A shortcoming of past POTS symptom surveys is that they haven't asked about frequency of symptoms. They typically asked whether each symptom was "frequent" or was experienced in the past month.
The problem is that many, if not MOST normal people experience many, if not MOST of these symptoms at least sometimes, and everybody has a different idea of what constitutes "frequent." Headaches, chest tightness, lightheadedness, nausea, sleep or gastrointestinal disturbance...that's all expected on occasion when you have a human body. So what's special about POTS? Is it the number or severity or frequency of symptoms? Or are POTS patients just making a big deal about the very same symptoms that other people take in stride?
To start addressing this question, we used the POTS Patient-Powered Survey to ask how often POTS patients experience typical symptoms.
422 POTS patients were given a list of symptoms and asked whether they had experienced each in the past month. If they answered "yes", they were then asked how often. Choices were "a few times per month", "a few times per week", "almost daily" and "almost constantly." Here are the results:
Brain fog, lightheadedness, extreme fatigue, stomachache, nausea and palpitations stood out as the most common symptoms, with at least 90% of patients reporting these symptoms in the past month.
The results suggest that most patients experience many symptoms quite often. I'll look for some data on how often normal healthy people experience many of these symptoms, but I'd bet my hat that POTS patients experience them muuuuch more often. With so many different symptoms involved, and many experienced so frequently, it starts to explain why some POTS patients so rarely get "a good day."
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