Excruciating Pain: My Battle With the Mysterious Suffering of Cluster Headaches
It began on a overcast weekday in the morning in September 2016. I was working as a educator, trying to settle a new class, when a sudden sensation bloomed behind my right eye. This was followed by quick jolts, reminiscent of electric shocks. As the school day progressed, the discomfort subsided and then returned with greater intensity. Multiple times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried paracetamol, but the agony remained unbearable.
The attacks returned repeatedly that fall, and again in the spring, soon establishing an annual cycle. The autumn months were the most severe, then February and March. I could predict the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in class by 9.30am. In 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.
Cluster headaches typically begin with intense pain around a single eye that persists for several hours.
About 1 in 1000 people are affected by the condition, and men are more often diagnosed. Cluster headaches usually begin with sudden, severe pain focused on one eye that peaks within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are associated with red or watery eyes, sagging eyelids or facial sweating. I have an episodic type, which arrives in periodic cycles; some patients have continuous cluster headaches, characterized by the absence of extended symptom-free periods.
What unites sufferers is the intensity. One study rated the sensation at 9.7 10, higher than bone fractures or pancreatitis. A separate found 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number fell to 4% when they were not in pain.
Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks started when she was a toddler. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, like many causes, made things worse. After having alcohol at her school leaving party, she recalls hardly being able to see on the transport home.
Her relatives often mistook her attacks as drunken behavior. Understanding eventually came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after relocating, but often concealed her condition. She was fired from one job, in part due to absences during attacks. Her definitive diagnosis came in the early 2000s at a specialist hospital.
Nevertheless, the failure to plan life around erratic pain took its toll. She especially disliked being unable to plan social events, being seen as unreliable as a colleague, and even having to be looked after by her children during the paralysis caused by the most severe episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a portable toilet.
Headaches have been documented throughout history. “The first account of headache comes by way of the Mesopotamians in 4000BC,” write experts in a publication on the topic. They attributed the ailment to an evil spirit who afflicted his sufferers' heads.
Ancient healing records suggest bizarre remedies for what some experts would describe as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies including herbal concoctions to other, more superstitious cures.
It was a European doctor who provided the initial detailed account of a cluster headache. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing daily at specific hours”.
Cluster headaches were only officially classified by international medical committees in 1988. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition note this.
In the late 1990s, scientists published the results of a study for which they had induced cluster headaches in patients and monitored the attacks in a imaging machine. The results, published in a major journal, 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.
Despite such advances, identification remains delayed. Jamie Charteris's attacks started in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before eventually being diagnosed in 2014, after a doctor looked up his symptoms.
Specialists say wait times in diagnosing and treatment occur because patients are seldom seen mid-attack. “You're exhausted and low, but not in severe pain,” a doctor says. He works by ruling out other common head pain disorders, such as tension-type headache, before confirming cluster headaches. A detailed patient history is essential: on which part of the head do signs appear? For how long? What season? Are there precipitating factors, such as certain foods? Certain features such as tearing, drooping eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to dedicated clinics. But a lot of first go to A&E or are given unsuitable therapies.
Dorothy Chapman, 78, has suffered from cluster headaches for most of her adult life, although she has been free from an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misinterpreted her symptoms. She thinks the dental profession still need greater awareness. When another patient sought help from a support group, it was Chapman who replied. I remember calling a support line during an attack in 2021; a reassuring advisor guided them through oxygen treatment and medication until the attack eased.
National guidance on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by injection. No tablets or strong analgesics should be used. Preventive choices include verapamil, which reportedly soothes the attacks of well-known people.
But consultant specialists believe the official guidelines need updating to reflect a more defined treatment process and help general practitioners avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout dictates the treatment.” Short cycles with occasional episodes are handled with acute treatment alone. Longer or more severe periods require preventives such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that reduces nerve activity.
The national guidelines need revising to reflect a
