Discovering That I Have POTS
“In retrospect, I believe I have had POTS since 2010,” shared Sandra Fischler, a follower of our Facebook page.
But like many with Postural Orthostatic Tachycardia Syndrome, or POTS, Fischler didn’t receive an official diagnosis until many years later – 2016. And it was after a long and frustrating road dealing with worsening symptoms and a lack of a diagnosis.
POTS itself is a cluster of symptoms frequently occurring together – hence why it is referred to as a syndrome rather than a disease. It is one form of dysautonomia, a broad term used to describe several different medical conditions that cause a malfunction of the autonomic nervous system (ANS). It is such an umbrella term because the ANS controls many functions of the body that we do not consciously think about and occur “automatically”, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. When a person has dysautonomia, their bodies struggle to regulate these automatic functions. Common problems that result include lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition and in severe cases, death.
Figuring out the causes of the symptoms is challenging, as the cause is not the same for each POTS patient. This is one of the reasons Fischler’s diagnosis took so long. Fischler said that in 2010, she had several instances in which her heart beat so fast that she couldn’t count that quick. Fischler is a nurse – and when she used her stethoscope to listen, her heart beat was greater than 225 beats per minute.
“I just couldn’t keep up with the speed of my heart. I decided to see a cardiologist, and when he performed a stress test, my heart rate climbed to 140-160 rapidly. He remarked that I was hitting my target heart rate very quickly, but unfortunately, that cardiologist didn’t put two and two together,” shared Fischler.
Although POTS has the characteristic of tachycardia as the main issue, the part of POTS that bothered Fischler most was the hyperhidrosis she experienced. Hyperhidrosis is excessive sweating – which also falls under the ANS’s control. Fischler knew she had always sweated more than her husband but didn’t have significant issues with it until her 40s. At that time, she encountered some other health issues and had chalked the hyperhidrosis up to hormonal changes. By the time she was entering her late 40s, she had collected several diagnoses…but still felt there was something bigger, something underlying that was not being discovered.
With an eventual diagnosis of Ehler’s-Danlos Sydromes, Fischler’s geneticist still had concerns about her excess sweating – and referred her to a neurologist who specialized in dysautonomia. From her research, Fischler had learned that at least 85% of EDS patients have some kind of dysautonomia. While the neurologist ignored her concerns, she eventually found a cardiologist that did not.
“In the year leading up to my diagnosis, I had started to look at my heart rate and realized that while my resting heart rate was 60-70 beats per minute, as soon as I stood up or started moving, it would jump up greater than 30 beats per minute. I made a log of date, time, activity and position, bp’s, hr’s, sweating amount, feeling of dizziness, brain fog and how I felt. In December 2016, I was finally officially diagnosed with POTS after having a TILT table test performed and seeing one of the few doctors who could diagnose dysautonomia in Southern California.”
A tilt table test is the gold standard of POTS diagnosis. The tilt table measures your heart rate and blood pressure as you change posture and position.
After being put on a beta blocker, Metroprolol Succinate ER, Fischler was able to be active for longer periods of time without hitting the point of feeling ill. Her friends noticed that she could take a walk on a cooler day without taking out her bandana to mop up my sweat or taking out a mini handheld fan to cool off. She was able to eat some meals without using her fan at all.
“I eventually got an iWatch and with the application called HeartWatch, I was able to keep a closer eye on my heart rate and review the day or different time periods at the end of the day,” Fischler explained.
“I was actually stunned at how much my heart rate fluctuated. I really was not aware of it, as my heart rate was always checked when I was sitting down. Not so at my cardiologist’s office. The cardiologist who diagnosed my POTS did the vital signs 5-10 minutes after laying down quietly after arrival, then again sitting up, then again standing up immediately and finally standing after five minutes. By doing so, he could see the Postural effects on the heart rate directly – something other physicians had never done!”
Today, Fischler still has heart rate fluctuations but less of them. Her episodes of tachycardia do not last long. She still struggles with humidity and bright sun, as they make her less tolerant to mental or physical activity. Having other chronic conditions makes it tough to isolate one of her problems and study it directly.
“I wear compression socks when anticipating a lot of activity for the day. I stay well-hydrated and added an electrolyte replacement beverage on especially hot or stressful days,” she said. “I’ve also learned to pace myself and say ‘no’ when necessary. I still feel better laying down and have to be horizontal for a good part of the day due to severe back and neck pain from other chronic conditions. Gravity is the enemy for my EDS and POTS, for sure.”
Fischler wants to create more awareness for POTS and help others get to an accurate diagnosis – one of the reasons she was willing to share her personal story. She also knows that often POTS is just one of many chronic conditions a person has. For this reason, it is tough to get an accurate diagnosis. She is grateful for her nursing background, which she believes gave her an advantage in understanding how the body systems work.
“And I know I am not completely crazy – because that is how one feels when so many body parts misbehave at the same time,” Fischler said. “And I absolutely could not have gotten through this without the support of my husband. Particularly in the world of chronic illness, having someone who believes you, encourages you and is patient with the quest for diagnosis is so important.”
WATCH: Check out this video that provides a thorough explanation for POTS and share it with someone who could benefit from the information.https://web.archive.org/web/20201129162434if_/https://player.vimeo.com/video/187404694?app_id=122963
Resources:
http://dysautonomiainternational.com/
https://www.dysautonomiasupport.org/
https://www.ehlers-danlos.com
PainPathways Magazine
PainPathways is the first, only and ultimate pain magazine. First published in spring 2008, PainPathways is the culmination of the vision of Richard L. Rauck, MD, to provide a shared resource for people living with and caring for others in pain. This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally.
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