Talk:Cluster headache

Cluster headache attack itself is not life-threatening

This is false as people who suffer from cluster headaches have been known to commit suicide to stop the intense pain. Therefore, a cluster headache attack could be considered life threatening as it could cause a reasonable person to commit suicide that otherwise would have not ended their life if they did not suffer from such a condition. Source: http://umm.edu/health/medical/reports/articles/headaches-cluster Quote: More than half (55%) of respondents reported experiencing suicidal thoughts. — Preceding unsigned comment added by 173.95.181.125 (talk) 08:16, 29 November 2013 (UTC)

The keyword here is "itself". A CH attack itself is not life-threatening. Suicidal thoughts and acting out on those are a possible indirect result of the attack. — al-Shimoni (talk) 04:50, 19 September 2015 (UTC)

Cluster headache can be fatal if not managed properly. If the patient forgetfully eat some food items that increase the severity or frequency of attacks during the cluster his condition can aggravate seriously as he can not sleep between attacks. Sleep itself will trigger more attacks. Only very high doses of steroids like 2mg/kg/d may help in such situation. The tired, sleep deprived patient may need hospitalization. I think of this as Status of cluster headache. I find, as a patient and physician, the most serious food items that looks benign are fish, chocolates and bananas. Ezzsakr (talk) 13:16, 21 March 2023 (UTC)

Then this should be clearly noted. People use Wikipedia as a first-line medical source whether or not that is right, and this is absolutely a relevant and somewhat unique feature of this disease, wherever the information is put categorically.

Medical sourcing and content guidelines

Please review WP:MEDRS and WP:MEDMOS, including WP:MEDMOS#Sections. Wikipedia:Wikipedia Signpost/2008-06-30/Dispatches helps understand how to apply Wikipedia's medical sourcing guidelines, and where/how to find secondary review sources. SandyGeorgia (Talk) 17:54, 2 January 2014 (UTC)

Primary studies

This article is rife with primary studies: see WP:UNDUE, WP:RECENTISM, WP:NOT (news or a support forum), and WP:MEDRS. I've removed this text for discussion. SandyGeorgia (Talk) 19:23, 2 January 2014 (UTC)

In 2012-2013, in an effort to reduce the amount of imaging, number of consults and number of admissions related to headache whilst maintaining pain relief for patients, pain physicians from the Cleveland clinic are working to refine an algorithm for use in Emergency Department (ED) headache presentations. Details of a report on implementation of the algorithm were presented at the 2013 International Headache Congress and showed an 82% reduction in the use of opioids in Headache presentations in ED. “We were astonished at how much we were able to diminish the use of opiates,” - lead investigator Cynthia Bamford, MD. Further validation of the algorithm will show whether it will hold up in various ED settings.

"Suicide" headache

Some of the sourcing in this article is extremely poor. This is a marginal review (appears to be only a partial review combined with a study on a small sample); nonetheless,

• Torelli, P; Manzoni, GC (2002). type=Review "What predicts evolution from episodic to chronic cluster headache?". Current pain and headache reports. 6 (1): 65–70. doi:10.1007/s11916-002-0026-5. PMID 11749880. {{cite journal}}: Check |url= value (help); Cite has empty unknown parameter: |1= (help); Missing pipe in: |url= (help)

mentions "suicide" headache. SandyGeorgia (Talk) 19:52, 2 January 2014 (UTC)

"Suicide disease" is also applied to trigeminal neuralgia... and the sourcing there for this term is poor too. It is known that a tiny fraction of patients with chronic and severe craniofacial pain conditions will commit suicide, but I would not say that they are commonly referred to as suicide headache or disease, at least in medical publications. Lesion (talk) 21:21, 2 January 2014 (UTC)

Thanks Lesion. SandyGeorgia (Talk) 21:52, 2 January 2014 (UTC)

I'm not making a case for "suicide headache," which surely is not used much in medical literature (I've seen it one or two places, but it's not worth looking for), but in response to Lesion's post, I'd point out that in the largest study to date of CH patients, involving surveying 1134 people, 55% of the respondents said they had considered suicide, 2% said they had attempted it, and 50% had engaged in self-injurious behavior during a CH attack. (Rozen, T., MD, and Fishman, R. "Cluster Headache in the United States of America: Demographics, Clinical Characteristics, Triggers, Suicidality, and Personal Burden," published in Headache in 2011). Anyone in the CH community has known multiple people who have killed themselves. I apologize for "debating" a settled point here, and I won't do it again I promise, but I don't think these are the "tiny fractions" that Lesion is suggesting. Chfather (talk) 01:52, 4 January 2014 (UTC)

Debate is healthy, please feel free. Here is another source which mentions it:

“ The severity of the pain has earned it the sobriquet “suicide headache,” although in our experience this is a rare occurrence in this exceptional patient group. ”

-From the Nesbitt 2012 review, already used in the article. So yes we should should mention it imo. Not sure how others feel. Lesion (talk) 01:59, 4 January 2014 (UTC)

If it's needed, here's an additional usage from an article already cited in the entry (Beck, et al, "Management of Cluster Headache"): "Called “suicide headache” because of its severity . . ." Chfather (talk) 02:16, 6 January 2014 (UTC)

This needs to be more explicitly stated in the article, that the pain of cluster headaches can and DOES lead to suicide attempts and completion among sufferers. I have tried to get this put in the article multiple times and despite including sources-- *good* sources and sometimes upwards of five or six for two sentences-- it never sticks. Why, I really don't know, and once again I must stress I feel that this is of utmost importance. I have a couple more sources than just the ones mentioned here but the aforementioned study is indeed the largest that discusses it. The psychological component of this disease is a huge part of management and prognosis, especially with regards to self-harm and suicide, and it's barely even mentioned in the article. I don't have an account so I'm not sure how to sign this. Guest?

Moved the content here [1]. I was okay where it was in the symptoms section under pain.

