CHfather

OMG -- 16 years!! What a survivor you are!

There's a little "20 Facts About CH" thing that ClusterBusters created. I don't know whether someone at work might benefit from seeing this . . . but it's attached. 20_Facts_brochure_8-24-13.pdf

T'E', as I'm remembering, you have an M tank at home, but it takes a neuro appointment to get a portable tank. In addition to lighting the aforementioned fire, might you look into getting a small welding oxygen tank that you could bring to work (or at least keep in your car)? That's very easily done in the US, but I have no idea what the challenges might be in the UK. Does anyone know whether it's feasible to get welding O2 and a regulator there? Is see this, for example -- http://gascylindersuk.co.uk/shop/index.php?_a=product&product_id=1014 -- but I'm not sure at all . . .

I'm no expert, but I think there's a difference between meditating and fantasizing. All wonderful to read!!!

didg, With your diligence (maybe we should call it didgigence from now on!) and commitment, I don't think you should leave any path unfollowed to help your son and others. I was only pointing out that nitroglycerin seems to have its CH-causing effect not by exciting the sinuses in some direct way but through vasodilation, the evidence being that sublingual nitro, which probably doesn't have a pronounced direct effect on the sinuses (as far as I know, which is really not very far), causes CH attacks (and the injections of histamines that can also bring on CH attacks also bypass the sinuses as their first location). None of this means that your son's attacks, or the attacks of others, aren't possibly related to sinus/ear/throat cavities; it only means (to me) that the effects of inhaled nitroglycerine don't seem (to me) to support your thesis, since nitro has the same effect when taken in in different ways. I also remember reading something posted over at ch.com where a person (a research professional of some sort, as I recall) was skeptical for some reason that I don't fully remember (having to do with the timing of vasoldilation created by nitro in contrast to the timing of when nitro-induced CH attacks occurred, as I remember it) about whether it is really the vasodilation effect of nitro that provokes CH attacks at all. In which case . . . maybe it is some effect on some cavities, more indirect than just inhalation, but still there. Complicated.

hot weather, you mean. overall, this list (except for the alcohol) seems pretty quirky and unreliable. i don't know why they would mention only inhaled nitroglycerin, which takes us back to your point in your preceding post. many, if not most, of the studies that induce CH with nitroglycerin use it sublingually (for example: http://archneur.jamanetwork.com/article.aspx?articleid=568492; http://www.ncbi.nlm.nih.gov/pubmed/12807519; and http://www.ncbi.nlm.nih.gov/pubmed/8895232). . so my overall point is that if sublingual application induces CH, it's almost certainly the presence of nitro in the bloodstream that creates that effect, and not likely to be an effect on the sinuses.

didg, Nitroglycerin isn't inhaled to create a CH attack. It's put under the tongue (as it generally is in "normal" use), as a tablet or spray, so it can be absorbed rapidly. Its effects are generally (but not universally) understood to be the result of rapid dilation of blood vessels. There might be some fumes that are inhaled, but that's not the source of its effects. (And nitroglycerin does not cause CH attacks in people with CH who are out of cycle.) As I was checking on this to be sure, I noticed that in some early studies attacks were induced by injecting histamines (which also dilate blood vessels) under the skin. Looking into that a little further, I saw at some reputable sources something I had never seen before -- that cluster headaches are also called "histamine headaches" (here at the National Headache Foundation website, for example: http://www.headaches.org/education/Headache_Topic_Sheets/Cluster_Headaches). I also noticed this at that same website: >>Cluster headaches are not associated with the gastrointestinal disturbances or sensitivity to light that is found in migraine.<< I mention this in relation to your curiosity about "gastrointestinal disturbances" and CH. I don't know enough about migraine to even know what this is referring to.

Paul, hang in there. You are a very courageous person, and we all believe that this will help you. We are pulling for you. Since you have been in touch with Tony and others, I will assume that you have received advice about other things you can do to help you quit the triptans -- oxygen, energy drinks, and vitamin D3, to name a few. If you want to know more about those things (or anything else), just ask. We are here for you.

