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Title: Signs that it's time for new neuro Post by kimh on Jul 30th, 2004, 9:48pm Having gone through this recently i thought i'd share so others have the opportunity to spot trouble: 1. You state clearly rite from the start that you don't wish to pursue medications you have already tried and failed and your neuro already knows this by looking at his paperwork on you -- and he gives a tidy speech that completely ignores what you have just said and prescribes these meds anyway.... 2. You show him the paperwork on oxygen you so diligently printed out from the 'buttons to the left' and he/she behaves as though a huge and painful boil has suddenly erupted on their ass. Their speach may take on the monotone which indicates you are no longer in the room, vague mention of "explosions", while the [hypnotic] monotone drones on about how great you will respond to the meds he/she already knows fucked you up the last time. 3. The monotone ends with him/her penciling in your next appointment, you pay the ass whole, walk out of the room and into your car in a daze, drive home, get in the house and realize how pleasant it would have been to beat the shit of the prick. okay. i'm done. feel betta now. :-* |
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Title: Re: Signs that it's time for new neuro Post by BlueMeanie on Jul 30th, 2004, 9:55pm Sorry to hear of your misfortunes Kim. Try and try again. There's got to be a neuro around that will listen and give you 02 and whatever other prevents & aborts you want to try. PFDAN |
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Title: Re: Signs that it's time for new neuro Post by JDH on Jul 30th, 2004, 10:14pm Kim like the Blue One says, keep trying! It took me about 17 years to find the right guy but once I did it gave me a whole new outlook towards the whole thing. Jim |
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Title: Re: Signs that it's time for new neuro Post by Peppermint on Jul 30th, 2004, 10:34pm Kim... >:( they're asswipes.. What about E-double, or Jhammer... who are their docs? They might have some decent ones. You hit the nail on the head.... fire his ass and find someone who will LISTEN to you and knows their ass from their elbow when it comes to clusters. >:( :P :-X Ok, I'm done... glad you feel better gettin that all out there. :-* :-* Tell Chelsea I said Happy B-Day... we'll see ya next week! |
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Title: Re: Signs that it's time for new neuro Post by ex_pat_asia on Jul 30th, 2004, 11:11pm KIM - RIGHT ON! What a hoot. I am rolling with your acerbic account of what must be an experience that many clusterheads have had. While amusing, your post raises an issue that probably deserves more discussion. I have had inumerable encounters with doctors (and yes...even neurologists) who were less than informed about cluster and still wanted to cling to the all-too-familiar demagogue's posture and specious reasoning your story suggests. As if we didn't have enough to contend with. Of course, that is likely one of the reasons we are all here. We've learned from experience that we cannot completely rely on any single health provider's opinion without questioning what we were told. I guess the key is to keep shopping for a Dr. that will listen and work with you -- a rare bird I know--but worth the extra effort. Another thing we can do is search for a Dr. that specializes in headache. These are perhaps even more rare but the list grows as more and more people and institutions begin to become aware of the huge costs that headache represents. In my experience, headache specialists take a keen interest in us clusterheads because we represent the greatest challenge in terms of diagnosis and treatment. Though these specialists are rare they are out there. My vote for favorite would be for Dr. David Kudrow at the Califirnia Headache Clinic in Encino, California. His father (Lee) founded the clinic and was a clusterhead himself. He and his son have performed seminal studies on the topic and both have lectured at UCLA - Med. Here is a site that lists several others but maybe we should all get into the act and start a list as well. The link is http://headaches.about.com/cs/headacheclinics/a/docs_clinics_I.htm Incidentally, Lee Kudrow wrote my first Rx for trex, and it was only the second one he had written. The other fellow also got the Rx on that same day, and we happened to run into each other at the only drugstore we could find that had it in stock already. What an epiphany trex was then. I miss having the resource of that medical practice since I moved to Asia. Better experiences and PFDAN! |
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Title: Re: Signs that it's time for new neuro Post by Carl_D on Jul 31st, 2004, 12:45am Or how about... Doesn't alter/prescribe any meds, just orders useless tests, and doesn't even take your fricken blood pressure when you arrive? That's the quack I just fired! Like Jim says, it takes time to find the right Neuro. Some get lucky, some deals with idiots like I have in the past who ask way profound dumb questions like: "How am I supposed to know how bad these headaches really are?" It took everything I had to keep from blowing my stack, jumping on him, digging my finger deep into his eye and asking - "Does THIS hurt dumbfuck?" I just responded with gritted teeth "Well if you had a fucking clue what Clusters ARE, you'd know how bad they really are." and walked out and never went back. Still searching here... Carl D |
