Posted by Bob Johnson (12.19.49.2) on December 12, 2000 at 09:36:38:
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.
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The importance of this abstract are the findings about: 1. the delay in making a good diagnosis, 2. the number of erroneous diagnoses experienced, and 3. the number of physicians consulted before a good diagnosis. I'd like add a fourth element, Drummer's summary ("And a bit more....", 12/11/00) which indicates how low is the rate cluster headaches.
The issue is: how do we live and deal with a medical system in which we have these sorts of frustrating experiences?
It is useless to rail about the doctor, the quality of medical education, or "the system". Claims that it "should" be different or that "it's not fair" only serve to sustain a victim posture and divert good energy which we need to care for ourselves. The reality is, with such a low rate of CH (Drummer's material), many physicians rarely see CH (and skill in Dx and treatment comes with experience). Medical education cannot make every physician skilled in every problem: the existence of the complex, multilayered speciality structure of medicine is all the evidence we need to prove that point. And many of us live in small communities where there are no specialists in headache and so we have to work with the best available to us.
My personal confrontation with the limitations of small town medicine lead to exploring the medical literature so that I knew more than my primary care doc did, so that I could educate him on how to care for me. It's worked well because I'm now in a position to offer him information which he respects and can use--to my benefit.
My point is: as individuals, we must gain some fairly coherent and extensive knowledge about CH before we can get good long term treatment. Second, we need this information base to be able to negotiate with the doctor over the treatment and to be able to give our physician reliable feedback on its effects. It's this belief which lead me to post the series, "Cluster Resources", which is now in in 9th "edition".
As more and more people are discovering CH.COM there are more first time messages in which folks are desperately seeking relief from their pain. As well intentioned as the responses are, replies of "try A" or "try B" leave the person with little more understanding of CH than when they first found us. (It is a striking problem with the internet that while there are thousands of sites giving medical information there is stunning sameness and shallowness in the information. OR the information is so fragmented that you cannot get a coherent overview--a view which leads to my bias for a well written book.)
Bottom line: I think we could help more by encouraging folks to deepen their knowledge of CH rather than only seeking a quick fix. We all need to learn how to live with the limitations imposed by medical knowledge. We need to teach survival skills in dealing with the medical system.