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Everything posted by CHfather

  1. Not sure exactly what you’re looking for, Sue’, but I assume it’s some kind of confirmed information (“What we know”) as opposed to just ”what we think.” There have been two major large interview-based studies of people with CH: Todd Rozen’s in 2008 and one by Larry Schor and others around 2018. The first two articles here are from Schor’s work. The second two are recent studies that seem applicable to your thinking. The last three are related to Rozen’s work. https://headachejournal.onlinelibrary.wiley.com/doi/full/10.1111/head.14237 [epidemiology, 2021] https://pubmed.ncbi.nlm.nih.gov/33337540/ (pain, 2021) https://journals.sagepub.com/doi/full/10.1177/03331024211018138 [diagnosis, 2021] https://www.nature.com/articles/s41598-020-59366-9 [effects, 2020] Rozen’s big study (2008): https://pubmed.ncbi.nlm.nih.gov/22077141/ (“Eye color: the predominant eye color in cluster headache patients is brown and blue, not hazel as suggested in previous descriptions. ") Spin-offs from Rozen’s big study Women: https://jnnp.bmj.com/content/70/5/613 Tobacco: https://pubmed.ncbi.nlm.nih.gov/29536529/
  2. Way too kind, Jeebs. Very deeply appreciated.
  3. At the top of each page there is an envelope icon. Click on that and then type xxx in the "To" line.
  4. As Pebbles' says, if you get a correct diagnosis or they take their word for it that you have CH, then you could suggest something like, "Please check with Up-To-Date or Medscape or whatever service you use, which will tell you that subcutaneous sumatriptan or high-flow oxygen with a non-rebreather mask are the best acute treatments." (Of course, if you've been having an attack long enough that it's still going on after you've gone to the ER and waited to be seen, oxygen might not be very helpful.) Alternatively, you could print out and carry with you a recent article about treatment of CH, such as this one -- https://pn.bmj.com/content/19/6/521 -- or the Word doc you get from googling [goadsby "treatment of cluster headache"].
  5. It could be, of course, that it takes some very specific type of head trauma to do something that causes CH -- a bump in just the "right" place that discombobulates the hypothalamus in some way, for example. I don't have a strong feeling one way or another about this possible cause, just sayin'.
  6. "Highly annoyed" could be an understatement related to past "political" discussions here of coronavirus (but I'm not suggesting at all that Fork boy was doing anything other than asking a reasonable question. To partially answer that question -- I do know a person with CH, on the D3 regimen and using Benadryl in cycle, who contracted Covid). But just in terms of people with CH and disease, Rozen's study of 1,134 people with CH, conducted in 2008 through surveys of people here and at CH.com, had two very interesting findings. Considering that there is a strong prevalence of smoking (and often heavy smoking) among people with CH, there were only three reported cases of lung cancer among the 1,134 survey respondents (the CDC estimates that 10-20 percent of smokers develop lung cancer), and "cluster headache is associated with a low prevalence of cardiac disease as well as cerebrovascular disease, even though the majority of CH patients are chronic heavy smokers." This was long enough ago that that it's unlikely that more than a very small percentage of the respondents had been either doing the D3 regimen or using diphenhydramine. Could be just statistical anomalies, of course, but could also be that just having CH somehow provides some kind of protection against some conditions, in ways that no one really understands.
  7. From Rozen's big report: "A history of any significant head trauma prior to cluster headache onset was noted in 18%. The amount of time that lapsed between the head trauma and onset of cluster headache was not obtained." Maybe lots of people don't remember significant head trauma.