Yes, indomethacin is good for the hemicranias (paroxysmal and continua), but pretty much worthless for CH. I would think he'll know pretty quick whether it's working or not. It can be very hard on the stomach/digestive system, and is sometimes prescribed along with something like nexium for protection. (Since I might sound like a doctor here, I should make it clear that I'm not.) Seems he's tried, or is on the verge of trying, all the major stuff, and is now looking at last resorts. Almost certainly the doctor won't know anything about D3, and there's a good chance she/he will tell you it's too much D3. Which it isn't, or at least doesn't give any indication of being. Get a blood test that includes vitamin D level (pretty standard) and testosterone (sometimes a culprit). If he hasn't tried energy drinks/shots, or at least a strong cup of coffee, to abort, he should do that. Drink it down at the first sign of an attack. Some people find that melatonin at night is beneficial--again, usually at doses that would be considered high, starting at 6-9 mg. and working up as high as 20 or more. I wonder whether your doctor was actually suggesting www.clusterheadaches.com (where conventional treatments are discussed a lot). We try hard not to be argumentative here, but I gotta say that looking at his situation, if the indomethacin doesn't work (if it does, it would mean he almost certainly doesn't have CH), I would seriously reconsider the idea that "busting is not a consideration at this time." You might want to take a look at this thread (and the blog post linked to in the first post), from a guy who said the same thing: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1411480973. You don't need to respond to this -- like I say, we're not here to argue -- but just to be clear, there are effective busting strategies that involve no or almost no psychedelic experience at all. They can easily be pursued with close to zero legal risk. He wouldn't feel stupid all the time (as you put it), and he could possibly break free from all that he's suffering.

That's outrageous, and I would think there must also be something illegal about it. I'm sure you've called your doctor. If medical oxygen suppliers are regulated, you should call the offices of your state representative and state senator and get them involved. As a possible workaround, might you be able to get them to bring you a big tank (M tank) that wouldn't need refilling as often? If that's too expensive and/or you can't arrange it or find a different supplier, what about getting welding O2? [i see THMH just suggested this.]

Fab, the real meditators will probably have better advice. I can tell you two things. First, the "relaxation response" popularized by Dr. Herbert Benson is a pretty simple form of mind-clearing meditation: >>>Benson can be largely credited for demystifying meditation and helping to bring it into the mainstream, by renaming meditation the “Relaxation Response.”<<<<  At the bottom of this page -- http://www.psychologytoday.com/blog/heart-and-soul-healing/201303/dr-herbert-benson-s-relaxation-response -- are the recommended steps. I have to say that instead of the word "one," I liked using "Om." (I found that "one" did have suggestive meanings for me that were distracting.) Some people find that relaxing background sounds (water, gentle chimes, etc.) can also help. Tons of these on youtube and in stores. Here's something I've done for many years, which I suppose might be considered quite a bit stranger. There are some lovely mantras in the Hindu tradition. I picked a short, simple one related to the "elephant god" Ganesha, "the obstacle breaker." Found a youtube video that I could just play in a comfortable seated position, usually with headphones on. I would "watch" it (just letting the images be there, without paying much attention to them, or closing my eyes) and say the words along with it. After a while, I could easily do it without the video, just on my own. Here are a couple: https://www.youtube.com/watch?v=rsNpEyu9TfE '>https://www.youtube.com/watch?v=_h2rFVPCSPE In Hinduism, these mantras are a form of prayer, invoking the help of the deity. It is believed that they must be said in multiples of 9, with 108 repetitions being optimal. (That's why the second video tells you that they could only fit 98 repetitions on the video.) That raises two things. First, some Christian sects would see reciting this mantra as a sin, since it is "praying" to another "god"; second, if you want to respect the tradition and you're doing it on your own (without a video), you have to count each time you say it. Eventually, I could confidently count it on my fingers, but one can also buy a "mala," which is a string of 108 beads for counting. I found that this mantra was just about the right length (10-20 minutes) and very refreshing. One thing it has taught me is that the reaction I often have -- too busy, don't have time for that -- is related to how much stress I have let into my life. I have plenty of 10-20 minute periods for other things, but when I find that I don't think have 10-20 minutes for just being with me and relaxing, something's wrong.

Renee, I can't answer your specific question, but if you tell us more about your husband's situation (episodic or chronic, years with CH, treatments tried, why you're looking for a second opinion, etc.) I'll bet we can at least help you/him be well prepared for that appointment. I'm sure you've read already that oxygen, with a proper flow rate and non-rebreather mask (or, better, the mask made specifically for CH) is the #1 essential. After that, most folks here have opinions, based on experience and study, about the other pharmaceutical options (most typically, that would probably be verapamil, prednisone, and imitrex, alone or in combination, and maybe topiramate and a whole bunch of other possibilities, such as gabapentin and lithium). You probably have also read enough here to know that practically everyone here would urge him to consider busting as the highest-effectiveness, lowest-side-effect treatment there is.Â

Thank you, Bob, for all you have done to bring about the exciting prospect of these studies and where they might lead. And thanks also to all those who have been beside you in these efforts for so long.

