Suffering from POTS no more
In today’s post from migrainefreeliving.org, a patient volunteered their testimonial and experience dealing with Postural Orthostatic Tachycardia Syndrome (POTS), a controversial condition that is often overdiagnosed and poorly understood. We found their journey enlightening and think it may help others find their way. Enjoy!
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Living with postural orthostatic tachycardia syndrome, or POTS, often felt like being trapped in a medical mystery novel—except I was the patient, not the detective. My symptoms started as a jumble of heart palpitations, dizziness, crushing fatigue, and an on-again, off-again brain fog that made work and daily chores almost impossible. At times it felt like anxiety, sometimes like the flu, and I wondered if anyone would ever take my strange set of complaints seriously. But my wonder was more than just a curiosity. It was a painful quest for answers and sustainable relief.
The Maze of Misunderstood Symptoms
For years, I bounced between specialists. Some said it was stress; others thought it might be depression or just a phase. I quickly learned that my symptoms—lightheadedness, racing heart, nausea, and headaches—were so similar to anxiety or IBS that even seasoned doctors struggled to see the real pattern. The worst part wasn’t just the dizziness or the exhaustion; it was the lingering fear that “the experts” I sought out believed my challenges were not real.
Finding the Right Physician: An Uphill Battle
After countless appointments and more than one eye roll from busy physicians, I started to doubt myself. It took visits to several different clinics, and more than four long years, before someone finally connected the dots and said the word “POTS.” Lack of awareness among healthcare providers meant waiting for months for a tilt-table test and advocating hard for myself at every step. Hearing a real diagnosis was both validating and terrifying—it meant a new journey was just beginning.
I also found reassurance and confidence in POTS support groups. To my surprise, my doctors did NOT discourage me seeking out validation (or support) in these groups. He often asked me what others have tried and what has worked in the broader community. (I will acknowledge that while that doctor encouraged me to participate in POTS support groups, he cautioned this. Certainly many patients may suffer from chronic illness, but there are a large number of people with self-diagnosed POTS, and it is critical to be diagnosed by a licensed physician so that appropriate and individualized treatment can be recommended. That made sense to me) In one online group, I met plenty of folks who found no relief with conventional and prescription treatments. But I also felt uplifted considering that many people don’t spend time in these support groups because their symptoms have improved. They show up here to express their frustration and to seek out sympathy from others. There are thousands of people out there with POTS who have found relief, and I knew I would get there one day.
Exploring Treatments: Trial and Error
With a diagnosis, I hoped for a “cure,” but managing POTS isn’t so simple. The first steps were non-drug strategies: drinking extra water, eating more salt, and wearing compression stockings. Some days, even gradual standing up was a challenge. Exercise was recommended, but upright activities would leave me reeling—so I started slow, using a recumbent bike and gentle swimming, gradually increasing intensity as tolerated. Improvements didn’t happen overnight, but over weeks my stamina began to slowly climb.
Medication: Weighing the Pros and Cons
As symptoms persisted, my physician suggested trying medications like beta-blockers and fludrocortisone. These were hit-or-miss: beta-blockers helped with tachycardia, while fludrocortisone sometimes left me bloated. Midodrine made standing easier but came with tingling scalp sensations. Ultimately, a combination tailored to my body, monitored by a knowledgeable provider, was most effective. Clinical evidence for medications is still limited, and responses are very individual, but studies support these options for selected patients.
The Breakthrough: What Helped Most
Looking back, what improved my symptoms the most wasn’t magic or a miracle drug—it was sticking to a structured exercise program and saline infusions during rough stretches. Clinical research shows that horizontal or recumbent aerobic exercise helps retrain the nervous system and improve quality of life for many with POTS. Clinical trials and studies my doctor shared with me supports salt and fluids as a mainstay, while medications are useful for specific symptoms. But prescriptions don’t work for everyone. Patience and persistence, plus a supportive care team, have been key.
Hope and Advocacy for the Journey
If I could send one message to others with mysterious symptoms like mine, it’s this: don’t give up on yourself. POTS can wear many masks and make even the strongest person question reality, but answers and help exist. Finding the right doctor and trying a tailored mix of therapies—rooted in both clinical evidence and real-world experience—can bring progress. Advocacy isn’t just for diagnosis; it’s a lifelong skill for thriving with POTS.