Excruciating Suffering: A Personal Struggle With the Puzzling Pain of Cluster Headaches
It began on a dreary weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sharp pain sprang behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As each class progressed, the discomfort eased and then returned with greater force. Multiple times that day I handed over a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried ibuprofen, but the agony remained unbearable.
The headaches appeared repeatedly that autumn, and once more in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the routine: aura in the shower, early pangs on the train, full-blown agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with intense pain around one eye that persists up to three hours.
Approximately one in 1,000 individuals suffer by the condition, and men are more often affected. Cluster headaches usually begin with sudden, excruciating pain around one eye that peaks within a short time and lasts for as long as three hours. Attacks occur in cycles, every day or several times a day, and are associated with tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic attacks, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than broken bones or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts during attacks; the number dropped to 4% when they were pain-free.
One patient, in her seventies, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her adolescence, like several triggers, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her family often interpreted her attacks as intoxicated behavior. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, in part due to absences during episodes. Her breakthrough diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan life around unpredictable attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The earliest description of headache originates from the Mesopotamians in antiquity,” write experts in a publication on the subject. They linked the ailment to an malevolent entity who attacked his sufferers' heads.
Ancient medical texts propose unusual treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more folk remedies.
It was a European physician who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only formally classified by global medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In 1998, researchers published the findings of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a prominent journal, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being diagnosed in recently, after a doctor looked up his symptoms.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before diagnosing cluster headaches. A thorough history is essential: on which side do symptoms occur? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as redness, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to specialist centers. But many first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen treatment and drugs until the episode eased.
National guidance on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which reportedly soothes the bouts of some people.
But leading specialists believe the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles with infrequent episodes are managed with abortive therapy only. Longer or more severe periods require preventives such as verapamil, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.
The official guidance need revising to reflect a
