Excruciating Pain: My Struggle With the Enigmatic Suffering of Cluster Headache Syndrome
It was a overcast weekday morning in the autumn of 2016. I worked as a teacher, attempting to manage a new class, when a sudden pain erupted behind my right eye. It was followed by rapid jolts, like lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I left a teaching assistant with activities and hurried to the staff bathroom to douse my face with cool water. I took ibuprofen, but the agony remained unrelenting.
The headaches appeared frequently that autumn, and again in spring, soon establishing an annual pattern. September and October were the most severe, then the late winter. I could predict the pattern: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with intense pain around one eye that lasts for three hours.
About 1 in 1000 individuals suffer by the condition, and men are more frequently diagnosed. Attacks typically start with abrupt, excruciating agony focused on a single eye that peaks within a short time and lasts for up to three hours. Episodes come in clusters, every day or several times a day, and are accompanied by red or watery eyes, drooping eyelids or face sweating. There exists an episodic type, which occurs in periodic cycles; some patients have continuous attacks, defined by the lack of extended symptom-free periods.
What connects sufferers is the intensity. One research paper scored the sensation at 9.7 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients reported thoughts of self-harm amid bouts; the figure dropped to four percent when they were not in pain.
Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her condition worsened through her youth. Alcohol in her teens, like many triggers, made things more intense. After drinking alcohol at her school leaving party, she remembers barely being able to see on the bus home.
Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was fired from one job, in part due to time off during attacks. Her breakthrough diagnosis came in 2002 at a national neurology center.
Still, the inability to organize daily activities around erratic pain took its effect. She especially hated being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the simple liberties we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented across the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the ailment to an evil spirit who attacked his victims' heads.
Historical medical texts suggest unusual remedies for what modern observers 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 cures.
It was a European physician who provided the first comprehensive description of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.
The disorder were only officially classified by global medical 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 major blood vessel which delivers blood to the brain. Leading experts in diagnosing the disorder explain this.
In 1998, scientists released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a brain scanner. The data, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
Despite such progress, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.
Specialists say wait times in diagnosing and managing occur because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before diagnosing cluster headaches. A detailed patient 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? Specific features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But many first go to emergency rooms or are given unsuitable therapies.
Dorothy Chapman, 78, has experienced the condition for the majority of her adult life, although she hasn't had an episode since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood 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 replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided them through oxygen therapy and drugs until the attack eased.
National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or opioids should be used. Preventive options include a blood pressure medication, which reportedly helps manage the attacks of well-known individuals.
But consultant neurologists believe the guidance need updating to reflect a clearer treatment process and help GPs avoid misprescribing. For periodic patients, timing is everything: “The length of the cycle determines the treatment.” Short cycles with infrequent attacks are handled with acute treatment alone. More prolonged or more severe periods require preventives such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.
The official guidelines need revising to reflect a
