When Andrew Cleminshaw attended a conference in 2014, he never thought he would meet his future wife, Ashley. The two were introduced at a conference on cluster headaches organized by Clusterbusters, a nonprofit patient group. After a long-distance relationship, the two got married in 2018 and now live in St. Joseph, Michigan, with their two daughters.
Cleminshaw, who has suffered from cluster headaches since age 12, feels very fortunate to have married someone who personally understands the pain and disability that’s associated with cluster headaches.
“To not have to explain myself or feel misunderstood about cluster headaches is a big stress reliever,” Cleminshaw, now 32, says. “It’s definitely an experience that brings us together and connects us in ways not many can understand.”
The Cleminshaws are two of millions of people who suffer from cluster headaches.
Here, we’ll cover what cluster headaches are and what you should know about them.
[READ: What Not to Say to People With Chronic Pain — and What to Say Instead]
What Are Cluster Headaches?
Cluster headaches are a type of primary headache disorder characterized by severe, recurring headaches that occur in clusters or groups. These headaches are often considered to be one of the most painful types of headaches and can be extremely debilitating.
These severe headaches are felt on only one side of the face and occur quickly, typically lasting anywhere from 15 minutes to three hours and happen anywhere from one to eight times a day. Cluster headaches can last for months, but there can also be periods of remission that span several months or even years.
“Cluster headache attacks are extremely disabling for patients who are at higher risk of depression and suicidal ideation and face a significant decline in their quality of life,” says Dr. Sarah E. Vollbracht, an associate professor of neurology and director of the Headache and Facial Pain Center at Columbia University Irving Medical Center in New York City.
[Read: Tips for Chronic Pain Relief.]
What You Should Know About Cluster Headaches
Headache disorders are one of the most common health conditions. Globally, more than half of adults reported headache symptoms in the past year, according to a 2023 survey by HealthCanal. The most common headache disorders include migraines and tension-type headaches.
However, cluster headaches are rare when compared to other types of headaches, affecting an estimated one in every 1,000 people. Males tend to have higher rates of cluster headaches beginning around the age of 30, according to the National Institutes of Health.
Here’s what you should know about them:
— Symptoms
— Types
— Causes
— Risk factors
— Triggers
— Differences between cluster headaches and migraines
— Diagnosis
— Treatments
— When to see a doctor
— Warning signs
[READ What Is a Silent Migraine?]
What Are the Symptoms of Cluster Headaches?
Symptoms vary by individual, but some are more common than others, including:
— Extreme pain typically behind or around one eye or side of the face
— Nasal congestion or runny nose
— Noticeable facial sweating
— Pain that comes on quickly, usually within 5 or 10 minutes
— Ptosis, which is the drooping of the upper eyelid on the side of the pain
— Redness and tearing of the eye on the side of the pain
— Restlessness or agitation
— Swelling on the affected side of the face
What Are the Types of Cluster Headaches?
There are two types of cluster headaches:
— Chronic cluster headaches: They are diagnosed when someone has chronic attacks for more than a year without remission or with remission lasting less than 3 months.
— Episodic cluster headaches: These are the most common. A patient will have a period of attacks lasting an average of 4 to 12 weeks, followed by a remission period of at least 3 months, sometimes going years between cluster cycles, Vollbracht explains.
What Causes Cluster Headaches?
While researchers continue to better understand the specific causes that lead to cluster headaches, evidence points to a couple factors that may play a role.
— Abnormal activity in the hypothalamus: The hypothalamus is a brain region responsible for regulating the body’s internal balance. It also influences the autonomic nervous system, which controls unconscious processes like breathing. In this context, it has a specific impact on the ophthalmic pathway, which is responsible for communicating sensations to the brain, such as pain, from the upper part of your face and scalp, such as your eyes, upper eyelids and forehead. Cluster headache attacks typically have at least one autonomic symptom, such as tearing, facial sweating, nasal congestion or runny nose.
“While the causes are not entirely understood, dysfunction of the hypothalamus seems to play a central role. Connections between it, the trigeminal nerve pathways and the autonomic nervous system are involved,” says Dr. Narayan Kissoon, a neurologist at the Mayo Clinic in Rochester, Minnesota.
The hypothalamus is also responsible for the regulation of your body’s circadian rhythm, which is the 24-hour internal clock that is best known for regulating our sleep and awake cycles. These headaches for most come on at similar times of the day and night, as well as the same times of the year. According to a meta-analysis of 16 studies in the Journal of Neurology, attacks predominantly occur between early morning and early evening hours with a peak time of headache onset between midnight and 3 a.m.
— Genetics: There is also a genetic component. Having a first- or second-degree relative who has been diagnosed with cluster headaches increases an individual’s risk. However, no gene has been identified that is clearly associated with cluster headaches, Vollbracht explains.
What Are the Risk Factors for Cluster Headaches?
There is still more research to be done on the causes and risks of developing cluster headaches. Based on current research, you are more likely to develop cluster headaches with the following:
— Family history of cluster headaches
— Frequent or heavy use of alcohol
— Male over age 30
— Prior head trauma or brain surgery
— Smoker
What Are Common Triggers of Cluster Headaches?
