Wow, Miss Bird, I must first ask you who the pain specialist in Cheswick is? We may have some potential for being coauthors… It sounds like you’ve seen The Driscoll Theory? Were you able to get the book? Was your doctor able to see the book? You are doing the right thing in having the “regular” stuff ruled out (we hate to miss a brain tumor, etc)… Many of us have little or no Chiari, but can still “cork”, much like a 5mm Chiari. In the past, radiologists didn’t make the call of Chiari unless it hit 5 mm. That seems a little silly to me, especially if MRI reveals that the brain shifts downward when the patient is vertical (perhaps indicating some hypermobility). Were your opening pressures normal on your LP? High? Low? Frustratingly, the symptoms of low intracranial pressure are almost the same as those of high intracranial pressure (sometimes the patient is more symptomatic in the vertical position with a spinal leak, but not always). What I’ve seen happen in an LP is that the opening pressure is VERY high, but then the draining of CSF just sort of STOPS. This puzzles some of the doctors, but I believe it hints at “corking” at the top of the spine, especially if their is lower pressure below the brain than above the brain. Did your MRI reveal any pseudo-tumor cerebri? That diagnosis will get you a trial of Diamox! 😉 Out of 20 eye exams of EDS patients, I found TWO with pseudo-tumor cerebri that the radiologists missed. They’re human, after all. It happens. When I order MRI’s for EDS patients, I write a small dissertation (ha) and always ask for small slices around the optic nerve to check for pseudo-tumor cerebri. Perhaps the pain specialist in Cheswick would be willing to try Diamox (assuming your CO2 levels are 22 or above). If your headache is from high intracranial pressure, you will know almost immediately, so just a couple of pills will do it. Some say 2 hours. My son and I got overnight relief (as did my daughter, who had headaches her entire life). It is important to know that if we have weak dura (perhaps dural ectasia), with the added risk factor of high intracranial pressure, we can “spring a leak” (spinal). We then develop LOW ICP, that when repaired, usually results in the pressure going too high (again). It’s a tough cycle for both the patient and the doctor. Oh, Topamax (a medication for migraines) has Diamox in it. That may be a more palatable option for the doctors (but it subjects you to the potential side effects of the additional ingredients that you may not need). Please keep us posted!