🔗 Share this article

It was a overcast Monday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation erupted behind my one eye. Then came quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the pain remained unrelenting.

The headaches returned repeatedly that autumn, and again in the spring, soon establishing an annual cycle. September and October were the worst, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on pain in class by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition typically start with severe pain around one eye that lasts up to three hours.

About one in 1,000 people suffer by the condition, and males are more often affected. Cluster headaches usually start with abrupt, excruciating pain focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, finds this understandable. Her attacks began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.

Her relatives often mistook her episodes as drunken behavior. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a specialist hospital.

Still, the inability to organize daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a portable toilet.

---

Headaches have been described across history. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil spirit who afflicted his victims' heads.

Historical medical records suggest bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including bloodletting to other, more folk cures.

It was a Dutch doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing daily at specific hours”.

Cluster headaches were only officially classified by international headache committees in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the head. Leading experts in treating the disorder note this.

In the late 1990s, scientists published the findings of a study for which they had induced attacks in patients and monitored the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they felt better.

In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before finally being diagnosed in 2014, after a doctor researched his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given inadequate treatments.

Dorothy Chapman, 78, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. 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 advisor guided them through oxygen therapy and medication until the attack passed.

Official guidance on treatment recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of well-known people.

But leading neurologists argue the guidance need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. Longer or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that reduces nerve signals.

The national guidelines need revising to reflect a