CHfather

Well, there are some cases of CH patients treating sleep apnea and having symptoms reduced (see the citation in my previous post), but sleep apnea in itself can be a bad thing, and probably should be looked into for its own sake, even if treating it doesn't affect CH. In one study, 4 out of 5 people with CH (31 out of 39 randomly selected) were found to also have various degrees of sleep apnea (http://www.ncbi.nlm.nih.gov/pubmed/15186306). In the earlier paper, it says "The high incidence (80.64%) seen in this population suggests the cluster patient should receive a sleep evaluation and perhaps intervention with continuous positive airway pressure (CPAP) or an appropriate dental device." That's why I posted this in response to didgens' question.

sleep apnea is relatively common among people with CH. http://www.ncbi.nlm.nih.gov/pubmed/19272283

thanks for the info, didg. i've been wondering how he was doing. sounds good.

Standard advice is to inject imitrex in the thigh or shoulder. It takes about one minute for all the blood to circulate through your body, so it's hard to see any likely difference in speed of action whether you inject it in your thigh or your shoulder (could be that blood from the leg gets to the brain a little bit faster).

yes, i'm sure he's very glad you're there while you two figure it out. most folks don't think with perfect clarity during an attack. at 20-plus minutes per abort (at least while you figure it out), you'll run through the small tank in just a few attacks. you'll need the large one, i suspect. two of you should be able to carry it fine, i think -- three of you, for sure. imitrex was near-poison for my daughter -- but as you know, it's very valuable for many people. i am hoping that in these early stages, the O2 will be good enough. (i'm assuming you're not planning in busting now (??)). if i was his doc, i'd consider verapamil as a preventive. but i'm not -- and his actual doc is 100 times smarter and 1000 times more experienced than me. maybe put that redbull by his bed, so he can try drinking it on the way to the O2?

 he shouldn't have the mask strapped on. cut the strap. he should hold the mask firmly to his face when inhaling, and remove it when exhaling. if there are open holes in the mask (a circle of small open holes on one or both sides), they should be blocked, with tape or with his thumb, so no room air gets in as he inhales. if there are one or two circular gaskets (almost always white or green, i think) that allow him to exhale through the mask but keep room air out when he is inhaling, then he might hold the mask on while exhaling, too. sadly (as you say), but also happily, he will almost certainly come to see "that thing" as a very good friend. how much O2 do you have? at least two cylinders, i hope. Â

didg, if the oxygen helped him, that would strongly suggest to me that it's CH, not his tooth/teeth, causing the problem. wholly, and strongly, agree with jeebs about where the O2 should be. (maybe he smokes and you're concerned about the O2 being in the same room? if so, we can discuss.)  not really so sure about having to breathe room air every five minutes. most (i think) stick with the pure O2 for as long as it takes to abort (maybe after 20 minutes at 15 lpm, some room air . . . but i'm betting that at 15 lpm, with good breathing strategy (which he will develop), he'll be knocking them out in about 10 minutes.) the main thing is to get as much O2 as possible into those lungs, and as much room air out, as quickly as possible. remember/remind him that he should tilt his head down as he breathes, as kudrow has advised. as a parent, i tended to hover, wishing i could help, offering things (ice, neck rub . . . sympathy). eventually i was told that my own distress wasn't really helping things, so i waited to be asked (which came to mean that the attacks would most often get aborted quickly while i slept -- hard as that might be for you to imagine right now).Â

Finally set up and tested the demand valve I bought from the eBay site at the top of this thread. Worked great. I suppose that's no assurance that the other ones will -- there are still 6 available -- or that it will continue to do so, but I see that the seller has 100% satisfaction ratings at eBay. The mask is really comfortable, too. http://www.ebay.com/itm/Used-LIFE-SUPPORT-PRODUCTS-INC-DEMAND-VALVE-SWITCH-L063-05R-WITH-HOSE-AND-MASK/161085791809?_trksid=p2045573.m2042&_trkparms=aid%3D111000%26algo%3DREC.CURRENT%26ao%3D1%26asc%3D27%26meid%3D1468536138082648837%26pid%3D100033%26prg%3D1011%26rk%3D2%26rkt%3D3%26sd%3D300946941177%26

didg -- Kudrow didn't put him on anything preventive???

Sweet, The company that's providing you with the machine (a "concentrator") should also be able and willing to give you tanks and a regulator that will go to at least 15 lpm. It's hard to imagine why you wouldn't want tanks--the only two reasons I can think of are (1) maybe tanks would cost more and/or (2) tanks run out and have to be refilled, whereas the concentrator just keeps going. But even at 12 lpm (if your concentrator goes that high), you're not getting the same amount of O2 as you get from a tank, because the O2 from a tank is pretty much 100% O2, while the O2 made by the concentrator has some room air mixed in. Plus, concentrators are typically pretty loud, which can be an extra irritation when you're dealing with an attack. Not to mention that the concentrator is not portable. You can take a small tank in your car, to where you work, or other places.  In short -- heck, yes, you want a tank. Like Jeebs said, you'll abort stronger attacks more successfully (and other attacks considerably faster). You want multiple tanks, in fact--at least one big ("M") tank and one smaller ("E") tank. You want tanks, as Jeebs likes to say, "toot sweet," Sweet. Have you tried an energy drink or energy shot (or at least a strong cup of coffee) to knock back an attack? Drink it at the first sign. As for BOL, not quite sure what you're looking for. No clinical trials underway right now. We're told that maybe there might be some pretty soon (but we've been told that a lot). We're also told that if there aren't any within the next six months or so, there might not be any for a long time. The company with the BOL patent is Entheogen (www.entheogencorp.com). If you go there and sign up, you'll be informed (we are told) of any trials that get started (pay no attention to what it says on the home page about BOL "undergoing clinical trials"). Or if you just check back here regularly, I'm sure CB will be among the first to know if trials get started. If you were looking for info about past trials, there's a link on the "Exploration" page at the Entheogen website.

Some discussion of new approaches in treating migraine and CH, and possible new, faster delivery systems for meds, with fewer side effects. A couple of pages from the article are here: http://link.springer.com/article/10.1007%2Fs40263-013-0090-x#page-1 The abstract says: There remains a significant need for new medications and devices that can provide effective, rapid, and sustained pain relief without adverse effects or recurrence. Several new acute and preventive therapies for the treatment of migraine and cluster headaches have shown promise and are currently under investigation. This article covers innovative delivery mechanisms, calcitonin gene-related peptide receptor antagonists, antibodies to calcitonin gene-related peptide and its receptor, 5-HT1F receptor agonists, transient receptor potential vanilloid receptor modulators, orexin receptor antagonists, glial cell modulators, and neurostimulation. There's some discussion of this over at ch.com (I'm sorry if there also has been here, and I have missed it): http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1373679109 Â

“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!