Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation since 12/06/2019 in all areas

  1. 5 points
    CHfather

    What if there WAS a CURE?

    D'K, What you are saying is not sensible. There is no one person here who has some kind of huge following that could produce the results you say you want. You post what you have learned, one person at a time tries it (or doesn't), they report on the results, and that either inspires others or doesn't. Why would you not want to help just one person, if that's all you reached? And very few people here have the clout with a doctor to get an off-brand prescription. This site was created because one person tried an alternative treatment that probably 95% of people with CH ridiculed and/or attacked. He put it out there, and some other people tried it, and it worked for them as it had for him. They really did have to "BELIEVE," to use your word, because it involved obtaining and consuming illegal, hallucinogenic substances. Whatever you have to offer has much better odds of being tried and adopted than that did, if it works. So, I say with no real disrespect, you either have to put up or shut up. That's how it works here. I doubt that anyone is going to beg you.
  2. 4 points
    Pebblesthecorgi

    What if there WAS a CURE?

    Four hours of typing to say nothing. The parasite theory has been floated before and not well received for obvious reasoms not the least of which it is provable by “modern science”. Being withholding and secretive is the stuff of attention seeking and manipulators. Folks with quality information are generous and forethcoming. Batch set the standard for this and many others have done so to a lesser degree . I am happy you have resolved you CH issue but it seems you have other things to work on.
  3. 4 points
    Racer1_NC

    What if there WAS a CURE?

    Sounds like one of those "I'll only tell ya if you beg, plead and recognize me." type posts. I've seen many through the years. I know that if one of the many people I know with CH were to somehow stumble on to a real cure for this crap we have, they would be shouting it from the treetops. No one that lives with this shit would withhold information that could bring relief to others that suffer. The desire for personal gain causing a closed mind??? Here???? Seriously????? The fact the you even suggest such a thing shows how off target your sales pitch is. This place is a direct result of Bob's quest to help others. Because of that, many others here have spent far more than they'd care to admit trying to educate people on options, advocate for our collective and lending a helping hand when needed. To suggest a profit motive here of all places is beyond asinine....at best. I'd better stop here before I earn a posting vacation for my non-PC, obscenity laced tirade kicks in to high gear.
  4. 3 points
    CJW

    What if there WAS a CURE?

    so we need a 100 people to blow there noses? ugh. I was hoping the cure was chicken pot pie. my three favorite things.
  5. 3 points
    dmlonghorn

    What if there WAS a CURE?

    Forward this post to 10 of your friends or the "cure" will disappear forever.
  6. 3 points
    Dana129

    What if there WAS a CURE?

    What a cluster fuck of a comment ;D
  7. 2 points
  8. 2 points
    Luis

    Cycle finally over

    I wish you as many pain free days as possible!!!
  9. 2 points
    @dmlonghorn would that make it a 'pryamid cure'? Bwhaaaaa! ROFLMAO! The OP suspected knowlege of the cause for 16 years, waited... & is pain free barely over 1 year. Unimpressed by a less than 2 year remission, the OPs requirement for recognition prior to sharing the "cure" & if a book appears on Amazon for $1, I won't buy it. It won't give the name of the "cure" without purchase.
  10. 2 points
    Pebblesthecorgi

    What if there WAS a CURE?

    Hmm very logical
  11. 2 points
    jon019

    Non prescription Abortives

    ....when caught w/o O2, hyperventilation alone has helped me on occasion....definitely been helped by energy drinks, either alone or in conjunction with O2....but be careful not to overuse as caffeine can cause rebounds and, in my case, ineffective unless I restricted use to only as an abortive for hits, or timed to expected hits...
  12. 1 point
    Here's a link to the JAMA article about high-flow O2: https://jamanetwork.com/journals/jama/fullarticle/185035
  13. 1 point
    I also have very low body fat, a pinch is all you need. I've known lots of folks with Q clearences that got by just fine with what we use here.
  14. 1 point
    Yes the backside is ok but as others have suggested abdomen and thigh work. Just pinch the skin to raise it up. Even if you are 3% body fat there is no way you’ll go intramuscular. You should be able to get by with 2 mg injections if you get vials
  15. 1 point
    FunTimes

    Hello!

