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ski2k
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How do you deal with...
« on: Jun 4th, 2006, 12:54am » |
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...a difficult doctor??? He knows a little bit about clusters, but by no means is an expert. He's been my family doc for many years, and has delivered all three of my children. He's even the one who originally diagnosed me with clusters when I had never heard of them. He told me he had seen a video of a clusterhead having an episode, going through the whole dance and everything, commenting on on how disturbing it was. BUT.... This cycle he seems to be totally unwilling to help me out. No referrals to specialists. No help getting the meds I need approved through my insurance company. No help in getting me oxygen therapy. Nothing.
SO... I took the initiative. I made an appointment with a local pain clinic, only to find out it was yet another "cluster what?" type of situation. Then my family and friends here (CH.com) sent me in the RIGHT direction to the Michigan Head pain and Neurological Institute. I made an appointment for the 12th of June, requested a referral from my doctor so my insurance would cover the visit, and thats when I think I made my mistake.
Since I've made that request, my doctor / doctor's office has been treating my rather oddly. On about the 27th of May, a few days after making my appointment with MHNI, I called my doc to see if he had been able to get me O2 yet, and to ask again if he could authorize my ins. co to cover my meds. I was told by the receptionist "the doctor said let MHNI deal with that. He's not going to do that for you.". OK, whatever, I guess I just have to wait. I contacted my insurance company to find out how long a referral like that would usually take. They told me about 48 hours. So I called and changed my appointment with MHNI to the 5th of June. I called my doc again on the 2nd to see if the referral had gone through yet, and to get a refill on the one and ONLY med that will take the edge off the pain of my ch. I was told the referral STILL had not gone through (over a week now) and no more meds. He wants me to use the tylenol 4 he gave me for the occasional migraine I get to fight my clusters. Can you believe that??? Tylenol 4 for a cluster headache????
Anyway, with my referral still not going through, I had to push my appointment back another week. Another week of hell. Another week of no remorse for a doctor who doesent have to "deal with me" when the next demon comes knocking down my door.
Does anybody have any suggestions??? I'm really up a creek here.
Thank you all, PFDAN to all of you,
SKI
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kayarr
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Re: How do you deal with...
« Reply #1 on: Jun 4th, 2006, 12:59am » |
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God I am so sorry you have to do this. I wish you weren't hurting!
He is an insensitive BASTARD! Not to mention unprofessional. If he oath is to do no harm I think he is breaking it BIG. Is there somewhere you can report this pig....... Maybe you can get a quick referral at an urgency clinic. Then go report the creep.
Hope this works!
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KingOfPain
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Re: How do you deal with...
« Reply #2 on: Jun 4th, 2006, 1:30am » |
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1st off:
Two words for you're current Doctor... You're Fired! 
2nd:
Use the information [arm yourself] here [at CH.com] to show you are proactive in your own treatment & can't be "baffled by bull$hit" by some Doctor.
3rd:
Within your ability, shop around [this takes some dectective work & time] & find a new Doctor that has knowledge of CH. Ask all the questions you need to.
If the new Doctor[s] quizzed is hesitant or unsure of answers, keep shopping.
Edit to add: Ask Doctor [when shopping] upfront if he has a problem referring you to a Neurologist [the better type Doc to see IMHO for CH treatment] if it becomes necessary.
Accepting second best will only set you up for more frustration & lack of correct care.
4th:
Good luck, I hope you get the help you need.
My two pence worth.
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| « Last Edit: Jun 4th, 2006, 1:36am by KingOfPain » |
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We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
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Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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Donna_D.
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Re: How do you deal with...
« Reply #3 on: Jun 4th, 2006, 1:43am » |
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Is this physician your selected Primary Care Physician? If so, select a new one. Then contact your insurance carrier to lodge a formal complaint against him. You CAN do this, this is standard protocol with insurance carriers.
If you would like to contact me via PM I can help you with POSSIBLY getting a referral (depending on the insurance company). There is NO REASON you should have to continue to push back your appointment and suffer needlessly.
