ID: The words New Blog Post in the upper right hand corner, beside the title What is Dysautonomia? Beneath is the sentence: Dysautonomia is an umbrella term for many types of autonomic nervous system dysfunction.
October is Dysautonomia Awareness month. Dysautonomia is an umbrella term for many different types of autonomic nervous system dysfunction. Basically our autonomic nervous system performs many tasks– automatically. But for some of us, our nervous systems don’t function properly.
In 2016, at age 26, I caught a virus just as I was moving. I was really sick, but I had to push through the discomfort to finish the work of packing, moving, and unpacking. I took time off of work, rested, and focused my energy on healing. Unfortunately, I never seemed to recover– my nausea turned into daily vomiting and soon I was struggling to get out of bed. Between headaches, fatigue, and the near constant vomiting, I was trying to find any information about what I might be experiencing. Starting with Ehlers Danlos comorbidities, I eventually narrowed it down to Postural Orthostatic Tachycardia Syndrome (POTS) or Mast Cell Activation Syndrome (MCAS).
I spent a week performing “at home” tilt table tests and noticed a huge 40+ bpm shift in my heart rate when changing posture. The next step was contacting my primary care physician and getting a referral to a neurologist. After weeks of waiting, I was finally at the appointment with a neurologist. It was disappointing. The doctor seemed unaware of Ehlers Danlos Syndrome (EDS) and said things like, “well we just don’t know very much about the brain.” While he’s not entirely wrong, his attitude and general lack of understanding was deeply concerning. He wanted to take a wait and see approach even as I explained that I had lost more than twenty pounds and was having trouble keeping anything down. Luckily, I realized that the clinic didn’t actually take my insurance (after accepting and scanning my insurance card and telling me I was “all set” at the first appointment.) I don’t know that I would have been brave enough to get a second opinion otherwise.
I began the process of finding a different neurology clinic– one that understood EDS and was currently accepting my insurance and new patients. More than three months after the onset of my illness, I was finally seeing a provider who would be able to help me. It was another few months before we started to find treatments that worked for me– including exercise, mindfulness, saline infusions, and medications. My gastroenterologist performed a test to see which feeding tube would be best for my condition just before I was able to start keeping food down again. In total, I lost over 30% of my body weight before I was able to turn it around.
I want to speak plainly and clearly– I turned it around. I diagnosed myself. I then advocated for myself, multiple times to multiple doctors. I spearheaded my treatment. I looked up all the information I could find about EDS and Dysautonomia. I found what worked and what didn’t. And I turned it around. I was aided by my doctors but my medical journey has been predominantly self-directed. I am proud of the ways I have educated my doctors about my experiences, conditions, and needs. And even more proud of the ways I have advocated for myself.
Some of my Dysautonomia symptoms include: irregular pulse and blood pressure, inability to regulate body temperature, “inappropriate” sweating (ie. when cold), brain fog, headaches, nausea, gastroparesis, and difficulty swallowing. Some of those symptoms have underlying causes that are rooted in my Ehlers Danlos Syndrome, as well.
Recently, the CEO of the Ehlers Danlos Society, Lara Bloom, shared about her experience with Dysautonomia. Many things about her experience struck me. I’m often baffled by other EDSers whose stories are so similar and yet so different from my own. I want to break it down.
Lara: For me, my autonomic symptoms have always been the most debilitating.
Many years after the onset of my symptoms, my physical therapist said something similar to me. They explained that I was disabled because of my Dysautonomia. They pointed out that while my EDS is serious and can be a complicating factor, I had been able to work before this infection and lingering illness. She helped me see that it was the autonomic dysfunction that put working, and many day to day activities, outside my capabilities.
Lara: In 2007 I got an infection that resulted in me being hospitalised, and from that day forward I developed Postural Tachycardia Syndrome.
Almost 10 years later, I was fighting an infection and beginning my own journey with Postural Orthostatic Tachycadia Syndrome (POTS).
Lara: Every time I stood up … my heart was going so fast [I] couldn't catch my breath. They told me I was anxious
It has been a challenge and a priority for me to find practitioners who understand that I experience anxiety and Dysautonomia. They are both valid, real diagnoses. And they can affect one another.
Lara: I … managed to get to a specialist unit in London and I was readmitted and spent a long week of testing which led to my diagnosis.
This really surprised me and left me with so many questions. How? What kind of specialist? They just admitted you? I’m not sure if our experiences diverge so drastically due to expressions and progressions of our illnesses, location, year, or economic status. I struggle to think of any hospital unit that would have admitted me, even at my worst. As an average, American patient I was extremely lucky to find a doctor who was knowledgeable, accepting patients, and took my insurance. But a clinic taking the time and space to watch me over the course of the day and week would have been so helpful.
Lara: but what really changed everything was when I started training for the marathon in 2010.
I am not cleared to run. I had hip surgery in 2015 and I don’t anticipate ever being cleared to run. Recumbent biking has allowed me to do a cardio workout while remaining as reclined as possible.
Lara: It was the first time I pushed myself past the fatigue, the racing heart, the tired painful muscles, and I could not believe how much it improved my symptoms.
I just completed a Functional Rehabilitation Program through my pain clinic. It was the first space that felt safe enough to push myself. My recovery wasn’t expected to be linear. It hasn’t been long enough to really determine all of the program’s benefits and effects, but overall I have been surprised and grateful by how much this program has helped me.
Lara: Do I still have flare ups? Sure… But I have my quality of life back in a way that felt impossible back in 2007.
This post rattled around in my head for a few days. She has an extra nine years of recovery over me. Posts like these make me believe that with lots of work and time it’s possible that my quality of life could get better.
Lara: So much more awareness and research is needed in this area.
Take a moment to learn a little more about Dysautonomia!
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