Canadian Clusterbusters : time to unite
The worst pain of all
Attacks of excruciating pain around the eye and temple, just on this one side. A hot poker pushed inside your face. Your eye tears, your nose runs. For an hour or two, you are in hell. The attack is brutal, leaving you exhausted. And it will probably come back tonight, waking you from sleep. Not again.
Cluster headache is not as common as migraine, but it does impair thousands of Canadians (estimates go from 1/10 000 to 1/1 000). Men are more affected than women. Diagnosis can take years to happen. It is not rare to hear stories of people seeing dentists, ENTs and ophtalmologists before finally getting a diagnosis.
A Cluster Headache association in Canada?
There is no association for cluster headache patients in Canada. Migraine Canada is not only about migraine. We want to serve patients with other headache disorders. We thought that a partnership with a well-established cluster headache association was a good way to start.
Clusterbusters, a charitable organization active in the US since 2000, has won awards and leads initiatives in awareness and research.
Canadians living with cluster headache have specific needs. Access to treatments like triptans and oxygen vary from province to province. Too many physicians don’t know what cluster headache is. Headache specialists are always not easy to find. There is work to do!
A productive partnership
Dr Leroux, Chair of Migraine Canada, contacted Bob Wold, Executive Director and founder of Clusterbusters. The idea was to create a section of Clusterbusters to regroup Canadians. This way, Canadians can have their own mailing list for specific initiatives for research or advocacy, and they can also benefit from the strong US community. The answer was very positive: let’s collaborate!
The next step is to reach out to people with cluster headaches in Canada and encourage them to join. Physicians members of the Canadian Headache Society will be informed of the initiative. The networks of Migraine Canada will diffuse the information.
How to join?
If you live with cluster headache, go to this page to register.
Inform your physician of the initiative, spread the word!
Actions for the future
Access to treatments and increase in awareness are key for cluster headache. We also would like to hear your ideas and concerns. Different actions could include:
- Gathering data on access to triptans and oxygen in Canadian province
- Recording video testimonials on cluster headache
- Diffuse information on new therapies as they become available in Canada
Stay tuned and be well!
THE MIGRAINE TREE
- ACUTE TREATMENTS
- DEVICES AND NEUROMULATIOIN
- PREVENTIVE TREATMENTS
- PROCEDURES AND INJECTIONS
- SELF-CARE AND LIFESTYLE
- SOCIAL LIFE