Treatment for cluster headaches has entered the 21st century! With solutions beyond drugs.
Cluster headaches are also known as "suicide headaches", with suicide the terminal solution to the excruciating pain. The searing, stabbing pain on one side of the head starts somewhere deep in the brain and pulses out through the eye, with the agony lasting anywhere from 15 minutes to 3 hours.
Fortunately, cluster headaches are rare, affecting only about 0.1 to 0.2% of the population. Anyone can get them, but they are more common in men and tend to start in their 30s or 40s.
Pattern of attacks
As the name suggests, cluster headaches happen in time-bound clusters, with a spell lasting several weeks or months at a time (typically 4 to 12 weeks).
Then without warning, they disappear. A symptom-free period follows, which lasts months or years before the next cluster starts again.
People tend to get cluster headaches at the same time each day. For example, they often are woken up with a headache within a couple of hours of going to sleep.
They'll often get cluster headaches every year for many years, and they may be lifelong, happening at similar times of the year, commonly in the spring and autumn.
The consolation is that they get less severe with age, with the frequency increasing and lessening intensity.
My experience: Headaches began in my early 20s with annual clusters, usually around April. The duration of the cluster period was about a month, with headaches every night at about 3 or 4 am. I avoided alcohol at all costs as it was a rapid trigger.
During the last few years, the time between my clusters has increased, and the headache intensity has diminished.
Symptoms of a cluster headache
It's usually felt around the eye, temple and sometimes the face. With the pain felt on the same side for every attack.
Cluster headaches begin quickly with little warning—the sharp, burning, stabbing pain soaring in intensity.
With one or more of the following symptoms:
- a red and watering eye,
- drooping and swelling of one eyelid,
- a smaller pupil in one eye,
- a sweaty face,
- a blocked or runny nostril.
The pain generally lasts between 15 minutes and 3 hours and typically occur between 1 and 8 times a day.
These fierce attacks make the victim restless and agitated because the pain is so intense, causing them to react by rocking, pacing or banging their head against the wall or floor.
In one of my episodes, I resorted to chewing a bunched up curtain, desperately trying to find relief. My other desperate measures included rubbing ice blocks along the pain path on the top of my head or lying on an ice-cold tiled floor in the middle of winter.
What causes cluster headaches?
The exact cause of cluster headaches is unclear, with activity in the section of the brain called the hypothalamus being a possible cause.
People who smoke, or have smoked, have a higher risk of getting cluster headaches. However, once these headaches have started, giving up smoking is not a cure.
Some people who suffer from cluster headaches have other family members who also get them, possibly suggesting a genetic link.
Cluster headache attacks can sometimes be triggered by drinking alcohol or strong smells, such as perfume, paint or petrol.
When to get medical advice
The first time you experience what you think maybe a cluster headache. Endure it for a few weeks; if the headaches suddenly disappear, it's probably a cluster headache.
Most general practitioners, and many specialists, are clueless about cluster headaches. They'll ask you about your symptoms and may refer you for tests.
In my case, I suffered from these headaches about yearly for about 30 years. Then thanks to the internet, I found a publication on Medifocus that helped me with my self-diagnosis. There was also a growing resource with many personal stories.
Much advice is to consult with medical practitioners, but this may be a waste of time as this is such a rare condition.
Self-help may be the best solution!
Treatment for cluster headaches
Cluster headaches are not life-threatening, but they cause severe pain and significantly affect the quality of life during the cluster.
Over-the-counter painkillers, such as paracetamol, are not effective for cluster headaches because they're too slow to take effect. Instead, consider one or more specialist treatments.
Three main treatments are available to relieve pain when taken soon after a cluster headache starts.
- sumatriptan injections – which you can give yourself up to twice a day
- sumatriptan or zolmitriptan nasal spray – which is an alternative to having injections
- oxygen therapy – where you breathe pure oxygen through a face mask
These treatments usually relieve the pain of a cluster headache within 15 to 30 minutes.
The Organisation for the Understanding of Cluster Headache (OUCH UK) has more information about the medicines used to treat cluster headaches.
Preventing cluster headaches
Avoiding the triggers of cluster headaches can help prevent them.
For example, do not drink alcohol during a cluster headache bout. Avoid strong-smelling chemicals, such as perfume, paint or petrol, which can trigger an attack.
Becoming overheated during exercise may also bring on a cluster headache attack in some people. For me, I can only think of two headaches that could be directly connected to exercise.
Smoking increases the risk of getting cluster headaches, so this may be a good time to stop if you smoke.
Your doctor may prescribe medicine to prevent cluster headaches during a cluster.
Start the treatment when the headaches begin and continue until the bout appears to have stopped.
Verapamil is the primary treatment for preventing cluster headaches - with a tablet taken several times a day. Verapamil can cause heart problems in some patients, so be aware.
Consider other treatments if verapamil is not helpful. These may include corticosteroids, lithium medicine and local anaesthetic injections into the back of the head (occipital nerve blocks).
Preventative treatments can vary in effectiveness from person to person.
You may need to try a few different treatments before the attacks are under control.
Transcutaneous vagus nerve stimulation (TVNS)
Transcutaneous vagus nerve stimulation (TVNS) is a relatively new treatment that uses low-voltage electrical currents to stimulate a nerve in the neck. The device designed to both relieve pain and reduce the number of cluster headaches.
TVNS works by placing a small handheld device (about the size of a mobile phone) on the side of the neck and gradually increasing the electrical current's strength until feeling small muscle contractions under the skin and then holding the device in position for about 90 seconds.
TVNS can be used to treat cluster headaches when you get them and can also be used between attacks to try and prevent them from happening. But TVNS, like most cluster headache remedies, may not help everyone.
Read the National Institute for Health and Care Excellence (NICE) guidance about TVNS for more information.
There's also a new portable TVNS device called gammaCore. NICE has said that gammaCore can be effective for some people and reduce the need for medicines.
Stimulation device implantation
II you've had cluster headaches for a long time and other treatments have not worked, the final solution may be a surgically implanted stimulation device.
Under general anaesthetic, a small electrical device is implanted in the side of the face. The device emits electrical currents that stimulate an area of the parasympathetic nervous system associated with cluster headaches.
When you get a headache, you activate the device (up to a predetermined maximum dose) by placing a handheld unit on your cheek over the location of the implanted device.
As with TVNS, treatment aims to relieve pain and reduce the frequency of cluster headache attacks.
NICE has recommended that the treatment is safe for short-term use (up to 2 months) under close specialist supervision.
For more information, read the NICE guidance about the TVNS device for the treatment of cluster headaches.
Help and support
Living with cluster headaches can be very difficult, particularly if you have long-term (chronic) cluster headaches.
You may find it helpful to get further information, advice and support from organisations such as OUCH (UK).