2 Years of POTS: What Her Tilt Tests Missed, in 3D
Claire got sick at 19, away at college. 2 years later she's living back in her childhood bedroom with headaches, lightheadedness, severe brain fog, and fatigue that gets worse with any activity. She can't drive, go to school, or go out with friends.
What Claire was told: POTS
For 2 years, Claire hears the same answer: POTS, a heart rate problem. Cardiology, her family doctor, and neurology all look at her heart rate, and she tries a lot of medications. Her tilt test watched her heart. It didn't watch her brain.
What we found
Upright, the left side of her brain loses about a third of its blood flow. Her eye tracking and her sense of touch fail along with it, and they recover when she lies down.
Her racing heart is covering for her brain
Upright, the left side of Claire's brain loses about a third of its blood flow. Her heart speeds up to try to cover the shortfall, which is why every appointment focused on her heart rate. The parts of the brain that steer the eyes and read touch sit in that same territory, so when the flow drops, they falter too. Those signs became the gauges for her treatment.
How we got Claire better (About 1 month)
Claire's plan used her eyes and her sense of touch as gauges. Every exercise had to keep 3 things steady: her brain's blood flow, her eye tracking, and her feeling.
- Head-turn eye drills (Lying down, turning to the right). First, head-turn eye drills. She keeps her eyes on a target while her head turns to the right, which works the left side of her brain. She does them lying down, where that side gets steady blood flow.
- Her tilt breaking point (5 degrees at a time, every session). Next, we find her breaking point. We raise the table 5 degrees at a time and watch her brain's blood flow. Say it starts to drop at 30 degrees. We bring her back to 25 and work right there.
- Peripheral nerve stimulation (Only where she can feel it). Then we add peripheral nerve stimulation to the patches that go numb, like the median nerve in her hand. More input asks that part of her brain for more blood. We only add it once she can feel that area normally at that angle.
- Higher, longer, harder (10 minutes, then 20, 30, and hours). Session by session, she goes higher, and we add exertion and thinking tasks. Her time upright grows from 10 minutes to 20, then 30, then an hour, then a full day.
Claire, about a month later
- Left brain blood flow at 96% to 98% in the first minute, up from 68%
- Never below about 92% while upright
- More energy within the first week
Within a week, the blood flow in her brain was already changing, and she had more energy. After about a month she was driving, working out without crashing, going out to dinner with friends, and planning her return to school.
Watch the case video
