Yes, I’ve been using myself as a guinea pig too! It’s the only way to get to the truth. This condition is so complex that I think it would be impossible for a ‘non-sufferer’ to fathom, although many ‘non-sufferers’ have contributed to my knowledge, which I’ve built up over the last 10+ years. I believe you have to be in possession of ALL of the facts, to figure this one out. As soon as I became aware of your work, I had that ‘Eureka!’ moment. I knew you were on the right track and this forum holds a wealth of knowledge, provided by many wonderful people!
Well my method of calculating Intracranial Pressure is only a rough guide but it’s better than none and certainly far less dangerous than a lumbar puncture!
As I show above, my ‘Poor Mans Tilt Test’ results maybe indicate that I may have higher than normal intracranial pressure when trying to stand up for any length of time. I can also have an episode sitting down though (though these are fairly rare in comparison). I think it does indicate a frank Dysautonomia, where my autonomic nervous system is not regulating things appropriately. I certainly function much better sitting down, standing up brings on all kinds of problems, as you can see.
For POTS people there are other factors in play, for instance I heard that POTS people have LOWER CPP in a vertical position due to blood pooling, so if this is factored in, it makes the ICP even higher.
Regards
Barbara
(UK)