Excruciating Pain: A Personal Struggle With the Mysterious Pain of Cluster Headaches
It was a gloomy Monday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a sudden pain sprang behind my one eye. This was followed by quick stabs, reminiscent of electric shocks. As each class came and went, the discomfort eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the pain remained unrelenting.
The headaches returned frequently that fall, and again in spring, soon establishing an annual pattern. The autumn months were the worst, then February and March. I could anticipate the routine: a warning sensation in the shower, early twinges on the train, full-on agony in the classroom by 9.30am. In 2019, a doctor finally referred me to a neurologist and I was given a diagnosis with cluster headaches.
This condition often begin with severe pain around one eye that lasts for several hours.
About one in 1,000 individuals suffer by the disorder, and males are more often affected. Cluster headaches usually start with abrupt, severe agony around one eye that reaches its peak within a short time and continues for up to three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. I have the episodic form, which occurs in seasonal cycles; others have continuous cluster headaches, defined by the lack of long pain-free periods.
What connects patients is the severity. One research paper rated the sensation at 9.7 10, more severe than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the figure fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the ground and hit my head. That was attributed to being spoiled,” she says. Her condition worsened through her youth. Drinking in her teens, similar to several causes, made things worse. After drinking sherry at her graduation party, she recalls barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Support finally came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a national neurology center.
Nevertheless, the inability to organize daily activities around erratic pain took its effect. She particularly disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her children during the paralysis caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a significant concert, only to have an attack inside a facility.
Headaches have been documented across history. “The earliest account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the subject. They attributed the ailment to an malevolent entity who afflicted his sufferers' heads.
Historical healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the middle ages, severe headache was identified as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious remedies.
It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very intense headache occurring and disappearing daily at fixed hours”.
Cluster headaches were only formally recognised by international medical societies in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a problem with a key blood vessel that delivers blood to the brain. Leading experts in treating the condition note this.
In the late 1990s, scientists published the results of a research project for which they had triggered cluster headaches in patients and monitored the attacks in a brain scanner. The results, published in a prominent journal, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my one eye”. Doctors thought he had a sinus issue; he had multiple surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Specialists say delays in diagnosis and treatment happen because patients are seldom seen during an episode. “You're tired and depressed, but not in agony,” a doctor says. He works by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated centers. But many first arrive to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer guided me through oxygen treatment and drugs until the attack eased.
National guidance on treatment recommend that sufferers are offered high-flow oxygen and/or a anti-migraine medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which reportedly helps manage the bouts of well-known individuals.
But leading specialists argue the guidance need revising to reflect a more defined treatment pathway and help GPs avoid misprescribing. For episodic patients, the treatment window is everything: “The duration of the cycle dictates the approach.” Brief cycles with infrequent episodes are managed with acute treatment only. Longer or more severe periods require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an injection into the area of the skull where the discomfort is that reduces nerve activity.
The national guidelines need updating to reflect a
