Trauma in a faulty nervous system

Trauma impacts on us at the time (by initiating our fight or flight survival responses) and over time (impacting on how that system responds to certain stimuli). When in a state of fight or flight one part of the nervous system goes into overdrive to do practical things like getting muscles oxygenated for running and dodging. It doesn’t need our body to worry about mundane things like digestion at the time, so the other part of the nervous system which calms things down doesn’t get stimulated in fight or flight scenarios.


That calming part of the nervous system is strongly associated with the vagus nerve. Patients with dysautonomia have faulty nervous systems and so they often have a variety of misbehaving automatic body processes that all stem from the faulty messages the system sends to our brain. Our brain responds appropriately, but, as the messages were wrong in the first place, the brain’s resulting instructions are inappropriate and often make matters worse. This is an ongoing, circular issue.

One aspect of having a faulty nervous system is that the fight or flight tends to not work properly. The tendency is for sympathetic (activating) nervous responses to be overdone and parasympathetic (calming) responses to be underdone. As a result, fight or flight is a pretty common experience for many dysautonomiacs.

A fellow blogger over at ‘Healing from the freeze’ wrote a post back in 2011 which I’ve belatedly come across. Tracy Andrews is an acupuncturist and was looking at the involvement of the vagus nerve in trauma, namely that it kicks in to help us cope by kinda distancing us from the pain, and that mindfulness is therefore very difficult in trauma patients. She also points out that this is important on a physical plane, not just an emotional one, as the experience of trauma affecting the vagus nerve means that we feel a visceral response (a ‘gut reaction’) to trauma. That physical pain and discomfort is now recognised as part of the trauma experience. If this sounds weird just think of how normal it seems to us when we see a TV character’s response to something horrific is often to feel sick or even to vomit. It’s our innards functionality getting disrupted by the nervous system that causes this kind of physical response.

My reason for this post is to inform both mainstream and ‘alternative’ practitioners of the Dysautonomiacs’ experience to trauma as being very different from that understood as the norm. We need professionals to work from a base of understanding that our trauma response is very different from what’s expected, and that any trauma treatments aimed at reducing vagus response and removing the traditional blanket of numbness is actually the exact opposite of what is needed in our case.

Our vagus nerve doesn’t work properly! We regularly get fight or flight responses over the most stupidly small things, but the impact of that is not fleeting or brought under control with ease or automaticity (coz we don’t really ‘do’ automatic processes, or at least we tend to have a diverse array of faulty autonomic responses).

When we experience trauma, we feel all the same gut wrenching pain and anguish that anyone else does, but we don’t get that numbing sensation that often initially shows up after a shocking event. We simply continue in the same high level of distress and cannot find a way to bring that level down.

I wasn’t always a dyautonomiac. I have experienced the vagus calming impact. I know my nervous system is a sandwich or two short of a picnic these days, but I’d never consciously applied that knowledge fully to my two year long stint of living in permanent gut-twisting distress. I even described it as like being ripped apart from the inside out and as being physically painful and yet never fully made the link until reading Tracy’s post. It was non-stop 24-7 and I struggled to function and to make sense of things around me. I have always looked at those years as being ‘nervous system stoopid’ and though I acknowledged that it was a physically painful experience and that science backs up that trauma causes physical pain, I had not consciously tied the latter in with the vagus nerve specifically. Not surprising really as when in fight or flight, higher brain functions don’t get supported any more. Brain-computer says “no”! And as I experience a lot of fight or flight effects (it’s a continuous management issue) I don’t get much Brain Time these days.


A specialist confirmed that my fight or flight switch was stuck in the ‘on’ position and had been for a long time. Let’s just drift over the fact that scientists reckon that the fight or flight response is, yes, useful, but damaging if ‘on’ for more than two minutes straight. My several months of whackadoodle respiratory processes seemed like nothing after the two years of not knowing what was going on when my Mum disowned me. Those two years are what are foremost in my mind as I write here about the physical pain of trauma. No trauma I’ve ever experienced was like that and I was in a perpetual state of fight or flight that made it very hard to get through from one second to the next. Many months of being ‘on’, followed by years of being ‘on’, permanently having to monitor and manage my symptoms because my default is now for my fight or flight to be, yes, switched on. You see how far removed we dysautonomiacs are from the trauma ‘norm’?

