🔗 Share this article

It was a dreary Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp sensation bloomed behind my right eye. It was followed by quick stabs, like electric shocks. As each class came and went, the discomfort subsided and then came back with increased force. Multiple times that day I left a colleague with activities and ran to the staff bathroom to douse my face with cool water. I took paracetamol, but the pain remained unbearable.

The headaches appeared frequently that autumn, and again in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe discomfort behind a single eye that lasts up to three hours.

About one in 1,000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually begin with abrupt, excruciating pain around one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in periodic cycles; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What connects sufferers is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition deteriorated through childhood. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken episodes. Support finally came from her parent and then from her partner, 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 dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist hospital.

Still, the failure to plan life around erratic pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

---

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

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

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

The disorder were only formally recognised by global headache committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which supplies blood to the brain. Leading specialists in treating the condition note this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, 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 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being diagnosed in recently, after a physician looked up his symptoms.

Specialists say delays in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor talked me through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the attacks of some people.

But leading neurologists argue the guidance need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are handled with acute therapy only. More prolonged or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need revising to reflect a