Excruciating Agony: A Personal Struggle With the Mysterious Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. It was followed by quick stabs, reminiscent of electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches typically begin with severe pain behind a single eye that persists up to three hours.
About 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches typically start with abrupt, severe pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. I have an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, defined by the lack of long pain-free periods.
What unites patients is the severity. One study scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things more intense. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist neurology center.
Nevertheless, the failure to organize daily activities around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a facility.
Headaches have been described throughout history. “The first account of headache originates from the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Ancient healing records suggest bizarre treatments for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate disorder, with therapies including bloodletting to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “afflicted with a very intense headache happening and vanishing daily at fixed hours”.
The disorder were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Leading experts in treating the disorder note this.
In 1998, scientists released the results of a study for which they had induced attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had multiple operations before finally being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs appear? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm advisor talked them through oxygen treatment and medication until the attack passed.
Official guidance on management advise that sufferers are offered high-dose oxygen and/or a specific drug delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently helps manage the attacks of well-known individuals.
But leading specialists argue the guidance need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with occasional episodes are handled with acute therapy alone. Longer or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
