Bejeeber Posted May 7, 2013 Share Posted May 7, 2013 I am now officially a Chronic CH sufferer UGH, really sorry to hear that. :'( am now reconsidering my decision to bust! Understood where you're coming from there, as a whole bunch of us busting folk (I'm guessing most of us) kinda ran the gamut of conventional meds before getting down to the busting. Here's to some serious beast busting for you! Quote Link to comment Share on other sites More sharing options...
CHfather Posted May 7, 2013 Share Posted May 7, 2013 Brad, I join with Jeebs (and others, I'm sure) in really regretting your current status. I've always respected your choice not to bust . . . but it seems that enough is definitely enough! Maybe you might try licorice root, too? http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210/ Are you using energy drinks and/or melatonin?? Quote Link to comment Share on other sites More sharing options...
blueballs Posted May 8, 2013 Share Posted May 8, 2013 Description: Cluster headache attacks occurring for more than 1 year without remission or with remissions lasting less than 1 month. Diagnostic criteria: A.Attacks fulfilling criteria A-E for 3.1 Cluster headache B.Attacks recur over >1 year without remission periods or with remission periods lasting <1 month Comment: Chronic cluster headache may arise de novo (previously referred to as primary chronic cluster headache) or evolve from the episodic subtype (previously referred to as secondary chronic cluster headache). Some patients may switch from chronic to episodic cluster headache. http://www.ihs-classification.org/en/02_klassifikation/02_teil1/03.01.02_cluster.html Quote Link to comment Share on other sites More sharing options...
Hipshot Posted May 9, 2013 Share Posted May 9, 2013 No problem Venifica. Anything goes around here. Diggin the tats by the way Dan Quote Link to comment Share on other sites More sharing options...
Donnie S Posted May 9, 2013 Author Share Posted May 9, 2013 still in a rough patch.backed off to 5 days between busts which was last night.slept 6 hours but it was there as son as i opened my eyes just like it has been for a week to 10 days now.the 02 backed it off for a few mins but it came right back and is still hangin around ben about 4 hours now.never happened before.the majority of my hits have always been at night but gettin them all times of day now.everytime i fall asleep day or night 90 to 120 mins and boom.ive even had 3 just general headaches that after couple hours have moved o one side and turned to a cluster hats never happened before.to top it off yesterday the valve seized on my o2 tank and wouldnt open they delivered another it worked fine til today now the regulator seems not workin right cause the bag is empty after about 3 breaths.this is insane Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 9, 2013 Share Posted May 9, 2013 Insane indeed. Jeez Donnie, you must really be asking the big WTF???!!! To have the attacks intensify right at the time your valve/regulator goes on the blink, that's un-freaking-believable. > It definitely sounds to me like time to graduate to a higher LPM regulator or demand valve system anyway (if you're still on a 15 LPM), since your results at that relatively low flow are waning, but to have yours actually not working now is thoroughly un-thinkable. 15 LPM doesn't do jack for me and some of our other head banging compadres BTW. Hang in there somehow , very sorry to hear of this journey through hell, and best of luck getting to a higher O2 flow really quickly. Quote Link to comment Share on other sites More sharing options...
Donnie S Posted May 9, 2013 Author Share Posted May 9, 2013 bj you took the words right outa y mouth lol.ive only the optimask couple weeks and was gettin along fine with 15lm prhaps cause i was gettin less with the other mask.maybe in time 15 wouldnt cut it for me either but buddy id be quite happy with my 15 right now.his is 2 days in a row my provider has given me shit for equipment and they are 2 hours away.im on the hunt for a better regulator....and a new head too if i can find one.not sure swappin with anybody on this site would help much tho lol Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 9, 2013 Share Posted May 9, 2013 Now that you mention it, it would be tuff to find any WORSE place for head swappin'. Quote Link to comment Share on other sites More sharing options...
Brad Posted May 10, 2013 Share Posted May 10, 2013 Brad, I join with Jeebs (and others, I'm sure) in really regretting your current status.I've always respected your choice not to bust . . . but it seems that enough is definitely enough! Thank you! So good to talk to yall again!! For over 20 years I could always say that "at least its only about a month or so". Not anymore. The beast has become possesive and persistant! I have been working in the sun and dealing with terrible allergies lately, leaving me completely exhausted. HDs are like clockwork about every late evening skipping an average of 1 or 2 days out of the week. Raw unfiltered apple cider vinegar has been working now on holding back the hayfever. Anyone hear if could be used for CH? Quote Link to comment Share on other sites More sharing options...
