Melanie’s Story

Melanie (excerpt from Stryker, 2024)

I think for me, [singing] is really more the community and the friendships that have come along with it. I know sitting down and singing is fun or singing in the car is fun, but I really enjoy the people.

Melanie is a choral singer and voice-specialized speech-language pathologist. She uses her voice every day for vocal exercises, singing and talking with patients. Growing up, she sang in choirs and performed in musicals through high school. She shared her inspiration to become a speech-language pathologist (SLP).

My older brother has autism. I always thought it would be cool to be a speech therapist that could help young adults transition into adulthood and the social, professional, and other challenges that come with that.

When she was 17, she was diagnosed with muscle tension dysphonia and found herself further inspired to be a SLP who specializes in voice. With the encouragement of her high school music teacher, she went into college as a double major in speech-language pathology and music.

Throughout college, I also sang in various choirs and ensembles, took voice lessons all four years, even served as a conducting intern and helped start a men’s a cappella group on campus.

She found it difficult to continue her involvement with choirs in graduate school, but once she settled into her current position, she found a women’s non-auditioned choir and continues to sing with them, rehearsing once or twice a week.

In the summer of 2023, she was working with a patient when she noticed that her heart rhythm was strange.

Thankfully I had just gotten a new Apple Watch with the ECG feature, so I was able to capture it and send it to my stepsister who is a nurse, and my fiancé’s stepmom who was a nurse practitioner.

She thought about a few reasons why this could be happening: she had just had coffee, empathy for the patient’s own anxiety, etc. Her stepsister advised her to limit her caffeine, but she was only drinking five cups a week already. She reached out to her primary care physician, a nurse practitioner who had also worked in cardiology. They did blood work, looked at her thyroid and iron levels, and everything came back normal. Her primary care physician (PCP) decided to put her on blood pressure medication at a low dose.

It made me so stinking dizzy. I was on it for two weeks, and I was like “no, I can’t be sitting in front of patients, ready to keel over.

Returning to her PCP, she was put on a heart monitor, and with the increased awareness of what her heart was doing, she noticed that her “heart was pounding out of her chest!” She started noticing high heart rates while driving or showering, and all the while “feeling super crummy as well.” Her symptoms reminded her of one of her patients with POTS, so she started looking into it. Feeling sure that this was what was going on, she was surprised when her PCP said the results from the heart monitor “came back great!”

I messaged her back and was like, “so things haven’t gotten any better. Things are actually worse. This is what I’m experiencing. Is POTS on your differential diagnosis?”

And she had to “beg” for a referral to cardiology.

I was kind of gaslit by my PCP, who used to work in cardiology. So, I actually don’t know if I want to stick with her, because if anybody should be gaslighting me, it shouldn’t be you!

Upon seeing the cardiologist, she explained her symptoms and that she believed it could be POTS. He agreed and made an appointment for a tilt table test with a POTS cardiologist.

I went to my tilt table super flared up because I had to run there. I was going to hop on a shuttle to get to the main hospital, but the bus drove off without me. I was running after it, so when I got there, my heart was like 190. I almost passed out in the waiting room. We did the tilt table test, and the nurses were like “You gave us really great information!” They told me during the test that I had self-diagnosed, and I was like “Thank you! Hallelujah!”

She was put on medication and her heart rate levels dropped immediately. She was even able to run again. She has noticed that her heart palpitations have gotten worse, but feels her symptoms have “65% improved.”

You know, I will say, what has shifted for me [since the onset of POTS symptoms] is when I get home from work, I’m so much more tired and it’s hard to get me to go to choir.

She revealed her concerns about not knowing when she is going to have a flare in choir rehearsals, and shared that when she leaves to use the restroom, she is sure to let someone know to check on her if she is gone too long. She has disclosed her diagnosis to her choir director who supported her, saying she could “do whatever she needs to do.” The choir she sings in is “diverse and very accepting of tons of different people. So, it has not been a big deal at all to be able to sit for concerts and rehearsals.” But she shared that her level of participation has changed since her onset of symptoms.

There are lots of opportunities for solos and there are a couple of songs this coming season that would have been really fun to audition for. But I don’t know when I’m gonna flare - which makes my heart palpitate, I feel air hungry, dizzy, and super tired. Having to bring a stool up with me for a solo would be a pain and draw more attention to me than I already have. Things like that have been barriers to fully participating in the group, which has been kind of a bummer. But the last thing I need is to go up there, also nervous, not feeling great, and then have a solo in front of the whole choir and not feel like I can do it the best that I could if I felt fine.

She shared the challenges of navigating her symptoms in a professional setting, in her case a voice clinic. “The constant up and down” of going to get patients and bringing them back to the therapy room makes in-person therapy difficult. She has been masking to avoid COVID, which also means she is not drinking as much water as she should. In order to make her work more manageable, she has been able to work from home and do virtual appointments with her clients.

I have a really nice setup and more flexibility. When I’m at home, on my lunch hour, I could go take a nap or lay down in between patients.

She has found support with her team at the voice clinic and interactions with the dysautonomia communities on social media. In her work as an SLP, she has found herself especially interested in working with patients who are experiencing exercise-induced laryngeal obstruction, also called paradoxical vocal fold motion and vocal cord dysfunction. She has been exploring some of the breathing techniques from her work with those patients to see if they help with her POTS symptoms. In her exploration, she noticed that she could slow her heart rate by practicing extended exhales, lip trills, or semi-occluded vocal tract exercises.