Newbie looking for perspective

[JohnK]

After much prodding from my wife I finally went for a sleep study and was diagnosed w/ OSA. I had been putting it off mainly because I wasn’t really noticing any of the severe symptoms that many people report. The sleep study recorded 68 apenas during the first hour of the night so they went ahead and titrated me at 16.

Since then I have been lurking on these forums and trying to read as much as I can. This forum is amazing!!! Everyone here seems so supportive, so before I ask my questions I want to start by saying thanks for all the help you have already given me.

I saw my sleep doctor last week and picked up my Remstar M series Plus w/ a ComfortSelect mask on Tuesday. For starters I found that mask to be completely unbearable. I only lasted 2 hours w/ it the first night. I’ve since ordered and received an Aura Twilight (or whatever its name is now) and find that mask to be 18million times more comfortable.

Here is my problem tho – when I am wearing the mask at my pressure I can only exhale a little bit, leading to really shallow breaths. I do have the CFLEX set to 3. Even when I am sitting up awake using the mask I get lightheaded and dizzy. I am able to fall asleep by hitting the ramp button, but when the pressure gets up high I feel like I can’t breathe. I’ve caught myself at the edge of sleep where I’m not even trying to take a breath which freaks me out even more. Even more bothersome is that after wearing my mask for 4 hours last night (and hardly sleeping at all) I feel like I am having trouble breathing comfortably today at work.

I know there is clearly going to be an adjustment phase I need to go through. My sleep doctor said I should come back to see him in 2 months. So my question is how long should I keep trying to suffer through before doing something about it? Since I was titrated on my back but sleep on my side/stomach I am wondering if I would need less pressure in that position (leading me to think about an APAP, but I doubt the doc will prescribe that for me). Should I try to see the doc again after 2 weeks? A month? Or just wait 2 months? I feel so much worse than I did before I started down this path

Also – is it normal for nighttime CPAP use to effect your day time breathing?

Anyway, thanks again for all the info I’ve already learned here!

[Snoredog]

I wouldn't wait 2 months, I'd wait about a week, call your doctor back and tell them you are having difficulty tolerating the 16cm pressure and cannot use the machine. The doctor should then switch you to a bi-pap machine that offers you more exhale relief.

They gave you the cheapest machine and mask in inventory. They charge your insurance like you were getting the Cadillac, this increases their profit.

Based upon your pressure, you should really be on a Bi-pap machine that offers you more exhale relief, better yet a Bi-pap Auto with BiFlex.

Note: Try the different Cflex settings on your Plus, if Cflex is set too high for you it will seem like you are hyperventilating.

My opinion is when you get over 15cm pressure you are in Bipap country, not cpap.

[stages3n4]

I was prescribe a Bi-pap for just the reason you are stating. In study the tech noted I was struggling to exhale appropriately at the constant rate, Dr. Rx'd a bi-pap at inhale of 12 and exhale of 8.

As I have read, and am finding out for myself, you have to be your own advocate in your treatment. I think this is caused by two things, the insurance factor (the less your equipment cost, the dollars remain for them) and frankly, a severe lack of knowledge on the part of the DMEs.

I don't fault them too much, unless you've be on an xpap, you really have no idea. They should have at least a base level of knowledge though. Not to make myself out to know much about this, but, after two weeks on therapy and visiting this site and other reading, I'm sure I know more about this than the dipstick I have been dealing with at the DME. with how little I truly know, that is scary!

[JohnK]

Thanks SnoreDogg, what you are saying makes sense. I had asked the doc about a bi-pap during my initial consultation but he dismissed it as an expensive "special case" device. While I did do ok w/ the pressure during my sleep test, I was on Ambien so I could have been in the jetwash of a 747 and not noticed it.

I'll call him next week and see what I can get. I suppose I can always purchase one myself if need be. There goes the tax refund!

Thanks again!

[tangents]

JohnK,

Did they use a Bi-PAP during your titration study? If you don't know, then you need to get a copy of you study data and find out. I was told also that higher pressures like yours needed a Bi-PAP. I agree that you should not wait another day before being the "Squeeky Wheel". Snoredog is right, they get the same money for a good machine as they do a bad one. You might want to call your insurance and halt the claim, until you get the BiPAP, too.

My opinion is that you need to find another doctor. If the prescription is written for a Bi-PAP, then your insurance might pay for it, since it's a different billing code than a CPAP.

Good luck to you. Let us know how you make out.
Cathy

[Linda3032]

Snoredog is right, you are in a Bi-Pap zone. Why should you have to suffer with cpap when there are more comfortable machines out there.

Buy out of pocket. .. Why? That's why you have insurance.

Here is a link with suggestions on getting an Auto instead of cpap. Many of them can be used to try to get a Bi-Level also. Start pushing for a decent machine now -- you will be using it the rest of your life.

viewtopic.php?p=98351&highlight=apap+doctor#98351

If it were me, I would push for a Bi-pap Auto with BiFlex. Like the Dawg wrote.

[Snoredog]

Thanks SnoreDogg, what you are saying makes sense. I had asked the doc about a bi-pap during my initial consultation but he dismissed it as an expensive "special case" device. While I did do ok w/ the pressure during my sleep test, I was on Ambien so I could have been in the jetwash of a 747 and not noticed it.

I'll call him next week and see what I can get. I suppose I can always purchase one myself if need be. There goes the tax refund!

Thanks again!

