Jump to content
ClusterBusters

cathb357

Advanced Members
  • Content count

    38
  • Joined

  • Last visited

  • Days Won

    2

Reputation Activity

  1. Like
    cathb357 got a reaction from FunTimes in Newb here   
    Trucker, This is a good place to get some excellent information and learn you are not on your own. This community gives value by sharing their experiences, The good, bad, ugly. do's and dont's very valuable when negotiating CH. Read the "New Users-Read Here First" the link is at the top of the page (blue bar). There are good and caring people here with a common goal. PF or Pain Free. I am currently busting a cluster cycle, I am episodic and am getting better at being ready to push the beast back into the hole it crawled out of. Take your time here the wealth of information will change your life for the better! Look forward to Pain Free days ahead. Cath
     
  2. Like
    cathb357 reacted to Batch in Does using O2 tend to make your cycles longer? And what about rebounds?   
    Hey Freud,
    Fair comments about my post to JH.  Too much bravado and not enough factual data...  I've fixed that with an edit.  Take a look and let me know if it passes muster.
    Regarding the online survey data, I've kept my reporting of that efficacy data as objective as humanly possible.  I'll be happy to show you the survey database this coming September at the Clusterbuster Conference in Dallas, TX.  Credibility is everything when talking about efficacy of a CH intervention like Vitamin D3, so I'm not about to risk that credibility by making false, misleading or exaggerated claims.  I've too many neurologists, headache pain specialists, vitamin D3 experts, CHers and a growing number of migraineurs following my work.  A few neurologists have even been kind enough to provide peer reviews and feedback...  Two of these neurologists are CHers so are taking this vitamin D3 treatment protocol to prevent their CH.
    For reference and for those who don't know me, I'm a 74 year old retired Navy fighter pilot with over 3000 hours flying Navy fighters.  I have a dated degree in Chemistry circa '67 from the University of Washington, I've been a CHer since 1994 and diagnosed as chronic by neurologists at NIH in 2005.
    I'm not a doctor so I don't diagnose, prescribe or treat CHers or migraineurs.  What I do is provide information outreach on safe and effective non-pharmaceutical CH and MH interventions (O2 and Vitamin D3).  That information is based on feedback data from thousands of CHers I've been collecting since September of 2006 on CH.com with my first posts on the benefits of oxygen therapy with hyperventilation as a CH abortive, on 10 December 2010 when I began posting about my experiences preventing CH with vitamin D3 and the cofactors as well as detailed data from the online survey of 293 CHers following the anti-inflammatory regimen CH preventative treatment protocol to prevent their CH.  This survey  went online over the Internet in January of 2012. 
    When asked for suggestions or answers to CH related questions about this treatment protocol, I generally provide answers based on what many other CHers or I have found. I also suggest CHers and migraineurs see their PCP/GP or neurologist to discuss the anti-inflammatory regimen and to obtain the essential lab tests for serum 25(OH)D, calcium and PTH.
    I don't sell anything, nor have I taken one cent in renumeration for any of my posts about the benefits of vitamin D3 in controlling CH and MH here at Clusterbusters, over at CH.com or on Migraine.com...  My wife will attest to that fact as she does our books.  She frequently points out that I've spent an average of $2,500 a year (out of pocket) since 2006 providing information outreach to CHers and MHers on the benefits of oxygen therapy with hyperventilation as well as the benefits of vitamin D3 and the anti-inflammatory regimen in preventing CH, MH and in promoting improved health since December of 2010.  I even spent two weeks in early 2018 posting in Facebook CHer and Migraineur groups.  I got booted off Facebook after a couple posts on the effectiveness of the anti-inflammatory regimen in preventing migraines.  It appears Facebook's Big Pharma sponsors didn't like what I posted so had me blocked.
    I've been paying $100/year to keep online survey running since 2012 and my annual dues as a member of the American Academy of Neurology (AAN) as a vitamin D3 and Cluster Headache researcher have cost me $260/year since 2013... My annual travel, lodging, meals and registration costs to attend conferences, meetings with neurologists and to make presentations on the effectiveness of oxygen therapy with hyperventilation and the anti-inflammatory regimen since 2009 have averaged $2,000/year. 
    I've made two trips to Switzerland, two trips to Norway and one trip to Germany to attend meetings with fellow CHers at CH conferences and to meet with neurologist like Prof. Dr. med Ottar Sjaastad in Haugesund Norway, Prof. Dr. med. Arne May at his headache clinic at the University of Hamburg Eppendorf (UKE) Germany and Dr. Todd Rozen, MD, FAAN at his facilities in Wilkes-Barre PA.  If you'll check the fine print in the ICHD-III beta website, you'll find Dr. May and Dr. Rozen are in the working group responsible for trigeminal autonomic cephalalgias.

