Excruciating Suffering: A Personal Battle With the Mysterious Pain of Cluster Headache Syndrome
It began on a gloomy weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new group of students, when a sudden sensation erupted behind my one eye. This was followed by quick stabs, similar to electric shocks. 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 teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The attacks appeared frequently that fall, and once more in spring, soon forming an annual cycle. September and October were the most severe, then the late winter. I could anticipate the routine: aura in the shower, early twinges on the train, full-on pain in the classroom by 9.30am. 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 intense discomfort around a single eye that lasts for three hours.
About 1 in 1000 people suffer by the disorder, and males are more frequently affected. Cluster headaches typically start with abrupt, severe pain around a single eye that peaks within a short time and continues for up to three hours. Episodes come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the lack of extended symptom-free periods.
What unites patients is the severity. One research paper rated the pain at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster patients experienced thoughts of self-harm during bouts; the number dropped to four percent when they were not in pain.
Val Hobbs, 74, a long-term patient from Wales, isn't surprised. Her attacks started when she was a toddler. “I would throw myself on the floor and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she remembers barely 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 fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.
Nevertheless, the inability to organize life around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first description of headache originates from the ancient civilizations in antiquity,” write authors in a book on the subject. They linked the disease to an malevolent entity who attacked his victims' heads.
Historical healing records suggest bizarre treatments for what some observers would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more superstitious cures.
It was a European doctor who provided the initial comprehensive description of a cluster headache. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at specific hours”.
Cluster headaches were only formally recognised by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major artery which supplies blood to the head. Leading specialists in diagnosing the disorder note this.
In the late 1990s, researchers published the findings of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a prominent medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
In spite of such progress, diagnosis remains delayed. Jamie Charteris's symptoms started in 1986 and felt like “a balloon being inflated behind my one eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor researched his symptoms.
Specialists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as tension-type headache, 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? Specific features such as redness, sagging eyelids and nasal congestion help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.
Dorothy Chapman, in her late seventies, has suffered from the condition for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an bout in 2021; a reassuring volunteer guided me through oxygen therapy and drugs until the episode eased.
Official guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of some individuals.
But consultant specialists argue the guidance need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional attacks are handled with acute therapy only. Longer or more severe periods require preventative medications such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the side of the skull where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
