Texas Cluster

Bonkers, I would just hate to see any of us make a mistake and end up in the grey bar motel.. Its hard enough dealing with the beast in a comfortable environment much less some where we don't want to be... and any official with in the law are swore to up hold it so I would be worried saying something and the wrong person getting wind of it.. gotta look out for that Dudley Do Right or Barny 5...lol It just sounded like people are talking to freely about it to other's they don't know and I hate seeing bad things happen to good people like all of us.. Its just a concern and in no way saying you are doing wrong just be careful   Darrin Texas Cluster

what is it that needs to be translated Carole? just curious

would love for you all to read this, even has an audio if you just want to sit back and listen. Hope for Headaches: A Conversation with Headache Expert Peter Goadsby I am also going to post it in "what causes these" thread http://www.ucsf.edu/science-cafe/conversations/hope-for-headaches-a-conversation... Darrin Texas Cluster

would love for you all to read this, even has an audio if you just want to sit back and listen. Hope for Headaches: A Conversation with Headache Expert Peter Goadsby I am also going to post it in "what causes these" thread http://www.ucsf.edu/science-cafe/conversations/hope-for-headaches-a-conversation-with-headache-expert-peter-goadsby

we all have bad CH's, I mean Karma, you're not alone birdman. ;D Is this helping anyone? if so I would like to keep this thread from falling to far down the list. Darrin Texas Cluster

Back to topic on this thread..I agree with showing uninformed people, friends and family by showing them the link to the YouTube of clusterchuck, but you know what...when I am there and watching it with them..I last about 2 minutes and start crying (40yo and cries like a baby) then get up and walk away..as I do..they ask if I am getting one now..I tell them no, its so hard to watch someone go through it when you feel and know exactly what they go through. my wife took a video of me and I didn't even know it..seeing it makes me crash, its hard to see someone go through pain when you fully understand what it is they are going through expectually when it's you on the video. I also feel like we knock Dr's down alittle more than we should (I am just as guilty on this) but it's all about ignorance we are ranting about here, they are trying to help and that's what they do..for most conditions their patients they can treat cause it's treatable.. they are doing what they can within their power legally and we have to at least thank them for trying, I know my Nero cares and wishes he could stop them for me..but we all know it's a hit or miss on our condition.. I have heard of some folks getting total relief from verapamil.. so lets all think about them at least trying. think about all this as we keep this site growing..every one of us are getting the word out there.. eventually this riddle will get answered when the right person gets wind of it, we have several working on it as we speak, but the CH community is growing and something will be found sooner or later.. so I let the ignorant be ignorant, at least I know one more person has heard of it and its growing they cant leave us suffering like this, If an animal of any kind was acting like we do when under an attack they would put it to sleep quickly. I am just glad we have who we do at Harvard and know that they wont leave us hanging and the folks that donated that 6million to research of headaches..at least we know Dr.s and scientist are working on getting us the best treatment and finding the cause. thinking I will just start carrying a copy of that colleague letter as a hand out so I can save my breath if they cant understand after reading that..screw'em don't need them. we have no choice but to deal with CH no need to add anger with it. I talk alot dont I Â Â Darrin Texas Cluster

someone correct me if I am wrong, but I remember learning that zomig was okay to use, its the verapamil he should detox from.. the verapamil made my clusters worse in numbers and in severity..I had to detox from it just cause of that,and the ergotomine but then Dr's put me on Lyrica after that while I was here learning about busting and I detoxed that fast...don't think I even took it but 10 to 15 days..then went straight to busting and PF now for the most part..shadows are showing now.. but if I remember correctly zomig was alright, the nasal 5mg one shot nasal spray..if we learn its alright Angel go get that coupon I posted in General category here.. I keep them on hand in case I cant get to the o2 Darrin Texas Cluster

why didn't anyone reply with "where in the @#$^# is the coupon?..lol I feel like a moron for posting that thread and not even leaving the link to the coupon..lol sorry and here it is... http://www.zomig.com/zomig-coupon.aspx   Darrin Texas Cluster

