The Danish Cluster Headache Association

Dansk Hortons Hovedpineforening is the Danish cluster headache association, the patient organization was formed in 1988.
The purpose of our association is to inform about Cluster Headache, to advise patients and spread the information about this disease to doctors, dentists, specialists, health authorities in order to get a quick diagnosis, the right treatment and to support scientific research.

Many people, who suffer from Cluster Headache, have waited for 10, 15 or 20 years to get the right diagnosis. Their general practitioner may have told them that they had stress and that they should relax, the dentist may have pulled out a couple of teeth, they have been checked by an eye doctor, they have tried acupuncture and reflexology and many different kinds of alternative treatment.
They may have lived with their disease for many years before the patient finally, and maybe by pure luck - meets a person who can give them the right diagnosis and the right treatment. Therefore it is so very important to inform about Cluster Headache and spread the knowledge in order to help people as quickly as possible.

Dansk Hortons Hovedpineforening try to inform in many ways. We publish a newsletter 4 times a year. We place information folders in waiting rooms, in hospitals, in libraries. We have a well visited website and we have a very popular online community where the patients can share experiences. We have a great support and help from Professor Rigmor Jensen from the Danish Headache Center, who is always willing to answer questions from our members.

It is not so easy to be a Cluster headache patient. And it is not easy to get the right understanding from family, friends, employers and surroundings. Therefore it is a great idea that people can meet in the online community to share experience, information and advice with other patients and maybe get the necessary support and understanding.

Some patients have good effect from oxygen. But the mask provided by the health authorities - is not effective or sufficient enough. We can provide a much better cluster headache mask that is 100% sealed and can deliver a concentration of 100% oxygen at a high flow. Many patients have been helped by this mask to get a faster and better result.

In the future we plan to hire a social worker some hours every month for professional advice of members. Many patients have problems paying for medicine and injections, and in some cases people are not granted any economic help from the authorities. Some patients have problems taking care of their job, it may be difficult to have a social life. maybe their family do' not have the right understanding and maybe they need help to get a pension.It is very important to inform and spread the knowledge about Cluster Headache, there are for sure some people out there suffering from the disease without knowing it. Maybe your colleague. maybe your neighbor, your tennis partner or a friend.

It is our impression, though, that our work helps. More and more people get a quick diagnosis and better help nowadays.
The members are necessary for the existence of the association. We have at present about 450 members - each paying 250 kr a year for their membership and it is needless to say, that all the members of the committee work voluntarily and without payment.

Activities

Membership meeting are held annually, at these meetings, members may ask questions directly to a panel of neurologists from Danish headache center and the members can hear lectures and meet other patients.

Published

The association publishes the magazine "HortonNyt" 4 times a year, publish different leaflets about cluster headache and send updated information to doctors, neurologists and other relevant parties.

Online community

The association is also behind the very popular forum www.hortonforum.dk where patients share experiences about the disease.

Website

This website www.hortonforeningen.dk is a very important media as we can update informations at a click of the mouse. Also people searching relevant words in Google can find our website to gain more knowledge.

Looking for patients in the searchengines.

It is important that the website and online community can be found in the search engines, as it is here we find the people who are looking for a diagnosis and the patients who want more information about cluster headache.
This site is structured so that it is search engine friendly, ie. Google and other search engines can easily read it and present our informations in search engine results.

We pay Google to find the patients

Every time a person seach for relevant words (danish) in Google, we paid Google (Adwords) to show a small ad asking the searcher if the pain is located in one eye only. If yes click this ad.