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Cluster headaches


Expert reviewer, Dr Ahamad Hassan, Consultant Neurologist and Stroke Physician
Next review due November 2019

Cluster headaches are very severe headaches that you have on one side of your head. The pain is usually around or behind your eye or temple (the flat part of your head at the side of your forehead). The pain usually comes on quickly and can take many forms, including a boring, burning, squeezing, stabbing or penetrating pain.

Cluster headaches are quite rare, but it’s a life-long condition. If you’ve recently started having them, it’s important to see a specialist. There’s treatment they can offer to try and prevent your headaches as well as to manage them when you get them.

A man thinking

Types of cluster headaches

Cluster headaches get their name because they can occur in clusters (bouts). Each bout is a period of time over which attacks (individual episodes of pain or headaches) happen. Each attack can last between 15 minutes to three hours – but usually they last between 45 and 90 minutes. During a bout (or cluster period) attacks may happen every other day or up to eight times per day. Bouts can follow one of two main patterns: episodic or chronic.

Episodic cluster headaches

Episodic cluster headaches are the most common type, affecting about nine out of 10 people who have cluster headache. With this type bouts last on average between two and 12 weeks – although, they could range from anything between one week and one year. Then the headaches stop for at least a month. You may not have headaches for months or even years. But unfortunately, after a period of time with no headaches, they start again.

Chronic cluster headaches

Chronic cluster headaches are less common, affecting only around one in 10 people who have cluster headache. With this type, you may have no break or only a short break between bouts. Doctors define chronic cluster headache as bouts lasting for at least a year, with less than a month’s break between them. If you have cluster headaches, you may find that the breaks between bouts get longer as you get older.

The type of cluster headache you have might also change over time. One in every three people with chronic cluster headache goes on to develop the episodic type, which is characterised by shorter bouts and longer breaks. However, a small number of people with the episodic type (1 in every 10) instead develop the chronic form.

Who gets cluster headaches

Cluster headaches are more common in men than they are in women. Although in general, they are reasonably rare.

Most people start having cluster headaches between 20 and 40 years old. Some children have been known to have cluster headaches as young as six, but this is very rare.

Symptoms of cluster headaches

The symptoms of cluster headaches are quite specific. You have severe pain on one side of your head, usually centred on your temple or behind your eye. You may get headaches on either side of your head, but once an attack has started the pain stays on that side.

Headaches may come on at the same time each day, often at night. The pain peaks within minutes of the headache starting. The pain itself has been described as the worst pain you can have. People say it can be burning, piercing, boring or sharp. Some people have a burning background pain or feeling of pressure between attacks. The pain can be so bad that you may have suicidal thoughts.

As well as a headache, there are other classic symptoms that occur on the same side as the headache, including:

  • a watery eye
  • a blocked or a runny nose
  • a swollen or drooping eyelid

You may also:

  • have a flushed face or temple
  • feel or be sick – although this is more common if you have a migraine
  • feel agitated
  • be sensitive to light or sound

Nearly everyone with a cluster headache becomes agitated and restless. Most people can’t keep still and may pace up and down or rock back and forth. Sometimes people bang their head on the wall or floor because the pain is so bad. This is one of the signs that distinguishes cluster headaches from migraines. If you’re having a migraine, you’ll usually want to lie very still.

Diagnosis of cluster headaches

If you think you have started having cluster headaches, you need to see your GP. They’ll ask you the following questions, so it’s a good idea to keep a diary of your headaches prior to seeing your GP.

  • How often do you have the headaches?
  • When do you have them and how long do they last?
  • What is the pain like and where do you have it?
  • Do you have any other symptoms?
  • Have you noticed anything that might bring on an attack?
  • Do you take painkillers and if so, do they help?

If you have just started having cluster headaches, your GP will probably ask you to see a neurologist (a doctor who specialises in conditions that affect the nerves and nervous system, including the brain and spinal cord). This is partly because you may need to have a magnetic resonance imaging (MRI) scan to rule out other causes of headache. It’s also because cluster headaches aren’t that common, so a specialist will have more experience in treating them and giving medicines to help prevent them.

How to help yourself

You may have noticed that some things can trigger an attack if you’re already having a bout of cluster headaches. It may help if you:

  • avoid drinking alcohol
  • avoid anything that gives off fumes, such as paint, petrol or perfume
  • go to bed at a regular time each night

It’s also important for you to take any preventive medicines your doctor has prescribed for you. This may help to prevent attacks during a bout and increase the time between bouts of headaches if you have the chronic type. For more information, see our Prevention section below.

