Full-Blown Agony: My Struggle Against the Enigmatic Suffering of Cluster Headaches
It began on a dreary weekday morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a intense sensation bloomed behind my one eye. It was followed by quick jolts, reminiscent of lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.
The attacks appeared frequently that autumn, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with severe discomfort around one eye that lasts for three hours.
About one in 1,000 individuals suffer by the condition, and males are more often affected. Cluster headaches typically start with abrupt, excruciating agony focused on a single eye that peaks within a short time and continues for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in periodic cycles; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What connects sufferers is the intensity. One study scored the pain at 9.7 out of 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes began when she was two. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her adolescence, similar to many triggers, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the bus home.
Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in 2002 at a national hospital.
Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as flaky 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 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 documented across history. “The earliest account of headache originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent entity who afflicted his sufferers' heads.
Ancient healing texts propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more folk cures.
It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
The disorder were only officially recognised by international headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a major artery which delivers blood to the brain. Prominent experts in diagnosing the condition note this.
In 1998, scientists released the findings of a study for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in agony,” one says. He proceeds by eliminating other common head pain conditions, such as migraine, before diagnosing the disorder. A thorough history is crucial: on which part of the head do symptoms appear? For how much time? What season? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. She believes dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in 2021; a calm advisor guided them through oxygen treatment and drugs until the attack passed.
Official guidance on treatment advise that patients are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.
But consultant neurologists argue the official guidelines need revising to reflect a more defined treatment process and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The duration of the cycle dictates the treatment.” Brief bouts with infrequent episodes are handled with acute treatment alone. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a greater occipital nerve block during a bout – an injection into the area of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
