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Cluster Headache Help and Support >> Getting to Know Ya >> just an intro
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Message started by mcamp on Aug 6th, 2009 at 3:04am

Title: just an intro
Post by mcamp on Aug 6th, 2009 at 3:04am
new to the board, a clusterhead for 40 years, maybe. I say maybe because my headaches started as a child after a severe head injury and they might not have been clusters at that time. I have had one year of painfree life during that last 15 years, and for the last 2 years my CH has been daily at 3pm 6pm and 3am. Like most of you, the run around from neurologist is almost worse than the headache and at the least it seems to make the CH worse than it should be. I am currently seeing a new Neuro in a long line of Neuro's and I always got my fingers crossed that this one will help me in a meaningful way.

hope you all have many PF days. :)

Title: Re: just an intro
Post by Bob_Johnson on Aug 6th, 2009 at 6:02am
Your experience with docs is all too common. Here is a major reason why:

Medical education in headache
Posted 9/26/07, MEDSCAPE  

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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.
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"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."
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If you have the options of seeking anew, sharpen your search for a well training person.

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE  On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.





Title: Re: just an intro
Post by Iddy on Aug 6th, 2009 at 8:08pm
As always ,Bob has given you a great way to begin your search for a way to fight back.

Have you ever tried o2? Read the link on the left. It has proven a savior for many of us.

All the best :)  

Title: Re: just an intro
Post by mcamp on Aug 6th, 2009 at 11:51pm
thanks Bob for the abundance of info, it's greatly appreciated. And Iddy, I have not tried 02 yet, just to try it, say at an ER would cost me $100 for the visit, and if it worked i would be bummed because I don't think I could afford it. The neuro visit was a real bummer today, I gave them a list of things I have tried and the DR basically ignored it and prescribed something I have already tried (i did not fill the script though). I told them I was not expecting any miracles, but that I really needed some help coping with the daily pain. unfortunately it was like talking to a wall. I do see a physicain assistant that has been eager to help me and always willing to listen to me so I do fell blessed by that.

everybody have a CH free day for me

love you all and glad I found this site:) :D

Title: Re: just an intro
Post by vietvet2tours on Aug 7th, 2009 at 2:53pm

wrote on Aug 6th, 2009 at 11:51pm:
thanks Bob for the abundance of info, it's greatly appreciated. And Iddy, I have not tried 02 yet, just to try it, say at an ER would cost me $100 for the visit, and if it worked i would be bummed because I don't think I could afford it. The neuro visit was a real bummer today, I gave them a list of things I have tried and the DR basically ignored it and prescribed something I have already tried (i did not fill the script though). I told them I was not expecting any miracles, but that I really needed some help coping with the daily pain. unfortunately it was like talking to a wall. I do see a physicain assistant that has been eager to help me and always willing to listen to me so I do fell blessed by that.

everybody have a CH free day for me

love you all and glad I found this site:) :D

If it worked you would be bummed?  That's the lamest excuse for doing nothing I ever heard.  It costs around three hundred bucks for a welders tank,regulator and mask.  I killed my first cluster and felt like the world had been lifted from my shoulders.  Don't suffer needlessly.

          Potter

Title: Re: just an intro
Post by Val_ on Aug 7th, 2009 at 3:01pm

Potter wrote on Aug 7th, 2009 at 2:53pm:

wrote on Aug 6th, 2009 at 11:51pm:
thanks Bob for the abundance of info, it's greatly appreciated. And Iddy, I have not tried 02 yet, just to try it, say at an ER would cost me $100 for the visit, and if it worked i would be bummed because I don't think I could afford it. The neuro visit was a real bummer today, I gave them a list of things I have tried and the DR basically ignored it and prescribed something I have already tried (i did not fill the script though). I told them I was not expecting any miracles, but that I really needed some help coping with the daily pain. unfortunately it was like talking to a wall. I do see a physicain assistant that has been eager to help me and always willing to listen to me so I do fell blessed by that.

everybody have a CH free day for me

love you all and glad I found this site:) :D

If it worked you would be bummed?  That's the lamest excuse for doing nothing I ever heard.  It costs around three hundred bucks for a welders tank,regulator and mask.  I killed my first cluster and felt like the world had been lifted from my shoulders.  Don't suffer needlessly.

          Potter

Potter's right - it costs less than most meds without insurance, and you get NO SIDE EFFECTS - just pain relief!!!!  

Val

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