What other high quality sources do you have? Doc James (talk · contribs · email) 06:20, 14 November 2014 (UTC)

^^Great, at least that's something. I went in and fixed two minor typos in the sentence you inserted but it still reads exactly the same. Is there a better place (or any place at all) to attach some of the sources I have on this issue besides the article itself? I may have lost access to some of them as a result of no longer having full(er) access to JSTOR or PubMed-- just can't remember where they all came from-- but I'm fairly certain that I still have at least a few that discuss this. In fact, the largest study that examined this problem at least partially isn't even the one currently cited in the article. It was mentioned above, "Rozen, T., MD, and Fishman, R. "Cluster Headache in the United States of America: Demographics, Clinical Characteristics, Triggers, Suicidality, and Personal Burden," published in Headache in 2011." There are others, so let me know what I can do. (Same guest as above)

We typically only use journal articles marked as "reviews" per WP:MEDRS. One can limit their search to reviews. This article [2] is a primary source. Other good sources are position statements. Happy to discuss other sources. Doc James (talk · contribs · email) 02:32, 18 November 2014 (UTC)

Redundant, repetitive and off-topic prose

This article says the same things over and over and over, often based on primary sources, looking like individual researchers wanted to work their links in. I'm reducing some of the redundant prose, but by no means all of it; that should be done better when the article is thoroughly rewritten to reflect more recent secondary reviews-- since the article is so poorly sourced, it's hardly worth it at this stage to clean up all the prose. SandyGeorgia (Talk) 21:52, 2 January 2014 (UTC)

There are 2 cochrane reviews, one is already used, here is the other: [3]. Lesion (talk) 23:07, 2 January 2014 (UTC)

I put that Cochrane review in, but expansion needed. SandyGeorgia (Talk) 03:03, 3 January 2014 (UTC)

• Suggest structure the features of cluster headache according to Socrates (pain assessment), see for example Atypical facial pain for how this looks. Lesion (talk) 23:34, 2 January 2014 (UTC)

• I'm typically not a fan of listified prose, and another problem I have with the table at Atypical_facial_pain#Signs_and_symptoms is that the citations are disassociated from the text, and there's a whole long list of citations above the table where it's not apparent what is citing what. I guess here, whatever works and whatever others want, but I don't think something like at AFP would ever get through FAC (just saying), where prose is preferred to lists and tables, and citations should be attached to the text they verify. Best, SandyGeorgia (Talk) 00:01, 3 January 2014 (UTC)

• Yes the table needs inline citation. That is a problem that needs fixing. It is not really MEDMOS to use socrates, in fact I recall there is something in there about not using mnemonics at all, but I think it is a nice structure to apply to the signs and symptoms section for conditions characterized mainly by pain. Lesion (talk) 00:13, 3 January 2014 (UTC)

Back to psilo/LSD

I would really like to improve the discussion that is there now, but I want to do it right. Maybe you can advise me. My concerns relate to these two elements: 1. Vasoconstrictors such as ergot compounds are sometimes used immediately at onset of attack. Cafergot, a vasoconstrictor combination of caffeine and ergot, has been demonstrated in some cases to abort cluster headaches within 40 minutes of ingestion. BOL (2-bromo lysergic acid diethylamide), a non-psychedelic form of the ergot-derived psychedelic LSD, has shown promise in the treatment of cluster headaches.[unreliable medical source?][48] 2. Some isolated case reports suggest that ingesting LSD, psilocybin or cannabis can reduce cluster headache pain and interrupt cluster headache cycles.[49]

Re #1, there really is no relationship between cafergot and BOL-148, except that they both contain ergots (as do some other CH meds mentioned elsewhere in the article). So, I would make a new topic. Re BOL-148, I can edit to provide a link to a peer-reviewed journal, Cephalagia, which published the results of a small trial of BOL-148 for people with CH. But I think that's a "primary source." Would it allow for removing the "unreliable medical source" note that there's now (deservedly so)? BOL-148 is different from cafergot, among other things because it seems to be not just an abortive (and not just an generally ineffectual abortive, as cafergot is) but also a possible preventive. For people with CH, the difference between maybe aborting an attack in 40 minutes and preventing attacks altogether is enormous.

And the fact that BOL-148 works is evidence that the next part -- about LSD, etc. -- is not some whackjobs taking drugs to escape their pain. BOL-148 works because it has LSD in it. So, Re #2. I don't know what "some isolated care reports" means. As far as I know, there is exactly one report of cannabis helping someone, whereas research conducted by medical professionals has shown hundreds of cases in which CH patients receive relief from psilocybin, LSA, and LSA. Yes, these are anecdotal self-reports collected by those medical professionals, and not clinical trials, but since the substances are scheduled, there's no more than that that can be done. I could cite several such reports (and I note that LSA, which is not mentioned in the current text, is the subject of some of them), but again I fear that this will be removed as "primary sources."

There are probably thousands of CH sufferers using LSA, LSD, and psilocybin to treat CH, with no lasting side effects (LSA, for that matter, is effective even without short-term psychedelic "side effects"). I understand someone's reluctance to give this treatment what I think of as its proper attention here -- it's not medically proven; it might sound weird or scary to some people; and the substances are scheduled. At the same time, it is saving lives every day.

If you're going to delete any edits I make, I guess I just won't bother doing so. But if there's a way to provide this information that is consistent with Wikipedia's policies, I would be happy to take a shot at it.~~chfather~~ — Preceding unsigned comment added by Chfather (talk • contribs) 00:34, 3 January 2014 (UTC)

There are 2 main issues when writing about medical treatments. First is to use a good source, (see: WP:MEDRS). Essentially, a fairly recent (i.e. last 5-10 years) review paper from a peer review journal (ideally a systematic review), OR a mainstream medical textbook. Mistake many people make is to use animal studies or human studies. Second main issue to make sure that the Wikipedia article reflects how a medical condition is treated in the real world. For example, if 95% of doctors use drug A to treat cluster headache in reality, we should not talk excessively about drugs B-Z. Hope that helps. Kind regards, Lesion (talk) 00:41, 3 January 2014 (UTC)

Hi, Chfather; Lesion's explanation is a (cool) way of explaining Wikipedia's due weight policy.

