Excruciating Pain: My Fight Against the Enigmatic Pain of Cluster Headaches
It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden sensation sprang behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As each class progressed, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unrelenting.
The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly cycle. September and October were the most severe, then the late winter. I could anticipate the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by 9.30am. In late 2019, a doctor eventually sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often begin with severe pain around one eye that persists for several hours.
About 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks typically begin with sudden, severe 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 tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during bouts; the number dropped to 4% when they were not in pain.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having 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 behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was dismissed from one job, in part due to absences during episodes. Her definitive identification came in the early 2000s at a national hospital.
Still, the failure to plan daily activities around unpredictable pain took its effect. She particularly hated being unable to plan social events, being seen as unreliable as a co-worker, 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 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 facility.
Headaches have been described throughout the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent entity who attacked his sufferers' heads.
Ancient healing texts propose unusual remedies for what some experts would describe as a headache disorder. In the medieval times, migraine was identified as a distinct disorder, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “afflicted with a very severe headache occurring and vanishing each day at fixed hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel which supplies blood to the head. Leading experts in diagnosing the disorder explain this.
In the late 1990s, scientists released the findings of a study for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains slow. Jamie Charteris's attacks began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in 2014, after a physician looked up his complaints.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What season? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable therapies.
A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she has been free from an episode since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and medication until the episode eased.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently helps manage the attacks of well-known people.
But leading neurologists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Short bouts with occasional episodes are handled with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The national guidance need updating to reflect a