  8. Here's a more detailed breakdown of the data from that same 2008 survey (which surveyed people from ClusterBusters and also clusterheadaches.com, I think). https://pubmed.ncbi.nlm.nih.gov/29536529/ You have to remember that the "exposed" category includes people whose parent(s) smoked even if they don't smoke, people who once smoked, and people who were smokers at the time of the survey. "Nonexposed" is people who haven't smoked and were not exposed to second-hand smoke. Because that "exposed" group is so broad, I don't think this tells you anything at all about the effects of being a current smoker on CH, and so it seems to me to have no action implications. You can't go back and stop your parents from smoking, and you can't never smoke if you have ever smoked. The first highlighted finding is: "Nonexposed cluster headache subjects are significantly more likely to develop cluster headache at ages 40 years and younger, while the exposed sufferers are significantly more likely to develop cluster headache at 40 years of age and older." Is this saying that smoking (or having been exposed to smoke) delays the onset of CH, and/or not smoking/not being exposed to smoke accelerates the onset? That would be pretty weird if it were true, but maybe somehow valuable to researchers. But I don't think they can be talking about causation; they can only be observing correlations, since you can't isolate being "exposed" or "nonexposed" from all the other variables that might account for any of the findings, just as "The exposed population is statistically significantly more likely to have a history of head trauma" seems only to be describing a relationship, not a causal connection.
  9. I'm sorry for somehow thinking it was spiny you were referring to -- there was no reason for me to think that. I think this topic has been fully done now, so I'll just add that Pebbles' -- a great, generous person, with vast knowledge -- probably wasn't dissing you, either. Many of us here have relationships, both on the board and in off-the-board messages, that go back a lot of years. I have had at least three substantial run-ins with prominent figures here, after each of which I thought, "I'm just gonna quit." For better or worse, I'm still here, and, definitely for better, they are, too. Dealing with electronic representations of actual humans is a tricky business.
  10. spiny isn't a crapper-onner, and I don't think she was doing that here. I think she was just observing that doing all the right dietary/nutritional things is tough. In general, I think your posts receive more thought and respect than you think they do. I read and re-read your long hypothalamus post, for example, and I often follow your links, but I really have had nothing to add. Sometimes I disagree with things you say (your high regard for Dr. Amen comes to mind), but I figure people can read, research if they choose, and come to their own conclusions, and I prefer to use my time here on the most basic, practical kinds of help (get O2, do the D3, bust according to the protocols, etc.). It's been said a thousand times here -- this awful condition inspires all kinds of searches, and each person's should be respected. This place was founded by people whose idea, busting, was mercilessly crapped on, and the D3 regimen was ridiculed when it was first put forward and for a long time after. (As jon' said, if you want to see crapping, take a look at the board from which this one was spun off, clusterheadaches.com.)
  11. @Theresa, if this isn't overtaxing your patience . . . It seems he tried busting at least once or twice with satisfactory success. Is that accurate? And you had mentioned possibly starting the D3 regimen . . . did he do that? Is he taking other meds? I'm just trying to get a sense of the full context. BTW, I added this thread to the post on "Basic Non-Busting Information" in the CB Files section. Since it says that post has more than 2,000 views, putting the info there might increase the numbers who see it.
  12. Thank you for everything about this post -- the very act of posting it, of course, but also the nice clarity about context and specifically what your finance is taking! If you put Boswellia into the search bar (top right of every page), you'll see some other related discussions that might be valuable.
  13. I'm sure I should know this, but what video are you referring to? (I've been here 11 years, and I admit that I haven't kept up outside this forum, even with things at this site.) As others have already said, there's a lot of possible help here, and if you feel like it, you might tell us how you are treating your CH now. It's possible if you skim through this file, it might have something new for you. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  14. You don't have to use mushrooms. Rivea corymbosa seeds, which are highly effective (generally just as effective as shrooms), can be legally purchased and possessed in most US states. They are very very easily "processed" into the useful substance. It is unlawful to consume that substance. I see you have made more than a few posts here, so maybe you have already discussed what your family members are doing for their CH -- oxygen, D3, etc. If not, let's talk about that, too.
  15. All the usual questions seem to be in order. Do you have oxygen? Have you started the D3 regimen? Do you know about busting? What are you using to prevent, and what to abort? Do you know what your triggers are (if you have any)? Have you tried any of the new meds (Emgality, Aimovig...)? . . . Those kinds of things. For a big overview that might have some helpful stuff in it, I will refer you here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There's a section on busting at the end of that file, so if you get tired of reading, be sure to look at that.
