🔗 Share this article

It was a dreary Monday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain erupted behind my one eye. It was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain eased and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an annual pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition typically start with intense pain behind a single eye that lasts for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Attacks usually start with abrupt, excruciating pain around one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face perspiration. I have the episodic form, which arrives in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended pain-free periods.

What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered 64% of cluster patients reported thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Nevertheless, the failure to plan daily activities around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.

---

Headaches have been documented across the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an evil entity who afflicted his sufferers' heads.

Historical medical texts propose unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing each day at fixed hours”.

Cluster headaches were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which supplies blood to the brain. Prominent experts in diagnosing the condition note this.

In the late 1990s, researchers released the results of a study for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

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

Specialists say wait times in diagnosing and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs occur? For how much time? What season? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are handled with acute therapy only. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that decreases nerve signals.

The national guidance need revising to reflect a