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Title: Re: Signs that it's time for new neuro Post by Jeepgun on Jul 31st, 2004, 1:22am My neuro, supposedly a Vanderbilt trained neurological specialist specializing in headaches, was an utter and complete ASS. He wouldn't listen, told me ALL ABOUT cluster headaches and then wrote my Depakote script for "cluster migraines." He wouldn't prescribe oxygen, and after talking to him about how cluster headaches differ from migraines, he still wrote my script for ORAL Imitrex. I've never wanted to kick someone in the crotch so badly in my entire life. It was humiliating, frustrating, and I left his office with angry tears in my eyes. My GP, the one who ORIGINALLY diagnosed me with CH, took the medical printout that I got from this site, read it over, and listened to my account of what had happened at the neuro's office, and then said, "Well, I think I can work with you on this." I cried once again, but tears of gratitude and relief. Don't think that you have to have a neurologist! A good general practitioner is worth their weight in gold. |
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Title: Re: Signs that it's time for new neuro Post by UN_SOLVED on Jul 31st, 2004, 3:19am I have 2 great neuro's. Would'nt be here now without them. I believe a good neuro should be 'reachable' 24/7 in times of destress ... like after having 10 attacks a day (and night) for a few days (full force HA's) especially for clusterheads who may need a 'break' NOW ... not next Tuesday after an office visit ! A compassionate neuro will / should try to keep clusterheads who can't get all their needed meds supplied with samples if at all possible. And if you know what works ... they should do all possible to see that is what you get ( a good preventative / abortive treatment should be the main objective ... pain relief) If anyone's neuro is NOT like this ... start looking elsewhere ! Speak your mind ! Unsolved |
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Title: Re: Signs that it's time for new neuro Post by kimh on Jul 31st, 2004, 9:48am I'm sitting here after thumbing through my new Vytra provider book while humming a ho-hummm sort of sigh ;;D Almost like finding a needle in a haystack... Jeepgun - Your post was dead on. I've been to a gazillion "headache specialists".....ya know what? Seems i have developed a skill at rubbing them the wrong way :D Problem is that 1. They are not educated enough about cluster headaches; and 2. They don't seem to want to listen and compromise - they want to be the "DOCTOR" and they want us to be the "PATIENT" -- its the Alice in Wonderland syndrome: Doctor grows larger and larger and patient grows smaller and smaller. I agree with you that in many cases a good GP is often more willing to go the distance for a patient. Perhaps neurologists have special "dickhead" classes that the GPs are not required to take :) Going on week three of cycle - Foul language occurring often now ;;D Have PF day clusterville PS: if i tawk alot and drive everbody nuts, its just the caffeine and nerves 8) |
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Title: Re: Signs that it's time for new neuro Post by Jeepgun on Jul 31st, 2004, 12:07pm Hang in there, Kim! There are good doctors out there, but it sometimes takes a lot of searching and frustration to find one! [smiley=hug.gif] |
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Title: Re: Signs that it's time for new neuro Post by Cerberus on Jul 31st, 2004, 12:43pm ya Kimmie I hear ya sister... I have to call my neuro for an appt. after my GP appt. on Tuesday to see what she wants to do if anything. I asked her about CH and she knows what it is, but I have no idea to what extent. She always says we will worry about those when they come. My neuro is a sleep specialist and so far she has handled things pretty well in other areas of my health, and when this cycle actually comes for certain I hope to gain more information about any research she has done on CH and the effects of sleep disorders on cluster headaches if any....I think that if she has any valuable information that other neurologists generally dont on the subject, I am hoping she might be willing to speak at a convention or maybe at a meet and greet locally on the subject. I guess we will have to wait and see just what she knows....heck, I dont even know how much experience she has with CH yet. Chin up though...sometimes no news is good news... Ramon |
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Title: Re: Signs that it's time for new neuro Post by CarrieBethRN on Jul 31st, 2004, 12:49pm Hey Kim, Yeah I feel ya on this one, too! I went in the opposite direction. I HAD a really great neuro, and then last fall he moved out of the country. :'( Hopefully, though, he'll be coming back after another year and a half maybe. I told him that he has to let me know where he'll be in the US, and I will track him down to be his patient again!! LOL He was just a really great doc. Even if I didn't get better, he never gave up and he gave me lots of hope that we would find something eventually. I should walk away from my current neuro situation, but it is complicated...so again I'm sitting around hoping that it gets better!! Hugz, Carrie :) |
