Yesterday was a very overwhelming day, but I’m going to try my best to make it somewhat comprehensible.
After six months of waiting (seriously, I scheduled this appointment in January), I finally had my appointment with Dr. Wilson. He’s a neurologist who specializes in POTS and has patients come from all over the country to see him. And now it was finally my turn!
I started to feel anxious as soon as we got off the highway at the exit; I’ve driven it myself hundreds of times to and from work, but my hospital phobia started to kick in. It had been three months since my last appointment, but it didn’t feel long enough to me.
I submitted myself to the wheelchair this time because it was very hot and humid outside, and we parked in the employee garage to get free parking. (Haha, free. The amount we pay per month as employees for parking is ridiculous…) Plus I knew Dr. Wilson would likely be doing testing that would probably make me not feel too well after the fact. I felt so self conscious, afraid of bumping into someone I knew.
I’ve never waited so short a time in a waiting room before. I was expecting to wait a long time, but I was called right back as soon as we’d settled into the waiting room! The lights were off in the exam room (this guy is smart), but there was enough light coming through the blinds to be able to see. The nurse did an initial blood pressure and heart rate and said Dr. Wilson would do the orthostatics himself. We only waited another five or so minutes before Dr. Wilson came in.
I liked him right away. Very personable, but he sat down and got straight to work. He said he’d read my chart and, “Holy cow, all this stuff happened in 2016! But 2017 kind of just…” Yeah. I had to explain that I was diagnosed with POTS in January, but have essentially remained untreated since, with the exception of lifestyle modifications that haven’t helped much. Luckily I had typed up my medical history starting with my celiac disease diagnosis in 2012 to the present, so I basically read that to him while he typed. He was impressed at my organization and level of detail (that’s just me being me, haha) and asked for a copy, so I just gave him the one I had.
He immediately started making connections as soon as I said “celiac disease.” That was a huge red flag for him in terms of issues contributing to the POTS, likely due to the fact that celiac is an autoimmune disease and autoimmune diseases have a tendency to contribute to POTS. And while endometriosis is not autoimmune, he notes that there have been some correlations noted between it and POTS. Regarding the brain tumor, he said issues with the pituitary gland are seen more often in POTS patients than in the general population. He said the bone-crushing fatigue I experienced beginning immediately after my brain surgery that had me sleeping 16-20 hours a day was a glaring sign that the POTS was starting to make itself known; surgery is a known trigger for POTS.
While there is no true causation noted between POTS and any of these diseases, a correlation has been noted in that these issues have been seen more often in patients with POTS. Between all of these, he was most convinced that the celiac disease had essentially been the first insult and the addition of the other conditions (endometriosis, brain tumor, brain surgery) just caused my autonomic nervous system to decline from there.
Following all the chatting, we got down to a physical exam. First was a supine blood pressure and heart rate, which were 137/92 and 93, which are quite a bit higher than normal for me while supine. Then I had to stand absolutely still for about five minutes and he measured my BP and HR about once a minute. The results were quite surprising to me:
- 127/96, 98
- 125/93, 110
- 134/100, 114
- 130/95, 95
- 130/86, 99
- 135/82, 103
Keep in mind this was happening as I was standing still, not moving at all. I couldn’t rock back and forth or even wiggle my toes. (But I didn’t lock my knees, since I know from years in choir that that can make you pass out.) About halfway through, I began to feel a bit woozy and as he was asking me questions, I was having a hard time thinking of how to respond. He asked me at one point if it was a bad day for me and I said, “No, this is normal.” This is normal. When the heck did THIS become normal? He said, “Right now your heart thinks you’re walking on a treadmill at 3 mph.” Seriously, heart? He said I might be having an adrenaline dump causing the numbers to be high and that if we went longer, my blood pressure might bottom out and I’d pass out. (Notice the diastolic beginning to creep down?)
This is what happens to some people who pass out during tilt table tests, even if they’ve never passed out before. Luckily, we stopped. Whew.
My physical exam was pretty normal. He noted the hyperreflexia in my legs, as have at least three other physicians in the past year and a half. (Seriously, my legs jerk out and then swing back and smash the table before I regain control.) But he was the first to tell me it might be due to the damage from the brain tumor. Huh.
Then he had me do a timed walk of 100 feet in 25 seconds while hooked up to a pulse ox and heart rate monitor. He raced up and down the hall with me (it was a short hallway, so we had to turn around several times) holding the monitor while saying, “Interesting, interesting…fascinating…that’s incredible…oh, you poor girl.” I had no idea why he was saying these things. My resting heart rate before starting was 98 and it ranged from 89-122 during the test. I thought that was fine given how fast I was walking.
But he said, “If you put me or another healthy adult in the hallway and did that, our heart rates would stay in the 50s-70s the whole time.” My jaw was on the floor. Had there been a time in my life when I had been that healthy? Obviously there had been; as a former dancer, I used to be the epitome of physical health. But that seems like a lifetime ago. My heart sank as I realized what I’ve lost.
Based on his assessment and our discussion of my symptoms and medical history, and after spending a full hour talking with me, Dr. Wilson confirmed that I am a “classic” case of POTS, no question. He said, “As soon as I saw your blood volume and hemodynamic test results, it was obvious you have POTS.” I have a slew of follow-up stuff to do:
- Start Florinef, with a lot of flexibility to adjust the dose as I see fit.
- Switch to above the knee compression socks (anyone know any good brands?)
- Possibly an abdominal binder (which I have two of from my endo surgeries in Atlanta and which I HATE because they ride up and squish my boobs…so we’ll see…)
- 11 different labs to rule out other causes or mimics
- Cardiac rehab consult (which I will do this time…I honestly wasn’t ready in February, but I am now.)
- Two ultrasounds: mesenteric artery vasculature and renal venous vasculature to check for thrombosis, given my continued pelvic pain and severe bloating. (So help me if it’s this man who discovers the cause of my remaining pelvic pain, I will kiss him.)
- Participating in shared medical appointments as I can, where he discusses aspects of POTS in a group setting with other patients.
As we were wrapping up, Dr. Wilson said, “I’m really hopeful about you. I think you’re going to do really well.” Note to doctors: it is incredibly empowering to a patient if you express optimism to your patients when it is due. It can make all the difference in the world in how your patient perceives their condition.
I’ll admit I need some more time to adjust to all these new developments and consults and tests before I will share that hopefulness and optimism. But it’s more than I’ve felt in close to a year. So I’ll take it.