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Cluster headaches


Expert reviewer, Dr Jeremy Rees, Consultant Neurologist
Next review due July 2022

Cluster headaches are very painful headaches that affect one side of your head, often around your eye. They come on suddenly, occurring in a cluster (bout) of attacks that lasts for several weeks or months.

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What is a cluster headache?

Cluster headaches get their name because the headaches occur in clusters (bouts) that last for weeks or months. During a cluster, some people have a headache attack once every other day, while others may have up to eight attacks a day. Each individual attack usually lasts for 30 minutes to an hour but can last for up to three hours. Each cluster of headaches is separated by a period without any attacks, which can last for months or years.

If you have cluster headaches, you may find that they happen at the same time of day or year and may wake you from sleep. Cluster headaches are one of the most painful types of headache but are very uncommon. Most people start having cluster headaches when they’re aged between 20 and 40 years. They’re more common in men than in women.

Types of cluster headache

Cluster headaches can follow one of two main patterns: episodic or chronic.

Episodic cluster headaches

Episodic cluster headaches affect about nine out of every 10 people who get cluster headaches. The clusters usually last for two to 12 weeks but can last from as little as one week to as long as one year. When the cluster ends, the headaches stop for at least one month before they start again.

Chronic cluster headaches

Chronic cluster headaches affect around one in every 10 people who get cluster headaches. You may have no break or only a short break between the clusters. Doctors define chronic cluster headaches as bouts lasting for at least a year, with less than a month’s break between them.

Cluster headaches are a lifelong condition, but the pattern of clusters can change over time. Some people find that the breaks between their clusters get longer as they get older. If they have chronic cluster headaches, these may develop into episodic cluster headaches. But it can also happen that the clusters of episodic headaches get closer together and eventually become chronic cluster headaches with no gaps between them.

Symptoms of cluster headaches

If you have a cluster headache, you’ll have excruciating pain on one side of your head, usually around your temple or behind your eye. This pain comes on suddenly and peaks within around ten minutes. Most headaches last for 30 minutes to an hour but can last for up to three hours.

The pain varies from person to person; it may be sharp, burning, squeezing or stabbing. Many people say it’s the worst pain they’ve ever experienced. The pain can be so bad that they have suicidal thoughts.

You may notice your headaches follow a specific pattern, always occurring at the same time of year or day or night. Between attacks, you may have a constant background headache.

During an attack, you may have other symptoms too, including:

  • a watery eye
  • a blocked or a runny nose
  • a swollen or drooping eyelid
  • a sweaty or red face or forehead
  • feeling a bit sick

Nearly everyone with a cluster headache gets agitated and restless. Most people can’t keep still and may pace up and down the room. Some people even bang their head against the wall because the pain is so bad. This is one way to tell the difference between cluster headaches and migraine – if you have a migraine, you’ll usually want to lie very still. For more information, see our FAQ: What’s the difference between a cluster headache and a migraine? below.

Diagnosis of cluster headaches

If you think you’re getting cluster headaches, see your GP. There’s no specific test for cluster headaches, so you’ll usually be diagnosed from your symptoms.

Your GP will ask you some questions. You may find it helpful to keep a diary of your headaches before you go to your appointment. Make a note of:

  • how often you get the headaches
  • when you have them and how long they last
  • what the pain’s like and where it is
  • any other symptoms you may have
  • if anything in particular triggers your headaches
  • if you take painkillers and, if so, whether or not they help

If your GP thinks you may have cluster headaches, you’ll probably be referred to a specialist doctor called a neurologist. You may need to have a magnetic resonance imaging (MRI) scan to see if anything else could be causing your headaches.

Self-help for cluster headaches

You’ll usually need to take prescribed medicines to control the pain of a cluster headache. But if you’re in the middle of a series of cluster headaches, you may notice that certain things bring on the individual attacks. It may help if you:

  • avoid drinking alcohol
  • stop smoking
  • avoid warm temperatures
  • avoid anything that gives off fumes, such as paint or perfume
  • get enough sleep — go to bed at a regular time each night
  • avoid daytime naps

Treatment of cluster headaches

Managing your cluster headaches usually involves a combination of treatments. Your doctor will be able to discuss the pros and cons of the different treatments to find the best one for you.

Over-the-counter painkillers aren’t strong enough to ease cluster headaches. But you may be able to use other treatments to help relieve your symptoms as soon as the headache starts. These include:

  • prescribed medicines called triptans
  • oxygen
  • a handheld device called a transcutaneous vagus nerve stimulator

You could also try to avoid anything that seems to bring on a cluster headache or makes your headaches worse. For more information on this, see our section: Self-help for cluster headaches above.

