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Title: Pissed at the physicians! ANY ADVICE? Post by achinghead on Mar 26th, 2003, 9:08am Okay.. I had 5 CH since last nite at around midnite.. needless to say .. very little sleep. I have one script left for the month that my ins will cover.. I just started a new month 3 days ago..so Im thinking this is going to be a long and costly month. I believe Im almost at the peak of my cycle but not really sure. As I stated in a recent post.. I now have an assigned caseworker working on having my ins. co. up my scripts to more than 2 per month providing the physician ok's it. Now heres the problem... I called my physician 3 times in the course of 5 days and have not had a return call. I called again this morning and talked to the receptionist to make an appt to come in. I was informed that my dr is on vacation til the end of next week. I explained to her my headaches are increasing in frequency and intensity and asked if she had received the info that my caseworker had faxed for the dr to fill out and authorize. She very sternly told me that she doubts that the dr will authorize any additional scripts and that SHE (the receptionist)thought that 2 scripts per month was plenty and that she is sure the Dr wont authorize anymore.. WHAT THE HELL!! WHO THE HELL MADE HER THE DR. and whats up with not returning my calls and also I know for a fact that the caseworker faxed the necessary papers last week and they were still in the fax machine.. according to the receptionist.Well... I have made another appt with a different neurologist for tomorrow. I dont feel good about it because Im sure Im going to have to go through all the beginning crap that they all want you to do.. the tests.. the questions.. etc.etc. I feel like Im starting all over again from step 1.. This isnt fair! Have any of you had to go through this crap... am I doing the right thing by starting all over again.. how many times am I going to have to do this... ANY ADVICE WILL BE GREATLY APPRECIATED! |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by cootie on Mar 26th, 2003, 10:08am Maybe this aweful ordeal has set you in the rite direction finding a new nero or doc and maybe NOW (am hopeing for you) you will have a more understanding one and get what you need when you need it and be more comfortable......good luck....a new nero was a GOOD choice....sounds like you were gettin nowhere fast with the other one !!! Good luck.....Pam-Coots-wishin-ya-better-nero-days |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by Ann on Mar 26th, 2003, 10:16am Hi Achinghead! Doesn't your vacationing doctor have someone to cover his patients while he's gone? I wouldn't tear a strip off the receptionist..remember, she's the "holder of the keys" If you piss her off, you might end up having a hard time getting another appointment. As for the neuro, be positive. Give him/her your background and let them know where you are at. I would also give them your caseworker's name and number so that you can get what you need as quickly as possible. I understand your frustrations, but losing you cool will only make your life that much harder. Good luck hugs Ann |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by BarbaraD on Mar 26th, 2003, 11:35am I don't know that I agree about not loosing your cool. With a HA, I'd probably have taken a piece of flesh out of the little B*&^%%! Excuse me today - I have a HA and am not in the best of moods. Enough about me - now to your problem. If the jerk is on vacation, he should have someone to see his patients - go to the office and have a HA there if you have to - that usually gets their attention. But you need to see someone NOW - not after the HAs subside. Do you have a primary doc? If you do CALL HIM/her and tell him/her the problem and let him/her get to the neuro (my primary doc was really good at calling the neuro when we couldn't figure out what to do). But one HA in the neuro's office cut through a lot of red tape for me. My neuro has orders that if I call, I'm to be put through - no matter what he's doing. I don't abuse this and he knows it so the receptionist doesn't hesitate when I tell her to put me through - it's marked on my chart. The main thing with your neuro is to build up a "working relationship" with him and with your primary doc. If you have to Keep looking till you find ones you can work with. Educate them on CH and build up a relationship with them. Like I said, if you have to - go to their offices to have a CH. I didn't do it delibertly, but it sure works. Good luck. Hugs, BD |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by sailpappy on Mar 26th, 2003, 11:53am ;D ;D Hey Barb, Sorry your going through such a hard time, I know the added stress doesn't help either, I think I would be looking for a different Neuro, Keep your cool but you should be in charge, not the Doctor. That is what my own Neuro tells me, they are there to serve you the controlling patient, not to control your life! I hope you find a more compassionate one soon, in the mean time get the Bag of Ice ready and ration out your med as far as you can until you can find help. Pappy |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by Slammy on Mar 26th, 2003, 12:01pm Achinghead, Pappy is absolutely correct! You are the one in control, and you need to find a neuro who will properly support you. Do a litle homework, and find one who is familiar with cluster headaches and has a proactive approach in supporting their CH patients.! Slammy-who-thinks-pam-coots-should-drop-her-megla-hyphenated-name-to-just-pam-since-it-is-such-a-pretty-name-to-get-lost-in-all-that-mire! ;D Slammy 8) |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by sailpappy on Mar 26th, 2003, 12:34pm ;D ;D Thanks for the Support Slammy.! ;D ;D Slammy-didn't Slam me-So I have to- Give a thank You!