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Everything posted by 1961mom

  1. And I've put the links into the group's "File" section (no scrolling away). Thank you so much. Your efforts are amazing!
  2. Hey guys! Loved meeting new friends and seeing old pals at the conference last week. I hope all your travels were pain free If you want to join the Facebook group (just to view) let me know your real name in a PM. I"m admin of the group and will add you without going through the "join" process. At this point in time the "Live" video feature does not allow downloads. But, it's fairly new to Facebook and Facebook is famous for changing formats and features regularly. David Nickerson (the member who shot the video) did share how he was able to 'save' them to his device. I'll check with him and ask him to update this thread too. In the mean time....for those who do want to see and are either willing to start a Facebook account or have one: Search Facebook using this exact spelling, "Cluster headaches" (no quotations) or use this link... https://www.facebook.com/groups/17789934480/ Be sure to send me a pm (here or on FB). That way we can bypass the 'join' process. We've had to begin 'vetting' every single request with a series of Q&A. Trolls see a group size and think it's easy pickin's! Cindy Reynolds
  3. My experience with the D3 regimen was a Godsend to this [at the time] chronic patient. I watched 100's (honest) of people become pain free using it as written.The most successful are those who begin with getting their baseline 25(OH)D levels done first, then go for it. The only substitution I made was I used honey in place of the Boron. Sticking to it AS WRITTEN is key! D3 test kits available online or most GP's will be glad to send you to their labs. My test came back at <33ng/mL. Cluster patients report relief at <65ng/mL. All the supplements are important, but I think it's also important to know why. Vitamin D3 converts to calcium in our bloodstream. Calcium is an exciter. We don't like exciting things. K2 moves the manufactured calcium out of our bloodstream and into smooth muscle, tissues and other organs. Perfect, because calcium is an exciter. We don't like exciting things. Vitamin D3 isn't really a vitamin. It's a non-steroidal, anti-inflammatory hormone. Magnesium is a relaxer. We like things that help relax us (eat cheese, lol...don't want to be too relaxed). We're prescribed "calcium channel blockers", "steroids" to reduce inflammation and if we go to the ER, magnesium is often included in the pain drip. Red, I highly recommend giving it a try. For me, it didn't stop them completely but it reduced the intensity, frequency and duration enough for me to do cartwheels!
  4. Testing, testing, testing Love the new forums user interface! Can't wait to see you guys in Chicago.
  5. Tyler Mann, CH patient & Documentary Filmmaker Cluster Headache Documentary Film Project Launches Date-Feb. 10th, 2015 Documentary Update #1-March 8th, 2015 Long Term Project Goals https://drive.google.com/file/d/0BwHf09yeneJnM2xwRHEwQXNaMU0/view?usp=sharing
  6. Thanks CHfather, Jeebs & Diamondmaker.... it was a gift from the CH Gods! This treatment may just be gift #2Â Â
  7. Great thread! I'm on my second treatment of 5-MeO DALT...while I had a pf summer, the clusters returned mid October. I'm really excited or interested in the "ghost" attack comments, so thank you par for mentioning. I experienced these too, but didn't count it as attacks, however they were much more than what I normally call 'shadows". I could feel a sort of rolling sensation. I know this sounds odd, but if you've ever experienced sea sickness in your gut and could imagine moving that into your head, then you've got the gist of what I'm talking about. lol. Very strange, but not a single pain attack so far. Great research Lt2 and thanks so much for sharing. I was honestly quite scared when the attacks came back so soon. Only 4 months of pain free time (after being chronic for 6 1/2 yrs) and knowing my remedy (Sansert) is no longer available added to the fear. I've been a steady buster girl for 4 yrs. This new triptamine is working for me so far, and I'm so, so happy!!! Mom
