Your feet or legs may turn reddish-purple when you stand due to blood pooling or poor circulation. Chronic PainĬhronic 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. “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. The autonomic nervous system helps regulate the bladder, so people with POTS may experience difficulties with urinary incontinence. “Feeling like you’re blackout drunk at the most random times.” - Abby T. 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. 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. I’m sensitive to anything that can overload my body and push it farther into a ‘fight or flight’ response. “Because of an overactive sympathetic system: easy 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. Some research indicates it is caused by poor blood flow to the muscles of the upper back and neck. 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. 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.ĭownload the Mighty app to ask questions and give support to other members of our POTS community. They come with the hyperactive sympathetic nervous system seen in POTS. When it comes to POTS, this can lead to a surge of adrenaline at unexpected times. People with hyperadrenergic POTS have an overactive sympathetic nervous system, the system that operates the “flight or fight” response.
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