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starlight
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Please read this link
« on: Aug 10th, 2006, 2:20pm » |
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Hi all--I hope you are all pain free (including the tough burly guys here). I am posting this link separately (I also posted it under the thread "Clusters?" . I hope that it can raise general awareness (because I felt it raised my own awareness). It is an interesting article and it would not hurt to read it. Take care, Starlight
http://jnnp.bmjjournals.com/cgi/content/full/70/5/613
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Margi
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Re: Please read this link
« Reply #1 on: Aug 10th, 2006, 2:50pm » |
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I remember reading that article when it came out six years ago - at the time, it was quite refreshing to see that they were at least studying cluster.
Here's one, as well, that was updated just two days ago. I think it's the best description with the most useful links I've seen to date. It even introduces the appearance of "ictal" headaches, that are quite often misdiagnosed as cluster:
http://en.wikipedia.org/wiki/Cluster_headache
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Sandy_C
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Re: Please read this link
« Reply #2 on: Aug 10th, 2006, 5:57pm » |
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Thanks to both of you for posting these articles. The one Margie posted, I already have saved and bookmarked, but I also bookmarked Starlight's. It's interesting, because I always thought I was kind of the oddball female with cluster headaches, because I started my first cycle at age 53. Now, I see maybe I'm not so odd as I thought (nobody needs to respond to that, thank you  )
Sandy
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starlight
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Re: Please read this link
« Reply #3 on: Aug 10th, 2006, 7:21pm » |
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Margie,
Thank you for the links. I will definitely look through all of the Wiki links very soon. It looks like there is quite a bit of info there. Thank you, Star
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starlight
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Re: Please read this link
« Reply #4 on: Aug 10th, 2006, 7:22pm » |
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Sandy,
You're welcome! Hope something there was useful! Star
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serendipity
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Re: Please read this link
« Reply #5 on: Aug 11th, 2006, 9:49am » |
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starlight, it's pretty discouraging to read that women sometimes have TWO ONSETS of cluster headaches - one in their second decade and one in their fifth or sixth decade.
Even more reason to dread getting older. 
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| « Last Edit: Aug 11th, 2006, 9:49am by serendipity » |
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rickyshot
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Re: Please read this link
« Reply #6 on: Aug 11th, 2006, 9:49am » |
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SHOULD THE IHS CRITERIA FOR CLUSTER HEADACHE BE MODIFIED?
Many of our patients had photophobia, phonophobia, nausea, and vomiting with their headaches. These symptoms are not part of the IHS criteria for cluster headache and perhaps they should be added to make the criteria more sensitive. Can these symptoms still be used to distinguish migraine from cluster headache and tension-type headache? These symptoms may not be syndrome specific but just markers of trigeminal-autonomic pathway activation. Table 4 compares the frequency of photophobia, phonophobia, nausea, and vomiting from our own and two other cluster headache studies28-29 with the mean frequency of these symptoms from seven migraine studies.30 Photophobia and phonophobia occurred with equal or greater frequency in cluster headache than migraine. Nausea and vomiting occurred less often in cluster headache than in migraine suggesting that these two symptoms are useful in differentiating migraine from cluster headache, but photophobia and phonophobia are not. Further studies are needed on the prevalence of "migrainous symptoms" in cluster headache before we can justify a change in the IHS criteria.
I copied points of interest from the article. These docs are not saying migraine is a cluster. They are throwing out the possibilty that women may present differently than men. This article needs to be read. Because cluster is so rare the bounderies may be blurred at times and the definition may be altered in the future as more research is done.
I for one am happy any attention is being paid to this blight. And I am open to suggestions and new criteria and studies done by reputable agents.
One thing for certain I hold to a one marker of CH. It is a restless headache. you really can't be still. Moving and writhing in bed does not count as laying still as with a migraine moaning. But I can see where other symtoms not classically associated with it my be added to the criteria.
