Excruciating Agony: A Personal Battle With the Enigmatic Pain of Cluster Headaches
It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my one eye. This was followed by quick jolts, reminiscent of lightning bolts. As the school day progressed, the pain eased and then came back with increased intensity. Four times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and again in spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically begin with intense discomfort behind a single eye that lasts for three hours.
About one in 1,000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating pain around one eye that peaks within a short time and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous attacks, defined by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One research paper rated the sensation at 9.7 10, higher than bone fractures or other conditions. A separate found 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began 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. Alcohol in her adolescence, like many triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national neurology center.
Nevertheless, the failure to organize life around unpredictable attacks took its effect. She particularly hated 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 paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been described throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the subject. They linked the disease to an evil spirit who attacked his sufferers' heads.
Historical healing records propose unusual treatments for what modern observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct disorder, with treatments including bloodletting to other, more folk remedies.
It was a Dutch doctor who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at fixed hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a problem with a major blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder note this.
In 1998, scientists released the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, published in a major journal, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had four surgeries before eventually being diagnosed in recently, after a physician researched his symptoms.
Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're exhausted and depressed, but not in severe pain,” a doctor says. He proceeds by ruling out other primary headache disorders, such as tension-type headache, before diagnosing cluster headaches. A thorough patient history is crucial: on which part of the head do signs appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her pain. She believes dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm volunteer guided me through oxygen treatment and drugs until the episode passed.
National guidance on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication administered by nasal spray. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.
But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidelines need updating to reflect a