-Cause I'm Use to just the Opposite-And I have to agree- Slammy-Pammy should just be Pammy-Not-Cootie-Cause she is a good be-so she doesn't have Kooties! ??? :-/ :-X :-X :-* |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by Bob_Johnson on Mar 26th, 2003, 12:40pm Coping with insensitive docs -------------- Posted by Bob Johnson (209.211.41.114) on January 18, 2000 at 15:19:08: A recurring compliant in messages is the insensitivity or unresponsiveness of M.D.s and their failure to believe cluster pain is so bad. Last fall there was a medical conference in Spain in which this problem was addressed by several American and European doctors. Stephen Silberstein, M.D., director of the Jefferson Headache Clinic (Philadelphia) said: "The level of knowledge of how (vascular headaches) affect (patients) is very low in both the United States and Europe." He estimated that HALF of all U.S. physicians do not believe that these headaches are real diseases and some gynecologists regard them as a "trivial issue", making for a special problem for women. Our old buddy, Seymour Diamond, M.D., noted that little is taught about these headaches in medical school, that there are few specialized clinics (which not only treat the sufferer but train physicians) and that the perception about causation still centers on emotional and psychological factors. A Dutch professor of neurology noted that too many European neurologists regard these headaches as "something for hysterical females"--but there have been several messages on ch.com about American neurologists which suggest that this is not a distinctively European attitude. So, if Silberstein is correct, we have a 50/50 chance of ending up with a doc who lacks both the knowledge and the attitude to help us. And I suspect that if you live in a many small towns or rural areas your odds are not this good. The dilemma is, how do you respond, if you find yourself stuck with such a doc, without anger, frustration, and powerlessness being your only responses? First, we don't stay with a doc who cannot help us. Even if locked into a managed care system, there are usually choices possible. Also, call the National Headache Foundation at 1/888/643-5552 and ask for a list of physicians in your state who specialize in headache. A similar, but smaller list, is available at: www.headachecare.com. These docs, at the very least, have identified themselves as having a special interest in treating headache. Second, check out any physician you are considering using. Do not accept the front office statement that the doc treats headache. That he treats doesn't mean he treats with skill or sympathy. It's perfectly appropriate to ask the doc at the first visit--very directly--what do you believe causes cluster?; what are the primary forms of treatment you use? If you get mush, primary reliance on pain medications, comments around depression, anxiety, stress, emotional/personality makeup, there is a good chance you are dealing with someone who is not up to date. Third, if we must work with docs who are well intentioned but not well educated then we help educate them--after educating ourselves. I live in a small town and my primary care is a rheumatologist. I know more about cluster than he does but he respects my judgment when I ask for a specific med because I bring him medical literature which he respects. He knows that I don't abuse meds or him and so we have a mutually beneficial working relationship. But I've had to do my homework. Ch.com is not an adequate source of the medical information needed. Support, sympathy, and encouragement are the strengths here but medical information tends to be fragmented. Sources? 1. links on the left, 2. medical websites such as Mayo Clinic, Johns Hopkins medical center, www.headachedrugs.com, www.headaches.org, www.aash.org, just as a few ideas. 