  16. @Anthobob, thank you for letting us know about your experiences! That information helps a lot. Yes to all that. Busting basics are listed under the blue "New Users . . . " banner at the top of each page. An example of something else you might want to learn about is the Vitamin D3 regimen that has helped virtually everyone who has seriously undertaken it. I think the latest version is here, but I always feel like there are new wrinkles that might not be reflected there: https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people The search bar at the top right of the page can sometimes be helpful, but if you start a thread you'll get more direct advice.
  17. Completely respecting your reluctance, and I feel like you're not a person to be led somewhere you don't want to go. So just FYI . . . There is often a misunderstanding that a "trip" is part of the treatment. It isn't. It's just a side effect, and as Jeebs said somewhere in a thread like this one, RC seeds at therapeutic doses are virtually guaranteed to have zero psychedelic effects. It is completely legal to buy and possess them in California. Preparation is extremely simple. Consuming them is unlawful. You can start at a very low dose. There was a time when RC seeds were considered a better busting agent than MM, but MM gets all the media attention, and many people here seem to think it and L are the big hammers. Seeds still might be considered better than MM (because their structure is closer to LSD). This is the original post on the topic: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/?tab=comments#comment-8326 This covers a lot of bases: https://clusterbusters.org/forums/topic/2353-moxiegirls-seed-recipe/?tab=comments#comment-29101 Blah blah blah here: https://clusterbusters.org/forums/topic/6816-number-of-rc-seeds-to-take-some-thoughts/ There are some small contradictions among these files, but if you start a thread in one of the protected boards I'm sure those can be ironed out.
  18. The only carry-on oxygen allowed on US flights is a portable oxygen concentrator. Battery-powered, I don't think they go much higher than 6 - maybe 8 lpm. A lot of hoops to jump through for that -- doctor's letter, advance notice to the airline . . . Policies vary airline to airline. You can rent them for travel. I don't think the airline, at least on a domestic flight, will provide you anything more powerful than that to treat an attack. You can carry on empty cylinders or check them in baggage. You can have cylinders available to you at places you go to, through your O2 supplier or if not, through other suppliers. Of course, you can bring abortive pharma meds on board, and energy drinks (I think they usually sell Red Bull). Many people here have reported success with a SPUT (small piece/(amount) under the tongue) of seeds or M. I suppose maybe L would work, too. I feel like (though this just might be the way it seemed to me) not many years ago, a flight for someone in cycle seemed to practically guarantee getting hit. Now it seems less certain. As I say, that might just be how I was reading posts. Similarly, I don't think there's much risk of an attack for someone who is definitely out of cycle -- but again, people will correct me if I am wrong about that.
  19. I would check with your French oxygen supplier and see whether they can arrange O2 in the US, at least temporarily. I know that some companies will do that for people with US prescriptions traveling outside the US. As Freud says, you might want to get welding oxygen, which is used by some percentage of people with CH. Since you probably never have had to look into that, here's is a link to a post about welding O2. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/ (There's info there about regulators and masks, too.) If he has some written documentation that he has CH (ideally, in English), it might be possible to go to an urgent care place in the US and get an O2 prescription. Certainly it seems that would be feasible with a "regular" doctor or a neurologist at a headache center. Once you have the prescription, as Freud says, you can usually get O2 and self-pay without insurance coverage. One quibble with Freud -- I don't think you can get a filled welding tank, or any large tank, at Harbor Freight. I could be wrong about that as a generalization -- it was true of the two HF stores I went to. But wherever you end up there are likely to be welding supply stores and places like Home Depot that rent and refill tanks. Finally . . . You might take a look around this board for information about the Vitamin D3 regimen. It might not be familiar to you/him, and it has been very beneficial for large numbers of people. The basics are in here, starting on the fifth page (the second page 2): https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Others can fill you in on nuances. This thread seems to cover a lot of the bases: https://clusterbusters.org/forums/topic/7417-ditch-the-benadryl/?tab=comments#comment-71582
