Excruciating Suffering: My Battle With the Mysterious Suffering of Cluster Headaches

It began on a dreary Monday morning in September 2016. I was working as a educator, trying to settle a new group of students, when a intense pain bloomed behind my right eye. It was followed by quick shocks, similar to electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Four times that day I handed over a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unrelenting.

The headaches returned frequently that autumn, and again in the spring, soon establishing an yearly cycle. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-on agony in class by 9.30am. In late 2019, a GP eventually referred me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense discomfort behind a single eye that lasts up to three hours.

Approximately one in 1,000 people suffer by the condition, and men are more often diagnosed. Cluster headaches typically begin with sudden, severe agony focused on one eye that peaks within minutes and continues for up to three hours. Episodes occur in cycles, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which occurs in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.

What unites sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than bone fractures or other conditions. A separate discovered 64% of cluster patients reported suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.

Val Hobbs, in her seventies, a long-term patient from Wales, 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 worsened through childhood. Alcohol in her teens, like several triggers, made things worse. After having alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her attacks as intoxicated behavior. Understanding finally came from her parent and then from her partner, Rod. “I was very lucky to find such an exceptional person,” she says. Hobbs found office work after relocating, but often hid her condition. She was dismissed from one job, partly due to absences during attacks. Her breakthrough identification came in the early 2000s at a specialist neurology center.

Nevertheless, the failure to organize life around erratic pain took its toll. She particularly disliked being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It steals from you of the simple freedoms we don't value until they're gone,” she says. She remembers winning tickets for a major concert, only to have an episode inside a facility.

Headaches have been described across history. “The earliest description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a book on the topic. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical medical records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was recognised as a separate condition, with treatments ranging from bloodletting to other, more superstitious cures.

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

Cluster headaches were only officially classified by global headache societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a major blood vessel that delivers blood to the head. Prominent specialists in treating the condition note this.

In 1998, researchers released the results of a study for which they had triggered attacks in patients and observed the episodes in a imaging machine. The data, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

In spite of such progress, identification remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had a sinus issue; he underwent four surgeries before finally being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say delays in diagnosis and managing occur because patients are seldom seen mid-attack. “You're tired and depressed, but not in agony,” a doctor says. He proceeds by eliminating other common head pain conditions, such as tension-type headache, before diagnosing the disorder. A detailed patient history is essential: on which side do symptoms occur? For how much time? What season? Are there triggers, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to dedicated centers. But a lot of first arrive to emergency rooms or are given inadequate therapies.

A charity trustee, 78, has suffered from the condition for the majority of her life, although she has been free from an attack since recent years. When she was in her twenties, she had her molars pulled because dental professionals misinterpreted her pain. She believes dentists still need greater awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an bout in early 2021; a reassuring advisor talked them through oxygen therapy and medication until the episode eased.

National guidelines on treatment advise that sufferers are offered high-flow oxygen and/or a specific drug administered by injection. No tablets or opioids should be used. Prophylactic choices include a blood pressure medication, which apparently soothes the attacks of well-known people.

But consultant neurologists argue the official guidelines need updating to reflect a clearer treatment pathway and help general practitioners avoid misprescribing. For periodic patients, the treatment window is everything: “The duration of the cycle determines the treatment.” Short bouts with occasional episodes are handled with abortive therapy only. Longer or more severe bouts require preventives such as certain drugs, sometimes combined 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 discomfort is that decreases nerve activity.

The national guidance need updating to reflect a