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  1. Like
    jms reacted to jon019 in Pounding Head, Broken Heart   
    Moxie...so sorry for your loss. Whether you celebrate the season or not.... just know you got family out here who care and are thinking of you!
  2. Like
    jms reacted to Matakarap in What would you do   
    Thanks Siegfried for your message, i'll try milk+curcuma+black pepper. It's good not to feel alone with the same problems.
    As it was impossible to find medical O2 at an efficient flow in Japan, i felt i was becoming crazy so i've just cancelled my tour and have taken the first plane back home (France). Kind of professional suicide, but i felt i was in real danger and mental health is the most important thing...
    So i will see my doctor this monday, and will restart the D3 regimen with everything needed. 
    Thanks BostonDoc, i'll try to find Zolmitriptan as you said it's better than sumatriptans, but don't forget that all countries are not USA... In Japan even vitamin D3 is almost impossible to find or to ship from abroad.
    I'll need to go there again soon, so my only hope is to find welding O2, plus a kind of MM called "Hikageshibiretake". Japan is really late about treatment of CH. Hope the fact to cancel some important shows will make things move a little bit, thinking about all japanese Clusterheads... 
  3. Like
    jms reacted to Steve Pray in Just Putting This Out There...   
    Well I didn't have any shadows yesterday at all so i was hopeful went I went to bed last night. I was actually looking forward to going to sleep instead of being terrified of it. Went to bed at 2am (I'm a late nighter) and wouldn't you know it at 5am I had to jump out of bed. The difference was this time it was because of my 61 year old bladder. Did my business and back to sleep. Woke back up at 10am this morning after another restful night other than the bladder call.

    I gotta tell you I am almost in tears right now. After 15 years of fighting the beast I've never had a break like this during a cycle. Hoping it continues. I did download the new D3 info and will look through it today. 

    I also want to state for anyone reading this that I have been on this site for quite some time but never really post. However if it wasn't for this site and the information I've gained from it I may well be another reason they call CH suicide headaches. I've had cycles so bad that I've literally banged my head against the door jam to the point of bleeding just to try and focus the pain elsewhere. I thank God for this site and the people who work so hard for all of us who battle this beast and I thank God for the woman who has stood by me through all of the terrifying nights we've been through. So thank you to all of you from the bottom of my heart.
  4. Like
    jms reacted to Bejeeber in My story, from headaches to heroin. Help Me!   
    Hi Junco,
    I imagine it wouldn't be a bad idea to research a bit on the topic of schizo-affective and psychedelics, as last I checked (which was years back), even those who recognize the potentially therapeutic properties of psychedelics, recommend against them for anyone with a family history of schizophrenia (if that is related to schizo-affective..?).
    Also, CHfather isn't known for giving people a hard time, just the opposite in fact. He's well known for being non-judgmental, and for volunteering his time to help countless headbangers find their way to some relief, so when interpreting his words, I think that can be a good angle to come at them from. 
  5. Like
    jms reacted to Pebblesthecorgi in Thanks, Pebbles!   
    Its a very interesting process.  Not for those who enjoy instant gratification.  Those who have hung in there for many years deserve oodles of respect and credit.  Definitely have to play the long game.  There is some optimism some traction on O2 with CMS.  Time will tell but with Washington in tail chasing dysfunction the cluster world may score a win.
  6. Like
    jms reacted to amon10 in Thanks, Pebbles!   
    Yes thank you very much for your advocacy! Also anyone else here that went! Don't know you all personally but very thankful to have dedicated folks speaking on our behalf. 
  7. Like
    jms reacted to Psiloscribe in 14 years in the making, psilocybin & clusters enter the lab   
    In 2002, Clusterbusters was formed to take a pro-active role in researching for a cure for cluster headaches and find new and improved treatments.
    Eventually, 6 advocates traveled to Boston and met with the administration of Harvard Medical School and convinced them of the importance of this research and they agreed to undertake the first psychedelic research project at their institution in 40 years.
    On Feb 9th, 2004, an agreement was signed to begin research at Harvard University, looking at using psilocybin as a viable treatment option providing results far better than anything currently available.

