Excruciating Pain: A Personal Struggle With the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a intense sensation sprang behind my right eye. It was followed by rapid jolts, reminiscent of lightning bolts. As each class progressed, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a colleague with worksheets and ran to the staff bathroom to douse my face with cool water. I took ibuprofen, but the pain remained unbearable.
The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly pattern. September and October were the worst, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown pain in the classroom by 9.30am. In 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense discomfort around one eye that lasts up to several hours.
About 1 in 1000 individuals suffer by the disorder, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on a single eye that reaches its peak within a short time and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the absence of long symptom-free periods.
What unites sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm amid attacks; the figure fell to four percent when they were not in pain.
Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Support eventually 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 hid her condition. She was fired from one job, in part due to time off during attacks. Her definitive identification came in 2002 at a national neurology center.
Still, the inability to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, 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 steals from you of the simple liberties 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 described across history. “The earliest account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient medical records propose bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was recognised as a separate disorder, with treatments including herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing daily at specific hours”.
The disorder were only officially recognised by international headache societies in 1988. 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 brain. Prominent experts in treating the condition explain this.
In 1998, researchers released the results of a study for which they had induced attacks in patients and observed the episodes in a brain scanner. 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 reduction when they recovered.
In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four operations before finally being correctly identified in recently, after a physician looked up his symptoms.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which side do symptoms appear? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misunderstood her symptoms. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of well-known individuals.
But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short cycles with occasional attacks are managed with acute treatment alone. Longer or more intense bouts require preventives such as verapamil, sometimes combined with corticosteroids. A significant number of 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 signals.
The national guidelines need revising to reflect a
