Went to my doctors about my diagnosis today....

[Deathscreton]

And requested he write me a script for a CPAP machine so I could self-titrate (I was already diagnosed with moderate OSA at 19.6 AHI. The interp page was already signed by a board certified sleep doctor). He told me no. PREVIOUSLY, he stated that I needed to go an ENT to discuss "minimally invasive surgical options". Keep that in mind for later.

Anyways, sitting in his office, ask him why he won't let me self-titrate. His response: "If you set the incorrect pressure on a APAP machine, it could cause a pneumothorax (a collapse of the lung due to air entering the chest cavity, there are different variants or reasons that could cause this) and you would die. It would kill you." I shit you not. Those were his words.

Couple things wrong with this people, and keep this in mind because this is educational.

1. Don't let ANYONE, especially a medical professional, threaten you with a statement like this. There are plenty of ways he could have gone about this to let me know of the adverse consequences of "self-titrating". This was not it, and all it did was piss me off immediately because

2. he lied. Do not let anyone tell you anything without first doing your research on all of your options. He expected me to let him do the heavy lifting, so when I came in properly armed with the knowledge, he lost footing. Please make sure you know your conditions, the things that might cause it, and the things they may cause. In this case, a pneumothorax being caused by air pressure exerted by any type of CPAP machine is bullshit (unless you have an underlying condition in which almost any type of exertion of the lungs could cause a collapse) and I wasn't biting.

The conversation went downhill from here. I remained respectful and let him stumble over his words, and when he offered a reason, I gave him an answer as to why, again, it was bullshit. To give you an idea, I'll share some snippets of what went on below:
-------

Doc: "Only certified specialists should change the settings."
Me: "There isn't anything against a patient changing their own settings in an xPAP machine, law or otherwise. There never has been." (What is illegal is a DME or doctor telling you how to use your device, or selling you a device without a prescription. In fact, changing your own settings in this sense is akin to how diabetics change their insulin dosages within reason. Their medication/therapy is what's keeping them alive, much to the same degree with SA patients.)

Doc: "You can't just do self-titration. That's like me saying "you have pneumonia", and me saying "well heres some antibiotics. There you go.""
Me: "I'm not sure what this has to do with CPAP and self-titration. Taking the wrong antibiotics would possibly kill me. Changing my pressure settings would just make me uncomfortable, or not solve my SA problems/cause CA problems which can be fixed the next time I see my therapy reports."

Doc: "It's like open heart surgery." (I'm not kidding, he xxxxx said that. I'm sighing at this point because it's obvious he doesn't know anything about this field. He even says "I'm not trained for this" later in our discussion.)
Me: "Well, not really, cause I'm not cutting open my own chest to change a few settings."

Doc: "It causes high blood pressure."
Me: "Really? It does?" (I was actually surprised because this seemed plausible despite all he's said earlier.)
Doc: "Yes. Forcing too much air into your lung can cause stress and stretch them excessively." (back to the lung thing)
Me: "So manufacturers are creating devices that could inadvertently pop a user's lungs based on their pressure setting? Is that what you mean?" (now this was just me being petty. There are tons of drugs, equipment and other objects that were meant for one thing, but abused, could be used for another purpose or even harm the user. This doesn't the case with CPAP machines. I've never seen a report or litigation purposing harmful lung side effects with the use of CPAP machines. Please feel free to show me some if you have any.)

Doc: "You are the first to ask me this in 34 years." "I'm the doctor." "If the judge in the malpractice asks me why I let the patient order me around, what do you think the jury would say"?
-----

Look, you probably get my point. I'm not trying to bash the doctor. In fact, I can understand his hesitation. He's being asked by someone he doesn't expect to know anything about the condition they're suffering from. He's been in the field a long time, and probably doesn't expect a patient to ask HIM to do anything. He's used to giving out information and not receiving it. And to be fair, he stated that if I could prove using medical journals from two sources, New England Medical Research and some other place I don't remember, that it was okay and safe for patients to self-titrate, that he would totally comply (personally, I don't feel like I can take him on his word for this, and if I can't trust my doctor, I don't want him medicating me), I just want people to know that you need to do research on your condition. Don't walk all over your doctor who is trying to help you (for one reason or another), but don't take things at face value either.

