Sunday, 27 May 2012

The Walls of Hermitage Road (aka Life with Non Epileptic Seizures)

So you may well have noticed, I've not really been around here much at all. If you follow me on Twitter, something you may well have noticed is a heck of a lot of frustrated tweets about being ill and having seizures. I haven't really had the chance to properly explain what exactly it is that's been going on to a lot of people, and I figure here is the easiest place to do it.

A couple of months ago, I was watching a film with my best friend and some other wonderful, lovely people. We'd been chilling out on Easter Monday, eating a copious amount of chocolate (thank to my friend Chris), playing Cranium and had settled down to watch a film. We'd partied pretty hard over the weekend, so decided a quiet, sober Monday was in order. There'd been some varnishing going on, which meant the place was pretty fumey, so we had a couple of windows open too. I was pretty happy and incredibly chilled. I was going back to work the next day after a couple of shitty weeks in which my mum had gone to hospital, we'd been told my sister had cancer (turns out she didn't... but that's another story for another time) and a few bits of my social life had got a bit stressful too.

Halfway through the film, I freaked out massively at a domestic abuse scene, and squeezed poor Jed's hand so hard I think I almost broke it. A bit later, I said I'd started to feel woozy. We figured it was the fumes and the weird tunnel scenes (we were watching Being John Malkovich if you're wondering). 5 minutes later, I collapsed dead weight onto Jed, fell to the floor and started having convulsions. Nothing like this had ever happened before, although thankfully we have a few epileptic friends, so the people with me knew the basics of how to deal with someone having a seizure and called an ambulance straight away. The only way I can describe the whole thing is as a fucking weird. I felt disconnected from reality. I was vaguely aware of what was going on, I didn't pass out, but even now, it's a fuzzy and quiet hazy memory, almost like I was incredibly drunk. I couldn't speak, even though I wanted to, and, quite understandably, I panicked. After 5 minutes of convulsions, and another 5 minutes of sheer panic, the ambulance arrived and did my obs. Everything was fine. Blood sugar normal, slight sinus arrhythmia to my ECG (which is a new thing), blood pressure perfect. I was still spaced out and not quite making sense so off to hospital we trotted, where I promptly had another, much smaller seizure and got taken into resus. The queue was horrendous, so I self discharged after feeling much better.
What followed was a week of other smaller seizures, eventually resulting in my doctor deciding I needed three weeks rest, sending me for an MRI scan and getting me fast tracked for Neurology. We were told to act as though it was epilepsy, but every doctor I saw seemed confused. At times, it felt like they thought I was putting it on. I was scared, frustrated and exhausted. Jed was an utter hero and looked after me pretty much 24/7. I started to see the warning signs for when I was about to have a seizure, and we successfully managed to stave off quite a few. Getting outside, breathing deeply and being reminded of where I am all helped. I managed to go I think 4 or 5 weeks without a seizure just by using these techniques.

Eventually, I got to see a neurologist. For the record South Londoners, Dr Cocco is amazing. Completely mad, a little tricky to understand but amazing. If you get him, know that you're in safe hands. I explained the whole thing again, with the slight dampened spirit of someone who's had to tell this story more times than they care for, and waited for him to laugh at me or to tell me there was nothing he could do because I was clearly making it all up (it might sound paranoid, but this is what happened last time I saw a neurologist). Instead, he asked me one question - "Have you ever been sexually abused?" It took me by surprise. Sadly, along with many other women I know, I have, and I went on to explain the various times and forms it took. He listened and then asked me another question "Aren't you wondering why I'm asking you this? After all, I'm a neurologist. This isn't my field."
I had been wondering, of course. I'd also been making the slow connection myself of the troubling domestic abuse scene and some of the things I'd been telling him. The next words that left him mouth were the most important words of all "I want you to know that you're not making these seizures up. They're completely real. It's not all in your head." I could have cried.

Dr Cocco went on to explain I'd been having something called Non Epileptic Seizures. There are a fair few names for these, with one of the common names for the condition itself being Non Epileptic Attack Disorder, or NEAD for short. It's a condition that not much is known about, other than the fact that unlike epilepsy, the seizures aren't caused by electrical impulses in the brain, but instead are a physical response to both physiological and psychological triggers. It's a condition that generally starts in early adulthood, is more common in women and can often affect people with a history of trauma. I repeat though - these are not psychosomatic or "pretend" seizures, nor are they just an extended form of panic attack. They're very much real. If I catch my warning signs early enough, quite often I can bring myself back round from one, but not always. Around 15-30 people in ever 100,000 have NEAD, and over half of people taken to hospital with suspected epilepsy are diagnosed with it.

The seizures are, as already suggested, slightly different from epileptic ones. For me, I have convulsions and rapid breathing, often accompanied by an inability to speak (although I can communicate. They're dissociative in nature, so I "space out" quite heavily before, during and after them - feeling completely distant and detached from things. After a seizure, it can take me a couple of days to feel properly "normal" again - I'm normally exhausted and aching, with a grim headache and crappy sleep.
The reason I've called this post The Wall of Hermitage Road is because that's where I feel like I've spent the bulk of my week. I had 8 seizures last week, which was both frustrating and tiring, so any walk to the shop or attempt to go back to work saw me spending a lot of time sitting on various walls along Hermitage Road trying to making sure I didn't have a seizure (or, in one case, having a seizure whilst being looked after by some lovely bin men).

