Full-Blown Suffering: A Personal Struggle With the Mysterious Suffering of Cluster Headaches

It was a gloomy weekday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new class, when a sudden sensation sprang behind my one eye. Then came quick shocks, like electric shocks. As the school day came and went, the discomfort subsided and then returned with increased force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that autumn, and once more in the spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headaches.

This condition often begin with severe discomfort behind a single eye that persists for several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain around one eye that reaches its peak within a short time 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 facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the absence of extended pain-free periods.

What connects patients is the severity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.

One patient, 74, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to several triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her relatives often interpreted her episodes as intoxicated episodes. Understanding eventually 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 moving, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her definitive identification came in the early 2000s at a specialist neurology center.

Nevertheless, the inability to plan life around erratic pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a portable toilet.

Headaches have been described throughout the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Historical healing texts suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by global headache committees in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent experts in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major 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 felt better.

Despite such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.

Specialists say delays in diagnosing and treatment occur because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He proceeds by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A detailed history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She thinks dentists still need much more education. When another patient sought help from a charity, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor talked them through oxygen treatment and drugs until the episode passed.

Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The length of the cycle determines the approach.” Brief cycles with occasional attacks are managed with acute treatment only. More prolonged or more severe periods require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve signals.

The national guidelines need updating to reflect a