CHfather

More than a few people have been successful. I don't know how many are chronic. It is a rough go, though, because "headache" conditions generally aren't included as a disability category. I think in most of the successful cases there was an original denial of the claim followed by at least one appeal. The "good" part is that you don't pay the lawyer unless you win (except for fees for making copies, etc.), but that's also potentially a "bad" part, in that the attorney doesn't have a strong incentive to work on a case that's got a low chance of success. I remember a couple of people saying that it was better working with a local lawyer than with a lawyer from one of the big national disability firms. And I remember someone saying that unless you have a gigantic file of doctor visits and medications tried, you probably shouldn't bother. You can put the word disability in the search bar (top right of every page), or some other relevant search term, and see quite a bit for yourself.

[Edit: I was writing this when Capt. K' posted his/her response, which really says it all.] I have four things to say about this, none of which is directly responsive to your question: 1. Rizatriptan (Maxalt) is not really a CH medicine. I think some people have had relief from CH with this drug, but it isn't first line. Here's what the Mayo Clinic says about rizatriptan: "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches." From another source: "Maxalt and Maxalt-MLT are not approved for the treatment or prevention of cluster headaches." There might be a reason you were given this instead of triptans that are more effective for CH. 2. When you say that a 10mg pill will abort a CH attack within 30 minutes, I assume you are describing your experience. For a pill, that's pretty good, 30 minutes, but it's not nearly as good as oxygen or even other kinds of triptans. 3. If you are aborting attacks frequently with triptans, it will put you at risk of triptan overuse headaches and a bunch of other side effects. Not recommended. 4. In general, the best way to find out what others' experience has been with something (a medication, in this case) is to type it into the search bar at the top right of the page. That gives you more posts to look at than the number of responses you are likely to get from a single post. I'm not saying don't ask questions, just saying that in a case like this you will probably get more info from the search function.

I think MR. DUX was one of the guys on that Dynasty TV show with the rednecks from a few years back.

There have been more than a few people here over the years who have had trouble looking at computer screens and phones. One discussion of blue light blockers and other strategies is here: https://clusterbusters.org/forums/topic/6075-computer-help/?tab=comments#comment-60389. A brief discussion of the f.lux app for reducing light emission from monitors is here: https://clusterbusters.org/forums/topic/3627-tricks-for-reducing-light-emission-from-monitor/?tab=comments#comment-41856 That discussion is here: https://clusterbusters.org/forums/topic/8739-glasses-to-treat-ch/page/2/?tab=comments#comment-78997

IV caffeine?

I can't tell you about the cost, which varies greatly not only by region but also depending on what you get (how many tanks of what size). Insurance should cover most or all of it. Some people have a hard time getting their insurance to cover it; others don't. I don't think anyone would disagree that whatever the cost, it's worth it. Yes, you start it right away as a hit is coming, and you continue for some minutes after the attack has been aborted. The sooner you start, the quicker/easier the abort is going to be. >>>Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well)<<< Plenty! If by "docs" in your post, you mean "doctors," no way. Won't help you at all. You get O2 based on a doctor's prescription from a medical supply company. Maybe that company will have someone to give you advice, but probably not. It's not complicated in its essence, but there are lots of things you can do to get aborts faster (related to, for example, getting some caffeine into you as you start on the O2; using an effective breathing strategy; having the right flow rate; and having the right mask and other equipment). When you're ready, it can be discussed more. Many documents here that you can read (e.g., https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/ and https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ and the "Oxygen" section here https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) and lots of youtube videos you can see by searching [oxygen cluster headaches]. In those videos, Bill MIngus is particularly helpful, but you might find others you like more.

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.