Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.
As you know there are several causes of headaches. Headaches can be divided into primary and secondary. Primary headache disorders are headaches without a direct cause. Secondary headache disorders are due to an underlying problem, such as a tumor, medication side effects, central nervous system infections, clots in the veins in the brain etc. Primary headache disorders are more common than secondary ones, meaning that most headaches are benign and are not due to tumors, aneurysms, etc. It sounds like you have had extensive testing to exclude secondary causes, as well as non-neurologic causes such as TMJ. That makes a primary headache disorder more likely.
The one cause of headache that comes to mind given your already extensive work-up that has been normal is benign intracranial hypertension, also called pseudotumor cerebral, or idiopathic intracranial hypertension, a disorder characterized clinically by headaches and vision loss, and sometimes tinnitus (ringing in the ear that is synchronous with the pulse). It results from elevated pressures of cerebrospinal fluid, the fluid that bathes the brain and spinal cord. Dizziness may also be a symptom. The headache is usually global (all over the head) and pressure-like. BIH predominanlty occurs in people who are overweight, women, and those taken specific medications such as retin-A (the acne medication), vitamin A, and tetracycline antibiotics. It is diagnosed with a lumbar puncture (spinal tap), and opthalmologic evaluation (seeing an eye doctor), and is treated if it is diagnosed with medications and in rare cases surgery. However, BIH does not however typically cause neck pain, which it sounds like is a prominent symptom for you. In general, causes of neck pain associated with headache are cervicogenic headache and occipital neuralgia.
Cervicogenic headache is a headache that is "referred" to the head from bony structures, muscles, and other soft tissue in the neck and shoulders. Symptoms are usually one-sided and include: precipitation of head pain by neck movement or awkward neck positions, head pain when external pressure is applied to the neck or occipital region, restricted range of motion of the neck, and neck, shoulder and arm pain. Treatment for cervicogenic headache includes physical therapy, medications, behavioral therapy, and other modalities.
Occipital neuralgia is caused by irritation or injury to two nerves that run from the upper neck to the back of the head. The irritation could be due to neck trauma, pinching of the nerves (by muscles or arthritis), and other causes. Symptoms include a piercing sharp pain that travels from the upper neck to the back of the head and behind the ears. It is usually a one sided pain but can be on both sides of the head. Treatment includes physical therapy, medications, and in some cases injections, not epidural nerve blocks but rather occipital nerve blocks during which a physician injects the irritated nerves with an anesthetic.
Continued followup with your headache specialist is recommended.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.