CHfather

“If you enjoy a nice ice cream headache from time to time, you would love cluster headaches—same basic thing, except way more intense, fifty times longer, and much more frequent.” Some thoughts, for whatever they might be worth. I try to mention cluster headaches to practically everyone I meet. Partly, that’s just to try to spread awareness, but also, I figure you never know . . . maybe someone will have something or know something that we can use. In hundreds of conversations, I’d say these are the four themes that capture people’s attention most: 1. Medical experts call them “probably the worst pain that humans experience” [Goadsby said this; others have said close enough]; 2. They can ruin lives; 3. The suicide rate among people with cluster headaches is 20 times the national rate; 4. Psychedelic drugs are the most effective way of treating them. I have never found a way of simply describing the pain itself so that people really get it. But “worst pain that humans experience” gets sufficient attention, and sometimes I have a chance to go on to say that medical professionals have compared it to having a limb amputated without anesthetic, and that women with CH say that the pain of childbirth is nothing compared to CH. It seems like maybe we need a distinction here between “branding” CH and branding ClusterBusters. Lots of medical conditions have been very cleverly rebranded. Those of us who are old enough will remember “bad breath” getting rebranded by Listerine as “halitosis.” Heartburn has been rebranded as GERD; impotence has been rebranded as erectile dysfunction. But of course this is just giving new names to conditions that people already recognize (so that products can be more easily sold to treat those conditions), which is not the case with CH. As has been said so often, including in this thread, it would be nice to rebrand/rename CH and get rid of the “headaches” part, since that gives such an erroneous first impression. But in a sense, that was done with the “suicide headaches” title, even though the word “headaches” is retained. As I mentioned above, the “suicide” component, at least in my experience, gets people’s attention; they can begin to imagine how bad pain the must be—not just a “headache.” Puts it in a different category than the migraines people so often bring up when you mention CH. I guess maybe the nice thing about an image is that you might be able to do both—“brand” CH and also talk about CB (as I suggested in my earlier post). If I had to use words alone, my inclination would be the Goadsby quote in some form. It’s not clever, but I guess I don’t want people to have to work to understand what’s being said. As for branding CB, my guess—completely a guess—is that the branding has to be much broader than the use of “natural” treatments. The description at the website and in other documents is “dedicated to finding relief from cluster headache through research, education, advocacy, and support.”

As I remember it, Brew's wife has done some great CH-related artwork, and I think there are others, too.

Wonderful!  :) :) :) :) ;D ;D ;D ;D ;D :o :o :) :)

Welcome, Emil, and thank you for taking the time to share this. Yes, there have been quite a few threads on this topic over the years, but it's still good to have a reminder. At the conference, there was a discussion in which people described several different ways of reducing the amount per injection. As I remember it, for example, someone mentioned getting it in vials and not in a preloaded syringe, so they could just measure out their own doses each time (using their own syringes). I think a lot of people feel they can get by with three doses per preloaded 6mg syringe (using 2 mg each time). Here's one file about that from our "ClusterBuster Files" area: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 Pain-free wishes to you, and thank you for your thoughtfulness in posting this.

I just wonder whether some of the amazing imagery that's been created might communicate even better than words. Some amazing tattoos, some amazing art for the auctions. (There's the Munsch painting, which is what started me thinking in this direction.) Just picking one image pretty much at random as an example, with a possible very preliminary caption. Sorry the image is so big. I don't know how to make it smaller. Cluster headaches. This is what they're like. We're trying to put an end to them.

if he does do that -- even though it almost certainly won't help his CH -- be very careful about what anesthetic is used. many people get CH attacks from dental anesthetics. i always forget what the bad ones are, but if no one shows up to clarify this, i will look it up. (or you might check with dr. kudrow's office.) my daughter's CH become at least a notch more severe, permanently, after her wisdom teeth were removed, using the wrong anesthetic.

When my neck acts up or when I'm doing something that's likely to cause it to act up, I wear one of those soft cervical collars you can buy at a pharmacy. Helps me.

Does that mean your insurance wouldn't cover it, or that you'd have to pay him in full and then submit it to your insurance company on your own?

