Has anyone noticed whether docs are better informed in the past 5 years about CH than before?

Between 1990 and 2002, I had 4-week cycles, with 3 or 4 years of pain-free time in between.  I saw a doc for the first time in 2002 when I searched my symptoms on the internet and realized that my headaches were different than other people's headaches.  

I went into the doc's office with the name "cluster headache," and the doc obviously did not know much about them because she dismissed me right away.  "Can't be clusters, because 99% of cluster sufferers are men."  Didn't matter that I had all the symptoms.  According to the doc, because I didn't have auras or light sensitivity, I didn't have migraines, and to her, no other headache is more serious than a migraine, so mine must not be so bad.  She sent me away with a prescription for 800 mg ibuprofen.

This time around, 3 weeks ago, I went to a doc, who immediately sent a request to neurology for consultation.  Even though it took 2 weeks for the doc to get back to me because she went on vacation (b*tch!), but it was clear that this doc took my symptoms seriously enough to ask neurology about it.  

Neurology got back to her with the CH diagnosis, and the Maxalt and Verapamil as the initial meds to be prescribed.  Even though they were totally slackers in getting back to me, they were still right on the money, and didn't misdiagnose me with something else.

Have other long-suffering-but-new-diagnosis clusterheads had the same impression about their docs?

I have the feeling it is being better recognized marginally.  My current doc has a few patients that suffer from CH and did respond well to my need for a referal to a neuro.  Her support staff is another story; I was told she was going to put a rush on the referal.  Two weeks later I got my referal.  Making an appointment with the neuro was no fun either.  By the time I finally saw the neuro my cycle was coming to an end.  My primary was able set me up with everything I needed in the way of O2, verap, and triptans before seeing him though.  

I did need to go to the ER with a K10 during the last cycle and they were pretty useless.  The discharge paperwork even listed my diagnosis as migraine.  Idiots!!!  

Made me think of my previous doc.  He was treating me for migraines.  After doing some home work it was brought to his attention that the syptoms were not migraine but CH.  He was pissed, how dare you attitude and all that.  Had visits to the ER during that time and without even mentioning CH was diagonsed with CH.  Was told to talk to my doc about it in the ER and he still refused to believe it.  What a D***!!!  Glad to say he is no longer my doc...    

My first clusters happened about 13 years ago, and even though I described the exact symptoms I read about today on the internet, nobody seemed to be able to put 2 and 2 together. I did the rounds with x-rays, CTs, MRIs, I went to the dentist for an emergency visit because they were sure it was an abscess. They spent 6 weeks trying to figure out what it was then they just vanished.

But nowadays more doctors know the symptoms, and know what to do to help those of us who suffer. One of my co-workers also suffers from them, and his doctor knows what to do. My prior physician (who knew about them) decided to retire, but my new doc knew what it was and how to treat it.

The internet is a wonderful thing. It is an information highway that can help sufferers like us.

I was diagnosed rather quickly-  but getting a doctor who understood cluster headaches and effective treatments took me 14 years!

Kelly

OUCH has been instrumental in getting the word out to doctors. Also the internet has been a Godsend in my opinion. I can't believe the sheer numbers of new people on the board who are getting diagnosed early on. It seems to me we're making progress. :)

Guiseppi

Exactly, Guiseppi, the internet has indeed been a godsend. Having CH since my last year in high school, some 15/16 years that is, I've never met anyone with this Beast too. I knew it was rare, but there is also nothing to find about in a library, therefor this cycle I started looking on the web, hoping to find at least a little help in dealing with it. Well, what do ya know? I found you guys, and have been so much help in so  many ways.... thanx.

So yes, I'm sure the fact we stand stronger in numbers, be it via the internet, helps build our case.

Regards, Pascal.

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]

Oh Yes!!! My GP said it was migraine and would give me vicodine spelling?)  which did absolutely nothing and I believe he was the one who prescribed me Fiorecet.  I would call his service at all hours of the night and he would just send me to the ER where they would inject me with the pain killer of the month.  I went to a neuro cuz I was afraid there was something more than just a headache going on.  He, too, diagnosed me with migraine and prescribed imitrez which was new at the time and did nothing as well as pain killers.

The ER docs were just as bad, accusing me of being a junkie looking for a fix.  And that was when one of my family members was in the room with me.  I was so pissed off I told the uneducated doc that I wanted to stick him in the eye with a hot poker and all over the head while he was sleeping and not stop for three hours and do that every single day.  I surprised I didn't get kicked out of the hospital.