Monday, 24 June 2013
Some doctors - the ones that believe in ME obviously! - think that at least 80% of sufferers experience orthostatic intolerance. It means the inability to tolerate being upright, in particular standing. Standing or being upright causes you to feel increasingly worse and in me creates that driving panicky feeling that I must lie down, I must get flat asap. Recognise it?
My understanding of what is happening is that for some reason the body's blood is pooling in the lower half of the body. Our hearts are constantly pumping against gravity to distribute blood as evenly as possible throughout the body, if that isn't happening efficiently gravity pulls the blood downwards into your feet. So the brain is lacking blood producing an array of nasty symptoms. As you can imagine not enough blood to the brain could be why you experience brain fog, but it could also mean that your brain tells your body to release adrenalin, in order to make the heart pump faster in an attempt to correct the imbalance, making your heart race for no apparent reason, and giving you that horrible feeling of pressure in the chest and wired feeling. It can also be responsible for the malaise you may feel.
At it's most extreme a person will not be able to tolerate being upright and will actually faint and many ME sufferers when given the tilt test will momentarily pass out. The tilt test is where a doctor straps you to a table and tilts it suddenly backwards. Orthostatic intolerance is a recognised condition hence the existence of the tilt test, however it is not commonly recognised by GP's etc as making up the landscape of ME.
For me finding out about orthostatic intolerance has been enlightening as it makes sense of so much of what I suffer from and gives me the knowledge that the drive to lie down that builds after I've been up and about for 1-2 hours is not my imagination but something tangibly wrong with the function of my body. When things are bad with me I will feel the need to lie down sooner, when I've had some really good days - one or two so far - I don't get that sensation at all. For me I identify it as starting with a feeling of pressure in my chest that I associate with a release of adrenalin. I call this feeling adreanliny, but the longer I am upright the more symptoms build like a Tsunami that only I can sense building and building with that feeling that drowning is inevitable if I don't get flat and quiet soon.
Hope this helps some of you.