Unbearable Agony: My Battle Against the Mysterious Pain of Cluster Headache Syndrome
It began on 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 sensation bloomed behind my right eye. This was followed by quick shocks, similar to electric shocks. As the school day progressed, the pain subsided and then returned with greater intensity. Four times that day I handed over a colleague with worksheets and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The attacks appeared repeatedly that autumn, and again in the spring, soon establishing an annual pattern. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally referred me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches often begin with severe discomfort behind a single eye that persists up to three hours.
About one in 1,000 individuals suffer by the disorder, and males are more frequently diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic cluster headaches, characterized by the lack of extended symptom-free periods.
What connects sufferers is the severity. One study scored the pain at 9.7 out of 10, higher than broken bones or other conditions. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid attacks; the figure fell to 4% when they were not in pain.
Val Hobbs, in her seventies, a chronic sufferer from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, similar to several triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often concealed her condition. She was dismissed from one job, partly due to absences during attacks. Her definitive identification came in the early 2000s at a specialist hospital.
Nevertheless, the failure to organize life around erratic pain took its effect. She particularly hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She remembers obtaining tickets for a significant 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 topic. They attributed the disease to an evil entity who attacked his sufferers' heads.
Historical healing records propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more folk cures.
It was a European doctor who provided the initial detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache occurring and disappearing each day at fixed hours”.
Cluster headaches were only officially classified by international headache societies in the late 1980s. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading experts in treating the disorder explain this.
In the late 1990s, scientists released the findings of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, featured in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple operations before eventually being correctly identified in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.
A charity trustee, 78, 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 teeth pulled because dentists misunderstood her pain. She thinks dentists still need greater awareness. When a sufferer sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen therapy and medication until the episode eased.
National guidance on management recommend that sufferers are offered high-flow oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the bouts of well-known people.
But consultant specialists argue the official guidelines need revising to reflect a clearer clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle dictates the approach.” Brief bouts with infrequent attacks are handled with acute treatment only. More prolonged or more severe periods require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the area of the head where the discomfort is that reduces nerve signals.
The official guidance need revising to reflect a