Another factor in writing for Wikipedia is that Wikipedia text must be verifiable to and rely on secondary sources; we can't engage in original research by analyzing or reporting on primary research studies that haven't been reviewed by secondary sources (that is, independent from the researchers who did the studies)-- our medical sourcing guidelines prefer secondary reviews to primary studies. Primary studies are individual case reports, trials, studies whether controlled or not, animal studies, surveys, and other studies that-- even if published in peer-reviewed journals-- haven't been the subject of a secondary review from independent authors examining their conclusions.

In addition to that, there are a lot of things that Wikipedia is not-- we aren't news, we aren't recent, we aren't for support-- a whole lot of things. We should only be reporting and giving due weight to what other secondary sources have already stated, in encyclopedic tone. An encyclopedia doesn't strive to be current in the same way the daily news does; it strives for long-term accuracy.

To that end, I have gone through and flagged numerous primary sources and laypress reports that don't meet our sourcing requirements, shouldn't have been in the article, and need to be replaced with secondary reviews. I've also removed some text that simply shouldn't be here at all without secondary sources (treatment issues, etc), and flagged the secondary reviews now (correctly) in the article by adding the word "Review" to their citations.

On the topic of psilo/LSD, there is mention of it in one secondary review (PMID 21352222), and that is in the article now; unless that review has more to say on the topic, or unless other secondary reviews surface, it won't be productive for you to write from laypress or primary sources on the topic of psilo/LSD.

This article was (is) actually in pretty bad shape, making use of very old sources, including a lot of repetitive text and editorializing; I've only made a first pass at cleanup, and some other editors will probably go through soon and try to beef it up. It will benefit everyone for the article to be as good as it can be, as it's not close now!

If you want to know more about how to research for writing medical content on Wikipedia, Wikipedia:Wikipedia Signpost/2008-06-30/Dispatches explains how to locate secondary reviews in PubMed. Regards, SandyGeorgia (Talk) 03:50, 3 January 2014 (UTC)

I don't know how to reply to your kind replies, so I hope this isn't a mess. I just wanted to thank you for your help, and say that I do think that the current edits have made the entry much better (regardless of how I feel about the diminished place of psychedelics as treatments). I might try an edit at some point, if I think I can do that within the rules and still add value, and I will now apologize in advance if it turns out to be something you have to take down. Chfather (talk) 06:07, 3 January 2014 (UTC)

What was in the article before was uncited; if you can propose text here on talk, based on the secondary review PMID 21352222, we can discuss whether that source has been given due weight. SandyGeorgia (Talk) 07:33, 3 January 2014 (UTC)

Well, let me see if I can do it correctly. The second sentence of the uncited text says >>A self-reported interview of 53 cluster headache sufferers taking LSD or Psilocybin was conducted by doctors R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr.[citation needed]<< The citation to Sewell et al is Sewell RA, Halpern JH, Pope HG. Response of cluster headache to psilocybin and LSD. Neurology. 2006;66:1920–1922. These studies are also referred to in what I think is a secondary source -- Christina Sun-Edelstein, MD, Alexander Mauskop, MD “Alternative Headache Treatments: Nutraceuticals, Behavioral and Physical Treatments.” Headache. 2011;51(3):469-483 -- where the authors write (among other things): “Twenty-two of 26 psilocybin users reported that psilocybin aborted attacks while 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination. In addition, 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension, meaning that the next expected cluster period was delayed or prevented. These results are interesting . . . because no other medication has been reported to terminate a cluster period. Furthermore, the drugs were effective at subhallucinogenic doses and effective treatment required very few doses of either drug.” I believe the data here would support (and potentially expand) the second citationless entry (but I don't know how to get back to that original material now to look at it!). Would these citations be acceptable? Would returning some version (probably shortened) of the earlier uncited text to this article be acceptable if similar cites could be found? Maybe I'm asking too much -- maybe I just need to know if the cites would be okay, and then, if they would be, offer my proposed new text. Again, THANK YOU. (For what it's worth, I am a financial contributor to Wikipedia, but I know I am taxing your time, if not also your patience.) Chfather (talk) 16:10, 3 January 2014 (UTC)

Apologies if I'm not putting this in the correct place. I'm just learning method and policy for editing wikipedia. The Dr's Sewell, Halpern and Pope study was cited before someone deleted it. When it was added back the citations didn't come back. As a separate question regarding wikipedia policy: Is there a way to have a separate Cluster Headache article that isn't in the medical documentation category, and therefore information that's not peer reviewed could be added (by primary study instead of secondary?). It seems some life saving information could easily be left out that a sufferer could find life saving. Ie, how sufferers use O2 to stop individual attacks quicker (that doctors don't even know, nor would any study ever be created with secondary review as there are many different ways to use O2. Some ways are nearly useless, like just breathing normally. Many doctors don't even write the scripts correctly for non rebreather mask, LPM etc. Sorry don't mean to be too wordy. Just trying to figure out how to get important (but not peer reviewed) information available to those that find Wikipedia in their online search. Thanks in advance, Jeff — Preceding unsigned comment added by 75.115.201.35 (talk) 18:50, 6 January 2014 (UTC)

Hi, Jeff ... you can sign your entries by putting four tildes ( ~~~~ ) after them.

Whether cited to Sewell or not, Sewell is a primary source; we need secondary reviews of it, and on the reading I've done in the last few days (I am not fully caught up yet, still getting the sources and reading through them), we do not have a good review of that study, raising due weight issues.

