Excruciating Agony: A Personal Battle Against the Mysterious Pain of Cluster Headaches
It began on a gloomy weekday morning in the autumn of 2016. I worked as a educator, trying to settle a new class, when a sudden pain bloomed behind my one eye. Then came quick jolts, reminiscent of electric shocks. As each class progressed, the pain eased and then returned with greater force. Four times that day I left a colleague with worksheets and ran to the staff bathroom to douse my face with cold water. I tried ibuprofen, but the agony remained unrelenting.
The attacks appeared frequently that fall, 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 train, full-on agony in the classroom by 9.30am. In late 2019, a GP finally sent me to a specialist and I was diagnosed with cluster headache disorder.
Cluster headaches often start with severe discomfort behind a single eye that lasts up to several hours.
Approximately 1 in 1000 individuals suffer by the disorder, and males are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on one eye that reaches its peak within a short time and continues for up to three hours. Attacks come in clusters, daily or several times a day, and are associated with red or watery eyes, drooping eyelids or face perspiration. There exists an episodic type, which occurs in periodic cycles; others have continuous cluster headaches, defined by the absence of long pain-free periods.
What unites patients is the intensity. One research paper scored the pain at 9.7 out of 10, higher than bone fractures or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts amid bouts; the number fell to four percent when they were not in pain.
One patient, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began 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 worsened through childhood. Drinking in her teens, similar to many causes, made things more intense. After drinking sherry at her school leaving party, she remembers hardly being able to see on the transport home.
Her relatives often interpreted her episodes as intoxicated behavior. Support eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an understanding person,” she says. Hobbs took office work after moving, but often hid her condition. She was fired from one job, partly due to time off during attacks. Her definitive identification came in 2002 at a specialist neurology center.
Still, the failure to plan daily activities around erratic attacks took its toll. She especially disliked being unable to plan outings, being seen as flaky as a colleague, and even having to be cared for by her children during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She remembers obtaining tickets for a major concert, only to have an attack inside a portable toilet.
Headaches have been described across history. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They attributed the ailment to an evil entity who afflicted his sufferers' heads.
Historical healing texts suggest bizarre treatments for what modern experts would classify as a migraine. In the medieval times, severe headache was identified as a distinct condition, with treatments ranging from herbal concoctions to other, more superstitious remedies.
It was a European physician who provided the first detailed account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache occurring and disappearing each day at fixed hours”.
The disorder were only formally classified by international medical committees in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key blood vessel that supplies blood to the head. Prominent specialists in treating the disorder note this.
In the late 1990s, scientists released the findings of a research project for which they had triggered attacks in patients and observed the episodes in a imaging machine. The results, featured in a prominent journal, showed increased activity of the a brain region, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they felt better.
Despite such advances, identification remains delayed. One man's symptoms began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. GPs thought he had sinus problems; he had multiple surgeries before eventually being diagnosed in recently, after a physician looked up his complaints.
Neurologists say delays in diagnosis and managing happen because patients are seldom seen mid-attack. “You're exhausted and depressed, but not in severe pain,” one says. He works by eliminating other common head pain disorders, such as tension-type headache, before diagnosing the disorder. A thorough history is essential: on which side do signs appear? For how long? What season? Are there triggers, such as certain foods? Specific features such as tearing, drooping eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to dedicated centers. But a lot of first arrive to A&E or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for most of her adult life, although she has been free from an attack since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks dentists still need greater awareness. When another patient sought help from a support group, it was she who replied. I remember calling a helpline during an attack in 2021; a reassuring advisor talked them through oxygen therapy and drugs until the episode passed.
Official guidelines on management advise that patients are offered high-flow oxygen therapy and/or a anti-migraine medication delivered by nasal spray. No tablets or opioids should be used. Preventive choices include a blood pressure medication, which reportedly helps manage the bouts of some individuals.
But consultant specialists believe the guidance need updating to reflect a more defined clinical pathway and help general practitioners avoid incorrect prescriptions. For episodic patients, the treatment window is everything: “The length of the cycle determines the approach.” Brief cycles with infrequent episodes are managed with acute treatment only. More prolonged or more intense bouts require preventives such as verapamil, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an injection into the area of the head where the pain is that decreases nerve activity.
The official guidance need revising to reflect a
