9 Lesser-Known Symptoms of POTS People Experience
Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.
Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia, or dysfunction of the autonomic nervous system. When people talk about POTS, a few key symptoms are usually the focus: increase in heart rate upon standing, lightheadedness, exercise intolerance, and difficulty regulating body temperature. But because the autonomic nervous system controls so many areas of the body, there are many other symptoms that can be attributed to POTS. Not every person with POTS experiences the exact same symptoms, and even your doctor may not warn you about potential symptoms. So it’s entirely possible for you to not realize that one “weird” thing you feel is actually related to your POTS.
We wanted to bring some attention to the lesser-known symptoms of POTS, so we asked our Mighty community to share the symptoms they experience that aren’t talked about as much. If you experience any of of these symptoms, remember to consult your doctor to confirm that POTS is the cause, not another condition. Share any other “lesser-known” symptoms in the comments below.
1. Adrenaline Surge
People with hyperadrenergic POTS have an overactive sympathetic nervous system, the system that operates the “flight or fight” response. When it comes to POTS, this can lead to a surge of adrenaline at unexpected times.
“Random adrenaline surges. They come with the hyperactive sympathetic nervous system seen in POTS. The worst is when they happen at night. Besides the anxiety feeling keeping you up, when you do sleep you can get constant bouts of tachycardia, sweating, and microarousals which make getting sustained deep sleep nearly impossible no matter how long you’ve ‘slept.’ I’ve thankfully found meds which help prevent all that, but it took a couple sleep docs, an outstanding cardio, and a ton of personal research to even identify that it was happening.” — Sam S.
Download the Mighty app to ask questions and give support to other members of our POTS community.
2. “Coat Hanger” Pain
Named because the location of pain imitates the shape of a coat hanger, “coat hanger” pain is found in the upper shoulders, back and neck, and worsens in an upright position. Some research indicates it is caused by poor blood flow to the muscles of the upper back and neck.
“Coat hanger pain is something I deal with often the more I’m upright, and I didn’t know it was a symptom of POTS until recently. For me it’s an aching pain at the base of my skull spreading out into my shoulder blades and upper back.” — Katie E.
3. Sensory Overload
People with dysautonomia may have difficulty sorting through the signals received by sensory and autonomic nerves, so they may get overwhelmed by stimuli easier than others.
“Because of an overactive sympathetic system: easy sensory overload. I’m sensitive to anything that can overload my body and push it farther into a ‘fight or flight’ response. To avoid major flare I need to avoid crowds, flashing lights, concerts, theme parks, roller coasters, fireworks, big screen movies, surround sound, action movies, the list goes on.” — Sam S.
4. Feeling “Drunk”
Symptoms like dizziness, lightheadedness, exhaustion, blurred vision and shakiness can all feel like being drunk, even if you haven’t had a drop of alcohol.
“Feeling like you’re blackout drunk at the most random times.” — Abby T.
5. Bladder Dysfunction
The autonomic nervous system helps regulate the bladder, so people with POTS may experience difficulties with urinary incontinence.
“Urinary issues such as chronic UTIs and not being able to empty your bladder so you have to keep going back to the bathroom several times every hour!” — Gabrielle E.
6. Chronic Pain
Chronic body pain may not be immediately thought to be associated with POTS, but having poor circulation, blood pooling and coldness in extremities can all be very painful.
“The pain. Today my legs hurt so badly that I’m hanging out under my heated blanket. The circulation in them are horrible because I was standing for too long.” — Alexis P.
Your feet or legs may turn reddish-purple when you stand due to blood pooling or poor circulation. And one study of 39 POTS patients found that 77 percent experienced facial flushing, possibly due to an increase in circulating hormones produced by the adrenal glands.
“The one side of my face turning red or one foot turning red. Or the drunk feeling.” — Yesenia R.
8. Gastrointestinal Issues
The autonomic nervous system regulates digestion, so POTS can cause diarrhea, constipation and bloating, and some people with POTS have gastroparesis. In addition, eating a large meal causes more blood to be redirected to the digestion process, leading to an increase in POTS symptoms.
“Nausea and acid reflux!” — Jordan P.
“Eating exacerbating my symptoms! Especially when I eat a large meal my symptoms usually act up more. I try to eat smaller meals but it’s very frustrating trying to enjoy a nice big dinner and dessert and then paying for it in the form of POTS symptoms!” — Nicole C.
9. Difficulty Swallowing
“Difficulty swallowing. Chronic pain. Sensory overload. Adrenaline surges. Feeling drunk.” — Kira P.
“Dry mouth that feels like sandpaper sticking. Swallowing difficulty at random times that freaks me out because my throat muscles seemingly are not getting the connection from my brain to work. Very creepy not being able to control throat and breathing.” — Bet D.