Unbearable Agony: A Personal Struggle With the Enigmatic Pain of Cluster Headaches
It was a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain sprang behind my right eye. It was followed by rapid shocks, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cold water. I tried aspirin, 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 twinges on the train, full-on agony in class by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically start with severe discomfort around a single eye that lasts up to three hours.
About one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually start with sudden, excruciating pain around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by red or watery eyes, sagging eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of extended symptom-free periods.
What connects patients is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid bouts; the figure dropped to 4% when they were not in pain.
One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.
Nevertheless, the failure to organize daily activities around unpredictable attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a co-worker, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It steals from you of the small 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 history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who attacked his sufferers' heads.
Historical healing texts propose unusual treatments for what some observers would classify as a headache disorder. In the middle ages, migraine was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially classified by global headache societies in 1988. From the 1960s 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 diagnosing the disorder note this.
In 1998, scientists released the results of a study for which they had induced cluster headaches in patients and monitored the episodes in a brain scanner. The results, featured in a prominent journal, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, identification remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which part of the head do signs appear? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced the condition for most of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and drugs until the attack eased.
National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of some people.
But leading specialists believe the official guidelines need revising to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with acute therapy alone. Longer or more intense bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that decreases nerve signals.
The national guidance need updating to reflect a
