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Showing content with the highest reputation since 08/08/2019 in Posts

  1. 8 points
    Well guys, I’d like to start with my weight loss, as some of you may have read in my earlier posts, perhaps about 2 months ago now I believe, I had a significant weight gain from 75 kilos to 88 in the space of 4 months from January, where my cycle started, the cycle was only small, but I had dealt with heavy post cycle shadows for a several months. As a result, I stopped going to th gym and began eating very unhealthy, before I knew it I went from being quite fit and athletic to overweight, I am please to say that I am at the half way point, i now weight 81.3 kilos, only 6 more kilos to go before I reach my original weight, I attribute my motivation to lose the weight to living pain free for the last 2 or so months, the d3 regimen has pretty much made me feel as normal as I was before my first ever cycle, It’s the best thing I could’ve ever asked for, also, was going to save shrooms for desperate times, but I figured I may as well add another layer of protection for my brain and have some fun as well, I’ve been hitting the books hard, and my social life is back to normal as...even met a lovely lady on tinder ( ͡° ͜ʖ ͡°). Pretty much, I haven’t been this happy since before my first cycle, and I would say that this forum is the best thing to ever happen to me...I don’t think I’d be where I am right now if it wasn’t for this place, so thank you, now the only painful thing I have to worry about now is having my foreskin cut off PS I’m going to the burning man this year, SUPER EXCITED
  2. 6 points
    FYI I know many have been concerned about Freud. He is currently in the hospital making a swift recovery. He will be back on line soon. Thank you for all the prayers and good wishes. Best regards to a pain free future for all, Freuds mom
  3. 6 points
    Kat, Gender has little to do with the efficacy of oxygen therapy in aborting CH. If used properly with hyperventilation at forced vital capacity tidle volumes either with 100% oxygen at 30 to 40 liters/minute with a non-rebreathing oxygen mask, hyperventilating with an oxygen demand valve, or by hyperventilating with room air for 30 seconds at forced vital capacity tidle volumes then inhale a lungful of 100% oxygen and hold it for 30 seconds then repeat this sequence until the pain is gone. In all three methods, the average abort time should be around 7 minutes with > 95% efficacy and it has nothing to do with gender. What most doctors and neurologists don't understand about effective oxygen therapy as a CH abortive, is oxygen is only half of the abortive. The other half involves blowing off CO2 faster than the body generates it through normal metabolism by intentionally hyperventilating for 6 to 7 minutes pushes the body into respiratory alkalosis. In simple terms blowing off CO2 by hyperventilating shifts blood pH to the alkaline side of neutral making it more alkaline, hence the term respiratory alkalosis. I need to point out that respiratory alkalosis from intentionally hyperventilating is temporary and harmless. It clears normally within a few minutes once returning to normal breathing rates. Respiratory alkalosis does several things that help abort CH. The first effect of respiratory alkalosis with an elevated arterial pH, is to slow the expression of Calcitonin Gene-Related Peptide (CGRP) and Substance (SP) by neurons in the trigeminal ganglia. CGRP and SP are responsible or the neurogenic inflammation and pain we know as CH. What also happens during respiratory alkalosis is elevating arterial blood pH in the lungs to the alkaline side of neutral, increases blood hemoglobin's affinity for oxygen. This enables blood hemoglobin to carry up to 117% of oxygen where breathing a little faster than normal elevates blood oxygen to only 99%. This super-oxygenated blood flow and low arterial pH does two things. It speeds up the breakdown of CGRP and SP and It also triggers triggers pH homeostasis when chemo receptors in the brain stem and aortic arch sense the low arterial CO2 concentration. These chemoreceptors signal the breathing control neurons in the brain stem to slow the respiratory rate. They also signal the heart to beat more slowly and arteries and capillaries throughout the body including the brain and trigeminovascular complex to constrict. All this happens to slow the flow of blood to the lungs to prevent the loss of CO2 and allow its arterial concentration to rise back to normal levels. While we're intentionally hyperventilating, this triggers the vasoconstriction throughout the trigeminovascular complex and this serves as a significant CH abortive effect. I can hear the wheels turning... WTF are Forced Vital Capacity Tidal Volumes? The answer is simple once you understand the terms. Tidal Volume = The volume of air (or oxygen) inhaled and exhaled. The air comes into the lungs during inhalation and goes out when exhaling, just like the tide comes in and goes out. Vital Capacity = The maximum amount of air a person can expel from the lungs after a maximum inhalation without thinking about it. Forced Vital Capacity = By doing an abdominal crunch, tightening the abdominal and chest muscles as in doing sit-ups at the end of a forceful exhalation, squeezes out an additional half to full liter of exhaled breath highest in CO2 content. If you hold the abdominal crunch and chest squeeze for at least a second, your exhaled breath will make a wheezing sound. Try it now and hold the squeeze until your breath makes a wheezing sound. Accordingly, hyperventilating at forced vital capacity tidal volumes pumps CO2 from the blood stream much faster than "normal respiration." Now for the proof this method of oxygen therapy and breathing techniques makes oxygen therapy very effective with an average abort time of 7 minutes. We conducted a pilot study of this method of oxygen therapy (hyperventilating with 100% oxygen) with seven CHers (6 CCHers and 1 ECHer, six men and one woman) in 2008. Four of the CHers used an oxygen demand valve and the other three used a Flotec 0-60 liter/minute oxygen regulator set a a flow rate of 40 liters/minute with a Cluster O2 Kit mask from CH.com equipped with a 3-liter reservoir bag. Abort times with either method were the same. Each of the seven CHers collected abort time and CH pain level at start of therapy for every CH aborted for a period of 8 weeks. This came to a total of 366 aborts with this method of oxygen therapy. 