Excruciating Suffering: A Personal Struggle With the Puzzling Pain of Cluster Headaches
It was a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. Then came quick stabs, similar to electric shocks. As the school day came and went, the pain subsided and then came back with increased intensity. Multiple 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 returned repeatedly that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could anticipate the routine: aura in the shower, early twinges on the train, full-blown agony in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headaches.
This condition typically start with intense discomfort behind one eye that persists up to three hours.
About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically start with sudden, excruciating pain around a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.
What unites patients is the severity. One study rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often hid her condition. She was fired from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the failure to organize life around erratic pain took its toll. She especially disliked being unable to plan outings, 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 simple freedoms 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 facility.
Headaches have been described across history. “The first account of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Historical healing records propose bizarre treatments for what modern experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate condition, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the first comprehensive description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in diagnosing the condition note this.
In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such progress, identification remains slow. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he underwent four surgeries before finally being correctly identified in 2014, after a physician researched his complaints.
Specialists say delays in diagnosis and managing happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” one says. He works by ruling out other common headache conditions, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do signs appear? For how much time? What season? Are there precipitating factors, such as certain foods? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen treatment and medication until the attack eased.
National guidelines on management advise that patients are offered high-dose oxygen and/or a anti-migraine medication administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include verapamil, which apparently soothes the bouts of some individuals.
But leading specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are handled with abortive treatment only. Longer or more severe periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the skull where the discomfort is that decreases nerve activity.
The national guidelines need revising to reflect a
