What is Cluster Headache?
- Cluster Headache, is a condition considered to be one of the worst pains known to man.
- It affects up to 4 in 1000 people (approx 2000 people in Ireland), similar to the incidence of Multiple Sclerosis and Parkinson’s Disease.
- It affects more men than women making it unusual among headache disorders.
- Family history of CH is rare (only 3-5% of cases are hereditary).
- The word ‘Cluster’ refers to a period of time lasting weeks or months, with an increased number of attacks associated with seasonal changes and light hours in the day.
- Cluster Headache may appear in two distinct clinical forms: episodic and chronic. The most common is the episodic form with 80 to 90% of patients affected and it is characterized by episodes of attacks (also called bouts with one to eight attacks per day but with or without pain free days) and periods of remission of more than 30 days on duration. The typical patient has one bout per year often at the same time. The chronic form is diagnosed after one year of pain without remission or with remission periods of less than one month.
Attacks consist of a severe stabbing pain rapidly peaking at an unbearable intensity, usually lasting between 15 and 180 minutes affecting one side (and nearly always the same side) of the head and usually located in and around the orbit and in the temporal area. The pain is often described as a ‘hot poker’ penetrating one eye.
Attacks recur at typical hours such as the middle of the night and around 3 and 9 p.m.
Out of a number of symptoms at least one will also occur during an attack:
- Eyes may become red and watery
- Nasal congestion
- Running from the nostril
- Forehead and facial sweating
- Constriction of the pupil
- Drooping or swelling of the eyelid
- Physical Agitation and tendency to move around
The exact cause of cluster headache is unknown, but recent findings favour a dysfunction of the pain network.
What is the difference between migraine and cluster headache?
One of the main differences between migraine and cluster headache is that the person with cluster headache, unlike the person with migraine, becomes agitated during an attack and is unable to sit or lie down or find relief in sleeping. Where a migraine can last up to 72 hours, a Cluster Headache lasts less than 3 hours with the intensity of the pain peaking within a few minutes and reducing quickly at the end of the attack.
There is no special test to diagnose cluster headache and so your doctor will need to take a very detailed history of all your symptoms in order to make the correct diagnosis. You may be referred for an MRI or CT scan to rule out other causes for the pain starting suddenly.
You are likely to be referred to a headache specialist in a hospital or headache clinic. This is because this is an infrequent condition, which GP or family doctors do not often treat, not because it is dangerous or life threatening.
Alcohol is one well-known trigger of cluster headache, often bringing on the pain within an hour of drinking. If you have cluster headache you should not drink any alcohol during a cluster period. Once the bout is over you will be able to drink alcohol again.
A significant number of people find that strong smelling substances such as petrol, paint fumes, perfume, bleach or solvents can trigger an attack. Nitroglycerine and similar chemicals are well known triggers of attacks during a bout but not outside a bout. During an episode of cluster headaches you should try to avoid these things.
Research has shown that nearly all cluster headache patients are heavy smokers. Although stopping smoking does not ease the cluster headache, heavy smokers are at an increased risk of developing chronic cluster headache so giving up smoking or cutting down is worth considering.
Some patients find cold water or cold pads applied on the pain location or short-lasting intense physical activity helpful to alleviate the pain.
Whilst there is currently no cure for cluster headache, the treatment has become much more effective in the last 20 years.
Acute treatment is used to stop the pain once it has started. Treating cluster headache can be tricky because the pain becomes extremely severe very quickly – usually within few minutes. Thus the key to treating cluster headache during an attack is speed to reduce the excruciating pain as fast as possible.
Ordinary painkillers that you can buy over the counter are not usually effective, as the pain of cluster headache is too intense and they take too long to work. Also, opioids are not effective.
Oxygen is one of the safest ways to treat cluster headache. You need to breathe the oxygen in at a rate of between 10 and 15 litres per minute using a non-rebreathing mask i.e. one without holes for 15 minutes at the start of the attacks. The treatment usually starts to work within 10 to 15 minutes.
Sumatriptan injections have been found to reduce the pain within 10 minutes during an attack. In general tablets are not effective if you have cluster headache because of the time they take to work.
Sumatriptan and zolmitriptan nasal sprays do help the majority of people although the onset of action may be slower than the injection.
Research on the effectiveness of a number of medical devices is on going.
Keeping a headache diary to identify trigger factors can be helpful in terms of self-management, regaining control thereby empowering the person during a cluster period. Due to the severity of cluster headache, a cluster period can be distressing and isolating; therefore peer-to-peer support is vital for improving coping skills. Patient organisations who have a good medical advisory board should be equipped to provide accurate, reliable information and support to all those bearing this heavy burden.
Preventative treatment is used throughout the entire course of the cluster period in an attempt to reduce the frequency and severity of cluster attacks. A wide range of preventative treatments are available and research is on going on the effectiveness of possible new targeted prophylactic medication.
The most common currently used preventative treatments are:
Verapamil prescribed for cluster headache as research has shown that a daily dose can be effective in both episodic and chronic cluster headache. You will probably need to see a specialist in a hospital or clinic if you are prescribed this drug, because your heart will need to be monitored regularly using an ECG machine whilst the correct dose for you is established. Some patients require fairly high doses of Verapamil and careful monitoring are needed.
Corticosteroids, as tablets or local injections, are given because they are fast acting. They can be used in a short burst for 2 to 3 weeks in decreasing amounts as a first step to break the cycle. They are often used alongside other treatments, which take longer to work. Can only be recommended as transitory treatments in short cycles, as long-term treatments are associated with significant side effects.
Other options that can be considered are lithium carbonate, topiramate, valproic acid, gabapentin and baclofen.
As with any drug treatment you may need to work with your doctor to determine what works best for you. You may need to try several treatment regimes before you discover the best one for you and a referral to a headache specialist can be recommended.
Many people living with Cluster Headache may experience periods of remission and chronic Cluster Headache can turn into episodic however there is no significant predicting factor of long lasting remission. The unpredictable nature of the disorder can have a significant impact and burden on the person living with Cluster Headache and their families.
Steve Verbruggen who lives with Cluster Headache has an online blog where he has shared his personal journey of diagnosis and treatment of cluster headache and how it has impacted his life.
Commandments for Health Professionals
Cluster Headache patients have issued the following 7 Commandments to Health Professionals for better treatment of those who live with Cluster headache:
1. Ensure early and accurate diagnosis and treatment
2. Know and educate colleagues about the clinical signs of cluster
3. Provide accurate & reliable information and dispel the myths
4. Listen to the person, acknowledge the condition and reassure them as you provide the care
5. Recognise the impact & burden on all those affected both at home and at work
6. Encourage the person to speak about their disorder in all aspects of their life and engage with their patient community
7. Ensure easy access to headache specialists and provide on-going support