Excruciating Agony: My Struggle Against the Mysterious Pain of Cluster Headache Syndrome
It began on a dreary Monday in the morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain erupted behind my right eye. Then came quick jolts, similar to electric shocks. As the school day came and went, the discomfort eased and then returned with increased force. Multiple times that day I handed over a colleague with activities and hurried to the school bathroom to soak my face with cold water. I took paracetamol, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with severe pain behind a single eye that lasts for several hours.
About 1 in 1000 individuals suffer by the disorder, and men are more frequently diagnosed. Cluster headaches typically start with abrupt, excruciating agony around one eye that peaks within a short time 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, sagging eyelids or facial sweating. I have an episodic type, which arrives in seasonal cycles; some patients have continuous attacks, characterized by the absence of extended pain-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.
One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often interpreted her episodes as drunken behavior. Support eventually came from her father and then from her husband, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after moving, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in the early 2000s at a national hospital.
Nevertheless, the inability to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It steals from you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across the ages. “The earliest description of headache originates from the Mesopotamians in antiquity,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.
Historical healing texts suggest unusual remedies for what some experts would classify as a migraine. In the middle ages, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more folk cures.
It was a Dutch doctor who provided the first detailed description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing daily at fixed hours”.
Cluster headaches were only formally recognised by international medical societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in diagnosing the condition explain this.
In the late 1990s, scientists published the findings of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The results, 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.
Despite such advances, diagnosis remains slow. One man's symptoms began in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before finally being diagnosed in recently, after a doctor looked up his complaints.
Specialists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache conditions, such as tension-type headache, before diagnosing cluster headaches. A detailed patient history is essential: on which part of the head do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain characteristics such as tearing, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for the majority of her life, although she hasn't had an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was she who responded. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen treatment and medication until the episode passed.
National guidance on management advise 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. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known people.
But consultant neurologists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the approach.” Brief bouts with infrequent episodes are managed with abortive treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve activity.
The official guidance need revising to reflect a