A valsavla maneuver?? Isn't that when you close your nose and try to clear your ears?? Please give more details on your onset.
Yes that's right, although more extreme. I tried to blow up what I thought was a balloon, but it was actually a water bomb. I blew so hard I passed out. I was completely well with no symptoms at all prior to that, but since then I have never really been able to be upright due to horrible symptoms of presyncope, severe headache (I feel headache is not the word I want to use as it is far more than a headache, but I don't have another descriptive term, basically it feels as if I am dying if I try to force myself to be upright), nausea, light & sound sensitivity, cognitive impairment & more.
So my cause was very traumatic/structural, with a clear inciting event. It was 5pm, 4th August 2014. Since then I was diagnosed with both POTS & EDS - I came across both of these myself by researching my symptoms, & saw specialists who confirmed these with tilt table, Beighton score etc.
Once you read about spinal CSF leaks, my mode of onset, symptoms & connective tissue disorder scream CSF leak, but I did not come across this diagnosis until 4.5 years in. I thenhad a brain & spine MRI with contrast which was normal, but these miss 20-30%, with that figure increasing as time passes since onset.
Meantime, before learning about CSF leaks, I saw Jeff's story regarding CCI, then Jen, identified with much of what they had experienced symptom wise, & started to pursue that with upright MRIs & cineradiology in Barcelona. Dr Gilete diagnosed cranial settling & I have been offered fusion surgery with him.
I sent the same scans to Dr Bolognese though and he wrote back no instability (however he doesn't look for vertical instability aka cranial settling on scans) but I should get checked for a CSF leak.
About that time I came across Dr Carroll's video on youtube re POTS & CSF leak, & watching that was like a lightbulb came on for me. I learned that valsalva manoevres, even a coughing fit or hard sneeze in some people, can cause a leak, it is a recognized mechanism for how a person can be instantly & profoundly incapacitated & unable to be upright. Also having a connective tissue disorder like EDS is a risk factor, & females get them more commonly than males. And tragically a substantial number had been diagnosed with POTS & told nothing could be done, when actually they turned out to have a treatable problem.
So that is why I am at a crossroads. If you read the symptoms of a CSF leak, & those of CCI, they are remarkably similar. That is why I would love to hear from Jen how the symptoms of each compare to each other, having experienced both. Is there some way to tell them apart by how you feel?
B xxx