If that doesn't work well for you (the waits can sometimes be looong), you can find a list of doctors by area who are recommended by people with CH here, along with other information about locating a doc: http://clusterbusters.com/?page_id=455

overit, This is not to say that your clenching might not be causing problems, but almost 50% of people with CH get pain in their teeth during an attack, and 37-45% have jaw pain (the trigeminal nerve goes to those places). See page 5 here: http://www.docstoc.com/docs/102870832/CLUSTER-HEADACHE-IN-THE-UNITED-STATES-DEMOGRAPHICS-CLINICAL-CHARACTERISTICS-TRIGGERS-AND-PERSONAL-BURDEN Tooth removal and other dental surgeries and procedures, sinus surgeries, and various TMJ treatments have been undertaken by a lot of folks with CH to try to deal with the pain -- in most cases, those things have no positive effects. How are you doing on getting oxygen?

www.tranceplants.net is pretty popular here. I see that ktbotanicals is also closed (and iamsham still is not carrying seeds). www.psychoactiveherbs.com seems to have them. If you order from tranceplants, note that they are in Canada, and shipping can take longer than you'd expect -- even a couple of weeks. If you're in a hurry, you might consider their overnight shipping. (I don't think that their in-between option, "international air" or something like that, saves much time.) I don't know where psychoactiveherbs is shipping from.

 Dan (and others), I can tell you how I post photos. I might be doing it in a very clunky way, and I'm sure there are many variations on this, but this works. 1. Join www.photobucket.com. (Free) 2. Upload your photo (or image) to photobucket. (In this case, Dan, you will have to email it to yourself first from the phone and save it on your computer, or get it from the phone to the computer in some other way (synching)). 3. After it's uploaded, double-click on the photo in your photobucket "library." 4. To the right of the photo, you'll see a heading that says "Links to share this photo." Go to the fourth item, IMG. Left click once in the box after IMG. A yellow notice will show up that says "copied." 5. In the message space here at the CH board, either right-click and hit "Paste," or hold down the CTRL key as you hit the letter "v" Your image will appear. (It won't appear in the area where you compose your message, but it will show up in "Preview" and when you actually post it.    . . . . I hope.

The Jeebs-O-Meter records:

When I played football in college, I was a very mediocre defensive end, but there was a fantastically good linebacker on my side who always seemed to tackle the many runners that I missed. That's how it feels here -- always somebody to do a great job with the stuff I let slip by. Thanks!

I'm very glad your cycle seems to be ending, Austin. That's the important thing for now. I don't know whether you intend to return the tank and the concentrator to Lincare or hold on to them, but I think that if you educate them they will understand that a concentrator is nearly useless to you. (We went through the same thing with a Lincare office -- they sent a concentrator and said it was the best they could do, but after I insisted they found a nice big tank and a 15 lpm regulator.) You're wasting $ big time on the concentrator -- heck, you could buy a big tank from a welding supply place, and get your own regulator and mask, for far, far less than you're paying them over time. If you want to be persistent with Lincare, I'd start by sending them this article about high-flow O2 for CH: '>http://jama.jamanetwork.com/article.aspx?articleid=185035 You might want to ask to talk to the respiratory therapist at Lincare; you'd probably get a more empathetic ear there. Also, if it's taking 15-20 minutes to abort, maybe you'll find some useful tips at the CB Oxygen Page that is underneath the MENU tab on the left side of the page. Most people find, for example, that the O2ptimask that's discussed there cuts their abort time significantly. Anyway, here are PF wishes to you!

Austin, what do you do with the concentrator? Most people have very little success with them as a primary O2 source, and as I read about this one, it seems like it only produces 5lpm. Glad something's working for you, but if this plus the small tank is your whole setup, I think most everyone here would suggest that you talk to Lincare about getting rid of the concentrator and getting a big ("M") tank instead. Am I missing something?

Infinite number of :)s here.

