Unusual POTS symptoms (or are they?)

Insert weird symptom here: "_. Is that a POTS thing?"

This is one of the most common questions in online support groups, and some of the symptoms are pretty odd. We thought we could use the POTS Patient-Powered Survey to help shed light on these.

We're not talking about the common symptoms. Last week we released this finding about frequency of those. Here we're looking at the symptoms participants wrote in the "other" category, when they were invited to write in any additional symptoms about which we had failed to ask. Sixty-one patients did so, and below are their many write-in answers.

Unspecific pain, 2 Sensation of pressure in body, 1 Sharp prickly pain all upper body, 1 Numbness and tingling in extremities, 2 Pins and needles feeling in back, 1 Small fiber neuropathy, 1 Poor sensation in hands, 1 Always dropping things, 2 Restless legs, 1 Exercise intolerance, 2 Excessive sweating, 4 No sweating, 2 Medication hypersensitivity, 1 Dry eyes, 1 Hair loss, 2 Excessive urination, 1 Gastroparesis or delayed gastric emptying, 5 Extreme stomach bloating, 3 Acid reflux, 1 Dry heaving or vomiting, 2 Rapid weight gain, 1 Night sweats, 1 Cold sweaty hands and feet, 1 Temperature intolerance, 12 Vertigo, 4 Pupil dilation, 1 Migraine or headache, 5 Pressure in head, 2 Clogged feeling in ears, 1 Swooshing noise in ears, 1 Allergies or hives or rash, 3 Alcohol intolerance, 1 Seizures, 5 Eyes rolling back, 1 Eye pain, 3 Visual disturbances, 5 Numbness in face and body, 2 Unable to speak, 1 Difficulty finding words, 3 Sound sensitivity, 6 Light sensitivity, 9 Touch sensitivity, 4 Insomnia or unrefreshed sleep, 2 Sleep apnea, 1 Vivid bad dreams, 1 Irritability, 1 Depression, 3 Sudden mood fluctuations, 2 Unfounded anxiety feeling, 10 Inattentiveness or cognitive problems , 4 Short term memory loss, 1 Full body itch, 2 Feeling of something stuck in throat, 2 Low blood pressure, 4 Muscle weakness, 5 Balance issues, 3 Stuck in slow motion, 1 Temporarily paralyzed, 1 Body vibrating or shaking or pulsating, 3 POTS symptoms triggered by pressing on upper stomach area, 1 Dry mouth, 1 Bloody noses, 1 Easy bruising, 1 Skin color changes, 1 Low grade fever, 1 Hands swelling, 2 Blood pooling, 5 Air-hunger, 1 Too many to list, 2

As you can see, there are loads of symptoms that POTS patients report, in addition to the "normal" ones. I know I felt better once I found out that I wasn't alone in this. I have also found it helpful in the past to see how other patients describe certain symptoms that I had trouble describing. "Air-hunger", for example, is a feeling I can relate to, but never knew how to describe until I read it. My hope is that by printing this list, it helps other patients better describe symptoms to their doctors.

Because POTS is a syndrome associated with many other conditions (e.g., EDS, mast cell disorder, Lyme disease, etc.), it's hard to separate the POTS symptoms from those caused by other things. Our finding last week - that 47% of patients reported they'd had iron deficiency anemia - makes me wonder if some symptoms stem from that also. At any rate, what is very clear is that POTS patients tend to experience many different symptoms.

Also, I suspect that not all patients wrote in all of their symptoms. I know I found myself reading this list and several times saying "oh yeah, I forgot about that one." Two patients wrote in "too many to list." If more people take the survey, we can start flushing out which less-recognized symptoms seem to be prevalent among POTS patients.

We have lots more findings here, or to receive occasional email updates on new findings, you can sign up on our homepage. Be well!