Full-Blown Pain: A Personal Fight With the Puzzling Suffering of Cluster Headaches

It began on a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a intense sensation erupted behind my one eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and hurried to the staff bathroom to soak my face with cool water. I took aspirin, but the agony remained unrelenting.

The attacks returned repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early twinges on the commute, full-on pain in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition typically start with intense pain behind one eye that persists for three hours.

Approximately one in 1,000 individuals are affected by the disorder, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which occurs in periodic bouts; others have chronic attacks, defined by the absence of extended symptom-free periods.

What unites patients is the intensity. One study rated the pain at 9.7 out of 10, more severe than bone fractures or other conditions. A separate found a significant percentage of cluster patients reported suicidal thoughts during attacks; the number dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often interpreted her attacks as intoxicated episodes. Support eventually 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 clerical work after relocating, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in the early 2000s at a national hospital.

Still, the inability to organize life around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.

Headaches have been documented throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the ailment to an evil entity who attacked his victims' heads.

Historical medical texts suggest unusual treatments for what some observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from bloodletting to other, more superstitious remedies.

It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.

Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the results of a study for which they had triggered cluster headaches in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

In spite of such progress, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in recently, after a physician researched his symptoms.

Specialists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode eased.

Official guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the attacks of some people.

But consultant neurologists argue the guidance need revising to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with infrequent attacks are handled with acute therapy only. More prolonged or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a