Unbearable Pain: A Personal Fight With the Puzzling Suffering of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense sensation sprang behind my right eye. Then came quick jolts, like electric shocks. As each class came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I took ibuprofen, but the agony remained unbearable.
The attacks appeared repeatedly that autumn, and once more in the spring, soon forming an annual pattern. The autumn months were the worst, then February and March. I could predict the routine: aura in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition often start with intense pain around one eye that persists up to three hours.
About 1 in 1000 individuals suffer by the disorder, and males are more often affected. Attacks usually begin with sudden, excruciating pain focused on one eye that peaks within minutes and continues for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal cycles; others have chronic attacks, characterized by the absence of long pain-free periods.
What connects patients is the intensity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found 64% of cluster patients reported thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several causes, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often mistook her attacks as drunken episodes. Support eventually came from her parent and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.
Nevertheless, the inability to plan life around erratic attacks took its toll. She especially disliked 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 freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across history. “The first account of headache originates from the Mesopotamians in 4000BC,” write authors in a book on the subject. They attributed the ailment to an evil entity who afflicted his victims' heads.
Ancient healing texts suggest unusual treatments for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.
The disorder were only formally recognised by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a major blood vessel which delivers blood to the head. Leading experts in treating the condition note this.
In the late 1990s, scientists published the results of a research project for which they had induced attacks in patients and monitored the episodes in a brain scanner. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
Despite such advances, diagnosis remains slow. One man's symptoms started in the 1980s and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician looked up his complaints.
Specialists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other primary head pain conditions, such as migraine, before diagnosing cluster headaches. A detailed history is essential: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But a lot of first go to emergency rooms or are given inadequate therapies.
A charity trustee, 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 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a support line during an bout in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.
National guidance on management recommend that patients are offered high-flow oxygen therapy and/or a specific medication delivered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But leading neurologists believe the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is everything: “The duration of the cycle determines the treatment.” Brief cycles with infrequent episodes are managed with acute treatment alone. Longer or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the area of the head where the pain is that decreases nerve signals.
The national guidelines need updating to reflect a
