Full-Blown Suffering: My Fight Against the Puzzling Pain of Cluster Headaches
It was a overcast Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by rapid stabs, similar to electric shocks. As each class progressed, the pain subsided and then returned with greater force. Four times that day I handed over a teaching assistant with activities and hurried to the school bathroom to soak my face with cold water. I tried paracetamol, but the agony remained unbearable.
The attacks returned repeatedly that fall, and once more in spring, soon forming an yearly pattern. September and October were the most severe, then the late winter. I could anticipate the pattern: aura in the shower, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a GP finally sent me to a neurologist and I was diagnosed with cluster headaches.
Cluster headaches typically start with severe discomfort around a single eye that persists for several hours.
About 1 in 1000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are associated with tearing eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; others have continuous attacks, characterized by the absence of long symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.
One patient, 74, a long-term sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she remembers hardly being able to see on the bus home.
Her relatives often interpreted her episodes as intoxicated behavior. Support finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to time off during episodes. Her breakthrough diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an evil entity who afflicted his victims' heads.
Historical healing texts propose bizarre treatments for what some observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious cures.
It was a Dutch physician who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very intense headache happening and disappearing each day at specific hours”.
Cluster headaches were only officially classified by global medical societies in the late 1980s. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key artery which delivers blood to the brain. Leading specialists in treating the disorder explain this.
In the late 1990s, researchers released the results of a research project for which they had induced cluster headaches in patients and monitored the attacks in a brain scanner. The data, published in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
In spite of such advances, diagnosis remains slow. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say delays in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache disorders, such as tension-type headache, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable treatments.
A charity trustee, 78, has suffered from the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dental professionals misunderstood her pain. 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 early 2021; a reassuring volunteer guided me through oxygen therapy and medication until the episode passed.
National guidance on treatment advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which apparently soothes the bouts of well-known people.
But leading specialists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the cycle determines the approach.” Brief bouts with infrequent attacks are managed with abortive therapy only. More prolonged or more severe bouts require preventives such as verapamil, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a bout – an injection into the side of the skull where the discomfort is that decreases nerve activity.
The national guidance need revising to reflect a
