🔗 Share this article

It was a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a intense pain erupted behind my one eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the pain eased and then returned with increased intensity. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in the classroom by mid-morning. In 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically begin with intense discomfort behind a single eye that lasts up to several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal bouts; others have continuous cluster headaches, characterized by the absence of long pain-free periods.

What connects patients is the severity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was dismissed from one job, partly due to absences during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs 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 description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his sufferers' heads.

Historical healing texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the medieval times, migraine was identified as a separate condition, with therapies including herbal concoctions to other, more superstitious remedies.

It was a Dutch physician who provided the initial detailed account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.

The disorder were only formally classified by international headache societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in treating the disorder explain this.

In the late 1990s, scientists released the results of a study for which they had induced cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, identification remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor looked up his complaints.

Specialists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as redness, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.

A charity trustee, 78, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a reassuring volunteer talked me through oxygen therapy and medication until the attack passed.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which reportedly helps manage the bouts of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief cycles with infrequent attacks are handled with acute treatment only. Longer or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the side of the skull where the discomfort is that decreases nerve signals.

The official guidelines need revising to reflect a