Full-Blown Suffering: A Personal Fight With the Mysterious Suffering of Cluster Headaches
It began on a gloomy Monday morning in September 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation bloomed behind my one eye. Then came quick shocks, similar to lightning bolts. As the school day came and went, the pain subsided and then returned with increased intensity. Four times that day I left a teaching assistant with activities and ran to the school bathroom to douse my face with cool water. I tried paracetamol, but the agony remained unbearable.
The headaches returned repeatedly 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 pattern: a warning sensation in the shower, early twinges on the train, full-on agony in class by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
This condition often start with severe pain around a single eye that lasts up to several hours.
About 1 in 1000 individuals are affected by the condition, and men are more often diagnosed. Attacks usually start with sudden, excruciating agony focused on a single eye that peaks within a short time and continues for up to three hours. Attacks come in clusters, daily or multiple times a day, and are accompanied by tearing eyes, drooping eyelids or facial sweating. There exists an episodic type, which occurs in seasonal cycles; some patients have continuous attacks, characterized by the lack of long pain-free periods.
What connects patients is the severity. One study rated the sensation at 9.7 10, more severe than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid attacks; the number fell to 4% when they were pain-free.
Val Hobbs, 74, a chronic sufferer from Pembrokeshire, finds this understandable. Her attacks began when she was two. “I would throw myself on the floor and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her adolescence, similar to many causes, made things worse. After having sherry at her school leaving party, she recalls barely being able to see on the transport home.
Her relatives often mistook her episodes as intoxicated behavior. Understanding finally came from her father and then from her partner, Rod. “I was very lucky to find such an understanding person,” she says. Hobbs found office work after moving, but often hid her condition. She was fired from one job, in part due to time off during episodes. Her definitive identification came in 2002 at a national neurology center.
Nevertheless, the failure to organize life around erratic pain took its effect. She especially hated being unable to plan social events, being seen as flaky 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 appreciate until they're gone,” she says. She recalls winning tickets for a significant concert, only to have an episode inside a facility.
Headaches have been described throughout the ages. “The first description of headache comes by way of the ancient civilizations in 4000BC,” write authors in a publication on the topic. They linked the ailment to an malevolent spirit who attacked his victims' heads.
Ancient medical texts propose unusual remedies for what some observers would describe as a migraine. In the medieval times, severe headache was recognised as a distinct disorder, with treatments including bloodletting to other, more superstitious remedies.
It was a European physician who provided the initial detailed description of a cluster-type attack. In his writings, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.
The disorder were only formally classified by international medical societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a major blood vessel which supplies blood to the brain. Leading experts in treating the condition note this.
In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a reduction when they recovered.
In spite of such advances, diagnosis remains slow. Jamie Charteris's attacks started in 1986 and felt like “a balloon being blown up behind my one eye”. Doctors thought he had a sinus issue; he underwent four operations before finally being correctly identified in 2014, after a doctor looked up his complaints.
Specialists say wait times in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He proceeds by ruling out other common head pain disorders, such as migraine, before confirming cluster headaches. A thorough patient history is essential: on which part of the head do symptoms occur? For how much time? What time of year? Are there triggers, such as alcohol? Specific features such as tearing, sagging eyelids and stuffy nose help verify the diagnosis. Once diagnosed, patients may be sent to specialist clinics. But a lot of first arrive to A&E or are given unsuitable therapies.
A charity trustee, 78, has suffered from cluster headaches for most of her life, although she hasn't had an attack since recent years. When she was in her 20s, she had her molars extracted because dentists misinterpreted her symptoms. She believes the dental profession still need much more awareness. When another patient sought help from a support group, it was she who responded. I remember calling a support line during an bout in 2021; a calm volunteer guided them through oxygen treatment and medication until the attack passed.
National guidance on treatment advise that patients are offered high-dose oxygen therapy and/or a anti-migraine medication administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.
But leading neurologists argue the guidance need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is critical: “The length of the cycle determines the treatment.” Short cycles with occasional attacks are managed with abortive treatment only. More prolonged or more intense periods require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a cycle – an procedure into the side of the head where the discomfort is that reduces nerve signals.
The official guidance need updating to reflect a