Interestingly, the one thing I found that didn’t help exactly but kinda almost got me through each second at a time, was what I now realise was my own attempt at the numbing/blanket effect that my nervous system wasn’t giving me. I’ve written about this tool before but not from a visceral perspective. It didn’t come anywhere near being numbing in any shape or form but it helped me to survive through each moment. That thing was to play an immersive console game, when I’d never been a gamer before. I mean I’d played Sims occasionally, but not what I thought of as ‘proper’ gaming, heh. It was a couple of Bethesda open world games (Oblivion and Fallout 3 as it happens) that were non-restrictive – you can go anywhere, do anything. There is a central storyline, but you do it whenever you feel like it, leaving you to act on whatever is most effectively stuffing your brain with ‘other’ at the time.

Understandably my system is mega-faulty after that incredibly prolonged period of flooding my brain with chemicals shouting ‘Alert! Distress! Danger!’. It was going downhill at the time; hence the misunderstandings and miscommunications, but that one event pushed everything skyhigh. I now have to take neuro’ meds to help stabilise my autonomic nervous system. They don’t magic the malfunctions away, but they do help to reduce the extent of their impact significantly. I still have to be very careful about how I manage my brain and body when I feel the responses going doolally (which can be multiple times a day).

The key for practitioners (and self-advocating patients) out there is to understand that this difference in neural response post trauma is significant and treatment needs to be appropriate to each patient’s wiring. The wiring in dysautonomiacs is wonky so the treatment has to be on a proportional incline!


This is why rare disease (and rarely known disease) patients use the zebra pattern when awareness raising


If you’re a fellow patient experiencing fight or flight issues then definitely talk with your doctor about it. If they don’t realise that the nervous system is affected as part of your condition then have a look through my FAQ of links and research in case there’s something there you can print off to help them understand. Please note: doctors are trained to learn from science so general media articles won’t be of use to them, so go for the research papers when you can, medical practitioners are totally used to working with those.

My fellow blogger, Isy Aweigh (over at ‘Living anyway: Life, CRPS and Everything‘), kindly checked this post for me before publication coz, as it turns out, writing about the fight or flight response, yes, you’ve guessed it… sets off my fight or flight response. My thanks to Isy for making sure this post made sense (and for adding a truckload of commas to slow me dowwwwwn)!

Showing the post to a fellow patient before publication meant that we found we both have similar experiences with trying to calm our nervous system down. We both find the type of mindfulness that focuses on the ‘physical within’ pretty useless. Our innards don’t play well with others and it seems that includes our conscious attempts to calm them so we have to take a more indirect approach. Our approaches are specific to us as individuals but there is a lot of overlap because we utilise what happens to calm us, rather than focusing on calming. For me I pretty much go through them in this order:

  • I can use breathing techniques but it has to be with a QiGong (Chi Gong) focus for me. I can’t focus on the breathing itself, it has to be on pushing my stomach out to draw my diaphragm down. I imagine I’m drawing energy in with the breath and down to my stomach, it gets drawn down through my body to the front of my stomach then down and round to come back up towards the back of my body and leave through my mouth again. Keeping whatever energy my body needs and giving the rest back to the universe. Pretty calming no? Well, it helps me a darn sight more than focusing on my breathing does because I need to be calmed by what I’m doing, not to try and focus on calming what doesn’t like to be calmed. Focusing on what’s wrong and trying to correct it doesn’t work for me, I have to come at it sideways.
  • I think of Magic Dude which both lifts and calms me with love. I realise that I’m currently pretty lucky to have someone like him in my life, but if he wasn’t I would do the same thing with my most precious of besties.
  • I think of my eventual art area, in our currently partly renovated home, and it makes me smile. It is going to enable a return to a great joy of mine.
  • Doing some Tai Chi would be my best option for sure. It wins by faaaaaar! When Tai Chi-ing my mind is occupied with that alone. It is a moving meditation and supremely calming for me. My pain condition means that for most of each day that simply isn’t an option for me, so…
  • I run through Tai Chi moves in my head. Research has shown that clearly imagining movements in our heads actually strengthens the neuronal pathways that we would use if we were actually doing the moves physically. So it’s not surprising that thinking through the moves is almost as calming as performing the moves with our entire body.

