Dysautonomia is a rather long and sort of unhelpful umbrella term for a group of conditions that involve dysfunction of the autonomic nervous system. See, the name kinda makes sense when you look at it that way, but it would be great if it were something easier to say (or spell) so it could be easier to remember.
The Autonomic nervous system is responsible for controlling all the things we don’t have to think about, like Heart Rate, Blood Pressure, temperature regulation, digestion, pupil dilation etc. All the stuff that is important for keeping the body in what biology types like to call ‘homeostasis’ (or the optimal state of being for the human body). This natural ability means the body is able to maintain that optimal state by responding appropriately to things that could affect body function, such as changes in temperature, gravity, emotions, stress, pain and infection etc.
Think about it like this, the human body and all its organs and systems are like an orchestra and the autonomic nervous system is the conductor; when each section is finely tuned and reading the same part, it works perfectly, and it sounds fantastic (ok talking more about the theoretical orchestra here unless you happen to have a lovely singing voice or fascinating bowel sounds ..) and everything just gels, the resulting piece is beautiful. However, if one section of the orchestra is out of tune or playing the wrong part, suddenly, everything is off in the overall piece.
This is what happens with Dysautonomia; it’s like the conductor is standing there madly waving their baton, but for some reason, nobody can see them over their music stands, and the signal can’t get through – the heart rate regulating section is playing Flight Of The Bumblebee at a million miles per hour, the blood pressure section is relaxedly playing Moon River and may actually fall asleep in the process, the brain is getting a bit nervous and playing the Imperial March but mostly getting it wrong as oxygen isn’t being supplied sufficiently for optimal brain function – and that’s just covering the most common issues people notice with Dysautonomia. Sometimes the only way the conductor can get everyone to pay attention is to reset it all completely in the form of a faint and hope that being horizontal will get everyone on the same page and working again.
Nobody has been able to discover the reason why the autonomic nervous system has trouble doing its job, why Dysautonomia occurs in some people but not others, why it affects 75% more women than men, why POTS is the most common type of Dysautonomia, why most people develop it between the ages of 15-25, or precisely what happens in the body when it does. There are several theories, but none explains everyone. We are all different with different health histories, and we range from those who are able to work to those who are completely bed-bound. None of the researching and treating doctors have been able to say definitively why and how this happens – just that it does.
It is not possible to know how many people in Australia suffer from Dysautonomia, but it is far from being a rare condition. A recent publication by the heart rhythm society estimates that POTS, the most common type of Dysautonomia, occurs in about 0.2% of the population. If we apply this statistic to an entire population, say Australia, with a population of 23.12 million, that would mean there would be 46,260 people living with POTS in Australia – and that’s just POTS. That does not include other types of Dysautonomia, such as Orthostatic Intolerance, Recurrent Vasovagal Syncope, Orthostatic Hypotension, Inappropriate Sinus Tachycardia, Multiple System Atrophy and generalised Dysautonomia. It may not be as common as other conditions, but 46,260 people are quite a large number.
Causes of Dysautonomia
At present, the cause of my Dysautonomia is not known. Dysautonomia is a dysregulation of the autonomic nervous system, so it can happen as a part of a number of primary diagnoses. In fact, having panDysautonomia, as I do, without a primary cause, is very rare.
We now know that the cause of my Pandysautonomia is auto-immune!
For example, people in later stage Multiple Sclerosis and Parkinson’s Disease can experience autonomic dysregulation. But there are other Primary Diagnoses that are known to cause Dysautonomia. Here is a list of them (see the yellow graphic below). It’s my list, so I have crossed out the ones that tests have shown not to be my own cause. It is not exhaustive; I haven’t included things that I know for certain don’t relate to my case. The uncrossed items are the causes yet to be fully explored by my doctors that I think are worth exploring. In some cases, they haven’t been crossed off because my pacemaker precludes me from having an MRI. These items are listed in blue. It is a long process trying to convince doctors that I need to know if my cause is treatable. If it isn’t, I will have to come to an acceptance. But I cannot do that until I know I have done my best for myself and for my family.
Symptoms from top to toe (pre-Immune Suppression and Remission). I keep this list here for others looking into their own condition.
Cognitive Fog: memory issues, variable ability to concentrate, dizziness. These challenge my very identity. I was smart and now thinking is much harder for me. Sometimes I sound like I’ve lost my marbles, my words get jumbled, and my memory is scrambled. It’s distressing. If I sound weird when I talk to you, it’s not that I am stupid. I am just struggling.
