Unbearable Agony: My Fight Against the Puzzling Suffering of Cluster Headaches

It was a overcast Monday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sharp sensation erupted behind my one eye. This was followed by rapid shocks, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with increased intensity. Four times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I tried aspirin, but the pain remained unbearable.

The headaches appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the commute, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that lasts for three hours.

Approximately one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches usually begin with sudden, severe agony focused on a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in periodic cycles; others have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts during bouts; the figure dropped to four percent when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, like many causes, made things worse. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.

Her family often interpreted her attacks as drunken behavior. Support finally came from her father and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist neurology center.

Nevertheless, the failure to plan life around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't appreciate 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 throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his sufferers' heads.

Historical medical texts propose unusual remedies for what modern observers would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a Dutch physician who provided the initial comprehensive account of a cluster headache. In his medical observations, he describes a patient “suffering with a very intense headache happening and vanishing each day at fixed hours”.

Cluster headaches were only formally classified by global headache committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent specialists in treating the disorder explain this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, published in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, 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”. GPs thought he had a sinus issue; he had multiple operations before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms appear? For how long? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly soothes the attacks of some people.

But consultant specialists argue the guidance need revising to reflect a clearer clinical process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short cycles with occasional episodes are handled with abortive treatment only. Longer or more severe bouts require preventative medications 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 side of the skull where the pain is that decreases nerve signals.

The official guidance need revising to reflect a