Advaita

A doctor recommended me over to a pain specialist. I thought, great, someone will know what to do with the pain. Then I looked at the form. It doesn't talk about pain management. It mentioned CSF leaks. So off to Google and I came across a slightly hard to find URL from a Marfan conference with Dr. Carroll as a speaker. He has come to theorize POTS + headache + hypermobility = CSF leak. I had earlier figured out CSF was likely what was happening to me but had no idea it could be a contributor to all the more odder ANS dysfunction I was having, such as wild swings in BP. I am awaiting my visit to him, unfortunately having to pay out of pocket. Perhaps he can give advice about a blood patch. He says one of his first patients returned to mountain biking. That sounds sublime. Note: So many doctors do not know how to diagnosis a heritable connective tissue disorder, especially hypermobility. I have gone from place to place, including doctors with EDS patients in their practice and a geneticist. I can read and follow the Brighton criteria, why on earth is every other doctor coming up with their own set of rules? Plus there is so much more new data coming in...the Beighton Score was not all inclusive in its design - its a starting point. People age, hypermobile people suffer injuries, osteroarthrtitis, muscle tightness...not all of us have skin that is elastic, or elastic in the areas doctors want to evaluate...it is a spectrum of a syndrome and especially individualized. It seems now that people are starting to discover the clusters of symptoms. If doctors seem wary to look into EDS, as them to look into heritable connective tissue disorder, or joint hypermobility syndrome. In my persona experience of trying to get the CSF leak looked at ahead of the genetic visit, I got a lot of blank stares. It will be important to demonstrate your relationship with weak connective tissue first (at least in comparison to the general population), since almost all spontaneous CSF leaks are the result a connective tissue disorder (as related to by an expert online lecture).