The Puzzle of Refractory Headaches: Part I

Refractory headaches are very problematic, causing pain for the patient and consternation for the physician.  A possible cause of refractory headaches and neck pain is pressure on the occipital nerves, which travel from the upper neck to the back, top and sides of the head. 

Welcome to headache.zone.  I am Dr. Pamela Blake.  I am a Headache Medicine specialist in Houston, Texas, where I direct a Headache Center that only treats patients with headache disorders.

headache.zone is a blog on which I can communicate directly to the public about general topics in Headache, as well as on a topic that is of particular interest to me, namely, the causes of chronic headache.  We Headache Medicine doctors sometimes also use the term ‘refractory headache,’ meaning a headache disorder has not responded to the treatments that are usually effective in reducing headache.  Refractory headaches are a very big problem in the United States and around the world; headache disorders were shown to be a leading cause of disability, particularly in women under the age of 50, in a large study called the Global Burden of disability, that was published in 2016 the medical journal Lancet.  We can assume that many of the individuals with disabling headaches had refractory headaches. I see patients with refractory headaches almost daily in my practice.

There is, naturally, much interest in the causes of refractory headaches.  We will discuss some of the known causes over the next few months.  The cause that I want to address first, because in my experience it is a common cause of refractory headache and also neck pain, is pressure on nerves on the surface of the skull.  We can also refer to these headaches as ‘nerve compression headaches.’  Pressure on nerves is a cause of pain in many parts of the body, and the neck and head are no different.  Think of the condition called carpal tunnel syndrome.  Many people may be aware of this condition, which is pain, tingling and weakness in the hand.  Carpal tunnel syndrome is caused by pressure on the nerves in the wrist, and it is often associated with physical activities that are repetitive, such as typing. The anatomy of nerves and other structures that pass through the wrist (part of which is known as the carpal tunnel) causes inflammation and pressure on the Median Nerve as it passes through the carpal tunnel. The irritation of the nerve causes pain and sensory symptoms like tingling and burning, and because this nerve also happens to have what we call in neurology a “motor function,” meaning the nerve sends signals to muscles, weakness can also result from carpal tunnel syndrome. The treatment of the condition is to rest the hand and wrist to avoid further injury to the nerve, sometimes the use of steroids either orally or injected to the wrist to reduce the inflammation, and occasionally surgery to reduce the pressure on the nerve and create more space for the nerve to move easily in the carpal tunnel. Treatment of carpal tunnel syndrome is usually very effective, and most people do not find the condition to be ultimately disabling. This phenomenon occurs in places throughout the body, as well.

Nerves, which travel through the back of the neck up onto the back of the head can similarly be compressed. These nerves are referred to as the “occipital nerves,” and they are responsible for sensation on the back, size, and top of the head. They may also have a motor function supplying muscles in the back of the neck.  In the practice of Headache Medicine, it is common to see patients who have pain in the distribution of the occipital nerves. In fact, in 1992, some doctors in Denmark wondered if there may be pressure on these occipital nerves as the cause of their patients’ refractory headaches and neck pain. They performed a surgical procedure to remove pressure from those nerves by removing a little bit of the muscle in the upper neck that was compressing the nerves, and many of the patients improved, at least temporarily. It is interesting to note that the senior author on this paper, meaning the most experienced scientist and the one who is listed last as an author on the paper, was a very famous and early practitioner of Headache Medicine. His name was Ottar Sjaastad.  Dr. Sjaastad, who just passed away recently, was a very important figure in the field of headache medicine. He helped to establish the International Headache Society, which continues to exist and is the largest headache organization in the world. Dr. Sjaastad was also the first editor of the journal Cephalalgia, which also continues to exist and is a very important journal in Headache Medicine.  Here is a link to Dr. Sjaastad’s study, published in the journal Headache, which is the journal of the American Headache Society: Headache. 1992 Apr;32(4):175-9. doi: 10.1111/j.1526-4610.1992.hed3204175.x

The surgery that Dr. Sjaastad and his colleagues performed is today considered rudimentary, as they only removed a small piece of the muscle that was putting the pressure on the nerves. They performed the surgery using only local anesthesia and through a small incision. They therefore were not able to view the entire course of the occipital nerves and to make sure that they were removing pressure from the entirety of the nerves. Nevertheless, they did report that not only did many of the patients get better, but also, when pain did recur, those patients wanted to undergo the procedure again to give them relief from their constant pain. The work performed by Dr. Sjaastad and his colleagues in Denmark 32 years ago remains an important landmark in the recognition that pressure on nerves outside of the skull can be a cause of head and neck pain, and that removing pressure from those nerves is not only possible, but helpful. For a number of reasons, this treatment for chronic headache did not advance at all for many years. One of those reasons may have been the introduction of successful classes medications to treat headache about a year later. This class is called the “triptans,” and they are still very widely used today as a highly effective treatment for acute headaches. The introduction of the triptans not only provided relief for a lot of patients, it also opened new avenues that were commercially attractive for the medical treatment of headache, and this may have distracted from the use of surgical treatments. The role of surgery in the treatment of headaches and neck pain did not reappear until over a decade later, and I was introduced to it in 2004. I’ll talk more about this in the next blog entry on Headache.Zone. I’m glad you’re here, and I hope that the information we discuss can be of use for you. 

I want to leave this entry on a positive note. There are numerous, highly effective treatments available for headache today, and most of the patients I see who come to me with refractory headaches can indeed experience significant relief with the use of medications, and/or botulinum toxin injections, and/or surgery to relieve pressure on nerves on the surface of the head. So, if you are a person suffering with refractory headache, please be optimistic that you can experience relief.

Medical Disclaimer


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