Back in December, I had a long day of tests at the Cleveland Clinic. After speaking again with the provider who ordered these tests, she shared that, while she did not think I had POTS specifically, she did think I had another, less common form of dysautonomia.
Orthostatic Hypertension
Orthostatic hypertension is when someone’s blood pressure suddenly shoots up when they stand. Generally, this requires a rise in your systolic BP (the top number) of at least 20 mmHG. We don’t know what causes this, but some conditions that are related are anorexia, inflammation of the aorta, narrowing of the kidney arteries, and type 2 diabetes.
According to a 2008 study, this condition affects just over 1% of the population. This condition isn’t super well known, meaning that there aren’t necessarily concrete treatment regimens for it.
Now, does this mean I don’t have POTS? Actually, no! People can have both. Some providers would still cause this POTS, but specify that it is hypertensive. There’s not a lot of agreement on how to diagnose or label this correctly honestly. Furthermore, this is a form of both orthostatic intolerance and dysautonomia, so it’s still in the same genre. To me, orthostatic hypertension makes far more sense as a diagnosis based on my symptoms and labs – and that’s true looking back a ways.
Cardiology + Treatment
Ritalin – which I’m on for my ADHD – can also help treat forms of orthostatic intolerance. We see this specifically in conditions like POTS. However, we know it can also cause hypertension on its own. So can testosterone.
Thankfully, the cardiologist that I saw is amazing:
My new cardiologist: "I'm not taking you off Ritalin cause that's how people lose their jobs."
Also: "I'm not taking you off testosterone either. I mean, that's who you are."
Also also: "I appreciate you thanking me, but I don't deserve a gold star for doing my job, kiddo."
— Grayson (he/they) (@GraysonGoal) February 1, 2023
I immediately was put at ease. I can’t think well without my Ritalin. Going off testosterone would literally cause an uptick in my chronic pain. Plus, I’d feel awful from experiencing the effects of estrogen again. There’s no way I was going to budge on these things anyway.
So, we’re starting with a medication to lower blood pressure called doxazosin. There is some evidence to suggest that this is a helpful medication for this condition. This medication is also an alpha-adrenergic blocking agent, a class of medications that is used to treat PTSD and nightmares.
I’ve also stopped my increased salt pills and diet, something that a previous provider recommended when he gave me a differential diagnosis of POTS based on symptoms and comorbidities. (No, he didn’t want to put me through a tilt table test at the time. I’m annoyed I didn’t press further.)
I’m testing my blood pressure at random times to be able to show how things are going at my next appointment. So far, though, I’ve had a general lowering in my systolic numbers which is great!
Outlook
Well, since this condition isn’t well-known, it’s not as well-studied as I’d like. Orthostatic hypertension is associated with higher risks of heart attack, stroke, and early death. Obviously, the goal is to not have those things happen. If we decide this medication isn’t working as well as we want at the end of this trial period, we’ll re-evaluate medications and see what else we might need to do.
I’m paying more attention to my both my pain and stress levels, as these can send blood pressure soaring. I am historically awful at balancing both of these things. Being in the middle of countries around the globe attempting to pass a record-setting number of transphobic legislation is not helping. This is part of why we talk about how stress kills marginalized and underrepresented folks.
I also had to fight all year to re-obtain access to Kineret after an insurance switch. (It’s been a whole thing.) My month-long shipment of meds arrived today. That along with having re-started physical therapy will both be beneficial.
If I could share one thing with folks, it’s this: get a tilt table test done before you accept a differential diagnosis of POTS. I’m kicking myself for taking steps that would’ve been great for POTS but probably ultimately will have taken years off my life because I received incorrect information. I don’t want that to happen to other people.
