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Title: Interesting observation................ Post by don on Jul 10th, 2003, 6:56am Someone pointed out to me that they self diagnosed with CH by simply picking up a medical book, why dont the Docs do the same? That just changed my approach to the Standard diagnosis question in Rome. So what IS the problem. The diagnosis standards are available. Why so many misdiagnosis? |
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Title: Re: Interesting observation................ Post by Bob_Johnson on Jul 10th, 2003, 7:01am Because: 1. The diagnostic description in the book is an "ideal model" and many people don't have all the syptoms, just as written. 2. What appears to be cluster may be a symptom of many other diseases. (I've just read a journal article listing many neurological/eye disorders which present with pain which appears to be cluster. Sorting through this tangle is not always easy or fast.) 3. Cluster is so uncommon that many physicians never gain experience in diagnosis or treating. Two or three years ago, the head of one of the largest headache clinics in the U.S. said that roughly 40% of American docs have poor skills, relfecting weak training, in this area. Bottom line: why we need to educate ourselves so that we can educate our docs. |
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Title: Re: Interesting observation................ Post by jminmilwaukee on Jul 10th, 2003, 8:18am I'd just like to add that I posted a request for Names, Addresses, email and phone numbers for all headache clinics and specialist worldwide not but a month ago. Funny------From the CH site I recieved a TOTAL of 2 responses. This info will be used to "educate" as much as possible the medical community out there. SOOOO, I said the heck with you guys and went out on my own collecting 50 plus promising contacts to date. Seems to me that there is something wrong when a POST complaining about lack of knowledge in the med com gets 5 million responses while a POST looking to do something about it gets a grand total of 2. Keep up the good work people! Steller priorities indeed. ;) |
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Title: Re: Interesting observation................ Post by Bob P on Jul 10th, 2003, 8:32am Nature of the beast JM. Since it's conception, OUCH has been forging ahead in the hands of a few doers. That hand full of doers even changes with people coming and going. Accept that if you have a good idea for some action, you wil need to be the one that does most of the footwork. You may get a couple of helpers but for the most part it's your project to handle. Many are here for the social aspect. Just to know that there are others in the same boat as they are. That's good. Lord knows how alone and misunderstood most sufferers feel so this serves and important role in their mental well being. Just the way things work. Thanks for taking on your action item. |
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Title: Re: Interesting observation................ Post by don on Jul 10th, 2003, 10:16am Right...............now back to the issue to be presented. Looks like Bob Johnson is on the right track here. What "book" are you refering to Bob? |
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Title: Re: Interesting observation................ Post by jminmilwaukee on Jul 10th, 2003, 10:55am So what IS the problem. The diagnosis standards are available. Why so many misdiagnosis? Don Not enough doers I suppose. More doers, more educated doctors, more books. Perhaps I am way off base here? The social aspect is VERY important folks but you must admit it gets a bit tireing hearing "what is the problem" when the solution is looking back at you from the mirror. Just my 2c Jmin Oh, and more importantly, What book?!? :o |
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Title: Re: Interesting observation................ Post by don on Jul 10th, 2003, 12:11pm Quote:
UHHH, I hope your not waiting for me to answer that. If we can identify the problem, we can work towards a solution. Question to neuros in Rome.................................... Simply put, why is misdiagnosis such a problem in the US. How do we go about addressing it? |
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Title: Re: Interesting observation................ Post by BobG on Jul 10th, 2003, 12:28pm Many years ago when I was trying to get a diagnoses I went through the usual. The dentist, the ear-nose-throat guy, take is pain killer, the eye doc, take that drug. My doctor was very good at trying to help but had never seen a cluster victim before and was lost. After about 10 visits he handed me his Physician's Desk Reference and said maybe I could find something. Hundreds of headache entries later I found it. Then I got an appointment with a neurologist that recongnized it for what it was. |
