Unbearable Suffering: A Personal Fight Against the Enigmatic Suffering of Cluster Headaches

It was a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sudden sensation sprang behind my right eye. This was followed by quick shocks, reminiscent of electric shocks. As each class came and went, the pain eased and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I took paracetamol, but the agony remained unrelenting.

The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual cycle. September and October were the worst, then the late winter. I could anticipate the routine: a warning sensation in the morning, early pangs on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition typically start with severe pain behind one eye that lasts up to several hours.

Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently affected. Cluster headaches usually start with abrupt, excruciating agony around a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number dropped to 4% when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks 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 her youth. Alcohol in her adolescence, similar to many causes, made things more intense. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as intoxicated episodes. Understanding finally came from her father and then from her husband, Rod. “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 dismissed from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a national neurology center.

Still, the failure to plan life around unpredictable pain took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing texts suggest unusual remedies for what modern observers would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.

Cluster headaches were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the head. Prominent experts in treating the disorder note this.

In 1998, researchers published the findings of a study for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a modelling 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 doctor researched his symptoms.

Neurologists say delays in diagnosis and managing happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to A&E or are given unsuitable treatments.

A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a support group, it was she who responded. The author recalls calling a support line during an attack in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

Official guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer treatment pathway and help GPs avoid misprescribing. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with occasional attacks are managed with acute therapy alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that decreases nerve activity.

The national guidelines need revising to reflect a