I wouldn't, I call the doctor and them them you are not compliant because you cannot tolerate the high pressure. What are they going to do? If your doctor wants you to be compliant and use the machine, they will have no problem writing a script for a bipap. You are better able to tolerate the pressure so you use the machine more.

Next, by attempting to use CPAP now, you have fulfilled the insurance requirement for "cpap" as required by most insurance. Check your policy, it probably says "bilevel" or "bipap" is covered if patient fails on cpap. Make yourself fail if you catch my drift

I let insurance buy the expensive stuff, you buy the cheap stuff.

[gasp]

John, like you, I'm a newbie to all of this and have already found cpap talk invaluable! I'm so glad I found it - and therefore, all of you. Thanks also in advance for all your help.

I've scoured the internet and spent a lot of time with my equipment/device provider looking for the equipment I want. Key words "I want." The doctor prescribes certainly, but the equipment provider can work with me to get the device I want in line with the prescription.

I was diagnosed with severe OSA (53 per hour) which is less than you, but still think a bi-pap is the way to go. Especially since I'm hoping the Fisher & Paykel The Oracle™ 452 Oral Mask will work for me.

After I have thoroughly researched equipment, I will spend the pricey copay to have the titration done (with the mask of my choosing). I may have to pay up front - that's still being decided - and then get reimbursed by my insurance. Well worth it I'd say : )

Best wishes to you and I look forward to our journey toward compliance.

[gasp]

Snoredog, you said "They gave you the cheapest machine and mask in inventory." I think this is the machine I found was the best and now questions my sanity. Which do you consider the best?

Thanks

[Snoredog]

Snoredog, you said "They gave you the cheapest machine and mask in inventory." I think this is the machine I found was the best and now questions my sanity. Which do you consider the best?

Thanks

not questioning any sanity, it is the way it works with insurance. Insurance will pay them the same for a plain jane machine as an auto, they have the same medical billcode. They probably charged insurance $1700 for that machine when it is all said and done. Insurance probably paid them $1250 for it. Even at $1250, go by cpap.com and see how much your can buy that machine for.

If you needed a more expensive machine like a Pro or Auto, like if you wanted to see your results and if therapy was actually working, or your pressure has changed, they could have given you one of those at no additional cost. The point is you are given the cheapest machine for maximum profit. You are now stuck with a plain jane featureless machine for 5 years until insurance will buy you another one. Since it doesn't give you any data, you have to go back for PSG's or experiment blindly finding your pressure.

I always like the argument: well my out of pocket expense was only $850 (for a sub $300 machine), shop around, you can get a autopap with humidifier for as low as $549.

[Guest]

Thanks for all the responses! The good news is that my insurance company (Anthem) requires the machine to be leased for 90 days before they purchase it, so hopefully trading it out won't be too painful. I also reviewed Anthem's policies regarding Bi-Pap and found:

Bilevel Positive Airway Pressure (BiPAP) is considered medically necessary when used by patients diagnosed
with obstructive sleep apnea or upper airway resistance syndrome (UARS) when CPAP has failed.

and:

Failed CPAP is defined as any of the following criteria documented in the medical record:
• Claustrophobia; or
• Inability to breathe through the nose; or
• Pain or discomfort; or
• Patient intolerance; or
• Patients at high pressures of CPAP (>10 cm H20) complaining of pressure discomfort.

I definitely hit at least 3 of those. I am going to call my doctor on Monday and see if I can convince him of that and write me a specific Rx for the exact machine. I am *very* happy to know that the problems I am having are outside the norm of usual xPAP therapy.

I'm still going to try using the machine this weekend and keep a diary of my experiences to help convince the doctor that my problems are real. I'm also thinking about printing out the insurance company's guidelines to bring with me, but I'm concerned that will make it appear that I am tailoring my complaints to the guidelines instead of being genuine. Any thoughts on that?

Thanks again everyone! I'll let you know how it goes.

[JohnK]

Bah, that last post was from me, forgot to login!

[Wulfman]

Since I was titrated on my back but sleep on my side/stomach I am wondering if I would need less pressure in that position (leading me to think about an APAP,.......

John,

I had the same thought as I was reading your post. Even though I did my titration study in my normal sleeping positions (side-sleeper), I was titrated at 16, but my doctor thought I REALLY needed a pressure of 18, so that's what he wrote my prescription for. I purchased the REMstar Pro 2 (straight CPAP) and the Encore Pro software and found out that a pressure of 10 produced an AHI of less than 1.0. What I'm saying is that you may not really need a pressure of 16. If you can get a machine (either CPAP or APAP) that records the nightly statistics....and the software, you can also find your true pressure.
You could also try a somewhat lower pressure as you get used to this new way of sleeping. Some pressure is better than none or too much (if it causes you to be non-compliant).

Best wishes,

Den

[JohnK]

One question I still have - is it normal to feel an effect on your breathing during the day after using CPAP at night? It is kind of like a pressure on my chest, or like I am a little out of breath. It is very mild, but definitely not "normal" I noticed it a little bit during the day yesterday, and even more so today. I used my chest muscles to "force" a deep exhale numerous times at night while I was awake, maybe I'm just experiencing soreness in those muscles from unusual activity.

[Wulfman]

John,

I've seen quite a few people mention that as they start out in this therapy.
It's all the more logical at the pressure you've been prescribed.
Also, if the mask isn't working, try getting a different one. Usually the masks that have the word "Comfort" in them.....aren't.

Den