Unbearable Pain: A Personal Struggle With the Enigmatic Suffering of Cluster Headaches
It was a overcast weekday in the morning in the autumn of 2016. I was working as a educator, trying to settle a new class, when a sudden pain erupted behind my right eye. Then came quick shocks, similar to lightning bolts. As each class progressed, the pain eased and then returned with greater force. Multiple times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The headaches returned repeatedly that autumn, and once more in spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: aura in the morning, early twinges on the commute, full-on pain in the classroom by mid-morning. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense discomfort behind a single eye that lasts for several hours.
About one in 1,000 individuals are affected by the disorder, and males are more often diagnosed. Cluster headaches typically begin with sudden, excruciating agony focused on one eye that peaks within minutes and lasts for as long as three hours. Episodes occur in cycles, daily or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have the episodic form, which arrives in seasonal bouts; some patients have chronic attacks, defined by the lack of extended symptom-free periods.
What connects patients is the intensity. One research paper rated the sensation at 9.7 out of 10, more severe than bone fractures or pancreatitis. Another found 64% of cluster patients experienced suicidal thoughts amid attacks; the number fell to four percent when they were pain-free.
Val Hobbs, in her seventies, a long-term sufferer from Wales, finds this understandable. Her episodes started when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Alcohol in her adolescence, like many triggers, made things worse. After drinking sherry at her school leaving party, she remembers barely being able to see on the bus home.
Her family often mistook her episodes as drunken episodes. Understanding eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, partly due to absences during attacks. Her definitive identification came in 2002 at a national neurology center.
Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. She especially hated being unable to plan social events, being seen as flaky as a colleague, and even having to be cared for by her family during the incapacitation caused by the worst episodes. “It steals from 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 episode inside a facility.
Headaches have been documented across the ages. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write experts in a publication on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.
Ancient healing records propose bizarre treatments for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a distinct disorder, with treatments ranging from herbal concoctions to other, more folk remedies.
It was a Dutch physician who provided the initial comprehensive description of a cluster headache. In his medical observations, he describes a patient “suffering with a very severe headache occurring and disappearing daily at fixed hours”.
The disorder were only formally classified by global headache committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Leading specialists in treating the condition 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 episodes in a brain scanner. The data, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they felt better.
In spite of such advances, diagnosis remains delayed. One man's attacks began in the 1980s and felt like “a modelling balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being diagnosed in 2014, after a doctor researched his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” a doctor says. He works by eliminating other common headache disorders, such as migraine, before diagnosing cluster headaches. A thorough patient history is crucial: on which side do signs occur? For how long? What season? Are there triggers, such as alcohol? Certain features such as tearing, sagging eyelids and stuffy nose help verify 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 adult life, although she has been free from an episode since recent years. When she was in her twenties, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need much more awareness. When another patient sought help from a charity, it was she who replied. The author recalls calling a helpline during an attack in 2021; a reassuring advisor talked me through oxygen treatment and drugs until the attack eased.
National guidelines on management recommend that patients are offered high-dose oxygen therapy and/or a specific drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive options include verapamil, which apparently soothes the attacks of well-known people.
But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Brief bouts with infrequent episodes are handled with abortive treatment alone. More prolonged or more intense bouts require preventives such as certain drugs, sometimes paired 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 discomfort is that reduces nerve activity.
The national guidelines need revising to reflect a
