Excruciating Agony: My Struggle Against the Puzzling Pain of Cluster Headaches
It began on a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation sprang behind my right eye. It was followed by quick jolts, like electric shocks. As the school day progressed, the pain subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The headaches returned frequently that fall, and once more in the spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was diagnosed with cluster headaches.
This condition typically begin with intense discomfort behind one eye that persists up to three hours.
About 1 in 1000 individuals suffer by the condition, and males are more often affected. Attacks usually begin with sudden, severe agony focused on one eye that peaks within a short time and lasts for up to three hours. Attacks come in clusters, daily or multiple times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in periodic cycles; others have continuous cluster headaches, characterized by the absence of extended pain-free periods.
What unites sufferers is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients reported thoughts of self-harm during bouts; the figure dropped to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like several causes, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often interpreted her episodes as drunken behavior. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in the early 2000s at a specialist neurology center.
Still, the failure to plan daily activities around unpredictable attacks took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.
Historical medical records propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was recognised as a distinct condition, with treatments including herbal concoctions to other, more superstitious cures.
It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.
The disorder were only officially classified by international headache committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery that delivers blood to the brain. Leading experts in treating the disorder note this.
In the late 1990s, researchers published the results of a study for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, featured in a prominent journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. One man's symptoms started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in recently, after a physician researched his complaints.
Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and low, but not in severe pain,” a doctor says. He works by eliminating other primary head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once identified, patients may be sent to dedicated clinics. But many first arrive to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has suffered from the condition for most of her life, although she hasn't had an attack since 2016. When she was in her 20s, she had her teeth pulled because dentists misunderstood her symptoms. She thinks dentists still need much more education. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an attack in early 2021; a reassuring volunteer talked them through oxygen therapy and medication until the episode passed.
National guidelines on treatment advise that sufferers are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the bouts of well-known individuals.
But consultant neurologists believe the official guidelines need updating to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the cycle dictates the approach.” Brief bouts with occasional episodes are managed with abortive therapy alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the pain is that reduces nerve activity.
The national guidelines need updating to reflect a
