Unbearable Pain: A Personal Fight Against the Mysterious Pain of Cluster Headaches

It was a dreary weekday in the morning in September 2016. I worked as a educator, attempting to manage a new class, when a sudden pain erupted behind my one eye. Then came quick stabs, like lightning bolts. As each class came and went, the discomfort subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.

The attacks appeared repeatedly that autumn, and again in the spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headaches.

This condition often start with severe discomfort around one eye that lasts for several hours.

About 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches typically begin with sudden, severe agony around one eye that peaks within minutes and continues for up to three hours. Attacks come in clusters, every day or several 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 continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.

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

Nevertheless, the inability to organize life around erratic attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It steals from 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 documented throughout history. “The earliest account of headache originates from the Mesopotamians in antiquity,” write authors in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.

Historical medical texts propose bizarre treatments for what modern experts would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.

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

Cluster headaches were only officially classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery that delivers blood to the brain. Prominent experts in treating the condition explain this.

In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.

In spite of such progress, identification remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before finally being diagnosed in recently, after a physician researched his complaints.

Neurologists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other primary headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms 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 verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But many first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches 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 dental professionals misinterpreted her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an attack in early 2021; a calm volunteer guided me through oxygen therapy and medication until the episode eased.

National guidelines on treatment recommend that patients are offered high-dose oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists believe the official guidelines need updating to reflect a clearer clinical process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Short bouts with occasional episodes are managed with acute treatment alone. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.

The national guidelines need updating to reflect a