What is Cluster Headache?
Cluster headache is a rare but very severe type of headache that affects less than 1% of the population. It is six times more prevalent in men than women and usually begins in the late twenties or early thirties. Contrary to migraine sufferers, those who suffer from cluster cannot lie down quietly in a darkened room, they are often more agitated and active, rocking or pacing up and down.
Attacks typically begin in the middle of the night and consist of a severe stabbing pain that can last between 15 and 180 minutes affecting one side of the head. The side of the head on which the pain is felt can vary between attacks, but it almost never occurs on both sides at the same time. The pain is often described as a ‘hot poker’ penetrating one eye. Cluster headaches can occur several times a day. Attacks come in clusters that can last weeks or months. After each cluster, the attacks can disappear for months or even years.
A number of symptoms may also occur during an attack:
- Eyes get red and watery
- The nose can be blocked or runny
- Sweating from the forehead and face
- Constriction of the pupil
- Drooping or swelling of the eyelid
Cluster Headache can take two forms, episodic and chronic. In episodic, attacks occur on a daily basis over a period of weeks or months and then stop as suddenly as they start and go away for a period of weeks, months or even years, but they will return.
In chronic, the attacks occur regularly with a pain-free remission of less than four weeks in any twelve month period.
The exact cause of cluster headache is unknown, although trigger factors include alcohol, tobacco, irregular sleeping patterns, stress and decreased blood oxygen levels. There is increasing evidence to show that most sufferers of Cluster Headache are also smokers, but this has yet to be confirmed.
What treatments are available?
Treatments for Cluster Headache fall into two main categories, Acute and Preventative, then if these fail, depending on extreme circumstances and criteria, there may be a third option of *surgery. *The research into the effectiveness of the surgical options is still ongoing and inconclusive. These options are not widely available and very expensive to have done.
1- Acute Treatments; – These are used to treat the attack once it has begun, to stop or abort the attack. They include;
- Sumatriptan (Imigran/Imitrex) is the most widely used Triptan for Cluster Headache. It is delivered via subcutaneous injection and has shown that it works very quickly in a high proportion of sufferers.
- Zolmitriptan (Zomig) may help with episodic Cluster Headache, but may not be as fast-acting as either Sumatriptan or Oxygen therapy.
Breathing in pure oxygen (100%) at a rate of between 10 to 15 litres per minute is relatively fast at providing pain relief in most sufferers. It should be inhaled continuously for 15 – 20 minutes using a non-re-breathing mask (the one without the holes) See picture below
The ‘gammaCore’ device is a non-invasive hand held device that produces a mild electrical signal that is transmitted to the vagus nerve through the skin. It’s not certain how it works on prevention of Cluster Headache but it is thought that it works on reducing the amount of ‘glutamate’ that is released in the body.
Click here for a PDF with information or follow the link below to the ‘gammaCore’ website for further information.
**’gammaCore’ is only available with a prescription and authorisation form signed by your physician.
2 – Preventative Treatments – These are used as it states to prevent the Cluster Headache from occurring. They include;
- DHE (Dihydroergotamine) infusion.
3 – Surgery; – There are currently three surgical options for Cluster Headache;
- ONS – Occipital Nerve Stimulation
- DBS – Deep Brain Stimulation
- SPGS – Spheno-Palatine Ganglion Stimulation
ONS is minimally invasive and involves the implantation of a battery pack in either the shoulder or abdominal area with wires extending to the back of the skull. It emits a pulse which helps to stop the pain and reduce the frequency and severity of the attacks. See the Migraine Action leaflet for information on the Occipital Nerve and ONS
DBS is more invasive as it involves implantation of a battery on the posterior hypothalamus area under the brain. Surgery is much more complicated due to the location.
SPGS is the newest method being used for Cluster Headache surgeries. It involves implantation of a tiny device in the cheek which stimulates the spheno-palatine ganglion (SPG) -a bunch of nerve cells which are closely associated with the trigeminal nerve. The SPG has connections to the brainstem, where cluster and migraine attacks may be generated.
What’s Under the Hat?
The European Headache Alliance is running a campaign called ‘What’s Under The Hat?’, #underthehat to encourage sufferers to share stories of how seriously headache disorders affect their lives. The goal of this campaign is to “inspire public compassion for headache sufferers by making the invisible visible and provide a platform to give patients a voice”. Although they ask people who suffer from all headache conditions to join the campaign, the first disorder they are focusing on is Cluster Headache.
They’re getting people talking about the disruption and pain so that headache can be given the priority it deserves. If you want to get involved and share your story, then;
For more information, contact them at firstname.lastname@example.org
What can I do for someone who suffers from Cluster Headache?
If you know someone in work, or have a friend or family member who suffers from cluster, seeing a full-blown attack, especially for the first time can be scary. The person could scream, hit their head a lot, cry, pace, rock back and forth, and sometimes even bang their head off a wall.
Many sufferers are reluctant to let anyone see them in a full-blown attack because;
- of the stress they feel they are putting on others
- the attack is so harrowing
- their dignity is completely pushed aside
- people think they’ve gone mad
- coping with the attack is in itself an ordeal, so having to worry about other people just adds to the stress.
For family and friends this can be particularly harrowing. They want to help, but there’s really nothing they can do. The distress of watching a loved one go through such agony is very distressing.
Most people are decent and want to help in any way they can, but there’s really nothing that anyone can do during the attack but to stay well away. Afterwards, the person may want to talk about what happened and may be grateful for a quiet word or a few moments for someone to listen. Sympathy and support would be appreciated, particularly in a work setting so that the person doesn’t feel they are being inconvenient or making a show of themselves.
If you really want to support someone who suffers from Cluster Headache, then the best thing to do is to educate yourself about the condition. Take a look at the following websites;
Be on standby in case your assistance is needed. Get to recognise the warning signs. Most family members will already be familiar with what to do, but outside of the family home, a sufferer would be grateful to know that someone else is aware of what they need.
Talk to your colleagues about Cluster headache, include the sufferer (if he/she is willing) and show them that you’re being supportive. Sufferers can be happy enough to talk about their experiences and how badly they are affected, if only to get it off their chest, but this also serves as a way of making more and more people aware of the condition. If a sufferer knows they are supported, it can help to take some of the pressure off.
You can also call the Migraine Association of Ireland to come in and talk to your colleagues. We are happy to speak in workplaces about Cluster or any other Primary Headache disorder. There is no cost to you or your business, and a little more understanding of these conditions can lead to a much better work-life for the sufferer and those around them.