"You Don't Look Sick": Dysautonomia Awareness Month
Updated: Nov 10, 2022
"You don't look sick"
These words may sound all too familiar for someone suffering from an invisible illness. The truth is outward appearance often has little to do with internal health. While someone may look “fine,” an individual who appears relatively healthy may be living with debilitating symptoms such as chronic fatigue, pain, and more. While thousands of conditions fall under the invisible illness umbrella, this October, I'll be discussing one invisible illness in particular: dysautonomia. While it may sound rare, according to Dysautonomia International, roughly 70 million people worldwide live with Dysautonomia. As the Founder and Medical Director of Case Integrative Health, I have diagnosed and treated many patients with dysautonomia. However, some may not know that I also have a personal connection to Dysautonomia, as I once battled it too! I know firsthand just how utterly debilitating and life-altering the condition can be. But I also know that there is life beyond dysautonomia- I'm living it right now! With the help of an integrative MD, you can get better- I am living proof.
Dysautonomia is a complex word that describes an even more complex condition. You might be asking yourself, what exactly is it? While Dysautonomia may be one word, it describes multiple complex conditions. It's an umbrella term that refers to a group of medical conditions caused by problems within the autonomic nervous system or ANS. The ANS is composed of three distinct divisions: the sympathetic branch, the parasympathetic branch, and the enteric nervous system. They function together and are responsible for the "unconscious" part of our nervous system, controlling the functions that we don't have to think about, such as heart rate, blood pressure, digestion, and temperature regulation. Those living with dysautonomia may struggle to regulate those systems. And, because there are at least 15 different types of dysautonomia, different patients may struggle with different symptoms. Fatigue, lightheadedness, brain fog, heart palpitations, GI issues, and more can all occur.
While there are many different types of dysautonomia, there is one type that I see more often than others. That is Postural Orthostatic Tachycardia Syndrome or POTS- and it's the kind of dysautonomia I once struggled with. Those suffering from POTS have difficulty regulating the part of their ANS that controls heart rate and blood flow. This leads to symptoms like lightheadedness, fainting, fatigue, and heart palpitations. Neurological symptoms may occur, such as brain fog and headaches. Additionally, because there is a well-established link between the nervous system and the gastrointestinal tract, patients may even report GI issues, such as nausea, constipation, and diarrhea. While these symptoms may vary from day to day, many patients with POTS report difficulty completing daily tasks.
When a patient visits their doctor complaining of symptoms that match up with dysautonomia, their doctor may set up a "tilt table study." I remember being laid on a flat table that was then elevated quickly to stimulate the postural changes that bring on symptoms while they monitored my heart rate, blood pressure, etc. Sure enough, my heart rate increased, my blood pressure dropped, and I felt like passing out - but I threw up instead (not my favorite test). From here, there are two directions the doctor can take. My doctor put me on various medications and told me to increase the salt in my diet. While these treatments enabled me to get through medical school and residency, they never addressed the underlying cause. However, an Integrative MD will take a different approach. We will work to identify the root of the issue and then develop a comprehensive plan from there. Many cases of dysautonomia are due to vector-borne diseases like Lyme, Bartonella, or Babesia. So, we treat the infection first. For me, it wasn't until I addressed those underlying causes, that I was able to recover fully.
Even for those whose dysautonomia is not caused by an underlying infection, there are multiple supportive treatments that can improve a patient's quality of life. An integrative and functional treatment team will build a plan that addresses your unique symptoms. This can include medication but can also encompass rehabilitative exercises, neurological support, and lifestyle modifications. For instance, an Integrative MD can prescribe you medication and help you uncover the root cause, while a health coach will help you implement dietary and other lifestyle changes. With dysautonomia, as with many conditions, diagnosis, treatment, and subsequent recovery takes a village. It's important to remember that recovery is more than possible- I know from my own experience. At Case Integrative Health, we're here to encourage you, hold you accountable, and celebrate your victories. This month, and every month, we're proud to support dysautonomia patients
and anyone living with an invisible illness.