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Title: Re: Interesting observation................ Post by vig on Jul 10th, 2003, 3:37pm I'm pretty sure I found my diagnosis in the Merck Manual. I was looking up migraines for a friend. My doctor, who meant well, was prescribing Elavil and Enderol, trying to figure it out. He didn't know what a cluster headache was. -p |
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Title: Re: Interesting observation................ Post by hdbngr on Jul 10th, 2003, 4:08pm Educate the Doctors. I was told by a headache clinic that I "didn't smell like a cluster headache patient" and they went on to cite heavy drinking, smoking, male sufferers, etc. The descriptions all say the avaerage sufferer fits a certain profile, but I think that has changed. Women are more often diagnosed with migraine because they assume an emotional or hormonal component that may not be a factor. To reply to the headache clinic post, many of the CH's will not reply to a request for headache treatment recommendations because we have found: 1) they specialize in migraine treatment, but have little or no experience treating CH 2) many of us have had a bad experience with these clinics, and would not reccommend them to another sufferer. We need seminars and conferences for Doctors and neurologists to get a picture of who we are, how long we go before finding diagnosis, the typical "misdiagnosis" we get first (TMJ, migraine, bite irregualrities, diet) as well as what treatments have been found effective as well as recent data on surgical solutions. There isn't enough information out there, for Doctors or sufferers. |
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Title: Re: Interesting observation................ Post by Not4Hire on Jul 10th, 2003, 7:02pm Don said: Quote:
...got NO problem with what you are questioning... and I am sure that LOTS O Docs... GOTS no clue..... and this is a good question that will (probably) be answered by some shrugs and some scurrying toward the nearest exit.... but here is MY...admittedly PROVINCIAL experience: I live in Western Montana, small town with about 2500 ...uh, shepherds... (not German either...) and I have, in the last 2 years seen about 4 different doctors, for various ailments (i will send a list, if you send me Money....) and EVERY damn one of them, when I told them I have cluster headaches, .....winced, asked me if I needed free Imitrex, asked me if I used oxygen, were ENTIRELY sympathetic to my PLIGHT, and were generally AWARE of clusterheadaches.... a couple told me about previous patients that had CH and what a terrible thing it is ... Why da Fuck are you folks in BIG CITIES bein' screwed so BAD?? ...fer crissakes...i was diagnosed in Deadwood, South Dakota.... pop. 1800.... by an ER doc who will always be in MY personal Hall of Fame.... he said give this chump OXYGEN at 12LPM fer 20 minutes...then let him GO..... and don't charge him... he's hurtin' bad enough already... ...i know...i'm an aberration http://dictionary.reference.com/search?q=aberration .... but y'all knew THAT.... :-X |
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Title: Re: Interesting observation................ Post by taraann on Jul 10th, 2003, 7:11pm And like someone else said not all CH sufferers are text book...A rare few (myself included) get the bulk of their CH attacks in the lower back of their head, and YES it is CH and it is in a few medical descriptions of CH's where it lists where the pain may be. The nuero that finally diagnosed me showed me the description in one of his books. |
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Title: Re: Interesting observation................ Post by Donna on Jul 10th, 2003, 7:41pm don, I don't think they even know what to look up. If an acticle could be presented to a medical magazine that they read, maybe it would catch their attention. It would need peer-reviewed information before they would have any faith in it......such as some of Dr. Goadsbys work. Maybe our own OUCH doc could suggest what to do and what magazine to concentrate on. I'd be willing to do some investigative work on the how's and wherefor's. |
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Title: Re: Interesting observation................ Post by Ueli on Jul 10th, 2003, 7:42pm Dr. Ulrich Oswald, neurologist from Zürich, writes on his web page http://www.ulri.ch/kopfweh/4emain.htm: Diagnostic The interview in (read: description of) typical cluster headache is so specific that you can diagnose it through the telephone (or via Internet) - providing that you know the disease and think of it. ... providing that you know the disease and think of it. That is the point in dear need of improvement ... PFNADs Ueli |
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Title: Re: Interesting observation................ Post by don on Jul 10th, 2003, 8:54pm Providing you know the disease. HMMM? The plot thickens, the strategy changes. Why then do so many neuros not know the disease? Regular Docs I can understand, but why so many neuros? Who supposed to be telling them ? |
