Excruciating Pain: My Fight With the Mysterious Pain of Cluster Headaches
It was a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain sprang behind my right eye. This was followed by quick stabs, like electric shocks. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the school bathroom to douse my face with cold water. I took aspirin, but the pain remained unbearable.
The headaches returned frequently that autumn, and once more in spring, soon forming an annual cycle. The autumn months were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the commute, full-blown agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with severe pain behind one eye that lasts up to three hours.
About one in 1,000 people are affected by the condition, and men are more frequently diagnosed. Cluster headaches usually start with sudden, excruciating pain focused on one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. There exists an episodic type, which arrives in periodic cycles; others have continuous attacks, characterized by the lack of extended symptom-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 other conditions. A separate discovered 64% of cluster patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her adolescence, similar to several causes, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often mistook her episodes as intoxicated episodes. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Still, the inability to organize life around erratic attacks took its toll. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Historical medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk cures.
It was a European physician who provided the first comprehensive account of a cluster headache. In his medical observations, he describes a patient “afflicted with a very intense headache happening and vanishing daily at specific hours”.
The disorder were only formally recognised by international headache societies in 1988. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the brain. Prominent experts in treating the condition note this.
In 1998, researchers published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.
In spite of such progress, diagnosis remains slow. Jamie Charteris'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 operations before eventually being diagnosed in 2014, after a doctor looked up his complaints.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars extracted because dentists misunderstood her pain. She believes dentists still need greater awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked me through oxygen treatment and drugs until the episode passed.
Official guidelines on treatment advise that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.
But leading specialists argue the guidance need updating to reflect a more defined clinical process and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The length of the cycle dictates the treatment.” Short bouts with occasional attacks are managed with abortive therapy alone. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the pain is that reduces nerve activity.
The official guidance need updating to reflect a
