TheVerbalArchitect Posted January 13, 2011 Share Posted January 13, 2011 Hi Everyone! I am am new to CB ,not sure where to start,im a 26 year old chronic sufferer,on 720 mgs of verap a day and taking suma shots,nuttin is working,im interested in trying the rc seeds but i have no idea where to begin,how are they used? how often? i get no remissions. Please Help Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted January 13, 2011 Share Posted January 13, 2011 Welcome to the community....sorry you have the need to be here though!! If you'll look down at the bottom right of the page you'll see "forum jump".....open the dropdown and select "clusterbuster files"....you'll find several threads there dealing with LSA using both Rivea Corymbosa and Hawaiian Baby Woodrose seeds.... There will be others along soon with personal experience regarding these "alts" Good Luck and Welcome Home!! Dallas Denny Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted January 13, 2011 Share Posted January 13, 2011 Welcome to your new family Architecht! Sorry you have to be here, but glad you found us. Many say that this the best and worst place to be all at the same time. Just go to the home page, click on clusterbuster files, and select LSA. There you will find much information on busting with seeds. There is a lot of good information in the "files" as well. Read as much as you can. Ask questions when you need to. Most importantly, in order to give the seeds the best chance, you will need to detox off all your meds. Don't do it cold turkey, taper them down. This sounds scary, but your meds will block the abilities of the seeds to do their thing. Also, most CH sufferers, use oxygen to abort their headaches quite successfully. What you will find with Suma is that the more you use it, the more headaches you will get. A "rebound" effect. If you click on the left of your screen on the menu bar, go to the oxygen page. It has lots of information. Your doctor, if he is worth his salt, will be aware of this treatment, and should be happy to write you a script for the o2. If you don't have med insurance, many here use welders o2. It is imperative when you use o2 to abort your headaches, that you have a non-rebreather mask so that you are getting 100% o2 at a high rate. The ones that go in your nose, or the conventional mask will not get you the relief you so desperately need. My son is 19 and has been chronic, which means he has multiple clusters every single day with no breaks, for the last 7 years. My heart goes out to you. He is much improved from where he was when being treated with "conventional" medicine. So you are in the right place, and you are asking questions. I believe you will find the answers here, but there is a LOT to read and learn. Don't worry, it WILL get better! HUGS Quote Link to comment Share on other sites More sharing options...
TheVerbalArchitect Posted January 13, 2011 Author Share Posted January 13, 2011 Awww thanks so much guys,i have already started my detox and should be gettin my seeds soon,my doc lately has been giving me a hard time ,he wants to continue the high dosage of verap first before he will meet up with me again to give me O2,i told them i wasnt comfortable taking so much verap but they said i wasnt giving it time,ive been on it for a month and a half,no change,bs i hate dealing with nurses/doctors. Thanks so much guys,hugs hugs Quote Link to comment Share on other sites More sharing options...
TheVerbalArchitect Posted January 13, 2011 Author Share Posted January 13, 2011 Another Q, if im uncomfortable taking 720 mgs of verap a day,should i tell my doc? Or should i just go along with his plan? Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 13, 2011 Share Posted January 13, 2011 Of course, your doc might have some good reason to keep the O2 away from you, so I'm not offering medical advice. But as you might already have read, you can set up an O2 system on your own by getting O2 canisters from a welding supply place and getting a mask and regulator from any of a number of sources. I should say that I'm not a CH sufferer myself, but the father of one, so my advice should be taken more lightly than what you get from others, but it's hard for me to imagine detoxing without O2 (although my daughter went six years taking virtually nothing, not even O2, for her CH and somehow, barely, survived -- so I guess it can be done). You know all about using RedBull/caffeine-taurine drinks, I imagine; and maybe you've read the thread about licorice root (titled "A potential new option") here at the General Board. Read, read, read, and ask, ask, ask -- the people here are, as someone recently said, awesome. Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted January 13, 2011 Share Posted January 13, 2011 My two cents . . . .doctors can only recommend what they can recommend. After going that route for 4 years or so, taking every they could think of (sometimes up to 30 pills per day--one to counteract the side effects of another), and 6!!!! hospitalizations, we made the decision on our own to try something else. I realize you haven't been down that harrowing road yet, but if we had it to do all over again, we would've started here! Sometimes you have to take ownership and control of your own destiny. YOUR PAIN, YOUR BODY, YOUR CHOICE!!! Quote Link to comment Share on other sites More sharing options...
