🔗 Share this article

It began on a dreary Monday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a sudden sensation erupted behind my right eye. Then came rapid stabs, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cold water. I tried aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.

Cluster headaches often start with intense pain around a single eye that lasts up to several hours.

Approximately 1 in 1000 people suffer by the disorder, and men are more frequently diagnosed. Cluster headaches usually begin with abrupt, severe agony around a single eye that peaks within minutes and continues for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. I have the episodic form, which arrives in periodic cycles; others have continuous attacks, defined by the lack of long pain-free periods.

What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many triggers, made things worse. After drinking sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.

Still, the inability to organize life around erratic pain took its effect. She particularly 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 worst episodes. “It robs 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 portable toilet.

---

Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who attacked his victims' heads.

Ancient healing texts propose bizarre remedies for what modern observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.

The disorder were only formally recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery which delivers blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists published the results of a study for which they had induced attacks in patients and observed the episodes in a imaging machine. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

In spite of such advances, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has experienced the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But consultant neurologists believe the guidance need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the side of the skull where the pain is that reduces nerve signals.

The official guidance need updating to reflect a