As to a separate article that is not "medical", it is not the article that matters, it's the content. Medical and health-related content anywhere on Wikipedia needs to meet medical sourcing guidelines. I understand your concern, but it is not Wikipedia's role to advocate, rather to state what secondary sources have already stated in reliable sources. SandyGeorgia (Talk) 18:57, 6 January 2014 (UTC)

Sorry Jeff, absolutely not. Wikipedia content (particularly medical content) has to conform to policy with regards to sourcing. This isn't optional, and if one is writing about potentially 'life saving' content, the need for proper sourcing is greater, not less. You should note that the Wikipedia:General disclaimer makes it entirely clear that content cannot be relied on - and accordingly, if one is dealing with medical matters of such significance, the only advice Wikipedia should be giving to individuals with CH is that they should consult with a qualified medical professional. AndyTheGrump (talk) 19:02, 6 January 2014 (UTC)

SandyGeorgia, Thanks for the tildes info I was just coming back to add to my post when I saw the responses. Appreciate everyone's patience. AndyTheGrump, I definitely understand the reason and need for primary studies in regards to medical information. No one would want any old yahoo putting any cure they found themselves in Wikipedia (I've seen some crazy and useless "cures" people come up with and completely agree with you). On the other hand the only reason there aren't secondary studies on Psylo is because most Dr's don't want to risk their medical license or medical standing by discussing something that's not legal in most places. On the other hand the back door treatment for many with Cluster Headaches (that aren't treatable by "Dr Approved" methods) really works significantly better (per primary study) than anything that's scriptable by the Docs. As an example the first line treatment most doctors prescribe is Verapamil (off label, because yes, it's not approved for CH treatment), but it's only approx 5% effective. I guess it's a catch 22 that psylo and LSD fall into with CH, which is why I'm fishing for alternative ways to provide the information in a Wikipedia approved manner (referencing the few medical studies on it's effectiveness). Another example; cutting on someone's brain is barbaric (but doctor approved) as compared to taking a small dose of a non Dr approved substance that in the majority of patients stops the attacks. Thanks for the feedback, Jeff 75.115.201.35 (talk) 19:30, 6 January 2014 (UTC)

I didn't realize I wasn't signed in until that last post (75.115.201.35 (talk)) is me Thanks again (I'm learning :)) Jeff ThatHurtsMyHead (talk) 19:34, 6 January 2014 (UTC)

Hi again, Jeff ... have a look at WP:RGW. (You can properly thread your posts by entering increasing numbers of colons before them.) SandyGeorgia (Talk) 19:36, 6 January 2014 (UTC)

Is this a secondary source? It's an article from Medscape Medical News discussing some psilocybin experiments, and in it a doctor who was not involved in that research (a psychiatry professor at Harbor-UCLA Medical Center) says, "Given that psilocybin and other psychedelics may reduce symptoms of cluster headaches, this is interesting because cluster headaches have been associated with increased hypothalamic cortical blood flow. Perhaps we have new evidence here for the underlying neurobiologic substrate of 2 subjective effects of psilocybin: the improvement of mood, and the alleviation of cluster headaches." (The quote appears on page 2 here: http://www.medscape.com/viewarticle/757387)Chfather (talk) 19:44, 6 January 2014 (UTC)

That is a news report of a primary study (see WP:MEDRS and also WP:RECENTISM and WP:NOT (news).) These are reviews:

• Vollenweider FX, Kometer M. (2010). "The neurobiology of psychedelic drugs: implications for the treatment of mood disorders". Nature Reviews Neuroscience 11 (9): 642–51. doi:10.1038/nrn2884. PMID 20717121.

• Correction: I now have the full text, and Vollenweider is not a review-- it is an opinion piece in a journal of reviews. SandyGeorgia (Talk) 16:25, 11 January 2014 (UTC)

• Halker R, Vargas B, Dodick DW. (2010). "Cluster headache: diagnosis and treatment". Seminars in Neurology 30 (2): 175–85. doi:10.1055/s-0030-1249226. PMID 20352587.

As an example, Halker contains one line, saying basically that there has been a study, hence concerns that even our current text is giving undue weight. SandyGeorgia (Talk) 19:52, 6 January 2014 (UTC)

Corrected again, I misspoke, Halker does not mention psilocybin. It seem the only review mentioning psilo is Sun-Edelstein, which is specific to alternative treatments, and outdated for example on oxygen, as discussed below. SandyGeorgia (Talk) 16:37, 11 January 2014 (UTC)

I can find you some substantive secondary sources mentioning psilo and LSD, but they all refer, as Sun-Edelstein does, to the 2006 report by Sewell, Halpern, and Post, and they all say that there is not enough real research evidence, and they often say something defensive about even discussing these taboo substances. Obviously, no doctor in the US is going to prescribe illegal substances, and very, very few are even going to mention them to their patients. The strongest medical case for mentioning hallucinogens in this Wikipedia entry is made (I think) by the 2013 article by Dr. Brian McGeeney in Headache, "Cannabinoids and Hallucinogens for Headache," where he reviews the history of those treatments and, in one section, discusses CH (http://www.medscape.com/viewarticle/781651_1). I think that there is also some kind of ethical case or even scientific case to be made for mentioning them somewhere, if only because their (unproven) efficacy appears to be far greater than that of any other preventive (as the Sun-Edelstein article says: "These results are interesting . . . because no other medication has been reported to terminate a cluster period. Furthermore, the drugs were effective at subhallucinogenic doses and effective treatment required very few doses of either drug”). It might be presently unrealistic to conduct medically-persuasive trials of these substances, but that is not the same as completely dismissing their anecdotal efficacy or their status as an "interesting" potential future source of treatment for this terrible condition. The small open-label clinical trial of BOL-148 (which I mentioned above) is further evidence of potential efficacy -- because BOL-148 is simply non-hallucinogenic LSD. A big dose of LSD, but LSD nonetheless. I would think that Wikipedia's readers might want to/deserve to know about this interesting potential treatment, even if it is clearly framed as a currently-unavailable, currently-unlawful option. Maybe McGeeney's article will be good enough to earn a mention for hallucinogens, or maybe that plus the other secondary sources I could find would be enough, or maybe, as I say, there's a case for a different kind of mention. I really hope so, and I beg your continuing serious consideration of those possibilities. Chfather (talk) 22:44, 11 January 2014 (UTC)

