Welcome to Healing Well. Sorry to hear about what you have been going through. I know what you mean about being active, as I have a very active job (Pre-school) and over the years have had to take far too much time off sick!!
I am no Doc, but I tend to agree with you that this may be a CSF headache, but you may even have two types here! So pleased you are going to see a Headache Specialist as most Neuros don't know enough about headache as they deal with so many other things. Hope this gets pushed through quickly for you.
I think it is a good idea to be rid of the meds you have been trying to give your system a break, it will help the HS (Headache Specialist) see more clearly what is going on without any masks! I am sure I don't need to tell you to be careful with any pain medication you do take to abort your attacks in case you start with rebounds/medication overuse headaches. If you haven't already done so take a detailed headache diary when you see the HS, stating level of pain what you have used to treat it, how long each attack lasts, as this is what will help the HS to make a good diagnosis.
Please let me know how you get on?
Co-Moderator of the Migraine/Headache Forum
DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur
Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn