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Everything posted by 1961mom

  1. I'm thrilled to be sharing this work with you guys...lots of clusterlove went into making our first advocacy fundraising video. Every year we just keep getting better and better! https://www.causes.com/posts/889152 A huge and grateful thanks to these guys..... Lee Markins Mollie Markins Chris Busby Bill Mingus Jeroen Massuger #clusterlove!
  2. I'm thrilled to be sharing this work with you guys...lots of clusterlove went into making our first advocacy fundraising video. Every year we just keep getting better and better! https://www.causes.com/posts/889152 A huge and grateful thanks to these guys..... Lee Markins Mollie Markins Chris Busby Bill Mingus Jeroen Massuger #clusterlove!
  3. Would it be reasonable to investigate other medical conditions on Wiki..see how or if it's something that's done on other definition pages???
  4. Wow, you're speedy! Thanks CHFather.
  5. Ps...one edit I'd like to see go into the Wiki site is the first documented historical description which adheres to today's diagnostic criteria. If anyone's interested in editing that section? 1745 is a helluva lot earlier than 1923. In the interest of featuring just how long this condition has been known and how little has been accomplished in the area of new treatments. Also there's a guy dating back to 1600's...I'll have to go looking through my bookmarks to find that reference. Cindy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117620/
  6. Thanks for bringing this to everyone's attention Tony! I'm continually baffled by the idea of those who believe "to squelch information" is a good thing. This may be a game of cat & mouse for who knows how long! Kudos to the good ship and crew of Clusterbusters who've agreed to keep an eye out for the person doing the squelching (and edits)! Jeff, I can't help but insert a double dose of your sentiments!!! Jackass is jackass after all
  7. I'm thrilled to be sharing this work with you guys...lots of clusterlove went into making our first advocacy fundraising video. Every year we just keep getting better and better! https://www.causes.com/posts/889152 A huge and grateful thanks to these guys..... Lee Markins Mollie Markins Chris Busby Bill Mingus Jeroen Massuger #clusterlove!
  8. Some last minute (good) changes have been made! The producers of the HuffPost have moved the date of the interview with JP Summers to Monday 12/9/13 from 4-5pm CDT to add a whole panel of migraine/cluster patients to the show! This could be huge??? Could be famous folks??? Could be wonderful!!!!! So please make the changes on your calendar and tune in MONDAY
  9. Well I'm post-partum....even if it's been 23 years! lol How are you managing Platy?
  10. Listen in Live tomorrow! We have an ebook author who will be speaking live on HuffLive with journalist Nancy Redd tomorrow between 4-5pm CDT. Her pen name is JP Summers and her most recent book is title "The Storms That Fated Us". She's giving 100% of the proceeds from the sales of her book to 5 different headache organizations and Clusterbusters is one of them! Here's the link http://live.huffingtonpost.com/r/archive/search/Nancy%20Redd
  11. The neatest part? Going to the AHMA conference and having neurologists compliment the prestigious venue and the article! It's pretty nice to have a sense that our support is growing, especially among headache docs.
  12. Makes me sad to read your report Platy. I'm sending my neuro a note to get the methergine and give it a whirl. Is it also a compounded med? I'm burying my head in this enormous sand dune. Feeling very emotional about all of this. Tonight, I'm having a spot of tea as a treatment. I'll give you a shout tomorrow or the next day. Hoping your acupuncturist helps. It's like grasping at straws and spiraling at the same time. Sorry, I usually stick with hopeful. Arggghhhh.....
  13. My absolute favorite part about Headache on the Hill is answering this question with a resounding YES! Does advocacy work? You bet it does! Direct results include quadrupling funding for primary headaches and PTSD. The http://thomas.loc.gov/cgi-bin/cpquery/?&dbname=cp113&sid=cp113oBJSt&refer=&r_n=sr071.113&item=&&&sel=TOC_295778& report included specific language for clusters! Click Event Link To See More Details! http://events.r20.constantcontact.com/register/event?oeidk=a07e8greyom88f7bd79&llr=asfwt7iab
  14. You betcha, I'm sharing it like a mad woman
  15. I hope this works...As a gift for backing the project (and if I'm interpreting the message correctly) I can share this link for 7 days with unrestricted amount of views. Please let me know if this works! And Enjoy!!!! Cindy http://www.mangu.tv/neurons-to-nirvana-understanding-psychedelic-medicines-instant-streaming?c=HxJ906Bs
  16. I've never tried the Methergine. I think I'd be willing to give that option a try before I went with either the Chinese or the "Mushy, Inc." option. lol. Knowing all of this was coming down the pipeline, I gave coming off of Sansert a real college try. On Oct. 28th, my new neuro, Dr. Miguel Estavez dx me with occipital neuralgia and gave me a shot of toradol/steroid in the occipital muscles. On day 2 after the shot, I discontinued my 1mg dosage. It worked like magic until last night. It's so weird how I can forget half the stuff my doctor is sharing with me during these appointments. I get so fixated on the single item of hope that's being offered. I do believe he mentioned methergine as an option during the visit, but now it's all a blur. I had such high hopes for the toradol/steroid injection. Especially when I was successfully pain free without the 1mg for 14 days. So the guy in Brazil didn't pan out either? So far, I haven't had a call or an email from Aborn Pharmacy. I did fax my prescription to them about 2 weeks ago. I'm always thrilled when a person takes an interest to the degree this man has for us. It's not that common and I think both he and BostonDoc are champions. Still hanging onto some hope here.....
