Dysautonomia International defines Dysautonomia as, “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.
In this episode, Misti and Amber share their personal experiences with autonomic dysfunction and share resources from Dysautonomia International.
” I suppose I’ve had Dysautonomia my whole life, but I didn’t know that’s what it was until recently.” -Amber
Amber’s Brief Story:
“I have had primary hyperhidrosis for as long as I can remember. My hands would sweat so much when I was little, that I would often injure myself as a result of my hands slipping or losing grip, at one point even resulting in a broken arm. It was always just a part of me that I lived with. It wasn’t until middle school, that I really noticed that my hands were different than my friends’ hands, and then in high school, it’s like my body went into overdrive. That’s when my symptoms from Dysautonomia really decided to show up full-swing. I often had adrenaline surges, feelings of my heart racing out of my chest (tachycardia) and even visual disturbances where I would lose my vision for a few seconds if I was overheated, or bending over in the shower. After struggling on and off over many years, I finally had an episode while doing a half-marathon that almost did me in. I got stuck in tachycardia (over 200bpm) around mile 8, and then couldn’t get my heart rate to come down for a few hours. The fatigue that followed that spell took me a month to recover from, often barely making it from the couch to the bed and back. It was then I found a team of physicians who looked at the bigger picture and linked my symptoms to Dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS). Since that diagnosis about four years ago, I have been able to link so many other childhood symptoms and have begun to manage my symptoms (with the exception of the hyperhydrosis) to a point that is much more tolerable. Dysautonomia looks different for each person affected by it, and while there is no cure currently, there are some amazing organizations like Dysautonomia International who are raising awareness and funding for continued research. Knowing that there are still so many people who suffer because they don’t have proper care or treatment, I am extremely passionate about advocating for those who live with it everyday, even more!”
“It’s important to note that everyone with a chronic illness will be different, with many variations of symptoms.” -Misti
Misti’s Brief Story:
“I was looking through old medical records and I discovered that I was given the diagnosis of POTS and IST at the age of 16, by my electrophysiologist. However, the doctor typed Potts disease, which is actually a tuberculosis spondylitis. We can already see how medical error, miscommunication, and typos can make a patient vulnerable to falling through the cracks, which I did. I fell through the cracks. I was never properly educated on how to manage my symptoms. I health with these symptoms my entire life. I don’t know any other way of life. I had no idea how to advocate for myself since, at the time, you never questioned a doctor; you just show up and put your trust in them. At the height of my cosmetology career in my early 30s, I hit rock bottom with my health. I remember scooting down the stairs because my heart rate would get so high when I stood up. I finally had a tilt table test and was diagnosed with a severe cardioinhibitory response. This is known as Vasovagal Syncope or Neurocardiogenic Syncope. I finally received a pacemaker. I am now 36 and it wasn’t until I was 33 when I finally started getting answers and the care I needed.
I was forced to change my life as I knew it, retiring from a full-time salon owner and hair stylist, thus having to reinvent myself. I launched my own product line from bed and enrolled back into school. I finished my AA and began my BS in biomedical science to further advocate for those in our community. Amber and I came together to launch The Invisible Diaries. Though changing my life was scary and unexpected, I am grateful to where this path has taken me. I can’t wait to see what is ahead!”
Sometimes in order to see the change we need, we have to be the change, and it’s one of the many reasons we created The Invisible Diaries. We want to use our voices to bring awareness to invisible illness. We believe advocating for health and awareness through sharing each other’s stories will bring more awareness to some of these debilitating conditions, and in turn provide more resources for advancement in research and treatments. If you want to learn more about Dysautonomia, check out our resource page for some great links! Thank you for listening to our Dysautonomia story and being part of raising awareness on an under-recognized disorder. Feel free to reach out to us if you want to raise awareness on your chronic, invisible, or rare disorder. -Misti and Amber