Hey yury66, bust in all you want..that's what we do here..lol welcome to the family of friends always sorry to see of new sufferers but glad you found us your in the right place. yes they are available on line and a few links to the sites are found here, I got mine from http://psychoactiveherbs.com and were all viable so far, 400 for $49 and it was a fast easy process,they knocked them down and I am having some great days now and I am also a chronic sufferer. I hope this helps and feel free to pm any of us or ask in a thread like you did..someone here will see it, no matter where you put it allot of info on the dosing and daily updates on how it's done and works.. check out mine and davids threads here on our journey of PF time using the RC's mine is "My order is in , let the busting begin" davidsj35's is under " And so my experiment begins" both are pretty informative and if you have any questions feel free to ask. hope you find what you need. Â Â Darrin Texas Cluster

that was from my thread, so I posted it here thinking you would see it faster..lol Carole please dont be scared, look I have been chronic for three years my life has been destroyed nothing is the same this beast has beat me down so bad that I was scared to leave the house.. now lets not sit and wait for it to run it's course, learn more about busting, get your feet wet and try it. I would really hate to see you end up the way I did by ending up chronic with out knowing if RC's could have helped prevent it..but I hear way to many stories of how it knocks out cycles..keep the seeds on hand and when they return you will know how to and not have to endure it all over again..you and your daughter can enjoy one another instead of her witnessing it all over again. think about it this way...taken the RC's is no different than being sober. .lol we are all her to support you and we want you in PF time just as much as you want it.. Â Â Darrin Texas Cluster

I couldn't find the thread I left my zomig post on so I will just start another..lol now I have used this and it has saved me some cash..its $35 off I have been lucky that with my insurance my cost is $35 so its been free for me and it can be used once a month for 6 months. hope this helps all those that use the zomig   Darrin Texas Cluster

bet it would be nice to have fame but at the same time I would be worried how word is getting around and who is learning this..I know that most people understand why we do it but I would hate to see anyone get in trouble cause of youngsters chatting about what we do. :-X Maybe I should of asked where all this is happening before expressing my concerns, I know some places it's legal to grow a certain amount.. Â Â Darrin Texas Cluster

I was talking to a neighbor one day and he had a friend over and both were drinking (explain a cluster to a drunk) my neighbor who understands and knows about the RC's asked me how I was doing with my headaches and his buddy popped off you get headaches too?..I told him I get head pain that is called cluster headaches. he says to me "Dude I can help" with that said I had hopes this guy knew something I didn't (like finding clusterbsters) he went on saying how his headaches just kill him (now I am thinking he is a sufferer also) never knew anyone in person that had them and thought for a minute that I have a new friend..turns out he gets sinus headaches and when I explained what a cluster was he was telling me that my pain couldn't be anything like his.. I asked him if he had the Internet at home.."yes" I told him to go research CH's three days later he came to my house and apologize for being an ass that night, that he had no idea what he was talking about and to get in touch if I ever needed anything. I figured a good story like this might lift a few eyebrows..lol I have been fortunate enough that my family did just as much research as I did and has helped me every step of the way...I cant tell you how much I wish that all CH sufferers could have what I do aside the pain..but all the understanding and help from family and friends. when I told friends I am busting and what it was, and that there is no known cause or cure they all understand and say the same thing "you got to do what you got to do to get a decent day and sleep" even had a few wanting to bust with me..lol for those that have no care about them I tend to avoid saying anything to them and just leave them in their own ignorance no sense trying to explain anything to someone that could care less. Darrin