Chfather, thank you for the lead to the article (see my post below, I will get hold of a journal-published copy of it), and please remember WP:NOT: Wikipedia is not news, not a crystal ball, not a publisher of original research, not a support group, and not a whole lot of other things. We publish what reliable secondary sources cover, and give due weight to text according to those sources. Also, just so you can understand some perspective, please read through MMR vaccine controversy (paying particular attention to the sections on "Media role" and "Disease outbreaks"-- Wikipedia was/is part of that "Media role" in that case). A couple of editors insisted back in 2006 thru 2007 that Wikipedia had to mention the dangers of vaccinating children that could lead to autism. Disease outbreaks occurred. People, and children, died. We have no obligation to bring forward information that is not based on secondary reliable sources. There are other internet forums more than happy and willing to pass out unsubstantiated medical content, and most citizens of the internet know where to find that kind of information. 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. When more studies are done, and when they are reviewed, then we can give more weight to this issue. SandyGeorgia (Talk) 23:37, 11 January 2014 (UTC)

Would moving this content to a section called "Research" be a reasonable compromise? Doc James (talk · contribs · email) (if I write on your page reply on mine) 22:51, 11 January 2014 (UTC)

Jmh649, I'm not sure yet, I'm waiting for an answer to my query to Jfdwolff (who can't get to it right away), and it would help if I had a copy of PMID 23278122 that Chfather mentions above (I'm not taking my medical content from Medscape :). But relative to broad overviews of cluster headache, it initially appears that we are giving undue weight to psilocybin, and that moving it to Research is a possibility. Adding something under treatment based on one study (that wasn't even a study, rather interviews) is problematic, specifically since no serious review of that work has yet surfaced. Sun-Edelstein and others pretty clearly mention that the results of one study are interesting in terms of what they say about underlying mechanism and potential future advances. SandyGeorgia (Talk) 23:23, 11 January 2014 (UTC)

On the McGeeney article (PMID 23278122), assuming Medscape has faithfully reproduced it, there is nothing there. It reviews a lot of history (but current reviews explain the methodological issues that plagued the older studies), and concludes: "There is no literature support for this regimen." And it mentions the Sewell 2006 survey, adding nothing of substance. I've spent hours reading and researching on this topic, and so far, it's just amounted to trying to get water from a rock-- there's nothing there except one survey/interview. SandyGeorgia (Talk) 23:49, 11 January 2014 (UTC)

Well, I appreciate your efforts and your thoughtfulness, including your note above to me. I'm out of ammo. If something could be included under "Research," I'd be pleased (and I understand that there's not much "research," either). Thank you. Chfather (talk) 00:14, 12 January 2014 (UTC)

I'd agree with Doc James and Chfather, if a mention under a "Research" section is possible would be good. Jeff ThatHurtsMyHead (talk) 14:04, 13 January 2014 (UTC)

the degree to which psilocybin as a treatment for CH's is marginalized in this article is a travesty. — Preceding unsigned comment added by 104.163.140.61 (talk) 14:51, 7 May 2022 (UTC)

Depersonalize

We should remove all names of experts and researchers, and their quotes. Suggest only keep name of the person who discovered it (1974, Ekbom according to one source). Lesion (talk) 04:24, 3 January 2014 (UTC)

Yes (unless we are directly quoting someone, in which case we need attribution). SandyGeorgia (Talk) 06:22, 3 January 2014 (UTC)

CH?

Is cluster headache not alternately referred to as CH? Because switching many of the uses of the phrase cluster headache to CH in the article would probably shave 5KB !! SandyGeorgia (Talk) 07:03, 3 January 2014 (UTC)

I don't think CH is commonly referred to as "CH," certainly not in the same way that multiple sclerosis is known as MS or tuberculosis as TB, but of course that's because cluster headaches aren't widely enough known to be shorthanded in that way by the general public (even though CH is as common among the US population as MS). I would suppose that as with any initialization, if you stated early in the piece that you were henceforward going to refer to cluster headache as CH, you could probably do that, but as I say, I don't think you'd be employing common usage. This usage, from the current entry, definitely seems wrong to me: "Restlessness (for example, pacing or rocking back and forth), photosensitivity, aversion to light (photophobia) or sensitivity to noise (phonophobia) may occur during a CH." "CH" is the condition; it is not properly used for individual headaches (which are called by people with CH "attacks" or "hits," since "headaches" is a ridiculous term to apply to them (medically proper though it may be)). Chfather (talk) 01:20, 6 January 2014 (UTC)

Emotive words

I noted that this article also uses "sufferer" in a few places. The MEDMOS discourages this, instead we should use more neutral wording like "persons with cluster headache". Lesion (talk) 01:39, 4 January 2014 (UTC)

Lesion, I was out all day, so got no Wiki work done, but I did have a chance to read through the article from my cell phone, and the prose is atrocious throughout. I will engage again tomorrow or Sunday, read both Cochrane reviews, and before anything else, work on some of the worst parts of the prose. Unless someone tells me not to, I will switch a lot of the repetitive "cluster headaches" to "CH". Still have to find time to deal with all the primary sources. Does anyone have a copy of the full text of the journal article referenced above by Chfather? SandyGeorgia (Talk) 02:00, 4 January 2014 (UTC)

>>The full text is here: http://www.medscape.com/viewarticle/738530 Chfather (talk) 01:00, 6 January 2014 (UTC)

Done for now-- ready for another pass from Lesion or Jmh649 or Anthonyhcole. SandyGeorgia (Talk) 16:02, 4 January 2014 (UTC)

I would like to do a general editing pass--not to mess with content but small edits in quite a few places that I think will add clarity. I guess I could just do that (?) . . . but is there a way to somehow do it offline so that you-all don't think I'm trying to willfully impose myself on the published page? For whatever it's worth, I'm a writer/editor by profession. — Preceding unsigned comment added by Chfather (talk • contribs) 01:10, 6 January 2014 (UTC)

There has certainly been a problem in here with prose redundancy and unencylopedic, over-emotive language. Separately, the clarification tag I put on nerve stimulators was removed. We do not have an article for that, so we need to either create one, find one, or tell our readers what they are. SandyGeorgia (Talk) 17:01, 6 January 2014 (UTC)

Updated prevention and treatment sections

I think that was the most dangerous stuff. We have inline tags so have removed the banners from the lead. Feel free to replace them if you feel strongly. Doc James (talk · contribs · email) (if I write on your page reply on mine) 12:06, 4 January 2014 (UTC)

