A new survey, which aims to determine the prevalence of agonising cluster headaches, is to be launched next week.
According to the Migraine Association of Ireland (MAI), which is launching the survey on March 21, cluster headaches are often misunderstood or misdiagnosed and Ireland has one of the poorest records in Europe in terms of providing treatment and medication.
Cluster headaches affect around one in every 1,000 people and are acknowledged as being one of the worst types of pain there is. They usually involve unilateral (one-sided) pain that is centred over one eye, one temple or the forehead.
Those affected are usually unable to keep still during an attack, with some pacing the room or even banging their heads against a wall until the pain subsides.
In around 80% of those affected, the ‘clusters' of head pain last for four to 12 weeks, once a year, often in the Spring or Autumn. They may then disappear for several months or even years - these are known as episodic cluster headaches.
The remaining 20% of people affected do not have any pain-free intervals and are said to have chronic cluster headaches.
The MAI noted that oxygen is one of the safest ways to treat cluster headaches. In order for this to work effectively, a person needs to breathe the oxygen in at a rate of between seven and 15 litres per minute. The treatment usually starts to work within 15 to 20 minutes, although for some people, the attack is delayed rather than stopped altogether.
However currently in Ireland, oxygen for cluster headaches is not listed under the Drug Refund Scheme and is not available on the medical card.
Cluster headaches can also be treated with some migraine-specific medications that are available in tablet form, injections and/or nasal sprays. However, not all of these medications are available on prescription and on the medical card in Ireland, and the injections can be difficult and costly to access in Irish pharmacies.
The MAI will launch its national survey on Cluster Headache Day (March 21) with the aim of assessing the prevalence of cluster headaches in Ireland and the ease of access people have to oxygen and other medications that have proven effective.
For more information on the MAI, click here
Thank you. The worldwide cluster headche patient community relies on the care and interest of neuro researchers, especially to support the use of oxygen. Because of it's efficacy, affordability and availability, denying medical grade oxygen to a diagnosed cluster headache patient borders on being inhumane. Count on me to share your survey with 6,000 + members of an online patient to patient support group
In every country should be oxygen available for cluster headache patients. I support what Cindy says and will share the survey in our Dutch support group (more then 900 members) and on our public facebook page. I will also ask the Italian support group to sign the survey. Wish you all the best!