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19 Signs You Have POTS, Not 'Just' Anxiety

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Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia, or a malfunction of the autonomic nervous system. The autonomic nervous system controls systems like heart rate, blood pressure, digestion, and temperature control, so people with dysautonomia may experience abnormal changes in blood pressure and heart rate, gastrointestinal issues, lightheadedness, fatigue, chest pain, shaking and coldness. POTS specifically is characterized by an excessively high heart rate upon standing, plus the other symptoms of dysautonomia.

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Although POTS is not uncommon, some doctors are still unfamiliar with its causes and symptoms, and to make matters more confusing, POTS symptoms can appear similar to anxiety to an untrained eye. A racing heart, chest pain, sweating and difficulty concentrating could indicate a person is experiencing anxiety — but these symptoms also overlap with POTS, though autonomic dysfunction is not caused by anxiety. Many POTS patients are misdiagnosed with anxiety before (or even after) receiving their POTS diagnosis.

Of course, anxiety is a serious diagnosis in itself, and if you do have anxiety, you deserve to have support and the appropriate care. But if you don’t have anxiety, or you have symptoms that overlap with anxiety but have a different cause, it’s important to distinguish between the two so you can receive the right diagnosis and treatment. We asked our Mighty community to share signs they experienced that indicate their symptoms are due to POTS, not anxiety. Let us know in the comments if you have any more to add.

Here’s what our community told us:

1. “A new one I learned this month that my specialist explained to me — bright right red and purple bottoms of my feet! I found out it’s due to poor circulation (from POTS). My blood pools at the bottom of my feet. My blood pressure is so low that my body can’t push all the blood back up my legs.” — Jade W.

2. “If your rapid heart rate, chest pain, and/or sense of discomfort worsen when you’re upright, but slowly subside when you’re reclined, this is a big hint it may be POTS instead of anxiety.” — Alia G.

3. “My last hospital visit the doctor thought I had a heart attack or aortic dissection, aneurysm or embolism. I went in with all the typical POTS symptoms (didn’t know I had POTS or Ehlers-Danlos syndrome [EDS] then). POTS episode is pretty easy to tell from anxiety/panic though. There’s little to no psychological anxiety, panic or worry. You just feel out of it and very sick. It’s all physical. And confusion, light-headedness and brain fog are not psychology. They’re cardiovascular and neurological.” — Bob S.

4. “Eating bigger meals makes you feel worse. Apparently your digestive system diverts blood to your stomach which of course worsens the symptoms. I’ve learned to eat small portions and often rather than have meals or eat on the sofa if I’m particularly bad with my feet up.” — Marie S.

5. “Standing up causes pressure to build in my head like it’s going to explode and actually passing out. Or when your feet and hands turn bright red then purple from the blood pooling.” — Anna C.

6. “My hands are always red and doctors and nurses always commented on it. I’d just say that they’ve been red since I was a teen. I just got diagnosed with POTS last week and my doctor looked at my hands and nodded.” — Shayla F.

7. “When I stand up and my vision goes black. My blood pressure rises so much I can hear my heart racing and my ears ring.” — Casey W.

8. “There’s some overlap in symptoms (shortness of breath/air hunger, heart racing, sweating, etc…), but I can tell they are due to POTS because grounding exercises don’t help at all and the symptoms are related to postural changes (i.e. it’ll get worse if I sit or stand up which isn’t the case for anxiety).” — Kelliann G.

9. “Sweating, rapid heart rate, dizziness, lightheadedness, nausea, shortness of breath, extreme fatigue. I do not have feelings of fear, even when I startle easy. I have never had a panic attack, had feelings of overwhelming fear or worry when this happens. All I did was stand up.” — Sarah C.

10. “When my blood pressure drops, my body sends some wacky chemicals into my body to keep the oxygen and blood to my brain. So I may appear uneasy and restless, but I’m merely accepting that my body is trying to compensate and keep me from passing out.” — Jo C.

11. “When my body swells up, and I can’t take a warm shower because it will raise my body temp to the point of passing out.” — Jamie L.

12. “There are times when my body involuntarily shakes. I am sitting there having a calm conversation with someone and my body and voice starts shaking. It’s completely weird and random. For a long time people just thought I was having a panic attack. Now we know it’s my dysautonamia.” — Samantha S.

13. “I was once wearing a heart monitor during an arrhythmia. I was sitting there watching ‘Supernatural,’ when suddenly I felt extremely ‘anxious.’ The show wasn’t that scary and my day went well. A few moments later I was called by the monitor call center to ask me a few questions… turns out it was a spontaneous arrhythmia. On paper it looked like I was running or in duress.” — Tab M.

14. “When I’m on vacation or reading a book or relaxing and I still get racing heart rates, dizziness, spotted vision, nausea, and constant headaches.” — Michelle A.

15. “I had an episode during class once – I was sitting still and listening to a lecture and taking notes, with a very clear mind, when the episode started. I was able to excuse myself from the classroom and go ask for help before it got severe enough to where I was unable to stand. Had it been anxiety, I would have been panicky and would not have been able to think straight. My anxiety attacks and POTS attack are hugely different, but mostly just the psychological symptoms, which is why they’re always diagnosed as ‘anxiety’ in the ER.” — Kaylee H.

16. “Overwhelming unease. But it’s not due to panic or anxiety. It’s due to my heart rate being high today, resting at 101 sitting in the car, and causing a feeling of unease and a headache.” — Saylor A.

17. “I literally cannot stand up through a shower. Sometimes I can’t even stand up long enough to brush my teeth or wash my face. I feel like I have lead weights strapped to my lower legs and arms, dragging me into the ground.” — Gwendolyn R.

18. “My symptoms all but disappear when I lay down… I was told when I was diagnosed (after being told by a different doctor it was anxiety) that anxiety doesn’t do that… which I knew.” — Ally J.

19. “I often turn down invitations to fun outings with friends and family. A lot of people think this is social anxiety, but this is actually me being aware of my physical limitations, although I still appreciate their offers.” — Brittany N.

Originally published: September 5, 2018
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