Doc's Cluster Headache Journal

Monday, June 27, 2011

Serious research? At Last!

I know I am probably behind the curve on this information... I have been in "lock-down" mode. Focusing all my scant energies on a 2.5 year old and keeping up with my work. But look! Much like a frigg'in ground hog after a long winter, I am poking my head out to Check my shadow, and post in case anyone still comes across these scratches in the clay.

A friend pointed out this article to me today.

Now, although I don't beat the drum about it on this blog, I think most cluster sufferers are aware that that people have been (apparently) getting results with psychedelics for many years. I think it has been tough for many of us to get on board with this idea. As I understand it, the people in the cluster community who have braved this path use very small doses of psilocybin or even morning glory seeds to self medicate. Damn, I don't even like taking well tested pharmaceuticals over long periods of time (under a doctors care mind you...) I don't think I would want to "roll my own" so to speak and although I have made mention of it on this blog, I never felt right about popularizing the idea based solely on what seemed to be anecdotal evidence. This stance was sometimes much to the chagrin of die-hard "shrooms cure clusters" fans. I am not really prudish about the substances themselves, I am not entirely a stranger to them or their effects. I mostly have issue with desperate people using potentially dangerous compounds over LONG periods of time with no understanding of how such use could effect them. I can say I have been very tempted to try it on many occasion. You know how it is, you really will try anything when the pain is at its worst. But even though I was interested, I never planed ahead before a cycle hit and besides I don't have the "connections". Well maybe I do, I am a musician after all... ; )

So to me, someone finally doing even a small study like this is very good news. I don't know that I have seen a study like this before. Perhaps it will lead to a safe, measured treatment or at least a greater understanding of what may help. So many people need an answer but just don't want to risk other aspects of their health in the process struggling for it.

Hey, If this does lead to an effective widely used treatment, we will all owe a big debt of thanks to the crazy bastards that first said to themselves... "Damn! This cluster is killing me! I wonder if it would help if I dropped some acid?" Personally, I don't think I would have wanted to take that trip with them.

7 Comments:

  • In California where we have medical marijauna, I know first hand a couple frinds who use it for migraines and it works ammayzingly. I recently saw some ideas for new research on some news mags like cnn health and The Joural with Joan lunden that were talkingh about some new treatments. lets keep our fingers crossed.

    By Blogger Ldavis 74, at 9/05/2011 11:20 AM  

  • Definitely agree that news about scientists doing more research into headaches is good news! Hopefully they get the answers many people need!

    By Anonymous Fight Migraine Headaches, at 9/13/2011 5:30 AM  

  • Wonderful to see your blog is written in a fair manner and without the hype the media insists on using when getting the word out that this research does indeed have potential.

    One small faction of the cluster headache community known as Clusterbusters non-profit organization has teamed up with an organization called the Alliance for Headache Disorder Advocacy (AHDA). This group is an "organization whose members are other organizations". Teaming up in this way gives CH a much more powerful voice in areas such as research & NIH funding for those research.

    The current "action" plan of The Alliance is speaking to Congress in Washington D.C. in March, 2012 to ask for funding.

    Thanks for blogging about our disorder & I wish you pain free days ahead.

    CR

    By Blogger 1961mom, at 2/29/2012 1:09 PM  

  • Thanks for your kind words!

    In the past, I have met with a small bit of attitude from a few people due to my cautious opinions regarding self medication. Perhaps because I was never as eloquent on the subject as I wanted to be. But in this post I hoped I had finally expressed my feelings on it reasonably and with sensitivity. So it was very nice to read your comment.

    I am hopeful that the efforts of Clusterbusters will soon lead to a better understanding of CH and relief for all sufferers.

    By Blogger Murdock Scott, at 2/29/2012 3:47 PM  

  • Keep blogging ... Please. The ignorance of the medical community and the incredulity of family and friends (don't be daft it can't be THAT bad!) is enough to bring me to despair. A self analytical approach to ch is surely needed. If we don't work it out, it seems few others can be bothered to.

    By Anonymous TC, at 3/24/2012 3:33 AM  

  • I wish that I didn't have to do it, but I absolutely assure you that it works. Nothing else in 14 years of suffering has come close to the magic of this treatment. I hate taking the dose with an absolute passion but there is nothing on earth worse than a bout of 2-3 attacks a day for 5 months twice a year.

    If people were self medicating with lithium or gabapentin i might understand, but you are talking about a highly tested drug that millions have taken. The pay-off has to be worth it. Of course if it can be medically legitimised then all the better.

    By Anonymous Anonymous, at 12/05/2012 6:38 AM  

  • This comment has been removed by a blog administrator.

    By Anonymous jyothi, at 1/02/2013 11:41 AM  

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