Imagine going about your day as usual, and then the next moment you’re clenching your chest from pain, gasping for breaths, falling to the ground as your legs give out, the world spinning around, and you have no idea why your body just lost complete control. That was me 15 years ago — 100% healthy to bedridden. Suddenly, my life had turned upside down.
After years of suffering from many unexplained symptoms with no doctor finding a reason, I came to terms that this was my new normal and learned to live with them. My third severe relapse was in July 2018 and with extensive testing, I was diagnosed with dysautonomia. It came as a shock. Was there a name to what I’ve been experiencing all this time? As it started to sink in, my next thought was ‘what is dysautonomia?’
[To read my full story, click here]
WHAT IS DYSAUTONOMIA?
Dysautonomia is a general term describing a malfunction of the Autonomic Nervous System (ANS). The ANS is responsible for many functions that you don’t have to think about — regulating breathing, heart rate, blood pressure, digestion, certain bodily functions, temperature control, swallowing, sleeping patterns, and many more. The ANS can be divided into 3 main components: the brain (hypothalamus, medulla oblogata), the sympathetic and parasympathetic nervous system. You can think of the sympathetic branch controlling the ‘fight and flight’ response; the parasympathetic, ‘rest and digest.’ The image illustrates several important features of the ANS.
Usually dysautonomia is a failure of the sympathetic or parasympathetic nervous system, but there are instances where there is an over-activation. With such great involvement of the ANS in many functions, people living with dysautonomia can have a wide array of symptoms including fatigue, lightheadedness, unstable blood pressure, abnormal heart rates, feeling faint, excessive sweating, impotence, and brain fog. The spectrum of severity varies as well — from acute to chronic, and reversible/remission to progressive.
WHAT CAUSES DYSAUTONOMIA
There are many health conditions and underlying reasons that can cause dysautonomia. It can be a primary condition when only the ANS is affected usually characterized by degeneration of the ANS, which is not as common. More common forms of dysautonomia are secondary to other conditions such as diabetes, autoimmune diseases, Chairi malformation, Inflammatory Bowel Disease, connective tissue disorder, mast cell disorders, physical trauma, surgery, and illness. There are more causes, but unfortunately, many people never find out their underlying cause. I am one of those who still don’t know the root cause.
HOW IS IT DIAGNOSED
Over 70 million people worldwide live with a form of dysautonomia. Thus, dysautonomia is not rare — it’s just often misdiagnosed. There are at least 15 types of dysautonomia. The common forms include: Postural Orthostatic Tachycardia Syndrome (POTS) , Orthostatic Intolerance (OI), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA). It can be challenging to get a proper diagnosis due to a few factors: symptoms overlap with many other conditions, most often objective physical and laboratory findings may not correlate with symptoms, and a lack of awareness of dysautonomia in the medical profession and the public. This contributes to people being delayed, even as much as years, in getting a diagnosis.
In order to start the diagnosis process, each individual’s complaints must be looked at as a whole rather than separately. Three steps must be accomplished:
A complete history must be obtained to establish the possibility of dysautonomia
Ruling-in or ruling-out other conditions and factors (i.e. drug side effects)
Discern amongst the different forms of dysautonomia as each has specific tests
Currently, there is no cure and no single treatment that addresses all forms of dysautonomia. If the cause(s) of the dysautonomia are known, focusing treatment on that may improve symptoms. However, in most cases, treatment is lifestyle changes and medications focused at either opposing a condition or alleviating a symptom. The aim for treatment is to reduce symptoms enough that the person can function as normal as possible. For example, those with low blood pressure are told to eat more salt, wear compression socks, and stay hydrated to raise blood pressure to alleviate symptoms like dizziness and fainting. And if that’s not enough, then medications such as midodrine are added. It is believed that if a point is reached that the person can function, then with time with physical conditioning one will strengthen enough to balance out the ANS.
I believe the most important treatment is finding ways to cope with the life changes of having dysautonomia. I’ve talked to many who have dysautonomia and it seems most don’t ever get to “what they used to be.” You have to allow yourself to be okay with that. It will take a lot of hard work, time, and patience to appreciate and learn how to care for your new body.
When I first had my symptoms, I fully depended on the doctors to figure out what was wrong with me. Granted it was 15 years ago, and dysautonomia was even less known then. But I felt helpless when I didn’t meet the criteria for any known conditions. And instead of being acknowledged for my symptoms, I was blamed for causing them and labeled with anxiety. I knew deep down that wasn’t it because I was never an anxious person. And if that were the case, then my symptoms should have disappeared while I’m at home relaxing and doing nothing. But no — I was still miserable and felt like I was dying. I realized that the only person who can take charge of my well-being is me.
If you suspect you may have dysautonomia, as it’s still not well known by medical professionals, you most likely will have to bring it up to the doctor. Be prepared with your history and list of symptoms written down. Do your own research and find the specialists, know the tests you want, and be ready to provide the reasons why. If you haven’t had any common tests or labs done, then those will be done first to rule out other conditions before most doctors will order ones specific to dysautonomia. Do not be afraid to speak up for what you want. But it cannot be done in a confrontational manner. You have to find a team of health professionals that is willing to listen.
The symptoms of dysautonomia are not unique and do make deciphering what’s going on challenging. It is truly scary not knowing what’s happening and feeling you’re not in control of your body. Be patient and push through. There is an individualized plan that will work for you. It just takes time to find the right people and treatments. You are not alone in this battle, and you are a lot stronger than you realize.
I’m always here for you!