Talk:Cluster headache

Misdiagnosis Article at WHA

I was researching cluster headaches and I found Vast Majoritjy of Cluster Headache Patients Are Initially Misdiagnosed. In short it says that most doctors were unable to properly identify cluster headache in the majority of patients. Some were led to unnecessary surgery or otherwise given improper therapy. It also states that 16% of the people in the study made their own diagnosis. I thought this would be good information for the article but I can't find a nice spot to put it. Hopefully someone in the future can integrate this. Triddle 19:23, 15 Apr 2005 (UTC)

Could you search Pubmed for the relevant reference? That makes inclusion much easier. JFW | T@lk 09:54, 17 Apr 2005 (UTC)

I can't find a reference to that article on pubmed but pubmed does reference the International Headache Society diagnostic criteria for cluster headache. The report is given to us by the World Headache Alliance which is linked to by IHS with the following qualification: Headache sufferers and their families, or any non-medical person with an interest in this topic, can find information more relevant to their needs at the World Headache Alliance website. That's the strongest reference I can find with my limited medical knowledge. Triddle 22:54, 17 Apr 2005 (UTC)

Link Dispute

Why delete the link to the Cluster Headache Book at med-owl? According to the admin who has twice deleted this link, "let's not advertise other wikis unless very notable in the CH patient community (quod non))." Some thoughts: 1) the fact that another website is a wiki should be irrelevant - would it be better if I put the same information into plain html instead? 2) the page in question is in fact a unique and valuable source of information for the cluster headache community.

Floridian | Talk -- 13:27, July 6, 2005 (signed for the original poster by Wulf January 06)

Here's a quote from the "Cluster Headache Book": "One supplier that has been recommended by several people in the kudzu thread is Vitacost.com Their prices are excellent and they ship to over 50 countries. " The site appears to be nothing more than an "informational storefront" for a vitacost affiliate. Floridian is always on top of the current research on CH but the online book with plugs for vitamin shops worked into the text is inappropriate. The advertising and editorial content must be kept separate. I don't want to get into a revert war, so I'll leave it until Floridian can respond. THB 17:52, 24 February 2006 (UTC)

Wikipedia stated policy is to avoid "Links to sites that primarily exist to sell products or services" and Links to sites with objectionable amounts of advertising. (http://en.wikipedia.org/wiki/Wikipedia:External_links#Links_normally_to_be_avoided) The CH Book does not primarily exist to sell products or services. The term 'objectionable amount of advertising' is subjective, but comparable with other sites that have not been de-listed. In the case cited above, there have been many people in countries where kudzu is not easily available that have asked about that product, and the fact that a company will ship internationally is a practical issue for patients considering that treatement option.It is one of the largest collections of information on CH written by a patient. Floridian -- Dec 2006)

Not sure where to put this

I was diagnosed with cluster headaches, thought it was just a "go away" diagnosis, looked it up on internet and had most of the symptoms, one of the symptoms that isn't mentioned in the article is holding your head in your hands and rocking back and forward which I hadn't mentioned to doctor but I think is quite a good indicator. Think it should be mentioned as a symptom. http://www.cnn.com/HEALTH/library/DS/00487.html Also thought that smoking was related to occurence which is also not mentioned. http://www.webmd.com/content/article/46/1826_50688.htm ps it really really does hurt, but 100 times the pain of anything else seems non Wiki standards, why not 1000.

in regard to the "head in hands" suggestion, that would be a sign of a cluster headache, not a symptom. ie, it's something that people show, they don't say "dr i'm holding my head in my hands, what's wrong with me... "

I also suffer from Cluster Headaches. I too hold me head in my hands (often only one hand on the right side where the pain is). I also tend to close my right eye as much as posible during an entire attach. Mine last 1-2 hours. My right eye does tend to be sensitive to lite.— Preceding unsigned comment added by 200.66.111.98 (talk • contribs) 16:32, 9 April 2007 (UTC)

Featured article

This article should be honed to a standard that would allow it to be the featured article on the front page of Wikipedia so that thousands of people will read it. It will need some illustrations.

Additional fact

A patient of Dr. Robert Nett, a headache specialist, reports that Dr. Nett has said that although CH's are not a commonly occuring condition, is still ranked as the 5th leading cause of suicide among adult males. Those sufferers are usually ones for whom the condition became chronic, without the periods of complete remissinon between clusters of attacks.

I could not find any stats about suicide causes in adult males to verify this.

