Unbearable Agony: My Battle With the Mysterious Suffering of Cluster Headaches
It began on a overcast 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 sprang behind my right eye. It was followed by rapid shocks, like lightning bolts. As each class came and went, the discomfort eased and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unrelenting.
The attacks returned frequently that autumn, and again in spring, soon establishing an yearly pattern. September and October were the most severe, then the late winter. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-on pain in the classroom by 9.30am. In 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with severe discomfort around a single eye that persists for three hours.
About one in 1,000 people suffer by the condition, and males are more often diagnosed. Cluster headaches usually begin with abrupt, excruciating pain around a single eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, characterized by the absence of long symptom-free periods.
What unites sufferers is the intensity. One research paper scored the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered 64% of cluster patients experienced suicidal thoughts during attacks; the figure fell to four percent when they were not in pain.
One patient, 74, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through her youth. Drinking in her adolescence, like many triggers, made things more intense. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took clerical work after moving, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a national neurology center.
Still, the failure to plan life around erratic attacks took its toll. She especially disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented across the ages. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the disease to an evil entity who attacked his sufferers' heads.
Ancient healing texts propose bizarre treatments for what some experts would describe as a migraine. In the middle ages, migraine was identified as a distinct disorder, with therapies including herbal concoctions to other, more superstitious remedies.
It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very severe headache occurring and disappearing daily at specific hours”.
Cluster headaches were only officially recognised by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were believed to be caused by a issue with a key blood vessel which delivers blood to the brain. Leading experts in treating the disorder note this.
In 1998, researchers published the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, published in a major journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a deactivation when they recovered.
In spite of such progress, identification remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his complaints.
Neurologists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other common headache disorders, such as migraine, before diagnosing the disorder. A detailed patient history is crucial: on which part of the head do symptoms appear? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be sent to specialist centers. But many first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from the condition for the majority of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes dentists still need greater education. When another patient sought help from a support group, it was Chapman who replied. I remember calling a helpline during an bout in 2021; a reassuring advisor guided them through oxygen therapy and drugs until the episode passed.
National guidance on management advise that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of well-known people.
But leading specialists believe the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, the treatment window is critical: “The length of the cycle dictates the approach.” Brief cycles 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. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the skull where the discomfort is that reduces nerve activity.
The national guidance need revising to reflect a
