Unbearable Pain: My Struggle With the Mysterious Suffering of Cluster Headache Syndrome
It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new group of students, when a sudden sensation bloomed behind my one eye. It was followed by rapid stabs, like electric shocks. As each class progressed, the pain subsided and then came back with increased force. Multiple times that day I handed over a teaching assistant with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unbearable.
The attacks appeared repeatedly that autumn, and again in spring, soon forming an yearly pattern. The autumn months were the worst, then the late winter. I could predict the pattern: a warning sensation in the shower, early pangs on the train, full-on agony in the classroom by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headaches.
This condition often begin with intense pain around a single eye that lasts for several hours.
Approximately one in 1,000 people are affected by the disorder, and men are more frequently diagnosed. Attacks typically start with sudden, severe agony focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, defined by the lack of long symptom-free periods.
What connects patients is the intensity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm during attacks; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, isn't surprised. Her attacks began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Alcohol in her adolescence, similar to many causes, made things worse. After drinking alcohol at her school leaving party, she recalls barely being able to see on the transport home.
Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her husband, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was dismissed from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.
Still, the failure to plan life around erratic attacks took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a book on the topic. They linked the ailment to an evil spirit who afflicted his victims' heads.
Historical medical texts propose bizarre remedies for what modern experts would classify as a migraine. In the middle ages, severe headache was identified as a separate disorder, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “afflicted with a very severe headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent experts in treating the condition explain this.
In 1998, scientists published the results of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's symptoms started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his complaints.
Specialists say wait times in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache conditions, such as tension-type headache, before confirming the disorder. A detailed history is crucial: on which side do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to emergency rooms or are given unsuitable treatments.
Dorothy Chapman, 78, has experienced cluster headaches for the majority of her life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in 2021; a reassuring volunteer talked me through oxygen therapy and medication until the episode eased.
Official guidelines on management advise that sufferers are offered high-dose oxygen and/or a anti-migraine drug delivered by injection. No oral painkillers or opioids should be used. Preventive choices include a blood pressure medication, which reportedly soothes the bouts of some people.
But leading neurologists argue the official guidelines need updating to reflect a more defined treatment process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the discomfort is that reduces nerve signals.
The national guidance need revising to reflect a