  17. Methergine, the alternative to methysergide may be in the same boat? http://www.ashp.org/DrugShortages/Current/bulletin.aspx?id=906 This was going to be my next discussion with my neurologist. I recently learned these meds were brought into the market place prior to the current FDA rules & regs. Wondering how much that has played a role in all of this or if it's the newer abortives on the market with a much higher profit center? I know this, I've felt like a normal 52 year old for the entire year! Back pain when I garden, exhausted after keeping my granddaughters for a couple of days and cluster headache free (except during med holiday). I feel nervous, scared, sad and angered by all of this... and not just for myself. For everyone world wide losing this option. >
  18. Thanks for posting those links Ricardo...going for a coffee break and a read!!!
  19. Dan, I've been pf for 1 year. I did the 30 med holiday in July and had my innards scanned for any signs of fibrosis. Clean and clear at the moment. CH returned within 2 days of my med holiday. I busted and used 02 all month. I didn't have more than a 2 day run of pain free time during the sansert holiday/bust replacement therapy month.
  20. I totally agree with you CHfather. Clarifying our goal is almost a two step process. Hopefully, one will compliment the other. With the right cluster headache "tag line" marketed initially by Clusterbusters during the HOH event, we'll enjoy even more brain-storming to link whatever is chosen into a successful complimentary marketing campaign. Where one feeds into the other to create a nice synonymous package. What's interesting is that Goadsby has gone on record stating he'd be willing to get involved in the process. In this video clip he suggests starting with nomenclature of episodic and chronic with a change to remitting and unremitting. I personally really like it because I feel remitting and unremitting are NOT associated with "blame". Chronic is a word that conjures up whining and relentless behaviors in a way that doesn't necessarily "empower" the patient, the pain they experience or any of the other ordeals or patient group seems to go through almost as a societal tacit agreement due to the meanings of the current choices of descriptive words. LOL, sorry, am I preaching to the choir here???  Forgive? These series of 9 videos where recorded in Nashville in 2011. The first video is the one where Goadsby addresses several points within this topic. 5:45 mins Begins talking about the willingness of the International Classifications of Headache Disorders. 7:27 mins Introduces episodic/chronic vs remitting/unremitting 8:26 mins Briefly mentions how he knows the cluster headache world doesn't like the words, "cluster headache" as a diagnosis but he can't do anything about that at the moment. http://ouch.clusterheadaches.com/youtube.html What's also encouraging is that the World Health Organization is behind the use of the classifications and the 3rd edition is still being edited and most likely won't be done until 2014. If we create a splash with this project, we may feather right into the next edition! Cindy's sort of an idealist on a mission lol I do love these discussions.
  21. I'd like to second Bejeeber... I once had a 9 year remission! Hoping this goes on for a lifetime for your son.
  22. Thanks for the heads up on this thread BostonDoc! I sure hope the pharmacy will honor out of state prescriptions. Anxiously awaiting your follow up phone call results and post. Thank you big time! The day before yesterday felt as though I was given an "expiration date" I made an appointment with my neurologist for Oct. 28th. Part of my discussion plan with him was to get his opinion on my options. Like Platypus, in the past (during the days before it was a compounded medication only) my experience was I could abort a cycle within 30-45 days on 8mg per day. This cycle (chronic since May 08) Sansert wasn't an option given to me by my new Neurologist until my 4th year (2012) of being chronic. I emphatically stood my ground when I found out it could be compounded by saying "You let me know when you think I've suffered enough, k? You know best. I know Sansert works. I know it can be compounded. You just let me know when you believe I've suffered enough." I made my point! I was unable to find a compounder in Oregon, so I ended up having it made in California (different compounder). The experience was traumatic. Not kidding! I ordered as much as I could and decided to take the minimum dosage to achieve being pain free which was 1mg or sometimes 2mgs during higher cycles. With the current supply I have : 181 days at 1mg 23 days at 8mgs That's how I look at it! Keeping my fingers crossed for a "yes"!!!! Thanks again BostonDoc!
  23. Rereading, this one makes me want to say..... Cluster headaches, Purgatory of pain! I love your blast of thoughts Jeebs! Keep 'em coming. It's the story of how "Teenage Mutant Ninja Turtles" came into being that I recall. Well really it's a partial story that I recall. Guys creating the comic strip were maxed out on msg, lol. Eating Chinese food from the cartons, on the 17th hour of a 24 hour brainstorming session when all the words began to slur together, get hysterically funny just bouncing one-liner after one-liner off of each other when this one was spewed out and it stuck! I don't recall why I recall this story, lol. For all I know I could be making it up! And I always think of the Bare Naked Ladies song about eating "the Chinese chicken and your brain starts tick'en!" That's just to help you visualize! Not a recommendation of course ;D There's something in this one! I love the nature word in there Jeebs! I've asked myself this one, "Is mother nature pissed? I'd love to see something that references the fact that we've found hope in "natural medicine" or "natures medicine" hmmmm Oh yeah, a simile is something I find workable too. I've often described the pharmaceutical medications we're given with this one, "Taking [insert meds] for clusters is like trying to swat a pterodactyl from the sky with a flyswatter!" lol, too wordy I know, I know...not too mention pterodactyl isn't a word people recognize instantaneously. CHfather, Oh yeah on the art! I think this one is titled "The pain of clusters". So powerful. Here's the link to see more of her paintings at Deviantart and to comment on this one. agnes-cecile did a fantastic job at capturing the visual and emotional truths of clusters. So with this one I always think of the old jokes, which never really were jokes. They fit more into the "That's not funny, that's sick" catagory....."What's black & white and red all over?" http://agnes-cecile.deviantart.com/art/The-pain-of-cluster-headache-281297639#comments One thing I know about cluster people, they're creative so I have no doubt we're going to nail this concept and make the world listen as though it's E.F. Hutton speaking!Â
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