Full-Blown Pain: My Struggle Against the Puzzling Suffering of Cluster Headaches

It began on a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. It was followed by rapid stabs, reminiscent of lightning bolts. As the school day came and went, the pain subsided and then came back with greater intensity. Four times that day I handed over a colleague with activities and ran to the staff bathroom to douse my face with cold water. I took aspirin, but the pain remained unrelenting.

The attacks appeared frequently that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense pain behind one eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and men are more frequently affected. Cluster headaches typically start with sudden, severe agony around one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, daily or several times a day, and are accompanied by tearing eyes, drooping eyelids or face perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, characterized by the absence of extended pain-free periods.

What unites patients is the severity. One research paper rated the pain at 9.7 10, more severe than bone fractures or other conditions. Another discovered a significant percentage of cluster headache patients reported suicidal thoughts amid attacks; the figure fell to four percent when they were not in pain.

One patient, 74, a chronic sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the floor and hit my head. That was put down to being a difficult child,” she says. Her condition deteriorated through childhood. Drinking in her adolescence, like many causes, made things worse. After drinking alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her family often mistook her episodes as intoxicated behavior. Understanding eventually came from her father and then from her husband, Rod. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often concealed her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable attacks took its effect. She especially hated 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 incapacitation 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 obtaining tickets for a significant concert, only to have an episode inside a facility.

Headaches have been described across history. “The first description of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the disease to an evil spirit who attacked his sufferers' heads.

Historical medical records suggest unusual treatments for what modern observers would describe as a migraine. In the medieval times, severe headache was recognised as a separate condition, with therapies including bloodletting to other, more folk remedies.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he speaks of a patient “afflicted with a very severe headache happening and vanishing each day at fixed hours”.

The disorder were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a problem with a major artery that supplies blood to the head. Leading specialists in diagnosing the condition note this.

In the late 1990s, scientists published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The data, published in a major medical publication, showed activation of the a brain region, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a modelling balloon being inflated behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're tired and depressed, but not in agony,” one says. He proceeds by ruling out other primary headache disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Certain features such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once identified, patients may be sent to specialist clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has experienced cluster headaches for most of her life, although she hasn't had an attack since 2016. When she was in her twenties, she had her molars extracted because dentists misunderstood her symptoms. She believes the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in early 2021; a reassuring advisor guided them through oxygen therapy and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug administered by nasal spray. No oral painkillers or strong analgesics should be used. Prophylactic choices include verapamil, which apparently soothes the attacks of well-known individuals.

But leading specialists believe the official guidelines need updating to reflect a more defined treatment pathway and help general practitioners avoid misprescribing. For episodic patients, the treatment window is critical: “The duration of the bout dictates the treatment.” Brief bouts with infrequent attacks are handled with acute therapy only. Longer or more severe bouts require preventative medications such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the skull where the discomfort is that decreases nerve signals.

The official guidance need updating to reflect a