For me, there's two important reasons for writing this somewhat rambly post - the first is to educate people about NEAD, and explain a little of what you can do if you're a friend who's likely to spend time with me and I end up having a seizure. The second is that I refuse to let this run my life - I don't cause or bring on my seizures, but I can certainly do things to help myself get as strong and healthy as possible.

So, first off: what can you do if you happen to be with me (or someone else with NEAD) whilst I'm having a seizure?

  1. DO NOT CALL AN AMBULANCE - unless I do something that injures me or unless I communicate with you that this isn't a normal seizure. Wastes my time, wastes their time. If an ambulance does need to be called (for example if the seizure won't stop after an extended amount of time or if I'm injured), make sure they know it's a non-epileptic seizure.
  2. Try to stay calm - as selfish as it sounds, having someone else panicking really doesn't help. Speaking to me in a calm and reassuring way will bring me round far quicker.
  3. Make sure I'm safe and try to place a pillow or something soft under my head but don't hold me down. It hurts me and there's a high likelyhood it'll hurt you too. If you can, the recovery position is the safest way for me to lay one it's calmed down enough.
  4. Talk to me about where I am, what I can see, what the day is, who I am, who you are... these all help. Afterwards, I might be a bit upset and will probably still not quite seem "with it". This is all normal - again, try to stay calm and talk to me. Do something to try and focus my attention. Let me stay in the recovery position. Talk to me about something that interests you - my friend Slinky once lay on the bed, stroking my arm and talking to me about cameras, processing methods and f-stops after a seizure. It was incredibly effective. 
  5. Be aware of my triggers, and try to make them stop if they're near me. Sometimes, it can just be a perfectly normal situation and a seizure happens. Things I know trigger them include flashing or strobing lights, sudden loud noises (ie fire alarms) and two sets of conflicting noises (so someone singing whilst someone else is watching a loud film).
And what am I planning on doing? Mainly just lots of looking after myself - getting back into yoga practice, starting ballet classes, starting to meditate, hula hooping, going for a spa day (funds allowing...), staying away from stressful or triggering situations, eating more healthily... maybe running, although at the moment I'm a bit fearful of it. At the moment, it's frustrating because my seizures are impacting my work life and my social life. There's a fairly high chance I have to cancel on people if I make plans with them at the moment, because they're not stable enough to be fully under control. I had to cancel a holiday I was planning on taking because after 8 in a week, I'm not entirely certain heading in an aeroplane to another country is the best idea. Despite all of my frustration and my anger at my own body, I'm almost certain that I'll pull through and start to live life normally again. I'm fortunate enough to be surrounded by incredible friends and have a wonderfully supportive work place. Mainly what I want is to feel healthy and happy again. Any suggestions of other things I can do to make this happen are gratefully received :)

You can find more information about NEAD here or in this handy NHS booklet
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  1. The seizures are an unfamiliar symptom to me, and they sound horrible. I do, however, suffer from ME which has a long history of doctors disbelieving or dismissing the illness as psychological (not that that would make the illness any less distressing, of course) so I *completely* get how horrible that experience is

    1. Hmm, browser broke.

      If you need a chat or a friend who will guarenteed (tried and tested!) not panic around seizures then let's do some things. Including munchkin! :)

  2. Such an informative post - i didn't even know this existed and how it could be triggered. Thanks for sharing xx

  3. You wrote this really well. I hadn't heard of NEAD but think it's great you have made some of us aware. I am so sorry for what you are going through, it's scary how quickly things can change and remind us how our health is truly our wealth. Just remember that means they can change quickly for good too. Take care xox

  4. Thanks for writing about this so eloquently. I've experienced non-epileptic seizures before, as well as symptoms of anxiety that include intense spasmodic episodes and fainting, and I hope people will read your article and learn from it.

  5. Thanks very much for this post. Is this the same as pseudoepileptic seizures? I know two young people who suffered those, including my youngest son. In both cases it was associated with anxiety over attending school. In my son's case it followed on from a period of daily fainting (syncope) - sometimes dozens of times a day - but fortunately thanks to the internet I knew it might happen, otherwise I would have been absolutely terrified. Of course we got the usual scepticism from so-called health professionals who thought it was all a put-on but like you we were lucky enough to see a sympathetic neurologist (the on-call junior neurologist at the children's hospital) who could explain the difference between epilepsy and pseudoepilepsy and was very kind and reassuring. No-one though gave us a copy of that helpful leaflet, wish they had.
    I suspect this condition is much more common that people think. I hope you can take some encouragement from the fact that my son is now absolutely fine and the fits have completely stopped. The key of course was sorting the underlying psychological problems. I think you are doing all the right things, but you should maybe consider some kind of counselling or therapy to help you deal with the abuse issues. Unfortunately good professional counselling can be really really hard to find so long talks with kind friends over a nice bottle of wine is possibly your best bet. I am sure you will get better from this.

  6. I didn't even know this existed. Thanks for writing about this.


Your comments and thoughts are really appreciated :) Thank you for taking the time to chat xx