Unbearable Pain: A Personal Struggle Against the Puzzling Suffering of Cluster Headaches
It was a dreary Monday in the morning in September 2016. I was working as a educator, attempting to manage a new group of students, when a sudden pain erupted behind my right eye. This was followed by rapid stabs, like electric shocks. As the school day progressed, the pain subsided and then came back with increased force. Multiple 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 pain remained unbearable.
The headaches returned frequently that autumn, and again in spring, soon forming an yearly pattern. September and October were the worst, then February and March. I could predict the pattern: a warning sensation in the shower, early twinges on the train, full-on pain in class by mid-morning. In late 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with intense discomfort behind one eye that persists for several hours.
About one in 1,000 individuals suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have an episodic type, which occurs in seasonal cycles; some patients have chronic attacks, defined by the absence of long symptom-free periods.
What connects patients is the intensity. One study rated the sensation at 9.7 out of 10, more severe than broken bones or pancreatitis. Another discovered 64% of cluster headache patients reported thoughts of self-harm amid bouts; the number fell to four percent when they were not in pain.
One patient, 74, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, like many causes, made things worse. After having sherry at her school leaving party, she recalls hardly being able to see on the transport home.
Her family often interpreted her attacks as drunken behavior. Understanding finally came from her father and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the inability to plan life around erratic attacks took its effect. She particularly disliked being unable to plan outings, being seen as unreliable as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.
Headaches have been described across history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Ancient healing texts suggest bizarre remedies for what some experts would classify as a migraine. In the medieval times, severe headache was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.
It was a Dutch physician who provided the first detailed account of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially recognised by global medical committees in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in treating the disorder explain this.
In 1998, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the episodes in a imaging machine. The data, featured 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 reduction when they recovered.
In spite of such advances, identification remains delayed. Jamie Charteris's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being correctly identified in 2014, after a physician researched his symptoms.
Specialists say delays in diagnosis and treatment occur because patients are seldom seen mid-attack. “You're tired and low, but not in agony,” a doctor says. He proceeds by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A detailed patient history is crucial: on which side do signs occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific characteristics such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars pulled because dental professionals misunderstood her symptoms. She thinks dentists still need greater awareness. When a sufferer sought help from a charity, it was Chapman who responded. I remember calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the attack eased.
Official guidelines on treatment recommend that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or opioids should be used. Preventive options include verapamil, which apparently soothes the attacks of some individuals.
But consultant neurologists argue the official guidelines need revising to reflect a clearer treatment process and help general practitioners avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Brief cycles with infrequent attacks are managed with acute treatment alone. Longer or more severe periods require preventives such as verapamil, sometimes paired 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 discomfort is that decreases nerve signals.
The national guidelines need updating to reflect a
