POTS and Small Fiber Neuropathy: An Athlete's Case in 3D
Ben is 21, a college athlete. It started with nearly passing out while driving. Within a year he had chest pain, palpitations, shortness of breath, twitching muscles, and cold purple hands and feet, and he'd lost 20 pounds. He had to stop school and sports, and he couldn't walk into a grocery store.
What Ben was told: POTS
Ben gets a POTS diagnosis from a cardiologist. His echo, stress test, and heart monitor all come back clear, which is good news about his heart. After 2 ER visits and cardiologists, neurologists, rheumatologists, and psychiatrists, nobody can move the needle.
What we found
A small-fiber neuropathy. The nerves that steer blood through his vessels have gone quiet, so blood pools in his legs and hands when he stands, and in his head when he lies down.
The small nerves that steer his blood have gone quiet
Ben has a small-fiber neuropathy, which isn't normal for a fit 21-year-old without diabetes. Those fibers carry pain and temperature, and they're built like the nerves that tighten blood vessels. When the brain gets less feeling back from an area, it controls the blood flow there less precisely. So his blood pools, his heart races to compensate, and his CO2 runs low. The fix starts with getting those nerves talking again.
How we got Ben better (Intensive days in the clinic, then a home program)
Ben's plan went after his quiet nerves. If his brain can feel his body again, it can steer his blood again. We worked him hard, day after day.
- Neuro20 suit (During active therapy). First, the Neuro20 suit. It's like a wetsuit lined with electrode pads. It stimulates his muscles and the nerves beneath them while he does active therapy.
- Peripheral nerve stimulation (Region by region, then nerve by nerve). Second, peripheral nerve stimulation, first across whole regions of his body, then along each individual nerve.
- Lying down first (Then up toward sitting). We started all of it lying down, where his brain had the best blood flow, and worked him up toward sitting.
- Easy exercise, watched by end-tidal CO2 (Kept in a tight CO2 range). Then light exercise lying down, guided by the carbon dioxide at the end of every breath, his end-tidal CO2, instead of his heart rate. Keeping it in a tight range trains his blood vessels to respond to carbon dioxide again.
Ben, after his days with us
- Pinprick, vibration, and temperature back in his legs and hands
- The purple, pooled color gone from his shins
- Working on driving again
2 months later, he wrote to us. He still had some eye floaters, a pulsing in his back at night, and weight to put back on, and we're working through those together. He'd kept up his exercises, and he was riding an upright bike, lifting light weights, getting ready to start fall semester in person, and coaching a team at his old baseball facility.
Watch the case video