Just listen to our stories alone especially the women. It is even harder when the sufferer also has migraines like some of us do. The lines get very blurred.
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rickyshot
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Re: Please read this link
« Reply #7 on: Aug 11th, 2006, 9:59am » |
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Margi Your article is the bomb a must read also. I am printing it out for people I let in to my life to understand me. I like the mention of LSA for treatment.
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Margi
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Re: Please read this link
« Reply #8 on: Aug 11th, 2006, 10:12am » |
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As I said, the second link is much more current and shows a lot of relevant information and how the diagnostic tools have evolved since the first article was published.
Cluster is what it is. Revising the diagnostic criteria is only going to lead to blurred lines again and will encourage including other types of h/a. Why do that? Cluster hasn't changed. Why should the diagnostic criteria? The scary thing about that is that something crucial might be missed if doctors start diagnosing cluster just because a patient presents with "eye" pain and "Kip 10's".
I'd hate to hear a story of someone dying of an underlying condition that wasn't discovered because the patient had been labelled a clusterhead and chemically treated as one.
As I've said ad nauseum - headache pain can't be seen. Doctors have to rely on what patients tell them in order to diagnose them and there is no lab test for cluster. If your symptoms honestly don't fit inside the cluster box, don't try to stuff them in there just so you can belong to an internet support group. It could potentially cost you your life. Why is this such a hard concept to grasp 
*disclaimer* by using the word "you", I am not referring to anyone in particular so please extinguish your torches and carry on about your business.
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| « Last Edit: Aug 11th, 2006, 10:13am by Margi » |
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thomas
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Re: Please read this link
« Reply #9 on: Aug 11th, 2006, 10:21am » |
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on Aug 11th, 2006, 10:12am, Margi wrote:
As I've said ad nauseum - headache pain can't be seen. Doctors have to rely on what patients tell them in order to diagnose them and there is no lab test for cluster. If your symptoms honestly don't fit inside the cluster box, don't try to stuff them in there just so you can belong to an internet support group. It could potentially cost you your life. Why is this such a hard concept to grasp
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I can't agree with this more whole heartedly than I already do. Treating anything other than CH, as CH is a recipie for major health problems and/or death.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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serendipity
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Re: Please read this link
« Reply #10 on: Aug 11th, 2006, 10:29am » |
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Margi, it's an interesting article (and after reading it I have to say that it seems very accurate...it certainly describes my headaches more accurately) but it would hold more water if it wasn't Wikipedia, you know?
starlight's article may be older, but since it did come from a medical journal and was written by a neurologist, I wouldn't completely discount the information contained in it.
I think both links are great. I've printed them out, and like others, plan to share them with my family. I'm sure there's plenty to be learned from both articles.
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chewy
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Re: Please read this link
« Reply #11 on: Aug 11th, 2006, 10:34am » |
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Quote:| These symptoms are not part of the IHS criteria for cluster headache and perhaps they should be added to make the criteria more sensitive. |
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Its not listed with the IHS for a reason. They are common Meeegraine indications but not common CH indicators.
Read the reply by Thomas.
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rickyshot
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Re: Please read this link
« Reply #12 on: Aug 11th, 2006, 10:48am » |
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Any "abnormal" ha should be investigated before a diagnosis is given. I can't even begin to count how many CT scans, MRI and neuro exams I have been through including blood tests for sed rates to rule out temporal arteritis which is very dangerous in itself causing possible blindness if untreated.
Who the hell wants to join an internet group of folk who suffer this much to the point where we become quite self-absorbed. Although I met a great group of friends and support here, I wish I did not have to. Y'all understand I am sure. Agree with Thomas for sure on that one.
