🔗 Share this article

It began on a overcast weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sharp sensation bloomed behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cold water. I tried aspirin, but the agony remained unbearable.

The headaches appeared repeatedly that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind a single eye that persists for several hours.

Approximately 1 in 1000 individuals suffer by the condition, and males are more often affected. Cluster headaches usually begin with abrupt, severe pain focused on one eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal cycles; others have chronic attacks, defined by the absence of long pain-free periods.

What unites sufferers is the severity. One study rated the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts during attacks; the number fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.

Nevertheless, the inability to organize daily activities around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major 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 antiquity,” write authors in a book on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual remedies for what modern observers would describe as a headache disorder. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more superstitious cures.

It was a European physician who provided the initial detailed account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very severe headache occurring and vanishing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel which supplies blood to the head. Leading experts in treating the condition explain this.

In the late 1990s, researchers released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the attack eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of well-known individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are managed with abortive treatment alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.

The official guidelines need revising to reflect a