Excruciating Agony: My Battle Against the Enigmatic Suffering of Cluster Headaches
It was a overcast weekday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new class, when a intense sensation erupted behind my right eye. Then came rapid jolts, reminiscent of lightning bolts. As the school day progressed, the discomfort subsided and then came back with greater intensity. Multiple times that day I handed over a colleague with worksheets and ran to the school bathroom to douse my face with cold water. I took paracetamol, but the agony remained unrelenting.
The attacks returned frequently that fall, and once more in the spring, soon forming an yearly cycle. The autumn months were the most severe, then February and March. I could predict the routine: aura in the shower, early twinges on the train, 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 often start with severe pain behind one eye that persists up to three hours.
Approximately 1 in 1000 individuals are affected by the condition, and males are more frequently diagnosed. Cluster headaches typically begin with abrupt, excruciating agony around one eye that reaches its peak within a short time and lasts for as long as three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by red or watery eyes, drooping eyelids or facial perspiration. I have the episodic form, which occurs in periodic bouts; some patients have chronic cluster headaches, defined by the absence of extended symptom-free periods.
What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate found 64% of cluster patients experienced suicidal thoughts amid attacks; the figure dropped to 4% when they were pain-free.
Val Hobbs, 74, a chronic patient from Wales, finds this understandable. Her episodes started when she was two. “I would throw myself on the ground and hit my head. That was attributed to being a difficult child,” she says. Her symptoms deteriorated through her youth. Alcohol in her adolescence, like many triggers, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the bus home.
Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very lucky to find such an exceptional person,” she says. Hobbs took office work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.
Nevertheless, the failure to organize life around erratic attacks took its effect. She especially disliked being unable to plan outings, being seen as flaky as a co-worker, and even having to be looked after by her children during the incapacitation 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 major concert, only to have an attack inside a facility.
Headaches have been described across the ages. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the disease to an malevolent spirit who attacked his sufferers' heads.
Ancient healing records suggest bizarre remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from bloodletting to other, more folk cures.
It was a Dutch doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.
The disorder were only formally recognised by international headache committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a key blood vessel that supplies blood to the brain. Leading specialists in diagnosing the condition note this.
In 1998, researchers published the results of a research project for which they had triggered attacks in patients and monitored the attacks in a brain scanner. The data, published in a prominent journal, showed activation of the a brain region, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such progress, diagnosis remains slow. One man's symptoms began in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four surgeries before eventually being correctly identified in recently, after a physician researched his symptoms.
Specialists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in agony,” a doctor says. He works by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to emergency rooms or are given inadequate treatments.
A charity trustee, 78, has experienced cluster headaches for the majority of her adult life, although she has been free from an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her pain. She thinks dentists still need greater awareness. When another patient sought help from a charity, it was Chapman who responded. I remember calling a helpline during an attack in early 2021; a reassuring volunteer talked me through oxygen treatment and drugs until the episode passed.
National guidelines on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug delivered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently helps manage the attacks of some people.
But consultant neurologists argue the official guidelines need revising to reflect a clearer clinical process and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short cycles with occasional attacks are managed with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.
The official guidance need updating to reflect a
