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Title: Education please Post by ctygrl1965 on Dec 20th, 2007, 10:29pm How can we get Dr's and nurses more educated on cluster headaches? One of the most frustrating things is to have a Dr claim you have a migraine. As soon as they've made that diagnosis they're not willing to listen to anything. It doesn't matter what information you bring or what you have to say. Today I had to bring my husband to the ER. He had a "break through" headache yesterday and all hell broke loose today. He went through two E cylinders in 3 hours and still wasn't able to break it. Thank God they knocked him out nine ways to Sunday but the entire experience was (forgive me) a cluster! I was armed and ready with literature, pictures and my own knowledge base. I've been a supporter for 16 years and my husband has been a clusterhead for 25 years. You would think with the combined experience someone would be grateful for your knowledge. Not today. The nurse tried to take away his nonrebreather and give him a cannula @ 2 ltrs. I think security was close to being called but I won his nonrebreather back! She gave me the evil eye the rest of the time. Bring it on! I ain't skeered! AAAAAHHHHH. Our dischaarge papers were care and feeding of your migraine. Well, were back home and after sleeping 4 hours he seems to be doing very well. He has an appt. with the nuro the day after Christmas. Thanks for all your support. Have a Merry and Blessed Holiday! |
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Title: Re: Education please Post by DennisM1045 on Dec 21st, 2007, 8:32am Way to keep fighting Girl. Hopefully you'll do better with the Neuro. Merry Christmas to you both. -Dennis- |
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Title: Re: Education please Post by Bob_Johnson on Dec 21st, 2007, 9:20am Years of messages and other med literature articles keep saying: ER is the wrong place to get/expect care for headache! The very nature of ER medicine is focused on the treating/knowing about, those problems which are most likely to be seen. Compounding this limitation is that basic medical education is extremely limited on headache and so, unless a physician chooses to seek broader training/experience their life experience does not prepare them for US. Answer: get established with an M.D. who has the experience/knowledge/emotional orientation to work with the complexity of headache. ---------- From Headache Less Is Not More: Underutilization of Headache Medications in a University Hospital Emergency Department Posted 10/11/2007 Madhavi X. Gupta, MD; Stephen D. Silberstein, MD; William B. Young, MD; Mary Hopkins, RN; Bernard L. Lopez, MD; Gregory P. Samsa, PhD Abstract Objective: To gain knowledge of episodic headache patients who seek care at an urban university emergency department (ED), to evaluate the care they receive and to examine the impact of the ED on these headache patients. Background: In the United States, 1% of all ED visits are for the chief complaint of headache. The ED has a significant role in the identification and treatment of primary headache sufferers. Methods: Patients who presented to the ED with a chief complaint of headache were prospectively administered a patient survey, the PRIME-MD Patient Health Questionnaire, and MIDAS. Inclusion criteria: any patient 18 years or older with a nontraumatic headache of less than 1 month in duration. The patients included had episodic headache. Exclusion criteria: any patient with a history of a lumbar puncture or epidural procedure in the previous 7 days or those with chronic daily headache. Patients who met criteria were asked questions about headache type, health care utilization, satisfaction, co-morbid illnesses, and demographics. A neurologist independently reviewed the ED chart. Results: A total of 219 of 364 patients were eligible and consented. The median age was 34. Most (147, 67.1%) were women; 104 (47.5%) were diagnosed with migraine or probable migraine by chart review; 36% did not have enough information for a neurologist to code a diagnosis. Relatively few headache-specific medications were used 24 hours prior to ED arrival. Only 5% of patients were on headache-preventive medication. Patients commonly received neuroleptics (dopamine antagonists 98 [67.5%]) or opioids (93 [64.1%]) in the ED; however, 74 (33.8%) subjects received neither medication nor IV fluids. Upon leaving the ED, 21.8% were pain free and 89 (40.6%) patients were asked to follow-up with a physician. A total of 137 (62.6%) patients had no documented discharge medications. One person received a prescription for a preventive medication. Sixty-four percent of those who returned the diary reported that the headache returned within 24 hours of leaving the ED. CONCLUSIONS: MIGRAINE ICHD-2 CRITERIA ARE UNDERUSED, AND PATIENTS ARE UNDERTREATED IN THE ED. MANY PATIENTS LEAVE WITHOUT A DISCHARGE DIAGNOSIS, OUTPATIENT MEDICATIONS, OR INSTRUCTIONS. ED PHYSICIANS COULD HELP IDENTIFY THE MIGRAINEURS AND CHANNEL THEM TOWARD APPROPRIATE OUTPATIENT TREATMENT. |
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Title: Re: Education please Post by Guiseppi on Dec 21st, 2007, 9:56am Since the odds of finding an expert on CH are relatively small, find an open minded doctor who knows nothing about them! I have a nurse practitioner, (Kaiser!!!), who listens to everythng I bring her. Within reason and state law!!!,,she lets me set up my treatment program. I'll take an open mind over a supposed expert any day! Good luck with the neuro. Guiseppi |
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Title: Re: Education please Post by George_J on Dec 21st, 2007, 10:27am on 12/21/07 at 09:56:58, Guiseppi wrote:
