Introducing myself (long)

[Catnapper]

Hi,
It seems only polite to let you know who I am and why I have been lurking around, absorbing your ideas and experience like a sponge. You have been so comforting to me in my struggles with OSA therapy. Thanks to all of you who have been willing to share your wit and wisdom with people like me who so desperately need help. I hope someday to help someone else as a payback.

My CPAP experience started July 31st with a sleep study, and with machine and mask at home on August 4, so you see I am pretty much a novice. My RT at the DME told me not to read the support forums as those people are not professionals. That sent me straight to you, as her other advice had been pretty worthless. For example, I bought 2 masks, a Mirage full face mask and a Swift nasal pillows. She said she had never had someone who bought 2 masks, and her advice to me was that I should just use one mask and get used to it! She had no help for me for my monumental headaches, irritated eyes, waking every hour or so to adjust for leaks and changing positions, etc. When I asked about c-flex she told me that it was noisy and everyone who had it brought it back. By now you can guess what machine she furnished me and told me it was the best out there. It was the ResMed Escape, straight CPAP at 15 cm with heated humidifier.

My summary letter said I have severe OSA, hypoxemia (low O2 saturation 71%), and PLMD. I arranged to have my follow-up appointment September 22, after 7 weeks of therapy. The doctor was willing to explain the study and listen to my problems. He had the DME lend me an Auto-PAP for a month or so to find out more about my pressure needs. I now have a copy of my prescription and the entire study, not just the summary letter.
Besides the masks mentioned above, I have an Activa (2 different sizes of cushions), an F&P 406, and the Hybrid. Someone gave me a Comfort Curve, but I haven’t tried it yet. I am still having mask problems. I use the Activa most often, but switch during the night to find something that works if I am having a difficult time. I wake up easily still, and usually about every hour for a few minutes and sometimes more – even hours.

The borrowed Auto-PAP (ResMed Vantage) is much more comfortable to use than the straight CPAP. I have had much lower pressures, averaging 11.5 for the 95%-ile, and the AHI averages under 3. I will see the doctor again in November to get his verdict on pressure and which machine he thinks I need.

I prefer to take charge of my health and will want to monitor my progress with the therapy. I will wait to see what the doctor recommends, but I intend to change machines at that time. The Escape machine is going back for sure. I have no idea if the DME will give me a problem with this. I am comfortable dealing with software and data collection because of my work, so I see no huge challenge or reason not to have the tools to do some of the monitoring myself if I want to do so. What little information I have gathered so far is helping me to see what works best. My insurance requires 10 months of rental. Do you think that is to ensure I will have to pay the deductible for 2 years? Hmmm.

I wish I had known about this group before I started therapy, as I believe many of my problems would have been lessened. I am so grateful to have your help. I am committed to making this work for me. So far, I am seeing some improvement, but I still crash in the late afternoon. I believe I have had apnea for more than 20 years which worsened over time to my present state.

Thanks again.

Catnapper

[Snoredog]

welcome aboard. it takes 4-6 weeks to really get used to wearing the mask where you can sleep, so it takes a lot of patience until then.

it is good you have a copy of your PSG, you should save it and refer back to it, I would keep it in a binder or folder. If you have another PSG you can compare the two.

Check your PSG for any notation of CA (Central Apnea) or MA (mixed apnea) in addition to snoring. If your report shows any CA's noted combined with snoring the Vantage is probably not the ideal machine for you. The problem is that machine has no limitation on pressure responses when the snore trigger has been tripped (i.e. it keeps increasing pressure as long as the snores are present). The problem is it ignores any CA detection during that process so it ends up increasing pressure firing off pressure induced centrals that the machine then confuses as obstructive. What you end up seeing is 95% pressure that is a moving target and nearly every time you are awaken the machine is blowing at full tilt. There are ways around it, like limiting the Max. pressure to your PSG found titration pressure and carefully setting the Min. pressure. Or you can use a Remstar Auto with Cflex and avoid that problem altogether. It's snore detection circuit has a response limit which avoids that problem altogether.

I'm sure your RT and DME would like you to avoid sites like this because you find out exactly just how dishonest they are. I'd return the Vantage along with the Escape if it were me.

Did they put you on any medication for the PLMD? You may not sleep better or see improvement until they address that as well.

[curtcurt46]

What was your PLMD index and what was your PLMD arousal index? Mine was 100 and 10 respectively. At this time I am trying to get the correct level of medication (requip). Beside all the new stuff to get accustomed to the PLMD can only compound the arousals. If your PLMD arousal index was above 5, then the doc need to address this.
Hang in there because it can get better, it just takes time.

[snoregirl]

I think you have answered your own question on what type of a machine is best for you.

You have found that at a high pressure (15 you said you were) an auto titrating machine can keep you at a lower pressure much of the night, making mask leaks less and over all increase comfort.

While it sounds like you doc is willing to listen, remember if he is not a user of CPAP himself he may not fully understand the advantages of APAP.