Clusterman59 Posted May 17, 2013 Share Posted May 17, 2013 Been Chronic since 1973 less a 3 year remission from 79 to 82 and a couple years with 6 month cycles but have been CH free for just over 6 months on the D3 regimen and last week i got hammered 5 days in a row after changing D3 brands a week prior to the "Discount" brand. It seems and I have heard of tests on the actual amount of D3 in certain brands that some are grossly deficient. I had the opportunity to bust with shrooms so i did and am Ch free again and stopped the D3 regimen to see if it was the busting that worked. It seems to have worked so am a very happy guy right now and waiting to see how long the busting is effective. Being chronic for so many years and battling depression on a monumental scale is I believe part of being chronic as the never ending pain is such a horrible feeling knowing after years and years of unrelenting hits that it will never end. The D3 regimen is a godsend and so is busting as i would highly recommend either one to folks that are looking for the desperate relief that they deserve... Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 17, 2013 Share Posted May 17, 2013 Been Chronic since 1973 I can't imagine anyone going through about 35 years (after subtracting your PF interludes) of being chronic, and how on earth you were able to withstand that. So sorry that had to be you C59, but dam happy that you have a remission in the works again. PHEW. Now down to details: Quote Link to comment Share on other sites More sharing options...
Clusterman59 Posted May 17, 2013 Share Posted May 17, 2013 Yeah it was "Rite Aid" brand of D3 that I switched to after taking "Natures Made" for almost 7 months and got hit 7 days later for 5 days in a row with over 10 hits a day and many K10's so I swear by Natures Made brand but there are other good brands and GNC comes to mind and then Batches recommended brand "Kirkland" distributed by Costco. Yes it was vitamin M that I busted with at 1gm daily for four days and going on 5 days CH free now. As far as dealing with being chronic for so long I have to say that i stood on the edge more times than i care to remember and attempted it 3 times. I am so thankful that I did not succeed and believe that I have a purpose for being here. I was a commercial fisherman and captain for over 30 years and had no choice but to cope as the alternative was to quit what i loved so dearly and dwell on the pain in which I have no doubt would have shortened my life and is what kept me working. It was incredibly difficult to say the least but I knew if I quit then CH would have ruled my life so I chose to live, work and suffer but was the right choice as I have a wonderful son and he keeps me going now. I had 17 major operations that ended my career at sea and almost took my life several times over. I have severe chronic nerve damage from all the surgery and live at 5 to 7 on the pain scale from that with CH on top and this happened in 97 so until i found the D3 regimen about 7 months ago life was bad but as I said my son has kept me going and fighting the good fight... Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted May 18, 2013 Share Posted May 18, 2013 I had 17 major operations that ended my career at sea and almost took my life several times over. I have severe chronic nerve damage from all the surgery and live at 5 to 7 on the pain scale from that with CH on top and this happened in 97 That's just un-fecking-believable. Now I REALLY can't imagine... :'( Quote Link to comment Share on other sites More sharing options...
alleyoop Posted May 18, 2013 Share Posted May 18, 2013 So, C59, if I'm placing you right, you fished for tuna? Quote Link to comment Share on other sites More sharing options...
Clusterman59 Posted May 18, 2013 Share Posted May 18, 2013 Yes I fished for tuna for 16 years and was just part of my career at sea...The pain right now is what it is and I have learned to live with it and my life is going really good right now so no worries here. Hey I'm CH free right now! So there is light at the end of the tunnel! ha! I have a cool jewelry business where i go to the deserts and find stones and crystals and turn them into really cool jewelry and am doing good with it. I can walk at my own pace and take my time so it's not to hard on me and I also created the CH ribbon project so I have alot of good things going on in my life right now!.. I'm also a moderator on the"Cluster Headaches" facebook CH support group and enjoy helping others immensely. So life is cool and I have my son and we have a great relationship and do lots of things together, he is 21 and working and in college and doing great! So I can't complain... Quote Link to comment Share on other sites More sharing options...
alleyoop Posted May 18, 2013 Share Posted May 18, 2013 Now I've got you placed. We have communicated on FB. Your story and jewelry are both amazing!! And congratulations and thanks for all of your hard work on the ribbon! Bob Bowling Quote Link to comment Share on other sites More sharing options...
