rascleo Posted March 29, 2011 Share Posted March 29, 2011 My Cluster Headache situation has been going on for nearly 3 years. I have Chronic C/H and have not yet had a break in the cycle. My situation is so serious I've had to go out on unpaid medical leave from my school district and univ. I get 7 - 8 H/A/day. I have been on a plethora of medications, done the DHE treatment, an Occipital Block and a Gasserian Ganglion block all to no avail. I'm in the middle of a Botox trial, which thus far has had no positive affect. I use oxygen therapy at home, (15L/minute for 20 minutes), which will come close to aborting a H/A in about 30 minutes. My quality of life is for shit as I can no longer participate in life's normal day to day responsibilities or pleasures. I mostly stay home to be able to access meds and oxygen. I'm not at the give up stage yet, I have phenomenal doctors working very hard to get me some relief. I need sleep and hope for a time of remission, this type of excruciating, debilitating pain is taking its toll on my mental as well as physical status. Any suggestions? I am open to all. Thank you for any advice you may be able to give! Richard in San Diego. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 29, 2011 Share Posted March 29, 2011 Richard, First off, welcome to our website but sorry you are suffering. I was CcH for 7 years. I too went through all the surgeries and meds. My wonderful wife and supporter said STOP when my last two options according to our Neuros were deep brain stimulation and decompression surgery. I'm not sure who said it but "clusters will not be cured with a knife". I began taking mushrooms after everything else failed. I had to do my homework and learned about the mushroom therapy being used for hundreds, if not thousands of years. I learned about the seratonin storm that our brains produce and the fact that the seratonin receptors get blocked with the psilocybin molecule. It's not hype or BS. It was my last option. I was indeed suicidal. I have lived a virtually pain free life since my third dose. I now have to "take my medicine" about every two months in order to keep the attacks at bay. The 6 to 8 hour trip is an investment that may well change (or save) your life. You mentioned o2. Do you use a nonrebreather mask? The mushrooms and oxygen have literally saved my life. I can go and do as I used to. I no longer live in terror. We will help you in any way we can. You are obviously well educated. I am an expert on clusters. We all are. Read, read,read. Send me a PM if you want to. You can call on me anytime. 325-518-9046. Since I found the secret I have made it my mission to pay it forward for the folks that saved me. Dan Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted March 29, 2011 Share Posted March 29, 2011 Richard, Sorry to hear you're having a bad go of it. I spent years of missdiagnosis and more years taking dr perscriptions that either didn't work or made things worse. I'm not chronic, but myself and many others can attest to psychadelics ending our cycles and providing a MUCH better quality of life. Read, Read, Read: There is a wealth of information on this site regarding the main methods of cycle termination on LSD, LSA and Shrooms. Good luck and ask as many questions as you need. Someone is always here willing to assist another with CH. Jeff Quote Link to comment Share on other sites More sharing options...
rascleo Posted March 29, 2011 Author Share Posted March 29, 2011 Thank you so much, Jeff for your reply. I do read and research, as I have learned I need to be my own advocate. I fully intend on continuing my search for some relief, as life as I am living it, isn't worth living. Richard Quote Link to comment Share on other sites More sharing options...
CHfather Posted March 29, 2011 Share Posted March 29, 2011 Having guys like Dan and Jeff -- and so many others at this site -- on your side is like going to the Mayo Clinic, rascleo. Great advice, great wisdom, genuine compassion -- only better, because they'll stay with you until your situation improves. I would suggest that you order some RC (rivea corymbosa) seeds right away. It's completely legal to buy them and have them in your home, and they're not expensive. Then you'd have them if you decide to "detox" and try them. Here are some sources: http://www.ethnobotanicals.com http://www.iamshaman.com www.psychoactiveherbs.com www.shamansgarden.com Also, if you decide to move up to a regulator with a higher flow rate, maybe along with an O2ptimask, both of which many people swear by, you can get those at these places. 25 lpm regulator, O2ptimask, demand valve: http://www.lifegas.com/gas_devices_and_therapies/special_oxygen_needs.asp 25 lpm regulator: http://www.madamedical.com/merchant.mv?Screen=PROD&Store_Code=MM&Product_Code=R1... Regular and higher-flow regulators: http://www.floteco2.com/htm/Products/Regulator_Page_&_Images/B-Regulators.htm. A Clusterbusters member writes, "They have ones that go way high (I think mine goes to 60 LPM), and last time I checked they will overnight ship. I had to call them to figure out what would be the best of their regulators to order for my O2 tanks though -- it wasn't clear to me online." Quote Link to comment Share on other sites More sharing options...
