Last time I wrote about my health, I had an inkling of what was going on with me, and now I have some diagnoses to work with. Thanks to my readers for their support as I grapple with my health changes.

I knew I had some form of dysautonomia, but I was having trouble finding a doctor who was curious enough about my various symptoms1 to give me a diagnosis. I finally found what I needed through the EDS Clinic, with a hat tip to Bryan Guffey for pointing me there.

It was a Telehealth appointment, which allowed for visual tests like mobility and basic orthostatic tests, but lacked blood work, so some of these are initial diagnoses that could change. Just that morning I’d had an orthostatic pulse and blood pressure reading at Gundersen Health, so I was armed with the numbers and observations from that. I came out of it with diagnoses of:

None of these are surprises — I had done extensive research on autonomic disorders and knew where my symptoms fit (and where they didn’t). Thanks to a growing database in DEVONthink and some research help from my partner, I had a cross-referenced list of symptoms and possible correlations ready to go. I’ve found that with rare diseases — especially ones that don’t show up in blood work or show up with results that are individually explicable in other ways — it’s best to show up armed with as much information as possible. Thankfully, because the clinic specialized in EDS, the physician was ready to listen and fully versed in the various disorders and syndromes comprising dysautonomia.

So now that I have some diagnoses, I’ve started treatment, and things have improved markedly. Some interventions — like increasing water and salt intake and applying abdominal compression — are easy and have already improved my POTS symptoms, which include dizziness and syncope (passing out) when standing up. I’m more functional than I have been in six months. And I’ve started medications, both over the counter and prescription, which have started to help symptoms like constant dizziness (even when seated or prone) and skin burning. I’m still dizzy as I write this, and some of these interventions might take a while, but things are getting better.

I’ll follow up with some blood work, and I need to find EDS-aware physical therapists, but I have referrals and orders for all of that. It’s such a relief to be making forward progress. I’ve communicated with people with similar diagnoses who’ve told me that it took two or more years (in one case six) to get a diagnosis and treatment.

I’ve joked that my current title is:

Brett Terpstra BFA, ADHD, SUD, BD, RTS, CPTSD, HSD, POTS, MCAS, TOS

Which is quite a Scrabble board, but it looks more impressive than just having an “MD” after your name, right? I only went to college for four years, but I’ve gathered a lot of letters since then (and none of them great).

I’m so thankful for my community — from readers here to Facebook to Mastodon to real life friends and family — and the leg up I got by sharing openly and receiving information from them. I know that I might be risking some privacy by sharing too much, but the benefits have been great thus far. I never would have gotten to this point without help. I have further to go, but I feel like I’ve cleared some major hurdles at this point.

And seriously, I need to write about DEVONthink and how useful it was in all of this. I’m hesitant because I have so much more to learn about it, but the more I talk about it and hear from other people, the more I realize that so many users are in the same boat: using it for specific reasons but feeling like they’ve only scratched the surface of its capabilities. So I’ll probably write about the subset of features I’ve used for this specific research, rather than write a whole book about it2. Stay tuned.

References:

  1. Constant dizziness, passing out, skin and bone pain, changing vision, etc. etc. ↩

  2. Take Control of DEVONthink 3 is a great book and I’m learning quickly thanks to Joe Kissel’s excellent instruction. ↩