Verapamil

Under "Prevention," the entry now states: >>The recommended first-line preventative therapy is verapamil, calcium channel blocker.[3][35] Despite its usefulness, only four percent of people with cluster headache report verapamil use.[5]<< I suppose that first sentence is supposed to say "a calcium channel blocker," but my concern is with the second sentence, which is using a 2005 report that was surely compiled in 2004 or earlier -- and although the specific 4% assertion is not cited in that report, it appears to come from even older sources, to judge from the nearby citations. The entry suggests that the 4 percent statistic is current, and there's no justification for that. I don't have more recent information, but the wording is nevertheless misleading. From anecdotal experience, I'd bet that verap is prescribed to at least 40-50 percent of diagnosed people in the US; how many continue using it, I wouldn't know.Chfather (talk) 02:30, 6 January 2014 (UTC)

Good point. Have changed the wording to past tense as 2005 is a little old and I would imagine things are better now. Doc James (talk · contribs · email) (if I write on your page reply on mine) 04:50, 6 January 2014 (UTC)

Thank you. I have to wonder what value that past-tense sentence adds, but I'm just a kibbitzer. What's more shocking, and more current, is the 2010 study that showed only about 25 percent of people with CH using inhaled oxygen as an abortive, even though it's highly effective and virtually side-effect free. (I could provide a link to this study, but I don't have it in a secondary source.) The reasons why oxygen use is so low are many -- docs who fail to prescribe it; docs who prescribe it wrong (e.g., nasal cannula instead of non-rebreather mask); people who aren't told how to get a prescription filled; people who don't get results from a faulty system or who do not use it properly and conclude that O2 doesn't work for them. I mention these reasons because it seems to me that deciding whether to include the 25 percent statistic might depend on who the audience is perceived to be. For many people, oxygen is the lifesaver of CH treatments. — Preceding unsigned comment added by Chfather (talk • contribs) 05:24, 6 January 2014 (UTC)

We have very good recent reviews on treatment, and we should be using them. I am not able to find that any of them give the weight to psilocybin that we give. PMID 20352587 is a comprehensive, 2010 review, and we have a Cochrane review on oxygen therapy, PMID 18646121, which we are under-using. SandyGeorgia (Talk) 17:05, 6 January 2014 (UTC)

On oxygen, Sun-Edelstein (2011 review, PMID 21352222) says:

The use of NBOT in the termination of cluster headaches was supported only by weak evidence from 2 small randomized trials, but given the safety and ease of treatment, the use of NBOT will likely continue. There is insufficient evidence from randomized trials to establish whether HBOT is effective in the acute treatment of cluster headache. Lastly, there was no evidence to suggest that either NBOT or HBOT were effective in the prevention of either migraine or cluster headaches.

I believe that's in line with the Cochrane review, but would need to double-check. It seems our article is somewhat overstating now the usefulness of oxygen. SandyGeorgia (Talk) 23:12, 9 January 2014 (UTC)

It is still a primary treatment even though the evidence is poor because it is so safe. Doc James (talk · contribs · email) (if I write on your page reply on mine) 00:21, 10 January 2014 (UTC)

The Sun-Edelstein quote above here from SandyG begins by referencing the Cochrane Review from 2008: "A recent Cochrane Review171 assessing the safety and effectiveness of HBOT and normobaric oxygen therapy (NBOT) . . ." That's the only source for what's in the quote regarding NBOT. The cited Cochrane Review is from 2008; the double-blind, randomized, placebo-controlled crossover trial of oxygen published in JAMA (http://jama.jamanetwork.com/article.aspx?articleid=185035) was in 2009. HBOT is a completely different topic. So is the efficacy of NBOT or HBOT as a preventive. I realize the JAMA study is primary, and I guess I could look for secondary ones citing it . . . but I am telling you, anecdotally but definitively, that you are not presently overstating the efficacy of NBOT as an abortive. As I say, if you need me to find secondary evidence for my assertion, I will. Chfather (talk) 16:16, 11 January 2014 (UTC)

Thank you for pointing that out-- so it seems we're good on this issue. SandyGeorgia (Talk) 16:23, 11 January 2014 (UTC)

Parts of this recent review should be cited in multiple areas in this wiki RossChapman311 (talk) 06:01, 7 April 2014 (UTC)

[[4]]

63 people interviewed. The percentage of patients with pituitary abnormalities is interesting. Plus, whoever wrote this CH wiki needs to find sources for the hypothalamus/timetable point. This article should do it. If you wanna get the primary source, this neurologist from sweden has got it all written out for you, since I cant do it myself. So use it if ya wanna. It should be referenced. It makes the most logical sense that the reason the headaches occur in the first place would be associated with the hypothalamus. Ive had them for 4 years, every may for a month. 1 to 3 a day usually. Sometimes i get a day off, but im waiting for it to kick in again the whole time i dont have the CH. Needless to say, Im not looking forward to a month from now. RossChapman311 (talk) 06:01, 7 April 2014 (UTC)

Will read this review. Doc James (talk · contribs · email) (if I write on your page reply on mine) 06:14, 7 April 2014 (UTC)

We state

"Valproate, sumatriptan and oxygen are not recommended as preventative measures" ref states "Based on current evidence, one review suggested that sumatriptan, valproate (Depacon), misoprostol (Cytotec), supplemental oxygen, cimetidine (Tagamet), and chlorpheniramine should not be used for preventive treatment" [5] Doc James (talk · contribs · email) (if I write on your page reply on mine) 16:22, 8 October 2014 (UTC)

Causes

Some news regarding causes: Naegel S, Holle D, Desmarattes N, Theysohn N, Diener HC, Katsarava Z, Obermann M (2014). "Cortical plasticity in episodic and chronic cluster headache". Neuroimage Clin. 6: 415–23. doi:10.1016/j.nicl.2014.10.003. PMID 25379455.{{cite journal}}: CS1 maint: multiple names: authors list (link) - Open access. --Friedrich K. (talk) 13:59, 9 November 2014 (UTC)

A primary source. We should try to use secondary sources per WP:MEDRS Doc James (talk · contribs · email) 03:19, 10 November 2014 (UTC)

Content

"In one study, daily capsaicin was applied in the nose achieved not only desensitization over the next few days to the local pain but also CH relief: "Those who rubbed capsaicin in the nostril on the opposite side of the head had nothing happen. They started out having around 40 attacks a day, and a month later the headaches were still going strong. Those that rubbed capsaicin in the nostril on the side of the head where the headaches were, cut the average number of attacks in half, and in fact half the patients were cured–the cluster headaches were gone completely. All in all, 80% responded, which is at least equal to if not better than all the current therapies out there," as reported by Michael Greger, M.D. and referencing a 2009 peer reviewed study."

