CHfather

There has been some study of CH symptoms developing after head trauma. One study said "CH patients seem to incur more frequent traumatic head injuries during their lifetimes when compared to migraine controls and the general population." (I can only see the abstract of this one, and it's not clear whether the authors think that these more frequent injuries directly cause the CH.)(https://link.springer.com/article/10.1007/s11916-012-0248-0) This one -- https://jnnp.bmj.com/content/91/6/572 -- is more thorough, and it seems like CH directly following a traumatic head injury can vary somewhat from "classical" CH. I have no idea how you might fit in this picture, and I think you want to treat what you have as "regular" CH would be treated, but I figure it's worth knowing that this study exists.

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/

Way too kind, Jeebs. Very deeply appreciated.

At the top of each page there is an envelope icon. Click on that and then type xxx in the "To" line.

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"].

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'.

Yes.

"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.

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.

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.

That news warms my holidays so much! Wow.

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.

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.)

@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.

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.

Yes, this is true. You just turn the knob on the regulator until you get the flow you want. This quickly becomes easy to do. It's the other questions I couldn't answer. If you were in the US, I'd say it's all going to be fine; I just don't know whether for some reason Indian tanks or regulators might be different from US ones.

I'm sorry, Vipul. I don't know the answers to any of those questions.

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/

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.

@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.

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.

I think opinions vary about this. There's no doubt that triptan overuse will cause rebounds and perhaps extend cycles or make attacks worse. On the other hand, if you need one for a "breakthrough" attack where for some reason O2 isn't doing the job, I wouldn't hesitate. That's particularly true if you are injecting only 2 or 3 mg instead of the 6 that are in the standard injector. See this thread: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

!!!!!!!!!!

This isn't clear to me. The bag (the smaller one that you had before) should fill up fairly quickly when you turn on the O2. Then when you inhale, the bag should empty, or at least mostly empty. Then it should fill up again when you stop inhaling and are exhaling. The flow rate determines how fast the bag fills -- the higher the lpm, the faster the bag fills. That is the only relevant aspect of flow rate -- it doesn't affect how much O2 you take in when you inhale. If the bag does not fill fast enough that it is ready for your next inhalation, you need a higher flow rate. It is called a "reservoir bag," because it holds the O2 until you inhale it. Having a larger bag on there means that you have extra O2 for each inhale, which is fine, but you want to start inhaling as soon as there's enough O2 for you to take a full, deep breath, and not wait for a very large bag to fill. I'm just not really comprehending what you mean by "even at 10 lpm I get enough oxygen for 10 to 15 breaths." O2 virtually always works. For some people, it is less effective when the pressure in the tank is low (when there is less O2 in the tank). There might be times when it doesn't work, or takes longer to work, but the value of using O2 doesn't really decay over time. Yes, you will use less O2 when you find the breathing strategy that works best for you -- and there is also some evidence that it is just less effective in the first few uses than it becomes after that.

That one (the Flamenco brand) is a welding regulator. LPM is not an issue for welding, so the gauges don't show LPM and the product specifications wouldn't include it. The good thing is that you have a very wide range of lpm available to you from a welding regulator, the very small challenge is that you have to fiddle with the controls to find the lpm that works best for you (rather than just clicking an an lpm setting as you can do with a medical regulator. As I say, this is a very small issue that people quickly adjust to. The first link I provided in my post above is to a medical O2 regulator -- you can see that they look quite different. I think most of us would suggest that a welding regulator is the way to go -- as long as it fits onto your tank. That's not an issue in the US and many other other places, where both medical regulators for larger tanks and welding regulators for all tanks are CGA 540. I would assume the same would be true in India. I hope you have read that oxygen section in that document I linked you to. Some tips there about strategies and mask preparation that might speed up your aborts.