October is National Dysautonomia Awareness Month
A few years ago, our family didn’t know what that meant. Why did we need to be aware of it? We had never even heard of dysautomonia. Until our daughter, Lorelei, was diagnosed with a form of it.
Dysautonomia is a broad medical term used for a group of complex conditions caused by a dysfunction of the autonomic nervous system (ANS). Basically this means the things your body usually does automatically stops happening automatically. Dysautonomia comes in many forms, but they all involve the autonomic nervous system. The ANS is a control system that acts largely unconsciously and is responsible for maintaining your body temperature, regulating your breathing patterns, keeping your blood pressure steady, and moderating your heart rate.
Lorelei’s form of dysautonomia is called postural orthostatic tachycardia syndrome (POTS). At her worst, she couldn’t walk across a room without fainting or having a seizure. One day she was a competitive dancer and athlete, the next she was in a wheelchair, laying in a hospital bed at Golisano’s Children’s Hospital. Wewere sent to cardiologists, neurologists, psychologists; she had to wear a heart monitor for 30 days; sleep with metal discs from an EEG strapped to her head; and have many rounds of blood work, all meant to figure out why our once strong and healthy daughter is now suddenly so weak and fainting multiple times a day.
We were lucky – Lorelei was diagnosed in just a few months. Often people go years being misdiagnosed or undiagnosed.
We immediately started going to The Body Shop in Sherrill for physical therapy. Jeff Brown, the owner and physical therapist, was wonderful. He learned about her illness and began working with her multiple times a week, at first even re-teaching her the basic skills she had lost. As she got stronger, she worked her way up to riding an exercise bike, then eventually walking and jogging on the treadmill.
Lorelei was on 14 prescription pills a day at that time. She didn’t take any daily medications prior to this illness! She is down to only four pills a day now. It’s been 4 years since she was first diagnosed with POTS. She is back in school, playing sports, and rarely ever faints anymore. She is lucky; about 25 percent of people diagnosed with POTS can’t attend school or hold down jobs and are on some form of disability.
We are so thankful she no longer faints regularly, but with her autonomic nervous system not always functioning properly, it leaves her dealing with a wide range of other symptoms, including frequent aches and pains, feeling faint (or actual fainting), nausea, extreme fatigue, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms, sweating, dizziness, blurred vision, numbness and tingling, pain, and (quite understandably) anxiety and depression.
So, now our family knows what dysautonomia is and more specifically, what POTS is. We don’t judge whenwe see a seemingly “normal” person with a handicap parking sticker or in a wheelchair. We hope to make more people aware of the various types of chronic and invisible illnesses that so many people like our daughter are living with daily. Jackie, Scott and Lorelei