🔗 Share this article

It was a gloomy Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my right eye. This was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain eased and then came back with increased force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.

The headaches returned frequently that fall, and again in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: aura in the morning, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically begin with severe pain around a single eye that persists up to three hours.

Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Attacks usually start with abrupt, excruciating agony focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients experienced suicidal thoughts during bouts; the number fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, like many causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been documented throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a key artery which delivers blood to the brain. Prominent experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a study for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The results, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being diagnosed in 2014, after a physician looked up his complaints.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a helpline during an bout in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

National guidelines on management recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.

But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Short bouts with occasional episodes are managed with abortive treatment only. Longer or more intense periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a