— Preceding unsigned comment added by 65.174.156.30 (talk • contribs) 16:42, 30 March 2006

A search of PubMed for "cluster headache suicide" gives 5 hits. One of which reviewed world literature on prevalance rates (PMID 16856701). PMID 737393 makes interesting reading re treatment of patients who have suicidal ideation. PMID 16492244 has potentially relevant title of "Cluster: a potentially lethal headache disorder." but no abstract listed by PubMed (online version requires subscription). David Ruben ^Talk 01:22, 22 September 2006 (UTC)

Other names for cluster headache

According to Silberstein, Lipton, and Goadsby, Horton's Headache actually is an older term for cluster headache.

Older Terms for Cluster Headache • Erythroprosopalgia of Bing

• Ciliary neuralgia

• Migrainous neuralgia

• Erythromelagia of the head

• Horton's headache

• Histaminic cephalalgia

• Petrosal neuralgia ore spenopalatine neuralgia

• Vidian neuralgia

• Sluder's neuralgia

• Hemicrania angioparalyticia

Stephen D. Silberstein, Richard B. Lipton. Peter J. Goadsgy. "Headache in Clinical Practice." Second edition. Taylor & Francis. 2002.

I believe that Sluders Neuralgia is a separate condition and not a different name for cluster headaches. This is alluded to (confusingly) where the article discusses treating them both effectively with lidocaine.

Also, the part about "septoplasty and splinting" is laughable and should be removed as these treatments are not effective for Clusters. The citation (number 10 doesn't even relate to cluster headaches and should also be removed IMHO) The fact that clusters "may" be helped with the administration of lidocaine, in no way indicates that septoplasty and splinting would have ANY effect. The lidocaine numbs the ganglion nerve bundle in the back of the sinus cavity.

Psiloscribe 05:07, 27 June 2007 (UTC)Psiloscribe

Awesome illustration

That is an unbelievably awesome illustration. Please don't remove it. Ever. -Toptomcat 01:56, 6 October 2006 (UTC)

Remove the Illustration

I propose to remove that creepy illustration/ —The preceding unsigned comment was added by Hawaiianchief (talk • contribs) 08:25, 10 December 2006 (UTC).

It is an amazing illustration, but I would happily sign a petition to move it elsewhere on the page - not the main graphic. 82.40.75.55 12:34, 11 December 2006 (UTC)

• Keep - the illustration is fine and in its current location. It is no more creepy than anatomical pictures and gives a clear indication of the type & severity of the problem; indeed I suspect most sufferers would rate the picture as a somewhat gentile underplay of the real severity of an attack. Its location is I feel also appropriate for the same reasons - i.e. in forms an opening backdrop for the discussion that follows. David Ruben ^Talk 12:56, 11 December 2006 (UTC)
• Keep - the illustration "beautify" encapsulates what I feel when I get one. Jdanb 01:16, 25 January 2007 (UTC)
• Keep absolutely, unless someone has something better with which to replace it. Cluster headaches are creepy. t h b 01:19, 25 January 2007 (UTC)
• Remove. The illustration is thoroughly unencyclopedic. -- Earle Martin [^t/_c] 17:01, 12 February 2007 (UTC)
  • You are entirely entitled your own opinion in this straw poll, but I would be interested to know why you think the picture is "unencyclopedic" (vs a personal feeling of either not very good, or non-representative of the condition) ? David Ruben ^Talk 21:53, 12 February 2007 (UTC)
• STRONG KEEP. Typically I would agree that it should be deleted. But, consider this (and anyone suffering from CH please chime in). When trying to help others understand various conditions people try to give anaolgies or such. For my asthma I tell non-asthmatics to close their nose and breath for 5 minutes through a normal drinking straw. That helps. This illustration is far better than the cliche "ice-pick in the temple". I saw that illustration and cringed because it made the pain's severity and horrid nature very easily understandable to my co-workers (they are CH-free). It is not strictly encyclopedic on the surface...but it is in the spirit of encyclopedic because that picture can let the non-CH sufferer visualize them. All it needs now is that guy jabbing a spike through the eye--but that may be too over-the-top. -- Tony 19:15, 28 March 2007 (UTC)
• VERY strong keep. Despite being a lifelong sufferer of severe headaches, I could only laugh when I saw the image. It perfectly represents the pain that I have felt.PiccoloNamek 12:43, 12 April 2007 (UTC)
• VERY strong keep. I agree with everyone who said to keep it, however, I can see it being a potential problem with various people of different religions. Maybe that "devil" creature can be replaced by some other 'object' stabbing the eye, although I personally do not care because we all know that the devil is a bad thing. It just makes it very clear that cluster headaches are BAD. But like I said, if there's another picture that replaces the devil creature with some other object or something similar, then that would probably be better to use, just for neutrality's sake (if there's such a word). — Preceding unsigned comment added by 64.180.85.99 (talk • contribs) 08:21, 24 April 2007 (UTC)
• REMOVE. Who cares how evocative it is? You wouldn't find this illustration in a printed encyclopedia, so it doesn't belong here.Goophus 05:09, 11 May 2007 (UTC)

