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pls1115

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why wont they listen
Mar 16^th, 2010 at 4:00pm

i just hung the phone up with my neuro and asked them to change me meds from topamax to verapremil. and asked if i could bring them the papers on the o2 and they said we do not write o2 scripts we are not that kind of dr. i said i understand that. i said i do not have the kind of disease that requires me to see a pulmonary dr either. but i need o2. and i need my neuro to write the script and i have the proper papers for him. can i bring them by. the secretary laughed. not very buisness like.im fighting this all the way still and im going to win this battle not only with the beast but with the neuro too. im in control. no one else. this is my damn life there playing with and im tired of it. its been three weeks strait now and im angry.venting is good and this is the best place for it thanks guys and gals.im now waiting for them to call me back well see what they say. hopefully its what i want to hear. but like so many times before i know its a shot in the dark. i have 2 pills left and no shots now. bummer. o2 would be nice to try if i could get some. my primary was useless and if my neuro doesnt help off to seek a new one like i said before im seeing a specialist but not till september and thats just too far away for me to wait in pain. im just not that paitient. at least not this cycle its a vicious one. and with me stressing the beast is quite aware of that. thanks for listening and letting me vent. paula

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Loric

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Re: why wont they listen
Reply #1 - Mar 16^th, 2010 at 5:20pm

You are entitled to second opinions - for both your GP and your Neuro. They'll write it out as prescrips or something with your insurance. Clarify with the insurance, but get on the phone and get it done ASAP and get into a different office.

Those people are morons and you're going to have to fire them and file complaints against them. They deserve it.

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Loric

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Re: why wont they listen
Reply #2 - Mar 16^th, 2010 at 5:24pm

Just to clarify - and maybe help you feel a little better - my first major go round with Clusters my GP the second week in went on vacation leaving me with a Nurse Practitioner who didn't want to prescribe higher dosage meds or more injectables. It came down to me flat out having the office banish her from being able to touch my file under HIPPA reqs - as she was the one my file would default to in the case that my doctor was out - to get another Dr in the office to see me on an "emergency" basis to get a new perscription and consult done.

So, fight those people, and when my GP came back from the Bahamas and heard about what went down with the Nurse Practitioner and the crap she gave me, lets just say it was not pretty from what I heard murmured from the other nurses.

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« Last Edit: Mar 16^th, 2010 at 5:25pm by Loric »

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Bob Johnson

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Re: why wont they listen
Reply #3 - Mar 16^th, 2010 at 5:51pm

Let's start all over again. Walking away is often the best defense, surely the best way to protect your sanity!

Some years ago, I moved into a smallish city and spent the first six-months asking everone I met for the firsts time: who is your doctor? why?

Very quickly, the same name came to the top of the list--over and over. So guess where I went?

And what did I get? He would come into the exam room, sit down, cross his leg with note pad and pen, and be silent! What I had said why I was there--he went into action. When he retired (sigh!) he passed me onto a partner who was a younger version of him. And I found a doc who was so receptive, open, helpful that--believe me!--when I moved from that city he wrote me a letter to tell me that you would miss ME, and that I had taught him.

I know that's VERY rare--but searching for a personality style may be more important than searching for a degree or speciality.

As this stage, worth considering.

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« Last Edit: Mar 16^th, 2010 at 5:53pm by Bob Johnson »

Bob Johnson

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Linda_Howell

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Re: why wont they listen
Reply #4 - Mar 16^th, 2010 at 6:37pm

Paula, you and I have talked via PM. Please listen to what Bob Johnson is saying.

Quote:

and they said we do not write o2 scripts we are not that kind of dr. i said i understand that.

A Neuro that says he cannot prescribe 02 is an idiot. Fire him pronto! A GP or any Dr. with an MD after his name can prescribe 02. DO NOT ever again say you understand that!!!!!!!!!!!!!!!!!!!!!!!!

And then there is welders 02.... Wink

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Hurt people.....hurt people. Think about it.

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donna mae CH.com Junior Offline I Love CH.com! Posts: 67 Bolingbrook, Il Gender:	Re: why wont they listen Reply #5 - Mar 16^th, 2010 at 6:47pm hummmm! I'm wondering what you must do to get a permit for oxygen from a welding supply co. Guess it's worth asking how do I get one? Where? I might be in this same situation and need to know. Anyone know? Donna Mae
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bejeeber

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Re: why wont they listen
Reply #6 - Mar 16^th, 2010 at 6:54pm

Last I heard there is no permit required in the US.

I suppose you probably don't wanna volunteer that you're using it for medical purposes - I know I wouldn't, and if backed into a corner I might even tell 'em I'm gonna weld sumthin'. Cheesy

With any luck someone with personal experience getting O2 from a welding supply place will pipe in here.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Potter

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Re: why wont they listen
Reply #7 - Mar 16^th, 2010 at 7:31pm

bejeeber wrote on Mar 16^th, 2010 at 6:54pm:

Last I heard there is no permit required in the US.

