I have a colorful new diagnosis. (I also have gastritis, probably as a result of being allergic to everything.)
I’m not inflammatory (IBD), but I’m pretty salty. Postural Orthostatic Tachycardia Syndrome (POTS) is a type of dysautonomia officially characterized by a heart rate increase of at least thirty bpm upon standing. This tachycardia is often associated with a drop in blood pressure (orthostatic hypotension), though clinically OH warrants its own additional dysautonomia diagnosis. There are multiple types of dysautonomia. I seem to be able to catch ’em all.
It is unofficially diagnosed by fainting. This has happened more than once, but my rheumatologist (and the doctors at the ER the first time) attributed it to stress. Anxiety may be part and parcel of ADHD, but I’m not a Victorian-Age heroine with a too-tight corset. Fainting was my Rubicon: the statistician resorting to playing doctor.
No one is more afraid of looking like a hypochondriac or being dismissed as crazy than me. However, I have access to reputable journals, and I know it can take years to get correctly diagnosed if you don’t self-advocate.
My blood pressure has been weird at my appointments. It has often – but not always – been at the lowest end of normal. These anomalies correlate with my more symptomatic days. “Hey, my BP is reading lower than it has in all the years I’ve been seen regularly for migraines. I wonder if that means something?” My rheumatologist was not impressed. While low for me, he saw only borderline low for population norms. Has no one taught him about within-subjects research designs?
I bought a BP reader, entered ADHD hyperfocus, and tried tracking “just in case,” both when I felt symptomatic and when I felt relatively normal (baseline). My heart rate and BP were definitely fitting! I eventually learned about (and did, with an EMT friend’s guidance) the Active Stand Test. I also managed to take a reading immediately after a fainting episode, and I was no longer clinically normal. My primary care doctor repeated the AST and some other exam-room diagnostics and got the same results. She referred me to a doctor who, while not a dysautonomia specialist, has experience with it. That doctor arranged more testing alongside the GI tests and suggested some non-pharmacogenic treatments to start sooner.
I know it’s not ideal to treat, even non-pharmacogenically with doctor’s guidance, before seeing a dysautonomia specialist. I don’t know if I’ve effectively conveyed, though, the magnitude to which these symptoms have affected my daily life. I find it fitting that POTS is a four-letter word. My other four-letter diagnoses regularly give me the middle finger! I’ve seriously wondered over the past six months how I can keep my job with the constant lightheadedness and brain fog.
It’s not fiscally viable, though, to take unpaid FMLA. I live in one of the most expensive cities in the country. The U.S. is routinely on the verge of dismantling the ACA, so I can’t assume I’ll always have insurance if I lose my current job. I can’t see anyone wanting to hire someone at my pay grade once they know I have a chronic illness. I have seen how many loopholes exist in federal/state law that can be used to discriminate without triggering the ADA. I have always kept soldiering through work on bad days, saving the paid days off for medical appointments. I have always smiled and said I could manage, and I’m not sure I’d ever trust any boss enough to admit how rough it is. I know far too much about how risky that can be for people with disabilities.
The “fibro” vs. “dysautonomia” distinction isn’t huge. Symptoms of both involve pain, migraines and IBS. Throw in dizziness, hypersensitivities and confusion for good measure. I bet fibro can make a person faint, too. Dysautonomia doesn’t even necessarily rule out fibro. The various dysautonomias are often co-morbid with fibromyalgia, ME/CFS, and/or autoimmune or neurological disorders.
The symptoms are similar, but the treatments differ. There are firstline drugs and lifestyle modifications for dysautonomia that aren’t beneficial for fibro alone.
I can only now start to explore meds. (Though, doctors sometimes prescribe ADHD meds for dysautonomia. I may have been semi-medicated this whole time?!) Consuming ridiculous quantities of salt, drinking ridiculous quantities of water and wearing compression stockings could be done without insurance pre-approval. It seems appropriate that one mainstay of a four-letter diagnosis is mega-dose saltiness.
I am far from truly fine, but these complementary measures have started to at least help. I’m hopeful targeted meds could help even more. I would never have known about dysautonomia as a concept if I hadn’t gone ahead and tracked my data. I’m alternately proud of myself and terrified someone will eventually retract the diagnosis because of my unorthodox role. It’s good there are clear numeric criteria, or I’d probably continue to doubt it myself. (If you cross that Rubicon, remember the plural of anecdote is not data! I kept careful records of my symptoms for weeks before I started to feel confident enough to share them. Data scientists’ cardinal rule: first, do good data.)
Now what, you may ask, does any of this have to do with Nazis? They, unlike me, are quite inflammatory. I would like to give them a few four-letter words of my own if they succeed in getting a permit to rally in my city this weekend. Unfortunately, that is beyond my current physical capacities. Has anyone on the Internet figured out a way to FaceTime protest? I don’t want to have to tell my grandkids that I did nothing when fascism was ascendant in my backyard. However, though I’m very new to the diagnosis, even I know standing for hours in the August sun and possibly being trampled if I faint is one of the lowest levels of Hell No in Dante’s Dysautonomia.
I need a realistic alternative. Any ideas? (For the record: 993 words! Boom!)
Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.