    Dr. Rozen was kind enough to stop by my poster presentation on results from the online survey of CHers taking the anti-inflammatory regimen at the 2014 AAN Annual meeting in Philadelphia, PA.  The reason for the Cowboy getup is simple... I grew up on a horse and during my poster presentation, I didn't want anyone thinking I was a neurologist.
    What most people don't know is I've been quietly going down the rabbit hole in search of answers that will help me define a more detailed pathogenesis of CH and MH as well as determine how and why vitamin D3 and its conutrients/cofactors are so effective in preventing CH and MH.  I track all vitamin D3 RCTs as well as cluster headache and migraine RCTs on clinicaltrials.gov and weekly editions of the AAN journal Neurology. 
    This research has taken me into the realm of molecular biology and gene mapping.  There are quite a few neurologists doing this kind of research using anti-CGRP monoclonal antibodies as CH and MH prophylaxis, but none using vitamin D3 as a CH or MH prophylaxis.  I'm a member of PLOS - a nonprofit publisher innovator and advocacy organization, the Cureous journal of medical research, and Researchgate where leading edge studies and scientific papers like this are published.  That said, there are a growing number of physicians now trained in the Coimbra vitamin D3 protocol for preventing multiple sclerosis.  Dr. Coimbra has treated over 2000 of his multiple sclerosis patients with his vitamin D3 protocol and his patients have a 95% complete remission rate.
    So why am I doing all this?  It's clearly not for the money...  It's also not an ego trip seeking credit for the many findings made public about the safety and efficacy of oxygen therapy with hyperventilation as a CH abortive or the anti-inflammatory regimen as a safe and effective CH prophylaxis...  That credit goes to the thousands of CHers who took the leap of faith to try these two CH interventions then took the time to provide their feedback. That feedback is what motivates me to keep doing this as I know the terrible disabling pain of our disorder and that the good news is it doesn't need to be that way.
    By the way, I'm a strong supporter of CHers using psilocybin or seeds as a safe and effective CH prophylaxis.  The data I've collected to date from CHers here at Clusterbusters indicate the vitamin D3 protocol and psilocybin treatments are not mutually exclusive.  Although the data is largely anecdotal due to small numbers, It appears these two CH prophylactic treatments have a synergistic effect when taken together.
    Take care,
    V/R, Batch
     
  3. Like
    cathb357 reacted to Freud in Does using O2 tend to make your cycles longer? And what about rebounds?   
    Hey batch, I meant what I said you do a great service to the community. I have directed many people to D3 and your work. It was just the opening statement that got me. Keep up the good fight. 
     
    Brian
  4. Like
    cathb357 got a reaction from FunTimes in Newb here   
    Trucker, This is a good place to get some excellent information and learn you are not on your own. This community gives value by sharing their experiences, The good, bad, ugly. do's and dont's very valuable when negotiating CH. Read the "New Users-Read Here First" the link is at the top of the page (blue bar). There are good and caring people here with a common goal. PF or Pain Free. I am currently busting a cluster cycle, I am episodic and am getting better at being ready to push the beast back into the hole it crawled out of. Take your time here the wealth of information will change your life for the better! Look forward to Pain Free days ahead. Cath
     