3. Do a search under "books" at Amazon.com using "headache" and you will find 200+ titles, both for the layperson and professional. (Dr. Diamond has a new edition of his book for the layperson.) (Just avoid books with a copyright much older than five years. Information is changing so quickly that older titles are too often not helpful.) My bias is for books because they are more likely to give a coherent, organized, overview of the issues. -------------------------------------------------------------------------------- Follow Ups: F.Y.I..... Chuck C 20:50:59 01/18/00 (0) Great post DocGreg 18:07:44 01/18/00 (0) DJ - Heads Up!! Margi 16:08:07 01/18/00 (0) OUTSTANDING !!!!! drummer 15:47:08 01/18/00 (1) Coping with insesitive docs Piper 16:22:03 01/18/00 (0) |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by achinghead on Mar 26th, 2003, 2:11pm Thanks for the replies so far. I did not talk derogatory towards the receptionist. I do know that she is the so called "key holder" however I do feel that I should have been treated with more respect and yes compassion too. The only ones who can appreciate the pain are the true clusterheads. The professionalism of this particular receptionist was very poor. They should know better especially in the profession theyre in. If they cant treat us patients with more respect then maybe they should seek a job that doesnt require working with people.. especially in the medical field. I also dont need one that is trying to play the role of my Dr. and telling me what SHE thinks is best for my healthcare. Anyhow.... I cant blame the Dr. 100% for not returning my calls because I cant be positive she received the messages however I do know that from the 2nd call on .. I was told that the Dr. had both my home and cell # and was told that she would return my call. So, tomorrow Im off to another.. I sure hope he is as good and caring as my first neuro was. Too bad my old neuro isnt in my ins. plan... Anyhow.. again .. THANK YOU to all who have replied so far and to all who may reply after I post this. I am seriously considering printing this post along with the replies and giving it to my new neuro tomorrow. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by cootie on Mar 26th, 2003, 4:49pm Oh geeze........is this better....I can be annoyin can't I..... Pam ;) |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by subluxationskill on Mar 26th, 2003, 8:06pm Aching head, I do not suffer with ch however I suffered for many years with fibromyalgia and chronic fatigue. I know what you are going through. I got fed up with the medical people they seemed clod and discompassionate and I felt like a number. I said the helll with them and searched for alternatives. I am sure that you have looked and many differnt options in dealing with your condition. I was helped by an upper cervical chiropractor. This is NOT a regular chiropractor it is a very different form of care. It completley changed my life and i have seen all sorts of conditions do better with this care. I think you should check into it. I will give you a couple of websites www.erinelster.com www.blairchiropracticsoc.org I did not have ch but i did suffer with headaches and migraines and I am aware that ch is is quite different. With that said i still believe that this type of care could be of benefit. Good luck. In health drew |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by WendyHowe on Mar 26th, 2003, 8:14pm Drew I thought you'd given up and gone away? Achinghead. If you want to see the view of the CH sufferers of this so called 'treatment' being SOLD here, look at the posts on the medications section. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by WendyHowe on Mar 26th, 2003, 8:19pm P.S. Drew, if you don't want to die from the onslaught of abuse, do not say 'I know what you are going through' to a CH sufferer when you are not one. YOU WILL NEVER KNOW Same as you will never cure a CH sufferer by manipulating his neck. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by don on Mar 26th, 2003, 8:23pm You've already taken the advice I would give you; Get a new Doc. I woulkd venture a bet that most long time sufferers hear have gone back to step 1 with many new docs. I have. At this point in time it's a cross we must bear. That will change, hopefully as Ch becomes a more ACCEPTABLE and understood illness. Have you joined OUCH? |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by subluxationskill on Mar 26th, 2003, 8:39pm wendy, when i said i know what you are going thru i was referring to dealing with doctors that ownt listen. No i do not have ch thank god. Sorry for the misunderstanding. drew |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by WendyHowe on Mar 26th, 2003, 8:43pm Drew Apology accepted. Your suggested treatment for CH........not. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by MKenney on Mar 26th, 2003, 8:49pm Dear Subluxationskil, Albeit that I am just a Newbie to this site, I have read some of your suggestions (a generous word) in other postings. They are virtually unintelligible. Your circumlocution and fuzzy ramblings makes it impossible to believe that you are credible. Quite frankly, if I thought having someone rub or manipulate any part of my body during a cluster episode would be helpful, I would leap at the opportunity. If it were true, I want to talk to my wife about some "special" spots that might alleviate tension. One the other hand, you -are- selling something. Perhaps you have other offerings? I would like a copy of your Amway or Avon catalog since, while they are products I do not use regularly, I can at least depend on their reliability P.S. Pam, please do not change your tag lines; your detractors are just jealous. I find them wonderfully amusing. I don't know how to do it. Mike-who-hasn't-an-effin-clue. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by achinghead on Mar 26th, 2003, 8:58pm Subluxation... thanks but no thanks.. been there done that. When i was first diagnosed with CH.. I went to a chiropractor.. no help with the headaches but the backrub sure felt nice and besides.. I have a beautiful girl that is more than happy to rub my back and my head if asked.. but again.. it doesnt help my CH's. Pappy,,, did you call me Barb?... lmao.. Im not a Barb. Drew and Wendy.. I agree.. dont have someone coming in here claiming they have the cure or the answer to these CH's. The moral support and the ideas I get from here is far more than any Chiropractor could ever give.. and this site is free.. Im hoping tomorrow will be a new beginning to a new Neuro... maybe this will be my last time to start over.. I hope so anyways.. Ill let ya all know.. AGAIN------- THANK YOU ALL! You dont know how much I appreciate your advice. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by tanner on Mar 26th, 2003, 9:08pm drew, old buddy! your still pluggin away. i gotta hand it to ya you sure don't give up easy. whatsa matter, can't drum up any biz the old fashioned way...........you know pay some poor old shmucks to stand up in the church tent and proclaim a miracle brought on by dr.drew. and now your tellin us there are chiropractors and then there are CHIROPRACTORS hmmmmmmmm... what are we supposed to flip you over and look for something between your legs to know the difference? and btw, when i misspell something, it means either that i am trying to make a comic point or i am getting slammed by a CLUSTER HEADACHE!!!!!!! it never means that i am an undereducated used car salesman wannabe trying to pass myself off as a genuine caregiver. tim btw; sorry to any car salesmen, it just came to mind. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by WendyHowe on Mar 26th, 2003, 9:08pm Drew/Subluxationskill Please get the message. Achinghead does not desire your services. This board is a support site for CLUSTERHEADACHE SUFFERERS. We share information about what works for us and what matters for us. It is not here for you to market your services |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by eyes_afire on Mar 26th, 2003, 9:15pm Aaaaahhhhh, just made up some popcorn. Gonna kick back and enjoy the show.... again :D BTW... It's good to hear from you again Barb, sorry you're having a rough time lately. Excellent A+ response from both you and Sailpappy. Way to go. |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by tanner on Mar 26th, 2003, 9:21pm achinghead, i am sorry that in my previous response on this thread i didn't even say hi and wish you pfd's soonest!! it's just that i don't like dr. drew very much! i can only echo what others before me have already said "get a new doc". i don't know where in VA. your town is but i have what seems to be a good neuro (although new to me) out of annapolis. or just e me sometime, if you are close enough we'll go fishin sometime. i am in the st. micaels , md area.... nice to meet you. tim |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by sailpappy on Mar 26th, 2003, 9:23pm ;D ;D Drew, If you want to get a small clue of what the pain we suffer is, go on down to the local 7/11 and buy the biggest, coldest slurpy of your choice, get the really large circumfranced straw, not the little skinny one. Go out to your car and try to drink it in 30 seconds, when the brain freeze starts, just keep going, if you run out of slurpy before 45 minutes has passed, go get another and keep going, but no less than 45 minutes, and I mean the worst part of the brain freeze pain that there is, it has to stay at that level of intensity for the full duration of the 45 minutes for you to even get an inckling of what a Cluster is, now imagine its the whole side of your head, your teeth, your jaw, your skull and your eye. Only then will you even come close to knowing what a cluster headache feels like, remember this is a simulation only and you cannot replicate the nueralgia that takes place in the bone in your face and teeth and skull, nor the white flashes of intense electrical flashes of pain when it is at its apex. Now tell me a neck rub is going to help that. I dare you! Pappy http://www.gifs.net/animate/sungulls.gif http://www.gifs.net/animate/sailboat.gif |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by don on Mar 26th, 2003, 10:03pm I've been offline for what? One month and already there is some non CH pecker head in here peddling bullshit? Chronic fatigue ? Frankly muttonhead, WHO GIVES A FUCK? Want fatigue? Stay up for 6 weeks in blazing pain then you can talk to me about your cravings for a nap! HIT THE FUCKIN ROAD! |
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Title: Re: Pissed at the physicians! ANY ADVICE? Post by jonny on Mar 28th, 2003, 5:33pm Neuro, neuro neuro....Dude ................................jonny |
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