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SAMHSA ~ Advocacy & Education

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Substance Abuse and Mental Health Services Administration

Washington, DC

March 26, 2012

Cluster headaches inflict much more than just physical pain.  With a nickname of “Suicide Headaches”, the resulting psychological toll speaks for itself.  For this reason, a meeting was arranged with a director of the Suicide Prevention Department at the Substance Abuse and Mental Health Services Administration in Washington, D.C.. (www.samhsa.gov)  SAMHSA works with various agencies (including the National Institute of Mental Health) to develop suicide prevention plans.  They have created the National Suicide Hotline and also fund grants for research/education which help people *before* they get to the point of considering suicide.

During this meeting Kim Robbins, Dr. Larry Schor and I were able to openly discuss with SAMHSA the devastating impact our disorder has on sufferers and the hopelessness many feel.  It is a known fact that persons who endure chronic pain often experience depression and anxiety, which can lead to medication overuse, alcohol dependence, and substance abuse.  We addressed the desperation those with cluster headaches often feel due to lack of effective medical treatments and that many feel forced into resorting to hallucinogens, which have been proven to effectively treat cluster headaches.  With a suicide rate at over 200 times the national average, for many sufferers the choice comes down to two things - taking risks of treatment with illegal substances or permanently ending their pain. 

There are many good reasons to work with SAMSHA.  They have a substantial influence with agencies involved research and are eager to work with us to educate operators of the National Suicide Hotlines.  Likely, the people who answer these critical calls have no knowledge of cluster headaches, which could potentially escalate the distress of a sufferer who calls in – especially if they were given advice about a common migraine.

Currently, we are involved in the development of a cluster headache fact sheet and discussion point materials which will then be disseminated by SAMHSA to the operators of the suicide hotlines.  We ARE known as the “suicide headache” and there are groups that want to help prevent suicide.

As you can see, our advocacy efforts have vastly expanded over the past year.  Our goal is to help people with clusters and their families, and help doesn’t always mean finding the next medication.  Much can be done to improve the quality of  life for people with clusters while we wait for a drug or treatment that works. 

Since the time Clusterbusters was created we have relied solely on volunteers and free will donations to support our involvement in education, research and advocacy.   But, as you can see, there is so much work to do!  We are speaking with people now regarding the need for grants to expand our education efforts, (educating the hotlines, doctors and the public), to create diagnostic tools, and to continue being involved in research leading to effective  treatment programs.  The best way to eliminate the threat of suicide is to eliminate the pain. 

Thank you everyone for supporting Clusterbusters. Very importantly, thank you for getting involved in helping other sufferers through message boards, support groups, and social media such as Facebook.  We’re all in this together!


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