Excruciating Suffering: My Battle With the Puzzling Suffering of Cluster Headache Syndrome

It began on a overcast Monday in the morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a intense pain bloomed behind my one eye. It was followed by rapid shocks, like lightning bolts. As each class progressed, the pain eased and then returned with increased intensity. Four times that day I left a teaching assistant with worksheets and hurried to the staff bathroom to soak my face with cool water. I tried ibuprofen, but the pain remained unrelenting.

The headaches appeared repeatedly that autumn, and again in the spring, soon establishing an yearly pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: aura in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP finally referred me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with intense discomfort around a single eye that persists up to several hours.

Approximately one in 1,000 individuals suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for as long as three hours. Episodes occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial perspiration. I have an episodic type, which occurs in periodic bouts; some patients have continuous cluster headaches, characterized by the lack of extended symptom-free periods.

What connects sufferers is the severity. One study scored the pain at 9.7 10, more severe than broken bones or other conditions. A separate discovered 64% of cluster patients experienced suicidal thoughts amid attacks; the figure fell to four percent when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, finds this understandable. Her episodes began when she was a toddler. “I would hurl myself on the ground and bang my head. That was put down to being spoiled,” she says. Her symptoms worsened through her youth. Alcohol in her teens, similar to many triggers, made things worse. After having alcohol at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her episodes as intoxicated episodes. Support eventually came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was dismissed from one job, in part due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist hospital.

Still, the inability to organize life around unpredictable pain took its effect. She especially disliked being unable to plan social events, being seen as unreliable as a co-worker, and even having to be cared for by her children during the incapacitation caused by the most severe episodes. “It steals from you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a facility.

Headaches have been described throughout the ages. “The first account of headache comes by way of the ancient civilizations in antiquity,” write experts in a book on the topic. They attributed the disease to an malevolent spirit who attacked his victims' heads.

Historical healing texts propose bizarre treatments for what modern observers would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with treatments including herbal concoctions to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive description of a cluster headache. In his writings, he speaks of a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.

The disorder were only formally recognised by international medical societies in the late 1980s. From the mid-20th century to the 1990s, they were believed to be caused by a issue with a major blood vessel that supplies blood to the head. Prominent specialists in treating the condition explain this.

In 1998, scientists published the results of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed increased activity of the a brain region, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.

In spite of such advances, identification remains delayed. One man's attacks began in 1986 and felt like “a balloon being blown up behind my left eye”. Doctors thought he had sinus problems; he underwent multiple operations before eventually being diagnosed in recently, after a physician looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in severe pain,” a doctor says. He proceeds by ruling out other common head pain conditions, such as migraine, before confirming cluster headaches. A detailed history is crucial: on which side do signs occur? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.

Dorothy Chapman, 78, has experienced cluster headaches for most of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dental professionals misunderstood her symptoms. She believes the dental profession still need greater awareness. When another patient sought help from a support group, it was she who replied. The author recalls calling a support line during an bout in early 2021; a calm volunteer guided them through oxygen therapy and drugs until the episode eased.

Official guidelines on management recommend that sufferers are offered high-dose oxygen and/or a anti-migraine medication delivered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But leading specialists argue the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, the treatment window is critical: “The duration of the bout dictates the approach.” Short bouts with occasional attacks are managed with abortive therapy only. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes paired with corticosteroids. A significant number of patients also receive a nerve block injection during a bout – an procedure into the side of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a