TheVerbalArchitect Posted January 13, 2011 Author Share Posted January 13, 2011 I also went years not taking anything,doctors didnt figure it out until a year ago,i have had them for about 5 years now.Thanks so much for the help,im gon grab some red bulls today. One Love Quote Link to comment Share on other sites More sharing options...
tingeling Posted January 13, 2011 Share Posted January 13, 2011 Hi Welcome when i tried to get O2 first time, neuro didn`t answer me. I tried several times, everyone i asked just "talked it away". I have been told it`s because of the deals with pharmacy companies, they offer meds first. don`t know if it+s true, but... What is very important in my opinion, is how you eat, sleep and live. Eat non refined food, drink lots of water, exercise make a huge difference. Keep blood sugar level stable, stay away from sweets and fast carbs. Sleep in a more sitting postion and get up the same time everyday, weekends as well. Things like that improve the situation more than you can imagine. I know it`s hard in the beginning, but it`s worth the effort. Keep the balance right Just ask, if you have questions. Pain Free Wishes from me Tingeling Quote Link to comment Share on other sites More sharing options...
Bonkers Posted January 13, 2011 Share Posted January 13, 2011 Hi VA, It's good to have you here. Pretty much everyone who's been here for awhile is a lot better off than they were b4 finding this site. Some of the things you'll find mentioned here may seem a little off the wall - some are even illegal - but everything discussed here has been found helpful for some folk's CHs. The advise to read as much as you can and ask questions re: anything you don't understand is standard advise for anyone newly arrived and is very important. We want to help but you need to educate yourself so that we don't need to spend too much time answering basic questions. Most folks here immediately find a way to get on high volume oxygen along with energy drinks containing caffeine/taurine. These need to be available b4 detoxing and attempting to bust. RC seeds are both legal and effective. For many, that's all they need. That's what you need to do first. Learn everything you can about those things first. You don't mention your doctor's speciality. If you intend to use a dr's help in treating yourself, it's important that he be a headache specialist. Most neurologists, GPs and pain specialists don't know squat about CHs. You'll do fine. I mean... you're an architect for crys sake! Ron Quote Link to comment Share on other sites More sharing options...
TheVerbalArchitect Posted January 13, 2011 Author Share Posted January 13, 2011 Thanks Ron for all the input,i have been reading all day,my seeds are on the way,i have a neurologist,but he keeps insisting i follow along taking 720 mgs of verap,today i told them i wasnt comfortable with that dosage,then the nurse goes,how can you know 720mgs wont work if you dont try it long enough.Ive been doing 720 for 2 days and already hate it,clusters are worse than ever.Today so far though no suma shots,just shadows all day today,been doing energy drinks/water One Love The V.A. Quote Link to comment Share on other sites More sharing options...
Brew Posted January 14, 2011 Share Posted January 14, 2011 Not that I'm advocating the use of verapamil, but any time you make a change in dosage, it can take up to two weeks to determine whether or not it is at a therapeutic level for you. Your doctor's nurse is not nuts. Get the oxygen on your own if your doc won't prescribe it. I've told you this already, and won't say it again. Quote Link to comment Share on other sites More sharing options...
TheVerbalArchitect Posted January 14, 2011 Author Share Posted January 14, 2011 I am working on gettin the O2 i currently make no income,i have to wait till i have money. And you didnt have to say it again, i got it the first time. One The V.A. Quote Link to comment Share on other sites More sharing options...
Brew Posted January 14, 2011 Share Posted January 14, 2011 I merely meant that I wouldn't insult you by repeating myself. That's all. Quote Link to comment Share on other sites More sharing options...
TheVerbalArchitect Posted January 14, 2011 Author Share Posted January 14, 2011 Its all good my fren, Boo Ya Ka! Quote Link to comment Share on other sites More sharing options...
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