CHfather

Couldn't agree more.

Fabulous -- and with a link to the CB site, too! For a young fella (it's all in your perspective), that guy Bob is pretty articulate. Interesting (from the author) >>I couldnÂ’t find a media outlet at that time [about a year ago] to take the story<<

It's here (you might have to join (free) to read it). http://www.medscape.com/viewarticle/781651_1

Echo, you haven't said how the oxygen is working for you now -- any improvement???? Two thoughts about truffles strains: 1, You might PM Oscar, who is from the Netherlands. He has not been at this board lately, so I can't say that you will succeed in reaching him, but he has been very helpful to other folks with CH. Here's his "member" page. You can PM him from there. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=003C2C2E3D4F0 2. Using the search bar at the upper left, you could enter the word truffles and the word strain. There seem to be a number of responses to your question there. Here's one, that seemed potentially right for you because of the character of the experience: >>What i have heard from online vendors in the past is that CH suffers they have had contact with have pointed to the strain called Tampanensis in truffle form. (this is the webshop description) The TAMPANENSIS sclerotia truffle gives visuals and deep thoughts. We love the Tampanensis; it is the most pleasant of all truffles species. I have often busted with a stronger strain like Mckennaii, but Tampanensis gives a more mellow not quite as intense experience and I have found it does the job! <<< That's from here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317484551

His state's Department of Human Services, I'm pretty sure. Very relieved to hear that you seem to be out from under this, bub. Hoping that you're doing well -- you deserve it.

  It's my assigned role here to suggest that he's probably not using O2 right. It doesn't work for a very tiny fraction of people who do use it "right," but almost always we find here that people who say it doesn't work for them can get it to work if they use the right strategies. You/he might take a look at the CB oxygen page under the MENU tab on the left side of this page. (Or maybe he's just pretending it doesn't work -- https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1391061090 )

Yes, there are reports of that. Not to get overinvolved in the details of your romantic life, but many forms of vigorous exercise often quell CH attacks.

Here's a video showing how to assemble the O2ptimask (simple as it is, it stumped me) and suggesting ways to use it. He demonstrates the breathing tube that you can use instead of the mask, and has an important suggestion for using that tube with a high-flow system (block the non-breathing end of the tube as you inhale). Some people like the tube (they feel like they get a better inhale, and it's less "claustrophobic" for them than the mask); others strongly prefer the mask, in part because they find that taking in O2 through the nose is soothing in itself.Â

David, thank you for this. With this level of GammaCore outcome, would you drop it altogether and just use O2, except in situations where oxygen isn't available? I assume you haven't yet tried just using it for only a minute or two and then switching to O2 to see how it affects an O2 abort (making it more like using an energy drink)?

Unfortunately, those licorice sticks are different from the licorice root extract that's used for CH.  When your oxygen starts working right it will make a huge difference. The thing about oxygen is that there are no side effects. With almost every other prescription CH med, there are side effects, often significant ones, and even long-term ones. (With lithium, for example, you should be getting regular blood tests to make sure you're getting enough but not too much -- and some studies have shown that when people with CH stop taking lithium, they sometimes experience severe "rebound headaches.")  That's a reason why busting and D3 are so appealing to many people -- no significant side effects have shown up for either of them. The licorice root you have to be somewhat careful of while you're taking it, because it apparently has some significant effects if you take too much for too long, but over the short run, used properly, it doesn't seem to create any distress. I'm just saying that the more that you can successfully treat your CH with relatively side-effect-free treatments, the happier you're likely to be. There's nothing on your doctor's list that will not have side effects, even pretty major ones.

I see Jeebs got in ahead of me once again! So this is redundant in many (or most places). I wish he would quit doing that! Many people use seeds (rivea corymbosa seeds) that contain a busting agent, but which are not hallucinogenic at the level needed to treat CH. Something to think about. There's plenty of stuff to try! Two things that your doctor probably wouldn't know about but which have helped a lot of people with CH are a "vitamin D3" regimen, and licorice root. You can read about them here: D3: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Licorice Root: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