It’s usually difficult to ease cluster headaches completely by just taking medicines when you get an attack. Your doctor will usually also prescribe medicines that help to prevent more headaches during a cluster. For more information on this, see our section: Prevention of cluster headaches below.

Medicines for cluster headaches

Cluster headaches come on very suddenly, so you need to make sure you always have your treatments with you to use as soon as an attack starts.

There are two main types of treatment:

  • medicines called triptans
  • oxygen

Triptans

Triptans are used to treat migraine, but also work well for cluster headaches. They make blood vessels in your brain narrower.

You’ll usually be prescribed a sumatriptan injection, which works much more quickly than a tablet. The injection can usually stop a cluster headache in five to ten minutes. You inject the sumatriptan under your skin – your doctor or nurse will show you how to do this.

If you don’t like the idea of giving yourself an injection, you can use a triptan nose spray, called zolmitriptan. But this doesn’t work quite as quickly as the sumatriptan injection.

You can’t have triptans if you:


Triptans can cause some side-effects, including:

  • feeling or being sick
  • aches and pains
  • dizziness
  • breathing difficulties
  • extreme tiredness

See your doctor if you’re using triptans and are worried about any side-effects.

Oxygen

You may be able to ease your headaches by inhaling pure oxygen from an oxygen cylinder for 10 to 20 minutes at a time. You’ll need to use a special high flow system and a face mask. Your doctor can prescribe cylinders to be delivered to you at home.

Oxygen has very few side-effects and you can use it as often as you need to. But it’s very important not to smoke if you have oxygen because this poses a serious fire risk.

Transcutaneous vagus nerve stimulation

Transcutaneous vagus nerve stimulation is a relatively new treatment for cluster headaches. It may be recommended by your doctor if other treatments aren’t working. You can use it to treat pain during an attack and every day to prevent more attacks.

The treatment uses a small, portable handheld device that’s around the size of a mobile phone. You hold it against the skin on your neck for two minutes at a time. It delivers a low electric current to the vagus nerve in your neck, which then changes the pain signals around your body. Research shows that the device can be safely used several times a day.

Prevention of cluster headaches

You can take several medicines to prevent cluster headaches. Your doctor may give you a supply of these to keep at home because you need to start taking them as soon as a cluster starts.

Sometimes, doctors prescribe steroid tablets as well. You may take these for a short time whenever you start a course of preventive medicines. This can help to control your headaches while you’re waiting for the preventative medicines to work – sometimes this takes a couple of weeks.

If you have episodic headaches, your doctor will ask you to try coming off your preventive medicine slowly once you’ve been headache-free for two weeks. You won’t need to take these medicines again until another cluster starts.

If you have chronic cluster headaches, you may have to take preventative medicines all the time. But your doctor may try to take you off the medicines slowly from time to time to see if you can manage without them.

Verapamil

Your doctor will usually prescribe verapamil first. Verapamil works by relaxing blood vessels and is often used to treat heart conditions.

You may need to take verapamil tablets between two and four times a day. Your doctor will gradually increase the dose over days and even weeks until you find the best dose to control your headaches. Because verapamil can affect your heart, you may need to have an electrocardiogram (ECG) while you’re taking it.

Verapamil can cause some side-effects, including:

  • dizziness
  • feeling or being sick
  • flushing
  • ankle swelling

Other preventive medicines

If verapamil doesn’t work for you, there are other medicines that can help. You may need to try a few of these to see which one suits you best.

Sometimes preventive medicines that have helped in the past stop working so well, so you may have to change tablets from time to time. For more information on preventative medicines, speak to your doctor.

Surgery

If medicines aren’t controlling your headaches, your doctor may suggest surgery, but only if you’ve tried all of the other treatments. There are two main types of surgery.

  • Occipital nerve stimulation (ONS) involves a minor operation to put a small device under your skin. One part of the device is put at the back of your scalp and the other in your chest. Doctors aren’t exactly sure how this works, but it seems to electrically stimulate the nerves that cause headaches.
  • Deep brain stimulation involves implanting stimulating electrodes into your hypothalamus (in your brain). This can cause serious complications, so your doctor would only suggest this if nothing else has helped.

Causes of cluster headaches

Doctors don’t fully understand why some people get cluster headaches and others don’t. They think the nerve and blood supply to a part of the brain called the hypothalamus may be involved. Your hypothalamus controls your body clock, which may be why your attacks often happen at the same time of day or night.

Cluster headaches can run in families. If your parent, brother or sister has cluster headaches, you may be more likely to get them too.

