On the Same Page

Finally, there is someone in the medical field who was able to find something wrong with me. I had a tilt-table test on Wednesday, and the Nurse Practitioner who conducted the test said to me, “You definitely have POTS, but you aren’t the typical POTS patient. I think in your case, POTS is a symptom of a bigger disease.” She pointed out that the cough I have with the increased heart rate is not part of POTS. I told her what I thought about the heart problem, how when my heart beats too fast I thought I was developing a problem refilling my heart and it was backing up into my lungs. She asked for further details about how it felt. “Like I’m drowning,” I told her. She told me that she thought my theory was plausible, and agreed to tell the cardiologist that she felt like my POTS is not the primary disease. He has more work to do. In the meantime, I’m planning to send my test results to another cardiologist whom a friend of mine works for so I can get a second opinion.

A tilt-table test is exactly what it sounds like. They had me lie down on a metal table and hooked me up to an EKG, a pulse oximeter, and a blood pressure cuff. After dimming the lights and having me rest for 10 minutes, they tilted the table 70 degrees and had me stand there for 20 minutes. Every two minutes they checked my blood pressure and noted my pulse. It was that simple.

In order to be diagnosed with POTS, when you are tilted upright, your pulse must increase to either 120 beats per minute (bpm) or it must go up at least 30 bpm from the resting rate. I started with a resting rate of 60-70bpm, and when I was tilted upright, I went up to 130-140. My heart rate increased at least 70 bpm, and I topped out at 160. I unequivocally met the criteria for POTS.

Getting a diagnosis is both a relief and an obstacle. The NP (she is also C, so I’ll call her CK to differentiate her from my regular, family practice NP, CM) gave me a warning after she gave me the POTS diagnosis. She said that when I talk to doctors, they are going to try to blame everything on the POTS. More tired than usual? That’s just your POTS. A new food allergy? That’s just your POTS. A limb fell off? That’s just your POTS. I jest (at least with the last one), but she has an excellent point. For years I’ve been told that all of my symptoms are about my thyroid, and they clearly weren’t. They were also about my gluten allergy and POTS, and whatever else is wrong with me. Even though the POTS explains some of my symptoms, it doesn’t explain them all. The trick is to get the doctors to understand that and keep looking for the cause. This is why it was important that CK emphasized that POTS was just a symptom to the cardiologist. He thinks it’s my primary disease.

The quest to get me feeling better is far from over. The website I linked to in the beginning notes that it is important to find the cause of POTS because many of those conditions can be treated. The website lists several possible causes, and we’ll be investigating many of them – at least now we have some clear guidelines about where to look. In the meantime, we’ll treat the symptoms as best we can. As much as I would prefer to have the answer right now, I understand that it will take time. I guess all I can ask for is patience. Good thing I’m a knitter – I have something I can do while I’m waiting.

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