Welcome to the Australian Cluster Headaches website
Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women.
The pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines; experts have suggested that it may be the most painful condition known to medical science. Female patients have reported it as being more severe than childbirth. Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:
"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."
The condition was originally named Horton's Cephalalgia after Dr. B.T Horton. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache:
"Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."
Indeed, cluster headaches are also known by the nickname "suicide headaches".
The headache research group at RMIT University are currently conducting a clinical trial on tension-type headache funded by the NHMRC. As a part of this research project, they also have an ongoing online survey on tension-type headache.
If you would like to complete the survey, please click here
The clinical trial information is here.
There are people who would welcome a chat with you if you are considering harming yourself as a way to escape the pain. Please contact them.
SANE Australia's Suicide prevention page
Lifeline Australia. Phone 13 13 14
www.lifeline.org.au
For a poison emergency in Australia call 13 11 26
Poisons Information Centre
For life threatening emergencies, call 000 in australia
www.triplezero.gov.au
http://www.healthdirect.org.au/gphelpline
After Hours GP helpline: 1800 022 222
If you're an Australian sufferer of these evil headaches, then you've found the Aussie site dedicated to helping you and your GP find ways to treat the pain in Australia according to Australian health regulations and available drugs/treatments!
Whether you're a sufferer, a supporter of someone or just know someone who gets these evil things, then I hope you find this site a valuable information source. The forum is full of friendly beautiful people who know what it's like to live with cluster headaches, so feel free to join and contribute and ask questions.
About this site
I made this site because I (Roger) have suffered from Cluster headaches since 1994, and there was no Australian site to help Australians. This is not a commercial site, so there will be no advertising here, It's here to help others freely and to lend support when you think you can't go on.
If you get these or care for or live with someone who does, then this site is for you! You'll find the site's members a compassionate group of sufferers and partners/carers who know first hand what it is like when these demons arrive every day, so you're far from alone!
If you have been sent here by someone who suffers these, please see this page to understand what they go through.
Read this ABC Interview with Dr Peter Goadsby, Professor of Clinical Neurology at University College, London, who heads up the Headache Group at London's Institute of Neurology, leaders of research in the area.
BBC Story about Dr. Peter J. Goadsby! - Dr. Goadsby and his research team may have found the cause of cluster headaches. Download the article as a .PDF
As a sufferer, You'll also probably agree that there is a widespread lack of understanding by GPs and specialists - probably due to the rareness of the condition (69 people in 100,000 get them) I always find I know more about it than my GP just from research on the internet.
This can unfortunately cause inadequate treatment of cluster headaches. For example your GP needs to call and get authorisation to prescribe Sumatriptan, (Imigran) and while that is ok, the limit you can get is 5 boxes (10 doses) every 3 months, Which is plainly insufficient. There needs to be a special exception in place for Cluster Headache Sufferers, because as we all know, even if you get just one per day, you're likely to suffer them for at least 3 weeks at a time, which adds up to 21 doses. And that's if you're lucky. However there are ways around it, for example, the pharmacist informed me that my GP can make what is called a 'private' prescription which will bypass that rule.
This site will grow to become the Australian home for 'clusterheads' It will be an information resource and a forum for Australian sufferers of Cluster Headaches
At this site, we can share information and treatments and the latest advances in medicine, and maybe, by collecting info from polls, we may find a link between sufferers that might lead to identifying the cause and eventually a cure. So Join us today and be alone no more!
DISCLAIMER: The information on clusterheadaches.com.au is made available for information purposes only, and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Also, the accuracy, currency and completeness of the information is not guaranteed. The owner of this site does not accept any liability for any injury, loss or damage incurred by use of or reliance on the information. Always seek the advice of your doctor or other qualified health professional. clusterheadaches.com.au makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional before being followed.
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