Unbearable Suffering: A Personal Struggle With the Mysterious Pain of Cluster Headache Syndrome

It began on a overcast Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a sharp pain bloomed behind my one eye. This was followed by quick shocks, reminiscent of lightning bolts. As each class progressed, the discomfort subsided and then returned with greater force. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to soak my face with cold water. I tried aspirin, but the pain remained unbearable.

The attacks returned frequently that fall, and again in the spring, soon establishing an yearly pattern. September and October were the most severe, then February and March. I could predict the routine: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In late 2019, a GP finally referred me to a neurologist and I was diagnosed with cluster headache disorder.

Cluster headaches typically start with severe pain around a single eye that lasts for several hours.

About 1 in 1000 individuals suffer by the condition, and males are more often diagnosed. Attacks typically begin with sudden, severe agony around one eye that peaks within minutes and continues for as long as three hours. Attacks occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial perspiration. I have the episodic form, which arrives in periodic cycles; some patients have chronic cluster headaches, characterized by the lack of long symptom-free periods.

What unites patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid attacks; the figure dropped to four percent when they were pain-free.

One patient, 74, a chronic patient from Pembrokeshire, finds this understandable. Her attacks began when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things more intense. After drinking alcohol at her school leaving party, she recalls barely being able to see on the bus home.

Her family often mistook her attacks as drunken episodes. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs took office work after moving, but often concealed her illness. She was dismissed from one job, in part due to time off during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize daily activities around unpredictable pain took its toll. 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 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 significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest account of headache originates from the ancient civilizations in antiquity,” write experts in a publication on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Historical healing texts propose bizarre remedies for what modern observers would classify as a migraine. In the medieval times, migraine was recognised as a distinct disorder, with treatments ranging from bloodletting to other, more folk remedies.

It was a Dutch physician who provided the first detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache occurring and disappearing each day at specific hours”.

Cluster headaches were only formally classified by global medical committees in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a problem with a key blood vessel which delivers blood to the brain. Prominent specialists in treating the disorder note this.

In the late 1990s, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a brain scanner. The results, published in a major journal, showed activation of the a brain region, which is in charge for human circadian rhythm, when patients were in discomfort, and a reduction when they recovered.

Despite such progress, identification remains slow. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent multiple surgeries before eventually being diagnosed in 2014, after a physician researched his symptoms.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in agony,” a doctor says. He works by ruling out other primary headache conditions, such as migraine, before diagnosing cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first go to A&E or are given unsuitable therapies.

Dorothy Chapman, in her late seventies, has experienced the condition for most of her adult life, although she hasn't had an attack since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misunderstood her symptoms. She thinks dentists still need greater education. When another patient 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 me through oxygen treatment and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a specific drug delivered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which apparently soothes the attacks of well-known individuals.

But consultant specialists argue the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is everything: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with acute therapy alone. Longer or more intense 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 cycle – an injection into the area of the skull where the pain is that reduces nerve activity.

The official guidance need updating to reflect a