The important thing for all of us, is to get our raised intra-cranial pressure down, one way or another and, if cranio-cervical instability is playing a part (i.e. if you are a stretchy type EDS person) you may need to stabilise the cranio-cervical joint with a good supporting collar (like a Philadelphia – NOT a soft collar as this does not support the head), when you’re doing anything that involves a lot of head movement. I would avoid flexion at all costs because myself and others have found this exacerbates symptoms.
More recently it was suggested to me, by a practitioner, that Evening Primrose Oil (or more precisely VegEPA) can help get rid of chemicals in the brain that there is an excess of. Whether this is a significant amount or not, I don’t know but one would think that this would reduce overall volume and help relieve symptoms.
I’m only just starting out using this, so time will tell. If anyone has had any measure of success with this it would be nice to hear.
Note: I have stopped using the Evening Primrose Oil (Aug 13) as I felt it actually made me more ‘Foggy Brained’