🔗 Share this article

It began on a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense pain sprang behind my right eye. This was followed by rapid stabs, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.

The headaches appeared frequently that fall, and once more in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with intense discomfort around a single eye that lasts up to three hours.

About 1 in 1000 individuals are affected by the condition, and males are more often affected. Attacks typically begin with abrupt, excruciating agony around a single eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Drinking in her adolescence, like many causes, made things more intense. After having sherry at her school leaving party, she recalls hardly being able to see on the bus home.

Her family often mistook her attacks as intoxicated episodes. Support eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the failure to plan life around erratic pain took its toll. She particularly 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 incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.

---

Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the topic. They attributed the ailment to an malevolent entity who afflicted his victims' heads.

Historical healing records propose bizarre treatments for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more folk cures.

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

The disorder were only officially recognised by international headache committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In the late 1990s, researchers published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a major 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 recovered.

Despite such progress, identification remains slow. One man's symptoms started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being diagnosed in recently, after a physician looked up his complaints.

Neurologists say wait times in diagnosis and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A detailed history is essential: on which part of the head do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. The author recalls calling a helpline during an attack in early 2021; a calm advisor guided me through oxygen therapy and medication until the attack passed.

National guidelines on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But leading neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is critical: “The length of the bout determines the treatment.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a