  8. I went to book my hotel room online today and got a note: "Not available during your requested days"...... So, I called the hotel, and got a room but was told all the blocked rooms (set aside for the conference) have been booked for the night of 20th & 21st. The hotel still had rooms and will give you the conference rate, when you phone in and explain. Just an FYI.
  9. As Seen on American Academy of Neurology- THIS IS WORKING-IF YOU HAVEN'T WRITTEN, THERE'S STILL TIME EXTENSION! Please Request CMS to Reconsider Oxygen for the Treatment of Cluster Headache http://cqrcengage.com/allianceforheadacheadvocacy/app/write-a-letter?0&engagementId=49273&lp=0 Your Help is Needed! Several years ago the Centers for Medicare and Medicare Services (CMS) decided it would no longer pay for oxygen for the treatment of cluster headache. This is a serious hardship for many of the most disabled headache patients. Headache experts and the American Headache Society appealed to CMS to reverse this decision but they refused. Consequently, we are turning to Congress, asking them to encourage CMS to reconsider this appeal. As a result of these efforts, Nebraska Senator Johanns and Delaware Senator Coons are circulating a letter for all Senators to sign urging CMS to re-evaluate this situation. To have the best chance of success, we need to have as many Senators sign the letter as possible. Please contact your Senators and ask them to sign the Johanns/Coons letter encouraging CMS to cover oxygen for cluster headache. Below is a sample template letter that you should feel free to edit. If you can insert a personal statement about how cluster headache has affected you, your family member, or your patient, the email will be more powerful. The deadline for the Senators to sign has been EXTENDED until Thursday, May 22 at 5PM! Please contact them now. Questions or additional information from you or your senators can be directed to: Ally Mendenhall (Ally_Mendenhall@Johanns.senate.gov) or Jonathan Stahler (jonathan_stahler@coons.senate.gov). Here is what you should do: (Cindy added this simple form letter link. It's so easy! The letter is written, you simple fill out your form and hit send) http://cqrcengage.com/allianceforheadacheadvocacy/app/write-a-letter?0&engagementId=49273&lp=0 Go online to your Senator's website. You can find the url here: http://www.senate.gov/general/contact_information/senators_cfm.cfm Click on email Senator Fill in your address and type in your request. I hope you will take just a few minutes of your time right now to send this message and share this request with others. Very truly yours, Elizabeth Loder, MD, MPH AHS President
  10. Thanks CHfather I hope you got my note M'Joe...very exciting that you've already begun a relationship with your representatives. I'll do everything I can to help give you the tools to begin a new conversation with them about cluster headache advocacy work (really all primary headaches). Thanks for reaching out and sharing! Cindy
  11. Thanks for asking Tony, and answering Bob. I went looking for the "Playing Well Together" link just yesterday.
  12. LOL.... ThatHurts...You are so right! I just forgot to add a specific number. Fixed that It's so great to see all the comments on both the Change.org "sign on" letter and the SSA public comments site. I'm reading through the SSA site now...I see AgentOrange (former member here) and CHFather too. YES! And a bunch of the AHDA (The Alliance) Docs too. Good stuff. We're up to 640 comments on the SSA page and 950 signers on the Change.org letter!!!
  13. 1961mom

