1961mom

We have to win $1721.00 to top our last Vegas trip....that's what we won......we spent much more! LOL Confucius say: Never win big on day one of Vegas trip grasshopper. You feel rich all trip long & spend 3x what you win!

[move]We are just getting better & better in every aspect of our own recovery! [/move] WAY TO GO FG!

DONE! This was by far the least confusing CH survey I've taken. It's such a difficult task to include in question form all the possible permutations CH patients may have experienced.

Spiny...... I agree! Thanks to alleyoop & mad6string I had my first deep fried pickle a couple of years ago in Atlanta.....epicurious the lot of you! [move]           deep fried          [/move]

More discipline, I guess! lol

I've been having success for the past 4 nights by taking promethizine (benedryl on steroids I've been told)....I thought it might be due to the histamine involvement??? Now I don't know what to think! :-/

So True! This is the part of "Citizen Science" that I Love/Hate! Why is it that WE are on the "cutting edge' of treatments and not folks in the early 1900's!! I know I'm whining here and I also know if this is genetic my descendents will be proud of all of us, but sheesh!!!! I just had a young man that I've been supporting via phone/facebook go in on Friday for the permanent ONSi in Canada. I pray it works for him and I'm sad that it didn't work for you Dan! And I know this isn't the thread, but as far as the new name (replacing cluster headache) here's some more 2 cents....if they're referring to the device as a Deep Brain...blah, I think let them pay for the marketing AND our name change!!! We're DEEP BRAIN [fill in the blank] patients! Â

Very interesting to me, didgens! I'm a chronic. I've used the busting methods for 2 years now & although I do usually enjoy about 10 days pain free (or mostly pf), the attacks return, and I do another treatment. What I've also been doing for about 2 years is going to a cranial-sacrum massage therapist. She repeatedly has said to me "Cindy, your Vagus nerve is quite tangled". I've had severe heartburn for many years. I've been aware of the too little acid as a causation for heartburn for some time now. I've supplemented with pineapple, vinegar and of course my favorite Paul Newman's Lemonade....to go along with busting  I've definitely noticed a dramatic drop in heartburn issues. I look at myself as a whole entity. I do believe everything is interrelated. Directly and indirectly. It can't not be, IMHO. So recently, knowing the Vagus nerve shows signs of knotting (via massage therapist), agreeing with you again didgens about histamines playing a role in CH, I've added one promethezine tablet to my nightly bedtime routine and have been sleeping soundly (without busting again). Promethezine is a mega anti-histamine (think Dramamine on steroids) usually given as an anti-nausea medication for migrainers. I'm thrilled that this is working for me. Glad you shared! As a side thought, I'd like to also share that I went to yet another Neuro appointment last week. Relationships of all our internal systems as causation of being a cluster headache patient came up. Except what I'd asked her about was hormonal imbalance. I shared that I'd read of many CH men who had low testosterone and that for some, hormone replacement had seemed to work. She asked me if I had any other "hormone" related issues. Fair question I thought. And although I'm in full menopause, I had to answer, "no". That conversation did turn a little light on in my head though relating to the heartburn, Vagus nerve (in tangles,lol) and the histamine intolerance that I know I have....... Thoroughly pleased to have found your thread. And, in this same manner I'm digesting my neuro's departing analogy......in fact to me it is curiouser and curiouser! She said....."There are thousands of paths one can take effecting human biological existence. Most likely hundreds of combinations to finally meet all the requirements to being a cluster headache diagnosed patient." If I can effect any one of these paths just enough to altar this existence.....I"M IN!

Spiny you can go to their site and add your name to the list too! http://www.entheogencorp.com/ And if you know anyone with 100 mil laying around send them the link too! LOL 8-)

Spiny~ I just thank God that he (your son) won't have to navigate through the crap you did for the 40 years! I'm so sorry for the pain you both are going through....hugs to you and your son :'( Cindy

:'(

I enjoyed the article...thanks for posting bb

Always one step ahead of me! LOL I was about to SPAM every category with the same message. It's not my habit to spam but on this issue, I do feel compelled to share how diverse this organization has become. I attended, felt extremely supported by this organization and the AHDA and am very excited about our future funding possibilities through these channels. Even if this doesn't produce results in my life time, I know one day it will produce the results for my descendents. If it's genetic, I'm breathing a sigh of relief right now as I type! I know this "front" in this "war" isn't for everyone, but considering how far we've come from being considered an underground group of experimental's who emerged off the Kesey bus...Further we're poised for some hard-earned, mainstream funding. I thank every PinkShark, Flash or Pinkfloyd who resisted the labeling and held true to the cluster headache patient. The suffering I did before I knew about this option seems inhumane to me at times. Cindy

I like that you inserted the angel emoticon Blue! Their truly were CH [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] amongst us that day! The incredible synchronicity of our event (angels among us) to what was occurring directly across the street from the Capital at the US Supreme Court couldn't have been more perfect! The constitutionality of Obamacare arguments opened that morning! It's like the place was "a buzz" with Health Care issues and it was wonderful to not have a partisan issue! In fact because headaches per se are a universal healthcare concern, I didn't even try to explain to the folks I met on Constitution Avenue how the word headache does very little to describe what we go through instead I just focused on saying "Cluster Headaches" to as many and as often as I could. Inside the Capital, the feeling was electric and exciting. I met the Foreign Minister who handled the Amanda Knox murder trial in Italy while ordering a wonderful stir-fry chicken curry for lunch. I knew I was in a room filled with the lawmakers of our entire country and it just felt great to be there! Just after I arrived at the Capital one of our CH advocates called to say she was separated from the group, had lost her appointment schedule and was running late. At this point the group had split up to go to our individual meetings....I had know way of knowing what to tell her or how to fix this for her... [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] As I sat in the Dirkson Building for Senators trying to figure out what to do my phone rang! The Alliance coordinator who had everyone's schedule was calling to tell me that one of my meetings had been moved to a new office..."Did you get my email?" she said "I noticed you didn't open so I thought I'd call you". SHE HAD EVERYONE'S SCHEDULE!!!! I was able to call our CH advocate, give her the details of her schedule and I just knew it was going to be a great day! It was! It was a wonderful event, well managed and although a bit stressful the actual morning of the event, especially leaving the hotel and traveling on the subway to the Capital....but that's another story....lol Bob Wold is a robust, compassionate, steadfast and determined leader. We're blessed to have him at our helm!

