Unbearable Suffering: My Struggle With the Puzzling Suffering of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a teacher, trying to settle a new group of students, when a intense pain bloomed behind my one eye. This was followed by quick shocks, similar to lightning bolts. As the school day came and went, the discomfort subsided and then came back with greater force. Multiple times that day I handed over a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the agony remained unrelenting.
The headaches appeared repeatedly that fall, and once more in spring, soon forming an annual pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
Cluster headaches often start with severe pain around one eye that persists for three hours.
Approximately 1 in 1000 people are affected by the condition, and males are more often diagnosed. Cluster headaches usually start with abrupt, excruciating pain around a single eye that reaches its peak within a short time and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, characterized by the absence of long symptom-free periods.
What unites patients is the severity. One research paper scored the pain at 9.7 10, more severe than broken bones or pancreatitis. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes started when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her teens, like many triggers, made things worse. After having sherry at her graduation party, she remembers hardly being able to see on the transport home.
Her family often interpreted her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was fired from one job, partly due to time off during attacks. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first description of headache originates from the Mesopotamians in 4000BC,” write experts in a book on the subject. They linked the ailment to an evil entity who attacked his victims' heads.
Ancient healing records propose unusual remedies for what modern experts would describe as a migraine. In the medieval times, severe headache was identified as a distinct disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a European doctor who provided the initial comprehensive account of a cluster headache. In his writings, he speaks of a patient “afflicted with a very severe headache happening and disappearing each day at specific hours”.
The disorder were only officially classified by global medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major blood vessel that delivers blood to the brain. Leading experts in treating the condition explain this.
In the late 1990s, researchers published the results of a research project for which they had triggered attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
Despite such progress, diagnosis remains slow. Jamie Charteris's symptoms started in the 1980s and felt like “a balloon being inflated behind my left eye”. GPs thought he had a sinus issue; he had four operations before eventually being diagnosed in recently, after a doctor looked up his complaints.
Specialists say wait times in diagnosis and managing happen because patients are rarely seen during an episode. “You're exhausted and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache disorders, such as migraine, before confirming the disorder. A thorough history is crucial: on which side do signs appear? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help verify cluster headaches. Once diagnosed, patients may be referred to specialist centers. But many first go to emergency rooms or are given inadequate treatments.
Dorothy Chapman, 78, has experienced the condition for most 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 misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a charity, it was she who responded. I remember calling a support line during an attack in early 2021; a calm advisor guided them through oxygen therapy and drugs until the episode passed.
Official guidance on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug administered by nasal spray. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the attacks of some individuals.
But leading neurologists argue the guidance need updating to reflect a more defined treatment pathway and help GPs avoid misprescribing. For periodic patients, the treatment window is everything: “The length of the bout determines the approach.” Short cycles with occasional episodes are managed with abortive therapy only. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that reduces nerve activity.
The national guidelines need revising to reflect a
