Unbearable Agony: My Struggle Against the Puzzling Pain of Cluster Headaches
It was a dreary Monday morning in the autumn of 2016. I was working as a educator, attempting to manage a new group of students, when a sharp pain erupted behind my one eye. It was followed by quick stabs, similar to electric shocks. As the school day progressed, the pain subsided and then returned with greater force. Four times that day I left a teaching assistant with activities and ran to the staff bathroom to douse my face with cold water. I took ibuprofen, but the agony remained unbearable.
The headaches returned repeatedly that fall, and once more in the spring, soon establishing an yearly pattern. The autumn months were the most severe, then February and March. I could anticipate the pattern: a warning sensation in the shower, early twinges on the commute, full-blown agony in class by mid-morning. In 2019, a doctor eventually sent me to a neurologist and I was given a diagnosis with cluster headaches.
This condition typically start with intense pain behind one eye that persists for several hours.
About one in 1,000 people suffer by the condition, and men are more often affected. Cluster headaches usually start with sudden, severe agony around a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are associated with red or watery eyes, drooping eyelids or facial sweating. I have the episodic form, which arrives in periodic bouts; some patients have chronic attacks, characterized by the absence of long pain-free periods.
What connects patients is the severity. One research paper rated the pain at 9.7 out of 10, higher than broken bones or pancreatitis. Another discovered a significant percentage of cluster headache patients experienced suicidal thoughts during bouts; the figure dropped to 4% when they were pain-free.
One patient, 74, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being spoiled,” she says. Her symptoms worsened through childhood. Alcohol in her adolescence, like many causes, made things more intense. After having alcohol at her school leaving party, she remembers barely being able to see on the transport home.
Her relatives often mistook her attacks as intoxicated episodes. Understanding finally came from her parent and then from her partner, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs took clerical work after relocating, but often concealed her illness. She was dismissed from one job, in part due to absences during attacks. Her definitive identification came in the early 2000s at a national hospital.
Still, the failure to organize life around unpredictable attacks took its effect. She especially disliked being unable to plan social events, being seen as flaky as a colleague, 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 liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an episode inside a facility.
Headaches have been documented throughout history. “The first account of headache comes by way of the ancient civilizations in 4000BC,” write experts in a book on the topic. They attributed the disease to an evil entity who attacked his victims' heads.
Ancient medical texts suggest unusual remedies for what some experts would classify as a headache disorder. In the medieval times, severe headache was recognised as a separate disorder, with therapies ranging from herbal concoctions to other, more folk remedies.
It was a Dutch doctor who provided the first comprehensive account of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very severe headache happening and vanishing daily at specific hours”.
The disorder were only formally classified by international medical committees in 1988. From the 1960s to the late 1990s, they were believed to be caused by a problem with a key artery that supplies blood to the brain. Leading experts in diagnosing the disorder explain this.
In the late 1990s, scientists published the results of a research project for which they had triggered attacks in patients and observed the attacks in a brain scanner. The data, published in a major journal, showed increased activity of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in pain, and a reduction when they recovered.
Despite such advances, identification remains slow. Jamie Charteris's symptoms began in the 1980s and felt like “a balloon being blown up behind my left eye”. Doctors thought he had a sinus issue; he underwent multiple operations before eventually being diagnosed in 2014, after a physician researched his symptoms.
Neurologists say delays in diagnosing and treatment happen because patients are rarely seen mid-attack. “You're tired and depressed, but not in severe pain,” one says. He proceeds by ruling out other common headache conditions, such as tension-type headache, before confirming the disorder. A thorough patient history is essential: on which part of the head do signs occur? For how long? What time of year? Are there precipitating factors, such as alcohol? Specific characteristics such as redness, drooping eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be sent to dedicated centers. But many first go to emergency rooms or are given inadequate therapies.
A charity trustee, in her late seventies, has suffered from the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her 20s, she had her molars extracted because dental professionals misinterpreted her pain. She thinks the dental profession still need greater education. When another patient sought help from a charity, it was Chapman who replied. The author recalls calling a support line during an bout in early 2021; a calm advisor guided me through oxygen therapy and drugs until the episode passed.
National guidelines on management advise that patients are offered high-dose oxygen and/or a specific medication administered by injection. No tablets or strong analgesics should be used. Prophylactic options include a blood pressure medication, which apparently helps manage the attacks of some individuals.
But leading neurologists argue the official guidelines need revising to reflect a clearer clinical process and help general practitioners avoid incorrect prescriptions. For episodic patients, timing is critical: “The duration of the bout determines the treatment.” Short bouts with infrequent attacks are managed with abortive treatment alone. More prolonged or more severe bouts require preventative medications such as verapamil, sometimes combined with steroids. Many patients also receive a nerve block injection during a bout – an injection into the area of the head where the pain is that reduces nerve signals.
The national guidelines need revising to reflect a
