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Title: Very Pissed Off Supporter Here!!! Post by Miss_Deleny on Sep 3rd, 2003, 6:15pm As alot of you know, Prense has been trying to get to see his "new" Doc now for over month. First, he was waiting on his medical records to be sent to the Doc .. then waiting on the Doc to call him and let him know when his appointment would be. Doc told him last week that he would hear something by the end of the last week when his appointment would be. Friday comes and goes without a single word from the Doc. Prense comes home for the weekend and suffers through HA after HA like he has been for the past month ... no meds, no preventive, no ANYTHING! This Doc knows this. Well, since Monday was a Holiday, he had to wait until Tuesday, yesterday, before he could call and find out when his appointment was. So, he calls and they frigging tell him his appointment is October 30th, 9:15 am! WTF?? That is 2 months away! This man has not had ANY meds for over a month now since he was taken off of Topamax and they want him to wait until October 30th?? He asked them what he was supposed to do between now and then and all they frigging told him was to wait untill October 30th! >:( They had a referal for him over a month ago and couldnt fit him in to see him?? I want to frigging go postal on her! >:( ~April~ |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Cooked Brain on Sep 3rd, 2003, 6:20pm Hi ya april, sorry to read about the dr... as he clearly doesnt know what he is dealing with only thing left to suggest is go to his office during an attack, that will certainly get his attention! be well and take care, hang in there both of you! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Linda T on Sep 3rd, 2003, 6:32pm I'm sorry that you're having this problem. I agree with Cooked. Get over there and let them see what happens. Also, it may not be the doc. The doc may be totally unaware of what is happening. That happened to me. I couldn't get past the friggin receptionists. I think that we get put to the bottom of the pile - it's only the guy with the headache thing. I started to fax letter directly to my doc and didn't stop until he himself called me. You gotta be aggressive. Good luck. Linda T |
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Title: Re: Very Pissed Off Supporter Here!!! Post by 9erfan on Sep 3rd, 2003, 6:32pm THis was suggested to me yesterday: call the Dr's office back totally frantic and tell them you are afraid Prense is going to do harm to himself. If they still won't budge, let them know you will hold them responsible if he kills himself (you gotta lay it on thick). These people don't care. Meanwhile, bring him to the ER and see what you can get there. They can at least put him on oxygen & give him an immetrex (i never know how to spell that) shot while he's there. They may even write a script. Let us know what happens. I'm so sorry you're going through this! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by cootie on Sep 3rd, 2003, 6:50pm Yeah I agree ya need ta git thru the receptionists straight to the doc......sumhow. I never got a call back fer xrays while back here and pissed me off....got back in with the doc and in his records indicated they DID call me and talk to me....bullshit...I called them "twice" !!!(wasn't ch related but still.....arghhhh !) Even if one of you could jus get him on the phone and talk personally.....but be careful with the 'talk of him hurtin himself'......docs are oblicated (to my knlowledge) on handlein cases like that differently. They'll have em locked up and take all meds.....then do the evaluation deal...which'd get there attention tho I must say....that already happen'd to sumone on here not long ago too. Good luck to ya. Maybe jus tell the doc about his low quality of life goin on rite now.....let the doc take it from there. Pam that is enjoyn the dead cd rom fer the nite cuz I can stay online I'm no expert on this stuff....jus want ya ta get help fast ! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Donna on Sep 3rd, 2003, 6:56pm If he is not in danger of harming himself.....DO NOT say he is.........they could Baker Act him. When he has the next headache call the darned ambulance. He'll get immediate attention and his doctor will be called if insisted on. |
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Title: Re: Very Pissed Off Supporter Here!!! Post by stevegeebe on Sep 3rd, 2003, 7:11pm April, I agree with the "get aggressive approach". How can a Dr. be that busy? My fear is that he has no idea what you guys are up against and will be just as clueless when you finally get to see him/her. Godd luck. Steve G |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Lori on Sep 3rd, 2003, 7:12pm Can't you go to a different doc? I would at this point (I'm sorry I don't know your whole situation) just call and find a doc that can see him immediately and go in requesting treatment. If you haven't done so, click on the OUCH button (on the left) click on Cluster Help then click on Medications. Print and take this info to the doc and demand if you must that they start him on some preventative and give scripts for an abortive. If one doc won't help, you need to go elsewhere. Like I said, I'm sorry I don't know what you all have tried or how many docs you've been to, so if you've done all I've suggested, I'm sorry and hope someone else can suggest something else. |
