuff, or that you might possibly consider doing so.

    I do rather hope though you are just visiting the experiential range of seizures, rather than joining the club sort of thing.

    One thing I know very much for certain is that stress causes me to have seizures, and I am somewhat surprised that you have not (at least in the short term) been signed off sick ~ given the increasing frequency of the attacks, and how difficult a time you are having with it all. :-(

    In the mean time perhaps regarding stress and how to minimise it before, during and or after seizures ~ consider the information provided via following the pdf link:


    Abdominal Breathing

    When we are worried or anxious we tend to breath quickly taking short breaths high up in our chests. Abdominal breathing is a way of getting control over your breathing to help you calm down. Practice this at home and then use it whenever you start to feel anxious or when you might go into an attack.

    Follow these instructions:

    1. Use a comfortable, quite room.

    2.Count one, two, three as you breath in and think relax as you breath out.

    3. Focus your attention on breathing and counting.

    4. Use a normal rate and depth of breathing.

    5. Keeping your chest relatively still, expand your abdomen (below your navel) as you breath in and pull your abdomen in as you breath out, trying to breath all the air out of your lungs.

    6. Count up to 10 breaths and then count backward down to 1.

    http://www.nonepilepticattacks.info/downloads/abdominal_breathing.pdf


    I do this all the time myself, with exception to step 6 as counting is so very much not my thing, more especially during seizures, and I rather have the hang of the exercise so I do not count at all excluding thus also step 3. 

    Another similar 'meditation' (mind focusing technique) should you or anyone else finds it interesting or useful, is available via the following link:


    https://themindfulnesssummit.com/sessions/head-heart-gut-check/


    Oh ~ another thing I find useful after seizures, for recovery, is having protein shakes from this particular company:


    https://naturesplus.com/products/productdetail.php?productNumber=4573


    If any of that helps perhaps?


  • Due to the high incidence of stress for us Autistic types, involving Cortisol as being an alarm hormone (that works with the brains to activate the freeze, flight or fight reaction) the mind-body relationship's bacterial colonies become in number compromised, causing immunological / genetic disorders or difficulties over the long term.

    Thank you for the very detailed response - this really means a lot as I have very little to work with at the moment to try and manage things myself.  I have had my cortisol levels tested in the past and they were very high back then - I doubt much has changed since then so I imagine my cortisol levels are still fairly high.

    Maybe consider discussing with your Neurologist, Specialist Epileptic Nurse and or GP about taking advanced (14 or more) multi-strain bio-culture capsules (available from chemists etc*), and see if perhaps that reduces the incidence rate or severity of the seizures and their side effects. I have found them really useful myself.

    I suffer with IBS/IBD so I now eat a vegan diet and have taken bio-culture capsules in the past.  I didn't notice a massive change to my digestive system, but if there is evidence to show it reduces the incidence rate of seizures and other side effects, then I am more than happy to try it again.  I'll speak to the nurse when I finally get an appointment.

    I do rather hope though you are just visiting the experiential range of seizures, rather than joining the club sort of thing.

    I do get auras I suppose in that I sense a very strange feeling come over me when I have a seizure coming on - but this often progresses into a facial brachial seizure, which are not nice.  I then suffer with mutism, temporary paralysis on rare occasions and fatigue combined with memory loss.  It really is awful.  :-(

    One thing I know very much for certain is that stress causes me to have seizures, and I am somewhat surprised that you have not (at least in the short term) been signed off sick ~ given the increasing frequency of the attacks, and how difficult a time you are having with it all. :-(

    Due to my job being very demanding, it is unrealistic to reduce the stress it can cause.  I try not to stress over things I cannot change, but my job will always be stressful.  I am looking at what I can do to try and make things better at home, but this is being complicated by the fact I can no longer drive and be easily independent.

    Abdominal Breathing

    I used to use the Calm app regularly and I found this helped my well-being in general, so there is no harm in trying to adopt this into my routine again.  I can then monitor whether the occurrence of the seizures and other symptoms reduces. 

    Oh ~ another thing I find useful after seizures, for recovery, is having protein shakes from this particular

    I always have massive sugar cravings afterwards, so I might give your suggestion ago, as this will prevent my sugar levels rocketing and then crashing, which only makes me feel worse.

    So do you suffer with NEAD as well then or do you have epilepsy? 


  • Really sorry for my delay in replying to your question, as things got seriously heavy going for me with the seizures, and all my linguistic frameworks got fraggled ~ so writer's block and then complete word jumbles kept on happening. 

    Anyway:


    So do you suffer with NEAD as well then or do you have epilepsy? 

    It was thought I had epilepsy hence the ECG and MRI scan, and it was expected to be lesion central brainwise, but there were no lesions at all.

    The next step was getting referred for an Asperger's Syndrome diagnosis, at a neurological unit, and diagnosing the seizures.

    I got diagnosed with ASD, and because they had lost my referral notes, they discharged me ~ which left either NEAD or PNES (Psychogenic Non Epileptiform Seizures) to be diagnosed.

    Until I can get myself organised to do be referral back to the neurological unit, I have gone with PNES as it covers my symptomology point for point, and actually describes the nature of the condition too ~ the more psychologically stressed I get; the more seizures I have.

    When I got diagnosed with ASD, I spent three months having day in day out seizures as a hangover, and I was only at the neurological unit for a few hours ~ so spending at minimum one or two nights there is something I have not felt too inclined to follow it up yet, quite reasonably enough both me and my GP agree.

    How are going things with yourself currently?


  • Hi Deepthought,

    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.  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!

    Do you find you have builds-ups to your seizures, such as auras or feeling unwell?  I have noticed I get more snappy than usual and everything starts to feel like hard work and more effort than usual.  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.  If I don't rest at this stage and push myself, then I will have a seizure.

    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.

    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.

    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.


  • 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:


    https://wrongplanet.net/noise-cancelling-headphones-for-autism/


    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?

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:


    https://wrongplanet.net/noise-cancelling-headphones-for-autism/


    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?

Children
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