I suppose you probably don't wanna volunteer that you're using it for medical purposes - I know I wouldn't, and if backed into a corner I might even tell 'em I'm gonna weld sumthin'. Cheesy

With any luck someone with personal experience getting O2 from a welding supply place will pipe in here.

Why would they even ask? Ya walk in plunk yer fifty down plus the fill up and leave.

Potter

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: why wont they listen Reply #8 - Mar 16^th, 2010 at 7:58pm You do NOT need a permit for welders 02. As in my post under this, tell them you are into hydroponics. Do not say you are using this for any condition. They probably won't ask anyway.
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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: why wont they listen Reply #9 - Mar 16^th, 2010 at 8:45pm Why won't they listen? The uneducated are ignornat and in your case useless!! Iddy
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pls1115

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Re: why wont they listen
Reply #10 - Mar 17^th, 2010 at 8:18am

thanks everyone im not going to my primary for this ever again. that was plan A. ok plan B my 2'nd floor builds boat trailers and can get o2 no problem he said last night he need to know exactly what i need. So I chatted with a fellow clusterhead from here thru e-mail and he sent me the picture and the type and the flow rate. Well to make it short everything I need. I wrote it down and tonight my friend who saw my in this cycle is going to get me it. I've ordered the non-rebreather mask and tubing thus far. I am a medical Assistant and yet cannot beleive the way these two offices are handled. I tried to speak with neuro yesterday again and change the meds plan and drop off the o2 papers and the secretary said she would have the dr. call me back I waited and no call. No problem changing docs. i'll go thru them like water. and the way to get my o2 will be our friend so I'm paying to lease it for the yr. not so bad and he said he'll fill it for me when it's empty. I'm going to take all your advice and use it. i have this far and feel like it has gotten me futher than ever. before this site my dr. did'nt even tell me i'd have this for life or that it was a disease. so when it came back this year i was scared, shocked, and needed those anwsers I desperatly searched for during my cycle. i'm still going to push dr.s for the o2 for this because it'll make me feel better inside knowing one more dr. beleived the o2 helped. That was another coment my primary said that there was no proof the o2 works. I then tried to show her post from here saying it does and nope got no where just teary eyed. left angry. Thank you. everyone you are my new family!!!!!!!!!!!

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Chad

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Re: why wont they listen
Reply #11 - Mar 17^th, 2010 at 8:27am

pls1115 wrote on Mar 17^th, 2010 at 8:18am:

That was another coment my primary said that there was no proof the o2 works. I then tried to show her post from here saying it does and nope got no where just teary eyed. left angry. Thank you. everyone you are my new family!!!!!!!!!!!

That primary Doc is a DOPE!!!! You can Google oxygen and clusters and tons of hits come up with proof about it working. Even news videos. If that Doc is that ignorant, it's time to run to a new one.

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« Last Edit: Mar 17^th, 2010 at 8:39am by Chad »

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: why wont they listen Reply #12 - Mar 17^th, 2010 at 9:29am because they are selfish,no caring more than money drug pushers and while a patient talks they are checking back mind their list of what they haven't bought yet. sorry what i meant is they are..ignorant
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Chad from mn CH.com Junior Offline I Love CH.com! Posts: 32 Minnesota Gender:	Re: why wont they listen Reply #13 - Mar 17^th, 2010 at 9:45am I would get a lawyer and sue their ass.This shit is nothing to mess around with!!!People have taken their lives due to overwhelming pain! I feel for ya.Been there done it
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pls1115

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Re: why wont they listen
Reply #14 - Mar 17^th, 2010 at 2:34pm

i agree with everyone of you. they dont care about our pain. my neuro saw me have an attack at his office and yet no o2. it is ignorance on thier part and if it was them suffering it would be a whole different story. its a sad story we live but we cant let it stop our war. we need to fight for our right and our survival thru the pain. we need to stay strong to fight them and the beast. without you i wouldnt be where i am now, nor would i know what i know now. a wise suffere told me knowledge is power and im educating myself to help my cycles. screw these dr.s till i get the one that works!!!!!!!!!!!!!!!!!!!!! thanks to all and wishing e1 pf d&n's paula

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Potter

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Re: why wont they listen
Reply #15 - Mar 17^th, 2010 at 2:34pm

pls1115 wrote on Mar 17^th, 2010 at 8:18am:

thanks everyone im not going to my primary for this ever again. that was plan A. ok plan B my 2'nd floor builds boat trailers and can get o2 no problem he said last night he need to know exactly what i need. So I chatted with a fellow clusterhead from here thru e-mail and he sent me the picture and the type and the flow rate. Well to make it short everything I need. I wrote it down and tonight my friend who saw my in this cycle is going to get me it. I've ordered the non-rebreather mask and tubing thus far. I am a medical Assistant and yet cannot beleive the way these two offices are handled. I tried to speak with neuro yesterday again and change the meds plan and drop off the o2 papers and the secretary said she would have the dr. call me back I waited and no call. No problem changing docs. i'll go thru them like water. and the way to get my o2 will be our friend so I'm paying to lease it for the yr. not so bad and he said he'll fill it for me when it's empty. I'm going to take all your advice and use it. i have this far and feel like it has gotten me futher than ever. before this site my dr. did'nt even tell me i'd have this for life or that it was a disease. so when it came back this year i was scared, shocked, and needed those anwsers I desperatly searched for during my cycle. i'm still going to push dr.s for the o2 for this because it'll make me feel better inside knowing one more dr. beleived the o2 helped. That was another coment my primary said that there was no proof the o2 works. I then tried to show her post from here saying it does and nope got no where just teary eyed. left angry. Thank you. everyone you are my new family!!!!!!!!!!!