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Title: Re: Very Pissed Off Supporter Here!!! Post by OneEyeBlind on Sep 3rd, 2003, 7:20pm I sat in my docs office rocking and a rolling with a kip 7 ......... she saw me right away. ;) Try that .... if that don't work .... try the ER. Good luck !!!!!!!! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by taraann on Sep 3rd, 2003, 7:21pm Yeah if he is not in danger of harming himself DO NOT say he is.....they can involuntarily admit him to a physch ward! But I do agree with driving the docs office crazy with phone calls, visits, faxes and whatever you can think of. I'm so sorry to hear about what he is going through. |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Donna on Sep 3rd, 2003, 7:37pm Most doctors do not appreciate office visits without appointments.....they act like you're taking advantage of them...........I hope you have more luck with that approach than some people that I know who did that. I know how frustrating this is. I wish you luck in whatever you do. Hugs and Prayers |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Miss_Deleny on Sep 3rd, 2003, 7:45pm He is in the military so he has to go where "they" decide to send him. He was at first refered to a local, in town, Nero, that over medicated him (had him on topamax from 25mg to 300mg in less than 3 weeks) but wouldn't even consider giving him oxygen or anything else to ease the pain except for maxalt which a sugar tablet would work just as good on him. It took a while and he finally talked the military people to refer him somewhere else, that is where this "headache specialist" came into play. From what he has told me, he doesn't talk to the receptionist, but to the Doc herself. I may be wrong but I do believe that is what he told me. Her office is 4 hours away from where we live, he just happens to be going to school there in that city ... and according to the referal that the military sent, he was supposed to have had an appointment BEFORE he finished his schooling which he graduates from next Thursday. All of my experiences with Doctors, I know that they leave certain times open for "emergencies" or to work someone in ... never have I ever been told that I could not be seen if I felt that it was urgent! THAT is what pisses me off the most! If he was not having so many HA's now and going through so much pain, I would not be as pissed, but with him being chronic, he is always in pain. He is trying to get into the military hospital there and get "something" until he can be seen by a "knowledgable" Doctor. I think it is harder on me now because he is there, in pain and I'm not there to help him. :'( I'm sorry, I really should not be bitching like this knowing that some of you are worse off and in more pain than we are atm, but ... damnit! :'( :'( :'( :'( :'( :'( |
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Title: Re: Very Pissed Off Supporter Here!!! Post by cootie on Sep 3rd, 2003, 9:06pm Feel free ta rant and rave Miss_Deleny....that's screw'd up he has ta go thru all this crap and play this waiting game when in such pain daily ! Tell the doc he fly's a jet and his route is rite over the docs house......well....nice try wasn't it ? Good luck ! Pam that doesn't fly over anyones house |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Miss_Deleny on Sep 3rd, 2003, 9:56pm Just got off of the phone with Christopher (Prense) and he had some VERY good news for me! :D He went to the military hospital there where he is and saw a PA there that seems to know a bit about CH. He said he went in armed with printouts of information for whomever he was to see. When he saw the PA there, he told him that he had CH and what the situation was with the "specialist" that he was supposed to see and told him that he was very informed about CH and the medicines that are used and if the doc wanted him to, he could tell him ALL about it. Well, the doc told him to go right ahead and tell him what he knew. So, Christopher proceeded to tell him about Ch and what he has had prescribed to him, what worked and what didn't, what the general CH suffers suggested and didnt. Then he told him what HE wanted. The Doc listened to him and after about 10 minutes he told Christopher that he was going to put him back on verapamil (sp) (360mg) and gave him 8 imitrex injection samples with 3 refills and told him he would do the paperwork needed to be done for the military insurance to try and get him oxygen. Christopher gave himself the first shot of imitrex this evening and said that it worked in abut 15 minutes! He is PF and no shadows! I am so thankful that PA knew about CH and wasnt just another quack trying to give out sugar pills. And thank you all for listening to me rant, rave, cuss, stomp my feet and for your suggestions and kind words. Cootie ... I told Christopher what you said about flying over that Doc's house and he just laughed ... even got me tickled. Was so great to hear him laugh! :D ~April~ |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Lori on Sep 3rd, 2003, 10:05pm I am sorry this is so difficult and that the doctors are being so difficult. Isn't there a resource on the OUCH site somewhere that people can get someone to intervene and have a chat with the doctors office?? Someone will have to jump in here because I am not sure here. I wish you both the best with this situation and I hope someone else here can give you some help. |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Leesa on Sep 4th, 2003, 8:09am Mizz D, glad to hear the