Clusterman59

Hey all! I have just had my eyes opened by a certain member that showed my errors with the Cluster headache foundation and ribbon store. THANK YOU for bringing to light a perspective that eluded me. There will be serious changes to the whole project to help eliminate any concerns as to the motives of this project. We want to see this cluster headache ribbon be the accepted ribbon world wide for cluster headaches. The circle C will be removed from the ribbon and be available for anyone wanting it and can use it anyway they feel is appropriate. The store and products will be removed in the very near future. Our goal all along was just to help bring in funding for Clusterbusters and Clusterache inc. To truly be of help to their wonderful, incredible work. NOT to imply we were trying to make money off of this but to only keep the project alive. I now see the error in my thinking... Thank you "That hurts my Head" I want to apologize to everyone in the cluster headache community for getting the impression that we are "ABOVE" anyone in the Cluster headache community. This was not how we wanted to be perceived and MOST definitely not our intentions. Our goal was to just help others in the CH world and be of help to those who suffer and we maintain that point of view. Serious changes are coming and we appreciate your patience while we figure the best way to be of help in the future...Thank you all very kindly....John

That's wonderful Brad! Really wish you the best of luck to get CH free! Keep on Bustin!

Ripper! You just got a taste of the great folks here and I too was helped by these guys in more ways than one! Great family of headbangers here!! Have a great vacation!...

Hey Wiggyworks!! Ha! I'm the guy that designed the o2 system with the 20 feet of hose so you can walk around and I also told you to sleep in the lazy boy!! Lol!! I do understand and care a great deal for those that suffer as I have been a chronic CHer since 1973. I want to help those that have chronic pain as I also suffer from severe nerve damage from 17 major operations many of which were botched. CH, Migraine or other headache disorders or just plain nerve damage or chronic pain in any shape or form is just that...PAIN!!... We all suffer differently but it is what it is and pain is a serious cause of depression no matter how severe. If it is chronic and never ending or episodic and intense It effects us all in many different ways and should be given SUPPORT, RESPECT and UNDERSTANDING....

Here is the D3 regimen...Please read very carefully and it's best to have your doc on board and if he or she has concerns just direct them to Batch's thread. Some folks have medical problems that effect taking the regimen adversely so thats the reason to have your doc involved. BE SAFE... I am not a doctor so I just try my best to help with the regimen and if I can't answer your questions then I will direct you to Pete Batch who is the man who created the regimen and all you have to do is click on his name (Batch) and then click on "send a personal message to Batch" and he would be happy to help anyone with the regimen...Good luck to all and be patient as it can take as long as 8 weeks for the regimen to work effectively and be sure to get your 25 ohd lab tests to keep you safe and in the pain free zone of 60 to 110 ng/ml range it's VERY IMPORTANT and take the survey after 30 days pain free or not....Johnny... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

Hey ipain... If you have been on the regimen for a year or more and your last test was only a 45 ng/ml your levels are to low but you need to get a 25 ohd lab test to see where your level is? As we can't do this properly until we know what your D3 level is so please schedule a test asap and you shouldn't need to go the 50,000iu for a week I would just do it for two or three days and that should help you and then just do a 50,000iu loading dose weekly and up your dose to 15,000iu daily (as instructed by Batch) so hang in there... I will post the D3 regimen and yes you need to do the lemonade with the regimen and just follow the regimen exactly and be sure to do the cofactors of 400 mg of Magnesium, Zinc and vitamin K2 as that usually helps greatly....Best of luck to all and please feel free to message me if you have concerns...Johnny...

I have been reading your thread and see you have had great advice. I did notice that you said your taking the D3 regimen...When did you start and on what dosage are you on?? If you are taking the calcium supplement then drop it now and do a daily loading dose of 50,000 iu for a week then get your 25 ohd lab test done to see where your level is as you want to be between 60 and 110 ng/ml to be in the pain free zone. Doing this dosage for a week will not hurt you in fact it should help you to be pain free quicker. I'm guessing that you started the regimen when your cycle started and dosing at 10,000iu daily may take longer than your cycle to end that's why i suggest the higher doses of D3 to get you in that pf zone quickly. I work with Batch on helping folks dose and tweak the regimen to work for you so I have alot of experience helping folks with the regimen. As you know it does not work for everyone but it won't work at all if your levels are to low....Best of luck and let me know what you have done so far with the regimen...John

Wishing you the very best Chris!! I hope this time around won't be as difficult as the last so hang in there and again if you can only make it 3 or 4 days then take the step and go for it!!...

