Dysautonomia Awareness Month

Today is day 3 of Dysautonomia Awareness Month, where we share our story with Dysautonomia.

First, what is Dysautonomia? According to Johns Hopkins Medicine, “Dysautonomia is not a single disorder but rather a broad term that describes multiple conditions resulting from failure of the autonomic nervous system. This section of the nervous system controls automatic body functions, like heart rate, sweating, bowel motility and breathing. There are at least 15 distinct dysautonomias; the most common are neurocardiogenic syncope and postural orthostatic tachycardia syndrome (POTS).”

My story would take up an entire chapter (or three), so I will try to cut it down. I have multiple conditions due to Ehlers-Danlos Syndrome and Dysautonomia is one. I have never not know life without Dysautonomia. It used to be so bad that if stood up to grab something, my heart rate would go from 50 to 150 in a matter of seconds. I was left untreated and uneducated, living my teens and twenties without proper management. I have multiple forms of dysautonomia, which is partially what led me to getting a pacemaker.

Even though I smiled and had a beautiful day today, last night at 1am I went into an arrhythmia, followed by an adrenaline surge, shivering, poor circulation (pale extremities and lips) and a blood pressure spike. All triggered by my digestive system and high pain level (from overdoing it that night). This turned into a dominoes effect of my nervous system and leading to fight or flight response. I used to go to the ER for these episodes but found it was more dangerous than good, as the staff was in unfamiliar territory, thus causing health PTSD and delayed care. Instead, I took my emergency meds, put on my robe and heat pack, focused on my breathing, and monitored my bp until I went to sleep around 3:30am once I stabilized. I woke up at 6:30am and started my day, unphased. This is my normal.

I don’t want pity. I am not strong or this, or that. I share my story because advocating is awareness, and it’s ACTIVISM. This is why I am back in school. I am sick of millions of people being dismissed. I raise awareness for those who are desperately seeking answers but their healthcare providers don’t see or hear them. The medical field is tricky, taught that if you hear hooves to think horse and not a zebra. The zebras like myself are grassroots style, here to make a difference in the healthcare world. We need to shed the years of waiting for a diagnosis and get earlier treatment and care.

I should have had a pacemaker 10 years sooner. My heart had regularly fallen in to the 30s in my sleep, with documentation of as low as the 20s. I spent far too long with high heart rates as well, just stuck in rhythmic chaos. Now, in my 30s I am living with that irreversible damage of medical neglect.

I hope that I can help even just one person. This is why everyone’s story matters.

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