Treating cluster headaches

Unfortunately, over-the-counter painkillers don’t help with cluster headaches, but there are other treatments that can help. Your doctor will be aiming to:

  • relieve your pain as much as possible when you have a cluster headache
  • try and prevent further headaches while your bout of attacks lasts

We have more information about preventing cluster headaches in the Prevention section below.

Because they can come on so suddenly, your GP or specialist will need to give you medicines to take at home as soon as a headache starts. There are two main types of treatment:

  • medicines called triptans
  • oxygen

Triptans

These are medicines that are used to treat migraine, but they also work well in treating cluster headache. They work by making the blood vessels in your brain narrower and so help to reduce swelling. The type most commonly used is sumatriptan. Around 15 minutes after having a sumatriptan injection, around eight out of ten people are pain-free or have only mild pain.

You have sumatriptan as an injection under the skin because it works much more quickly than a tablet. A nurse at the hospital or at your GP practice will show you how to give the injection. They can teach someone you live with if you prefer.

If you don’t like the idea of giving yourself an injection at home, there is triptan nasal spray that you can have instead, called zolmitriptan. But this doesn’t work quite as quickly as the injection.

You can’t have triptans if you:

  • have some types of heart condition
  • have had a stroke
  • have high blood pressure

As with all medicines, there are some side-effects. Triptans can cause flushing, tingling, or a feeling of pressure, heaviness or tightness anywhere in your body. They may also cause dizziness or fatigue. Do see your doctor if you are at all concerned about possible side-effects.

Oxygen

You might find it helps to breathe in pure oxygen from an oxygen cylinder. This can relieve symptoms quickly, with few side-effects. There’s some evidence that this works as well as sumatriptans.

Your neurologist or GP can prescribe cylinders to be delivered to you at home. You can use oxygen as many times a day as you need. You need to inhale 100% oxygen for at least 15 minutes at a time, so you’ll have a high flow system and use a face mask.

Causes of cluster headaches

Doctors don’t fully understand why people get cluster headaches. They think the nerve and blood supply to a part of the brain called the hypothalamus may be involved. This controls the body’s biological clock, so could be related to the attacks happening at the same time of day or night.

Cluster headaches can run in families. If you have a parent, brother or sister who has cluster headaches, you have a higher risk of getting them yourself.

There are some other factors that are linked to cluster headaches, but we don’t have enough evidence to say that they are causes, these include:

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

Preventing cluster headaches

There are several medicines that doctors use to try and prevent cluster headaches. Your doctor may call this prophylaxis (pronounced prof-ill-ak-sis) or prophylactic treatment.

Your doctor may give you a supply of prophylactic medicine to keep at home because you’ll need to start taking them as soon as a bout of headaches starts.

Sometimes doctors prescribe steroid tablets for you to take for a short time each time you start taking preventive medicine. This can help to control headaches until the prophylaxis kicks in, which can take two weeks or more.

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

If you have chronic cluster headaches, you may have to take prophylactic treatment long term to prevent another bout. But your doctor may try to take you off the medicine slowly from time to time to see if you can manage without it.

Verapamil

This is usually the medicine that doctors try first to prevent cluster headache. It works by dilating blood vessels and is most commonly used to treat heart conditions.

Verapamil is a tablet that you might take between two and four times a day. Your doctor will gradually increase the dose of verapamil over days and even weeks until you find the dose that controls your headaches. Because verapamil is usually used for heart conditions, you may need to have a heart test called an electrocardiogram (ECG) before you start the treatment and 10 days after each dose increase.

Like all medicines, verapamil has side-effects:

  • constipation
  • flushing
  • dizziness
  • ankle swelling

Other preventive medicines

If verapamil doesn’t work for you, there are other medicines that can help. You may need to try more than one before you find the one that suits you best. For more information, speak to your doctor. They’ll be able to discuss the options with you and help you decide which medicine might be right for you.

Sometimes preventive medicines that have helped in the past stop working so well, so you may have to change tablets from time to time.

Surgery

If medicines are not controlling your headaches, there are surgical treatments. Because there is a risk of complications, your specialist will only suggest surgery if you have tried all other treatments and they haven’t worked.

A treatment called occipital nerve stimulation (ONS) has been promising in research. You have a minor operation to have a small device put under your skin. One part of the device is put under the skin at the back of your scalp and the other under the skin in your chest. Doctors are not entirely sure how this works, but it involves the electrical stimulation of the nerves involved in causing your headaches.

A treatment called deep brain stimulation has also been researched and has shown some promise. It does have risks of serious complications, so your doctor would only suggest this if nothing else has helped. For more information about this procedure, speak to your doctor.

Living with cluster headaches

The severity of the pain from cluster headaches can make them difficult to live with. Your doctor will understand how awful the headaches are and will do everything possible to minimise them.

