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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Burst my freakin bubble
        
(Message started by: clarence on Feb 18^th, 2005, 10:25am)

Title: Burst my freakin bubble
Post by clarence on Feb 18^th, 2005, 10:25am

I should have known it was too good to be true. I thought my new doc was pretty good after my first appointment. He acted like he had heard of Cluster, and was happy to give me the meds.

Today I go in for a follow up and he says, "So, is it just the migraines you have, or do yhou have tension headaches too?" My heart sank. Told him that I may have migraines, but that the main issue, and what I came to see him about was my Cluster Headaches. He asked me if those centered in the back of my head. I said no, in my freaking eye.

He wants me to try accupuncture. Not sure I will go back. Why can't somebody be at least a little knowledgable about Headaches.

Casey

Title: Re: Burst my freakin bubble
Post by Frank_W on Feb 18^th, 2005, 11:22am

Casey, I totally understand. I went to a Vanderbilt educated neurologist who is a headache specialist. In the exam room, he had a poster of a guy with a flashpoint over one eye, and then columns on either side with the signs and symptoms of cluster headaches. I thought, "This is great!! This guy really knows his stuff!" So then, the azzhole prescribes me oral Imitrex and Depakote for "cluster migraines." I asked him about oxygen, and he said, "Oh... You don't look cyanotic to me."

Good grief!!! I left his office with angry tears in my eyes. I wanted to kick him in the crotch at least a couple dozen times. Grrrrrrrr......

Title: Re: Burst my freakin bubble
Post by broomhilda on Feb 18^th, 2005, 1:07pm

Oh Casey, I am so sorry to hear that...damm doctor >:(

You know, just an idea but if you post on the Canadian board perhaps one of the folks close by could recommend a knowledgeable doc for you, it would save you from shopping aroud for a new one...

Wishing you good luck and pf times,

Andrea

Title: Re: Burst my freakin bubble
Post by sandie99 on Feb 18^th, 2005, 1:38pm

Casey,
I'm sorry to hear that... :(
But I've been there, too. So far I've met 6 neuros and their knowledge about CH has varied indeed. I hope you'll find a doc know knows his/her ch.

Best wishes & PFdays,
Sandie

Title: Re: Burst my freakin bubble
Post by Bob_Johnson on Feb 19^th, 2005, 12:25pm

Casey, this abstract has been posted before and points out that your experience is all too common.
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Headache. 2000 Oct;40(9):730-5. Related Articles, Links

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 [PubMed - indexed for MEDLINE]
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Cluster folks are very much a minority group and so it's not surprising the docs will tend to put their attention/learning to those conditions which they see most often. If we are not near a good headache clinic, we are always open to trying to find a doc who will accept MEDICAL literature which we offer to educate him in how to treat us. (A special quality in many docs, to be sure, but one to search for.)

Title: Re: Burst my freakin bubble
Post by BarbaraD on Feb 20^th, 2005, 3:35am

Dr. Klapper was the doc who did the study on topamax for CH.

I remember that survey, but don't remember the results. Thanks for posting it.

Clarence hang in there. Took me about 5 years to find the "right" neuro, but finally did. There is one out there who will know something. But it is frustrating.

Hugs BD