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Margi
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Re: Please read this link
« Reply #13 on: Aug 11th, 2006, 10:52am » |
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on Aug 11th, 2006, 10:29am, serendipity wrote:| Margi, it's an interesting article (and after reading it I have to say that it seems very accurate...it certainly describes my headaches more accurately) but it would hold more water if it wasn't Wikipedia, you know?. |
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Sorry but WTF? I guess you can't relate to how refreshing this stinky old Wikipedia article is to those of us who have been campaigning for years to get correct cluster information out there. To see a member of our community have his artwork displayed there, J.D. Fletcher, to see our very own Floridian's website linked there, to see our cluster buster friends hard work being recognized, to see OUCH there, to see GOOD diagnostic tools..... this article is a pat on the back to every one of us here who has worked hard to get the name "cluster" recognized.
I'm sorry that Wikipedia doesn't live up to your standards. Frankly, if this was written on toilet paper in crayon, I'd still be excited to be finally seeing accurate cluster information out there.
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serendipity
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Re: Please read this link
« Reply #14 on: Aug 11th, 2006, 11:02am » |
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Calm down. I said I thought it was an excellent article. I just wish we could see something this accurate published in a medical journal somewhere, instead of on the home of incorrect information that is Wikipedia.
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chewy
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Re: Please read this link
« Reply #15 on: Aug 11th, 2006, 11:03am » |
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Quote: but it would hold more water if it wasn't Wikipedia, you know?
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No. I dont know.
Quote:| To see a member of our community have his artwork displayed there, J.D. Fletcher, to see our very own Floridian's website linked there, to see our cluster buster friends hard work being recognized, to see OUCH there, to see GOOD diagnostic tools |
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Thats not credible enough?
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rickyshot
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Re: Please read this link
« Reply #16 on: Aug 11th, 2006, 11:09am » |
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on Aug 11th, 2006, 10:52am, Margi wrote:
Sorry but WTF? I guess you can't relate to how refreshing this stinky old Wikipedia article is to those of us who have been campaigning for years to get correct cluster information out there. To see a member of our community have his artwork displayed there, J.D. Fletcher, to see our very own Floridian's website linked there, to see our cluster buster friends hard work being recognized, to see OUCH there, to see GOOD diagnostic tools..... this article is a pat on the back to every one of us here who has worked hard to get the name "cluster" recognized.
I'm sorry that Wikipedia doesn't live up to your standards. Frankly, if this was written on toilet paper in crayon, I'd still be excited to be finally seeing accurate cluster information out there. |
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Here Here Margi. I printed this one for my friends and family. It is so easy to understand. Think I 'll keep a copy for future ER visits too.
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nani
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Re: Please read this link
« Reply #17 on: Aug 11th, 2006, 11:14am » |
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Wikipedia can be added to by anyone, right? I think that was her point. The article itself is very good, but if I remember correctly....many of us added info to it. It would be nice if something like that came out of a professional journal, that would mean more doctors might have a clue...
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serendipity
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Re: Please read this link
« Reply #18 on: Aug 11th, 2006, 11:22am » |
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Right, nani. I think the article itself is plenty credible and very accurate. All I'm saying is, I wish some neuro somewhere would publish an article in a medical journal with this same (excellent) information because a lot of people will read this article and completely discount it because it's on Wikipedia, which is unfortunate.
Look, I belong to another online forum (not cluster headache-related). It's basically a debate forum, I guess. Wikipedia articles are not allowed on that forum as a means for backing up your argument because there are so many inaccuracies there. In 2005 The New York Times published an article entitled "Snared In the Web of a Wikipedia Liar." Need I say more. It's just not a credible source. Please don't confuse this as me saying that the article and whoever wrote it aren't credible. That's NOT what I'm saying.
I hope that not every post I make is going to be met with hostility because I disagreed with some of you in another thread. I feel like I've got a black mark on me now.
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| « Last Edit: Aug 11th, 2006, 11:24am by serendipity » |
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Margi
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Re: Please read this link
« Reply #19 on: Aug 11th, 2006, 11:33am » |
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well, in that same vein, then I guess you would paint all of these "amateur" cluster sites with the same brush then - ch.com, OUCH U.S., OUCH Canada, OUCH UK, just because they're not written by medical professionals.
