Unbearable Pain: My Struggle Against the Puzzling Pain of Cluster Headaches

It was a overcast Monday in the morning in the autumn of 2016. I worked as a teacher, attempting to manage a new group of students, when a sharp pain bloomed behind my right eye. Then came rapid stabs, like electric shocks. As the school day progressed, the pain subsided and then returned with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.

The headaches appeared frequently 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 anticipate the routine: a warning sensation in the shower, early pangs on the commute, full-blown pain in class by 9.30am. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts up to three hours.

Approximately 1 in 1000 people suffer by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe agony around one eye that reaches its peak within minutes and continues for up to three hours. Episodes come in clusters, daily or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. There exists an episodic type, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the lack of long pain-free periods.

What connects sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster patients reported suicidal thoughts amid bouts; the figure fell to 4% when they were not in pain.

Val Hobbs, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would throw myself on the floor and hit my head. That was attributed to being spoiled,” she says. Her condition deteriorated through childhood. Alcohol in her teens, similar to several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the bus home.

Her family often mistook her episodes as intoxicated episodes. Support finally came from her father and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after relocating, but often hid her illness. She was fired from one job, in part due to time off 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 social events, being seen as flaky as a co-worker, and even having to be looked after by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple freedoms we don't appreciate until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been documented throughout the ages. “The first description of headache originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They linked the disease to an evil entity who attacked his sufferers' heads.

Ancient healing texts suggest bizarre treatments for what some experts would classify as a migraine. In the middle ages, severe headache was identified as a separate condition, with therapies including bloodletting to other, more folk cures.

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

The disorder were only officially recognised by global medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a major artery which supplies blood to the head. Leading specialists in treating the condition note this.

In the late 1990s, researchers published the findings of a study for which they had triggered cluster headaches in patients and observed the episodes in a brain scanner. The data, published in a prominent medical publication, showed activation of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a deactivation when they felt better.

Despite such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he had four surgeries before eventually being correctly identified in recently, after a doctor researched his complaints.

Neurologists say wait times in diagnosis and managing happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by eliminating other common headache conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as certain foods? Specific features such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But a lot of first arrive to emergency rooms or are given unsuitable therapies.

Dorothy Chapman, 78, has suffered from 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 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. The author recalls calling a support line during an attack in early 2021; a calm volunteer talked them through oxygen therapy and medication until the episode eased.

National guidelines on management advise that sufferers are offered high-dose oxygen therapy and/or a specific medication administered by nasal spray. No oral painkillers or strong analgesics should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But consultant specialists believe the official guidelines need revising to reflect a clearer treatment process and help GPs avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The duration of the cycle dictates the approach.” Brief cycles with occasional episodes are managed 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 nerve block injection during a bout – an procedure into the area of the head where the discomfort is that decreases nerve signals.

The national guidance need updating to reflect a