Unbearable Suffering: My Struggle With the Mysterious Pain of Cluster Headaches
It was a gloomy Monday morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a intense sensation bloomed behind my right eye. It was followed by rapid stabs, like lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a colleague with activities and hurried to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unbearable.
The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly pattern. September and October were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early twinges on the train, full-blown pain in class by mid-morning. In late 2019, a doctor eventually referred me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches typically start with intense pain behind one eye that lasts for several hours.
Approximately 1 in 1000 individuals suffer by the disorder, and men are more often affected. Cluster headaches typically begin with sudden, severe pain around a single eye that reaches its peak within minutes and lasts for up to three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. There exists the episodic form, which arrives in seasonal cycles; others have continuous attacks, defined by the lack of long symptom-free periods.
What unites patients is the intensity. One study scored the pain at 9.7 10, more severe than bone fractures or other conditions. Another found a significant percentage of cluster patients experienced thoughts of self-harm during attacks; the number dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, 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 attributed to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things more intense. After having alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her episodes as drunken episodes. Understanding finally came from her father and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. 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 failure to organize daily activities around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a major concert, only to have an attack inside a facility.
Headaches have been documented throughout history. “The earliest account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the subject. They attributed the ailment to an malevolent spirit who attacked his victims' heads.
Ancient medical records propose unusual treatments for what some experts would classify as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies ranging from bloodletting to other, more superstitious remedies.
It was a European physician who provided the first detailed description of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by global medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, researchers published the results of a study for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The data, featured in a prominent medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such progress, diagnosis remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he underwent multiple surgeries before finally being correctly identified in recently, after a physician researched his symptoms.
Specialists say wait times in diagnosing and managing happen because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He works by eliminating other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first go to A&E or are given inadequate treatments.
A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. The author recalls calling a helpline during an attack in 2021; a calm advisor talked them through oxygen treatment and drugs until the episode eased.
Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include verapamil, which apparently soothes the attacks of well-known individuals.
But leading neurologists argue the official guidelines need updating to reflect a more defined treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the cycle dictates the treatment.” Brief bouts with occasional episodes are managed with acute therapy only. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired with corticosteroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the skull where the discomfort is that reduces nerve activity.
The official guidelines need updating to reflect a