ANYWHO, tl;dr: I'm still without a CPAP machine, and am now currently looking for a new doctor. Also, HOORAY FOR FINALLY HAVING MY ACCOUNT FINALIZED.

EDIT: Spelling errors and grammatical fixes.

[chunkyfrog]

I would have asked the doc what sort of kickbacks he gets from the lab and the DME.

[Goofproof]

I would have asked the doc what sort of kickbacks he gets from the lab and the DME.

I'd rather know how much and to who he paid for his license. Jim

[Pugsy]

Check this out.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?

It's old and there's probably something similar newer but I haven't had the need to look.

[Deathscreton]

I would have asked the doc what sort of kickbacks he gets from the lab and the DME.

That's the best part. I left out a complete chunk regarding his "opinion" of the Lab and other specialists.

Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."
Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."
Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."
Me: "Doctor, do you know what a manual titration is and what they do during it?"
Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.)
Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."
Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."
Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)

It goes on like this for awhile. He goes from wnating to send me to an ENT to wanting to suggesting surgery to suggesting oral appliances before finally giving up and us both agreeing we weren't going to come to an agreement. So I asked for a copy of my interp page and left.

Check this out.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?

It's old and there's probably something similar newer but I haven't had the need to look.

I actually read that yesterday! If no one else has, it's super interesting. I'll post anything else I might find regarding this.

[Mogy]

Hi Deathscreton,
Have you thought about skipping the doctor/prescription route and just go buy a machine? I'll bet that if you ask your 10 closest family/friends someone will know of a machine you can use for cheap. Or find one on Craigslist. There is a data capable APAP in my city right now for $150.

[Deathscreton]

Hi Deathscreton,
Have you thought about skipping the doctor/prescription route and just go buy a machine? I'll bet that if you ask your 10 closest family/friends someone will know of a machine you can use for cheap. Or find one on Craigslist. There is a data capable APAP in my city right now for $150.

I have. As odd as this may sound with what I've just posted, I would LIKE the backing of a certified physician when it comes to having this device for a multitude of reasons.
That and money is hard to come by. I've got insurance, I'd like to use it if possible. At this point, the doctors have been much more trouble than the actual insurance company has.

[Pugsy]

this can work well if you have an auto bipap
unless you have problems with CA

but if you use a dumb cpap it might not

It's easier and faster with an apap to find a suitable pressure or range but it can be done with fixed cpap in the same way...just takes longer and a bit more work.
Does need to be a full data machine first and paramount.
If all a person has available is a full data cpap only...self titration can be done. A bit more work but far from impossible.

[Janknitz]

Isn't it scary when you know more than your doctor and know when he is blowing smoke?

If he's that ignorant about sleep apnea, how can you trust him for other things??? He could have at least been honest with you and said that he doesn't know much about sleep apnea and that's why he'd prefer you to be followed by a specialist so that he can be assured you're in good hands. Instead he was just making shit up. And he clearly didn't like the fact that you are taking an active role in your own care.

Good riddance to bad rubbish. Hope you find a great, collaborative and HONEST doctor to replace him.

[Deathscreton]

=================

and ASVs self titrate themselves
at higher pressures than a cpap
warnings against use in certain heart situations but not pneumothorax issues !

dont ask for a cpap rx
demand at least an apap
better yet a bipap
that can be set to dumb cpap or apap type operation too

there are some obsolete doctors out there
get one who is up to date

Anything other than a CPAP or F-BPAP will titrate itself. At this point, self-titration can be done without intervention from a medical employee. I honestly feel like they're just doing it for money because people don't know it's an option. As said before, you can self-titrate with anything, CPAP included, just takes longer. But yeah, I most definitely will be looking for another doctor.

Check this out.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?

It's old and there's probably something similar newer but I haven't had the need to look.

this can work well if you have an auto bipap
unless you have problems with CA

but if you use a dumb cpap it might not

most people could self titrate with an apap type without needing any lab studies
but not all

I think it has a lot to do with comfort level as well. Some people may not be confident in their skills to do self-titration. That doesn't' mean it should be ignored for those who are capable of doing so.

Isn't it scary when you know more than your doctor and know when he is blowing smoke?