The reason they’re in this unexpected order is because fight or flight wobblers can occur anywhere. We need simple on-the-spot options that we can do without drawing attention to ourselves. It’s not helpful having to prioritise answering questions over health management, so subtle is handy but also much needed when activity is restricted. So Jedi mind tricks are key! 😉 But yes, I will break into Tai Chi anywhere if I need to or if I simply feel like practising! I’ve been known to Tai Chi in supermarkets, D.I.Y. stores, car-parks, you name it! And people tend to not interrupt when you’re being that weird! Hehe

But that’s just my own array of tools. I wonder how much we all overlap with the approaches we’ve developed which work for each of us?


Coping with ‘still’ being disowned

Family has to have a broader meaning or I wouldn’t survive. I put on a good front but what silently rips me apart everyday does so even more relentlessly at this time of year. So many of my fellow patients have also been disowned by members of their family, courtesy of neuro’ symptoms and the resulting accumulated misunderstandings. It’s a horrific ‘norm’ but I never thought my family would be that kind of normal. We were so close for so long. Two family members outright believe I’m some kind of opposite of me, one has never said what they think but hasn’t acknowledged any messages or even my basic existence since the others disowned me. One definitely knows I’m still me and I am blessed to have them in my life.

Family is those we care most about and who cares most about us. Some of those I care most about think bizarrely incorrect things of me which is a daily torture I struggle with. But the rest of the people in my life know who I am and their (your) mutually reciprocated love and care is what helps me to keep going. Thank you. For just being you. I love you being you.

Like many other patients I keep thinking that one day this nightmare will end. That those three members of my family will wake up one day and remember that I’m me but after, what is it now? Five or six years? I try really hard not to remember how long it’s been. After this long I have to find a way to let go of the need for that to happen whilst still keeping hope more generally. I have to find a way to stop the ‘why? wtf? how-is-this-even-possible? argh! I-can’t-cope-with-how-wrongly-they’ve-got-me’ going round and roouund my head each day.

Pain of confusing loss, broken heart

I live by distraction. It’s a chronic illness tool for survival which I try to apply to this kind of pain as well. Distraction is the only way I keep going in this regard but at this time of year when Magic Dude is at work and I can’t phone my Mum to wish her a happy Christmas because she’d hang up on me over stuff I don’t even understand, well, it’s a whole new level of hurt and confusion.

There’s aspects we hang on to in the hope that an answer will magically appear. In my case I’ll likely never find out what the confusing conversations were taken to mean. They were during my neuro’ downslide which was reducing my processing so swiftly that none of us stood a chance of finding out about that before it affected communications and interpretations. And why hang onto that? Even with the med’s that I have now I can’t read the explanatory email because my fight or flight still responds by trying to make me pass out. I actually tried to reply to that email in the beginning. We often try to deal with things as we would have pre-illness because we don’t realise at the time how cognitively compromised we can be. I made that mistake. I would read one paragraph then battle not to pass out and then, once I was vaguely upright again, I’d attempt a reply to that one paragraph without realising how severely my processing was being affected. It took me three months to write a reply because it took so many days to recuperate after reading each paragraph. You’d think I’d have cottoned on but I just thought it was the extreme distress causing it. I’d never been disowned before, but I’d never been so cognitively compromised before either.

