Last month, a reader shared the story of her lifelong journey to find a diagnosis for her persistent fainting spells. While she’d found strategies to manage her condition, she didn’t have a name for it until she read the article “When Standing Is Unbearable” in the November 2021 issue of Bottom Line Health. Here, she shares the story of a life with undiagnosed postural orthostatic hypotension syndrome (POTS).

Letter to the editor

“Since I was five years old and had my first fainting experience at the beach club where I was learning to swim, I have struggled with the symptoms described in your recent article. I am now approaching age 80.

“As a youngster, I thought everyone felt this way. As I grew, I realized my symptoms, which I did not see as symptoms then, continued into young adulthood. My doctor, an excellent diagnostician, thought it was anxiety, and, thankfully, I received medication that helped some—but not completely.

“My career in health care brought me to the realization that I had something that was physical in addition to the anxiety it caused me. Every day of my life, I have fought through the symptoms, frustrated by my lack of knowledge.

“Once, it caused me to lose consciousness and fall while riding horses with my husband. I ultimately had broken ribs and punctured lungs. This was my most dramatic occurrence from POTS, but the daily fighting of the pre-faint feeling and the anxiety of scheduling anything or getting through a day at work plagued me continually.

“I talked about it very little and kind of stuffed it down because I couldn’t explain it to anyone. At times, it really embarrassed me.

“After reading this article, which was so right on in terms of my life experience, my emotions exploded with joy at having a name to what I have, sadness for all the ways it had affected the living of my life, and gratitude to your publication for writing about the diagnosis.

“Interestingly, over the years, I found many of the recommendations given for dealing with it on my own, but now I can bring this to my current doctor at my next routine appointment. Thank you!”

The problem of misdiagnosis

This reader is far from alone. Most people will experience at least one missed diagnosis or diagnostic error at some point, David E. Newman-Toker, MD, president of the Society to Improve Diagnosis in Medicine, told Bottom Line Health. Women and minorities are misdiagnosed most often.

Misdiagnosis can lead to needless suffering, untreated diseases, serious harm, or death. In addition, many misdiagnosed patients have been told that the problem is all in their heads.

Protect yourself

To help reduce the risk of misdiagnosis, Dr. Newman-Toker recommends taking the following steps:

  1. Make a list. Before your appointment, put together a one-page, easy-to-read list of your symptoms and the timeline during which they occurred. Instead of the doctor spending time finding out about your symptoms, he or she can spend that time thinking about what caused your problem. It also helps you avoid talking about what previous doctors have said, which may affect your physician’s views.
  2. Ask: “What is the worst problem this could be and why is it not that?” This simple question guides the doctor to give you a detailed explanation about what he or she thinks is going on and to provide specific information. For instance, if your major symptom is dizziness, you’re hoping to hear something like: “I suspect vestibular neuritis, an inflammation of a nerve in your ear, which causes dizziness. The problem I’m most worried about is stroke, but there is substantial evidence that my findings in this exam confirm your problem is vestibular neuritis.” This shows that the doctor is thinking clearly and systematically about the problem and can articulate the rationale for the diagnosis. It also shows that he or she is thinking about making sure you don’t get harmed by a diagnostic error. If the doctor instead says something like, “You don’t need to worry about that,” or “I see a lot of this, and it is very common,” you should immediately find another doctor or at least get a second opinion.
  3. Don’t give up. During your visit, your doctor will give you a treatment plan. When it doesn’t work, patients tend to think they have received the wrong treatment. But you might have the wrong diagnosis instead. If you’re not getting better, keep the possibility of a diagnostic error on the physician’s radar by giving the office a call.

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