  20. CHfather


    Juss, When I first joined this board, almost exactly eleven years ago, I was desperate to help my daughter (the person in my family who has CH). That's why I picked the screen name that I have. There was a guy who was furious with me, and let me know that in a very harsh PM, because he thought I was trying to make myself sound like something special, I guess like the "father" of CB or something. Farthest thing from my mind, but he wasn't having it. (He was generous enough to write me an apology, a few years later, for that and some other irritations he had with me. I have always been touched by that decency on his part (Brian, if you're listening. . . )) I mention this because I think you might have me confused with the guy who is indeed the "father" of this board, Bob Wold, whose screen name is Psiloscribe, and who perhaps is a genius in terms of knowing things about CH. I have no knowledge about Botox, and don't think I have posted anything about Botox, except maybe to point someone to the research here and there. If I were to need anything to convince myself that I am not a genius, it would be your posts, which I ponder from time to time, not only because of their content, which I generally can't grasp (but which I am glad to see that others, such as Bosco', Shaun', Jeebs, and jon' are learning from, so they can help teach me/us), but because they illustrate to me that I only know "a lot" about the most conventional things related to CH -- oxygen, meds, RC seeds, and a couple of others -- and the advice I share is nowhere as sophisticated as it perhaps could be. I have been telling myself to go back and thoroughly read your posts and links so I could at least be a little smarter, and with some free time I hope to undertake that project. (You reminded me of one of my favorite lines from a novel I liked quite a lot, by John Lanchester. The narrator, who one slowly comes to realize is completely nuts, is very jealous of his brother, who many consider to be a genius. The narrator says, "I myself have always disliked being called a 'genius.' It is fascinating to notice how quick people have been to intuit this aversion and avoid using the term."
  21. Just plain coffee has a more caffeine per ounce than a standard Monster drink. V-8 energy drinks (preferred by spiny) have about the same caffeine as a standard Monster. As far as I can tell, those V-8 energy drinks have no taurine. Some people find the energy drinks/shots yuckier than just coffee. If you think taurine is valuable (many do), you can take taurine pills along with the coffee. As jon' notes, there are huge variations in how much caffeine an "energy drink" or "energy shot" contains. In your 473ml (16 oz) Monster (if it's a standard one), you are getting 160mg of caffeine. An eight-ounce Starbucks Pike Place roast will also give you about 160mg of caffeine. (Coffee roasts also vary a lot.) So you are getting a lot of additional stuff in a standard Monster to account for the 16 ounces. A 2-ounce 5-Hour Energy has about 200mg of caffeine. You can see a thorough listing of caffeine content here: https://www.caffeineinformer.com/the-caffeine-database Like jon', I am puzzled that your pain level is so high when you are starting out on the O2, and I'm glad you're having success with the O2.
  22. CHfather


    NR', if you put the word Nurtec into the search bar at the top right of any page, you'll see what people here have said about it. No one reported having the success that your doctor's other patient had, for sure. It's important to recognize that mostly you are likely to see disappointments reported here, since people who have success are not particularly likely to come here to report it, so you're not getting the full picture. (In that regard, it's frustrating that some Nurtec threads tail off without closure, since it's impossible to know whether the treatment succeeded or not.) It's my understanding that Nurtec is an abortive medication to stop individual attacks (migraine attacks, since as you say it isn't an approved CH treatment). Is that how your doctor prescribed it (take it to stop an attack), or are you supposed to take it regularly as a preventive? Aside from that patient whose cycle is reported to have ended, as an abortive Nurtec seems to be not nearly as effective oxygen or triptans. My goodness, it is expensive! When you say "without insurance," if that means you have no insurance, that's one thing, but if you do have insurance but it won't cover it because it's not approved for CH, maybe you could try something like Emgality, which works in essentially the same way, on CGRP receptors, and is approved for CH. If you decide to go ahead with this purchase, you can get it for a little less using a coupon from at goodrx.com. Can we assume that you are using all the standard CH treatments -- oxygen, D3 regimen, etc?
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