Although the exact cause and precise mechanism of cluster headaches has yet to be determined, there are several factors that can contribute to an attack. You can decrease the frequency of attacks, in part, by staying away from common triggers, including:
— Changes in altitude
— Cocaine usage
— Exercise or strenuous activity
— Foods containing nitrates, such as lunch meats
— Loud noises
— Screen time in excessive amounts
— Stress
— Weather changes
More than 60% of adults believe that stress causes their headaches, according to HealthCanal’s report. Spending excessive time in front of a screen, loud noises and poor diet were also listed as top triggers.
Learn what triggers your headaches and make lifestyle changes accordingly. Keeping track of these attacks will help show you a pattern that you can then use to help plan day-to-day activities, such as work meetings or going out with friends. It is also important to make sure to take any preventive medicine that your doctor has prescribed exactly as instructed.
“The most effective strategy to reduce the frequency of cluster headache attacks is to initiate preventative therapy at the onset of a cluster cycle,” Vollbracht says.
How Do Cluster Headaches Differ From Migraines?
Cluster headaches and migraines are often confused because they share many symptoms. However, there are distinct differences between the two conditions, including:
— Frequency: Cluster headaches can come on as many times as eight times per day, while a migraine attack can ebb and flow but is considered one continual headache.
— Gender: Cluster headaches are more common in men, while migraines are more common in women.
— Pain area: The hallmark symptom of cluster headaches is pain on one side of the head, typically behind the eye or forehead. Migraines can have unilateral pain but are known for pain anywhere on the head.
— Pattern: Cluster headaches tend to have a cyclical pattern in times of the day and year, while migraines do not follow a cyclical pattern.
— Timing: Cluster headaches come on very quickly and reach peak pain typically within 15 minutes but are gone within 3 hours. Migraines build up more slowly and can last for days.
How Are Cluster Headaches Diagnosed?
Because cluster headaches are often mistaken for migraines or seasonal allergies, it may be challenging to get a correct diagnosis the first time. If you suspect you have cluster headaches, talk to a neurologist, specifically a headache specialist, who can help you get the right diagnosis quickly.
How Are Cluster Headaches Treated?
There are various types of treatment for cluster headaches that fall into three categories: acute, transitional and preventive. Acute treatments should be taken at the onset of a headache. Treatments in this category include:
— Triptans: This class of medicines help change how your brain processes pain signals and constricts blood vessels that dilate during a cluster headache attack. Vollbracht recommends subcutaneous sumatriptan injections (Imitrex) as it works rapidly or consider zolmitriptan (Zomig) nasal spray.
— High-flow oxygen with a non-rebreather mask: This treatment has been found to be effective in less than 10 minutes for about 66% of cluster headache patients. However, this treatment is typically not covered by insurance. Check with your health insurer first to see if this is an option for you.
— Vagus nerve stimulation (nVNS): This implantable medical device sends mild pulses of electrical energy to your brainstem through the vagus nerve in your neck. The pulses are dispersed to different areas to change the way the brain cells work.
Transitional treatments are meant to break the cycle of cluster headaches. Treatments in this category include:
— Occipital nerve blocks injections: An injection near an occipital nerve (a group of nerves in the back of the head) with a blend of a local anesthetic medication, such as lidocaine and steroids, has been shown to provide temporary pain relief.
— Oral steroid taper: These are a steroid pack taken with the highest dose the first day and progressively lower dose thereafter in order to break a cycle by reducing inflammation.
Preventative treatments are meant to prevent future cluster headache cycles from happening. Medications in the category include:
— Galcanezumab (Emgality): This works by blocking the ability of a protein in the brain and nervous system involved in the transmission of pain, called CGRP, to bind to a nerve receptor.
— Topiramate (Topamax): This medication calms overactive nerves in the body by reducing bursts of electrical activity in your brain and bringing about normal nerve activity.
— Verapamil (Verelan): This is considered the best first line treatment for cluster headaches, according to experts. It works by relaxing blood vessels and increasing the supply of blood and oxygen in the bloodstream.
[Read: How to Find the Best Neurologist.]
When Should I See a Doctor?
See your doctor when you begin having these headaches in order to rule out other illnesses and get started on a treatment plan. Cluster headaches are rare and finding a neurologist that specializes in headaches will help you get a timely and accurate diagnosis.
There is no definitive test to determine a diagnosis of cluster headaches, but a doctor will ask about symptoms, perform a neurological exam and possibly order a brain scan or other tests. Also, talk to your doctor if there is a noticeable change in intensity or frequency of headaches.
What Warning Signs Should I Look Out For?
For most, cluster headaches come on quickly and not necessarily with any warning. Some people, however, will get a migraine-like aura first. A migraine-like aura is an early and temporary warning sign that usually comes on before the full force of the headache actually strikes. It is usually a visual disturbance, but it can also be nausea, sensitivity to light and sound, ringing in the ears or something else that alerts the sufferer to what’s to come.
Bottom Line
Cluster headaches are disabling and intensely painful. The cyclical nature of cluster headaches gives a patient some idea of when to expect them, allowing them to plan accordingly. The good news is that cluster headaches can be managed with a combination of treatments and lifestyle choices.
Following-up regularly with a physician who is experienced in managing cluster headaches is key to managing them effectively, Vollbracht advises.
Cleminshaw is living proof that finding the right doctor makes the biggest difference in treating cluster headaches.
“I’m fortunate to have one of the best doctors who is always keeping his eyes open to help me,” he says.
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Cluster Headaches: 10 Things You Should Know originally appeared on usnews.com
Update 09/23/24: This story was previously published at an earlier date and has been updated with new information.
