When Dysautonomia Found Me

You probably won’t see it coming. I didn’t. I woke up one day feeling perfectly OK, a little over two weeks after wisdom teeth removal, took my ADHD meds, bought Starbucks, and went to my job, which started at 5. At around 7 I began not feeling well. I think I may have even ended the session early. I’d had the feeling before, but usually when I hadn’t eaten anything. So I ate some oatmeal and went to the meetings with my team.

I progressively felt worse. I remember hanging on to the chain-link fence as my coworkers smoked and they asked me if I was OK. I wasn’t. A coworker asked if I wanted her to get our MA to take my vitals. I said I felt I was OK for now.

Then in the second meeting and building, things got even worse. Sitting in the chair, my hearing became muffled and my vision felt like I was swimming. I knew I would pass out with no help. So I called that coworker’s name a few times.

She got help, and I lay on the floor with my feet up for a very long time (BP was emergency high and was very tachycardic) and eventually they convinced me to go to the ER. Part of it was my decision-making skills were not really there as I was confused and still felt awful.

Like many with dysautonomia, there were no answers at the ER. But I do remember what the doctor said: “Sometimes these things just happen; it usually doesn’t go beyond that.”

Now, one month short of four years since that happened, I can say that he was wrong. Before that day I had never been to the ER — now I have had hundreds of ER visits and over 10 hospital stays in a year.

I keep getting worse.

And now I know why. My cardiologist keeps saying I’m a puzzle and we have some of the pieces but are struggling to get others. In Feb 2018, I was diagnosed with POTS which was then verified by an autonomic specialist. But two years later, this same specialist has now decided that I have autonomic neuropathy, which can be degenerative if a cause is not found and treatment not started.

We are working to find what caused all this, but I also have learned to face my own mortality. I have had anaphylaxis more times than I can count. And with the severe MCAS and the autonomic neuropathy, I have no clue what will happen day to day. All I know is I won’t stop fighting. All I know is one day I felt OK and then that all changed.

Chronic illness is unpredictable. But so is life.

Whatever you are facing, I know you’ve got this.