Excruciating Pain: A Personal Struggle With the Puzzling Pain of Cluster Headaches

It was a dreary weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a sharp sensation erupted behind my right eye. This was followed by rapid jolts, reminiscent of lightning bolts. As each class came and went, the pain eased and then came back with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to soak my face with cold water. I took paracetamol, but the agony remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort around one eye that lasts up to several hours.

About one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with abrupt, excruciating pain focused on 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 tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the absence of long symptom-free periods.

What unites sufferers is the severity. One study scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts during bouts; the number fell to 4% when they were not in pain.

One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, like many triggers, made things more intense. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her condition. She was dismissed from one job, partly due to time off during episodes. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Nevertheless, the inability to organize daily activities around unpredictable pain took its effect. She particularly hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.

Headaches have been described throughout history. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.

Ancient medical texts suggest bizarre remedies for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at fixed hours”.

The disorder were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major artery which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and monitored the episodes in a imaging machine. The data, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.

Neurologists say wait times in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as tension-type headache, before confirming the disorder. A detailed patient history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But many first arrive to A&E or are given inadequate therapies.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the attack passed.

National guidance on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the bouts of some individuals.

But leading specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.

The official guidelines need updating to reflect a