I'm a very dangerous patient advocate, as I worked for the insurance companies for decades and know the "ins and outs" of managed care.
I can help, given the opportunity. NO ONE should have to suffer because of red tape.
PM me.
DD
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Jonny
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Re: How do you deal with...
« Reply #4 on: Jun 4th, 2006, 2:56am » |
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on Jun 4th, 2006, 1:43am, Donna_D. wrote:| I'm a very dangerous patient advocate |
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And you can take that to the bank!!!!!!
Listen to Donna, she knows of what she speaks!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BarbaraD
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Re: How do you deal with...
« Reply #5 on: Jun 4th, 2006, 7:21am » |
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Fire the bastard! Then shop around for a new PCP. This time INTERVIEW the doc. Do you know anything about CH - and are you willing to LEARN about them?????
I have a wonderful PCP - he's old enough to know he doesn't know everything but is willing to learn about CH. He asks as many questions of me as I do of him. He and my neuro talk to each other and they've been wonderful to me over the past decade or so.
Keep looking until you find a doc who will learn with you...
Hugs BD
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Paul98
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Re: How do you deal with...
« Reply #6 on: Jun 4th, 2006, 8:27am » |
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Ski-
Bug the shit out of your Dr. for the referral. Make a real LOUD stink! Call them 2-3 times a day if need be. If you become a PITA to them they will gladly refer you. When they do, fire them and find a new Dr.
I would not bother with the T-4. The only thing it will do for a cluster is pack up your colon.
Sorry you are hurting and having a difficult time. Problems with Dr's is all to common for us. I spent 10 years finding a good one. When you do finally find one, let them know it!
Best of luck to you.
-P.
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BMoneeTheMoneeMan
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Re: How do you deal with...
« Reply #7 on: Jun 4th, 2006, 12:28pm » |
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Jesus, sounds like an idiot to me.
IMHO, I would call up your doc and ask his office point blank: Why are you denying me medical attention? Aren't you in the business of providing medical attention?
I would tell them that if their office doesn't fill your scripts and make the phone call immediately, you will file a formal complaint. It's always good to send it in a letter, and if you send it certified, that normally scares people enough to get off their ass.
If you have the time, bug the office several times per day also........and ask them why: WHY havent they done this yet......what are they waiting for?
PF Wishes
BMonee
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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kayarr
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Re: How do you deal with...
« Reply #8 on: Jun 4th, 2006, 12:33pm » |
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Amen to the certified letter!!!!!!
(that's what you pay a lawyer 50.00 for the first time you use tem for a little thing
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ski2k
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Re: How do you deal with...
« Reply #9 on: Jun 4th, 2006, 1:59pm » |
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Thank you all for your concern. One of the problems I'm having here is my Dr. DOES know a little bit about clusters, he always HAS been willing to communicate and learn with me,(I mean hell, he originally diagnosed me, when I had never heard of it!!) and has NEVER been witholding of meds and referrals before. He is a good Dr., but I think he's just given up, or somehow taken it personally that I found a clinic on my own to deal with the problem. I just don't understand why things are so different this cycle.
I do agree with you all. I think its time to find a new doctor. Once he seems to have "given up" there's nothing else he can or will do for me.
Also.... I have been able to PM DonnaD a few times, and I'm expecting to talk to her this afternoon. She has some good ideas, and hopefully can help me get things rolling a little faster. According to Jonny she's "the one"
Thanks all, and PFDAN
Ski
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Charlie
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Re: How do you deal with...
« Reply #10 on: Jun 4th, 2006, 10:33pm » |
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The doctor ain't playing ball nor does he seem to understand the degree of pain associated with CH. Tylenol anything shows that he has no inkling of the severity.
Most doctors here have the little pain chart in the office with something like 5 or six smilies showimg pain facial expressions from moderate to the worst possible pain. Tell him that CH pain would be off the chart. My neurologist understands this. He says that it's very frustrating treating CH.