    Oxygen is the first thing I would get my hands on. It seems to be the hardest thing to get but works the best. You will need to call and get your neurologist to give you a prescription for it and find a vendor to deliver it to your house. you will want to order your own regulator that will allow the flow rate to be at least 25lps. You can find them on Amazon, you will also want to get the cluster mask that is designed for lucky people like us who need to get as much O2 into our system as fast as we can. If you can not get your doctor to give you a script you can get your own welding setup. you can find all kinds of information from the search box up top and we will help you out with anything you need. here are the links to the regulators. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  16. 1 point
    Bass1802

    Let me introduce myself

    I have to agree with BOF, I was just recently diagnosed CH after 9 yrs without anything that oxygen does work. I’ve been taking the Imitrex 100mg pills for last month almost 4-6 of them within 24hrs. I used the info given here above on CHfather’s post and can say after getting the rig figured out I aborted my 1st earlier today. The Redneck Reservoir was what I ended up getting best results until I can purchase a proper rig. Definitely worth it if your up to the task.
  17. 1 point
    Brain on fire

    Let me introduce myself

    35 years without oxygen, even with your 2015 to recent remission that is awful, oxygen will change your life!
  18. 1 point
    Psiloscribe

    A little help from my friends

    Group, I began advocating for cluster headache sufferers and their families in 1998. I have been trying to help others with clusters even before that online. It started when the only "message boards were known as Newsgroups in the early days of the internet. Clusterbusters officially formed in 2002 and we had a private message board on Yahoo that was invite only and the main object of our work was to work together and refine the psychedelic treatments. We did our science homework, contacted doctors and researchers and anyone with any information on how to improve the efficacy of psychedelic treatments and make sure that everyone was as safe as possible. Since that time we have made huge strides in not only the treatments but in many areas of support and advocacy work for everyone with clusters. We've been able to help thousands of people that for the most part, had exhausted all other options. My presentation called Psychedelics or Suicide was heartfelt and true. Many people have made that decision and have stepped back from the edge. We have changed legislation. We have gotten the first pharmaceutical company in history to run a phase three study on a promising new treatment. We have the top headache specialists in the world attending our conferences. We have many physicians sending their patients to Clusterbusters. We meet with congress and the FDA. We've helped train the National Suicide Hotline operators. We've completed research that showed the efficacy of LSD analogs like BOL-148 We have done research on LSA We have research going on now at one of the top Institutions in the world regarding psilocybin and clusters. We have research starting in the next month on the genetics of clusters headaches. Most of this while overcoming 50 years of neglect and the impossibilities of researching schedule one drugs. Most of which we were told could not take place. When anyone is looking into research or new areas of treatments for cluster headaches, they come to Clusterbusters first. I could go on and on but let me just say that I doubt anyone could find another support organization that has and still relies entirely upon volunteers, that has accomplished more in this amount of time, for it's members. Members that don't even pay for a membership. We've never had paid memberships which could have helped pay for some of our work, because you need to offer something extra for paid members and we have always wanted to make sure that EVERYTHING was available to EVERYONE. We are an open source organization. We do not only help people that pay for the help. I write all of this for one reason. This message board has always been the most important part of what I have tried to accomplish and where all the hard work is done. This message board is responsible for saving lives and for all the accomplishments that have come along the way. I have entrusted this board to the administrators because they are some of the people I respect the most in the world. People that I know will protect the integrity and respectability that it deserves. I have poured a large portion of my life into not only this board but what this board represents. I would not entrust that to just anyone. Administrating a message board is not easy and it is a thankless job. To make a board like this successful and for it to last more than a couple of years is not an easy task. If not run correctly it can blow up and slip away. This board is more important than any one of it's members. It's existence needs to remain a place for someone that none of us currently know, to sign on when they are making that "psychedelics or suicide" decision. I understand that feelings get hurt. People have disagreements and have different ways of offering support. People need different types of support. We NEED people with differing opinions and we need people with strong personalities. This is not an easy topic to deal with. People aren't signing on here asking how often they need to water their rose bushes. All I ask is that everyone please respect the board, respect the administrators and respect each other. You all have an important role to play here. None of us can help everyone but together we can help more people than any one individual can. Clusterbusters has not been able to achieve all it has because of any one person. There are people here that have been helping others since 2002 and before. Every person that is helped is now helped because of all the work that has gone on for all these years and all the work that it has taken to keep this board open and the lifeline that it can be for people. The administrators of this board have done more work over the years than anyone here could imagine. Please, respect the board, respect the administrators and most importantly respect each other. Bob
  19. 1 point
    Racer1_NC

    Demand Valve O2

    I attribute my PF status to D3. Took time....more than I would have thought but it appears to be working....and has been for a while now. My personal, for what it's worth, recommendation is to have O2 set up and ready all the time.....a safety net. A good mask from clusterheadaches.com and a 25 lpm reg does the trick for many.
  20. 1 point
    jon019

    What if there WAS a CURE?

