🔗 Share this article

It was a overcast Monday in the morning in September 2016. I worked as a teacher, trying to settle a new class, when a sharp pain bloomed behind my one eye. This was followed by quick stabs, similar to lightning bolts. As each class progressed, the discomfort eased and then came back with greater intensity. Four times that day I left a colleague with activities and ran to the school bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and once more in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

Cluster headaches often begin with intense discomfort behind one eye that persists up to several hours.

About one in 1,000 people suffer by the disorder, and males are more often affected. Cluster headaches usually begin with sudden, severe agony focused on a single eye that peaks within minutes and lasts 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 sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous cluster headaches, defined by the absence of extended symptom-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the transport home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, her spouse. “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 dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the paralysis caused by the worst episodes. “It steals from you of the small freedoms we don't appreciate 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 described across history. “The earliest description of headache comes by way of the Mesopotamians in antiquity,” write authors in a publication on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest unusual remedies for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by global headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, scientists released the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician researched his symptoms.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by eliminating other primary head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do signs appear? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who replied. The author recalls calling a helpline during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the attack passed.

National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug delivered by injection. No tablets or opioids should be used. Prophylactic options include verapamil, which apparently helps manage the attacks of well-known individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are managed with abortive therapy only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve signals.

The official guidance need updating to reflect a