Echo, when you read that oxygen page under the MENU tab, you'll see a lot of things that will probably help you (such as blocking the empty holes on your mask so you're breathing in only straight oxygen with no room air mixed in, and using an effective breathing strategy). There's also a link there to a website in Europe that sells the O2ptimask. One thing that's not mentioned there that helps some people is to look down toward your feet as you breathe. A well-known CH doctor here recommends that to all his patients. Also, taking a deep inhale and then holding the air in your lungs for a few moments before forcefully exhaling it is highly recommended. The flow rate you want to use is one that allows the bag on your mask (if you have one, as Denny notes -- you should have one, or you don't have a proper non-rebreather mask) to always be full and ready for your next inhale. That might be 25, or it might be less, depending of what breathing strategy works best for you. It's great that you have a 25 lpm regulator -- most people here have to buy their own. You are in a perfect location (the Netherlands) to try busting with psilocybin. Many people there have used "truffles" with excellent success. And you could keep taking the verapamil if you want to, and maybe even the lithium, though that might make the psychedelic effects of the truffles considerably stronger. If you're going to stick with conventional medications, I wonder why your doctor hasn't prescribed injectable sumatriptan (Imitrex, in the US) to abort attacks, particularly when the O2 wasn't working (which we hope will change now). But I try not to spend too much time wondering why doctors do what they do.

I suspect it depends on what you're comparing it to. They probably know more at MC than your typical crappy neurologist knows, and might explore more thoroughly than that typical crappy neurologist.  I'd bet a lot that they don't know more than a Dr. Goadsby, or a Dr. Kudrow, or that Cleveland Clinic doc that some people like. Guaran-darn-teed they don't know more, or care more, than Dr. Brian McGeeney. You can check out the MC website and see what they're talking about -- http://www.mayoclinic.org/diseases-conditions/cluster-headache/basics/treatment/con-20031706. I don't see anything new there (except one thing, octreotide, that's not new (studies in 2004) but was new to me (it doesn't seem very special). Maybe they keep their miracle cures secret. Not saying you wouldn't get good treatment there. I just seriously doubt that there's a breakthrough waiting. If there is, please let us know.

RC seeds help stop or prevent cycles for a lot of people. You can buy them from www.tranceplants.net, which is a Canadian company. The preparation is to grind them and then soak them in water. When you get closer to doing that, check back for details. To be clear again, preparing and drinking them is against the law. A typical dose is around 60 seeds. People do preventive dosing at different intervals -- some every month, some less often, some just when they feel the first signs of a cycle coming on. When you're in cycle (and, yes, many people do go into cycle even though they've been doing preventive dosing), you might need several doses to treat your CH. Most people don't like to keep them too long because they're no longer fully fresh after a few months.

Rob, the initial layout for the D3 stuff is not small ($50???), but the cost on a daily basis is maybe a dollar or two. Consider licorice root, too: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 An energy drink (Red Bull, Monster, etc.) that you drink as soon as you feel an attack coming on can sometimes abort an attack, or at least make it less severe. How much melatonin are you taking? Some people here get up to 18 mg. or more at bedtime. If you are interested in busting, you can do it with seeds (rivea corymbosa seeds, or RC) that you can buy legally (it's illegal to convert them into the substance used for busting, but it's very very easy to do so) and don't cost very much. But . . . am I right in gathering that you're not currently in cycle? I'd encourage you to stop worrying about becoming chronic, get your whole arsenal ready to treat your next cycle, and work on prevention (the licorice root, energy drinks, and melatonin are more things that people do when they're in cycle). D3 has been a good preventive for many people, and so has verapamil, and so has preventive busting while out of cycle. Nothing seems to be a miracle treatment, and certainly nothing is a cure, but if you keep trying you're going to make it a lot less hard on yourself. I'd also encourage you to read the CB oxygen file that's under the "MENU" tab on the left side of the page and make sure your oxygen system is working as well as it should.

