Unbearable Suffering: My Struggle With the Enigmatic Pain of Cluster Headache Syndrome
It began on a gloomy Monday morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sharp pain sprang behind my right eye. This was followed by quick jolts, similar to electric shocks. As each class progressed, the discomfort subsided and then returned with greater force. Four times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took ibuprofen, but the pain remained unrelenting.
The attacks returned frequently that autumn, and once more in spring, soon forming an annual pattern. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the morning, early pangs on the train, full-on agony in class by 9.30am. In late 2019, a doctor eventually referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition often start with intense pain around one eye that persists up to three hours.
About one in 1,000 people are affected by the disorder, and males are more often diagnosed. Attacks usually start with sudden, severe pain focused on one eye that reaches its peak within a short time and lasts for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects patients is the intensity. One study rated the pain at 9.7 out of 10, higher than bone fractures or other conditions. Another found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, finds this understandable. Her attacks started when she was a toddler. “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 her youth. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the bus home.
Her family often mistook her episodes as intoxicated episodes. Support eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Still, the failure to organize life around unpredictable pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation 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 described across the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Ancient healing records propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with therapies including bloodletting to other, more superstitious remedies.
It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he describes a patient “afflicted with a very intense headache happening and disappearing daily at specific hours”.
The disorder were only officially classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.
In the late 1990s, researchers released the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, featured 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 felt better.
Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Neurologists say wait times in diagnosing and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as redness, sagging eyelids and stuffy nose help confirm the diagnosis. Once identified, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, 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 twenties, she had her molars extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater education. When a sufferer sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a calm advisor guided me through oxygen therapy and drugs until the attack passed.
National guidance on treatment recommend that sufferers are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the attacks of well-known people.
But consultant neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the cycle determines the approach.” Brief bouts with occasional attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the area of the skull where the discomfort is that decreases nerve signals.
The national guidelines need revising to reflect a