In addition to Snoredog's comments, Resmed machines do not allow you to use exhale relief in Auto mode, so Cflex on the Respironics machine is the only auto machine to give you exhale relief (cflex) and no, CFLEX is not useless and most people do not return it as if you really don't like it you can turn it off very easily. You can also set an apap to cpap.

As for your 10 month rental. You may well be right about 2 years of copay. If that is truly the case, chalk up your copay from Aug and Sept or whatever you have paid to experience and cost of finding the right machine..., and buy outright from CPAP.com. $689 for the auto (non M) or a little more for the M and you are in business with no one to satisfy but yourself. You have the masks, other supplies are minimal and much cheaper online. Can get an auto with your current script.

I love my Respironics Auto and plan to buy another just like it for backup and travel (so I don't have to move the current one.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, resmed, cpap.com, cflex, CPAP, auto, APAP, Travel

[NightHawkeye]

My insurance requires 10 months of rental. Do you think that is to ensure I will have to pay the deductible for 2 years? Hmmm.

I was told that by my insurance, too, Catnapper, but after persistent questioning it turned out that they would allow online outright purchase.

It might be worth questioning your insurance provider bluntly, about why they would want to pay much more for a rental rather than allowing you to purchase online. Just because insurance usually does it by rental doesn't mean that they have any rules requiring that.

Regards,
Bill

[Catnapper]

Thanks for the replies. I will try to answer.
I had no central or mixed apneas, and I think that is a good sign. One less thing to worry about.

The PLM Index was 103 before CPAP and 22.2 with CPAP. I had no idea I was dancing all night. The graph of that is pretty energetic looking. No wonder I was tired. That may indeed be the reason I am still waking up so frequently. I will be sure to bring that up when I have the follow-up appointment. Are there other effects from that medication?

As to machines, the Vantage is strictly a loaner. It will go back as well. The way that worked out is that I continue to pay rent on the Escape and they let me use the Vantage for free because the doctor wrote a prescription for using it to get more data. I was told by the RT that there is no outright purchase because I had heard from the insurance company that buying was cheaper than renting. I am glad I did not press to buy that machine. I would be stuck with it. Maybe being ignorant came in handy that time. I will press the issue now to see if straight purchase is an option,

One of my problems is that I want everything the minute I realize I want it. No patience here. I have seen improvements. I am very happy to be able to see the reduction in AHI because that surely means I am making progress, and most likely have improved the O2 saturation, although I have no way to test that. I would not have that info using the first machine either.

My prescription says: Referral for Home Medical Equipment.
Diagnosis: Obstructive Sleep Anea Syndrome
Mode of Therapy: ResMed Escape S8 or Elite.
(Does that mean I am restricted to those machines? )
It goes on to list the pressure settings, mask, ramp, humidification, and a chinstrap.
So far I have not needed the chinstrap.

I appreciate the responses I have received. Great insights and suggestions. I am so glad I finally decided to post. I am not usually shy. Thanks again.

Catnapper

[jeepdoctor]

Catnapper, welcome to the club! The RT at my DME told me that CFlex was the ramp-up function from 4 cm to the full pressure setting. She also told me that only she could adjust the CFlex setting. The look on her face was priceless when handed her the CFlex functional explanation that I lifted from the Respironics web site and then read to her the CFlex adjustment procedure from page 10 of the Owner's Manual.

You might try what I did with my DME. I talked to the store manager and told him that I wanted to trade in the rental Remstar Pro 2 CPAP for an M-series auto. The unspoken implied threat was that if he didn't play ball, I would turn the machine in, buy a Remstar M auto from U.S. Expediters and he would lose the rental payment stream. (I had mentioned U.S. Expediters to him in prior conversations and told him the price U.S.Ex sells the M auto for.) I am now the happy user of a M auto.

To be fair and balanced, my DME sold me the Encore Pro package for $ 100. U.S.Ex charges ~ $ 184 for the package.

[kteague]

Hi. You asked about the meds for PLMD. Can't speak for Requip. Others here have tried it and some report success with it. I take Mirapex. No matter what they give you, it is best to keep the dose at the minimum effective amount. They all have potential side effects. Controlling the PLMD in conjunction with your OSA therapy is more complicated in that it's hard sometimes to know which one your daytime symptoms may stem from, and you don't want to bark up the wrong tree. For other people's experience with particular meds, you can visit askapatient.com. Best wishes.
Kathy

[snoregirl]

On the question of your prescription....

Why would the doc put a brand on it unless you requested it??

Makes me wonder why since there are a number of good manufacurers and it is impossible to predict which might be better for whom.

Unless Resmed reps (like drug reps) are visiting the doc and telling him how great their stuff is. Given the pricing issues with the internet suppliers, I wouldn't put it past them to be flooding doctors offices with sales reps.

I would ask CPAP.com if you can use the prescription that says Resmed for any machine. I would guess yes but check. If your insurance turns out to be good (3 month rent to buy or ok to outright purchase) ask the doc for a different prescription. But decide what you want first so you don't have to go back to him multiple times.