This is so great to read, Fab! I'm curious -- Do you think that being "discovered" by your husband during an attack (which you wrote about in an earlier post) has somehow made it easier for you to make these lifestyle changes? One thing I was surprised by in the personal stories in that booklet "Living with Cluster Headaches" was how much effort some people with CH go to to hide their pain from others, and I wondered as I read that whether hiding the pain from others might be a deterrent to trying "unusual" things to address the pain. From a research perspective, it's just too darn bad that you've also been having such good results from the RC. As you say, it screws up the assessment of the variables.Â

well, there's not a lot of data here, so i have two very weak thoughts: 1. it seems odd that he ran out of O2 after just a few hits. assuming that the tank was full and he's using it effectively, it seems that even a small tank should have lasted longer. makes me wonder whether he's reliably reporting everything to you. 2. we've talked about MSG as a trigger for some people (CH and regular headaches), and possibly for your son (i think bacon, which sometimes has MSG, was on your watch list for a while). so i'm suggesting, very weakly, that chicken tacos are often laced with MSG, as are the things that kids often eat while doing all-night stuff, such as flavored chips (tortilla chips, potato chips, etc.). just a very weak caution. the beer is a more likely culprit, i suppose, but i figure maybe he might drink beer pretty often but maybe only occasionally accompany it with MSG-laden items. (i got really bad pancreatitis from MSG. took me years of intermittent agony to figure out that that was what was doing it to me. so i see that as a possible culprit more vividly than other people would.)

par, the "Cluster O2 Kit" (formerly known as the O2ptimask) comes with a nice breathing tube that can be used instead of a mask. In the US, it can be ordered here: http://www.clusterheadaches.com/khxc/. Used to be available in Europe (where I think, for some reason, that you are) at headachemasters.com, but apparently it's been discontinued there. I think you can have one shipped there, but I don't know how pricey that would be. The "kit" itself is $23US. A lot of people like this setup for other reasons (bigger, stronger, bag, etc.), and the mask might even be good enough to give you a good seal.

I'd say www.iamshaman.com and www.tranceplants.net have both been reliable seed suppliers for a lot of folks. Psychoactiveherbs.com was also well regarded, but as far as I can tell they no longer sell RC (or HBWR).

i think it's george clooney.

par, if you don't use the strap to hold the mask to your face, it will just fall off if you fall asleep.

I mentioned in an earlier post in this thread that part of the difficulty of finding an effective treatment for CH is that you can't give CH to lab mice and then just throw possible medications at them until one seems to work. I have also suggested that I am hopeful that advances in brain science will mean advances in understanding and treating CH. Here's a story from today, about a huge advance in finding a possible treatment for Alzheimer's: growing Alzheimer's cells in a gel. It's exactly the kind of thing I am hoping might happen regarding CH (though it's a lot farther off for CH, of course). (By "kind of thing," I just mean some big breakthrough that changes the game, not necessarily this specific one.) Here are a couple of early paragraphs: >>>“It is a giant step forward for the field,” said Dr. P. Murali Doraiswamy, an Alzheimer’s researcher at Duke University. “It could dramatically accelerate testing of new drug candidates.” . . . It allows researchers to quickly, cheaply and easily test drugs that might stop the process in the first place. The crucial step, of course, will be to see if drugs that work in this system stop Alzheimer’s in patients. . . . . . Dr. Tanzi is now starting an ambitious project to test 1,200 drugs on the market and 5,000 experimental ones that have finished the first phase of clinical testing — a project that is impossible with mice, for which each drug test takes a year. With their petri dish system, Dr. Tanzi said, “we can test hundreds of thousands of drugs in a matter of months.”<<< http://www.msn.com/en-us/news/us/researchers-replicate-alzheimer%E2%80%99s-brain-cells-in-a-petri-dish/ar-BB8W5er To me, this is an example of why funding is so desperately needed to look for CH treatments. The government provides about 500 million dollars a year for Alzheimer's research.

Darci, here are a few things for you to read: Oxygen (which you really, really, really want to get): https://clusterbusters.org/oxygen-information/. (This is under the black and white MENU tab on the left side of the page.) Make this a priority, either through a medical prescription or, if necessary, by using welding oxygen. Busting basics: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865. (Many more files in the "ClusterBuster Files" section of this board.) LSD, psilo, and LSA are the most commonly used busting agents. Low doses, often. But others are discovering other substances that also work. So it's hard to answer your "maybe . . . maybe" question in your last post, but the answer is probably yes. 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 Two short-term things: Try an energy shot, energy drink, or strong cup of coffee at the first sign of an attack (this generally does not keep people awake at night). Try melatonin at night, starting with something like 6-9 mg. and moving up to a dosage that helps. In case I haven't emphasized it enough . . . you want oxygen, ASAP.

WEGO Health Activist Lifetime Achievement Award. Richly deserved. You can endorse him for the award here: https://awards.wegohealth.com/nominees/7511

bassoon, would you mind saying what the RC dose levels were that induced some kind of trippiness? even knowing that there are many variables (including personal ones and ones related to seeds' LSA content), it would be helpful to know where that threshold was for you. thank you.

Would be so, so happy if this is an answer for you, bg!! Thanks for the conference pics. I still love the one of you and me from last year's conference.

Thanks, THMH and HL.