364 of these aborts were rated as successful with a complete CH abort in 20 minutes or less for a success rate of 99.4%. The results are plotted out in the following graphic. The average abort time for these 364 aborts was 7 minutes. One of the pilot study participants collected abort time and pain level data for a week while waiting for his oxygen demand valve, using a disposable non-rebreathing (NRB) oxygen mask at an oxygen flow rate of 15 liters/minute. As you can see, the demand valve method (hyperventilating with 100% oxygen) results in CH aborts 3 to 4 times faster than using a disposable NRB oxygen mask at a flow rate of 15 liters/minute. We also discovered an interesting phenomenon that the higher the CH pain level, the longer it took to abort to abort the CH. This has never been reported in any of the previous RCTs or studies of oxygen therapy as an abortive for CH or Migraine. For reference, I hold a patent on the oxygen demand valve method of aborting CH. I've also over 15 years training in Aviation Physiology primarily involving oxygen breathing systems and their use in flight. Bottom line, hyperventilating at forced vital capacity tidal volumes with 100% oxygen or hyperventilating with room air at forced vital capacity tidal volumes then inhaling a lungful of 100% oxygen and holding it for 30 second then repeating this sequence 6 more times for an average total of 7 minutes are equally effective in aborting CH. Hope this helps. Take care, V/R, Batch
  4. 6 points
    I'm honored to have the opportunity to share my knowledge and experience during 2 "grow demos" as part of this years conference agenda! I've been working on a PDF file documenting all of the Teks and processes that I'll be presenting for several months now and will be putting the finishing touches on it this next week! I've done it all on my Samsung Note and am too technically challenged to figure out how to transfer it to my laptop in PDF format....but our conference chairwoman has assured me that she'll "git r done" for me when I get to Dallas the day before the conference begins. All that to say this.....if you're planning to attend the conference and want to get the PDF, be sure to bring a thumb drive with you......the doc contains a lot of pics and is extremely large so I feel like that will be the easiest, fastest way to distribute it! See ya'll soon!! Dallas Denny
  5. 5 points
    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.
  6. 5 points
    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.
  7. 5 points
    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.
  8. 5 points
    Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications). You can also concentrate your self education efforts with a laser focus. Do not expect the medical establishment to take charge and treat you. You must direct your own treatment within boundaries you set. Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster headaches. The criteria are pretty straight forward but overlap some other conditions. Many headache conditions respond to imitrex, very few respond to O2 therapy used properly. i am going to try and attach an article from "Up to Date" which is an online "go to" reference for many physicians and mid level providers. It is a peer reviewed, frequently updated, referenced resource designed to help experts and non experts stay abreast of treatment guidelines for many conditions. The attachment are treatment guidelines for cluster headaches and you might consider printing it off and bringing it to a provider or ER visit as you seek a partner to manage cluster headaches. The attachment is a bit large and may not be allowed to be updated. Maybe an administrator can help if it doesn't upload. You can PM me if you want and I'll email it if you wish. @CSA get a diagnosis. uptodateguidlines.pdf
  9. 5 points
    Hi all I am alive and well. My PTSD ended up getting triggered in Dallas as I thought it might. Sorry for my long absence. Thanks to all that sent their love. I will be back on the boards and this thread w an update. Short version is I am now having 4-6 kip 7-9CH a day. My D peaked at 277 w no bump in Ca or PTH. (I was about 150ish before I was admitted unfairly by my psych thinking I was manic and not triggered and I knew it was going to happen so I loaded w 1.5 mil units before my admission. My D spiked to 277 w that and my CH were gone for a bit. But as it burned off they came back as expected. ). I’m going to get w @Batchtoday and go over numbers to figure out a more aggressive load and burn schedule. I am also dosing w vitamin L... happy trails folks love me
  10. 5 points
    I'm going to go ahead and post this a few days early as I may not have the time this weekend! This board went live on October 27th in 2009! I joined that day so it will also mark 10 years of active membership here for me as well!! We all owe a deep debt of gratitude to DJ for helping with getting the original yabb powered board up and running!! I can honestly say that being a part of clusterbusters this past 10 years has been by far the most rewarding experience of my life!! DD
  11. 5 points
    Hi all, I have some great news to report! I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment... I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays... 10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone! If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). BBL with more info. looking forward to seeing y’all in Dallas.
