Excruciating Suffering: My Battle With the Mysterious Suffering of Cluster Headaches
It was a gloomy Monday morning in the autumn of 2016. I worked as a educator, attempting to manage a new group of students, when a intense sensation erupted behind my right eye. This was followed by quick shocks, like lightning bolts. As each class came and went, the pain subsided and then returned with greater intensity. Multiple times that day I handed over a colleague with worksheets and hurried to the school bathroom to douse my face with cold water. I took paracetamol, but the pain remained unrelenting.
The headaches returned frequently that fall, and again in the spring, soon establishing an annual cycle. September and October were the worst, then February and March. I could predict the pattern: aura in the shower, early twinges on the train, full-on pain in class by 9.30am. In 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.
This condition typically begin with severe pain around one eye that lasts for three hours.
Approximately 1 in 1000 people suffer by the disorder, and males are more often diagnosed. Attacks usually start with sudden, excruciating pain around one eye that peaks within a short time and continues for as long as three hours. Episodes come in clusters, every day or several times a day, and are associated with tearing eyes, sagging eyelids or face sweating. I have the episodic form, which arrives in periodic bouts; others have continuous cluster headaches, defined by the lack of long pain-free periods.
What unites sufferers is the severity. One research paper scored the sensation at 9.7 10, higher than bone fractures or other conditions. A separate discovered a significant percentage of cluster headache patients experienced thoughts of self-harm during attacks; the figure dropped to 4% when they were pain-free.
One patient, 74, a long-term patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and hit my head. That was attributed to being a difficult child,” she says. Her condition deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After drinking alcohol at her graduation party, she recalls barely being able to see on the bus home.
Her family often mistook her episodes as drunken behavior. Support eventually came from her father 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 hid her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in 2002 at a specialist hospital.
Nevertheless, the failure to plan life around erratic pain took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be looked after by her children during the incapacitation 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 originates from the Mesopotamians in 4000BC,” write authors in a publication on the topic. They attributed the ailment to an evil entity who afflicted his victims' heads.
Historical healing records suggest unusual remedies for what modern observers would classify as a migraine. 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 European physician who provided the initial detailed description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache occurring and vanishing each day at specific hours”.
The disorder were only officially recognised by international medical societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a problem with a major blood vessel which delivers blood to the head. Prominent specialists in diagnosing the condition explain this.
In 1998, researchers published the results of a study for which they had induced cluster headaches in patients and observed the attacks in a imaging machine. The results, published in a major journal, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in discomfort, and a reduction when they felt better.
In spite of such advances, diagnosis remains delayed. Jamie Charteris's symptoms began in 1986 and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a physician looked up his symptoms.
Specialists say delays in diagnosing and managing happen because patients are rarely seen mid-attack. “You're exhausted and depressed, but not in agony,” one says. He works by ruling out other primary head pain disorders, such as migraine, before confirming cluster headaches. A detailed history is essential: on which part of the head do signs appear? For how long? What time of year? Are there triggers, such as certain foods? Certain characteristics such as tearing, sagging eyelids and stuffy nose help confirm the diagnosis. Once diagnosed, patients may be referred to specialist clinics. But a lot of first arrive to emergency rooms or are given unsuitable treatments.
A charity trustee, in her late seventies, has experienced cluster headaches for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her twenties, she had her teeth extracted because dentists misinterpreted her pain. She believes the dental profession still need greater awareness. When another patient sought help from a charity, it was she who replied. I remember calling a helpline during an attack in early 2021; a calm advisor guided them through oxygen treatment and drugs until the episode eased.
Official guidelines on treatment recommend that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug delivered by nasal spray. No oral painkillers or opioids should be used. Prophylactic options include a blood pressure medication, which apparently soothes the attacks of well-known people.
But leading neurologists believe the guidance need updating to reflect a clearer treatment process and help general practitioners avoid misprescribing. For periodic patients, the treatment window is critical: “The duration of the cycle determines the treatment.” Brief bouts with infrequent attacks are handled with abortive treatment alone. More prolonged or more intense bouts require preventative medications such as certain drugs, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an procedure into the side of the skull where the pain is that decreases nerve activity.
The official guidelines need revising to reflect a