  5. Like
    cathb357 got a reaction from FunTimes in Newb here   
    Trucker, This is a good place to get some excellent information and learn you are not on your own. This community gives value by sharing their experiences, The good, bad, ugly. do's and dont's very valuable when negotiating CH. Read the "New Users-Read Here First" the link is at the top of the page (blue bar). There are good and caring people here with a common goal. PF or Pain Free. I am currently busting a cluster cycle, I am episodic and am getting better at being ready to push the beast back into the hole it crawled out of. Take your time here the wealth of information will change your life for the better! Look forward to Pain Free days ahead. Cath
     
  6. Like
    cathb357 got a reaction from FunTimes in Newb here   
    Trucker, This is a good place to get some excellent information and learn you are not on your own. This community gives value by sharing their experiences, The good, bad, ugly. do's and dont's very valuable when negotiating CH. Read the "New Users-Read Here First" the link is at the top of the page (blue bar). There are good and caring people here with a common goal. PF or Pain Free. I am currently busting a cluster cycle, I am episodic and am getting better at being ready to push the beast back into the hole it crawled out of. Take your time here the wealth of information will change your life for the better! Look forward to Pain Free days ahead. Cath
     
  7. Like
    cathb357 reacted to FunTimes in Newb here   
    Here is a link for the D3 a member on here named Batch came up with
    https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people
    You will want to go get your blood test to see what your vitamin D levels are now and then again about 3 months after you start taking all the vitamins to see what changes have occurred. After that you can tweak things as needed to help better.  A lot of people on this site have gotten relief and poster results and different things they may have added, search D3 on the upper part of the page under your user name and you will find a tun of information. You can click on the envelope on the top of this page next to your user name and send Batch a message with any question you may have after reading up on this and I am sure he will get back to you
    Are you using anything else to abort your attacks? You can do it without insurance, plenty do, by setting up a welding oxygen setup. You will want to get oxygen as soon as you can it will change your life for sure. 
  8. Like
    cathb357 reacted to Psiloscribe in Update   
    Thanks everyone.
    Lab reports came back with good news and no more surgery and no chemo needed. She'll be starting a course of radiation in a few weeks and then we'll both be seeing everyone at the conference.
    Thanks again for the thoughts and prayers and well wishes. The cluster family means a lot to both of us. its been almost 20 years on the different generations of this board.
    Best,

    Bob

     
  9. Like
    cathb357 reacted to mit12 in Welding Oxygen   
    Just an FYI. At Airgas you can rent an 60 cubic foot Oxygen bottle for $18 per month. I filled out the credit application today. It will cost $20 dollars to fill it each time.
  10. Like
    cathb357 reacted to CHfather in van Gemert method   
    ron, i'd suggest that a quick google search would enlighten you and save mystina some potential discomfort.   
  11. Like
    cathb357 reacted to Pixie-elf in van Gemert method   
    I'd get some glasses for the reading, but screw that method, unless they're willing to let you try it for free and pay them once it works. 
    Keeping my glasses on keeps me from getting some screwed up headaches, but doesn't help my CH one bit.

    For some reason, when I heard "the cupping guy" my mind got completely the wrong picture. I was thinking "Why would a reach around help CH?"
    Then I remembered what cupping was.
    Oops.  ;D
    Mystina
  12. Like
    cathb357 reacted to swiftlaw in van Gemert method   
    What about the licorice ? The Portugese wizard and the overweight Shaman (who owned a laundry mat) the meditation and yoga - the chinese herbalist -the iodine lady - the pierced gum theory - tooth extraction and mercury filling replacement - all these things I have done. Why not a pair of Dutch X-Ray specs ! I'm game.
  13. Like
    cathb357 reacted to mit12 in Welding Oxygen   
    I woke up at 2:00 this morning with an CH attack, I used my oxygen setup and a aborted the headache! started at 25lpm and reduced it to 8lpm after the headache went away for the post headache time. When my doctor tried oxygen on my headache it did not work, high flow did the trick. Thanks CHfather for pushing me into trying oxygen again with the proper setup.
×