🔗 Share this article

It began on a overcast weekday morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a intense pain sprang behind my one eye. It was followed by rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to soak my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a doctor eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around a single eye that lasts for several hours.

Approximately one in 1,000 people suffer by the condition, and males are more frequently affected. Attacks usually begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for as long as three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial sweating. There exists the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of extended symptom-free periods.

What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or other conditions. Another found 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her attacks started when she was two. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, similar to several triggers, made things more intense. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after moving, but often hid her illness. She was fired from one job, partly due to absences during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Still, the inability to plan life around unpredictable pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a facility.

---

Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his victims' heads.

Historical healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.

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

The disorder were only formally recognised by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that delivers blood to the head. Prominent experts in diagnosing the disorder explain this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache conditions, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which side do symptoms appear? For how long? What season? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the attacks of some people.

But leading neurologists argue the official guidelines need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short cycles with infrequent attacks are managed with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The official guidance need updating to reflect a