|
||||
|
Title: It's your Doctors job to KNOW! Post by FK5 on Apr 30th, 2008, 4:40pm This board has been a savior to me. Everyone on here that has responded by the board or by message...Thank you! You all are as good as the meds I'm taking (They're working!) As I wrote other places on the board, been diagnosed 4 years now. Took preventative action on CH 5-6 weeks ago before my 4th cycle began. Basically in the past like any other problem I had, out of sight out of mind. It took a few years, it wasn't out of mind. Took care of it by seeing doctors. I went into this being educated by this board and reading articles. After hours/days of reading all of the topics on the board, I can honestly say i was well equipped to go see a doctor(s). That being said and the reason for this post is anyone (newbie to the 40 year vets) need to be assured that you are seeing the right doctor and doing the meds the right way. I went through uneducated docs like many of the people I read about and talked to. Didn't know until this board that they were uneducated doctors. "Use Ibuprofin, asprin, take some pain meds" "take a squirt of Imitrex, "Find a way to relieve your stress". Thankfully I "only" had to endure three years of that and four kip 10's. My point is this, read this board throughout. Don't settle on meeting one doctor. I know it's difficult financially for some but find a way to meet that doctor that sounds like he's been reading this board for the past 10 years. It is NOT your job to educate a doctor on this or any condition. That doctor you find to treat you needs to be rattling off preventatives, abortives from A to Z. He needs to have a plan of attack and be ready to adjust if needed. He needs to hear your woes from A to Z. Bedside manner of a doctor and an educated CH doctor goes along way with us. If it's you that is informing the doc of steroids you heard of, or the use of O2 or a base line preventative like Verapamil or a spray like Migranal, injections of Imitrex (whatever) you need to stop yourself and continue the search. I am very passionate about this. I want everyone out there to get the "right" help. I don't know what the rules of the board is regarding referrals but if you have a doctor that is doing the "right" things, I would hope that you could spread the word of who it is and where they are. Just like this board, once you have found that doctor you'll feel like your home! I am not saying you'll get instant relief or relief at all but you'll have an educated plan of attack. Don't settle for anything less. If you have a good doctor no matter where you live..pass the word. Everyone may have different experiences but at least it points people in a direction. If you are from Chicago...after 4 different meetings came across Diamond Headache Clinic. They have been very good for me. Had to get that off my chest! Pain Free to all! FK5 |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Brew on Apr 30th, 2008, 5:20pm Quote:
Okay. What if that's the only kind of doctor that's available? Not everyone lives in a metropolitan area, my friend. |
||||
|
Title: : It's your Doctors job to KNOW! Post by kevmd on Apr 30th, 2008, 5:27pm glad to see you are getting relief. Somewhere, there is a list of recommended doctors by state and country. Passion is a good thing and we could use your energy to help others here. I understand the out of sight out of mind thing but coming to this site will not give you CH. So stick around with us. I have never met anyone here but would open my home to everyone here. Except Mr Happy.......He's been sucking on oxygen for too many years and frightens me. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by FK5 on Apr 30th, 2008, 5:38pm I completely understand. I didn't say it was easy but I do feel it's vital. It took me an hour and half to get to my appointment this morning for the basic follow-up checkup. I traveled 2 hours into Indiana for the second doc I met with prior to picking the one I am at. He was actually more knowledgeable than most but not the guy. While it may take up some traveling time for checkups, I have found that they are only a phone call away when things go bad. Scripts are sent directly to the pharmacy and there is no need for me to go see the doctor. I don't know your situation but I would hope that there is somebody out there for you. Take care, FK5 |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Bob_Johnson on Apr 30th, 2008, 7:21pm This is a major reason that many of us have had to educate our docs so that we could get the care we needed. In such a situation, we recommend looking for a doc whose ego will tolerate being "trained" by his patient! --------- Medical education in headache Posted 9/26/07, MEDSCAPE -------------------------------------------------------------------------------- Abstract statements from a study of headache education in medical programs. Second para. specific to neurological residency training. Gives good idea of why it's difficult to find a sharp doc. ========================= "Objective. To explore the extent of headache education received by medical students and residents. Background. Headache is a common, often severe, and sometimes disabling problem. However, 49% of sufferers do not seek professional treatment -- of those who do, only 28% are very satisfied. One possible reason is limited education of