I really do feel for you, while I don't have hydro myself (on here because my daughter does) I have neuro muscular issues and have had 2 disc fusions with one in my neck, and have chronic migraines/headaches myself.  When I describe one type of the pain I get in a certain position (when I look up) I explain to my neuro or neurosurgeon that I can only relate it to what my daughter's hydrocephalus must feel like when her shunt isn't working.  On that little side note, something that has helped me with that type of pain has been trigger point injections(small needles stuck into knots that release the tension in the neck and shoulders that can lead to chronic headaches, and occipital blocks, (shots into the occipital nerves at the base of the skull that are used for migraines that don't respond to meds) both of these have helped me a great deal when all the meds didn't.  neither are a miracle or permanent but possibly if you aren't getting results from your neurosurgeon or neuro maybe trying a pain specialist?  I know I went through about 3 different ones before I found one I respected and found useful.  It's very important that if you aren't getting an answer to your problem to keep searching.  Of course if you have hydrocephalus you need to follow up and make sure your shunt is still working properly, but as long as it is, try some different options.  There is no reason to suffer.  Please keep looking.

michelle