Autonomic testing shows OCHOS

I recently had formal autonomic testing because of my POTS symptoms, and my results were more abnormal than I expected. My neurologist has now diagnosed me with OCHOS (Orthostatic Cerebral Hypoperfusion Syndrome), which he feels is a type of POTS.
I’m hoping to find other people who have OCHOS and/or those who have had similar patterns in their autonomic testing.

The biggest findings were:
• My brain blood flow dropped ~50–60% during the tilt-table test (measured by TCD).
• My ETCO₂ was very low, starting around 23 and dropping to about 18 during the tilt.
• My sweating/sudomotor test was slightly abnormal in my hands but normal in my feet.
• My Valsalva test was slightly abnormal.
• I also had a lot of tachycardia, cold/sweaty hands and feet, and pretty obvious blood pooling in my legs.

My neurologist thinks the very low CO₂ is related to a fight-or-flight/hyperventilation response that happens when I’m upright, rather than the low CO₂ being the original cause of everything.

I’d LOVE to hear from anyone who has had OCHOS specifically, especially if you’ve had TCD testing. I’m also really interested in people who have had a large drop in brain blood flow and/or low ETCO₂

If you’ve had similar testing, what did your results look like? And did anything actually help?

I’m trying to understand how unusual my results are and whether other people with POTS/autonomic dysfunction are seeing similar things.

Not looking for medical advice, just looking for those who share similar experiences!

r/POTS r/dysautonomia r/orthostaticintolerance
r/OCHOS r/autonomictesting r/tilttabletest r/othostaticcerebralhypoperfusion