    ....geeez....cut the drama and insults...put.up.or.shut.up...we will listen to anything...
  21. 1 point
    CHfather

    Let me introduce myself

    You can start by trying to get an O2 prescription from a doctor and then having it filled by an oxygen supply company, or you can set up a system using welding oxygen. If the first route is straightforward and affordable, it's probably the sensible way to go (if you have a competent doctor who will prescribe O2; and if you have insurance to pay for the doctor visit and the O2, or you can pay out of pocket for those things), but welding is simpler and ultimately no more expensive, particularly since you are probably going to pay for a higher-lpm regulator even if you get one from the medical O2 supplier. Welding O2 is discussed here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ There's a lot about O2 here, plus some things aside from O2 that might help you until you get O2: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  22. 1 point
    CHfather

    Non prescription Abortives

    There are a bunch of possibilities in here, in the section "Treatments without O2 . . . ": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  23. 1 point
    Dallas Denny

    What if there WAS a CURE?

    Congratulations on your long "REMISSION"!! But, I have to agree with Chf and BOF....there is no "CURE" for ch to date and your post is highly suspect by saying you're cured and then not elaborating.....but then again, it would be hard for you to elaborate since a "cure" doesn't exist!! DD
  24. 0 points
    DragonKiller

    Hello!

    To Louis and CHFather, who mentioned MAXALT, then discussed Rizatriptan. I assume they are one and the same. My PCP, and NOT my Neurologist prescribed it for me at my request several years ago when I was having really bad days and nights with 4 plus attacks a day, and not always able to access my O2. I showed him what I had found on Rizatriptan for Migraine, and he agreed to give it to me for that malady. CHF mentioned that it is NOT used for CH, but it certainly should be. My DR gave me RX for 7 sublingual tablets. I think they were 10 mg but they were tiny at less than 3/16 inch diameter. In the past I had used Zomig nasal sprays and though they did work, they left me with terrible "hangover" for hours, so I decided not to try a whole Rizatriptan tab at first, but to cut one into 4 tiny little pieces. I dissolved that tiny thing under my tongue, and in 5 to 10 minutes my CH was completely gone, with no hangover. I continued to use that formula (each tablet - only one at a time - cut into 4 pieces with a razor blade and kept in sealed container, pack of 7 is good for 28 headaches) with total success and NO side effects for the next several years until my headaches just magically ended a while back as I have discussed elsewhere, which by the way I posted on about an hour ago.
  25. 0 points
    GoggleEye

    oxygen supplier issues

    Just go to a welding gas supplier and purchase or rent a tank. They come in sizes from about 16 inches tall to around 4 feet. The bigger they are the more O2 they hold. I use one that is about 3 feet tall and it lasts me 2 or 3 months with DAILY us for up to about 30 minutes each time. Costs about $20 exchange the tank for a full one. You will have to purchase an oxygen regulator for welding tanks. It hooks up to a welding hose but you can get a fitting that connects to it and allows you to attach a "food grade" plastic hose to it with a small hose clamp. I then just hook up a standard "blow gun" from Harbor freight to it and set the regulator to a pressure that allows me to stick the blow gun in my mouth and feeds O2 at a pressure/volume that allows me to take a normal deep breath from it. You can then take the tank to the same "Brand" welding gas supplier pretty much anywhere in the US, any time they are open and exchange your tank for a full one. I suggest buying a regulator sized for one of the "mini" Oxy/Acetylene welding tank sets used buy Air conditioning or refrigerator service companies. The same regulator should fit ANY size of welding oxygen tank the suppliers have, and the smallest O2 regulator you can buy will put out more than enough O2 for this purpose.. It works best if you always carry your paperwork from the original place from when and where you purchased or rented your tank. I happen to be a welder, so I actually OWN my tanks and have 2 different sizes. And you don't need to tell the gas supplier that you use the O2 for cluster headaches. In some cases it might help, but in other cases they may refuse to sell you the tank or re-fill it. They will say that you MUST use only "medical" O2 and tanks for that. But the truth is that you can follow one of their delivery trucks to any hospital and watch them unload the very same large, standard, all green heavy steel tanks used for welding at the hospital, where they are then taken to their basement "tank room" where they have a whole bank of those "welding" tanks hooked up to feed the entire hospital with "MEDICAL" O2. (What a joke!) By the way, I use NEXAIR for mine. It's the same company I bought my tanks from about 40 years ago, but they have changed names several times.
×