What I Wish People Understood About Cervicogenic Headache

June is Migraine and Headache Awareness Month, and I’d like to discuss a type of headache that, although considered fairly common, is often misdiagnosed and misunderstood: cervicogenic headache.

Cervicogenic headache is a secondary headache, meaning it is a result of an underlying health condition, such as neck injury, infection, or high blood pressure. It develops in the neck, but is felt in the head, and is often mistaken for a tension headache or migraine. Temporomandibular joint disorder (TMD or TMJD), often related to cervicogenic headache, can develop for many different reasons, and causes pain in the jaw, ears, and teeth. It is believed that 44% of people who live with cervicogenic headache also have TMJD. Left untreated, cervicogenic headaches and TMJD can become debilitating, and despite the fact that there are several treatment options, many people struggle to find relief.

Ten years ago, I was hospitalized in bed for 18 months while recovering from a rare neurological autoimmune illness. This experience resulted in kyphoscoliosis (an abnormal curve of the spine on two planes: side to side and back to front). This causes my upper torso to twist left, my shoulders to round forward, and my head to tilt left and forward. A few years after leaving rehab, I began to develop cervicogenic headaches. The tension begins in my neck and the base of my skull, and a painful “pressure” builds in my jaw. The pressure and pain then radiate upward on one side, then often fills my entire head. In the beginning, they were not as frequent and, while they were painful and annoying, they did not impair my ability to carry on with my day. In less than a year, however, they became a daily occurrence, and their constant painful presence was intrusive and debilitating.

Acetaminophen and ibuprofen had no impact. Opioids were minimally effective, and came with side effects and rebound headaches. Cannabis, while effective for my other physical and mental health impairments, did nothing to alleviate the headaches. Stretching, massage, heating pads, analgesic patches, and ointments only provided temporary relief that faded quickly. Meditation, deep breathing, and relaxation techniques helped calm my distress and relax muscles, but did nothing to alleviate the constant pain.

When I spoke to my neurologist about them, he ordered some scans, which all came back normal. He believed they were migraines from the acquired brain injury, so he prescribed medication to try to prevent them. When those medications didn’t work, he prescribed medication to try to alleviate the pain. When that didn’t work, he suggested that I “may just have to learn to live with them,” and sent me to a pain management clinic.

At the pain clinic, after filling out the paperwork, sharing my extensive medical history, listing my resulting impairments, describing my headache symptoms along with my other areas of chronic pain, and explaining the various treatments I attempted, the first thing the therapist asked me is whether I have tried meditation and relaxation techniques. I almost walked out right then, but I took a deep breath and answered “of course.” After further discussion about sleep, exercise, and diet (none of which were an issue for me), she referred me to a physiotherapist, who re-instructed me in the same stretches and exercises I had already been doing for years. I was exasperated. I did not see the physiotherapist again, nor did I bother to return to the pain management clinic.

At my next quarterly appointment with my physiatrist, I burst into tears. I was already living with chronic daily pain in several areas of my body, and the headaches were pushing me beyond my ability to cope. My physiatrist explained that they were cervicogenic headaches as a result of my spinal abnormalities and the strain on the musculature, which was why the typical medications for migraines were not effective. There was a new headache clinic being developed, so he signed me up as the first candidate.

When they finally contacted me, I attended a series of interviews and examinations with four doctors of various disciplines. They were very thorough, listened attentively to my answers, and took copious notes. I believed I was finally going to get the help I was desperate for. After months of waiting for the doctors to confer and create a plan of action, I received a phone call from one of the doctors. It had been decided that, since I was being assessed for a custom backrest for my wheelchair, we would wait to see if the backrest would make a difference. That’s it? After all that? I hung up the phone and cried. I’m still waiting for the funding approval for that backrest, by the way.

When I returned to my physiatrist, we discussed other options. Botox injections to relax muscles in other areas of my body had been relatively effective, but he was reluctant to use it in my neck for fear that it would make my neck muscles too weak. We opted for an occipital nerve block. I thought it seemed like a perfect solution! Block the nerve = block the pain, right? Apparently not. I had about three blessed headache-free days, and then the headaches returned.

My physiatrist then told me about the recent successes he has seen with Botox injections in the head, rather than the neck. At that point, I was willing to try anything, so we arranged an appointment. This time, the relief lasted for about two weeks, but it wasn’t consistent. Some days were pain-free, others would start out fine but end in pain, and some days that pain would last all day but it was milder than usual. But at least it was something, some relief after years of chronic daily pain. So, we are going to tweak it and try again.

I’m really hoping it helps because it may be the last option available to me for now. I am not a candidate for the much more invasive treatment options. In the meantime, out of necessity and experience, I am managing as well as I am able. I am acutely aware of which activities, body positions, and times of day trigger or exacerbate my headaches, and I plan accordingly. My headache toolkit contains all manner of meds, massagers, oils, balms, patches, heating pads, supplements and herbs, which I use to temporarily relieve the pain and tension. I continue to do my stretches, breathing and relaxation exercises each day in a vain attempt to prevent the next day’s headache.

Getting a correct diagnosis of the type of headache you are experiencing and the appropriate treatments for that type is crucial. Not all headaches are the same. In fact, the International Headache Society identifies 150 different types of headaches. Because headaches can be a symptom of an underlying condition, investigation and accurate diagnosis of chronic secondary headaches such as cervicogenic headache can be an important step in identifying and treating these conditions.

If you’re experiencing headaches similar to what I’ve described, I hope I’ve given you a new avenue to explore. Anyone who lives with chronic headache pain knows just how physically and emotionally exhausting it can be, especially when you don’t know what’s causing them, or what treatments are available. If you live with cervicogenic headaches and/or TMJD, please share your experiences and treatments that have helped you in the comments below.