Cluster Headache

"The Suicide Headache"

What Makes Cluster Headache One of the Most Severe Pains Known to Man?

Cluster headaches are attacks of severe or extreme stabbing pain centered around one eye and temple that peak within a few minutes of onset. The pain usually lasts between 15 and 180 minutes and occurs every day or every other day up to eight times per day, typically in cycles lasting weeks to months. Most attacks occur at night. Many people who have cluster headaches experience the attacks at the same time of day and during the same time of year. For some people, they are related to the seasons. There are periods of remission between cycles that last for months or even more than a year. Cluster headaches are more common in males, with a 3:1 male to female ratio, and have an onset of age 20-40.1 

Cluster headache is the most common form of trigeminal autonomic cephalalgia (TAC) affecting approximately 1 in 1,000 people.1 TACs are a set of headache disorders classified as attacks of intense, trigeminal nerve pain with the presence of at least one autonomic symptom.

The pathophysiology of cluster headache remains unclear but studies have found connections among the trigeminovascular pain system, the hypothalamus and the autonomic system in cluster headache patients. Studies have also found changes in cortisol and melatonin levels as well as decreased serum testosterone levels in men during an active bout.1,2 

Triggers for cluster headache include alcohol consumption, exercise, stress, heat and changes in time or altitude. They only impact the headache during an active cycle of cluster attacks but not during the periods of remission.

A. At least five attacks fulfilling criteria B-D
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes (when untreated)
C. Either or both of the following:

  1. at least one of the following symptoms or signs, ipsilateral to the headache:
    • conjunctival injection and/or lacrimation
    • nasal congestion and/or rhinorrhea
    • eyelid edema
    • forehead and facial sweating
    • miosis and/or ptosis
  1. a sense of restlessness or agitation

D. Occurring with a frequency between one every other day and 8 per day
E. Not better accounted for by another ICHD-3 diagnosis.3

Episodic cluster headache

Attacks fulfilling criteria for Cluster headache explained above and at least two cluster periods lasting from 7 days to 1 year (when untreated) and separated by pain-free remission periods of ≥3 months.4

Chronic CLuster Headache

Attacks fulfilling criteria for Cluster headache explained above, and occurs without a remission period, or with remissions lasting <3 months, for at least 1 year.5

Types of cluster treatments

Barriers to headache treatment

  • "Emgality® is the first and only medication approved by the FDA to reduce the number of attacks."6
  • The Centers for Medicare and Medicaid Services (CMS) limits sumatriptan to 10 treatments per month.7
  • CMS has determined that oxygen does not improve health outcomes for cluster headache, despite research proving otherwise.8
  • CMS denied coverage for home oxygen use, therefore the prescription of opioids has increased.7
  • Psilocybin and LSD are currently listed as schedule one drugs and are federally illegal making clinical trials difficult to determine efficacy. 9

Clusterbusters

Clusterbusters is a non-profit organization that supports research for better treatments and a cure while advocating to improve the lives of those struggling with cluster headaches. Their mission statement is to educate, advocate and provide support for those living with this invisible condition. They were founded in 2002 by Robert Wold to begin research on cluster headaches and to work with labs for development of new and improved treatment options.8 Clusterbusters hosts a patient conference every September for patients, loved ones, and medical professionals to learn more and find support.

Preventing Episodic Cluster Headaches with Emgality® or Psychedelics: What You Need to Know

By Ashley Hattle | March 18, 2021

The Covid-19 pandemic has taken more than two million lives worldwide, sickened over 100 million1, and turned billions of lives upside down in the last year.

Breaking Down Trigeminal Autonomic Cephalalgias

By Ashley Hattle | October 8, 2020

TACs are characterized by attacks of pain on one side of the head along with autonomic symptoms on the same side, such as a tearing, red eye, stuffy or runny nose, and facial sweating.

Cluster Headache Patients Face An Uphill Battle for High-Flow Oxygen

By Ashley Hattle | July 31, 2020

There are numerous barriers preventing cluster headache patients from getting a timely and correct diagnosis, let alone accessing the most effective treatment—high-flow oxygen therapy.

Why Are Cluster Headaches Affected by the Seasons?

By Ashley Hattle | March 27, 2020

Why cluster headaches are linked to seasonal changes is likely due to the length of the days. How much sunlight there is in a day changes as the seasons shift, making nights shorter and days longer or vice versa.