One third of cluster headache sufferers are unemployed or have lost jobs because of their condition, a study has shown.
Data released by the European Headache Alliance (EHA) today showed that cluster headaches prevent one third of patients from being able to work. The study also showed that sufferers are more likely to have mental health problems.
The EHA presented their findings to the European Parliament today as part of Cluster Headache Awareness Day.
A cluster headache attack involves pain on one side of the head and is usually associated with vision distortion. The condition affects 2 in every 1,000 people and is often misdiagnosed by GPs and other medical consultants.
According to Debbie Hutchinson from the Migraine Association of Ireland (MAI), there is very little focus on correct treatment for cluster headache sufferers in Ireland.
“Only 20% of CH patients are correctly diagnosed at initial presentation of symptoms and it takes on average 6 years to get a correct diagnosis and treatment,” she said.
Ireland also ranked highly among the 38% of EU countries that provide little or no access to reimbursement for key treatments for patients.
Hutchinson said that certain tablets and sprays are available to sufferers in Ireland with a medical card, but that these are limited to a month’s supply. Preventative injections are not available on the medical card or through the drug refund scheme.
“The injections are really the most effective for cluster headaches and their lack of availability puts sufferers under an extra financial burden,” she said.
In the UK, patients can access injections, sprays, and high flow oxygen treatments for free under the NHS. Although the treatments are more widely available, awareness organisations are still critical of attitudes towards cluster headaches.
According to Valarie Hobbs from the Organisation for the Understanding of Cluster Headache (OUCH), sufferers in the UK still have trouble getting the correct drugs prescribed.
“Many GPs presume it is migraine the patient is suffering from and treat accordingly, but what works for migraine does not work for cluster headache. This is why access to a headache neurologist who can accurately diagnose and prescribe is so important,” she said.
Various campaign groups brought the EHA’s study to the European Parliament today to promote better care for cluster headache patients.