This ref [6] does not mention capsaicin? And this ref [7] is not good enough. Doc James (talk · contribs · email) 20:59, 4 March 2016 (UTC)

Hi, thanks for letting me know; in fact I put the wrong reference for the primary. As for the summary, it's better to have Dr. Greger, M.D. summarize than one of us on wikipedia which de facto is what otherwise happens anyway right? In fact there isn't a more reliable person than him to provide the summary; he's the only expert I know of, who personally reads every singles English language peer reviewed research paper on nutrition in the world every year. I.e. he's a national or international expert, a fortiori, a reliable source, for summarizing the article (again, de facto alternative is one of us summarizing anyway) but should his summary be the second reference listed rather than the first? I'm fine with that. Thanks for letting me know! So what's the right reference then?

It's here: http://www.ncbi.nlm.nih.gov/pubmed/7708405 Which indeed Dr. Greger does cite in both the print (http://nutritionfacts.org/2014/04/10/natural-treatment-for-cluster-headaches/) and video (somewhere on his website; youtube copy is at https://www.youtube.com/watch?v=bSeYYXlH1MQ and as you can see at 3:00 minutes into the video he puts a screenshot of the article too, he literally shows the full reference in almost every single video so dedicated is he to referencing, as well as in the print summary on NurtitionFacts.org. NF is a 501(c)(3) etc [8] But yes I messed up which reference to cite, thanks for catching it!

Pain. 1994 Dec;59(3):321-5.

Preventative effect of repeated nasal applications of capsaicin in cluster headache. Fusco BM1, Marabini S, Maggi CA, Fiore G, Geppetti P. Author information Abstract

Preliminary studies have shown that repeated nasal applications of capsaicin prevented the occurrence of cluster headache attacks. The present study was designed to verify the difference in efficacy of treatment with nasal capsaicin, depending on the side of application. Fifty-two patients affected by episodic form were divided into 2 groups, one receiving the treatment on the same side where the attacks occurred (ipsilateral side), the other on the controlateral side. Eighteen patients with a chronic form alternately received both ipsilateral and controlateral treatments. Seventy percent of the episodic patients, treated on the ipsilateral side, showed a marked amelioration whereas no improvement was noted in the patients treated on the contralateral side. The efficacy of ipsilateral treatment was emphasized by the results obtained in chronic patients. However, in these patients, the maximum period of amelioration lasted no more than 40 days. The difference between the effects of the 2 treatments (contralateral and ipsilateral) was statistically significant in both episodic and chronic sufferers. The efficacy of repeated nasal applications of capsaicin in cluster headache is congruent with previous reports on the therapeutic effect of capsaicin in other pain syndromes (post-herpetic neuralgia, diabetic neuropathy, trigeminal neuralgia) and supports the use of the drug to produce a selective analgesia. PMID: 7708405 [PubMed - indexed for MEDLINE]

We can list this one first. The quote and summary from experts Michael Greger, M.D., FACLM is invaluable, but can be listed second if you prefer. The other reference was background research as to why the mechanism might work; one can include it or not. I hope this doesn't apply here but I must add that, while I abhor pseudoscience a la reiki etc as much or more than anyone else, there is a strong POV on much of wikipedia on health treatment in the other "big pharma or surgery only" extremist view. Dr. Greger can take it (equally powerful forces were arrayed against Oprah Winfrey in her "meat defamation trial" - Greger was an expert witness for the defence - the side that won, in ranch country, where Meat and Dairy Inc are almost as powerful as Big Pharma is nationally) and prevail, but my time is limited here, and these comments are directed not at you personally but pre-emprively for this thread. I think you'll enjoy the 4 minute video summary [9] which has screenshots of not just the abstract but a good half dozen screenshots including the graphs from the article's data and more.

Btw, this isn't place for discussion but sufferers --I am not one-- may be very interested in personal experiences e.g. Debra-Elaine Simpson's, Junior Hernandez's, TheHusky's at the top fo the comments of that youtube link. The pain level sounds just awful and my heart goes out to sufferers Harelx (talk) 23:28, 4 March 2016 (UTC) Doc James, if you're ever looking to (also) volunteer at another site, have you seen wikidoc.org? [10] is their about page, started by a Harvard physician..starts off with wikipedia but has medical professionals like you on staff. I really like wikipedia (notwithstanding above) but that seems like a nice sister project, as far as health and medicine. Harelx (talk) 23:37, 4 March 2016 (UTC)

I write here on Wikipedia because this is where more people come to read. About half of our core community of editors of medical content are health care providers here.

