By Sherry Larson
People’s Defender
“We don’t know.” “Maybe it’s all in your head.” “Maybe you’re making this up and need to seek counseling.” “Maybe you’re looking for attention.” Maybe it’s non-painful migraines.” Amanda Griffin heard these statements during the five and a half years she was seeking answers about the peculiar symptoms she was experiencing.
Amanda explains, “I have POTS (Postural Orthostatic Tachycardia Syndrome). It’s a type of dysautonomia which means a dysfunction of the autonomic nervous system.” A summation from Wikipedia states, “The autonomic nervous system (ANS), formerly referred to as the vegetative nervous system, is a division of the peripheral nervous system that supplies internal organs, smooth muscle, and glands. The autonomic nervous system is a control system that acts largely unconsciously and regulates bodily functions, such as the heart rate, its force of contraction, digestion, respiratory rate, pupillary response, urination, and sexual arousal. This system is the primary mechanism in control of the fight-or-flight response.”
Amanda is 31 years old. At the age of 20, she worked a nursing home job and described herself as a “normal person.” On one short-staffed day at work, she ran around trying to clock out on time while getting her list of to-dos accomplished. She entered a patient’s room to take their blood pressure, and she was suddenly very dizzy. As Amanda exited the room, she bumped into several things. As folks noticed, they asked, “Are you okay?” Amanda replied, “I don’t think so.” She explained how she slid down the wall onto the floor. She lay in a room until her parents came to get her since she couldn’t drive home. She convinced them she didn’t need to go to the hospital and was still dizzy. Over the next few days, she needed help walking, her muscle weakness continued and she was tired and off balance.
At first, Amanda visited her primary doctor, who had no idea what was happening to her and sent her to specialists. The specialists were also clueless. She stated, “It took me five and a half years to get a diagnosis.” After much discouraging feedback and a lack of a diagnosis, Amanda took a break from doctors. She said, “I still had symptoms daily, but I wasn’t falling massively in decline. And then suddenly, I started getting more symptoms.” She acquired a new medical team that “believed” something was wrong. Although one neurologist told her it was all in her head and she needed counseling, her next neurologist took her seriously and referred her to another specialist. There, she had a tilt table test that solidified her diagnosis of POTS.
Amanda continued, “Autonomic is like automatic. You don’t usually think about breathing, and you often don’t think about digestion. You don’t think about your heart rate or making yourself warm or cold. Those are things your autonomic nervous system does. Some part of their autonomic nervous system is malfunctioning in people with dysautonomia.” The form of dysautonomia that Amanda has is POTS and is related to posture – specifically standing. She explained, “When our posture changes to standing, our body asks, ‘What are we supposed to do?’ When a typical person stands up, all the blood vessels in their legs and the lower part of their body tightens to shove the blood to their brain, so they don’t lose consciousness or feel lightheaded.” She continued to explain that in individuals with POTS their bodies, “forget how to squeeze blood vessels, or aren’t able to maintain the squeeze, so instead of our blood going up, our heart says, ‘I have to take over the job,’ and beats fast to try and get blood to our brain and the rest of our body.” About 1/3 of folks with POTS faint. Fortunately, Amanda does not have that issue, but sometimes her vision will go gray or black, and her heart rate always increases.
The Mayo Clinic lists the following primary symptoms of POTS: lightheadedness, fainting, rapid heartbeat (relieved by lying down), fatigue, inability to exercise, nausea, anxiety, and blurred vision.
Amanda explains that the heart rate change is the diagnostic criteria. And she shares that typically, “they get the whole package.” She discusses her struggles with brain fog, digestive problems, and shortness of breath. Amanda describes it as two parts of the autonomic nervous system – fight and flight, and rest and digest. Her body gets anxious over an everyday activity like standing up, just as a typical person might get nervous if they saw something scary approach. So, your rest and digestion don’t work while your fight or flight is in process, and a person with POTS can experience GI (gastrointestinal) issues.
Amanda describes her syndrome as “invisible.” “You can’t really see anything in me – I look healthy and normal.” Yet, inside me, there can be 20+ symptoms – some days are very manageable, and nobody else would notice. Other days we go through flares, and the symptoms are much worse.”
Amanda takes medications that help her symptoms. She explained there are no FDA-approved medications for POTS and said, “Basically, we take medication for symptom management. Some medications work for some and don’t work for others. We drink a ton of water and eat a lot of salt.” She explained that salt helps with the low blood pressure many POTS patients experience. She shared that many POTS patients always carry salty snacks or saltshakers. Other lifestyle helpers include compression socks, using a cane or additional walking assistance, and shower chairs.
“POTS is very much like a spectrum,” explained Amanda. “Some people’s symptoms are very, very mild. Some folks are bedridden. Some go to work and college and do normal things.” Amanda shared, “I’m thankful I’m not bad.” Although she cannot work or do “typical” 40-hour-a-week activities, Amanda still can drive. She tires quickly and must lie down frequently for recovery.
Amanda had visited at least 10 doctors in the five and a half years of searching for an answer. She discovered through her research that the average POTS patient sees seven doctors before finding an answer. She stated, “POTS is not rare. They estimate that there are one to three million Americans with POTS. Forty-eight percent must travel over 100 miles for doctors who understand.” She said, “I look back and think of all these doctors who didn’t give me an answer, and I don’t want to say they’re bad doctors. I think they do their job to the best of their knowledge. POTS is something that many doctors have never heard of – even now.” Many infections and diseases develop POTS. Amanda informed COVID is one of them. She concluded that all POTS patients remain a mystery to their doctors. “It’s so important that we raise awareness – there are so many people with POTS that need help.”
“I’ve found that I have developed more kindness and compassion towards others and jump less to conclusions. Because I now live a life that people could easily jump to conclusions,” Amanda shared. “It’s given me the ability to appreciate the little things – the people willing to back you up and stand by you. I have amazing parents who have done everything you could imagine for me.”
Amanda has an Etsy shop called Moreover Blessed. She sells items to raise and spread awareness about POTS and other chronic disorders and diseases. She said, “I’m looking for ways to bring joy to a difficult situation. God has been a great strength to me and reminds me, ‘My grace is sufficient for you – it’s made perfect in your weakness.’ He helps the hard days not be without hope.”
For more information and statistics on causes, symptoms, and treatment for POTS, visit standinguptopots.org or dysautonomiainternational.org/POTS.
