Unbearable Agony: My Struggle With the Mysterious Pain of Cluster Headaches
It was a dreary Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense pain sprang behind my right eye. It was followed by quick stabs, like lightning bolts. As the school day progressed, the pain eased and then came back with greater intensity. Four times that day I handed over a teaching assistant with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks appeared repeatedly that fall, and once more in the spring, soon forming an yearly pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: aura in the morning, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with intense discomfort behind one eye that persists up to three hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches usually start with abrupt, severe pain around a single eye that peaks within a short time and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are associated with tearing eyes, drooping eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; others have chronic attacks, defined by the lack of extended pain-free periods.
What connects patients is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm during attacks; the number fell to 4% when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through her youth. Drinking in her teens, similar to many causes, made things more intense. After having sherry at her graduation party, she remembers barely being able to see on the bus home.
Her relatives often mistook her attacks as intoxicated behavior. Understanding finally came from her parent and then from her husband, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national hospital.
Nevertheless, the inability to plan daily activities around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the subject. They attributed the disease to an malevolent spirit who afflicted his sufferers' heads.
Ancient healing texts propose unusual 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 folk cures.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only formally classified by international medical societies in 1988. From the 1960s to the 1990s, they were thought to be caused by a problem with a key artery that delivers blood to the brain. Leading specialists in diagnosing the condition explain this.
In the late 1990s, researchers released the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they felt better.
Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in recently, after a physician researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed history is essential: on which side do signs occur? For how long? What season? Are there triggers, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.
National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication delivered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly helps manage the bouts of some people.
But leading specialists argue the guidance need revising to reflect a clearer treatment process and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional attacks are handled with abortive therapy alone. Longer or more severe bouts require preventives such as verapamil, sometimes combined with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the skull where the pain is that reduces nerve signals.
The official guidance need revising to reflect a
