Hi Everyone, I'm new here, but very interested in what you've all said. I have suffered from migraines for 18 years. I was getting them 20 times a month and could barely function. I have 4 young daughters and so sick. I lost so much weight I looked gaunt. I tried doctors, meds, had all the scans, etc....just like all of you. I live in the Los Angeles area so I finally went to UCLA then to USC to their top neurologists. I found the best doctor at USC.
It's taken me over 2 years to get myself back in order now, and I have some problems from time to time, but feel like I can live again. I have the constant burning, pressure feeling that many of your are saying. It's like there's a fire on your scalp that won't go away. It runs down my neck and around the side of my head. It even goes down to my shoulders and into my back.
I was diagnosed with Occipital Neuralgia. It's caused by a blunt trauma or major stress. I was in a car accident many years ago. That could have been one factor to how this started for me. In short, it's the occipital nerve that's pinched and needs to be released. I did physical therapy, nerve block injections, and meds for the ON and my migraines. I take Topamax, Depakote, Imitrex, Frova, and Amitriptyline. The Amitriptyline is the med that helps to control the burning, on fire feeling. The nerve block injections are put right into your neck. They can work for short and then long term as you get better. I recommend you ask a neurologist about it. If they say no way, then you know that doctor has no interest in really wanting to help you get better. I have been there and still suffer. It goes away and comes back too. You need to avoid carrying heavy things as it weighs on your shoulders where part of your nerve lies.
Good luck and I too feel your pain!