If he's that ignorant about sleep apnea, how can you trust him for other things??? He could have at least been honest with you and said that he doesn't know much about sleep apnea and that's why he'd prefer you to be followed by a specialist so that he can be assured you're in good hands. Instead he was just making shit up. And he clearly didn't like the fact that you are taking an active role in your own care.

Good riddance to bad rubbish. Hope you find a great, collaborative and HONEST doctor to replace him.

That's the part that really infuriated me. Instead of admitting that he didn't know much about it, he lied, and continued to do so, then pulled the "I'm the doctor" card. I don't expect you to know everything, especially if you're a general practitioner. But to lie to my face about it? AND use scare tactics? Fuck off.

And I hope I find a good doc too. I've had some people recommended to me, so I'll be doing some shopping when I have the ability to. I've dealt with my sleep apnea for around 7 years. While another week or so won't kill me, it would have been nice to have some results by now.

[Lucyhere]

As has been said a zillion times, most doctors don't have a clue or they are in it for the money. Some even own their own sleep labs/DMEs and don't tell you. When I told my doctor there was no way I was going back for a titration she said no problem and had the DME set the machine to what she thought it should be. It turned out to be just fine and I've tweaked it a little myself since that time. I don't see her often anymore but I thank her when I do for being so knowledgeable... and decent. If you read a bit here you'll see that if you have a data capable machine the members will gladly help you find the correct pressure(s). Many have done that without the need to be titrated. A data capable machine and sleepyhead will be the key to your success.

[nicholasjh1]

I would have asked the doc what sort of kickbacks he gets from the lab and the DME.

That's the best part. I left out a complete chunk regarding his "opinion" of the Lab and other specialists.

Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."
Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."
Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."
Me: "Doctor, do you know what a manual titration is and what they do during it?"
Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.)
Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."
Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."
Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)

It goes on like this for awhile. He goes from wnating to send me to an ENT to wanting to suggesting surgery to suggesting oral appliances before finally giving up and us both agreeing we weren't going to come to an agreement. So I asked for a copy of my interp page and left.

Check this out.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?

It's old and there's probably something similar newer but I haven't had the need to look.

I actually read that yesterday! If no one else has, it's super interesting. I'll post anything else I might find regarding this.

Honestly I think you could sue him for not giving a scrip and thus jeopardizing your life. my insurance company was heming and hawing about approving me getting the machine, because I didn't have a "sleepiness interview" even though the study should 100% certainty that I had severe apnea... Long story short, after I threatened a class action law suit they approved the next day.

And Relating to your study, I got a home sleep study done where they have 0 ability to "manually adjust" so they just gave me a 6-16 scrip. I just adjust it on my own using the clinical back door.

[Deathscreton]

As has been said a zillion times, most doctors don't have a clue or they are in it for the money. Some even own their own sleep labs/DMEs and don't tell you. When I told my doctor there was no way I was going back for a titration she said no problem and had the DME set the machine to what she thought it should be. It turned out to be just fine and I've tweaked it a little myself since that time. I don't see her often anymore but I thank her when I do for being so knowledgeable... and decent. If you read a bit here you'll see that if you have a data capable machine the members will gladly help you find the correct pressure(s). Many have done that without the need to be titrated. A data capable machine and sleepyhead will be the key to your success.

It's unfortunate that medicine seems to be plagued by stubborness. That's one of the few fields I would think that such attitudes would NOT be allowed. It's insane it happens so often.

I would have asked the doc what sort of kickbacks he gets from the lab and the DME.

That's the best part. I left out a complete chunk regarding his "opinion" of the Lab and other specialists.

Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."
Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."
Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."
Me: "Doctor, do you know what a manual titration is and what they do during it?"
Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.)
Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."
Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."
Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)

It goes on like this for awhile. He goes from wnating to send me to an ENT to wanting to suggesting surgery to suggesting oral appliances before finally giving up and us both agreeing we weren't going to come to an agreement. So I asked for a copy of my interp page and left.

Check this out.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?

It's old and there's probably something similar newer but I haven't had the need to look.

I actually read that yesterday! If no one else has, it's super interesting. I'll post anything else I might find regarding this.

