From the Editor: October is Dysautonomia Awareness Month, so here’s my story
I was diagnosed with Dysautonomia in April 2015 after a seven year search for answers.
My symptoms started when I was 11, I suddenly had chronic abdominal pain that got worse with any type of exercise. I was excused from physical education classes, and my time became consumed with doctor appointments and tests. They couldn’t find anything wrong with me after checking my whole digestive system, and eventually a doctor said it was in my head and I was left to cope with the pain on my own.
Four years passed before I experienced new symptoms: I couldn’t eat, drink, or sleep. My pain became severely worse if I ate anything other than rice crackers. I also had debilitating nausea, which was worse after drinking anything other than water — which I couldn’t do on an empty stomach. Pain medication didn’t help, but I often took anti-nausea medication which, in turn, allowed me to get some sleep. This time, I was bedridden for four months and put on the homebound program at high school, but was ultimately excused from the final term and provincial exams for being unable to complete the homework.
I was admitted to the hospital when I became dehydrated. Doctors searched my digestive system again, and again I was told it was in my head. My mom took me to a naturopath, and my stomach acid level was tested — it was severely low. I was given hydrochloric acid pills to take before each meal and put on a gluten, dairy, soy, egg, nut, and lentil free diet — a “food free” diet I called it.
Almost immediately things changed. Not only was I able to eat again without pain and nausea, but for the first time in four years the constant abdominal pain was gone too. I felt normal, even if my diet was incredibly restrictive.
The next year was normal. I was able to attend every class, do my homework, sleep, and hang out with friends. It was an adjustment to arrange my food ahead of time for every outing, but I was grateful each day I could be a part of life again.
In the second term Grade 12, I experienced symptoms again, this time unrelated to exercise or food. In fact, my diet didn’t matter anymore — I could eat almost anything. Instead I experienced bouts of crippling chest pain that prevented me from standing. It felt like a painful weight sitting in the center of my chest pulling me down, and if I tried to resist then I struggled to breathe through the pain.
This went on for five months. I did the bare minimum of schoolwork so I could graduate high school on time. Doctors, again, didn’t know what to do with me. Through word of mouth, a cardiologist at B.C. Children’s Hospital heard my story and wanted to meet me. I had given up on my life at that point, but my mom was desperate to get me the answers I deserved and took me anyway.
The doctor diagnosed me at our first appointment with Dysautonomia. It’s a dysregulation of the autonomic nervous system, which is responsible for involuntary functions of our body like breathing, blood pressure, digestion, and body temperature.
“The average diagnosis rate is five years, which is a really long time to be waiting,” says Kate Bourne, a PhD and MD student at the University of Calgary studying cardiac science and works for the Calgary Autonomic Investigation Lab.
“Most patients are a younger age and making career and life decisions, so having to wait for five years when you’re really sick is terrible,” she says.
It was. I was lucky I got diagnosed when I did. I wouldn’t have been able to start my treatment that summer so I could attend university in the fall. And treatment doesn’t mean cure, it’s management of incredibly random symptoms that are out of our control.
Bourne says some patients need medication to regulate their heart rate or increase their blood pressure or blood volume, others need to double their salt and water intake, and some need to do gentle exercises to keep blood flowing in their body. She is currently studying the effectiveness of compression garments.
Today, eight years later, I still require twice the amount of salt and water the average person needs in a day. I also did acupuncture, slowly increasing the time between sessions, which seemed to help my nervous system communicate — but there is no research on this. Since I turned 18 I’ve been on my own, listening to my body and doing trial and error with treatment.
In the Big Postural Tachycardia Syndrome (POTS) survey, students did an analysis of Canadians compared to Americans and found that the diagnosis delay for POTS is longer in Canada and more Canadians were being misdiagnosed, Bourne says. This is in part due to a lack of labs, research, and funding.
Dysautonomia International estimates 500,000 to 3 million Americans, and millions more worldwide, are impacted by POTS. There is much to learn about Dysautonomia before we can understand how to help the people who suffer from it.