Unbearable Suffering: My Battle Against the Mysterious Pain of Cluster Headache Syndrome

It began on a dreary Monday in the morning in September 2016. I worked as a teacher, trying to settle a new group of students, when a sharp pain erupted behind my one eye. Then came rapid shocks, reminiscent of lightning bolts. As the school day came and went, the discomfort subsided and then came back with increased intensity. Four times that day I handed over a colleague with activities and ran to the school bathroom to soak my face with cool water. I tried aspirin, but the pain remained unbearable.

The attacks appeared frequently that autumn, and once more in the spring, soon forming an yearly cycle. The autumn months were the worst, then February and March. I could anticipate the routine: aura in the morning, early pangs on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches often begin with intense discomfort behind one eye that persists up to several hours.

About one in 1,000 individuals suffer by the disorder, 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 up to three hours. Attacks come in clusters, every day or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or face sweating. There exists the episodic form, which arrives in periodic cycles; some patients have chronic attacks, characterized by the lack of long symptom-free periods.

What unites sufferers is the intensity. One research paper scored the pain at 9.7 10, higher than broken bones or other conditions. A separate discovered a significant percentage of cluster patients reported thoughts of self-harm during bouts; the number fell to 4% when they were not in pain.

One patient, in her seventies, a chronic patient from Wales, isn't surprised. Her episodes started when she was a toddler. “I would throw myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through childhood. Alcohol in her teens, like several causes, made things worse. After having alcohol at her school leaving party, she remembers hardly being able to see on the bus home.

Her relatives often mistook her attacks as intoxicated behavior. Support finally 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 clerical work after relocating, but often hid her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.

Still, the failure to organize daily activities around erratic attacks took its effect. 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 most severe 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 facility.

Headaches have been described throughout history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a publication on the subject. They attributed the ailment to an evil entity who afflicted his sufferers' heads.

Ancient medical texts propose unusual treatments for what some experts would describe as a migraine. In the medieval times, migraine was identified as a distinct condition, with therapies including herbal concoctions to other, more folk remedies.

It was a European doctor who provided the first comprehensive account of a cluster headache. In his writings, he speaks of a patient “suffering with a very intense headache happening and disappearing daily at fixed hours”.

Cluster headaches were only formally classified by international medical societies in the late 1980s. From the 1960s to the 1990s, they were thought to be caused by a issue with a key blood vessel which delivers blood to the head. Leading experts in treating the disorder explain this.

In the late 1990s, scientists published the findings of a research project for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The data, published in a prominent journal, showed increased activity of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.

Despite such progress, identification remains slow. One man's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he underwent four surgeries before eventually being diagnosed in recently, after a doctor looked up his symptoms.

Neurologists say wait times in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by eliminating other primary headache disorders, such as migraine, before diagnosing cluster headaches. A thorough history is crucial: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help confirm cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to emergency rooms or are given unsuitable therapies.

A charity trustee, in her late seventies, has suffered from cluster headaches for the majority of her life, although she has been free from an episode since recent years. When she was in her twenties, she had her molars extracted because dental professionals misunderstood her pain. She believes the dental profession still need much more education. When a sufferer 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 treatment and drugs until the attack eased.

National guidance on treatment recommend that patients are offered high-flow oxygen therapy and/or a specific drug administered by injection. No tablets or opioids should be used. Preventive options include a blood pressure medication, which apparently soothes the bouts of some individuals.

But leading neurologists believe the guidance need revising to reflect a more defined treatment process and help GPs avoid misprescribing. For periodic patients, timing is critical: “The length of the cycle determines the treatment.” Brief cycles with infrequent attacks are handled with acute treatment only. Longer or more intense bouts require preventative medications such as verapamil, sometimes combined with steroids. 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 activity.

The national guidelines need updating to reflect a