FunGuy

Dan. that has to be the worst example of journalism I've ever heard of. Unbelievable. Please, somebody have that taped or find me a link to is so we can play that at the Vegas conference. Then we'll call the Doc that said it. :-)

There are several studies that support the idea this works for some. Google testosterone cluster headache. For one: http://www.ncbi.nlm.nih.gov/pubmed/16732838 There is also a lengthy thread on ch.com with a good discussion. All 18 pages: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1228226896 I applaud this new study, the researcher is funding this himself. I too wish those in other areas could participate. Hopefully those clusterheads in Florida will contact the Doc and get involved.

I hope many of the people from this board can participate. Good luck!! FG

The survey has now been closed and we are beginning to sift through the data and compiling the results. There is a ton of info there, it's going to be slow to process. Sorry. To everyone that took the survey, a huge thank you. :-) FG

bump last chance, closing the survey soon. FG

Alex: It's really hard to predict but the amount of cortical steroid is small in QVAR compared to the oral doses some take for CH treatment. I can't predict any 'danger' as others have taken seeds while on cortisone or prednisone. Maybe others have a comment or advice? I'd wait until you are done with the QVAR and then dose without waiting another 5-days of detox. Worst case that dose is ineffective. Make sense? Hope so. Good luck

Alex: First, my hopes that the surgery went well. QVAR contains a cortical-steroid designed to reduce airway inflammation (and that helps open the airways) usually in asthma conditions. It is fast acting yet less systemic than oral cortical steroids. Info here: http://www.rxlist.com/qvar-drug-center.htm You'll certainly want to take the QVAR as prescribed. This is your throat we are talking about and you just has surgery. Can you hold off busting for the 8-days? Hopefully your last does was recently and at worse case you are ovedue by 3-days and have a supple of oxygen on hand.

I'm with Ricardo on this one, somewhere there is a small child crying over his/her lost cat. Not Nice.  :-( A couple of points: 1) 'the people in control' did NOT force your post(s) into the darkness. The are still there, right where you left them, but the threads are locked. Your user name then was "the_mushroom" and neither the elite, illuminati, freemasons deleted you or your posts. (btw, I can post the user name as it is still on the various boards for all to see). 2) we are not the only ones to be honored with this message, it's also posted over on the shroomery, it's gone to 6 pages there and counting http://www.shroomery.org/forums/showflat.php/Number/16434904/fpart/1/vc/1 (edit: I missed 1eye's post with this link. sorry.) This continues unless stupidity prevails, promises of relief and false hope start being offered to people in pain. Cross that line Blake, you'll be set to "on hold" status where you can once again see but not post. Frankly, I should do that to your account now based on the last fiasco. But for now I won't I'm amused by this. And besides, I want to know when you return the cat. I'm still feeling really sad for the kid missing their cat.

My supplier recommended plain soap and water for the mask itself. I clean mine once a week when in cycle. They did not recommend any type of cleaner, don't want even a hint remaining and be breathing that in. (too funny, then many of us go have a smoke after using the oxygen abort an attack.  lol) Normally there should me none of your breath, which is high in moisture content and loaded with germs, leaking back into the reservoir bag or hoses as the one-way valves should prevent that. So if you are going to clean those parts make sure they dry fully or any moisture remaining could promote bacterial growth. Should you do find any growth of any sort on any of the surfaces or connections, replace the parts immediately. Especially black or green stuff. Yuck. Frequent inspection of all the components is strongly recommended. BTW, do not clean the regulator yourself. Other than the surfaces for dust, any cleaning requires a professional. But we all knew that. :-)

Whooligun No doubt you are overwhelmed right now. Our thoughts are with you. Everyone with CH or CH like symptoms should have a CT or MRI done. Everyone. Also, with any significant change in HA pattern, another scan should be considered. The best fact sheet I can find is here: http://www.ninds.nih.gov/disorders/avms/avms.htm With links to many options and ideas. Your doc is your best friend right now. If there is a bright side to this, they have found it and can deal with it. Please keep us posted, when you are up to it. PM if you want, we can talk. Take care. All the best FG

Ever try? no, but thanks, ;-) A lot of athletes use them as a pre-game stimulant. Seen them do it, I can't imagine doing it myself. But then again, I couldn't imagine putting hot sauce under my tongue. But that didn't work too well. lol I dunno. Talk about an energy boost!

Yep, always get clogged nasal passage on the CH side. My CH switch sides from cycle to cycle, but the congestion also follows the pain side. In fact, when in the midst of an attack one sign I know the pain is abating is when the nasal passage on that side starts to clear. That almost always means the attack is just about over.

Yep, still here. Taken to PM FG

Seriously, looks like it couldn't hurt as it does appear to be very safe.