    The first published results from this groundbreaking clinical study of this treatment appeared in the prestigious medical journal Neurology in June of 2006.

    This has been an incredibly long and often frustrating process that included the discovery of BOL-148, starts and stops of every fashion, thousands of people finding relief with various new options and an unending determination to push forward past every obstacle. The growth of Clusterbusters into an active and successful advocacy group for the entire community, built with contributions from hundreds of people that refused to let the words “can’t”, or “no” stop them from helping others.

    Along the way we have added some incredibly dedicated advocates, we have lost one of our original research team members, Dr. Andrew Sewell, added extraordinary researchers and headache specialists to our team, overcome those that have tried to stop us and will continue to push forward.
    Yes, it has taken 14 years but I am both proud and pleased to announce the following:
    Adults with chronic cluster headache, age 21 - 65, needed for a research study investigating Psilocybin in the treatment of cluster headache.
    ClusterBusters, a non-profit advocacy and education group, is participating in the recruitment of subjects for a pilot study investigating the safety and efficacy of psilocybin in cluster headache. This study is taking place at the Veterans Affairs Hospital in West Haven, Connecticut, an affiliate of Yale University School of Medicine.
    Earn $100 per test day. Three test days total.
    Call (203) 932-5711, ext. 4335
    All calls are confidential
    HIC # 1607018057, HSS # DD0063
    Biological Studies Unit, VA Connecticut Healthcare System, West Haven Campus
    A few details of explanation:
    1.      This study will require at least 4 visits to the study site, with time between visits which will require needing to be in the area for a while.

    2.      Please call during regular business hours (9:00am-4:00pm EST) if possible.

    3.      Participants will need to be physician-verified chronic cluster headache sufferers.

    Congratulations and thank you to everyone that has worked so hard for all these years to make this happen.

    Bob Wold
  8. Like
    jms reacted to CHfather in Pre-planned Legal fight ?   
    Some will remember a guy who showed up here a few years ago asking for $ for legal fees after his arrest, claiming to be a buster. Turned out he was a serious dealer.
    The thing about a lawsuit (which is very unlikely for someone who's not dealing, but of course not impossible) is that while it might bring publicity, it couldn't set a legal precedent making it okay to grow and/or use banned substances to treat CH.  The jury could "nullify" the law and find the defendant not guilty, but the law would still be the law, and if there was a next person, s/he would have to again to hope to win over the jury.  There were lots of jury nullification cases for medical marijuana, for example (with people freely admitting that they grew and smoked mj to treat medical conditions and the jury returning not guilty verdicts), but each one was a crapshoot for the defendant until the laws were changed.I woul
    I would hope, as Denny says, that the busting community would come to the aid of anyone who was arrested and wanted to fight it.  That's a lot of $, though.
  9. Like
    jms reacted to ThatHurtsMyHead in Pre-planned Legal fight ?   
    Only speaking for myself.  So far as I know no one using 'our' medicine exclusively for treating our CH has been prosecuted.  IMHO, bringing unnecessary attention to ourselves would likely bring more negative attention than positive.  There are many more naysayers that don't have the first clue about how bad CH is, would say we need to take an aspirin instead.  Most of the world is too close minded, and narcissistic in my opinion.
  10. Like
    jms got a reaction from Nicolas in "The Doctors" segment on CH   
    The TV show "The Doctors" did a segment today on CH. One of their staff members suffers from CH. I didn't catch the show but saw a clip on their website. I'm glad to see CH getting the coverage. Maybe more people will begin to understand what it is all about.
  11. Like
    jms got a reaction from harry65 in new from south london   
    Thanks for the good news. Hopefully you will continue to have good results with the mm.