I have trouble with vision sometimes. My eyes go into a focal spasm. My pupils are not always equal in size, and sometimes they don’t adjust to the light properly. My eyes are often dry. Other times they stream, and people think I am crying. But it’s just my Dysautonomia (as moved as I am by whatever it was you just said)!
The inside of my mouth feels like after you’ve taken a big mouthful of hot soup. That burnt tongue feeling? It is sometimes tender and dry, and my gums are red and sore.
Heart issues are part of my scenery, managed mostly by my wonderful pacemaker. I don’t take cardiac medicines anymore. My heart rate ranges from the early thirties to the mid two hundred. If my heart rate drops rapidly, my pacemaker kicks in. I have had thousands of rate drop episodes since my pacemaker was inserted. I am grateful for it every day. My blood pressure can be very low, or very high, or somewhere in between.
My stomach, digestive tract and bowel can miss important nerve messages that make them work. This can result in a ‘pseudo obstruction’. First, I get ‘postprandial bloating’; my tummy distends like a ten-month pregnancy. Then, all tummy services are suspended (so much for never having to be pregnant again)! These days I wear forgiving clothes, and I frequently get asked if I am expecting. When it is extremely bad, I make the trudge back into the hospital. It’s hideous, but my new normal is a bowel that doesn’t work without extreme inducement. I take ten various doses of laxatives a day and also self-administer enemas. I hate this symptom most of all.
I am nauseous on and off all day and especially at night. This is a side-effect of the medications which produce peristalsis (intestinal squeezing).
My bladder either retains urine and has to self-catheterise, or I am incontinent. I have detrusor dysfunction, so emptying my bladder fully is tricky. Sometimes for brief and lovely periods, the pendulum passes through the middle of the arc, and my bladder behaves like it used to.
My body doesn’t regulate temperature properly. Some parts of my body can’t sweat anymore, so other parts of my body overcompensate. I struggle greatly with heat. I don’t know how to dress for the conditions because my experience of them is not accurate. In the past, I often over-dressed or under-dressed my children. Now they are old enough to let me know if they need thermals and a jacket. For me, it is always layered, so I can try to manually adjust things from the outside in.
I get fasciculations in my muscles in random places all over my body. Sometimes these go on for a long time; other times, it is just for minutes. Sometimes, they are not there at all.
My leg muscles are not strong when I move to stand, but it does improve when I have been walk around a bit. I struggle going up and down stairs or uphill. My left leg often burns. I’ve been told this is nerve pain. Sometimes I have a strange gait, and it is tricky at these times to lift my feet properly.
I have pins and needles and burning sensations in my feet and hands, known as peripheral neuropathy. We found an excellent medication for this, but now I only take it when it is extreme because the medication makes my brain fuzzier.
I live with fatigue. It stands to reason that my body is tired.
How can I help?
Research is being conducted into Dysautonomia in Australia and the US. You can help by donating to support the research or even being part of research that is being conducted – trials need healthy participants for controls and participants that have different types of Dysautonomia and fit the criteria for their trials. I participated in a clinical trial a few years ago, and the results of that trial are almost ready to be presented – how exciting is that!
I don’t know about you, but I like infographics and diagrams and things that help explain different aspects of Dysautonomia specifically and Chronic Illness in general – particularly when you’ve got a bit of brain fog and are struggling with yourself! Here are a few of the good ones, with source links, so you can look them up yourself.
First up, the ever-popular Spoon Theory! If you’re living with Chronic Illness or are close to a person who is, chances are you’ve heard of the Spoon Theory. Written by Christine Miserandino and posted on the popular Chronic Illness blog – But You Don’t Look Sick, the post took on a life of its own when thousands of people read it and instantly connected with this simple way of explaining energy conservation with chronic illness – check it out! It’s well worth the read if you’re not familiar with it.
Awareness foundations with great information and links:
Dysautonomia International – US-based, global organisation covering all types of Dysautonomia. They have a lot of information on there, but although they are an international organisation, a lot of their specific resources are more US-relevant.
POTS UK – UK-based POTS website – lots of great POTS resources and a very active Twitter account
DINET – US-based DINET is a great source of information and support – it even has its very own forum! One of the original Dysautonomia pages, DINET, pretty well has it all covered.
DYNAinc – Dysautonomia Youth Network of America incorporated. US-based site for kids with Dysautonomia that is open to kids all over the world. Greg Page, the original yellow wiggle, is a spokesperson for the group.