I’m quite curious about this q too–I can offer a few thoughts discussed with me by Dr Bolognese at tci a few years back , I don’t know how much may have been learned since .
I and another zebra=zipperhead sort /sat discussing some of our odd /in common symptoms and difficulties with Dr B -one we shared then was an intermittant csf leak , that Dr B felt was perhaps our own inbuilt presure release valve , that because of compliance , acts as that one way out only valve .
In my case , I feel it open up if my head presure feels way up–and a constant post nasel drip starts , comming from the eustasian tube to the back of my throat . Over the years since it started , it’s becoming more difficult to get my head tilted to the exact angle that helps open the leak up . I also find some strange tongue to the top of my mouth -then try to pump the eustasian tube opening through air from my throat ( wiggles some tiny bone feeling in my ear ) -but helps get the leek draining . Soon -perhaps 30 mins -hour -that head pressure is somewhat back down .
I’m sulfa family allergic -so diamox was not something Dr B felt was totally wise to try at that point -I’m trying to get better info on the possible risk right now – so can’t give personal impacts info –there was another med he did tell us about /that can lower the about of csf someone produces , havn’t found the name again yet , but will see Dr B next month if Dr Diana or someone more knowledgable than I am , doesn’t respond .
As to the compliance issue this is aimed at – just a retired nurses first guess here , but I think it might well actually matter what your actual presures are , and how out of whack they can be in some of us . For example , I’m currently having huge pots impacts , and it’s really clear my BP and icp are swinging wildly in response to both physiological processes , and body position upright vs reclined , abd compressed ( think squat or valsava ) -vs deep relaxed breathing with my back braced to keep abd muscles relaxed .
my leek patern can take hours to stop once started , but those wild presure changes happen during the time the leek is perceptable ( it leeks so fast , I’ve got to gulp frequently just to keep the gulps of fluid from becoming way to much IF I try to use the tounge -air pumping trick I somehow found worked years before I had a clue what was happening ).
At that stage , the compliance is clearly in favor of no bug path back –but what about when the ICP seems to go low instead -or bp crashes ( pots -synscope )–gosh , I don’t know more than you do – how this really would play out -so it’s two of us =hoping someone knows more 🙂
My friend who was there during the discussion with Dr B ,and I both had retroflexed od issues as well – when she tiped her head back and tried to swollow ( can’t happen with the retroflextion ) -she sprung a gushing csf nose leek –yikes , lol = we both learned NOT to try that again !
guess I should add , we are both eds /chiari /cci /ect affected –currently add both multiple sclerosis and pots =synscope ect to my situation –but it’s been astounding to me how much science and sharing info has brought bigger understanding and improvement too -I’ve faith we will find some better insight through asking .
Wish I could tell anyone a bit more on this -adding my plee -anyone up to trying to help us both understand this one ( or sulfa allergy risk /diamox -and or what the other med helping reduce csf production is ) -one last thought too – there was q at the time this discussion took place , of biology gone haywire in either overproduction of csf , or under reabsorbtion of the csf -science not yet sure which /or in individuals both perhaps – is responsable for the imbalance seen —and also later I think issues of overall compliance being investigated in chiari /is this stuff understood in eds science yet ? can someone direct us to compliance study or info ?
Sarah in Paradise CA -eds /chiari /cci/ms /pots /multiple allergy’s ect -far to much to keep typing -lol .