A few years ago, when I was pregnant with my third child, I began having frightening heart palpitations that felt like they caused my entire body to shudder. I had four doctors I saw regularly then – a general practitioner, an obstetrician, a psychiatrist, and an endocrinologist…all for symptoms I was told had nothing to do with one another. I had suffered from hypoglycemia since I was a child, and now in the second trimester of my third pregnancy in four years I had full-blown gestational diabetes. I was also experiencing an exacerbation of the depression and anxiety I had struggled with since the age of 13 – and the general paranoia that my body was about to give up on me. It was the worst time in my life; every moment I feared might be my last. When the palpitations started, I couldn’t convince myself it was all in my mind anymore.
So I visited a cardiologist. After numerous tests, ECGs, even an ultrasound on my heart, I was told it was just nervousness combined with the stress the baby was putting on my body. When I called back days later to ask the nurse practitioner to explain to me once again how they could have found nothing, she mentioned something they had neglected to tell me before.
“Your ultrasound did show a small valve prolapse, meaning that a trivial amount of blood is leaking around your valve,” she explained as I jotted down every word she was saying as quickly as I could write. “Normally it’s not something we would even mention, because it’s really nothing.”
Nothing? I wondered. Well, how big of a “nothing” could it be?
I decided to do some research on my own. After countless hours I knew this – my condition was called “Mitral Valve Prolapse Syndrome. Not only was it a key symptom of a nervous system disorder known as dysautonomia, it was also linked to several other conditions, such as depression, anxiety, chronic fatigue, and hypoglycemia. I called my cardiologist back and asked, if I had listed all these symptoms and they had found the valve prolapse, why had they not given me a diagnosis? The answer was simple and infuriating – it wasn’t considered a real disease. In fact, they hadn’t even had a case of it there before.
Two years later things are looking up for people with dysautonomia. Called “neurasthenia” in the late 1800’s, or the “fainting disease” – believed to be primarily a women’s disease – doctors would prescribe bedrest for those experiencing sudden, inexplicable symptoms such as low blood pressure, fainting, general pain and anxiety, and heavy fatigue. The 21st century is hailing new research to help the millions of people with some of the disorders or diseases caused by dysautonomia – but are doctors learning enough?
A crude explanation of the disorder is as follows: The nervous system has two parts – the sympathetic and the parasympathetic sections. In the body of a healthy person, those two sides work together to create the balance useful for the functioning of things we usually don’t notice – heart beat, digestion, breathing, blood glucose levels, and blood pressure. Caused by a viral illness, trauma, or even heredity, dysautonomia creates an imbalance between the two sections of the nervous system – resulting in frightening symptoms that can mimic other diseases. Usually there is no medical evidence found to suggest that you have these diseases, but the symptoms are present nevertheless. For example, hypoglycemia (an episode of low blood glucose) usually only occurs in people who are diabetic as a response to an overabundance of insulin released into the blood. Dysautonomia can cause hypoglycemia in a non-diabetic person by triggering the “fight or flight” response, which can cause a kind of “sugar dump” into your system, which your natural insulin will then in turn overcompensate for. As panic attacks can be a symptom of low blood sugar, they can become a cause or effect in this instance, creating stress that leads to insulin overcompensation or stress due to insulin overcompensation. Any way you look at it, it’s a struggle to deal with. People with dysautonomia can also experience periods of “remission” where all symptoms seem to completely disappear, only to relapse at a later date. The culmination of all these things not only contributes to depression but, as true to the vicious cycle the disorder is, can be caused by it as well.
Because of the long list of causes and effects, some of these which aren’t even yet fully understood (chronic fatigue syndrome, for example) it’s easy for a physician to declare a patient mentally depressed or paranoid, or worse, a hypochondriac. In the event a doctor takes symptoms seriously they are usually diagnosed as something else, depending upon which specialist you are eventually sent to. It is important to take note of every experience that seems out of the ordinary, in order to compile a list that may end up looking as varied as the North and South Poles to your physician. But even then, can you be guaranteed answers?
There is no cure for dysautonomia, but many people tend to treat their most prevalent symptoms to give themselves the best chance at a normal, functional life. Those symptoms can change, even after many, many years, so trial and error between a patient and their physician is imperative to finding the most efficient way of controlling the illness. But first your doctor has to acknowledge what the source of it all may be – and dysautonomia is a difficult diagnosis to get, to say the least.
At the other end of the spectrum, there are entire hospitals springing up around the country that are devoted to this highly misunderstood family of disorders. The Autonomic Disorders and Mitral Valve Prolapse Center in Alabama is only one of the many facilities dedicated to furthering research and developing treatments for those afflicted. Other states, such as New York, Florida,Tennessee, Ohio, and many more are finding the need to follow suit. Physicians studying autonomic nervous system disorders believe understanding the delicate balance of the nervous system could lead to breakthroughs in a number of resulting illnesses – seemingly related or unrelated.
