Unbearable Agony: My Fight With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in September 2016. I was working as a educator, attempting to manage a new class, when a sharp pain sprang behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day came and went, the pain eased and then returned with greater intensity. Four times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unbearable.
The headaches appeared frequently that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: aura in the morning, early pangs on the train, full-on pain in class by mid-morning. In 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often begin with intense pain behind a single eye that persists up to several hours.
Approximately one in 1,000 individuals suffer by the disorder, and men are more frequently diagnosed. Attacks typically start with abrupt, 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 multiple times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic cluster headaches, defined by the absence of long pain-free periods.
What unites sufferers is the severity. One research paper scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term patient from Wales, finds this understandable. Her attacks began when she was two. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to several triggers, made things more intense. After drinking alcohol at her graduation party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Support eventually came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, in part due to time off during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Nevertheless, the inability to organize life around unpredictable pain took its toll. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her children during the paralysis caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The first account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They linked the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical texts propose bizarre remedies for what some observers would classify as a migraine. In the middle ages, migraine was identified as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at specific hours”.
Cluster headaches were only formally recognised by international headache committees in the late 1980s. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the brain. Leading specialists in treating the disorder explain this.
In the late 1990s, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple operations before finally being correctly identified in 2014, after a physician looked up his complaints.
Specialists say delays in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He works by eliminating other primary headache conditions, such as tension-type headache, before diagnosing the disorder. A thorough history is crucial: on which side do signs appear? For how long? What season? Are there triggers, such as alcohol? Certain features such as redness, drooping eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated centers. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, 78, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her molars pulled because dental professionals misinterpreted her symptoms. She believes the dental profession still need greater awareness. When a sufferer sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the episode passed.
National guidance on management advise that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic options include verapamil, which reportedly helps manage the bouts of some people.
But consultant specialists believe the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the bout determines the treatment.” Short bouts with occasional attacks are managed with abortive treatment only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.
The national guidance need updating to reflect a
