🔗 Share this article

It began on a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new class, when a intense sensation erupted behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class came and went, the pain eased and then returned with greater intensity. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense pain around one eye that lasts for several hours.

About 1 in 1000 individuals suffer by the disorder, and men are more frequently affected. Attacks usually begin with sudden, severe pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure dropped to four percent when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.

Historical healing texts propose bizarre remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's attacks began in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

A charity trustee, in her late seventies, has experienced the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific medication administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the bouts of some individuals.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the pain is that reduces nerve activity.

The national guidelines need updating to reflect a