Clusterman59 Posted May 18, 2013 Share Posted May 18, 2013 Hey Bob! Good to see you here! Thank you as the ribbon project is a total labor of love and to help CHers all over the world and it is proving so far to be a great success and I haven't even sold anything yet! ha! I do have hundreds of folks wanting multiple ribbon products and ribbons so that's what I mean by success so it won't be long before all are available. Cluster Busters has the exclusive to sell the ribbon package and will be the U.S. distributor of the ribbon itself and am going to sell the ribbon products in Dj's CH dot com's online store with the proceeds going to Cluster Busters(Bob Wold) then Cluster inc. (Pete Batch) and CH dot com(Dj) and just keeping 10% to fund printing, shipping, hidden costs, marketing, fund raisers etc... So all the money is going into CH in one way or another.If the 10% proves not to be enough then I will pay out of my pocket and if it proves to be to much then excess will go to Cluster Busters... Quote Link to comment Share on other sites More sharing options...
alleyoop Posted May 18, 2013 Share Posted May 18, 2013 This is exactly what I was talking about in the "Success with Mushies" thread, and just another example of the legions of behind the scenes workers. Quote from that thread: Dan and Lee Ann.... I'd just like to reiterate that the Nat Geo Video, you guys so graciously volunteered for, was a HUGE factor in getting "the busting idea" into my life. Several years ago, when I joined ClusterBusters, my wife was very sceptical of Internet Groups and their ability to offer good advice on anything. She was also extremely apprehensive that some sort of hallucinogenic mushroom would give me any kind of relief. After seeing the Nat Geo special and meeting the both of you at last years conference in Las Vegas, SHE WAS TOTALLY CONVINCED! She bought the video and has seen it several times. She immediately approached Todd from "2FunGuys" at the conference and had me set up with advice and products on growing mushies. Your courage, guts, and commitment to "getting out the word" ..... has undoubtedly helped me in the battle against the Beast. I simply cannot thank you enough ..... weatherman This is what Clusterbusters is all about! And of course it is only the tip of the iceberg. Thank you for your feedback Weatherman and for the kudos to Dan, Lee Ann and Todd. They all are truly unselfish heroes, and deserve our eternal gratitude! But of course it goes without saying, so do so many others that are actively contributing both openly and behind the scenes. There are so many people out there that most have never heard of, that are contributing so much to our cause, that it is mind-boggling! And whether he wants to take credit for it or not, we all owe an eternal debt of gratitude to one man - Bob Wold, for his selfless and persistent dedication towards a solution to our common affliction!!! We love you Bob, and you will always remain my hero! I say this with the utmost humility and sincerity, Bob Bowling And kudos to you CM59!! Quote Link to comment Share on other sites More sharing options...
Clusterman59 Posted May 18, 2013 Share Posted May 18, 2013 Thanks Bob! I will continue to push the ribbon project forward to help fund research, help with awareness and the ultimate goals of new medications and or the cure!!... Quote Link to comment Share on other sites More sharing options...
blueballs Posted May 21, 2013 Share Posted May 21, 2013 Your screwed, we know who ya are now...lol ;D bb Quote Link to comment Share on other sites More sharing options...
Clusterman59 Posted May 21, 2013 Share Posted May 21, 2013 Haha!! Busted!! ha! I figured that doing this ribbon project that everyone will know who I am anyway! ha!...Johnny... Quote Link to comment Share on other sites More sharing options...
blueballs Posted May 22, 2013 Share Posted May 22, 2013 Least I wont forget ur name Johnny. signed Johnny Quote Link to comment Share on other sites More sharing options...
Donnie S Posted April 24, 2014 Author Share Posted April 24, 2014 hey folks...havent been on in a long time just checkin in hopin to learn something new.not much has changed in my world but thank god for my 02 ... and the people on here that pointed me in that direction.stopped the busting with rc seeds about 6 months ago they seemed to be losing their effectiveness. maybe i wasnt takin enough anymore but they made me sick and didnt seem to be workin anymore anyway.my headaches didnt change a bit when i stopped the seeds.i get hit hard and often and havin hard time keepin up with the bills from the meds and 02,even with holding down a full time job.hang in there and everybody take care. Quote Link to comment Share on other sites More sharing options...
CHfather Posted April 25, 2014 Share Posted April 25, 2014 Donnie, I am very sorry to read this (glad the O2 is helping, but not happy about anything else). If the RC didn't make you sick, would you consider going back to it, maybe at higher doses? If so, would you tell me/us how it was making you sick? Stomach upset? Nausea? Maybe there are some ideas that could help you -- if you feel like trying it again. Do energy drinks help at all? Melatonin at night? Are you doing D3? Just trying to think of relatively affordable things you might do. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted April 28, 2014 Share Posted April 28, 2014 Donnie, Was it the same batch of seeds you had been taking? The seeds start to loose their chemical content and quickly so, right around 6 months old. Try getting fresh seeds and/or try fungus. Fungus is much more consistent in strength and keeps a Loooooong time. J Quote Link to comment Share on other sites More sharing options...
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