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Title: Re: Signs that it's time for new neuro Post by fubar on Jul 31st, 2004, 1:14pm I must be the luckiest clusterhead alive. My regular doctor is also a clusterhead AND a migraine sufferer. This is awesome for two reasons. One, he can sympathize with my pain and will do almost anything within reason to help me get through a cycle. Two, he can spot a genuine cluster or migraine sufferer without any doubts. This means he knows what neurologist to send me to, and he never balks if I call him up and say I need a prescription for something. He knows I don't mess around with trying to stockpile narcotics or imitrex or anything, and he treats me like a PARTNER in trying to tackle this beast. The neuro he sent me to is simply the best. If anyone here in the SF Bay area needs a doctor, let me know and I'll give you the details. Truly excellent neurologist. I couldn't be happier with his technique and knowledge. He was even (believe it or not) thrilled about the clusterbuster method when I told him I was going to do it, and even more thrilled that it worked for me. He's now discussing it with other doctors in his field. Open minds are easier to teach. -Shawn |
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Title: Re: Signs that it's time for new neuro Post by mynm156 on Jul 31st, 2004, 1:21pm AMEN!! GOOD VIBES! MYNM156 |
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Title: Re: Signs that it's time for new neuro Post by Jonny on Jul 31st, 2004, 1:29pm on 07/31/04 at 13:14:20, fubar wrote:
Im right there with ya dude, my Neuro is my age, rides a harley and drives a vette......its good to have something in common with your Doc. I see him every six months and HE asks me what I want.....LOL........This dude looks right past my tats, unlike some fucks. .....................................jonny |
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Title: Re: Signs that it's time for new neuro Post by Kevin_M on Jul 31st, 2004, 3:27pm Yup, gotta say you strike a chord with this one Kim. I even got the "roll her eyes" at my suggestion that the O2 be upped above her 8Lpm script. "It has been effective for all my other cluster headache patients," is the reply. Declined request for non-rebreather too. Funny though when I had asked twice more at subsequent appointments, I got the same canned reply word for word. It is BS, especially when I tell her it has not been an effective abortive at that level and ask for an increase in trex. She replies no again. Screw it, I got the O2 up to 15Lpm on my own, friend sends non-rebreather right away and I gave her back her trex script because my gp is very liberal with that. Kevin M |
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Title: Re: Signs that it's time for new neuro Post by Robert_C. on Jul 31st, 2004, 4:45pm Kimh, This week, in the middle of the afternoon, I called my Neuro, crying on the phone, telling the nurse that I needed help and that if he didn't call me back shortly I would have to go to the E.R. The only thing that works for me so far, is an injection of Demerol. I'm with Kaiser Hospital and the only (and very easy) thing for the doctor to do is write a paper so I can go to the injection department and get the shot right away. 1/2 hrs later, still no news. I didn't want to go the E.R. because it's always a waste of time. By the time they give you anything (and usually the wrong thing), it's too late. The peak is over. So I called my generalist. Of course you never get to talk to any of them, you can just leave messages to the nurse. I figured that if the Neurologist wouldn't call me back, my doctor could at least write the stupid paper for the shot. My doctor's nurse call me back 10 minutes later saying the my doctor didn't want to get involve in any treatment that the Neuro was giving me. [smiley=huh.gif] [smiley=bash.gif] She told me that she was sorry but that I should probably go to the E.R. She also said that she had call my Neuro, telling him how urgent my situation was. I was hoping that would do something... [smiley=huh.gif] This happened around 2pm. My Neuro called me back at 5h35pm. When I answered, the first thing he said was: "Hi Robert, how can I help you?"... I hanged up. |
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Title: Re: Signs that it's time for new neuro Post by jhammer on Aug 1st, 2004, 10:38am on 07/30/04 at 21:48:18, kimh wrote:
You sure have a way of putting things Kim...I'm still laughing my ass off about this!! Incidently, I think my Neuro actually believed me when I told him that I'm pretty sure I have CH's. Unfortunately he didn't get a chance to try to treat me for them because it took 2 months to get an appt with him...by that time my cycle was over. He did, however, tell me that the next time I get a cluster I should call and speak to him directly and he will make time to see me immeadiately. I think I'm one of the lucky ones too. ~Jake |
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Title: Re: Signs that it's time for new neuro Post by IndianaJohn on Aug 1st, 2004, 12:41pm Great post Kim, I am lucky to have a GP that will work with me too. He admits that he doesn't know much about CH but he surprised me greatly my last visit when we talk as he had obviously educated himself about it. It you have a good GP that will work with you, it can make all the difference. Best wishes, John |
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