Living with Dysautonomia and EDS – Chapter 9 “Adrenergics Anonymous”

What it feels like living with dysautonomia and EDS – like I’ve joined “Adrenergics Anonymous”!

Adrenaline, my adrenergic tendencies and I have become very acquainted.  It’s my side kick in life.

It’s a bit like your favourite tipple at the pub when someone asks ‘what’s your poison?’.  You lap it up at the time but suffer from the effects of it big time when you’ve done it to excess.  And having had to live with the excess side of things since 2014, when my body just went completely haywire, I’ve become quite knowledgeable about its impact.

Adrenaline is my side kick in life. Click To Tweet

For example, there’s ‘Grog the Head’ as I have called him.  My headaches cum migraines.  Ooh somehow another alcoholic reference appears – you can probably tell where I am going with this?  Perhaps I do miss alcohol somehow?  I no longer drink. Well technically that isn’t quite correct.  There have been occasions where I have tried the odd reminder alcoholic beverage, and, well, ‘buck up Mrs’ because the after effects are a force to be reckoned with!

So, anyway, back to Grog.  He has become a pretty consistent member of my crew following my hot water immersion incident in 2014 (aka hot springs encounter).  When I last wrote, I was struggling to understand him.  He wasn’t with me for a while then all of a sudden he appeared.  Me, in typical analytical fashion, kept trying to work out why that was.  Purely from a ‘why do I have headaches now’ vs early on in the piece when I didn’t.  Though I might add, early on in the piece I did have a bit to deal with.  My body shook continuously for about 6-8 months and I had panic attacks galore.  It wasn’t like I was on holiday or anything.  Anyway, I digress (a little).

So the last time I wrote about Grog (the head) I had trialled reintroducing a night time dose of beta blocker.  The first six months of dealing with this shit I recollected I was on a pretty high dose of beta blocker and I had thought maybe there was a link? Well, with the introduction of that small dose of beta blocker, Grog almost disappeared!  Leading me to the conclusion that adrenaline was the trigger. God I am such a genius!  I say ‘almost’ because, as I’ve been doing a bit too much recently, he’s reappeared.  In fact, a few things have worsened. The insomnia, the prolific dreams, the excitatory, shaky shit (where I feel like a stress head cum bungie jumper) and fatigue crashes too.

Right, analytical head back on – what is my body doing and why is it doing it?

To address some of these reappearing symptoms, new Spesh had agreed that perhaps a higher dose of my beta blockers might help.   Though, we did try Endep first but OMG I could not tolerate that!  Princess here couldn’t even get out of bed on a quarter dose and it really darkened my mood so that one got shoved on the ‘doesn’t work’ pile pdq.

So I have now gone back up to a similar dose of beta blocker that I had for the first 6 months of my illness (40mgs 3 x per day) and the discovery is this – after two weeks it has just dawned on me that my headaches are almost non existent and my shaky shit has decreased too.  I think perhaps it has calmed down the ferosity of my dreams too since I haven’t seen Freddie Kruger for a while and sleep is a little better.

I still wake a little groggy after a dream filled sleep but somehow it is seeming to lift as I start my day (from the beta blocker effect). My excitatory issues have also reduced though not eliminated.  But fatigue is still an issue – you can’t have everything can you?

OMG – this is exciting.  I feel like a mad scientist on the verge of a major discovery!

So the conclusion I am coming to is adrenaline – whether its over production or simply a sensitivity to it  (or whatever the shit storm is that is going on inside here) – has A LOT to answer for.

Adrenaline is basically kicking my arse 24/7.

And it’s a pain in my arse all right.  Because there has been another discovery.  What I am also realising is that the more I do, the worse my adrenaline issues get.

The answer is I need to manage my efforts within reasonable limits and NOT rely on medication to solve the problem.  Medication is solving the effects of adrenaline but it’s still cooking up a brew in the background.  It’s starting to feel like all I am perhaps doing is raising the stakes.  Or should that be bar?  Raising the dose to be able to do more doesn’t feel like the right thing to do (in fact it feels like a very wrong thing to do).

Balancing my life feels like the right thing to do with medication as a helpful prop but not a crutch.

So as I reach the endeth of this post (or lesson), I am reflecting on how many alcohol-type references I have chucked in, in terms of how I have described my adrenaline ‘friend’:

Poison, grog, brew, bar, tipple, pub.  The list goes on.

Maybe I really am missing alcohol more than I realized?  Truth is, it probably most accurately explains the addictive, fun and nasty qualities of adrenaline very well.

Having an adrenaline problem is like being pissed and hungover all at the same time, day in day out.  It is my alcohol equivalent except I don’t often know when I’m actually drinking it!  For me,  it truly is autonomic.

Perhaps I should set up an adrenaline support group – call it Adrenergics Anonymous?  How to kick the habit!?

Membership, currently one.