Honestly I think you could sue him for not giving a scrip and thus jeopardizing your life. my insurance company was heming and hawing about approving me getting the machine, because I didn't have a "sleepiness interview" even though the study should 100% certainty that I had severe apnea... Long story short, after I threatened a class action law suit they approved the next day.

And Relating to your study, I got a home sleep study done where they have 0 ability to "manually adjust" so they just gave me a 6-16 scrip. I just adjust it on my own using the clinical back door.

I don't know if I could win a court case considering that's what he was attempting to avoid in the first place, especially since I don't have any evidence of the conversation. It's unfortunate, but I have to swallow it and just move on I believe. I'm just happy I had the resources (this board and others) that allowed me the knowledge so I didn't get sucked into endless loops and bullshit int he process. I'm happy for that at least.

[mw757]

It's unfortunate that medicine seems to be plagued by stubborness. That's one of the few fields I would think that such attitudes would NOT be allowed. It's insane it happens so often.

It’s worth remembering that in every graduating class, someone has to have the worst grades.

[nicholasjh1]

As has been said a zillion times, most doctors don't have a clue or they are in it for the money. Some even own their own sleep labs/DMEs and don't tell you. When I told my doctor there was no way I was going back for a titration she said no problem and had the DME set the machine to what she thought it should be. It turned out to be just fine and I've tweaked it a little myself since that time. I don't see her often anymore but I thank her when I do for being so knowledgeable... and decent. If you read a bit here you'll see that if you have a data capable machine the members will gladly help you find the correct pressure(s). Many have done that without the need to be titrated. A data capable machine and sleepyhead will be the key to your success.

It's unfortunate that medicine seems to be plagued by stubborness. That's one of the few fields I would think that such attitudes would NOT be allowed. It's insane it happens so often.

I would have asked the doc what sort of kickbacks he gets from the lab and the DME.

That's the best part. I left out a complete chunk regarding his "opinion" of the Lab and other specialists.

Doc: "They want you to go back for another sleep study. I honestly don't know why they didn't do a split night. I always order split studies."
Me: "The manual titration isn't necessary. I can do that at home which is why I'm asking for the script."
Doc: "Well obviously they require more information. They wouldnt' have asked if it wasn't necessary."
Me: "Doctor, do you know what a manual titration is and what they do during it?"
Doc: "I, well, uh, no. I don't know." (I swear to god I'm telling the truth. I wish I had recorded our conversation.)
Me: "One diagnoses, the other finds the pressure needed to treat. That's all. I'm already diagnosed. It says so on the interp page. Literally."
Doc: "Obviously not. If they want you to go in again, they must be missing the information for a proper diagnosis."
Me: "So even if I do this second study, you're still going to send me to an ENT?"
Doc: "No, once they give me the information I need, I'll give you a script." (What's the difference? A board certified sleep specialist signed off on my interpretation page, literally diagnosing me with OSA. You literally have ALL you need right there on that paper.)

It goes on like this for awhile. He goes from wnating to send me to an ENT to wanting to suggesting surgery to suggesting oral appliances before finally giving up and us both agreeing we weren't going to come to an agreement. So I asked for a copy of my interp page and left.

Check this out.
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?

It's old and there's probably something similar newer but I haven't had the need to look.

I actually read that yesterday! If no one else has, it's super interesting. I'll post anything else I might find regarding this.

Honestly I think you could sue him for not giving a scrip and thus jeopardizing your life. my insurance company was heming and hawing about approving me getting the machine, because I didn't have a "sleepiness interview" even though the study should 100% certainty that I had severe apnea... Long story short, after I threatened a class action law suit they approved the next day.

And Relating to your study, I got a home sleep study done where they have 0 ability to "manually adjust" so they just gave me a 6-16 scrip. I just adjust it on my own using the clinical back door.

I don't know if I could win a court case considering that's what he was attempting to avoid in the first place, especially since I don't have any evidence of the conversation. It's unfortunate, but I have to swallow it and just move on I believe. I'm just happy I had the resources (this board and others) that allowed me the knowledge so I didn't get sucked into endless loops and bullshit int he process. I'm happy for that at least.

'

Sorry, I didn't mean to imply you should actually sue you're doctor, but if you're not getting movement, to me it's worth threatening, since the quality of life is so much higher on CPAP. (at least for me)