Hoping for the best for you, Whooli.

jms, I don't want to push unpleasantly about this, but just want to be sure you've looked at the oxygen page (under the MENU tab on the left) and you're sure you're doing all you can to make oxygen effective. And I guess we don't know whether you son has tried busting, which has been the answer for many people after all the meds they tried had come up short. Beyond that, there was considerable discussion at the conference about intranasal ketamine as something resembling a last resort for some people. There's some discussion of it in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1374121712/3#3 One won't get that in an ER (maybe one could get some form of ketamine, but I don't know whether that's true or even whether it's advisable). All I can tell you about intranasal ketamine is what I heard at the conference. If you're interested, I'm sure the conversation can be continued. You'll see a post in that thread from the very wonderful Boston Headache Doctor. He has prescribed ket for some people and, as I understand it, helped others get it through their own doctors. Maybe his advice would be helpful to you.

b.g., the published results are here: http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCwQFjAA&url=http%3A%2F%2Fwww.clusterheadaches.com%2Fcb%2Fyabbfiles%2FAttachments%2FCephalgia_article_on_Bromo-LSD.PDF&ei=Ti1GUtunCJLI2wWh4IFg&usg=AFQjCNEQA_GTFiQZknJ_DNK431-EwTN5og&sig2=UW6P9QdNbvz8O1Tvx5gOmw&bvm=bv.53217764,d.b2I  You'll see that four of the subjects had chronic CH and one was episodic. All I know is what I read here, and what I remember from Dr. Halpern's talks. Happy to discuss it more; not sure what to say that you can't see for yourself here. I do remember (and you probably do, too) Dr. Halpern suggesting that it might be extremely difficult to find a German doctor who would actually prescribe BOL. I wondered then whether if there were a group of US patients interested in finding such a doctor they might be able to find someone who would scout around in Germany on their behalf. No idea how any of that might work -- just wondering.

Funny, I was wondering yesterday whether when you dropped those meds you'd get some PF time. It happens so often. Not always, maybe not even most of the time, but often.

I'm just passing on what the others here have taught me. Thankful every day for all the folks who make the time to share their knowledge and support. (Since you like the mask now, this is probably unimportant, and you probably know it anyway, but the O2ptimask does come with a breathing tube attachment, too.)

Just keep in mind that many people see no major change from the first dose or two (or even three or more). In fact, it's not uncommon for people to experience "post-dose hits," or "slapbacks," in which attacks after dosing are more severe than usual, and/or at unusual times. So it's good to at least have that O2 in place for the days between dosing.

I think you might be able to get by while continuing on the verap. Good to get off it, but not necessary (I don't think) at the level you're taking. Setting up an O2 system using welding oxygen seems like it should be a top priority, and you can probably get that done pretty quickly. We can walk you through it. If you live anywhere near a supplier of welding O2 (and particularly a Harbor Freight store), you might be able to get the core elements, a tank and a regulator, pretty quickly, but you'll need a mask. Folks here will tell you that the O2ptimask is worth the extra cost: '>http://www.clusterheadaches.com/khxc You don't have to stop the melatonin. You might want to consider the "vitamin d3" approach that has helped a lot of people. You might or might not want to hold off on that until you've seen the results of your mushroom "busting," so you're trying only one new thing at a time. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Welcome, 'Scratcher. Glad you found this site. The folks here are great. What is the rest of your CH reg? Some things can block busting, and you have to "detox" from them for five days before the psychedelics can be effective. Imitrex is one of those things. Read the files in the "ClusterBusters Files" section of this board (the numbered ones by TommyD, particularly) -- they'll give you a rundown on all the basics. But also be sure to let us know how you're doing, and what you're doing -- there's a lot of practical advice to be gained from the folks here. It might be good if you mentioned the size of your mushroom dose -- 1 - 1.5 grams of dried shrooms is the most commonly suggested first dose. Are you using oxygen? You can set up a system without insurance. See the "Oxygen Page" under the MENU tab at the left for more info, and then . . . you know . . . ask questions if there's more you want to know. Also -- though maybe you won't need this -- there are some tricks for extending imitrex. Here's a link to one of them: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 (Imitrex does definitely block busting, though, as I mentioned.) Stay in touch.