Unbearable Pain: My Fight With the Mysterious Pain of Cluster Headache Syndrome
It was a gloomy Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden sensation erupted behind my right eye. This was followed by quick stabs, reminiscent of lightning bolts. As each class came and went, the pain subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to soak my face with cool water. I took paracetamol, but the pain remained unbearable.
The attacks appeared frequently that fall, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then February and March. I could predict the routine: aura in the shower, early pangs on the commute, full-on pain in the classroom by mid-morning. In 2019, a doctor finally referred me to a neurologist and I was diagnosed with cluster headache disorder.
This condition typically start with intense discomfort behind a single eye that persists for several hours.
About one in 1,000 people are affected by the disorder, and men are more often affected. Cluster headaches typically start with sudden, severe agony focused on one eye that reaches its peak within minutes and continues for as long as three hours. Attacks occur in cycles, daily or multiple times a day, and are accompanied by red or watery eyes, drooping eyelids or facial sweating. There exists the episodic form, which arrives in seasonal cycles; some patients have chronic cluster headaches, defined by the lack of long pain-free periods.
What unites patients is the intensity. One research paper rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate found a significant percentage of cluster patients reported thoughts of self-harm amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being a difficult child,” she says. Her condition worsened through childhood. Drinking in her teens, like several causes, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was dismissed from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a national neurology center.
Still, the inability to plan life around erratic attacks took its effect. She particularly hated being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It steals from you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the subject. They linked the disease to an evil spirit who afflicted his sufferers' heads.
Ancient medical texts propose bizarre remedies for what modern observers would describe as a headache disorder. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk cures.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day at fixed hours”.
Cluster headaches were only formally classified by international medical societies in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a issue with a key blood vessel which supplies blood to the head. Prominent specialists in diagnosing the disorder explain this.
In the late 1990s, researchers released the results of a research project for which they had triggered cluster headaches in patients and observed the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in recently, after a physician looked up his symptoms.
Neurologists say wait times in diagnosis and treatment occur because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough history is essential: on which part of the head do symptoms occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain features such as tearing, sagging eyelids and nasal congestion help verify the diagnosis. Once identified, patients may be referred to dedicated clinics. But many first go to A&E or are given inadequate treatments.
Dorothy Chapman, in her late seventies, has experienced cluster headaches for most of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dental professionals misinterpreted her symptoms. She thinks the dental profession still need much more awareness. When a sufferer sought help from a support group, it was Chapman who responded. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided me through oxygen therapy and medication until the attack passed.
National guidelines on treatment recommend that sufferers are offered high-flow oxygen and/or a specific medication administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include a blood pressure medication, which reportedly soothes the attacks of some individuals.
But leading neurologists believe the guidance need revising to reflect a clearer clinical pathway and help GPs avoid misprescribing. For episodic patients, timing is critical: “The duration of the cycle determines the approach.” Brief cycles with occasional episodes are handled with acute therapy alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidance need updating to reflect a
