Full-Blown Suffering: A Personal Battle Against the Enigmatic Pain of Cluster Headaches

It began on a gloomy Monday in the morning in September 2016. I was working as a teacher, attempting to manage a new class, when a sharp pain sprang behind my right eye. It was followed by quick jolts, similar to lightning bolts. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cold water. I took aspirin, but the agony remained unrelenting.

The headaches returned repeatedly that autumn, and once more in the spring, soon forming an yearly cycle. September and October were the worst, then February and March. I could anticipate the routine: a warning sensation in the morning, early twinges on the commute, full-blown agony in class by mid-morning. In late 2019, a GP eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.

Cluster headaches typically start with intense pain behind one eye that persists for three hours.

About 1 in 1000 people are affected by the condition, and males are more frequently diagnosed. Cluster headaches usually begin with sudden, severe pain around a single eye that peaks within minutes and continues for as long as three hours. Episodes occur in cycles, every day or multiple times a day, and are associated with red or watery eyes, sagging eyelids or face perspiration. There exists an episodic type, which arrives in seasonal bouts; some patients have chronic attacks, characterized by the absence of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the sensation at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster headache patients reported suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.

Val Hobbs, 74, a long-term sufferer from Pembrokeshire, isn't surprised. Her episodes started 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 symptoms deteriorated through her youth. Drinking in her adolescence, like many triggers, made things more intense. After having sherry at her graduation party, she recalls hardly being able to see on the transport home.

Her relatives often interpreted her attacks as drunken 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 took office work after moving, but often concealed her condition. 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 life around erratic attacks took its toll. She particularly disliked being unable to plan outings, being seen as unreliable 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 simple liberties we don't appreciate until they're gone,” she says. She remembers winning tickets for a significant concert, only to have an episode inside a portable toilet.

Headaches have been described throughout the ages. “The earliest account of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil spirit who attacked his sufferers' heads.

Ancient medical texts suggest bizarre remedies for what some observers would classify as a headache disorder. In the middle ages, severe headache was recognised as a separate disorder, with treatments ranging from herbal concoctions to other, more folk remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing daily at specific hours”.

The disorder were only officially classified by global medical committees in 1988. From the mid-20th century to the 1990s, they were thought to be caused by a problem with a key blood vessel which supplies blood to the brain. Leading experts in diagnosing the disorder note this.

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

In spite of such advances, identification 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 underwent multiple operations before finally being correctly identified in recently, after a doctor looked up his symptoms.

Specialists say wait times in diagnosing and treatment happen because patients are seldom seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by eliminating other primary headache disorders, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which side do signs occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, drooping eyelids and nasal congestion help verify the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But many first arrive to emergency rooms or are given inadequate treatments.

A charity trustee, in her late seventies, has suffered from the condition for the majority of her adult life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When another patient sought help from a charity, it was Chapman who replied. I remember calling a helpline during an bout in early 2021; a calm volunteer guided them through oxygen treatment and medication until the episode passed.

National guidance on treatment advise that patients are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or opioids should be used. Preventive choices include verapamil, which apparently soothes the attacks of well-known people.

But leading neurologists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid misprescribing. For periodic patients, timing is everything: “The length of the bout determines the treatment.” Short cycles with occasional attacks are handled with abortive therapy only. Longer or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a nerve block injection during a cycle – an procedure into the area of the head where the pain is that decreases nerve activity.

The national guidance need revising to reflect a