To this day I have no idea what was in the email I received or the one I sent and as I can’t read either without getting severely symptomatic I have to accept that I am unlikely to ever know. And I think this is the issue for so many in this situation – we never get to resolve it, we never get to correct each other’s misunderstandings. It remains an open case. There’s no real understanding of how this came to be, it just happened one day out of the blue and that’s why we struggle to find a way forward. Because it’s not just the loss, it’s the fact that the loss seems so random and inexplicable. Being unaware of any comprehensible reasons for such an extreme life decision makes it a lot harder to accept and cope with. And that shock never seems to go away. Every day it slaps us in the face again. Having a faulty nervous system sucks.

One thing I do manage though is to hang onto what was. Before the inexplicable. Maybe that makes it harder in some ways but it definitely makes it easier to not implode entirely. I remember when Mum knew who I was. All those years, all that love, all those shared experiences – they are not erased and they’re not changed to fit with my new reality. They are a part of me and of my journey to who I am today. Admittedly who I am today was also massively impacted by being disowned but I do not have to let go of those good memories to deal with the confusing past few years. The good and the bad times are not mutually exclusive, they can co-exist Shroedinger style. Which can also be upsetting as the contrast is so extreme. But it forces me to look at the now. What I want from life in it’s current reality. And prodding me to keep focused on the present is no bad thing at all. That’s where life gets lived after all. I want to fill it with smiles and goodness.

So in each moment – what would help with the smiles thing? If I find I’m a bit stuck… planning housey stuff and sketching ideas (refocuses my mind to positive developing stuff), arty stuff (currently embroidering my first ever home-made curtains, they’re gonna be the prettiest bodge-job ever 😉 ), playing Lord of the Rings Online (it’s currently the Yuletide festival on there!), Facebook (connections with friends), online ‘window’ shopping (pretty stuff!), sometimes I can handle some music (maybe something enthusiastic like Florence and the Machine’s ‘Dog Days are Over’ or perhaps something beautifully chilled like Stevie Ray-Vaughan’s version of ‘Little Wing’ or delightfully nervous-system-calming like Ry Cooder’s ‘Dark is the Night’). What would your go-to list be? And would it be helpful to have that list up somewhere so that you can see it when your nervous system is raging or the thoughts are circling endlessly round and your cognition needs a helping hint?

This post was prompted by the first acknowledgement of my existence in aaaall this time by that one family member: today they removed me from an old message group. So I guess I finally have my answer on whether a) they wanted to have contact but felt caught in the middle, or b) it has been their choice to avoid me all these years. Maybe that’s helpful. I’m not sure yet. Maybe that’s one less question to drill into my soul each and every day.

I wanted to share my experience with my fellow patients so that you know that you are not alone. If you’re struggling with this kind of loss I want you to know that I ‘get it’ and I’m sending love and hugs. I am open about my loss, my distress, my confusion, my ongoing attempts to cope all these years later because this kind of stuff happens and I want you to be able to talk about it if you need to. It’s okay to talk about it. A common misnomer is that loss and grief get ‘better/easier with time’ whereas it’s really that we get better at coping with it. Of course it can be difficult to get better at coping when you’ve got a faulty nervous system that freaks out the moment that big-stuff-subject pops into your head. Hence that handy list of calming in-the-now stuff.

Getting my feelings down in writing also kind of helps. When this stuff begins to devour me I need to get it out somehow. The process naturally makes me re-assess my approach and behaviour which helps me think about what I need to work on next to better cope with the loss and confusion. There’s plenty of research on how writing can be helpful. If you need to talk and there’s no-one around at the time it’s another option to get those endlessly whirling thoughts out of your head. Maybe give it try. Poetry can be pretty cathartic so don’t be afraid of different types of writing. Write like no-one’s ever going to see it because no-one ever has to.

If this post makes you feel any better, any less alone, then hopefully you now know that it’s okay to feel how you feel. This is no easy or quick fix. We are complex beings even without the chronic neuro-illness complications. But it’s okay to feel and it might help to get some of those feelings out, whether that’s onto paper or with a trusted friend. You don’t have to bottle it up.

And if you know someone who is struggling with the impacts of chronic illness on their family attachments (or indeed struggling in any way). I want you to know that just by listening, by acknowledging, just by being you – you make a difference. There’s no need to encourage them to talk endlessly about things, (with conditions like mine that could actually rile up the nervous system even more), just being an ear and then being the much loved distraction that you are helps enormously.

Wishing you smiles and goodness,

Sending love to you all, xx

The Hungry Bear that Lurks in my Coat-Cupboard!

It’s quite dangerous putting my coat on these days! There is a hungry bear in my life. He tends to lurk in nearby cupboards, and he follows me around when I go out.

My body thinks there is a hungry bear out to get me. It acts as if I’m in a life or death situation quite a lot…. when I clean my teeth,… when I put my coat on…!?

Every time I go to do something, or if I get stressed or confused it floods my body with adrenaline, goes crazy for oxygen and shuts down my ‘unnecessary’ brain functions. I prefer to think of them as very necessary brain functions, but I don’t get to make the decision!

Hmmmm, I know – not particularly helpful as a day-to-day issue!

It’s even less helpful in situations that are stressful but really important. Even if I get a bit stressed or upset, my body goes into run-awaaaay-from-the-beeeaaar mode, and I effectively seem to go crashing through conversations missing all sorts of delicate data and replying only to the concepts, or bits of concepts, that I’ve grasped. Although, unsurprisingly, my responses are taken as if I’ve understood the whole and that I’m answering as such. So some really weird misunderstandings can ensue.

And I’ve only found this out from being told about it afterwards. And I still don’t get it unless someone patiently backtracks and explains what I’ve missed. And that would first require them understanding my stupidly weird health developments for them to be able to comprehend that I truly don’t understand what happened, which is unlikely… basically because they are stupidly-weird health developments and it’s taken me many months to get my head around them!

This is pretty much how I’ve looked for the past two years!

The hungry-bear-effect is the result of one more internal oddity courtesy of my faulty autonomic nervous system, (ANS).

I assume that hints and subtleties are useless with me these days, seeing as I have trouble piecing together what’s generally known as the ‘bleedin’ obvious’! Sometimes I’m on the ball, sometimes I’m thick as two planks. Sometimes I have to lie down before I pass out and/or throw up…..I’m full of variety!

I know, this is prime material for a cringe-some comedy, where honest misunderstandings lay waste to everything around the character being trailed by the metaphorical hungry bear, and without them ever finding out what on earth happened. It’s very confusing.

I’ve named the dastardly bear Bertram. He ended up with his name one day in a daft conversation that I had about how ridiculous this hungry-bear-effect is. I mean, really, cleaning my teeth? Woah, dangerous stuff, eh?

I do try to keep Bertram shut in with the coats as much as possible, but he does have a tendency to break out and follow me around.


Bertram got called up for stalking duty when I was prescribed an incorrect replacement asthma inhaler! My ANS said….

‘Oooh look, she’s still gasping for breath. I reckon she’s in trouble. I’d better make this gasping-for-air thing into the new default to help her out!’

So it basically got the wrong end of the stick… and then gleefully ran away with it. It’s really chuffed with itself, too! It thinks it’s sooo helpful. Like a happy but misinformed doggy-helper!

Seeing as my body thought Bertram actually existed, and that he was most probably going to try to eat me, it put me into ‘fight or flight’ mode, making sure of several things…

…That I had plenty of oxygen for my muscles to run or fight with, hence the over-breathing and occasional gasping.

…That my heart was pounding really fast to get the oxygen to the muscles.

…That my body was flooded with adrenaline to power the life-saving effort. (Even under severe long-term stress, in ‘normal’ bodies the adrenaline release is switched on and off coz the body gets damaged if it’s flooded with adrenaline for more than 2-3 minutes at a time). But, of course, my ANS is away with the fairies… so it switched it on to ‘permanent’ and then skipped cheerfully away to make sure that…

….only ‘necessary’ brain functions were running. Coz apparently all I needed to think about was where the teeth were and when to duck and roll. Which is tricky when someone’s trying to hold a serious conversation with you, and there’s no bear in sight.