military docs are givin yall some reliefe! WOOOHOOOOOO I hope and pray the doc at the military hospital will be as good as the one Dave has. He got his O2 the very next day after seein the doc. As far as the other doc yall are supposted to see in Oct. IMHO I would keep the app. and go for broke, take all the info and all the stuff from the military docs and MAKE him/her listen to whats going on. Most of the time the "bitch" tude is the only way to go to get things done and get it done RIGHT! Keep tough and stay strong. Be of luck to ya. Uploading the truck load of whoop ass, Leesa |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Bob P on Sep 4th, 2003, 9:38am I've used the suicide approach with great success. Called for an apointment once and was given a date two weeks down the road. I casually mentioned that I didn't think I could wait that long and would probably put a gun to head before that. I was given an appointment for 2 hours after I hung up the phone. |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Cooked Brain on Sep 4th, 2003, 9:39am That is GREAT NEWS April!!! ;D it's the first and biggest step he had to overcome, from now on it will only get better :) pfdan |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Linda T on Sep 4th, 2003, 9:43am Great news. I hope everything from here on out goes well for Christopher. Don't worry about the ranting, etc. We've all done it! Wishing you all PFDAN always, Linda T. |
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Title: Re: Very Pissed Off Supporter Here!!! Post by STABBINGPAIN on Sep 4th, 2003, 10:03am I had the same happen to me yesterday . I called both Dr.'s reg. and Neruo.The regular doc told me he had to releave me because he didnt know what else to do for me . in the mean time Im having tremors so bad from this topamax. didnt feel right . He told me to call the neuro who put me on the topamax and ask what to do. I called 2 times yesterday and once this morning. Im not sure if if this side effect or not I dont feel right . Im concerned. he hasnt called at all . . IM right there with you . The lady at the desk said she gave him the message. If someone like you needed meds, medical attention or advice no matter what at some point in time we should get a call from someone in the office. the DR. etc.!!!! Un real . it really sucks |
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Title: Re: Very Pissed Off Supporter Here!!! Post by OneEyeBlind on Sep 4th, 2003, 2:00pm Glad to hear his appt with the doc went so well. Who says we need a specialist .... armed with info we are better informed than most docs !!! Congrats ! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by cathy on Sep 4th, 2003, 2:07pm Yeah what she just said.... ;D Cathy |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Lori on Sep 4th, 2003, 5:06pm Great news..sounds like things are looking up! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Prense on Sep 5th, 2003, 9:37pm Thank you everyone and a special thanks to my sweetie! As far as the neuro goes, I never did speak with her...it was always "receptionists". Actually, it was not even her receptionist...all appointments at this university are scheduled through a central clinic. I am keeping the appointment with her as she is a HA specialist. More specifically, she runs the HA branch of this university. The only time issue I really had was in getting some sort of relief. Now that I have that, I have no problems waiting until the end of October for the appointment. I was surprised at the PA that prescribed the imitrex...he actually did the paperwork to try to get our insurance company to authorize the O2 script. I hope to have that in hand by the end of next week. At first he said that the insurance company would not allow the O2 because I had no history of success with it. I simply asked him, "how the hell would I have a history of success with O2 if it cannot be prescribed for me?" I went on to inform him that the O2 would hopefully "stretch the imitrex out and help to prevent rebound HAs (assuming I would get those) He said, "oh, ok...I'll talk to the insurance folks then." The rest is history. Thanks a ton guys and gals! Without your assistance, I would have certainly sucked it up and suffered through until my original appointment. Everyone here has helped me figure out how to deal with these docs more effectively. Sincerely, Chris |
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Title: Re: Very Pissed Off Supporter Here!!! Post by Cooked Brain on Sep 6th, 2003, 8:47am Hi there chris! so happy to read that you have some good things coming your way ;D hope it will all be over (or at least a lot better) soon... This thursday I went breakdancing for the first time in three years again and had NO headache! I got a bit sore in the musscles though ;D I could not have dreamt myself doing this only a month ago! best of luck to you both and hang in there, remember: it WILL get better! |
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Title: Re: Very Pissed Off Supporter Here!!! Post by UnsolvedEquation on Sep 7th, 2003, 7:45pm When I first bagan Ch'in...I really didn't know what it was, and I couldn't get into a doctors office right away...so I went to the ER everyday for Demerol. They told me "You can't come here everyday" and I said "OK, I'll see ya tomorrow" !! ;D ;D ;D They began to hate me. After a while ... it was like a drive thru Demerol shot ;D ;D ;D |
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