But Wikipedia is not a print encyclopedia. Wikipedia is not paper. Besides, there is precident for this sort of thing. The images on the sleep paralysis page are a good example.PiccoloNamek 06:15, 11 May 2007 (UTC)

Wikipedia certainly hopes to emulate print encyclopedias; otherwise much of the mission statement makes no sense. I agree that artists' interpretations of disorders like this can have a place on a page, but they look bad at the top (particularly in this instance IMO.) And I did not know about the image on this page till a friend (who suffers cluster headaches) made fun of the picture to me, which suggests I'm not the only one who thinks it looks cheesy.

I don't think a drawing inspired by a King Crimson album cover (to say nothing of the misplaced religious iconography) encourages much trust in the general internet public. Instead it makes wikipedia look horribly amateurish (again IMO.)172.129.213.68 09:13, 11 May 2007 (UTC)

That's me above. Somehow logged out during my post.Goophus 09:25, 11 May 2007 (UTC)

You should read WP:PAPER.PiccoloNamek 13:31, 11 May 2007 (UTC)

You should too, because your citation is obnoxious and utterly irrelevant. The gist is contained in the second sentence: "This means that there is no practical limit to the number of topics we can cover, or the total amount of content, other than verifiability and the other points presented on this page." This doesn't mean Wikipedia wants fan-art at the top of its pages, nor does it mean Wikipedia eschews the influence of paper encyclopedias. If it did, perhaps it would be called WikiCarta?

And certainly nothing is there in your citation to indicate that 'evocative' pics--- which in fact is the only ground on which this piece has been preferred in the above discussion-- should be privileged over descriptive pics, which indeed are already in the body of the article. Why should a wiki article prefer an interpretive image of pain over a far more objective one?

If you still prefer the page has a cheesy image at the top, that's your business. I'm bowing out of this conversation Goophus 11:27, 15 May 2007 (UTC)

• KEEP, for the reasons given above, or to restate; it perfectly illustrates a condition that has no outwardly visible indicators. Pjbflynn 06:01, 30 July 2007 (UTC)

• Definitely Keep, I have suffered from Cluster Headaches for over 20 years, and that drawing pretty much sums it up. I have used it to show to colleagues and managers, so they can better understand what I'm going through during a bout.

Currently in the news

Check out that BBC article [1]. Hugo Dufort 06:59, 24 November 2006 (UTC)

Question

The page http://www.webmd.com/content/article/46/1826_50688.htm says that cluster headaches can be 100 times more intense than migraines. Is that true? I seem to get migraines a couple times a year, and let's say they're about 10 times worse than a "regular" headache, or another example they're a couple times worse than a small burn. so cluster headaches would be a few hundred times worse than a small burn. If that's true then wow... 74.104.1.193 06:13, 16 December 2006 (UTC) Jordan

• I get both, and I think the 100X stat is exagerated. At their worst, the cluster HA pain is very intense, probably several times worse tha worst migraine I have ever had. But Migraines last for hours and sometimes days, and the cluster is usually done in 30 minutes or less. --208.204.155.241 18:42, 29 January 2007 (UTC)

• I have suffered various severe burns over the years and also get CH. The only bad burn after getting CH is burning all the skin off my thumb. It happened perhaps a month after a long CH cycle. I didn't even flinch as all skin shriveled and shrunk before my eyes. I simply thought to myself this is going to burn a bit and proceeded to treat the burn. I don't think it is possible to accurately say one pain is x times worse than another. However if I had to rate it for comparison, there is a ranking system used by CH sufferers know n as the Kip scale. It isn't scientific at all but is definitely very relatable for CH sufferers. It is a simple ranking between 1 to 10 and the ramp ups in pain are certainly not linear. While it is a very different sort of pain, I would rate severe burns about a Kip 4. http://www.clusterheadaches.com/scale.html is a url to the scale. I apologise in advance if this is breaking some wikipedia rule. It should also be noted not every sufferer reacts the same way described on the scale, but I certainly think it helps them convey the severity of a particular headache. Anyway I hope that helps with a comparison, as trying to explain the intensity of the pain to someone without it is one of the biggest problems with CH. 59.167.119.92 11:30, 22 February 2007 (UTC)