  12. 5 points
    I want to send a Thank you to all That helped me get through 8 months of what was thought to be Cluster cycle, after my neck surgery I have been headache free, its crazy that I couldn't tell the difference from a cervical and a Cluster being I have suffered clusters for a few years Again Thanks to everyone I will be checking in and hope all I have learned will someday let me help with solid advice for somebody, Peace and God Bless
  13. 5 points
    Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
  14. 5 points
    Damn it Denny....you mean I have to lug a thumb drive all the way to Dallas??!??! What kinda rookie operation is this?
  15. 4 points
    Second Update from the OP Well Hallelujah and pass the ammunition. Last week I got a call back from my Doc's office, they needed help filling out a form from Aprila Healthcare for the O2 setup. They asked me all the medical questions again about our condition, stuff I know is in my record, but I'm in no mood to complain since it looks like we're making progress. Stuff like eye swelling, nasal congestion, consistent pain location etc (you know all the symptoms). She says she's sending the form over to Aprila and they should contact me. Sure enough Aprila calls me Friday to set up an appointment. I have to come in to be trained how to use the equipment. I went in for my appointment today, got the rudimentary explanation how to use everything, They gave me 3 small tanks to take away with me, mask, hose, regulator and carrying rig. They set me up for delivery of their largest tank, which is supposed to come this afternoon. They'll deliver tanks whenever I need them from this point forward. Here's the kicker - Its all covered by insurance! I was presented a zero dollar invoice when I left. After all the hassle, I felt like I hit the lottery. I guess calling my CEO and complaining to him about our health insurance may have helped. Apparently threatening to pull the account of 600+ people has a way of getting an insurance company's attention.
  16. 4 points
    I am a long time episodic sufferer and normally had the two cycles spring and fall. In the last couple of years I had been using prednisone taper and sumatriptan as needed. In the beginning the prednisone worked quickly stopping the headaches within 48 hrs but now it seems like it takes a week or more for it to stop them . This in turn has increased the amount of Triptans I have been using. I noticed a big change this year as I am now in my 4th cycle and it seems like I only get a month break between cycles. I had a discussion with the researchers at Yale and they said that the prednisone and triptan use could be increasing the amount of cycles that I am experiencing. I had heard of Emgality and got a prescription from my neurologist. I got two injectors and stored them in the fridge and will receive one injector every month after that. Maybe two weeks after receiving emgality I felt the shadow signs of another cycle so I decided to try it. I did the two injections and the next day felt very tired. But for nearly two weeks I didn’t have any shadows. One or two days before I had to refill the prescription I had a mild attack lasting 5 or 10 min, very bearable. I refilled the prescription and took another injection and now for a week or so the mild attacks come in the morning and after I go to bed. I am hoping to ride this one out without steroids or triptans and keep taking the Emgality every month as a preventative. I will update here as this cycle continues on Emgality.
  17. 4 points
    Why do I feel like I do after a Jehovah's Witness or Hari Krishna just knocked?