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Title: Re: Interesting observation................ Post by Georgia on Jul 11th, 2003, 3:23am If this a group of neuros interested enough in clusters to be going to a conference in Rome....would asking them why neuro's don't know enough about clusters be preaching to the choir? Would it be like asking you why so few patients know about their treatment/condition? You could hypothesize....but all you could really answer is how you came to learn, what helped you to learn...so, maybe we should ask the same of them...how did they learn, what facilitated their learning of CH and how could we provide, help, facilitate that learning in other neuros and dr's. |
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Title: Re: Interesting observation................ Post by Charlie on Jul 11th, 2003, 3:47am Quote:
It can be boiled down to: FEAR In this case, for me, there really were good old days. The doc looked at me as I told him the level of pain and characteristics..he knew it very well and as I have said, had a little pamphlet with a cluster suffer's imagine and this was more than 30 years ago. No tests were done (It was a different time) and he said with all my tests that I had for my siezures, nothing new was needed. He was right and you all know the story of Dr. Wright's little technique. How I wish you all could get this thing. It really does work. Charlie |
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Title: Re: Interesting observation................ Post by Pushkin on Jul 11th, 2003, 2:06pm ""I "didn't smell like a cluster headache patient" and they went on to cite heavy drinking, smoking, male sufferers, etc. The descriptions all say the avaerage sufferer fits a certain profile, "" I wish this stupid profile would die - it is so inaccurate and yet so common in the medical community. I remember reading it 25 years ago, and it hasn't changed. It's Readers' Digest level medical knowledge. |
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Title: Re: Interesting observation................ Post by arby on Jul 11th, 2003, 5:01pm Don I was diagnosed by a neuro student at a teaching hospital while being examined before the doctor even came in the room. (All this after the usual ten year run-a-round with GP's, ear-nose and throats etc.) I think the basic symptoms are clear enough - they get caught up in the generalities (male, smoker, heavy drinker, etc.). The problem I have with this neuro (even tho he says that "Clusters are Hell" he doesn't keep up with the treatment options (scared to up verap above 240 for example and is more concerned about the cost than the pain releif - you'd think it was his money) Excellent question Don Ross (By the way, I don't smoke (smoke is a trigger for me) and I'm not that heavy a drinker) |
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Title: Re: Interesting observation................ Post by MarkHW on Jul 11th, 2003, 5:13pm I was misdiagnosed for a long time because I had migraine since I was 3. When I went to my Dr. and told him that my headaches had changed and were MUCH worse and MUCH more frequent he referred me to a neuro and told him it was migraine. It went on like that until I found out about Clusters and explained in great detail the difference between the 2 types of headache I was experiencing.... They never asked, just assumed. Mark |
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Title: Re: Interesting observation................ Post by jonny on Jul 11th, 2003, 6:14pm I was diagnosed by a Neuro my age that rode a harley and drove a vette, fuckin dude gave me anything I wanted right down to a script for a massage on my leg for sciatica. The one thing that stuck out was that he did not judge me on how I look and his willingness to try different combos. Had him for 8 yrs and then my ins. changed....... but now Im BACK with the dude that will give me anything ....YEEEE----HAAAA!!!! Lith and Verap love me!! .....................................jonny |
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Title: Re: Interesting observation................ Post by Callico_Kid on Jul 12th, 2003, 3:05am I was recently diagnosed by a chiropractor who saw me get hit with an 8 while working in his house. He ASKED me if I have clusters. I asked him in return how he knew about clusters as most MDs don't and he said it is because in their coursework on headaches they spent a good bit of time on CH and how to recognize it. He also knew he couldn't do anything for it. Maybe you should ask why someone the medical community looks down upon so strongly spends more time studying medical conditions than med students do. jc BTW, he wanted to know if I had a good neuro so he could refer patients if he met anyone else with CH. I wish HE was an MD. |
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