• • I'd put getting a nasty steam burn or something as a Kip 7 or 8. I'd rather have a CH attack than hold my hand above a kettle while it boils for half an hour. I agree it's a very different type of pain though. The pain-stabs while at the plateau pain level are knee buckling.I was wondering if the Kip scale could be mentioned in the article, just not sure the best place to put it. Potkettle 22:13, 13 May 2007 (UTC)

• I have CH and once in a while migraines strong enough to induce vomiting. I dread the CH, and comparatively I will continue with my yardwork with migraines (with d-a-r-k sunglasses, of course). I have many injuries and only had one thing worse my typical CH...a headache after a seizure. My sister-in-law also has CH and swears they are worse then the pain from delivering any of her children. -- Tony 19:01, 28 March 2007 (UTC)

General Discussion

Personally, I have suffered from CH. At first, I was eating collard greens as temporary relief. I can't explain it but it did soften the pain. The doctor I saw, however, prescribed me beta blockers to take. It's been about 2 years since I've had ANY problems with CH's. Machpovii3...Holla Atcha Bezzle, Kid! 03:46, 4 March 2007 (UTC)

Glad the beta blockers helped you so much. Calcium channel blockers have, I believe, been shown to be effective more frequently than beta blockers, so if the beta blocker ever stops working for you, it would be worth checking with your doctor aobut a calcium channel blocker such as verapamil.

--TeriRobert 06:48, 4 March 2007 (UTC)

Imaging/Pictures

If somebody wants to use them for this article, I put some images into Wikimedia Commons today:

• PET: Activated brain areas during pain
• 
• 
• 

• Voxel based morphometry (VBM, structural)
• 
• 
• 

Click on images and see image description for more information.

--Friedrich K. 23:29, 23 March 2007 (UTC) (talk)

Done. --Friedrich K. 08:38, 26 March 2007 (UTC)

Anecdotal update to Signs & Symptoms

I am actually in the middle of a particularly bad bout of these this week and was describing it to a co-worker. They thought I was making this up (severity of pain, that arresting the pain early can stop them entirely but beyond a certain point nothing works for the pain, regularity of pain, etc). So I looked it up here for the first time (I usually referred to medical journals or the like). Thank God this article was in good condition...now my co-workers understand why my eye will shut involuntarily when I have "one of my headaches".

One thing I would like to mention (and I have read some journals mentioning this time frame as well, but I'm not looking them up). In the "Signs and symptoms" section it says, "Cluster headache sufferers typically experience...headaches...for fifteen minutes to three hours." Mine range from 15 minutes to several hours, typically, and I have had bouts where the headaches would last 3 or 4 days each. I offer that anecdotally, I have read some reports' findings corraborating that timeframe as well so someone can find that.

That said, I will be adding an edit (and a corresponding 'need source' tag) with this information. -- Tony 18:53, 28 March 2007 (UTC)

Unsure re your anecdotal offering of 3-4 days as there are two time frames here: the duration of each single headache and the duration of the overall cluster of headaches. Likewise there are two frequencies to consider - the number of headaches in anyone day, and the frequency of clusters (in say each year). David Ruben ^Talk 02:48, 13 April 2007 (UTC)

The mention in the article that "some lasting days," in the symptoms section, will only add to the number of people mis-diagnosed. If there are 5 people out of a million that have had ONE headache attack last days, those people would have been hospitalized and on suicide watch upon awakening from their morphine drip. To say some last days, is very misleading. If a sufferer has one attack last days, in their lifetime, they are very unlucky people. There is probably something else going on, such as "medication overuse headache". If you want to change some, to rarely....ok.

In addition, under the treatments section. "Percocet (Oxycodone with paracetamol) has had widespread success amongst some cluster headache patients, especially males."

Good luck finding a citation on this. First of all, how do the terms widespread, and some, coexist in the same sentence? Second of all, percocet does not have much, if any success treating cluster headaches. The article mentions how ineffective even morphine is. Popping a percocet will not even enter the bloodstream fast enough to help, in most cases (90%) let alone touch the pain.

If someone's clusters regularly last 3-4 days, and percocet helps, odds are this person does not have cluster headaches and is actually one of those mis-diagnosed people talked about early on in the article.

In addition, the line "In some cases, cluster headaches remain "steady" without cyclical ups and downs for days," found in the Cyclical recurrance section, is misleading and will again lead people to be mis-diagnosed. This describes a migraine and not a cluster attack. If "some" were changed to "rarely" as in 1/1,000,000 I'd accept the statement.

If I did not comment properly or post my comments properly, please excuse this wiki-virgin.