physicians about headache. Methods. Surveys were sent to all allopathic and osteopathic medical schools, 200 family medicine residencies, and all 126 neurology residencies. Information requested included the amount and perceived adequacy of headache education and any plans to increase headache education. Results. Response rates were 35% to 40%. Medical school lecture hours ranged from 0 (4%) to >5 (24%) with 92% having no plans for an increase in headache education. Family Medicine residency lecture hours ranged from 1-3 (30%) to >5 (34%) and case presentations from 1-5 (23%) to >5 (41%), with 88% of program directors having no plans for increase. Neurology residency lecture hours ranged from 1-3 (11%) to >5 (64%) and case presentations from 1-5 (23%) to >10 (57%), with 80% having no plans for increase. Conclusion. Undergraduate medical education in headache is limited. Despite medical schools perceiving their training as adequate, both neurology and family practice residency program directors believe entering residents are inadequately prepared in headache upon entering the program." "Neurology Residency Programs Neurology residency program lecture hours varied from 1 to 3 hours (11%) to >5 hours (64%) (Figure 2). The number of case presentations ranged from 1-5 (23%) to >10 (57%) (Figure 6). Forty-two (95%) of program directors believed that their headache education was adequate (Figure 4). Interestingly, 20% of neurology programs indicated plans to increase training in headache management. Similar to the family practice programs, 68% of the program directors believed that new residents had inadequate knowledge about headaches upon entering the program while only 11% of the program directors believed that their residents were well informed about headache." |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Jonny on Apr 30th, 2008, 8:18pm on 04/30/08 at 16:40:38, FK5 wrote:
Have you joined "OUCH"?........They have a list of CH knowledgeable docs supplied by us sufferers. BTW, if you aint got much cash and your doc will listen to you......educate his ass!!!! |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Brew on Apr 30th, 2008, 8:41pm on 04/30/08 at 17:38:51, FK5 wrote:
I happen to have an excellent neuro with whom I have the same type of relationship you describe. He's been my doctor for 14 years, and he's just a phone call or an email away. But this is a big damned country, bud. Lots of folks live in the sticks. To state that it's not the patient's job to help educate their doc is short-sighted at best. Not a lot of folks have the luxury of choosing between a couple dozen different docs. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by DennisM1045 on Apr 30th, 2008, 8:59pm I love your passion FK5 and I know your heart is in the right place ... You know the but is coming right ... Well here it is: Unfortunately I think you are offering a black and white solution in a world that is many shades of grey. Brew made a great point when he said, not everyone lives in a Metro area and can get access to properly educated Drs. We're such a small subset of the patient population that those of us that find someone properly informed are very lucky. I'm one of the lucky ones that the first Neuro I found knew something about CH. Does he know as much about CH therapy as I've learned here? No. Had he ever perscribed high flow Oxygen for clusters before? No. Had he ever perscribed it? Yes ... at 8lpm. So after he loaded me up with half the arsenal I really needed (Verapamil @ 240mg, Neurontin @ 800mg and 6mg Imitrex Injections) I printed and brought to him the research I found on this site that was relevant. Being a Dr with an open mind he read through it and then agreed that 12-15lpm was the way to go. When I went back to him and said I wanted to try 4mg injectables instead of the 6mg to help reduce the side effects, he said sure. After all, I'd already shown him that I was doing my research and not just jumping into things blindly. When I suggested immediated release Verapamil for this cycle reasoning that I might tolerate it better than the SR formulation and supplied the research that backed up my argument, it was immediately accepted. He gave me guidelines on BP and HR that he would be comfortable with and we went from there. The result is the best cycle I've had in years. So IMO a Dr that has heard of CH and has an open mind can be just as effective as a CH specialist. You seem to have found an excellent team and I'm very happy for you. I wish everyone was that lucky. Unfortunately that isn't everyones reality. Wishing you many PFDAN... -Dennis- |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by kayarr on May 1st, 2008, 12:34am I can't imagine the horror of standing the average of six years that it takes to get a correct diagnosis. Jeff was lucky that the first Dr. he went to, even though he was in a small town in Utah, was young and motivated to find out what was wrong with him and he had O2 in 24 hours. What they all say is true. OUCH is here to educate not only Dr. but loved ones. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by wildhaus on May 1st, 2008, 10:02am I do not know who gives you the right to even sugest what you have suggested it is insulating , to me, and I would think to other and it is very patronizing……. I am new (relatively) to this “only” 2 ˝ years, and to tell me it is the Drs. job to know, A normal GP will (most likely) hardly ever be confronted with CH if at all during a life time career, A neuro dose gets a little bit about CH; and I know, I do help at the final exams for neuros as a volunteer helping the young generation of neuros know how to diagnose / understand CH. And most of them will not see a CH during the curse of there career……. If we will not go out and try and work on bringing the understanding of CH to Neuros, as a start, and to GP we will go on and live in a situation that was just a few years ago……. we have it slightly better now, some of “us” are trying and doing to help educate us in the first place, and with that to spred the word, yes to educate the Dr’s. It is arrogant of you to even suggest what you have suggested, you might know a bit a bout CH you might know even more then I believe you do, but with the arrogance that blinded you, you have missed the real situation, the lack of knowledge in most cases, and the urgent need for ech and one of us to go out and spred the word, educate the medical world. And you have dwarfed the work that fine folks do at OUCH and other around the world It is not a utopia - perfect world, its up to us to make it better for our self! It is up to us to help push for research, and I know haw much work and dedicating, as well as time, it takes, and it takes self initiative (often) to push Dr. to read about CH to look for new ways. Join OUCH (if you didn’t ), and ask what you can do…. its easy to push the key board with arrogant and Patronizing words, TO DO, is what it takes to make our little world, just a bit more comfortable. Michael (I do apologize for the strong opiniond replay, I just posted, but I do feel the respectful gentleman have missed the point…. and got me very insulted and angry, or my reaction could be influenced by Lithium, given to me by and educated Neuro with a lot of help from me CH.com and CK in Germany) |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by FK5 on May 2nd, 2008, 10:46am I truly don't mean to insult anybody. It saddens me when I read a post about someone's doc not understanding or providing the use of 02. My views come from dealing with uneducated docs for the past 25 years. Being a type 1 diabetic since 15 and now a CH person. I've run into MANY docs that I have literally put my life into their hands and gone in circles. They get complacent and don't read up on the latest and greatest. I'm paying for their services, the least they can do is read the literature I send them and keep up with my condition. When I constantly had to bring up that I heard about this or that (which is what you have to do to keep them on their toes) I began searching for better while I was still their patient (customer). I believe strongly that you have to educate the doc you have. Didn't mean to come off as don't. Without any hesitation..you have to. If they become educated because of you..that's great. So to make that my view CLEARER, educate, educate and educate. But I do think strongly that while you have to use that consistently uneducated doc because that's all you have, keep searching for that educated doc out there. For people financially strapped or live far from a "cluster" of docs, it's tough (been there financially) but some how some way find that doc. This board doesn't have a cure, it doesn't stop the beast from popping in but I can tell you I feel a sense of confidence after finding this board. It's the same feeling I got when I found my doctor. He hasn't cured anything for me but i can tell you I feel the same way when I found him..a sense of confidence. CH is a lifetime condition, we have a lifetime to keep searching for the best help possible. As soon as my cycle is over..hoping very shortly, I am putting my efforts into letting the "outsiders" know all about this. Pain Free to all! |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Brew on May 2nd, 2008, 10:51am Okay, then. Maybe you should have said that the first time. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by FK5 on May 2nd, 2008, 11:09am Sometimes when you are frustrated, the anger comes out first rather than the reason behind it. Plus add some meds in your thought process and who knows how it may come out. Again, hopefully I made it CLEAR to everyone this time around. Pain Free to all! ;) |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by kevmd on May 2nd, 2008, 2:33pm I completely get where you are coming from. While we have to educate our doctors, its a dam shame that we have to. They should have been educated in medical school. They should also take the time on their own to stay up to date. And it is a real shame that patients need to educate neurologists about cluster headaches. That should not be my responsibility. If someone mentions o2 to their neuro and he looks at you like you have 2 heads...........thats a problem!!!! So I completely understand you. It may not have come across the same way to everyone but who the hell cares? Not eveyone understands what everyone is trying to say..... especially on a message board. Keep it real |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Sandy_C on May 2nd, 2008, 5:17pm I understand what you are saying. Our doctors SHOULD know about and how to treat CH, but since it's just a very short segment during their medical training, it's doubtful that many actually do know. So, I agree with those saying that Yes, we DO have to educate our doctors. We are our own best advocates. And, this puts it all in a nutshell. on 04/30/08 at 19:21:49, Bob_Johnson wrote:
Sandy |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by purpleydog on May 2nd, 2008, 10:27pm My neuro is up on CH, however, I still had to "teach" him about certain treatments he had not heard of, and meds he had not heard of, let alone that there has been success with CH treatment with them. He understands that when I bring up a med he hasn't heard about, and in dosages that actually work for CH, that I've done my homework. He didn't know there were vials of imitrex available. He'd never heard of Zyprexa (olanzapine), but when I told him these were available, and explained what Zyprexa was usually used for, but it killed a CH hit, he immediately prescribed it for me. I told him about this board. I've seen him since 1993. At first for migraine, then when my CH started getting out of hand, and my regular GP, who diagnosed me, and was practicing medicine part time due to teaching at the local medical school, and therefore was unavailable to me when I needed help. My neuro and I have a long history together. Due to the rarity of this condition, it is usually necessary to educate your doctor. The important part is whether he is willing to learn. It's the same as having any other rare conditon/ disease. Most docs just aren't trained in them, but if they are willing to work with you, then great. Doctors don't know everything about every medical condition. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by midwestbeth on May 2nd, 2008, 11:32pm Quote:
I agree. It is your Dr's job to properly treat you. If you feel you are not getting the best care and treatment, fire that Dr. There are good Dr's out there. Beth |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Pinkfloyd on May 2nd, 2008, 11:49pm I think some of you guys are being a bit tough on old FK5. You all know I'm as much into education as anyone here..but....give the guy/gal a break. How many times have people said they've fired their doc for not knowing how to treat clusters.....and everyone here applauds. Plenty!! Yeah!! Right on brother!! Take control of your treatment!! Kick his ass to the curb!! How many times have people here been TOLD to fire their doctors and find a new one that knows how to treat clusters, even if they have to travel to a different state? Plenty!! Just get tired of the hypocrisy of this place sometimes. It was just an opinion. One that if stated by someone with 1000 posts had said it, they'd have been awarded a gold star. Yes, we DO need to educate the majority of the medical community. (I do my part so no one has to "educate me on the subject) I still give FK5 a gold star for being passionate in his opinions. :) Bobw Wish spring would get here and take the edge off the cranky factor around here. <geeeesh> |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Annette on May 3rd, 2008, 2:57am I think there is a difference between what a doctor should know and that doctors experience. What you want really is experience and experience comes only with time and exposure. No matter how good a doctor is, he/she cant become experienced in treating a certain condition unless he/she gets to see lots of patients with it. A GP has an average patient base of 6000 to 8000. A neurologist have a patient base of around 4000 to 5000. Prevalence of cluster headache (CH) is estimated at 56 to 69 per 100000. How much of a chance do you think a average GP or even a neurologist will come across one with CH ? How much time do you think that doctor should spend studying about CH ? If you have a job where you need to speak different languages to cater to different customers from different countries, how much time would you spend learning Zulu knowing that you most likely will never come across one ? What a doctor SHOULD know is how to recognise ie diagnose CH and then knowing WHERE to find the information about what to do ( referral or treatment ) for that patient. If that doctor is interested in CH he/she can certainly learn more, but they dont HAVE to become experienced in it. They should however be able to refer the patient to someone who is. A GP with a patient base of say 6000 and has 1 patient with CH, how much time do you realistically expect that doctor to spend on learning about CH to treat that 1 patient? To be fair to other patients, he/she should spend 1/6000 of the time on it, otherwise other patients may be compromised. On another hand, a neurologist with a patient base of 4000 who has 20 patients with CH should spend a lot more time studying the condition. In some cases, there isnt a choice for both the patient and the doctor, because they are IT ! In this case, the doctor should try to spend more time learning but the patient should be helping by providing the information to help the doctor cut down on the time spent on researching. Say if you have 4000 clients to care for in your job and there is 1 with a particular need that requires hours and hours of research and studying to serve just him, who isnt prepared to be part of the solution, but expects you to do all the work, how keen would you be in keeping that 1 client ? What you should look for is a doctor who is keen to learn, and you help him/her along as much as you can. If you insist on finding a doctor who is already fully experienced in treating CH so that you dont have to do a thing but sit there and be cured, then you are severely restricting your options and choices, which is a disservice to yourself and yourself only. Modified to add: If you come across a doctor who isnt willing to learn and to help you, by all mean change, but if you come across a doctor who has not yet had the opportunity to become experienced in treating CH but who is keen to learn, and you fire that doctor saying " its not my job to educate him/her " then it will be your loss. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by jjslugdog on May 3rd, 2008, 6:59am I'm a Registered Nurse, and have worked with most of the docs I've treated with, almost none of whom knew anything about CH's. Physicians all have a couple of things in common. First, they are very smart. It ain't easy to get though med school. Second, 99% of them have the "God" syndrome, thinking they control the health universe. Most are teachable, if you approach it in the right way. You have to judge how to present your information to your physician, whether it's a GP, Neuro, PM, whatever. The information they will respect will come from institutions they are familiar with. Don't take 'em a printed out sheet from our board here, even though we know more than almost all of them. The information is readily available from John Hopkins, Mayo, AMA, WebMD. It may take a visit or 2 in order to educate them, but it's better and less costly than "going fishing" til you find one that is knowledgeable about CH's. I would also advise going to one that is relatively young, say 45-50, as they will be more open to researching your information. Seems the older we get, the less motivated we are to delve into research into our given professions. When I went to get my O2 the other day, my doc, a Physiatrist, a Woman in her mid-40's, she asked me how to write the Rx. When I told her, she said: "15 lpm?!?!?!?!? You don't have COPD or anything, do you"? However, I'm close enough with her to where she knows I know what I'm talking about. By all means, educate your doc. Just do it the right way. Arrogance, frustration, anger, will get you exactly nothing. Printed facts from a respected institution that they hold in high regard will get you a doc that is willing to work with you. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by The mad viking on May 3rd, 2008, 7:08am We cant expect docs to KNOW about ch My GP anwered me this way on a simular question from me. We have about 4 1/2 hours about headaches in general during the years studying to be a doc. There are about 250 different kind of separated/diagnosed headaches out there now in 2008. 250 headaches in 4 1/2 hours i think it speaks for it self how much a person can learn about this in 4 1/2 hours. Dont forget that after all they are ONLY humans after all He also told me that he was "lucky"to get 1 ONE patient with ch in his entire time in proffesion Svenn |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Brew on May 3rd, 2008, 8:59am on 05/02/08 at 23:49:43, Pinkfloyd wrote:
Then perhaps we can spend our lives bopping from one doc to the next in search of one who knows more about our condition than we do. As for me, I'll take a relationship with a caring human being who's willing to listen and learn. The best relationships with doctors are always a two-way street. The doc who should be fired is the one who talks and doesn't listen - not the one who doesn't know it all. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by MJ on May 3rd, 2008, 10:51am on 05/03/08 at 02:57:25, Annette wrote:
Well said Annette. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Pinkfloyd on May 3rd, 2008, 2:19pm on 05/03/08 at 08:59:58, Brew wrote:
I had no problem with the message being conveyed to the original poster, just the attitude and tone in which it was being conveyed in some instances. date=05/03/08 at 08:59:58] Then perhaps we can spend As for me, I'll take a relationship with a caring human being who's willing to listen and learn.[/quote] Well good for you. That works for you. Ask yourself how many people with clusters, actually know much about them when they are first diagnosed? How many still no very little about how to treat them, even 5 years into their diagnosis? Many people here didn't get 02 for YEARS after being diagnosed? Out of the million or so cluster sufferers in the US, how many know as much about them as you do? What percentage don't have access to or know how to use the internet? How many sufferers are actually capable of teaching their doctors about clusters and how to properly treat them? How many people here DID go from doctor to doctor before they found one that knew enough about clusters to be able to adequately treat them. Most of us spent years bouncing around from doctor to doctor, including ones in the wrong profession (eye doctors, dentists etc) before we even knew what we had. My dentist was a great guy...very compassionate and willing to learn. We need to remember that there are millions of cluster sufferers out there that don't visit this disfunctional family known as ch.com. For them especially, we do need to teach the medical profession. It'll save all of them many years of pain and suffering. Our best hope of that is with org.s like OUCH. Bobw |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Brew on May 3rd, 2008, 3:10pm Yep. Good for me. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by purpleydog on May 3rd, 2008, 3:21pm on 05/03/08 at 14:19:39, Pinkfloyd wrote:
This is a great post, Bob. There are several of us who have been here for years, and we learn as much as we can about our conditions, especially the chronics (not that the episodics aren't learning too). But, looking at the questions posted on the meds board, and the CH specific board, by newbies, they have lot's of questions, and I'm not sure if they would feel confident enough to take info in, or even what info to take to their doc, to start working with them. I get the idea that most go by what the doc tells them the first time they visit. Then they wait till the next visit to start to change things, maybe. JJslugdog was right, take in some info from accredited sources that docs read regularly. You also have to look at it from the doc's point of view. How many would be surprised to have a new patient walk in with a folder of articles and info on how to treat CH? How many would be offended? (God complex). How many would be relieved that you saved them hours of research? (Annette's post). And how many would take the time to actually go over it while you are there, and start to work up a plan WITH you? Anyway, Bob is right... the ultimate point to doing this, is to help the CH'ers that are out there who don't know about us, or OUCH, and need help. We need to educate our docs, so they can help others too, not just us. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Bob_Johnson on May 3rd, 2008, 3:52pm Let's recall our collective history AND take pleasure in the positive changes. ========================= Headache. 2000 Oct;40(9):730-5. The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey. Klapper JA, Klapper A, Voss T. Colorado Neurology and Headache Center, Denver 80218, USA. OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen. PMID: 11091291 _________________________________________________________________________ Acta Neurol Scand. 2004 Mar;109(3):175-9. Diagnostic delays and mis-management in cluster headache. Bahra A, Goadsby PJ. Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering. Publication Types: Research Support, Non-U.S. Gov't PMID: 14763953 [PubMed] |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by purpleydog on May 3rd, 2008, 4:14pm on 05/03/08 at 15:52:55, Bob_Johnson wrote:
Wow! An Average of 22 years to diagnosis? I don't know how people dealt with that. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Jonny on May 3rd, 2008, 4:48pm on 05/03/08 at 16:14:18, purpleydog wrote:
Took me 23 years, how I dealt with it is how I deal with CH! |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by Pinkfloyd on May 3rd, 2008, 7:22pm on 05/03/08 at 15:52:55, Bob_Johnson wrote:
You're right BobJ. I think the internet has made a huge difference in this and I think OUCH especially should be proud to have been a part in this change. on 05/03/08 at 15:52:55, Bob_Johnson wrote:
The bold portion above is what strikes me. People now are much more likely to dump their doc if they aren't getting results. It used to take 22 years before people checked with 3 different docs and finding one that knew about clusters. Now it still takes three but they find that one that knows about them much sooner. It used to be that people (commonly called the Greatest generation) like my parents would stick with their doctors for life and not question them at all. I guess it was considered disrespectful. My Mother (God rest her soul) refused to leave her doctor even though she knew she wasn't getting the best treatment for her cancer, only because she was afraid he'd be mad at her and think that she didn't trust him and respect him completely. She cared more about his feelings than her own health. We had to drag her "kicking and screaming" to a specialist that finally properly diagnosed her. In this case, waiting for a nice doctor to learn about a condition, cost her years off her life. :( Bobw Tough subject for me, especially around Mother's Day. |
||||
|
Title: Re: It's your Doctors job to KNOW! Post by deltadarlin on May 4th, 2008, 10:47am I guess we were just lucky. Jimbo had his first headache in April, 1981 (while we were out of town, at my daddy's house no less). When we got back home, he went to our ENT. Dr. Warrewn Stassi (God rest his soul) and was diagnosed within a few weeks. Dr. Stassi had no prior knowledge of clusters, but he knew that Jimbo's headaches were not something he had seen before. Within a few weeks, and Dr. Stassi making phone calls to Tulane MEdical School and Oschner's clinic, we had a diagnosis and a treatment plan. He was a phenomenal physician (and I can honestly say, I've yet to meet another physician of his caliber) and we really felt his loss when he had a stroke and could no longer practice. Then we were lucky enough to find Dr. Kenneth Moore at the teaching hospital in Jackson MS and used him for several years. Then he moved to Chicago. Jimbo did see several neuros (coulnd't educate them for sh!t) and a headache specialist who's only claim to fame is the sign on her door. He now sees a GP who will listen and follow his lead for treatment. |
||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |