Living with Dysautonomia and EDS – Chapter 5 “Me Wiring is Off”

What living with dysautonomia and EDS feels like – “Me Wiring is Off”

When things went wrong 18 months ago, it felt like a malfunction, like the machine went wrong or like the accelerator got left in the on position.  Well yesterday I got validation this is indeed correct.  It’s called neurally mediated hypotension. Da dah!

I was referred by Spesh to a Cardiologist specializing in dysautonomia and syncope (or fainting) just to see what other treatment options there might be.  Whilst things have improved since my wham bam hot springs encounter, for the last 9 months things have somewhat plateaued.   My alarm system has remained poised to go off (albeit in shorter bursts) if I triggered it.

I’ve been wanting to know if this is it – if this is now the state of my nation?

So yesterday, based on my now extensive history of 18 months of shit, I heard a new term to describe what I’m experiencing: neurally mediated hypotension mixed with a hyperadrenergic response (potentially POTS/postural orthostatic tachycardia syndrome).  The neurally mediated bit was the new term.  It was explained as a systemic wiring issue between the heart and the brain that causes blood pressure to ‘lose its shit’ and drop to the floor (well ‘lose its shit’ are my words not those of the cardiologist – I don’t think that would be in his vocab).  This document gives a really good description of what neurally mediated hypotension is.

Is this now the state of my nation? Click To Tweet

The triggers for my blood pressure ‘losing its shit’ are heat (yo ‘Hot Springs/hot anything!’), stress (yo ‘work’), exercise (yo ‘cardio’), standing too long (yo ‘3 hr workshops’), talking/laughing (yo ‘socialising’), watching an action movie (yo ‘game of thrones’) – all the bloody stuff I’ve been wrangling with for the last couple of years and trying to understand why it would trigger my symptoms.  It’s actually a neurological fault that’s been pushed too far.  As soon as my blood pressure drops from being upright, my body races to compensate by producing adrenaline, which then breaks the circuit, my blood pressure drops again (this time from the adrenaline) and off we go again, and again, and again.  The adrenaline aspects give me the shakes, make me feel clammy, achy, get a racing chest etc etc.

This very very helpful man explained other effects of neurally mediated hypotension as being breathlessness, headaches and fatigue.  Bing bong dingalingaling!!!! This is all now making so much perfect sense!!

We discussed some medication adjustment options and the fact it is quite trial and error but also chronic in nature.  First time I’ve heard the word ‘chronic’ – it was a bit sobering.  I’ve tended to like to think I’ll fully get over this thing.  That word ‘chronic’ is making me stop and think.  Not least, continued triggering is probably something to be avoided as I think I’m beginning to understand.

I came out of the appointment literally buzzing on one of my adrenaline rushes (I wonder if he noticed?).

I think he’d got an idea of what I was like when I told him I experienced ‘bungee jump sensations’ sometimes from having fun conversations.  You know like this:

extremely-unusual-conditions-664132_1280I make the sensations sound quite good don’t I?  The reality is a little different.  I would say they are ‘over-the-top’ for the situation – with elements that are fun (feeling excited) but other elements that are not fun at all (racing chest, almost a bit seizure like).  I’d already painfully over-alerted whilst aqua planing on a wet freeway on the way in to the appointment but the elation of getting a deeper view of my diagnosis, from someone that clearly knows a lot, was just too much to manage.  I was bouncing and revved when I got out of there and I spent the rest of the ride home (mum was driving) with a tight chest, the jitters and jumping like a jiminy everytime she hit the brake pedal!  I knew I should have brought the bloody valium with me (one was clearly not enough yesterday).

I felt like a coiled spring by the time I got home and my body just ached.  This of course was then followed by the obligatory 24 hour fatigue, fibro legs and headache as I started to settle down (which I’m resting with as I write this today).  Further reminding myself what a sensitive little manic bod I have become and making me pause for even more thought!

So that worthwhile visit has left me in a much better place knowledge wise, confident that my hunch about my body malfunctioning was indeed correct but obviously now also a little more pensive about what the future holds due to the chronic and somewhat uncontrollable nature of this thing.  Having Dr Googled the condition when I got home, I’ve also come to discover this bloody neural element can be genetic as well in the same way that hypermobility is.  So when my daughter says she’s feeling dizzy and tired maybe I should be taking that a bit more seriously!?  Hmm.

So how best to live a life with permanently wonky wiring and a cardiovascular junction box that’s up the swanny?  I’ll get back to you on that one…