Excruciating Pain: My Struggle Against the Puzzling Pain of Cluster Headache Syndrome

It was a gloomy weekday in the morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As each class came and went, the pain subsided and then came back with increased intensity. Multiple times that day I handed over a teaching assistant with activities and hurried to the staff bathroom to soak my face with cold water. I took aspirin, but the agony remained unrelenting.

The attacks appeared repeatedly that autumn, and once more in the spring, soon establishing an yearly cycle. The autumn months were the most severe, then the late winter. I could predict the routine: a warning sensation in the shower, early twinges on the commute, full-on agony in the classroom by mid-morning. In late 2019, a doctor eventually sent me to a neurologist and I was diagnosed with cluster headache disorder.

This condition often begin with severe pain around a single eye that persists up to three hours.

Approximately 1 in 1000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with abrupt, severe agony focused on a single eye that peaks within minutes and lasts for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic cycles; some patients have continuous attacks, defined by the lack of extended pain-free periods.

What unites patients is the severity. One study scored the pain at 9.7 10, higher than bone fractures or pancreatitis. A separate discovered a significant percentage of cluster headache patients reported suicidal thoughts during attacks; the number fell to four percent when they were not in pain.

One patient, in her seventies, a chronic sufferer from Wales, finds this understandable. Her episodes began when she was a toddler. “I would throw myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her condition worsened through childhood. Drinking in her teens, like several triggers, made things more intense. After having alcohol at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as intoxicated behavior. Support eventually came from her father and then from her husband, her spouse. “I was very lucky to find such an understanding person,” she says. Hobbs took office work after relocating, but often concealed her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a national hospital.

Still, the inability to organize daily activities around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described throughout history. “The earliest description of headache comes by way of the Mesopotamians in 4000BC,” write experts in a book on the topic. They linked the ailment to an evil entity who attacked his sufferers' heads.

Historical medical records propose unusual treatments for what modern observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial detailed description of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at fixed hours”.

The disorder were only officially classified by international medical committees in the late 1980s. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Prominent specialists in diagnosing the disorder explain this.

In 1998, researchers published the findings of a research project for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, featured in a major journal, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in discomfort, and a deactivation when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being diagnosed in recently, after a physician researched his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in agony,” a doctor says. He works by eliminating other primary headache disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is crucial: on which part of the head do symptoms appear? For how much time? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist clinics. But many first arrive to emergency rooms or are given inadequate therapies.

Dorothy Chapman, 78, has experienced the condition for most of her adult life, although she hasn't had an episode since recent years. When she was in her 20s, she had her teeth pulled because dentists misinterpreted her pain. She thinks dentists still need much more education. When a sufferer sought help from a support group, it was she who replied. I remember calling a helpline during an attack in early 2021; a reassuring volunteer guided them through oxygen therapy and medication until the attack passed.

Official guidelines on treatment recommend that patients are offered high-dose oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly soothes the attacks of some individuals.

But leading specialists argue the official guidelines need updating to reflect a more defined clinical process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Short cycles with occasional episodes are handled with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes paired with corticosteroids. 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 activity.

The official guidelines need updating to reflect a