“…apparently all I needed to think about was where the teeth were and when to duck and roll.”

When the adrenaline was permanent for many months, I would awake feeling reasonably okay, but even then my heart would already be pounding as if I’d been sprinting. And that was the calmest part of the day! I got used to conversations not making sense and I just assumed that there was some bit of information that hadn’t been mentioned that would’ve made sense of it all. I didn’t know it was all related and that I was actually missing stuff that would presumably have been quite accessible to my usual standard of brain. Not until nearly a year later when I got referred to a respiratory specialist.

Anything that I didn’t understand in the last couple of years is still an inscrutable conundrum. There’s no way I can backtrack and re-live conversations because I didn’t get all the information or concepts in the first place, so they’re just not there to re-live! So leaving me to my own devices to figure out what happened in a situation I didn’t understand, is an utterly pointless exercise. I’ll just go round and round the bits of info’ that I did grasp and never get any the wiser! Embarrassing, eh?!

When Bertram looms I feel like I’m not quite here. Concentrating is really hard. I can usually hear and understand each individual word said to me but I have trouble figuring out the overall meaning of the sentence. Now that I know what’s happening, I tend to back off from a serious conversation when I start getting Bertram symptoms. I also get a bit shaky, tremors in my hands. My face feels strange, kinda slack and taught at the same time. My heart pounds soooo fast. I get really nauseous. I feel all light-headed but the room doesn’t spin, it’s more like the world is spinning inside my head. It’s really hard to try and work around! But it’s become part of my daily life.

Trying to make a cuppa with a hungry bear on my trail!

Originally, of course, I had no idea what was going on or that the high heart-rate and missing information were related. The losing the plot, weird facial muscles and shakes are rather similar to when I have low blood-sugar so, before I saw the specialist nurse, I was taking dextrose tablets to try to calm the symptoms. I figured I must’ve been reeeaally low coz the tablets weren’t working! Doh!

So now I coast along, hoping nothing is too important coz I’ll most likely miss it, or screw it up, if it is. I have lowered my expectations of my brain and feel that I can cope a bit better emotionally with what feels like the loss of my grey matter. I still push my brain when I can. I wrote the ‘What is CRPS?’ page as and when I felt more ‘with it’. I can do thinking on my own time coz it’s when I’m up to it, in total slow mo’, and I stop whenever my brain falls over. I have to come back to my writing again and again to make sure it makes sense. I wouldn’t dare do otherwise any more!

Blasted Bertram!

As I am no good at making sense of new concepts or information at high speed anymore, (well, normal speed, but it seems like reeaally high speed to me), the key is to let people know about the problem, hope they don’t try to talk to me about serious stuff without bearing it in mind, (hah, bearing, that Bertram gets everywhere!), and the rest of the time just keep things simple.

The little things in life make me smile, they can warm my heart and they can make me chuckle. But now everything else has to be simple as well! Unless I can work through it laboriously on my own time.

I am determined to still have my brain, even if it is on a time scale more similar to that of Douglas Adam’s renowned ‘Deep Thought’ computer brain. Ask me if I want a cuppa and the answer will be instant, but surprise me with a point of view or concept I hadn’t expected and prepare to see me puzzled and, once Bertram takes hold, distressed. Or worse, I’ll answer you, but it might not make a whole lot of sense if I’m only answering to the bits I almost grasped, and so it can lead you down a wrong path without me even knowing it. Very unhelpful and confusing to both parties.

So it’s probably better to give me aaaall the information that you can in sloooow mo’, making sure that I haven’t missed something really fundamental that changes my perception of everything. And then come back in a millennia, or two, when I’ve got my head around it and can answer the question you asked, rather than the question that my brain thought you asked!

Seriously slow thinking required for apparently uncomplicated things!

Of course at the end of it I might still say “yes please, a cuppa would be lovely” and wonder why you look a bit bemused, but hey, my brain is more like a rollercoaster ride through fog these days. There are plenty of unexpected moments!