Maca: http://altmedicine.about.com/od/herbsupplementguide/a/maca.htm http://en.wikipedia.org/wiki/Lepidium_meyenii#Uses_and_preparation LOL, what are those Finns up to now? :-) Benefits of Maca include: Increases libido and improves sexual function Promotes hormonal balance for men and women Relieves symptoms of menopause Increases resistance to disease and strengthens immunity Increases energy, endurance, and stamina Reduces stress and improves sleep quality Seriously, looks like it couldn't hurt as it does appear to be very safe.

I still do for every cycle. Where did I put the link to the CB diary? Hmmm The summary page is great.

Welcome Ken. Spores, try Ralphsters. http://www.ralphstersspores.com/ Discussion here:Â Â Â http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1335882755 About mushrooms here:Â http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128444 About growing, here:Â http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1330748491 There are lots of ways to grow, hopefully some of our experts will be along shortly.

If a concentrator at 10lpm and about 90 to 94% O2 is working for you then that is wonderful. For me it's 15+lpm and the oxygen is at 99%. But its what works for you that matters. I could find nothing in the literature or online message boards about oxygen therapy causing dry eyes and partial loss of vision. I urge you to discuss the vision loss with a Doc, you said it took a couple of days to clear up and that does concern me. You asked about the differences between medical grade oxygen and welding oxygen. There isn't any. From the article you noted: Many moons ago, gas supply vendors typically maintained two separate storage facilities for oxygen: " welding or industrial or technical" (a non-USP, or illegal to sell for human consumption label) variety and gas intended for human use in respirators or medical procedures (a USP label). Since most gas supply vendors have decided that it is simply not cost-effective to store separate grades of medical gases, almost all oxygen sold in the US is a USP grade (meets USP requirements for human consumption). However, there are distinct differences in how the cylinders are filled. (see below). So, the debate as to whether to use a non-USP welding gas or a USP medical grade oxygen for diving is mostly irrelevant since most vendors are now filling all cylinders with USP gas. Forget about the other grades and trace elements, that is all specialized stuff. Regarding medical and welding oxygen, the only difference is not in the quality of the oxygen but the chain of custody of the tanks. If you bring an oxygen tank in to get refilled, they will give you another refilled oxygen tank of the same category (i.e. welding, aviators or medical) that you gave them but not likely the exact one you brought in. Here's the issue: If a welding tank is used, you don't know where it's been and if it has been left open, contaminants may have gotten in at some work site that used it previously. I've said if before, no one should have to resort to using welding oxygen to treat their cluster headache. Sad that they do.  It should not be that way.

Damn, a year long cycle. I wish you luck with the aspartame and MSG. Both are hidden in so many foods it is difficult to eliminate.  The reports I have seen suggest neither has much of a role to play in CH, but then again it isn't likely to hurt any. Good luck, let us know how it goes. My bad, I meant to write you about the logos. For now we are using the 'pre-packaged' microscope that came with the template for the web site. We have not reached any decision on a new logo for CB, we are still using the old microscope. Please accept my apology for not writing earlier and letting you know. FG

Over the next little while we will be moving the admin emails away from the busterboard@hotmail.com to the web site email: info@clusterbusters.com If you have the hotmail address saved, please update your records. Thanks

The response to the ClusterBuster online medication survey has been remarkable. To those that have already completed the survey, a huge thank you. For those that have not yet completed the survey, we ask that you please make the time to do so. The information gathered from the survey will be complied into a journal article. Your input is needed to make this a comprehensive and complete review of the commonly prescribed traditional medicines (including abortive and preventative medications), various surgical procedures non-traditional medications to alleviate cluster headache. (*note - the survey will take 25 - 40 minutes to complete and must be completed in one sitting) We can make a difference.  Help to make that possible. Survey link is: http://survey.constantcontact.com/survey/a07e5lc5y7agyhhgd2b/start Thank you ClusterBusters Survey Team

Sorry for late reply, I've been away. Once you registered the program allows you to print your ticket. We'll have all the badges at the registration desk when you check in. I've modified the registration form to include the screen name and your real name. LOL. but bring the fish anyway. :-)

thanks It is also posted here by Bob: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1335964966 Also over on ch.com I've also sent out a ton of emails and a reminder will go out again shortly. If you've not taken the survey please do so. Remember, maybe 40 minutes so if you are going to start it, please finish it :-) Edit: July 11, 2012 - survey now closed.

The registration page is now open. Updates to the speaker lists have been made. It's all in the Advocacy, Events and Conferences Section. Are you planning on being there??

The Registration pages for the 2012 Clusterbuster Cluster Headache Conference is now open. This event runs on September 21 & 22 in Las Vegas at the Rio Hotel and Casino. This link takes you to the Registration page, click here:  Conference Registration Full attendee fee is only $140, companions are $110. We encourage everyone to register early. You can pay now with PayPal or use your credit card or debit card without having a PayPal account. It's easy, the instructions are on the page. The Rio Hotel Link for the incredible rate of $85 per night is also on the Registration page or click here: '> Rio Hotel and Casino The links to the Agenda and Syllabus will be updated shortly. Scheduled speakers include: For further information or any questions please contact info(at)clusterbusters.com