Uniqueness of our symptoms

Everyone with dysautonomia has their own unique collection of screw-ups in their body. We are all genetically unique, and in addition the effects of our own environment and experiences act upon us as well, ensuring a truly individual version of dys’ for each of us!

There are, however, recognisable overlaps or common denominators even when we have our own versions of them. Here’s my own personal list of oddness….

  • Near fainting, severe lightheadedness, like the world is spinning inside my head, can last days at a time. Hence being vertical really is a challenge these days, the horizontal is my friend!
  • Affected cognition, reduced awareness, severely reduced processing regarding understanding what people are saying, accessing words and just thinking generally. I’ve learnt the hard way that even if it’s simple I probably won’t get it!
  • Increased heart rate, tachycardia – like I’ve just been sprinting, but I’ve actually just put my shoes and coat on, or the conversation took a turn I didn’t quite follow. The slightest stress, mentally or physically, sets this off.
  • Tremors, in my hands. Which is embarrassing in Tai Chi class!
  • Tingling sensation, in my face, hands and arms; and my facial muscles feel like they’re both taut and saggy at the same time.
  • Breathlessness, because my body wrongly thinks it needs more oxygen.
  • Tight and uncomfortable in the centre of my chest, sometimes a needling pain sensation, too.
  • Reeeaaally severe nausea, can last weeks at a time.
  • Visual oddities, problems processing, sometimes the world is nearly in focus but only in a central circular area, more often I just can’t process it all so I get a general idea and my brain fills in all the gaps with whatever it feels like!
  • Feeling detached from my surroundings, y’know, spaced out, shot away, seriously not on the planet, maaan.
  • Light sensitivity, can’t process too much so flashing or moving lights, even reflected light, makes the near fainting worse, which made decorating the Xmas tree really tricky this year! I’m okay when I’m okay, and really not when I’m not!
  • Noise sensitivity, again I can’t process too much so I need one simple conversation at a time, if there is TV or music as well my brain falls over. Again, some times are better than others.
  • Hyperthermia, extreeeemely high body temperature. Every cell in my body feels like it’s most of the way to self-combustion, and I come close to passing out if I don’t catch it early enough. Tricky to work around as it’s not the done thing to rip all your clothes off while collapsing in a panting, unaware heap!
  • Lack of temperature regulation generally, I can never get warm, no matter how many layers or blankets I have. Only if I have an external heat source such as a hot water bottle or radiator etc. This was always the case up to a point, but has got really extreme since the Dys’ kicked in with a vengeance.
  • Arrhythmia, random events. I have had it for years since developing CRPS, still being investigated.
  • Tendency to go low blood sugar, a whole load of symptoms just go with this one! It needs to be picked up quick and sorted out or I’m just plain weird at everyone coz everything stops functioning properly. My best bet is to avoid any communication until I feel more ‘normal’ again.
  • Really clumsy, I’m the ultimate definitely-not-a-ninja. When the processing can’t handle stuff any more or I’m using up the only bits of available brain for thinking about something simple. Walking and thinking is no longer an easy task!

The main culprits for these are:

Hyperventilation syndrome, which has also meant that…

I’m in an almost permanent state of ‘fight or flight’, (it was all of the time, so this is actually an improvement!), this means that my body thinks it is in a terrifying life or death situation and it…

  • Shuts down ‘unnecessary’ brain activity (i.e. most of it)
  • Raises my heart rate
  • Injects loads of adrenaline into my system

So, effectively I haven’t got a clue what’s going on and the effects of the adrenaline on stress levels means that I find it really distressing. Especially if I’m trying to follow a conversation. This adrenaline thing has been going on for nearly two years (as I write this) and our bodies are only built to cope with this for 2-3 minutes at a time, otherwise it causes permanent damage. Our bodies are supposed to fluctuate the fight or flight thing on and off during long-term stress, of course my body didn’t get the memo on that, so it just switched it on and buggered off to do something else.

So my body now reacts to terrifying ‘life threatening’ situations, such as putting on my coat or cleaning my teeth, by overloading my body to such an extreme that I lose the plot and nearly pass out and/or throw up. Great protection mechanism, body!

The hyperthermia is it’s own separate thingy, as is the blood sugar, although all automatic processes are ultimately linked. The arrhythmia is still a mystery being investigated, obviously linked to the other near fainting/adrenaline stuff, but no-one knows how much. *sigh*

So, yeah, life is interesting. It’s easier when I can understand why things are happening, but I’m in a phase where the newer stuff isn’t quite all figured out, yet. Getting there, though, x

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