🔗 Share this article

It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation erupted behind my right eye. It was followed by quick stabs, similar to electric shocks. As each class came and went, the discomfort eased and then returned with increased force. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to soak my face with cold water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

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

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks typically begin with sudden, excruciating pain focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in seasonal bouts; others have chronic cluster headaches, characterized by the lack of extended pain-free periods.

What unites patients is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, similar to several causes, made things more intense. After drinking sherry at her school leaving party, she recalls hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated behavior. Support finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize life 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 looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the small liberties we don't appreciate 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 described across the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts suggest bizarre treatments for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.

It was a European physician who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, scientists released the results of a study for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four operations before finally being diagnosed in 2014, after a physician researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first arrive to A&E or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the guidance need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout dictates the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve activity.

The official guidelines need updating to reflect a