Joan, How distressing to hear of your consult with a neurologist! Not only did he ignore your reason for the consult, but to say come back in two years? TWO YEARS?! Please don't give up on neurologists. Unfortunately, you and I know all too well at this point there are great doctors and there are definitely some not so great doctors out there. Try the doc your neurosurgeon suggested. Is he local (I have no idea where you live) or a Mayo doc? I know you want to first know the cause of your headaches - then treatment for them. When you get to the treatment, have you ever considered something like acupuncture for pain? I have no idea if it's effective for headaches, but I do believe in combining traditional western treatment with proven treatments that have been around for many years, like acupuncture.
I've been having some strange symptoms - phantom smells that smell like smoke. It's especially strange for me because I lost my sense of smell in 2001 from surgery to remove my meningioma. I literally haven't had any sense of smell for 19 years and all of a sudden in November last year I started smelling smoke off and on throughout each day. I just completed a 3 day ambulatory EEG because sometimes phantom smells mean you are having focal (partial) seizures, I have no other symptoms and I'm completely alert but it the results show focal seizures, I'll have to increase or change my seizure med. The one I'm on has kept me seizure free since 2002, so I hate the thought of making changes. I will have the results in about a week. My neurosurgeon was the first doc I contacted when the smells started and he said it wasn't from the meningiomas I had gamma knife for. My MRI's have been stable. My neurologist is treating me for the phantom smells. Best wishes, please keep me up to date on your headaches, Jill