🔗 Share this article

It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense pain sprang behind my right eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and again in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-on pain in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense pain around a single eye that lasts up to several hours.

About 1 in 1000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes come in clusters, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to several causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often interpreted her episodes as drunken behavior. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the failure to organize daily activities around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

---

Headaches have been documented throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical records suggest unusual treatments for what some experts would classify as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.

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

Cluster headaches were only formally recognised by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a major blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

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

Despite such advances, diagnosis remains slow. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific characteristics such as tearing, sagging eyelids and stuffy nose help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor talked them through oxygen treatment and drugs until the attack eased.

National guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading specialists believe the guidance need revising to reflect a more defined clinical pathway and help GPs avoid misprescribing. For periodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with infrequent episodes are handled with acute therapy alone. More prolonged or more intense bouts require preventives 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 head where the discomfort is that decreases nerve activity.

The national guidance need revising to reflect a