I think that information that comes from people who actually suffer from or live with the disease IS pretty damned accurate.
Here's a challenge for you then - print out the stinky Wikipedia article and take it to your doctor. That's ONE way to get it out there to be read by "professional" eyes.
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nani
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Re: Please read this link
« Reply #20 on: Aug 11th, 2006, 11:34am » |
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on Aug 11th, 2006, 11:33am, Margi wrote:
Here's a challenge for you then - print out the stinky Wikipedia article and take it to your doctor. That's ONE way to get it out there to be read by "professional" eyes. |
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Now, that is a brilliant idea!!! *turning on the printer*
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serendipity
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Re: Please read this link
« Reply #21 on: Aug 11th, 2006, 11:37am » |
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Are you even reading what I'm saying, Margi? As an "insider", I KNOW the information is good. But you're talking about getting the word out to people who don't know about Cluster Headaches, and I'm saying that putting even the best information out on a website that is widely considered to be an unreliable source for information isn't going to do that. I thought the article was awesome. I never, ever said otherwise.
Jeez, can you stop being angry for two seconds and actually read what I'm saying?
P.S. I print out TONS of information off this website and give it to my doctor. He's getting this one, too.
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Margi
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Re: Please read this link
« Reply #22 on: Aug 11th, 2006, 11:47am » |
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oh yeah, I'm reading every word, Serendipity. I don't miss much.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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serendipity
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Re: Please read this link
« Reply #23 on: Aug 11th, 2006, 11:50am » |
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Then how on earth did you manage to misinterpret what I said so badly?
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Kevin_M
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Re: Please read this link
« Reply #24 on: Aug 11th, 2006, 12:02pm » |
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In reading the article Starlight linked, some things could be cleared up better.
Quote:| Thirty two women and 69 men were identified. |
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Lets just say the number is 100 patients.
Quote:| Episodic cluster headache (more than 14 headache free days a year) was present in 75% of women and 76.8% of men. Chronic cluster headache occurred in the remainder (25% and 23.2% respectively) |
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And say 75 are episodic, 25 chronic
Quote:| Thirty four per cent of women and 45% of men stated that alcohol would induce a cluster headache, |
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Now, knowing chronics are far less prone to having alcohol as a trigger, the above percentages will seem low. Of the 32 women tested, 25% are chronic, being 24 episodic and 8 chronic. 34% of 32 is 11 women that find alcohol a trigger out of 32. But the study does not delineate the percentages by episodic and chronic. If it was all episodics that found alcohol a trigger, then 11 of 24 is 46%, which still seems low for clusters.
With the men, of the 69 tested, 77% are episodic, 23% are chronic and 45% of the total say alcohol is a trigger. If the chronics are eliminated then 31 of 53 men reported alcohol a trigger, or 58.5%.
Those numbers seem to fit the responses here closer. Just going by the numbers in the study can seem less accurate.
Quote:| However, physicians who treat patients with headache must realise that photophobia, phonophobia, nausea, and vomiting are part of the cluster headache symptom profile and that the presence of these symptoms does not eliminate cluster headache from the differential diagnosis |
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Here they lump nausea and vomiting in with photophobia and phonophobia saying they do not eliminate cluster headache from the differential diagnosis.
Quote:| Nausea and vomiting occurred less often in cluster headache than in migraine suggesting that these two symptoms are useful in differentiating migraine from cluster headache, but photophobia and phonophobia are not. |
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However, here they purposely single out nausea and vomiting as being useful in differentiating migraine from cluster.
Quote:| Further studies are needed on the prevalence of "migrainous symptoms" in cluster headache before we can justify a change in the IHS criteria. |
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Quote:| Further studies of the female patient with cluster headache are necessary to better define this primary headache syndrome in women |
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I like Wikipedia better
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| « Last Edit: Aug 11th, 2006, 12:06pm by Kevin_M » |
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