  18. 4 points
    DK, I've been keeping up with the thread, wondering if it was going anywhere. As others have pointed out. Someone comes to the board every few weeks announcing a cure. There is no cure. Only remission. I myself have gone 2 years without an attack, then back to episodic then to chronic. Others 10 years or more and it comes back. I manage my beast with the natural medicines primarily discussed on this board. That said. I like to follow Bob's lead and let people speak freely without fear of repercussions. MM was once thought of as being a quack management technique. It is now, thanks to Bob and others like him, in my opinion one of the best treatments out there along with Oxygen. If you feel cured, then I'm happy for you. I'd recommend not claiming a cure though. Those of us that have been around are sorta tired of people claiming a cure, yet they're clearly simply in remission. I thought verapamil was a cure many years ago. The first time my doctor prescribed it for me, my CH disappeared a few weeks later. I was over the top happy that I finally found something that worked. The next year my CH came back and I went to the doc for another script of verapamil. It didn't do anything. Absolutely nothing accept give me tachycardia. (A dangerously slow heart beat). I realized thinking back. The first year was about 2 months into my cycle. At the time my cycles ran 2 to 3 months. I realized then, that my cycle had simply stopped on it's on, and had absolutely nothing to do with the verapamil other than coincidence. I've read about others having similar experiences with Kudsu, chriopractic care, hot baths, hotsauce up the nose, having the facial nerves cut, Adkins diet, vegetarian diet, etc etc. and the list goes on. They were not cures, just chance coincidence, or at best something that provided a small bit of help (which we all need at one point or another). What works for one person, may or may not provide help for another. It's great you're in remission, but people will not take you seriously by claiming a cure. You're in remission, that's great and happy for you. Cheers, J
  19. 4 points
    Forward this post to 10 of your friends or the "cure" will disappear forever.
  20. 4 points
    hi csa...welcome, ...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro).... ...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapacitated by a hit... ....my idea of beauty is an O2 tank with layers of dust...the peace of mind of availability is priceless (what would you pay to stop something a million times worse than child birth?).... and you already know it works... ....somewhat typical to get worse over time from initial onset...but that is NOT a given... .....CH is only going to increase your anxiety/depression...but also could be unrelated...get that treated regardless of headache diagnosis.. best jonathan
  21. 4 points
    Hi. Name's pronounced 'Rori'. I battled unremittant chronic CH with upwards of a dozen distinct hits per day from mid 2011 through fall of 2017, and can happily say that I have had nothing but light shadows since my old hippy mother found the Busting method here and my somewhat sketchy connection came through for me. At the time of the attacks I had worked to convince myself that what I was experiencing was a mild form of the disease -- only after they faded from my life did I understand what I had simply grown accustomed to. No, wanting to trepan ones self to stop the pain is not a mild symptom. Loss of motor control and blackouts due to pain are not mild. The title says it all. For six years I was functionally disabled (though the medical establishment says otherwise), socially isolated, and completely controlled by the raft of CH triggers I experienced, which seemed to range everywhere from sleep to caffeine to spicy foods and dust and... just... I think that the whole world would be best described as one big trigger. I wasn't able to drive a vehicle or operate power tools safely, couldn't ride a bike or walk quickly, couldn't get around florescent lights or anything that produced a frequency, and my doctors... Propranolol gave me the blood pressure of a corpse. Amitriptyline made me forget my name and address. Imitrex and Topomax made it worse, if at all possible. After I refused to take the Topomax my Neurologist refused to see me. MRIs and CAT scans came back 'perfectly normal'. Then finally the stars aligned . . . I went to a liberal arts college (the CH started right after graduation) and friends had given me magic mushrooms in the past. I had been hoarding my single remaining baggy trying to make microdosing work. Nope. Not effective. And then I met a girl who drank too much, and needed a miracle of her own. Where my personal thoughts to myself were to Gut Up and Deal (see above re: mild case? I'm from a Navy Family...), I found that where I lacked the audacity to reach out to friends for my own sake, when I fell in love with a girl who drowned herself in minimum half a liter of vodka daily and knew she wanted out, I found that strength, at the moment when my network had a solid connection. Its amazing what you can do for others when your own strength is failing (again: Navy family). Several ounces of psychedelic and two years later, I am still cluster free, able to see, drive, hold down a job, and THINK, while the girl who is now my wife hasn't touched liquor in two years. Yeah. Y'all saved my life. Thank you. Keep fighting.
  22. 4 points
    ....no mirrors in yur house bro?
  23. 4 points
    Another update: still pain free, attended a birthday party and got absolutely shit faced with no sign of a shadow, life is great
  24. 4 points
    I think Florida (Tampa st pete) would be awesome.. :). Afternoon sail for the first 20 or so. cheers, j
  25. 4 points
    In the recent past I successfully trained for an Ironman. Understand completely the post training hit, it robs you of the joy of completing an event. I am strongest in bike and running isnt my thing but the outcomes are likely similar. I found taking salt and magnesium at intervals helped prevent post training hits. Generally most of my hits came at night so sleep disturbances had the greatest impact on training. Busting helped too ( I think). I firmly believe it is best to pursue everything you can and fuck the beast. If you alter your life for the beast the beast wins. Never let a bully win.
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