You are in quite a vicious cycle Chris and the meds your taking have a tendency to cause severe rebounds, more severe, more frequent, longer lasting CH's and make you highly dependent which is the case for many sufferers. I was in this cycle too and so happy I am now off all CH meds for 7 months now and just busted over 10 days ago and have been pf since. I have had great success with the D3 regimen but I know it and busting doesn't work for everybody just the large majority. 80 % for D3 regimen and over 90% for busting both of which are better than any med offered to us by the medical profession both being with little to mild or no side affects. I understand the D3 regimen did not work for you but there are ways to tweak it to make it work more efficient and should be given 100% effort and don't give it up if you are in the pain free numbers of between 60 and 110 ng/ml and not getting relief but try modifying the rest of the regimen like trying 400mg magnesium for example and vitamin A and K2 and if it still doesn't work you need to talk to Batch and also you may need to see an endocrinologist for more answers. I had switched D3 brands and chose a discount brand and paid for it as it apparently was grossly deficient in how much D3 was actually in the doses and got hammered 5 days in a row. That's when I had the opportunity to bust and it was successful after 1 gm per day for 4 days straight. I have stopped the D3 regimen to see how long the busting lasts but do plan to continue it as it has great health benefits regardless of helping CH. My whole point is I'm CH free and CH med free and these alternatives and dropping all CH meds were the best thing I have ever done since my first attack in 1973 and being chronic about 95% of this entire time. Don't give up!! Try again and go ahead and bust in three days if that's as far as you can make it getting hit so bad as you have been warrants it. It is worth trying no matter what! Go for it girl!! We are with you....

Haha!! Busted!! ha! I figured that doing this ribbon project that everyone will know who I am anyway! ha!...Johnny...

As BJ said you have a bunch of folks cheering you on and knowing you will make it!! The night hits seem to be the worst and that was my biggest obstacle too as when your gettin back to back K-9's and 10's it does take a toll but melatonin starting at 10mg and building up to 24 mg "IF necessary" did help me and many others that I know but some times as everyone is different they may take some time to build up in your system but well worth trying to get you through. When the o2 doesn't work or you don't have any I would use 2 bags of frozen peas that form to your bad side and neck and chew popsicle's on the bad side. Sometimes a very hot bath as hot as you can stand it helps too using really hot wash clothes on your neck and bad side and do it with the lights off in total darkness and that process does tend to relax you and many times for me would give me some extra sleep time. I too used to use a vibrator and not always but many times would help...WERE CHEERING YOU ON CHRIS!! YOU CAN DO IT!!...

Hey again Chris... I saw your post over on our fb site and commented there but wanted to just say to stay as positive as you can as friday is your big day and you can make it. It may take several busts to work for you but even if it doesn't work which I think it will but even if it doesn't you have beautiful children that need you and you can draw strength from them even if it is just looking at them as I take one look at my son and know that I could never leave him and I have been where you are many many times...He is my rock after the best part of 40 years chronic he is all I need to keep fightin the good fight... Keep smiling!...Johnny...

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!!...

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...

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...

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...

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...

Hey All!! I have been a chronic CHer since 1973 and had a 3 year remission way back in 79 through 82 and have been chronic ever since so i believe that's about 37 or 38 years of chronic madness! ha! I have been CH free for the last 165 days on Batches D3 regimen and counting! I never thought i would ever become CH free until i met Batch but there is hope!! Busting is also something i'm researching to see if i can knock out that friggin beast for good as with using the D3 regimen must be continued for the rest of my life, i would like another option. The great percentage of those who bust and end there CH is very intriguing and exciting thanks to Bob Wold!! Thanks for the nice welcome "Fun guy" and i look forward to becoming more involved in the cluster busters forum....