🔗 Share this article

It was a dreary weekday in the morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain sprang behind my right eye. It was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and ran to the staff bathroom to douse my face with cool water. I tried aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

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

About one in 1,000 individuals suffer by the disorder, and men are more often affected. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for up to three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the absence of long pain-free periods.

What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster patients reported thoughts of self-harm amid attacks; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After having sherry at her school leaving party, she remembers barely being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a specialist hospital.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described throughout the ages. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write authors in a book on the subject. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical healing records propose bizarre remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European physician who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such progress, identification remains slow. One man's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given inadequate therapies.

A charity trustee, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and medication until the attack eased.

National guidelines on management recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. Many 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 national guidance need revising to reflect a