Some research shows that certain factors may make you more likely to get cluster headaches. These include:

  • having had a head injury in the past
  • being a heavy smoker
  • drinking a lot of alcohol

Living with cluster headaches

It’s natural to worry when you have your first cluster headache. The pain can be so bad that you find it hard to cope. It’s important to make sure that you have your treatments available at all times. If you’re not sure how or when to use your treatments properly, speak to your doctor or a pharmacist.

Your doctor will probably want to see you at least once a year to review your medicines and talk about how you’re managing your attacks. Keep a diary of your cluster headaches and which treatments have or haven’t worked well. You can also discuss managing and avoiding common triggers, such as alcohol and substances giving off strong fumes.

Cluster headaches can have a big effect on all aspects of your daily life – work, family and relationships. The symptoms can be very unpredictable and you don’t know when your next cluster will begin. If you’re feeling down or anxious, it’s important to speak to your doctor.

Ask family and friends for help when you need it. They can listen to how you’re feeling and may be able to help with daily tasks during a cluster. You can also join a support organisation to learn more about cluster headaches and chat to other people who know what you’re going through. See our section: Other helpful websites below for more details.

Frequently asked questions

  • Cluster headaches and migraine cause similar symptoms, such as a very bad one-sided headache, but there are differences between them.

    • Cluster headaches cause an excruciating stabbing pain, while migraine pain is usually like a deep pulse.
    • Cluster headaches are usually associated with a watery eye, blocked or runny nose and swollen or drooping eyelid.
    • Cluster headaches tend to start at night or very early in the morning, while migraine tends to start during the day.
    • A cluster headache usually lasts from 30 minutes to an hour, but can last up to three hours, while a migraine usually lasts from four to 72 hours.
    • During a cluster headache, you’re likely to feel agitated and restless, but during a migraine you’ll want to lie very still in a dark room.
    • If you have a migraine, you’re also more likely to be sick and be extra sensitive to lights and noise.
  • Cluster headaches usually come on quickly, but you may notice some signs before you have one. Around one in six people have an ‘aura’ before an attack, seeing flashing lights or feeling numbness or tingling.

    For many people, cluster headaches follow a specific pattern, occurring in a series (cluster). Some people have a cluster headache once every other day, while others may have one up to eight times a day. These clusters often happen at the same time of year. Each headache attack often starts at the same time every day or may wake you up in the middle of the night.


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Related information

    • OUCH (UK) - Organisation for the Understanding of Cluster Headache UK
      01646 651 979
      www.ouchuk.org

    • Cluster headaches. BMJ Best Practice. bestpractice.bmj.com, last reviewed February 2019
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    • Cluster headache. PatientPlus. patient.info, last edited April 2018
    • Guidelines for All Healthcare Professionals in the Diagnosis and Management of Migraine, Tension-type Headache, Cluster Headache and Medication-Overuse Headache. British Association for the Study of Headache. www.bash.org.uk, published 2010
    • Cluster headache. The MSD Manuals. www.msdmanuals.com, last full review/revision June 2018
    • Migraine. NICE British National Formulary. bnf.nice.org.uk, reviewed March 2019
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    • Sumatriptan. NICE British National Formulary. bnf.nice.org.uk, reviewed March 2019
    • Zolmitriptan. NICE British National Formulary. bnf.nice.org.uk, reviewed March 2019
    • gammaCORE for cluster headache. NICE Medtech Innovation Briefing. MIB162, October 2018. www.nice.org.uk,
    • Transcutaneous stimulation of the cervical branch of the vagus nerve for cluster headache and migraine. NICE Interventional Procedures Guidance, IPG552, March 2016. www.nice.org.uk
    • Goadsby PJ, et al. Non-invasive vagus nerve stimulation for the acute treatment of episodic and chronic cluster headache: A randomized, double-blind, sham-controlled ACT2 study. Cephalalgia 2017; 38(5):959–69. www.ncbi.nlm.nih.gov
    • Verapamil hydrochloride. NICE British National Formulary. bnf.nice.org.uk, reviewed March 2019
    • Occipital Nerve Stimulation. Overview. Medscape. emedicine.medscape.com, updated October 2018
    • Cluster headaches: the basics. OUCH UK. ouchuk.org, accessed April 2019
    • Vollesen AL, et al. Migraine and cluster headache – the common link. J Headache Pain 2018; 19:89. thejournalofheadacheandpain.biomedcentral.com
    • BTS Guidelines for Home Oxygen Use in Adults. British Thoracic Society. Thorax Int J Respir Med 2015; 70(1)
  • Reviewed by Michelle Harrison, Specialist Health Editor, Bupa Health Content Team, July 2019
    Expert reviewer, Dr Jeremy Rees, Consultant Neurologist
    Next review due July 2022



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