Your GP will probably want to see you at least once a year to review your medicines and talk about how you are managing your attacks. You can, of course, make appointments between times if you need to. Make sure you are confident about how and when to use the medicines you have and do ask questions if there is anything that isn’t clear. Feeling confident about how best to manage an attack will help you feel more in control.

Do ask family and friends for help when you need to. They can listen to how you are feeling and may be able to help with daily tasks during a bout. There are also online support organisations for cluster headache that provide information and forums where you can talk to other people who know what you are going through. See the Other helpful websites, Further information section below for more details.

Frequently asked questions

  • These three types of headache can all occur in bouts, but are quite different in nature.

    Cluster headaches have been described as one of the worst pains you can have. As well as the typical severe pain on one side of the head, other key symptoms are red, watery eyes, drooping or swollen eyelids and runny nose on the same side as the pain. Because of the severe pain, people having a cluster headache are usually very agitated and may pace up and down or bang their heads.

    Cluster headaches won’t respond to over-the-counter painkillers. You’ll need one medicine for the headaches and another to try to prevent attacks during a bout.

    Unlike cluster headaches, migraines are more common in women. They can be very variable. Pain may be moderate or severe and is on one side of your head, as with cluster headache. The pain may be throbbing and is usually made worse by movement. With a migraine, you’re more likely to have sickness, sensitivity to light or sound, and visual disturbances such as flashing lights or colours. So, unlike cluster headaches, if you’re having a migraine, you’ll usually want to lie down somewhere dark and quiet.

    Some migraines respond to over-the-counter painkillers and some don’t. You may have medicine from your doctor to take when you feel a migraine coming on.

    Tension headaches are the commonest and most of us get one at some time in our lives. Although they are undoubtedly painful, they’re not usually as painful as migraine or cluster headache. They usually respond well to over-the-counter painkillers and most people treat them themselves without seeing their GP.

  • Cluster headaches usually come on quickly, but there might be some signs that you’re about to have one. Some people feel sick. Around one in six people have an ‘aura’ before an attack. This means some sort of neurological disturbance, such as seeing flashing lights or numbness or tingling.

    For many people, cluster headaches follow a pattern. Bouts may happen at the same time of year. Once a bout has started, headaches may come on at the same time each day or 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 updated October 2016
    • Headache – cluster. NICE Clinical Knowledge Summaries. cks.nice.org.uk, last updated November 2012
    • Cluster headache. PatientPlus. patient.info/patientplus, last updated January 2015
    • Cluster headache. The MSD Manuals. www.msdmanuals.com, last updated July 2016
    • Matharu M, Goadsby P. Update on a common neurological problem - cluster headache. Pract Neurol 2001; 1:42–49
    • Cluster headache. Medscape. emedicine.medscape.com, last updated December 2015
    • Imigran Injection. Electronic Medicines Compendium (eMC). www.medicines.org.uk, last updated July 2015
    • Law S, Derry S, Moore RA. Triptans for acute cluster headache. Cochrane Database of Systematic Reviews 2013, Issue 7. Art. No.: CD008042. DOI: 10.1002/14651858.CD008042.pub3
    • Bennett MH, French C, Schnabel A, Wasiak J, Kranke P, Weibel S. Normobaric and hyperbaric oxygen therapy for the treatment and prevention of migraine and cluster headache. Cochrane Database of Systematic Reviews 2015, Issue 12. Art. No.: CD005219. DOI: 10.1002/14651858.CD005219.pub3
    • Guidelines: Diagnosis and Management of Migraine, Tension-type Headache, Cluster Headache and Medication-Overuse Headache (Management of cluster headache: Basic principles). British Association for the Study of Headache. www.bash.org.uk, last updated September 2010
    • Verapamil tablets BP. Electronic Medicines Compendium (eMC). www.medicines.org.uk, last updated April 2016
    • Occipital nerve stimulation. Medscape. emedicine.medscape.com, last updated October 2015
    • OUCH: Organisation for the Understanding of Cluster Headache. ouchuk.org, accessed October 2016
    • Migraine headache in adults. BMJ Best Practice. bestpractice.bmj.com, last updated June 2016
    • Verapamil Hydrochloride. NICE British National Formulary. www.evidence.nhs.uk/formulary/bnf/current, published December 2016
    • Occipital nerve stimulation. Medscape. emedicine.medscape.com, last updated October 2014
    • Personal communication. Dr Ahamad Hassan, Consultant Neurologist and Stroke Physician, December 2016
  • Reviewed by Laura Blanks, Bupa Health Content Team, November 2016
    Expert reviewer, Dr Ahamad Hassan, Consultant Neurologist and Stroke Physician
    Next review due November 2019



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