If you want auto, he has to write APAP or Auto titrating CPAP and a range for you (maybe 13 - 17 or 12 - 16) or local DME won't give it. If you want Respironics have him write "with Cflex" as Respironics is the only machine with Cflex it goes without saying....

Good luck. I understand the patience thing. I too am not by nature a patient person. However, you are started and have therapy, now you just need to figure out what you want and get it and see if you can get insurance to pay.

If they won't do a straight purchase or 3 month rent to purchase, you can have whatever you want overnight mail from CPAP.com. So just concentrate on deciding what you need and how to get it as cheaply as possible.

[Guest]

You should have been given a PLMD arousal index. These are the movement that disturb your sleep and take you out of a sleep stage when you may not want.
I am taking requip and have for almost 4 weeks. You take it about 1-2 hours before bedtime. It make me a little sleepy and I have had a few mornings where my legs were uncomfortable and this is called restless leg rebound. It lasts for a few hours and goes away. I believe my dose will have to be increased further. If you go to requip.com there is tons of information. Mirapex and requip are two of the newest drugs used to treat PLMD. I also have Restless leg syndrome, but it never kept me from sleeping as far as i know. My restless leg is much improved. I have had none of the common side effects mentioned on the requip web site. See if you can find out your PLMD arousal index and speak to your doc about how to treat your PLMD.
Good luck and let us know how you progress.

[Offerocker]

I also take Mirapex for PLMD.
I KNEW that I had that problem, because it causes me problems during the day, usually late afternoon. It has gotten better with exercise and cpap therapy.
I am glad that you didn't experience the PLMD outside of sleeping - that's bad enough.
Welcome, and I'm sure you'll be an asset to the forum!

[rested gal]

On the question of your prescription....

Why would the doc put a brand on it unless you requested it??

Makes me wonder why since there are a number of good manufacurers and it is impossible to predict which might be better for whom.

Unless Resmed reps (like drug reps) are visiting the doc and telling him how great their stuff is. Given the pricing issues with the internet suppliers, I wouldn't put it past them to be flooding doctors offices with sales reps.

snoregirl, I think you're exactly right. It may be my imagination, but it seems I'm seeing more and more posts by new users who have been given that company's basic machine and the Swift mask. The Swift, I can understand. It's a mask that suits many people and is very appealing in that nothing is in front of the eyes or over the nose.

It would be good business on the part of that company to capitalize on the success of the Swift and make deals with DMEs to bundle their machines with it.

But more to the point of your surmise, I agree that resmed is probably aggressively courting the doctors. If they can convince doctors to specify "that company's name" on the Rx....

I wouldn't be surprised if one of their most effective tactics with doctors might be to pull out a fancy chart or two based on those #@$% artificial breathing machine "studies." Even smart doctors might be impressed by those artificial tests, not fully realizing how utterly meaningless they are when feedback breathing from a live human is not in the loop.

Welcome to the board, Catnapper (great nickname! )

You've obviously done your homework well. Hope you're able to get the autopap you want. You'll certainly get plenty of support here. Enjoyed chatting with you and your son in the chatroom earlier this evening.

You may have already seen this clickable link --

Mile High Sleeper's great information resource for cpap users.

[snoregirl]

What made me think is I have a friend who used to be a salesman for a pharmacudical company. And, I know people in doctors offices now. The reps are in there all the time. To the point of the office having to post "no reps today when they are booked tightly". That is of course where all the free samples of meds doc's have come from and the pads of paper with the med logo etc.

It only makes sense that companies like resmed would send reps too. Just a guess on my part but why else would a doc have a preference unless he is really into sleep stuff or is a user himself.

The strange thing was perscription written for the elite or escape. Two quite different machine, one with exhale relief one without, one with data one without. If he had a preference he would have picked one with the features he thought valuable, especially knowing that the patient's insurance would probably pay the same amount for either machine. Not just specified a brand.

[Guest]

A lot of doctors write prescriptions for specific machines for any number of reasons. Some of them are just more comfortable or familiar with certain machines, some docs simply don't like certain units. Some docs feel very strongly one way or the other on the cflex/epr arguments. Some doctors simply want as many patients as possible on a specific machine for ease of tracking change. I think a lot of docs - just like everyone here - just flat out have a favorite machine.
And then yeah I'm sure some are called on by reps and get extolled on the virtues on one machine over the other.

[Wulfman]

Interestingly, my sleep doc put "w/C-Flex" on MY prescription.....which would have narrowed my selection down to Respironics machines. Other than that, he didn't specify a machine brand or model. At this point, I'm sort of glad he did because I wouldn't want to be tied to a ResMad machine (yes, I misspelled it on purpose).
I purchased all of my stuff from CPAP.COM (out-of-pocket) and then billed my insurance and was reimbursed at the in-network rate.

Unless you think you really WANT a ResMad machine, I would have the doc re-write the prescription to be non-specific as far as the manufacturer goes.

Best wishes,

Den