You need an appointment with a neurologist. Tell yours that a CH referral is your only priority for now. That kind of thing has worked for me. Download some CH stuff from here for him. It can't hurt.
HMOs and the like hate CH but if you file a complaint about meds anyway, you have a good chance for a waiver or two, even if they don't have it on a effen formulary.
Keep up the posts and here is my technique. It helps:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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ski2k
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Re: How do you deal with...
« Reply #11 on: Jun 4th, 2006, 11:43pm » |
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Thanks for the advice Charlie. I've tried the...Um..."Meditation" type of treatment...redirecting your blood flow... in the past. I have found some success with shadows and strong shadows, but once they get full blown, I just can't seem to hold myself together long enough to get it to work. I've also tried both hot and cold. Both just seem to really piss me off when I'm "dancing". I get very disagreeable(to put it nicely) when I'm fighting a demon. I really do appreciate the advice, though. Any more ideas, I'm willing to hear about 'em!!
Thanx!! PFDAN
Adam
ALSO: I talked with DonnaD earlier! What an awesome lady! I think that's the first time I've ever spoken (directly) with anybody who can help me fight the doctor/insuranse troubles I've had over the years. I'm sooo glad I've had a chance to get in touch with her and all of you on the board!!!! I mean...... YOU PEOPLE GET IT !!!! And I think that's what makes the difference!! Jonny: You nailed it! She knows her $hit!
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| « Last Edit: Jun 4th, 2006, 11:54pm by ski2k » |
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Mattrf
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Re: How do you deal with...
« Reply #12 on: Jun 5th, 2006, 1:24pm » |
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Ski you may want to try and do what I did.
I called my doctor and told him I was so depressed that I had been thinking about suicide and was desperate for some help and he immediately did what I wanted him to do.
Sucks to have to resort to this but considering what we all go through it is never to far from the truth and it will get a fast response from him.
Good luck and I hope it works out for you.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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Tara Ann
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Re: How do you deal with...
« Reply #13 on: Jun 5th, 2006, 3:58pm » |
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Shitty, shitty, shitty!!!! So many shitty docs out there, I have zere advice to add except to say that I'm glad Donna's got your back!!!! Hey Donna BTW how you been, long time no "chat".
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Gator
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Re: How do you deal with...
« Reply #14 on: Jun 6th, 2006, 2:55am » |
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on Jun 5th, 2006, 1:24pm, Mattrf wrote:Ski you may want to try and do what I did.
I called my doctor and told him I was so depressed that I had been thinking about suicide and was desperate for some help and he immediately did what I wanted him to do.
Sucks to have to resort to this but considering what we all go through it is never to far from the truth and it will get a fast response from him.
Good luck and I hope it works out for you.
Matt
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While that may work, it can be a dangerous game to play. In some states, if the doctor takes you at your word or if he wants to really play dirty or just teach you a lesson, he can have you locked up long enough for a mental evaluation just to protect you and cover his ass in case you were serious. What do you do then, say "Just kidding?"
How many future doctors would take you as a patient, let alone take you seriously when they saw something like that in your medical records?
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Mattrf
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Re: How do you deal with...
« Reply #15 on: Jun 6th, 2006, 10:31am » |
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Good point, I hadn’t thought about that, I actually wasn’t kidding when I did this and am probably lucky he didn’t lock me up. It did get me in the same day though.
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There is no stronger a person then one who can deal with brain pain and still function.
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ski2k
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Re: How do you deal with...
« Reply #16 on: Jun 8th, 2006, 6:29pm » |
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Good points, both of you. Yes, during an attack, that thought generally does run through our minds, but when it's all over, do we really mean it?!?! No, I've explained all that to my doc before, so I don't wanna call up threatening that. Just my luck I WOULD get committed!! Sure don't want them looking around in MY head! Think they'd make me a permenant resident at the looney bin for sure!!!
PFDAN
Ski
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