Unbearable Suffering: My Struggle With the Enigmatic Pain of Cluster Headaches
It was a overcast Monday morning in September 2016. I worked as a educator, trying to settle a new group of students, when a sudden pain sprang behind my one eye. This was followed by rapid shocks, like lightning bolts. As the school day came and went, the pain subsided and then returned with greater force. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The headaches returned frequently that autumn, and once more in spring, soon establishing an annual cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often begin with intense pain behind a single eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the condition, and men are more frequently diagnosed. Attacks usually start with sudden, excruciating pain around a single eye that peaks within minutes and continues for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. There exists an episodic type, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was two. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she remembers barely being able to see on the bus home.
Her family often interpreted her attacks as intoxicated episodes. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be looked after by her family 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 remembers obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout the ages. “The first account of headache originates from the Mesopotamians in antiquity,” write authors in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.
Historical medical texts propose unusual treatments for what some observers would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with treatments including herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only formally classified by global medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Prominent specialists in diagnosing the condition note this.
In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common head pain conditions, such as migraine, before confirming the disorder. A detailed history is crucial: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She thinks dentists still need greater education. When another patient sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen treatment and drugs until the attack eased.
Official guidelines on treatment advise that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly soothes the bouts of some individuals.
But consultant neurologists believe the guidance need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout determines the approach.” Short bouts with infrequent attacks are handled with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a
