🔗 Share this article

It began on a gloomy weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sharp pain bloomed behind my one eye. Then came quick shocks, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.

This condition often start with intense discomfort behind a single eye that lasts up to three hours.

Approximately one in 1,000 individuals suffer by the condition, and males are more frequently affected. Attacks typically start with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients reported suicidal thoughts during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, like several causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport 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 lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around erratic attacks 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 family during the paralysis caused by the worst episodes. “It robs you of the simple liberties 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 across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the topic. They attributed the disease to an evil entity who attacked his sufferers' heads.

Ancient medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

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

Cluster headaches were only officially recognised by global headache committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Prominent specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in 2014, after a physician looked up 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 severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a helpline during an bout in early 2021; a calm volunteer talked me through oxygen therapy and medication until the attack passed.

Official guidance on treatment advise that patients are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief cycles with occasional attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes paired with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a