Patricia’s Story
Patricia (excerpt from Stryker, 2024)
I think [singing] is the most important form of self-expression that I've connected with. Throughout my entire life, it has been a constant place of support, a source of happiness and exploration. It's both emotionally and creatively fulfilling for me. It's a way to wind down or get in touch with myself.
Patricia is a college student, studying voice privately with a voice teacher outside of her school. She sings with a traditional Greek band and writes her own indie folk music. She began singing and started voice lessons around age nine or ten. During middle school, she performed in musicals and went on to a performing arts high school as a voice major, where most of the training was classically based.
In her preteen years, she had been diagnosed with mitral valve prolapse, “like a heart murmur,” and juvenile myoclonic epilepsy. After a couple of years of treatment, she suddenly had new symptoms.
I experienced a fainting spell at the dinner table seemingly out of nowhere, and a week prior I was at a doctor's appointment and my blood pressure was extremely low, (approx.) 90/40. These symptoms progressed over the year, making climbing stairs difficult, bending down would induce near fainting; waking in the morning, doing dishes, going on walks, and even just standing upright for a few minutes would cause intense dizziness, disorientation, confusion, and eventual fatigue that disrupted my life. However, I assumed these symptoms were due to my anti-seizure medications since they were causing many other physical side effects as well.
Her PCP recommended she see a cardiologist. The appointment got pushed due to quarantine in 2020, but she was able to get in a few months later. The cardiologist ordered an EKG (electrocardiogram), cardio stress test, and a tilt table test. After doing the tilt table test, she reflected that she “did feel pretty dizzy, but that was what she felt like every day.” They gave her a nitroglycerin tablet and her heart rate “skyrocketed.”
At first, the doctor comes over and he goes, “Are you okay? Do you feel okay?” and I was like, “I just feel a little dizzy,” and then as I was saying that I was like, “oh wait, no. I’m about to pass out.” And they quickly tilted me back and gave me an IV to give me fluids.
The doctor concluded that he believed she had vasovagal syncope, but her cardiologist noticed that from the moment they put her upright, her heart rate increased by 30 bpm and stayed there. She was then diagnosed with POTS. Patricia’s doctor took “baby steps” in treatment, because “the research about POTS is limited and she wasn’t sure what I needed exactly.” They started by increasing water and salt intake and getting compression socks. This treatment lasted one year with no change in symptoms. Her doctor then recommended the Levine protocol, a form of cardiac rehabilitation, but her insurance didn’t cover it. She was doing it on her own and it only worked for a little while, until the dizziness returned and didn’t improve after three months. Patricia returned to her doctor who noticed that her sodium levels were low, “which was strange because I was eating a lot more salt.” Her doctor asked her to replace one bottle of water per day with Gatorade, which made a small change. At that time, she started experiencing what they thought was acute thyroiditis, but she tested positive for autoimmune antibodies and was diagnosed with Hashimoto’s Thyroiditis. The POTS symptoms gave her a high heart rate upon standing, but the symptoms of thyroiditis that she was experiencing made it so the heart rate would stay high even after laying down.
So, they gave me medication for thyroiditis and a beta blocker for my symptoms. I went on it, and for the first time in two or three years, I went, “oh my god! I feel normal!”
Once her thyroid was regulated, they took her off the medication for that, but she asked if she could stay on the beta blocker. Her doctor agreed because she had reacted well to it, and with that and the electrolytes from the Gatorade, her tachycardia was under control. She was still experiencing dizziness, and her doctor informed her that the Levine Protocol, cardiac rehab, was now being covered by her insurance as a treatment for POTS. “I started the rehab program and it changed everything!”
Patricia shared that her experience of singing while navigating her POTS symptoms was difficult.
It made it very difficult to stand and sing, or sometimes sustain long phrases and keep my breath stable. My heart rate would jump all around and I would feel dizzy. The dizziness would affect my focus, which made it hard to sing something challenging or for long periods of time.
As she learned to manage her symptoms, she could handle minor dizziness by taking short breaks and sitting down to drink some water, sometimes needing to take multiple breaks during a lesson. When she was first diagnosed and symptoms were bad, she was not performing much, and when she did perform, she sat. There were days when vocal exercises in lessons would trigger her symptoms.
Like having to suspend my breath for a really long time or breathe really fast. It would affect my blood pressure a little bit and I would get dizzy. Then also, anytime I experience brain fog, that would affect whatever I was working on at the time. Sometimes I just couldn’t focus.
Patricia has found success in self-regulating for singing with hums and very slow slides. “Not so slow that I run out of breath, but just sliding on thirds or something. I think it slows my heart rate down a little bit and calms my breathing. And it doesn’t require such intense focus that it gets in the way.” The cardiac rehabilitation has been the greatest success and she also finds the support of a therapist to be pivotal in her journey. “I think I was still kind of hesitant to accept certain limitations on my life.”
Her advice to singers navigating POTS is exposure to disability activism to gain more awareness of “what it’s like to live your life differently.”
I think it's really important for people to know that it is a debilitating condition for some, and it is an unpredictable condition for most. It's not something that somebody can easily get a handle on or manage. There are days or moments where it hits you out of nowhere. And people should reframe their ideas of what a normal functioning person looks like. Because the ways in which we operate our lives are all going to be different, and we shouldn't compare it to a set ‘normal.’ There is nothing wrong with somebody who needs to take breaks or needs days off to manage their symptoms. Accommodations are necessary and a human right.
