Most people may never have heard of the illness called dysautonomia, even though around 70 million people world-wide have it; though it’s entirely possible that there are many more undiagnosed, believing that they’re just getting old and tired.
It’s mainly associated with diabetes, with Sjögren’s disease a close second, but it can be associated with many other autoimmune disorders, such as pernicious anaemia or Hashimoto’s thyroiditis, and it is then classified as secondary dysautonomia. But it can also appear as an autoimmune condition on its own, when it is then the “primary” version of the illness.
It’s a disorder (some call it a disease, though that’s not entirely accurate) of the autonomic nervous system (ANS). And here’s the thing. The ANS controls all the vital functions of the body, including the working of all vital organs and regulation of urination, blood pressure, energy levels, appetite, eyesight, bowel function, digestion, swallowing and more.
The ANS responses cannot easily be altered, even when they are predictable, like speeding up your heart when you exercise or gently lowering consciousness while you sleep. So there is no known way to get it working again as it is supposed to, and symptoms can appear at random and disappear again just an hour or so later, sometimes to be replaced by something else, like a coughing fit, for example.
To say it is an unpleasant illness is a gross understatement.
The symptoms for any one individual vary according to the underlying condition that is at the root of it; if there is one, because sometimes, it is familial, inherited, progressive and possibly even fatal. Otherwise it takes many and varied forms with a variety of symptoms, although few people have all of them.
When it’s accompanied by Sjögren’s, for example, the main symptom is dry mouth and eyes, where with other underlying conditions (and there are many that can trigger it) it might be a tendency to pass out when standing up from sitting, or constipation alternating with diarrhoea (with no way of knowing which at any one time!).
It might be night-time nausea, sudden overwhelming tiredness or unrelenting insomnia, feeling freezing cold when everybody else is saying how warm it is, palpitations or sudden surges in heart rate, and because mood changes are common, depression or anxiety can appear seemingly out of nowhere and for no apparent reason.
Most people don’t have the symptoms all the time and may even feel reasonably well for quite long periods. But as sure as night follows day, there will be a sudden “crash” when you wake up one morning and just about every symptom you can experience is waiting for you.
Diagnosis is via a battery of different tests to essentially rule out other illnesses, and includes, among others, blood tests, physiological examination, reflex tests and the tilt table which transfers you from a laying down to a standing up position to see if your heart and blood pressure can keep up. This last, though, is normally only used to explore the causes of unexplained dizziness or fainting.
The really bad news is that even when diagnosed, there is no cure, just symptom management. This is often more difficult than it sounds and not always very effective, since one of the ‘trademarks’ of this illness is its total unpredictability.
You can be wide awake one moment and then swamped with overwhelming tiredness right out of the blue. Maybe on your way to a dinner date when nausea suddenly strikes. Or you have an abrupt and profound need for the loo which must be responded to immediately or… well, you get the idea.
Perhaps one of the worst things about it all is that it is an invisible illness. You can feel like death, struggling to breathe normally, and wondering how long you can remain upright and then some well-meaning individual tells you how well you look! There is usually no pallor, no spots, or any other visible evidence to indicate there may be anything wrong.
There is one glimmer of hope though. Like so many systemic illnesses, Vitamin B12 often plays a part and heavy daily supplementation can make enough difference to some people that they can live a nearly normal life.
Until more research is carried out, that’s about all there is as far as treating the entire condition is concerned – and I can say from personal experience that it stops the worst of the crashes. And that’s all that can be done for now.
Terence Watts is the creator of Brain Working Recursive Therapy (BWRT).