    CB on TV

    Today, we learned the Kirt Kessler/Dr. Young spot is airing all over the US! Possibly NBC and it's affiliates are running with this today. WIN! ps...MoxieGirl, I totally agree. That's an all inclusive piece for sure!
  14. We have another...she's a 2x returning HOHer has both SUNCT & CH.
  15. To see more media from soup to nuts for DC, go to the thread titled "CB on TV" list started by Tommyd in "General Tabs"
  16. Loved it! Hope he wins. The real Dallas Buyer guy, what a hero for the AIDS patient group!
  17. 1961mom

    CB on TV

    Here's a few more media pieces featuring the HOH gang And the Oscar goes to.............AL JAZEERA!!!! CH Media for HOH By Cindy Reynolds on Sunday, February 2, 2014 at 10:17am Cindy Reynolds 3/20/12 KVAL News, Eugene, OR http://www.kval.com/news/local/Instant-and-excruciating-Local-headache-sufferer-petition-congress-143568986.html Clusterbusters New Science Journalism NSJ 1/24/13 http://newsciencejournalism.com/01/2013/suicide-headaches-how-the-failed-war-on-drugs-is-perpetuating-the-worst-pain-that-humans-experience/?COLLCC=2902169818 Mike Scott 11/19/13 The Atlantic Journal http://www.theatlantic.com/health/archive/2013/11/cluster-headaches-the-worst-possible-pain/281524/ Jason & Lisa Cameron 2/2/14 The Metro West Daily News Marlborough, MA http://www.metrowestdailynews.com/article/20140202/NEWS/140209632/11575/LIFESTYLE Cindy Reynolds 2/6/14 KVAL Eugene, OR News http://www.kval.com/news/health/Cluster-Headaches-Medicare-Oxygen-Suicide-Disease-246020481.html?tab=video&c=y John Bebee 2/7/14 Great Falls Tribune http://www.greatfallstribune.com/apps/pbcs.dll/article?AID=2014302070030 Bob Wold/John Bebee/JP Summers/et al 2/14/14 Al Jazeera AmericaThe 2nd link is to the original article, the video portion was removed. Please go to youtube link for video. http://www.youtube.com/watch?v=yMOwOvKSu4E http://www.aljazeera.com/video/americas/2014/02/cluster-headache-patients-seek-pain-relief-2014213121725317639.html Kirt Kessler/Dr. William Young 2/26/14 WGAL Lancaster, PA News http://www.wgal.com/health/video-cluster-headaches-cause-agony-for-sufferers/24677706
  18. I also wish you well ClusterHeadSurvivor. Just differing opinions regarding approach. All the Best, Cindy
  19. We asked people to "Pledge" to share our HOH "Causes" Fundraiser Campaign and they did! We met our goal of 200 Pledges a day or so ago and we still have 10 days before DC. Check it out https://www.causes.com/posts/896006?conversion_request_id=4511931&recruiter_id=188095377&utm_campaign=share&utm_content=post__photo&utm_medium=update&utm_source=tw
  20. I personally feel this forum is the wrong place for such a post... and honestly in very bad taste. I mean if you think about it ClusterHeadSurvivor, it's like you've come to a party (where volunteers spend hours upon hours maintaining the house), invited fellow guests (who are free to start warm fuzzie threads without having meds crammed down their throats) to leave and join you in your own party. Odd. I think this should be removed. That's just my opinion. ps Clusterbusters maintains 2 Facebook pages and Admins "Clusterbuster Advocacy est. 2012" group.
  21. Hey Shaggy! Good to see you Just an aside.....We've got another couple signed up for Headache on the Hill from Bend, Or! Look out Wyden, Merkley & Defazio
  22. This thread is so exciting to read and follow.  In my mind, a dedicated cluster body (lol, couldn't resist) patiently moving through obstacles is how we all win. Thank you big time, for all the work you guys are doing to push forward with the Wiki project. I personally don't think there's a more qualified group to take this on. The patient community, really all folks searching for timely, accurate and valuable information benefit. Our subject matter is rife with myths, so everything you guys are doing with this project has the potential to also do some mythbusting. I've been interested in doing more research on how Clusterbusters could gain better SEO (search engine optimization) with Google too. Clusterbusters created a Google page and a YouTube channel in order to post the "Headache on the Hill" fundraising video this year. What I noticed when doing Google searches after this went up, is that Clusterbusters Google page came up a few times. Another thing, an author who agreed to donate a portion of her ebook sales to Clusterbusters did an interview with the Huffington Post. I posted her promotional banner on my personal Google page. She googled her interview, posted her findings in our CB FB Advocacy group and here's what came up... "Look what shows up on the first page of Huff Post Live Nancy Redd if you google it....." All of this makes me wonder if there's a way to use our "Google" page to increase search returns. The GooglePlus page was put together quickly. The goal was having our own source to upload the fundraiser video, but I believe the page has potential to be used to increase traffic to our website along with sharing information in a manner that provides more mainstream recognition in the area of psychedelics & research. Kind of feel like there's more than one way to skin a cat...gross, but you know what I mean, lol.  This won't provide the secondary articles needed for Wiki admin to agree to cite the primary psilocybin study but if Google chooses Google user pages first as a sorting mechanism maybe we use the GooglePlus site as a first step? Here's the Clusterbusters Google page and YouTube Channel links. Google Plus Page: https://plus.google.com/117179737802015723585/posts?cfem=1 YouTube Channel: https://plus.google.com/117179737802015723585/videos?cfem=1 ;)Cindy
  23. This is one of the best holiday gifts we could have ever wished for!!! Thank you Bob for all your hard work. This is a great accomplishment for you personally, for the entire board of directors and of course for the patient group.
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