Hey Rob, just to answer your questions, a recent big study showed that CH switches sides in about 30% of people with CH, and it seems people's cycles often get longer over the years . . . doesn't mean you're becoming chronic. How are you treating your CH? You have oxygen? Tried the D3 regimen? (https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804) Licorice root? Busting?? Energy drinks? Melatonin? It would great if you could find a way to make it to the 2014 conference, where you'd meet lots of great people who have CH. Here's a photo from the 2013 conference: Â

At a previous thread, Bob (alleyoop) wrote: >>do not let them deaden you with Xylocaine with EPI (epinepherine) . . . request prilocaine or anything without EPI.<<<

Moxie (and didg), when my daughter had a tooth removed about ten years ago it triggered her first really bad cluster cycle. She had had CH attacks before, but they were tolerable; this is the one that sent her to doctors looking for answers (took five years to get a correct diagnosis, of course). I don't know what numbing agent was used, but it probably was epi. So at least in her case, it had enduring effects even after the epi wore off (if it was the epi; could of course be who knows what else . . . some pressure that the dentist applied while removing the tooth; the extraction itself . . .).

Practically the same story for me. But I haven't taken it to the ethical place you have, Jeebs, regarding vegetarianism. So for me, it's more like no more in-person killing of animals.

I was sure I had modified my post to give credit to Ricardo when I noticed later that he had actually posted this same article some time ago. And, as I said in that modification that disappeared, I figured the article was good enough to post again for anyone who had who missed it back then. So I'm glad you saw it, Art.

I'm sorry to say that I have failed at Wikipedia with regard to inclusion of hallucinogens as a treatment. By their standards, there just isn't enough medically-verified evidence to include it. I threw everything I could think of into the pot, but it wasn't enough. As one of the editors wrote to me, >>The fact that there is to date one study on psilosybin (and it's not even a controlled study, it was interviews) is not going to change no matter how many secondary sources we can dig up that talk about that one study.<< Given that Wikipedia has a strict policy about what it will use, I had nothing to come back with except, ultimately, a plea that mentioning these substances could help people. I think I was/we were given a fair hearing. I don't think the page has actually been changed yet, and there still seems to be some possibility that maybe there will be mention of psilo/LSD under a different heading, such as "Research" . . . I guess we'll see about that. I'm sorry that I couldn't do better. If anyone wants to read the exchanges there, they are at https://en.wikipedia.org/wiki/Talk:Cluster_headache, mostly in the "Back to Psilo" section, though some spills over into other sections.

2013 article by Dr. Brian McGeeney (hmmm, why is that name familiar? [smiley=huh.gif]). http://www.medscape.com/viewarticle/781651_1 Thank you, doc, thank you thank you.

Jeff, Heart disease also low, especially considering the percentage of smokers. Rozen theorized some possible "protective effect" of CH, but trying to figure out what that might be wasn't really part of what he was doing.

In Rozen's large 2011 study of CH, he apparently asked people about other conditions. I'm not sure how this question was asked -- open-ended, I assume, but maybe it was focused on some particular things. FWIW, here's what came from that: A personal history of depression occurred in 24% of the survey responders, while 14% had a history of sleep apnea, 11% restless leg syndrome, and 9% asthma. Interestingly, a very low percentage had known cardiovascular disease (myocardial infarction 1%, bypass surgery 0.3%, and coronary stent placement 1%). Strokes were rare occurring in only 0.2%.A diagnosis of emphysema or chronic obstructive pulmonary disease (COPD) was noted in only 2%, while lung cancer occurred in only 3 patients or 0.3%. Peptic or duodenal ulcer disease was noted in only 5%, while diabetes occurred in 3%. Epilepsy was noted in only 1%.A personal history of migraine and other headaches was not obtained. http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCwQFjAA&url=http%3A%2F%2Fwww.ouch-us.org%2Fchgeneral%2FCluster_Headache_in_USA.pdf&ei=6-vOUujBHsbP2wXVlIEo&usg=AFQjCNE-e4t9U7Gt6P4D8iuKFBJW39KbAA&sig2=LltYRxfRDA23lMNIdlf_uw&bvm=bv.59026428,d.b2I

David, here are a couple of places that say they make oxygen available, in tanks, worldwide. I don't know anyone who's ever used a service like this, so if you learn anything, I'd love to hear about it. http://www.travelo2.com/OXYGEN_LIQUID.htm http://www.oxygenworldwide.com/ Also, Linde has a service called Oxytravel, which says it can arrange O2 worldwide. I have a hard time navigating their website, but it gives this number to call (from the US): 866-216-5120 (http://www.linde-healthcare.us/en/home.html)      I'm thrilled that the GammaCore is working so well. Do you get to keep it?