🔗 Share this article

It was a overcast weekday morning in September 2016. I worked as a educator, attempting to manage a new class, when a intense pain sprang behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

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 routine: aura in the shower, early twinges on the train, full-blown agony in the classroom by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe discomfort around one eye that persists up to several hours.

About one in 1,000 individuals are affected by the disorder, and males are more frequently diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which occurs in periodic bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What connects patients is the intensity. One study rated the pain at 9.7 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients experienced thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Alcohol in her teens, like several triggers, made things more intense. After drinking sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her condition. She was fired from one job, in part due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Nevertheless, the inability to organize life around unpredictable 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 looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The first account of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical records propose unusual remedies for what some observers would describe as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including herbal concoctions to other, more folk cures.

It was a Dutch physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.

The disorder were only formally recognised by international medical committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Leading specialists in treating the condition note this.

In 1998, scientists published the findings of a study for which they had triggered attacks in patients and observed the episodes in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain characteristics such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has suffered from the condition for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm advisor guided me through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.

But consultant neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The length of the cycle dictates the treatment.” Short cycles with infrequent episodes are managed with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a