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

It began on a overcast Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sudden pain bloomed behind my one eye. This was followed by rapid stabs, similar to electric shocks. As each class came and went, the pain eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned frequently that autumn, and again in spring, soon forming an annual cycle. September and October were the most severe, then February and March. I could anticipate the routine: aura in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a doctor finally sent me to a specialist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often begin with severe discomfort behind one eye that persists up to three hours.

About 1 in 1000 people are affected by the disorder, and males are more often affected. Cluster headaches typically start with abrupt, severe agony around a single eye that reaches its peak within minutes and continues for up to three hours. Episodes occur in cycles, daily or several times a day, and are associated with tearing eyes, sagging eyelids or facial perspiration. There exists the episodic form, which occurs in seasonal cycles; others have chronic attacks, defined by the lack of long pain-free periods.

What unites patients is the severity. One research paper rated the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate found a significant percentage of cluster headache patients reported thoughts of self-harm during bouts; the number dropped to 4% when they were not in pain.

One patient, 74, a chronic sufferer from Wales, isn't surprised. Her episodes started when she was two. “I would hurl myself on the floor and hit my head. That was put down to being spoiled,” she says. Her condition worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her graduation party, she recalls barely being able to see on the transport home.

Her family often interpreted her attacks as drunken episodes. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs found clerical work after relocating, but often hid her condition. She was fired from one job, in part due to absences during episodes. Her definitive diagnosis came in the early 2000s at a national hospital.

Still, the inability to plan daily activities around unpredictable pain took its toll. She particularly disliked being unable to plan social events, being seen as flaky as a co-worker, and even having to be cared for by her family during the incapacitation caused by the worst 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 originates from the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent entity who afflicted his victims' heads.

Ancient healing records suggest unusual treatments for what some observers would describe as a headache disorder. In the medieval times, migraine was recognised as a separate condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a Dutch doctor who provided the initial comprehensive account of a cluster headache. In his medical observations, he speaks of a patient “suffering with a very severe headache happening and disappearing each day 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 believed to be caused by a problem with a major blood vessel that supplies blood to the head. Leading specialists in treating the disorder explain this.

In 1998, scientists released the results of a research project for which they had induced attacks in patients and monitored the attacks in a imaging machine. The data, published in a major journal, showed activation of the a brain region, which is responsible for human sleep-wake cycles, when patients were in pain, and a reduction when they felt better.

Despite such progress, identification remains delayed. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had a sinus issue; he had multiple operations before eventually being correctly identified in 2014, after a doctor researched his symptoms.

Specialists say wait times in diagnosis and treatment happen because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as migraine, before confirming the disorder. A detailed patient history is crucial: on which side do signs occur? For how much time? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given inadequate therapies.

Dorothy Chapman, 78, has suffered from the condition for most of her life, although she has been free from an episode since recent years. When she was in her 20s, she had her teeth extracted because dental professionals misinterpreted her symptoms. She thinks dentists still need greater education. When another patient sought help from a charity, it was she who replied. The author recalls calling a support line during an bout in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.

Official guidance on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine medication administered by injection. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which reportedly soothes the bouts of well-known individuals.

But consultant neurologists believe the official guidelines need updating to reflect a clearer clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short cycles with occasional episodes are handled with abortive therapy alone. Longer or more intense periods require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an procedure into the side of the skull where the pain is that reduces nerve signals.

The national guidance need updating to reflect a