Excruciating Agony: My Fight With the Puzzling Suffering of Cluster Headaches
It was a dreary weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp sensation bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As each class progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the staff bathroom to douse my face with cool water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that fall, and again in spring, soon establishing an annual cycle. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was diagnosed with cluster headaches.
Cluster headaches typically start with intense discomfort around one eye that persists for three hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Attacks usually begin with sudden, excruciating agony around a single eye that peaks within a short time and continues for as long as three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm amid bouts; the number fell to four percent when they were pain-free.
One patient, 74, a long-term patient from Wales, finds this understandable. Her episodes began 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 deteriorated through childhood. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around erratic pain took its effect. She particularly hated being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They attributed the disease to an evil entity who attacked his sufferers' heads.
Ancient healing records suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, severe headache was recognised 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 “suffering with a very severe headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that delivers blood to the head. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The results, featured in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, identification remains slow. One man's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being diagnosed in recently, after a physician looked up his symptoms.
Neurologists say delays in diagnosing and managing occur because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” one says. He works by eliminating other common headache conditions, such as migraine, before confirming the disorder. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her molars extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and medication until the episode eased.
Official guidance on management recommend that patients are offered high-dose oxygen and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include verapamil, which reportedly helps manage the bouts of some people.
But consultant neurologists argue the official guidelines need updating to reflect a clearer clinical pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with infrequent episodes are handled with acute treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined 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 reduces nerve signals.
The national guidance need revising to reflect a
