Not upsetting my doctor

[Elsh]

I am not sure how to not upset my doctor, as he did tell me to stay on a pressure of 4 when I last spoke with him. I have since changed to a pressure of 5, and last night when I was congested (despite having used Flonase), I changed my pressure to 6...

I spoke with a healthcare professional today who I really respect and who I regularly see, and told her about adjusting my own pressure. She was very upset with me.

This prompted me to call my doctor's office and have them leave a message for my doctor to call me back. I am going to tell my doctor that I have been doing a lot of reading on Sleep Apnea (not going to say I am following advice of people online, because that will sound worse to a doctor) and that I read that people almost always start at the pressure they had in their sleep study. I am going to tell him that I am having trouble feeling like there's enough pressure to breathe on a pressure of 4, and that I'm wondering why I'm not on the pressure I had in the sleep study. I am not going to tell him I've increased it on my own. I'm too scared to do that. However, I am afraid he's going to insist that I stay on 4 for now, and then I will feel like I have to adjust back down to 4 until I see the new sleep specialist on the 18th and see what he has to say. It would be almost intolerable to have to change back down to 4, if not intolerable.

I just feel like I've made a mess of things, but so many people here recommended that I change my pressure, because I was really struggling with 4.

If anyone has experience with similar situations that they could tell me about, or offer any advice, I'd really appreciate it.


Edited to add: I spoke with the PA at my doctor's office, and she said the DME controls my pressure, and the doctor just signs off on it, so that I need to call them to ask about adjusting my pressure. Does that seem really odd? It did to me.

Second edit: My DME, of course, tells me they aren't in charge of that... that my doctor determines my pressure. It seems like my doctor does not want to take responsibility for my pressure. Is it safe to just stay at 6 (even though I was prescribed for 4) until I see the sleep specialist on the 18th?

[BleepingBeauty]

Some people freak out at the thought of an xPAP user changing their own pressure. But there are some really incurious sleep docs out there, and if we listened to them without questioning anything, many of us would never enjoy effective therapy.

If I were in your shoes, I'd tell the doc that either I up the pressure a bit so I can breathe comfortably with the machine, or I can't use the machine at all, that I feel like I'm suffocating at 4cms. If he still insists you keep it at 4, he's a lousy doc, IMO.

Do you know what your sleep study recommended for a pressure setting?

[Elsh]

Some people freak out at the thought of an xPAP user changing their own pressure. But there are some really incurious sleep docs out there, and if we listened to them without questioning anything, many of us would never enjoy effective therapy.

If I were in your shoes, I'd tell the doc that either I up the pressure a bit so I can breathe comfortably with the machine, or I can't use the machine at all, that I feel like I'm suffocating at 4cms. If he still insists you keep it at 4, he's a lousy doc, IMO.

Do you know what your sleep study recommended for a pressure setting?

Thanks for the advice. In the sleep study, they had me on 6, then 7.

[ameriken]

I don't know enough about changing settings, etc because I am new to this, but your goal is to get better and achieve a better state of health and happiness, it is not to make your doctor happy.

I am reminded of people who are terminally ill and have, at most, weeks to live. They are suffering in severe pain and their doctors don't want to increase their pain meds because they are afraid the meds might kill them or they might get addicted. So, those people end up spends their last days suffereing in pain instead of trying to get their doctors to listen.

Your doctor, just like your machine, is a tool and an asset toward that goal of better health and feeling better. Are you feeling better at the higher setting? Is it working for you? If yes, and if the higher setting is not causing any harm to you, then that is more important than whether or not your doctor is happy or upset. It is ok to be strong with your doctor, they are fallible and can make mistakes with your life, so you are ulimately in charge of your health. That doesn't mean to go out and do whatever the heck you want, it just means that you are the final say in your treatment and have every right to be firm and strong with your doctor, whether he/she likes it or not.

And if you don't like your doctor, fire him/her and find another that is more willing to work with you.

[HoseCrusher]

I would simply recommend that you tell your doctor that at the pressure he recommended your symptoms got worse, but when you increased the pressure to what was recommended from the sleep study, you started feeling better.

Then ask your doctor to explain the danger associated with using the machine at the pressure recommended by the sleep lab.

The idea is for you to eliminate all your symptoms and wake up each morning feeling totally rested. Your doctor is there to help guide you through all of this.

Another idea is to bring your machine to your next doctor visit. Set the machine at 4 and invite your doctor to see how "easy" it is to breath at that pressure. You don't need a mask, just shove the end of the hose in his mouth and plug his nose...

OK, ignore that last comment...

A better approach would to inquire if your doctor uses xPAP therapy. If not, you may have to educate your doctor about the symptoms involved with low pressure use. In a perfect world, you would have brought the machine home, used it at 4 that night, woke up in the morning feeling like crap, called your doctor and had the pressure revised immediately. Unfortunately, it is not a perfect world.

It sounds like your doctor is not familiar with what xPAP titration is all about. It sounds like he wants to start you low, then over time gradually work the pressure up to recommended pressure. Although this is a cautious approach, you will suffer dearly during the work up period. There are no side effects from using a pressure that keeps your airway open. There are lots of side effects from suffering through obstructive apneas while you sleep.

If your doctor is reluctant to work with you, you can either find another doctor, or simply figure it out on your own.

[Slartybartfast]

Thanks for the advice. In the sleep study, they had me on 6, then 7.