This is a primary source from 1994[11]. We are looking for secondary sources like review articles. Doc James (talk · contribs · email) 06:51, 5 March 2016 (UTC)

Found a review here [12] which found the benefit unclear. Doc James (talk · contribs · email) 06:54, 5 March 2016 (UTC)

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Introductory section should be revised

All of this should be edited or removed:

"The cause is unknown.[2] Risk factors include a history of exposure to tobacco smoke and a family history of the condition.[2] Things that may trigger attacks include alcohol, and nitroglycerin.[2] They are a primary headache disorder of the trigeminal autonomic cephalalgias type.[2] Diagnosis is based on symptom.[2]

Recommended management include lifestyle changes such as avoiding potential triggers.[2]"

The text cited is from a 2013 source, and there have since been publications since then describing causes. Also, starting a paragraph about "recommended management" about "lifestyle changes" is irresponsible, since cluster headaches can very rarely be avoided, even if triggers are avoided (need to cite source). — Preceding unsigned comment added by Oholleran (talk • contribs) 17:59, 5 October 2017 (UTC)

Disagree. Simple lifestyle changes if supported should be listed first. Doc James (talk · contribs · email) 17:12, 18 December 2017 (UTC)

References

Short-lasting unilateral neuralgiform headache with conjunctival injection and tearing

Appears to be a very rare differential. As such IMO it is fine to simple go in the body of the article under differential and is not needed in the infobox. Doc James (talk · contribs · email) 19:34, 7 December 2017 (UTC)

Per here a total of 50 cases have been described. https://www.ncbi.nlm.nih.gov/pubmed/26092511 Doc James (talk · contribs · email) 19:39, 7 December 2017 (UTC)

Rather than listing all of them in the infobox what do you think about linking to the group Trigeminal autonomic cephalgia? Doc James (talk · contribs · email) 06:40, 8 December 2017 (UTC)

I think that's fine for the infobox but the body should list the actual SUNCT syndrome entity. TylerDurden8823 (talk) 20:14, 8 December 2017 (UTC)

SUNCT syndrome JFW | T@lk 15:32, 18 December 2017 (UTC)

User:TylerDurden8823 agree and the body already explicitly lists it. Doc James (talk · contribs · email) 17:11, 18 December 2017 (UTC)

References

Agree, that sounds good. TylerDurden8823 (talk) 02:11, 19 December 2017 (UTC)

Lancet Neurol,

doi:10.1016/S1474-4422(17)30405-2 JFW | T@lk 15:32, 18 December 2017 (UTC)

Immediate improvement of cluster headaches after sexual activity

The Journal of Neurology, Neurosurgery and Psychiatry has an interesting piece about how becoming sexually aroused can make a cluster headache go away. See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077391/. Is this the only medical condition that can be "treated" by becoming sexually aroused? And does this raise ethical questions about whether health services could or should provide the means of becoming sexually aroused as a form of treatment? Matt Stan (talk) 15:36, 26 April 2018 (UTC)

I need to sign up to some research project & volunteer my own findings. I've suffered from both migraine & cluster-headaches since childhood, & have a variety of coping strategies for each. lying still in a dark room isn't one of them. but I have found, that against the onset of a cluster-headache, several things help. coffee, marijuana, sugar, coca-cola, sex & bowel-evacuation. some combination of these activities generally helps. the pain of these headaches is not overstated here- I have described my fear to colleagues that one day, one of these headaches will strike while I am in the neighbourhood of my electric drill; trepanation &/or permanent sleep being the objective.

duncanrmi (talk) 21:55, 9 April 2021 (UTC)

Update treatments to include electrical stimulation devices

The FDA recently approved an electrical stimulation device (marketed under the name "gammaCore)" to be used to treat cluster headaches. I don't have the expertise to update the "Management" section, but I recommend that someone with the requisite knowledge do so. [A 2018 FDA memo may be a good place to start.] I am aware that other similar devices may become FDA-approved for cluster headache treatment within the next few years, so a new subsection on "electric stimulation devices" may be in order. — Preceding unsigned comment added by Drbb01 (talk • contribs) 00:35, 19 January 2019 (UTC)

We should look for better sources. Was approved as simple "substantially equivalent" to something else. So the device is not unique. Doc James (talk · contribs · email) 01:20, 30 January 2019 (UTC)

I agree with respect to better sources. I also agree that the device is not unique. That is why I believe there could be a new, short section within the "Management" on electrical stimulation devices. No need to mention any particular device. I did find a mention of research on this treatment in the subsection on "Surgery," but (a) this is not a surgical procedure (other treatments in that section do require surgery), and (b) the only study cited in the section refers to TENS devices, which may be appropriate but I imagine more recent studies should be included as references as well. Drbb01 (talk) —Preceding undated comment added 00:13, 4 March 2019 (UTC)

"Often" suicide?

Ref does not make this claim. Doc James (talk · contribs · email) 01:18, 30 January 2019 (UTC)

Is this source primary or secondary ?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1738593/ it is used in the bodyWalidou47 (talk) 20:52, 6 April 2020 (UTC)

It is primary. Doc James (talk · contribs · email) 17:37, 7 April 2020 (UTC)

Sections for one sentence

I do not think we need a separate section for one sentence. Doc James (talk · contribs · email) 17:37, 7 April 2020 (UTC)

Neutral do not agree or disagree thanks.Walidou47 (talk) 17:37, 7 April 2020 (UTC)

Research direction vs researched conclusions...

The 2006 study referenced in 'research direction' is not really suitable for this section as it's misleading. The study concluded in 2006 and showed significant results in both the management and prevention of CH. I'd therefore like to remove this particular sentence and place the findings of this study under the 'other' sections within prevention and management. Is there any objection to this suggestion? JulianParge (talk) 16:00, 12 June 2020 (UTC)

I had an answer to this as part of a contribution I tried to make under psilocybin for the same discussion. I won't amend anything. JulianParge (talk) 17:33, 12 June 2020 (UTC)

Other treatments

What would be the best way to include ongoing research into what seems to be a remarkably effective treatment that has failed to gain much attention yet.

https://n.neurology.org/content/82/10_Supplement/P1.256

There is version/variant of the above protocol in a document "Suggested Headache Preventative Treatment Protocol" .... "prepared for neurologists, pain specialists, and primary care physicians who routinely treat patients with headaches."

https://www.tacsweb.nl/wp-content/uploads/2018/04/suggested-ch-preventative-treatment-protocol-for-neurologists_07-07-17-1.pdf

Idyllic press (talk) 10:37, 7 November 2022 (UTC)

Tobacco smoking

Does Wikipedia even allow the content that's written here? All the statements have citations, but it sounds like it was written by a tobacco company. 184.176.138.209 (talk) 07:36, 27 April 2023 (UTC)