Excruciating Pain: My Battle With the Puzzling Suffering of Cluster Headaches
It was a overcast Monday morning in September 2016. I worked as a educator, attempting to manage a new group of students, when a sudden pain sprang behind my one eye. It was followed by quick shocks, reminiscent of electric shocks. As each class progressed, the discomfort subsided and then returned with greater intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cool water. I took aspirin, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and once more in spring, soon forming an yearly cycle. September and October were the worst, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically begin with intense pain around a single eye that lasts for three hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often affected. Attacks typically start with sudden, excruciating pain focused on one eye that peaks within a short time and lasts for as long as three hours. Attacks come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which occurs in periodic bouts; others have chronic cluster headaches, characterized by the lack of long symptom-free periods.
What connects sufferers is the intensity. One study rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts during attacks; the figure dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many triggers, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her attacks as intoxicated episodes. Support eventually came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the failure to plan daily activities around erratic attacks took its toll. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms 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 portable toilet.
Headaches have been documented across the ages. “The first account of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They attributed the disease to an evil entity who afflicted his victims' heads.
Ancient healing records propose unusual remedies for what some experts would describe as a headache disorder. In the middle ages, migraine was identified as a distinct condition, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially classified by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Prominent experts in diagnosing the disorder explain this.
In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and monitored the attacks in a imaging machine. The results, published in a major medical publication, showed increased activity of the hypothalamus, 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 delayed. Jamie Charteris's attacks began in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Neurologists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her symptoms. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an attack in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the attack passed.
National guidance on management advise that patients are offered high-flow oxygen and/or a specific medication delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But leading specialists argue the official guidelines need revising to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are managed with acute treatment only. More prolonged or more intense bouts 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 pain is that reduces nerve activity.
The official guidance need revising to reflect a