He was my favorite on that show and I hated to see that happen to such a good man. And that was a great "last catch" of a show. my thoughts and prayers for him and his family                 [smiley=engel017.gif]Hats off for Captain Phil Harris [smiley=engel017.gif]   Darrin Texas Cluster

what I have read on your plan of action seems to be on target Carole my first dose I used 10 seeds, I was scared just like you, but I am here to tell you that you have nothing to fear..the worse for me was the emotional and exhaustion I had the day after the first 2 doses but compared to the attacks, its a walk in the park... I now know that 30 or more is the way to do it..never tripped kinda felt like I wanted to talk allot to someone..lol.. so try and have a friend on hand or maybe the mother and daughter night of chit chat..lol Just be prepared for post dose attacks, I at first thought it was making it worse and I made a mistake choosing that route but it gets better and I will stick with the RC's unless they get up to a kip10 again..when that happens I will pull out the big guns that I was fortunate enough to receive from a an anonymous individual that I can also call an angel oh and I just crushed mine in to bits let them soak in 4 ounces of water for 10 to 12 hours and drank the whole mess in 2 swallows adding a little water to get the rest of the slug off the bottom to get it all down.. its wasn't that bad and I have bad gag reflux..lol so it cant be all that bad..lol I wish you the best of luck and hope it works wonders for you. Cant wait to see your posts after the 3rd dose   Darrin Texas Cluster

hello Angel, sorry he suffers like he does, I feel for him but relief is around the corner now that you have the RC's ordered. I have been chronic for three years and was about to lose all hope and then I found Clusterbusters doing research on the clusters and thank my lucky stars I did.. I have done 4 doses of RC's and I cant tell you the difference it has made for me AND my family.. I started out with 10 and wished I did 30 and that may be where he wants to start. the day after my first 2 doses were trying for me, I got all emotional and very exhausted but after the first day the 2nd turned better days and after the 3rd and 4th dose..I will never be with out the R.C's in my fridge, now I will always keep them in stock for sure...I feel much better not getting 10 attacks a day I am now sleeping every night with out the beast as an alarm clock... just make sure you have the o2 on hand when starting it and the non-re-breather is important as well in my opinion cause the mask never really did anything for me I also noticed a big difference when I was taking a big drink of water about every 2 minutes when taking the o2 they seem to go away faster now. its been about 3 weeks and I am just starting to get shadows and might be doseing for them soon. but whats important is that the seeds are ordered and I wish him the same results I had only better   Darrin Texas Cluster

Carole, it's nice to meet you but feel bad for you and your daughter but thank your lucky stars it's not her that has them I have a 13 yo boy and he hates the fact that something he cant see takes his dad to the floor in a fight he is losing but I like to think that with all the children learning about these may bring help in the future in many aspects for sufferers and and their families. I read the whole thread and don't recall seeing anything on keeping the seed in the fridge for storage in a zip lock. not sure if you have seen my thread "My order is in, let the busting begin" but after my first dose I got extremely depressed and was getting 10 attacks in a day, I was miserable, I was emotional and physically exhausted ready to throw in the towel, but after 2nd day of dose I felt like a million bucks and for three days of slight shadows. the 2nd dose for me was about the same as the first but the third seem to really help the most and I stopped after 4th and have pleasant days now, o2 works within minutes have not had one over a kip3 in weeks and being a chronic sufferer that's saying something lol the treatment is easy safe and you have nothing to worry about..you have also gotten the best advice from here and we all look forward to reading your future pain free posts not real sure if I seen anything about the non-re-breather mask or mouthpiece but that's just about as important as having the o2 if you ask me...I tried the mask that Lincare gave me with my o2 and it did nothing for me I ordered the non-re-breather and use the mouth piece and we are talking minutes of the onset pain nothing terrible..I am talking a night and day difference.   Darrin Texas Cluster

I read something in the recent past about it being predominantly in caucasian individuals, mostly men but women as well, just not sure myself cause of all the miss diagnoses that are out there and the Dr.s excepting patients not knowing how to treat them and trying their own thing and I think that's just wrong personally. now as far as the intelligent and good look parts of it being a factor!! :-? maybe I am the exception..lol not real smart, I use to be good looking in my 20's..lol personally I think its one of three things, gene's or a head injury..I have had many and its always made me think that would have to be it...and the third is past shift work..I worked some long hard hours sometimes being clocked in for 3 days at a time..would be lucky to get 4 hours sleep in 24 hours and allot of times not even that. I just hope I am still alive when they find a cause..its been like a Riddle to us all and I would love to know the answer Darrin Texas Cluster