Psiloscribe 05:31, 27 June 2007 (UTC)Psiloscribe

HoneytrapI've had clusters for years but thought they were migraines. I first woke up at 3 a.m. with them, and then I became more aware of "one coming on" and sometimes did things to try to prevent them. However, they were/are very, very, severe. They were always right behind my eye (left side) and though I also had neck and shoulder tension on that side, the piercing steady pain behind the eye was the main pain. I would stick my finger under the eye bone and press very hard against a blood vessel or nerve there. Sometimes they spread to the base of my head, and I tried putting a rock on the floor and lying down against it, rubbing my head back and forth to press down on some point. I put my feet in scalding hot water in the middle of the night because I'd read it might redirect blood and pain to the feet instead of the head. They lasted days. I could barely speak, and my left eye was droopy and I was congested. Triptans did NOT work at all. They just made my heart race. I tried narcotics finally and with ENOUGH, plus a little muscle relaxant, they helped me to sleep and would go away. But it still took at least 8 hours of sleep, sometimes in the middle of the day. Also, I noticed the congestion cleared up with narcotics. I could breathe! Mine were around my period, always one before and one after, so I thought they were hormonal but birth control trials didn't work. Then later I was accused of being drug-seeking. I had a suicide attempt during a period when the headaches were very serious and more often and I was being refused treatment by ER.

I get at least 2 a month and they are very cyclical. Because I always got them on Friday night or the weekend, the ER thought I was looking for a party fix.

Because they last 3 days without treatment, I discounted cluster, though I have every other indicator for clusters. I had a pain contract for 10 ccs of morphine but it wasn't enough. I needed at least 20 ccs and when I asked for more because it wasn't enough, they thought drug-seeking again.

Then, just recently, a doctor said I had clusters. I said, how could that be bc I have them for a couple days and he said it didn't matter. I have to say I aGREE. I fit cluster more than migraine profile. What's interesting is they've been less severe since I went on narcotics everyday for chronic pain. I don't know if this affects the hypothalamus or what, but although I still get them, they are NOT as severe. Still debilitating though. So my doctor said to go to ER for oxygen.

THe ER people filed a legal action to block me from going to the hospital, bc they claimed I was going for non-emergent reasons and was "drug-seeking". NOW they don't want anything to prove them wrong. So I went for oxygen and they hooked me up to a little nose thing (not a face mask) and gave me less than 5 per liter (or however that works). I said I was supposed to have the face mask. I don't know if they did it right, but I thought I noticed a slight improvement, but, I told them, I really thought it was a placebo effect and I didn't feel the difference. Then I went in again, and they cranked it up to 25 per liter, and with a face mask, and I thought that DID make an improvement. When I got home, I still had to take one more painkiller, but the headahce was decreased significantly and it didn't go on for the regular 3-4 day course. I believe oxygen worked for me, which is further indication I have clusters. oxygen doesn't work for migraine.

I have suffered for a decade with clusters and didn't have appropriate treatment. I am a woman, so that was probably confusing, and I have them for a number of days. But they are far worse than migraine, and what other migraine sufferers say relieves their pain. I was told to take "tylenol" and "advil" by the ER. They gave me sedatives and antipsycotics, refusing to believe my symptoms. I had the droopy eyelid and pointed it out and they didn't care.

I think it's dangerous to make any statement that clusters are only for brief bouts and cannot last for a couple of days. Some people, like me, may be affected by inappropriate descriptors. Many things, in hindsight, make sense to me now. For example, why I got the headache after having alcohol (sudden and immediate onset) during a sensitive period.

Now, my chronic pain meds of Percocet actually have been giving me more stability. I take 10 mgs maybe 4 times a day and it has greatly decreaded the severity of clusters. I think it's because, I've read narcotics affect horomones, and horomones are regulated by the hypothalamus. Something is connected. Men, on chronic narcotics, have lowered levels of testosterone. There has been a lot of research about testosterone and clusters, bc it's a headache that affects men more than women. I think there's a possible link. Perhaps my chronic use of narcotics affects testosterone or some other horomone level that also was triggering the clusters to occur before and after my period (I also got the clusters more if I was under stress).

I would be so happy to volunteer for a clinical trial. If that LSD (one dose, bc I'd be afraid of warping my brain with more) really does cure clusters, I would sure like to try it. I'm a stay at home mom and it would help. I guess I'll have to look up Harvard's trial. But anyone with info can leave a msg here for me and I'll check on it.

I'm thankful for this wiki on clusters. It's evolving nicely, and as for the photo, I'm glad it was kept. It's perfect. I saw it and was shocked "that's me!" except I would have one of my fingers inside that eye, trying to crush the devil out.

Thanks. I am a 33 year old female with a 10 year+ history of cluster.Honeytrap —Preceding unsigned comment added by Honeytrap (talk • contribs) 16:49, 3 September 2007 (UTC)