Hi Scott~ Very nice to see a post/update and have it be one where you're head is clearing! What a long road of twists & turns! Far better to be driving your new Lexus on a paved road than the BS you've had to go through on the proverbial road of recovery Merging off of the benzo's sounds like the best exit ramp and I'm thrilled to hear from you! Cindy

I am with you Spiny, one million angry faces > at just the possibility. Praying it's just not true!!!!! Hugs to you and your son while you hopefully find an alternative reason for the pain he experienced.

Love it! Can we have both? Or even Hipshots "Cranial Attack!" PS....this is how the think tank came up with...... Teenage Mutant Ninja Turtles and some chopsticks and a few cartons of Chinese food!

[move]I like           I like           I like          I like[/move]

Hi Whooligun & welcome to a new and improved way of life! I've been chronic for 4 years now, but the last 2 years have been "chronic with an effective treatment", which is far better than "CHRONIC PERIOD" Because I hit an emotional low after my first few treatments (when the activity would ratchet back up) I like to share my new and improved sentiments & outlook. It's very easy to get "down or irritated" when the beast returns after a treatment. Even if it's 2 weeks later, I would still find myself questioning if I was doing things correctly or worse was I never going to be consistently pf?? Once I began to read or hear other chronic's tales of busting I realized I'd be far better off recognizing that my "treatments" were definitely something far easier to live with than the consistent attacks & shadows in a life w/o treatment. Incredibly, your doctor's response to O2 and it's effectiveness is pretty common (sad :-/). Getting the relief oxygen has brought to so many of us shouldn't have to be a fight. Your relief is first & foremost, so if you can find a proper set up through the welding supply houses, go for it!!! If you have a follow-up visit scheduled with your doc (and you're already finding your welding tank set up on the web) consider your visit to be an opportunity to edu'macate by sharing the following articles. The sources are credible!!! http://journals.lww.com/neurotodayonline/Fulltext/2010/01210/Major_Study_Confirms_Efficacy_of_Oxygen_Therapy.13.aspx http://www.ouchuk.org/html/news/Oxygen%20and%20Cluster%20Headache.pdf My motto: "Treat thyself, edu'macate ignorance" CindyÂ

Untimely Post Error! Geez...I've done this many times (laugh with me here) where I respond to something written on page 1 of the thread w/o looking to see there's been about a zillion posts since then! SORRY Can I get a "oops, there it is?"!!!!!

Very interesting thread...here's a thread where med students are discussing hpyocalcemic tetany & it's meaning. http://www.prep4usmle.com/forum/thread/13791/ I removed calcium from my daily intake of supplements. It seemed to heighten my 'activity' but maybe reintroducing along with my d3 would be beneficial??? I've never liked the "too little can result in the same effects as too much" situations!!! Totally agree w/ CHfather I hope your doc is informed met la & writes you the 02 script posthaste! 1961mom

Hi Moxie! Thanks for painting a mental picture so engagingly real & equally terrifying in the opening paragraphs of your article that it rivals with the shower scene in Psycho!....[insert, areek-areek creepy music here] Ok, well maybe that's because I've played "Samantha" in my high school production, my college production, my Birth to Three fundraising production (lol, you get the picture!) I'd like to see an ending where it sets the next article's intro of a Samantha who wants to help herself, but the onslaught of dealing with all the issues you've described (the pain, uneducated medical community & workplace, the word "headache" and the fact that the most promising treatment is classified as a schedule 1 drug) sends her into isolation. It would be wonderful if the "series" finds "Samantha's" battle fronts as multi-layered, but through near impossible odds, including suicidal thoughts, she (and her fellow CH community) find strength of Herculean measure to "disassemble the propaganda, myths, untruths and brush-off" she's endured. I'm a romantic....I love an epic nonfiction where the heroin prevails, even if she isn't cured!!!! THANK YOU SO MUCH FOR CONTRIBUTING TO MY WELLNESS IN YOUR TALENT TO WRITE!!! Cindy

Dan....if I could have found bootlegged copies of Shawshank, I'd have snapped them up and had them as "Welcome Gifts" for our DC trip!!! Now looking for purple bowlers! xxoo

The only thing I see missin in your beautiful cabin is...of course DEKBLOCKS! http://www.deckplans.com/ In the early days we called ourselves "2 guys & a girl" trying to make a livin! Just looked at the youtube shots, nice to hear your voice!

My favorite line from "The Color Purple"... I think it pisses God off when you walk by the color purple in a field and don't notice it Shug Avery And then there's my favorite line from "Shawshank Redemption"..... Andy Dufresne... who crawled through a river of shit and came out clean on the other side. Red Purple & Red....makes perfect sense to me! If we're talking, that means others are talking, if others are talking hopefully, someone is listening.Â