It's a miracle.

Potter

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pls1115 CH.com Newbie Offline Posts: 15 new bedford massachusettes Gender:	Re: why wont they listen Reply #16 - Mar 17^th, 2010 at 2:36pm oh and by the way we right thru Hippa im going to read up on it ill keep you informed
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: why wont they listen Reply #17 - Mar 17^th, 2010 at 5:25pm Quote: we right thru Hippa Are you referring to the Health information privacy act???? Can you tell us what that has to do with your problem with getting 02 or a decent treatment plan? Not sure what you mean here.
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pls1115 CH.com Newbie Offline Posts: 15 new bedford massachusettes Gender:	Re: why wont they listen Reply #18 - Mar 17^th, 2010 at 6:00pm not sure yet havent read up on the whole rights of the patient stuff yet. but i know we have some.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: why wont they listen Reply #19 - Mar 17^th, 2010 at 6:03pm I am having a difficult time understanding most of what you're telling us.
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pls1115

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Re: why wont they listen
Reply #20 - Mar 17^th, 2010 at 9:00pm

my comp. is cutting my messages off. that was weird. sry. i have to read my books from medical law and ethics and find out my rights to get back at my dr.s here that i have now but in the mean time im going to try to obtain the o2 from a friend of our family and look for a new neuro while i wait to see the specialist. my plan b. maybe its the topamax idk. sry for the mix up paula

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Linda_Howell

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Re: why wont they listen
Reply #21 - Mar 17^th, 2010 at 9:37pm

Like I told you in a PM Topmax will do that to you Paula. Undecided

HIPPA rules really have nothing to do with getting 02. Of course you have rights as far as being a patient but...o.k..... I am at a loss for words here. Undecided

What you need is to find a Dr. who is knowledgable about this condition and go from there. There is so much info here and I realize it is sometimes daunting for newcomers. Just take it slowly and read around here, especially what I and others have said about 02.

Your state should have many Dr.s who fit the criteria of being knowdgeable. Here are some who have been recc. by folks here. Maybe you can look them up in the phone book and give them a call and ask pertinent questions such as..."have you ever treated a CH patient before" etc.

Quote:

L.Dana Dewitt
Newton

Peter Zuromskis
Lexington

Brian Lieberman
Norwood

Albert Ackil
Taunton

Dr Paul Blachman
Weymouth

Dr. Elizabeth Loder

Boston

Dr. James Morrel

Charleston

Dr Schoeck

Lawrence

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FramCire CH.com Alumnus Offline Life like a froward child must be humored a little Posts: 1710 Bolivar, MO USA Gender:	Re: why wont they listen Reply #22 - Mar 17^th, 2010 at 9:56pm Don't waste your time going after your doctor. All they will need is to reference where they got their info from and I am sure you will win nothing but a lawyers bill. You are in a state with a TON of Doctors. Find one that knows something or is willing to research and you are golden.
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dsw

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Re: why wont they listen
Reply #23 - Mar 27^th, 2010 at 10:33pm

Paula - you are so close yet so far away. Dump the GP.

We did that dance w/ incorrect diagnosis. Then my research helped me realize what my husband had was clusters. The place to go in MA is Faulkner Hospital in JP, "The John R. Graham Headache Center, based at the Faulkner Hospital, provides consultation services for patients with chronic, disabling headache conditions. The Center has particular expertise in migraine, tension-type and cluster headaches. Evaluation and treatment recommendations provided to referring clinicians emphasize the use of headache-specific treatments rather than general pain medications. Emphasis is placed on further prevention of headaches, for which non-pharmacological treatment or medications may be recommended."

Dr. E. Loder or Dr. P. Rizzoli are the ones to see. NOW IS THE TIME TO CALL. I called in March LY and was told they would call me in June to set up appointment for new patients. June 1st I called..."not setting up appointments yet." June 2nd I called and got an appointment for the following week! When my husband and I went for our first visit, the relief I felt when Dr. Rizzoli diagnosed CH was palpable. I couldn't help the tears from welling up. WE WERE HOME! It took my husband another 6 months to understand it was a disease that might not go away but that this doctor was in for the long hall. He literally told us he was on board w/ the fight and his goal was to knock this thing down so that our quality of life would be back to normal. Our next appointment is Monday. Hoping for the 02 since we are changing insurance plans and my insurance doesn't cover meds to the level as my husbands union plan did. Why changing plans you might ask? Because of my husband getting kicked in the butt by this damned recession and no work since June 09. Union Hall be damned too. That is a story for another day! Luck Paula, write if you need more info....and PFDAN.
diane

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