Excruciating Agony: My Struggle Against the Enigmatic Suffering of Cluster Headaches
It was a dreary Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp pain bloomed behind my right eye. This was followed by rapid shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with increased force. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the agony remained unbearable.
The headaches returned frequently that autumn, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the routine: aura in the morning, early twinges on the train, full-blown agony in the classroom by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was diagnosed with cluster headaches.
This condition often start with severe discomfort behind one eye that persists for three hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks usually begin with abrupt, excruciating agony around one eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, every day or multiple times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; some patients have continuous cluster headaches, defined by the lack of long pain-free periods.
What connects sufferers is the severity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her adolescence, like several triggers, made things worse. After drinking sherry at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.
Nevertheless, the inability 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 looked after by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small liberties we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been documented across the ages. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the subject. They attributed the disease to an malevolent entity who afflicted his victims' heads.
Ancient medical texts propose unusual treatments for what some experts would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with treatments including bloodletting to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially recognised by global headache committees in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the brain. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, researchers published the results of a research project for which they had induced attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such progress, diagnosis remains slow. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and managing happen because patients are rarely seen during an episode. “You're tired and low, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed patient history is essential: on which side do signs occur? For how much time? What time of year? Are there triggers, such as certain foods? Specific characteristics such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to dedicated clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her symptoms. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack passed.
National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the bouts of well-known people.
But leading specialists believe the official guidelines need revising to reflect a more defined treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Short cycles with occasional attacks are handled with acute treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the head where the discomfort is that reduces nerve signals.
The official guidelines need updating to reflect a