I completely agree. I was first diagnosed by a very perceptive family doctor in the late 1960's. Although the medications I was prescribed at that time didn't work, it's hard to fault him--nothing much worked on these in the 1960's. He knew right away what it was, and took the time to pull out a Merck index and show me the potential side-effects of the medications he was prescribing. I suspect that he'd either paid attention in medical school to the training in headache that he'd received, or he'd actually run across one of us before. I got lucky. Best, George |
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Title: Re: Education please Post by Miz_D on Dec 21st, 2007, 3:11pm on 12/21/07 at 09:56:58, Guiseppi wrote:
I am currently doing this as the neuro I have been seeing these last few months is a complete moron. From my first appointment with him its been an uphill battle...he continually refers to my CH attacks (that's what I call them instead of 'Headaches') as migraines which I of course correct him on, he tried telling me that maybe I didn't have CH at all when I have 6 years of consult notes from my old neuro in Canada (who was awesome) and they are in my file, besides having been diagnosed 8 years ago when they began, and his attitude towards things like this website are ignorant as well as rude. He insisted that my current CH crisis was due to my abortive meds instead of my preventatives which was inaccurate and put me on narcotics which, when I had a terrible adverse reaction to them, wouldn't return my husbands phone calls. I am a chronic sufferer and this last crisis has been a nightmare for several reasons, many of which have to do with the ignorance and ineptitude of the medical professionals I am limited to seeing where I am living. I never thought anything could be worse than experiencing up to 16 attacks in a day...now I know better. Anyhow, now I am working with the GP and trying to help educate her about my condition. Its slow going because truly, unless someone is really interested or curious about CH, they aren't going to bother learning about it. The wonderful news is that my attacks are slowing down and reducing in their frequency, I'm back on medication that doesn't torture me with side effects and at the end of my last appointment with said neuro he told me he was leaving and going back to Oahu and that a different neuro would be coming and that is who my next appointment is with....YEAH! I definately think education is a must. Keep the faith ctygrl and thanks for giving me a thread to vent... Happy Holidays, Danielle |
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Title: Re: Education please Post by BarbaraD on Dec 23rd, 2007, 4:11am Ya know, if I had one wish, it'd be that docs wake up on Jan 1st and say, "Gee, I think I'll start listening to my patients! I might learn something." A nice dream...... It really does get disgusting doesn't it? But hang in there. My old GP (retired) referred to my CH as "histimine headaches" (I never said anything cause he did everything he could to help me and did listen) cause that's what they called them when he was in medical school. I was one of the lucky ones - my GP and neuro work with me and do everything they can to help. We've been thru some really bad times, but they've both listened and been there for me. Since my GP retired, I'm in the process of breaking in a NEW GP, but he'll come around (I've known him since he got out of med school) and my neuro is a phone call away and is wonderful. You are right - education is the key. Finding a doctor who is willing to listen to you is rare, but they are out there. You just have to interview them until you find the one who is "right" for you. I won't even tell you how many "experts" I went thru before I found the "right" one. PF days to US all in 2008... Hugs BD |
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Title: Re: Education please Post by Chappy on Dec 23rd, 2007, 8:14pm I was flipping channels about a year ago when I came across a show called Mystery Diagnosis on Discovery Health. The episode wasnabout a young man whose life was shattered by debilitating unexplained pain in his knees. Docs said "arthritis," kept treating for that. Three years later another doc found out it was just gout, and with the right meds he was back to normal. My wife came out and found me crying, and rewound and watched the episode. I was currently being treated by a pain doc for "unknown pain" with narcs, and my wife and docs were doubting there was anything physically wrong with me. After seeing that show, she spent two months researching new insurance to find a PPO and said we were going to visit every specialist out there until we found a doc that knew what was wrong. She started watching every mystery diagnosis show, and would setup appointments with whatever specialist had found the answer for someone who sounded like me. Finally, she read a testimonial on Mayos site of a similar sounding case, and called and begged my way in. We racked up a huge bill, saw dozens of docs (a GI who asked if I heard voices), and the GP told me I just needed to lose weight, but now $30k and 7 months later, the headache fellow in neurology, dr Vargas, finally gave me the answer. Within a week I've got preventives that are working, abortives, and a huge J tank of oxygen, and I'm having some relatively pain free days. So when I meet someone who is frustrated with their medical care, I tell them (if possible) don't waste time with docs that aren't listening, and remember that you are the customer. I think if I was dealing with a neuro who wanted to take my O2 away, I would say "That's not an option - If you don't want to treat me in a way that I know works, I won't waste your time and I'll find someone who does." |
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