How 'bout getting the software for your machine and recording a night's data, then up the pressure to 6 and record another night. Compare the two. If you feel better and your AHI has decreased, record several nights at the new pressure and show it to the Doc. He/she won't argue with the data. My own doc was at first visibly uncomfortable that I had gone commando on him, but after I showed him my data and that I understood what it meant, his attitude reversed.

I agree, a setting of 4 doesn't provide a normal person enough air to breathe without effort. The minimum I need, even when reading a book, is 6, and not because I need my airway held open, 6 is necessary to supply me with enough volume of air to breathe comfortably.

[HerbyPeg]

The physician you are trying to not upset works for you.

[Slinky]

As I understand it the sleep doctor you are seeing on the 18th is NOT the doctor who is telling you to stay at 4 cms of pressure???

If that is the case, what's the problem? IF the sleep doctor even notices or asks what pressure you are at, just tell him you were orginally set at 4 cms but couldn't breathe sufficiently and your pressure was upped to 6 or 7 or wherever you have it set when you see him/her. No need to say WHO upped the pressure. You can gradually "feel" your way w/how much info you volunteer to him/her regarding who is making any pressure settings on your PAP. No lies, maybe "sins of omission" may be necessary at first.

[Breathe Jimbo]

If you cannot breathe comfortably and use the machine at 4, then your pressure must be increased, at least to the minimum that allows you to breathe and use the machine. From what you have said, it appears that you were titrated to 6 or 7. Unless you have a special medical condition for which CPAP is contraindicated (in which case you probably should not be using CPAP for the time being), it is inconceivable that 6 would be a problem. If it were me, I would tell the sleep doc that I could not breath at 4, so I increased the pressure to 6, at which I can breathe. "The whole idea is to make it easier for me to breathe, not to make me feel like I'm suffocating, right?" This is a no-brainer. Any sleep doctor who has a problem with this is a moron and should be fired. Your general doctor is probably just afraid of what he does not understand; that is no reason for you to suffer, IMHO.

[Janknitz]

First, changing your pressure IS NOT DANGEROUS unless you have a serious lung condition (i.e. severe emphysema). So if you're scared that you're going to cause yourself some harm, don't worry, you won't. The worst that can happen is that you might have "pressure induced centrals", but not for the small changes you are considering. It' helps to have software and track your data so you can see the effect of any changes, but you will not hurt yourself by experimenting.

But I get the sense this is more about the fact that you are a goody two shoes people-pleasing person than it is about YOU, YOUR COMFORT, YOUR OPTIMAL TREATMENT. You want to be a "good girl" for the male doctor. You don't want to make him upset or angry with you. I understand totally, it's ingrained in you (me too, but I'm working on it!). It's not a flaw and you don't have to feel bad about it, EXCEPT when it interferes with getting the proper medical treatment. This IS interfering with your needs, big time.

So time to put on the big girl panties and stop worrying about what the doctor thinks. This is about YOU and YOUR needs. Your needs are NOT being met at an inadequate pressure, and it's putting you at risk of giving up on treatment you desparately need. The doctor is doing you no good, but you still want him to like you?????

Get the software, educate yourself about how to understand the printouts, and take charge of your care. When it comes time to see that doctor, go armed with the printouts that show your changes are good for you, and if he gives you a hard time DUMP him and find a better doctor who will work collaboratively with you. You don't have to be a "good girl" any more.

PS, there are NO CPAP Police, either!

[BleepingBeauty]

Edited to add: I spoke with the PA at my doctor's office, and she said the DME controls my pressure, and the doctor just signs off on it, so that I need to call them to ask about adjusting my pressure. Does that seem really odd? It did to me.

Second edit: My DME, of course, tells me they aren't in charge of that... that my doctor determines my pressure. It seems like my doctor does not want to take responsibility for my pressure. Is it safe to just stay at 6 (even though I was prescribed for 4) until I see the sleep specialist on the 18th?

I think here's what they're trying to tell you: The DME "controls" (i.e., makes changes to) your pressure, but the doctor has to order (i.e., sign off on) any changes to your therapy. The DME can't make changes without a doctor's order.

Yes, as has been advised already, barring any other respiratory problems, it's perfectly safe to use your machine at 6cms.

[BrianinTN]

A couple points here that may be helpful.

First, it's worth noting that a pressure of 4 can indeed be both comfortable and therapeutic for some people. My ASV has a minimum pressure setting of 4, and when I'm using a full face mask, it's perfectly comfortable to me.

Second, Eish, I noticed that you are using a Swift FX (nasal pillow) mask. I have a hard time breathing too when I'm using that minimum pressure and my Swift LT. Some of the problem may very well be that combination. I have an ASV unit, so I'm able to increase my minimum inhalation pressure while keeping my minimum exhalation pressure at 4. You unfortunately don't have that option.

Third, you said that they took you up to a pressure of 7 in your sleep study. Do you have the numbers for your AHI for the pressures of 4, 5, 6, and 7? They probably would appear in something that looks like a table. Those numbers can help determine how therapeutic the various pressures were for you. They don't tell the whole story, but it's a decent start.

Fourth, and most important, this sounds like a classic case of miscommunication. I've had this happen to me as well. Things tend to get lost in translation in the loop between the sleep lab, your doctor, and your DME. I've had a machine set up completely improperly because someone forgot to relay some important settings information. Assuming your sleep lab titration resulted in your best settings at a pressure of 7 (and that is just an assumption until we see the numbers), it isn't out of the realm of possibility that this whole thing is a giant misunderstanding.