Today I spent 3 hours getting autonomic testing at my new neurologist’s clinic and my mind is spinning from the info that came out of it.
I had this testing done at a hospital in 2013 when I was much, much sicker. The results were “inconclusive.” I wasn’t diagnosed with POTS because my heart rate didn’t go high enough and I was unable to complete the valsalva maneuver because I was simply too weak. I could barely make it through a conversation back then, so exhaling forcefully for that long wasn’t in the realm of possibility. I was subsequently diagnosed with orthostatic intolerance, a different form of dysautonomia, and I’ve been trying to manage it ever since with blood pressure medications, salt loading, compression stockings, IV fluids and all the little lifestyle changes I was advised to make (leg muscle tensing, elevated head of the bed, drink 16oz of plain water upon waking, electrolytes, not standing up too quickly etc.).
For the testing today, I hadn’t taken my BP meds, hydrocortisone, H1 and H2 blockers or any other medications or supplements in 60 hours (except my hormones because, damn you, period, don’t you dare think about peaking your ugly, angry red head in the door). I haven’t done IVIG or IV fluids for 3 weeks. I felt like crap this morning, I was fasting, I couldn’t have my pint and a half of strong, black tea to kick my life-force into gear and I only slept 4 hours. I was a bit nervous of the testing, but… I felt better leaving the clinic than I did arriving! Even after a blood draw.
The good news is, I could do the valsalva test — it’s really hard, but I had the muscle strength to do it — and I was fine during the tilt table test. My feet still felt like they were going to explode from the blood pooling and my neck got stiff and sore, but otherwise there were no issues. I remember how weak I was during this test in 2013, how I had to have them put the table down because I felt my vision blacking out and I had crippling vertigo for a full two weeks afterwards. I even wound up seeing a neurologist about it because I didn’t want to walk into walls for the rest of my life. Back at home today, I have a pretty bad headache and my neck feels stiff, but otherwise, I’m okay. It just feels so good to have some comparative evidence of my progression and resiliency.
The results from today’s tests were 1) normal respiratory sinus arrhythmia, 2) normal QSART (quantitative sudomotor axon reflex test) result, 3) blunted valsalva ratio on 2 out of 5 tests (I’m not really sure what that means) and 4) the kicker: I have a new diagnosis: Hyperadrenergic POTS. I can’t believe it.
My BP is never, ever, ever in triple digits. I’m on Midodrine three times a day and about to start Fludrocortisone. Hypotension has been the running theme throughout my entire life, even before I was sick. Gotta get my blood pressure up, gotta drink water, gotta eat salt. My at-home lean tests (“poor man’s tilt table test”) have never shown a systolic BP higher than mid-90s, but, today, my resting supine BP was approximately 105/70 (what??) and, while upright, it got as high as 139/something (say WHAT?!).
I don’t know what to think. Suddenly I’m being told not to start the Fludrocortisone prescription I just filled and to reduce my Midodrine.
I have to research hyperadrenergic POTS, I only know a bit about it and I have no idea if it will change the direction of my care besides tweaking meds, but I’m THRILLED to show a higher BP, even if hyperadrenergic POTS is bad news. It makes me wonder if I should come off all of my medications and supplements!
Wow, you have been through so much lately!
Sorry to hear about your new diagnosis. I have hyper POTS. My resting BP isn’t as low as yours, and while it increases when I stand, it doesn’t get super high. But I do have elevated standing norepinephrine.
I’m glad you were told to hold off on the Fludrocortisone for now. I had a bad reaction to it, and I think that’s not uncommon in hyper POTS.