clustermom13 Posted March 29, 2011 Share Posted March 29, 2011 I have phenomenal doctors working very hard to get me some relief I am sure they are, but the one thing that really works, they cannot prescribe. When you have had enough of running around in circles and jumping through their hoops, like all of us have, consider this treatment. It can change your life. It is hard to imagine right now, but it will. Why prolong the agony? I won't bore you with the story you have already lived, but I am the advocate and "treater" for my 19 year old son who has been chronic for almost 7 years now. There is no one here who doesn't understand completely this place where you are right now. We all want to help you out of it, as quickly as possible. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted March 29, 2011 Share Posted March 29, 2011 Hi Richard, Ah yes... a fellow San Diegan. How lucky we are. Seems odd that anyone in S.D., given the incredible weather we have - like today, fur instance - would get CH. Well, my son Michael (he's 26) gets 'em too. He's also chronic. The oxygen doesn't work at all for him. He spent several years in bed as one med after another worked for a while and then failed. We found this site about a year and a half ago after reading an article in the journal "Neurology" describing the effectiveness of psychedelics in treating CH. We also had reached the end of the line. He had had CH since he was 12 and became chronic after an MVA when he was 21. It was the first part of '09 when I made a pact with him that I would help him end it all if we hadn't found some relief by the first of the following year. Sometime shortly after we made that pact, we found and were able to try a half-dose of LSD. Some 6 hours after taking the paper, he came running up the stairs screaming that his constant companion of the past several years had gone - and it stayed "gone" for 5 full days. We subsequently found that Psilocybe mushrooms worked about as well and were easy to grow. The use of these substances in fighting CH is the primary basis of this website. It's still very new and we're all still experimenting. Nothing has as yet been committed to stone. After using these drugs repeatedly over the last year or so, they seemed to lose their effectiveness for Michael. We took a break for about 3 weeks and now they're working again (Yeah!, Yeah!). They seem to work for about 80% of the folks that try them. If you found your way here because you too are at the end of your rope, you're joining what has come to be a pretty good sized crowd. The major psychedelics like LSD and Psilocybe mushrooms are illegal and for that reason alone many folks are unwilling to try them. RC and HBWR seeds, while not nearly as potent, are still legal and work for many. Our leader and this site's founder, Bob Wold, is the speaker on a video that will give you an introduction to what we're doing here: There's a wealth of information that you might familiarize yourself with in the ClusterBuster Files. If I might suggest a place to start, Dallas Denny's "*BUSTING INSTRUCTIONS* and info for newcomers" (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051922) would be it. Also, unless you're convinced that your understanding of oxygen therapy and the set-up you've put together to deliver it are complete, correct and still ineffective, please also read CHfather's "My Oxygen Page" (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790). Welcome and good luck. Ron Quote Link to comment Share on other sites More sharing options...
kaboom Posted March 30, 2011 Share Posted March 30, 2011 Welcome Richard! The CH - support you will find here is nothing short of amazing. I've had CH's for close to 20 years - the last 8 chronic. Out of hope and out of options, last summer I desperately resorted to psychedelics. My only regret is that I didn't try them sooner. I still have CH's, but doing a "treatment" a few times a month has drastically decreased their intensity and frequency - to the point where I'm now able to work full time and enjoy life again. I even have some PF days! We're here to help - let us know if you have an questions. Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 30, 2011 Share Posted March 30, 2011 I think I love you Kaboom :o :o :o Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 30, 2011 Share Posted March 30, 2011 ...uhhh was that off topic? Quote Link to comment Share on other sites More sharing options...
kaboom Posted March 30, 2011 Share Posted March 30, 2011 You must deny your feelings, Dan... Ron would be heartbroken. Quote Link to comment Share on other sites More sharing options...
tingeling Posted March 30, 2011 Share Posted March 30, 2011 Hi and welcome Richard I see you got good help from our crazy crew here ;D Just want to ask if you know what your triggers are? If you eat and sleep right, this helps your situation more than you might think. Just ask what you want. My best wishes to you Tingeling Quote Link to comment Share on other sites More sharing options...
Hipshot Posted March 30, 2011 Share Posted March 30, 2011 Hey ting, I've been missing you. I hope you are well. ....I can't help mylelf Kaboom. I feel torn between love for you and my lust for Ron ;D Quote Link to comment Share on other sites More sharing options...
Bonkers Posted March 30, 2011 Share Posted March 30, 2011 I know it's tough (didn't want to say "hard"), Dan, but you're just gonna have to be strong and find a way to forget about me and all the crappity smacking we've been doing. Quote Link to comment Share on other sites More sharing options...
tingeling Posted March 31, 2011 Share Posted March 31, 2011 Thank you Dan, i`m well Quote Link to comment Share on other sites More sharing options...
Brew Posted March 31, 2011 Share Posted March 31, 2011 rascleo - Would you mind providing a list of what medications and dosages you've tried for CH? Perhaps if we know where you've been, we can help you with where you're going. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted April 1, 2011 Share Posted April 1, 2011 You've been given a lot of very good advise, Richard, both on this site and the other. What do you plan to do next? Quote Link to comment Share on other sites More sharing options...
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