Let me know if you need a roommate david. ;D Darrin Texas Cluster

have not read much on this thread till now and though maybe I could say something, I tapered off everything I was on as far as RX other than the Zomig, I keep it for when I cant get to my O2 but don't use it very often but when I do it seems to help, I did my 4th dose of RC's last Friday and I cant tell you how happy I have been, like David I am use to 10 -12 hits a day and through the night but I have been chronic far to long to be able to stand it like that anymore, and I thank my lucky stars I found CB's.. I had tried many treatments that did nothing but temp relief and then got worse and that's what it sounds like you are going through.. I sure hope you detox and find the method works I wish we all knew exactly how it worked but it seems a little different in all of us, my last dose was 40 seeds and I cant tell you how much better things are. I sure wish you the very best finding PF time. and if anyone is still paying out the @$$ for zomig, I will try and post a web page here real soon for a coupon that's $30.00 off price, mine are free for 8 months. With insurance it costs me $30 and you can use it once a month for 8 months, let me get the info from my wife when I can. Â Â Darrin Texas Cluster

I feel for you and your son clustermom and hope the RC seeds work for him like they did me, no wait.I hope they work better for him!! on the topic of common threads, here is mine.. Â I am 40, 5, 9" 165lbs blond w/ blue eyes...thought I was on a dating site for a second there. I had my nose busted pretty bad in a fight one night was hit by a fist holding a roll of quarters, to bad the guy lost the fight and the quarters, but my nose and cartilage in it was messed up and it has come to mind a few times if that may be a cause, I also crushed my lower fourth "L4" lumbar in early 90's and the nerve pain was sending signals from all over the place like the legs and arms, even found some spots that I can scratch and feel the scratch in another place not far from the origin of the itch, that's also one I thought may have caused it. and in 2007 I was hit by a 17yo drunk driver being chased by 5 police cars, on fathers day no less, she T-boned me at 65mph and I was going 45mph when she hit me I hit my driver window on the effected side after that I have slowly become chronic with it getting worse every month until now But as DD says the hypothalamus seems to be the link and I am starting to think that may be the cause as well. we cant rule out that a past accident is a cause, but I know so many people that have endured head injuries and back injuries and have nothing like this head pain. Darrin

Raquel, welcome to the Busting family, wish you or anyone else didn't have to be, but you have found what I believe to be the best place for anyone who has CH's and as everyone has said the O2 is a must treating with this method, I learned the hard way about the non re breather mask and mouth piece, I had a regular mask and it did nothing even having the 15lpm, but after getting the non re breather and using the mouth piece after I noticed a major difference in aborting them.. the seeds work great but doesn't cure them, seeds and O2 work much much better and will give you a different outlook on things. don't think I started treatment till after about a mouth of research and started the RC's and they have made my days much better, I was getting hit with as many as 10 to 12 in 24 hours now its like 3 at most and easily aborted by O2 8-) I feel like I just want to walk the earth and share this with any and all CH's sufferers. I sure hope you find it to work for you as well as it did for me and others. good luck with the O2 try not to go with out it, and I wish you the best in PF days. Â Â Darrin Texas Cluster

http://psychoactiveherbs.com is where I got mine and all seem to be good and working for me as a chronic sufferer I am finally getting some PF time. wishing you the best in your treatment. Darrin Texas Cluster

I was always told that smoking contributes to the attacks cause of the lack of oxygen, but like I said, I was told this..never read anything that smoking causes or triggers them.. one thing that stands in the back of my mind is what I did read about "shift work" I worked for 2 service companies that I was on call 24/7 for 20 years..one vacation in all those years, ther were times when I was awake and working for 3 days straight back when oil was booming. but it was not out of the norm for me to be up 24 to 48 hours on end quit often.. I was a driver so I was on the clock more than off. that's the only thing I read that keeps me wondering if it may have been my cause of getting this beast.   Darrin Texas Cluster

Thank you Bob for the response, I had 30 soaking for about 20 minutes I removed 15 give or take, I am 40 with chronic so I'll meet it half way, next dose decide more or not. will report back in the morning 8-)  here we go   Darrin Texas Cluster