Frustrated and need help ... (long, sorry!)

[Ron439]

I have had the worst week dealing with doctors!! Funny, when I came online just now to try to get help, the first post I read was a very similar situation to what we're facing now. My husband has been on CPAP for about 3 months ... started with S8 Elite, changed to Auto Vantage. He was originally prescribed 18 cm pressure with the Elite, and now with the Vantage, is effectively using nearly half of that, which tells me that they were way off with the sleep study. His AHI with the Auto is still higher than I'd like to see, and he is still having a lot of trouble with mask leakage. What I would like is for someone to look at his data and help me optimize his treatment (I have the ResMed software). This is what I have done this week:

First call was to the Respiratory Therapist at the DME. He said that they basically just provide equipment, that they don't analyze data. And they, of course, can't make changes to equipment, etc, without the doctor's order. BUT, if I were to call the sleep center, they would be able to look at either the data card or printouts to give me some feedback, and said that if the center wouldn't take the data from me directly, they could help by being the runner in the middle. And that they could provide a pulse-ox overnight for free if we needed it, to see the severity of the near-constant hypopneas. Seemed like a fair start, and I was encouraged by their willingness to help in their limited capacity.

So I called the sleep center. They won't talk to me at all. Basically all they do is administer the sleep study, and the results are sent to a pulmonology specialist for analysis. I am not allowed to contact this specialist, and must go back through my doctor to have anything done, even to change the mask from full-face to nasal (which I know is a bunch of bull) or to set a pressure. Told me that I need to call the doctor to analyze the data himself and that they can't help me.

Now it goes from bad to worse. I called the doctor, who is not a sleep doctor, he is an ENT. He pretty much tells me that his hands are tied, that he thinks the data coming off the machine is worthless, and there is nobody else I can talk to. That getting an overnight pulse-ox wouldn't help at all (he believes it wouldn't be synchronized with the CPAP, I know better and couldn't convince him). He says the only thing he can do is to order another sleep study with titration, which we are not in any position to do, due to an imminent change in health insurance. I asked him if that was it, then, that once Ronnie got a CPAP machine, were we left on our own with no follow up at all? The answer was YES. That he got us a machine, and because it is working (although potentially not optimally) that we are on our own. That if the machine did not work for Ronnie at all, he should have surgery. There is no in-between, no "customer service", no feedback at all. Machine with no follow-up support, or surgery. End of story.

I am very frustrated, to the point of not being able to sleep tonight (which is why I'm up right now, got out of bed to try to find help). The machine is working for him, that is obvious, but I think it could work better. He is still falling asleep when he sits down during the day. I can't believe that we are completely on our own now! Is there anyone here who can look at the data from the software and give suggestions on what to look a little closer at? I don't know how to do screen shots, so can't post them. Can anyone help? Please??

[Slinky]

When you are established with your new insurance, find a REAL sleep specialist at a REAL sleep lab.

But meanwhile: its not clear whether you are using AutoScan or ResScan software. I have ResScan but haven't used it much as I have it installed on my laptop. I most always use AutoScan which is installed on my desktop. I didn't notice that there was that much difference between the two in the little I've used the ResScan software.

We can make do w/o the scans of the summary report for now. Open your Statistics page, Select the last two weeks of data. Now type up the 3 Pressures (95th percentile, median and maximim), the 3 Leaks, the AHI, AI and HI and the Pressure Settings. We can make some suggestions based on those figures.

Also, go to the top of the page, click on the Red Ball w/the Question Mark in it. Scroll down to Mask Fitting and have your husband try the various suggestions in those posts to see which, if any, will help reduce the leakage. Meanwhile, do be aware that these newer xPAPs are capable of compensating for quite a bit of leakage. It may well be that eventually his pressure can be lowered as the leak rate is lowered. What do you have his Settling set at? It should be set for the length of time it USUALLY takes him to get to sleep after starting his auto.

[TerryB]

I'm positive that if you post the numbers, folks here will be able to help you understand what they indicate.

Also, since you're awake and Ronnie may be asleep, take a peek and tell us how he is behaving during sleep.
Is he peaceful?
Is he snoring?
Is the mask leaking air so as to make noise?
I guess he is still using the full face mask, that eliminates some problem areas, but has some of it's own.

When I began treatment, I woke up fully a lot, which was worse than the partial arousals from the apnea. I get much better rest now.

Hang in there,
TerryB

[jburnham]

First, you have my sympathy and I'm sure most of the people here have had similar experiences and hope things get easier for you.

For me, it helps to feel a little more empowered when dealing with the roadblocks our insurance and medical system throw up. You have control of the situation and some choices. If you're fortuneate enough to have some money, you usually have more choices and easier choices.

You could start working with a new sleep specialist today. Your insurance may not cover anyone you like or may not pay for it, but you always have the choice of going somewhere else. Sometimes it's worth it to get the medical treatment you need even if your insurance won't cover it. Sometimes it helps to just remember that you have that option.

You probably have the option of changing your primary care physician and/or selecting a different specialist on your insurance. Based on your experiences so far, I think that is a good idea. That's about the last economically viable choice patients have these days - switch providers. I doubt every doctor will tell you that you have to start over with a new titration.

You can also take a more active role in your husband's medical care. It sounds like you are already doing that. Your comment about "I know better" is probably correct. I guarantee that there are people in this forum who know a lot more about the effective use of xPAP than the average sleep doctor, ENT, respiratory therapist, DME provider... Most of those people have never used xPAP themselves.

I don't think our medical and insurance system has a clearly defined role for supporting xPAP users. Doctors diagnose and determine whether you have a condition requiring treatment and then outline the treatment in very broad terms. The rest of the players are basically there to perform the minimum work at the minimum cost to make it possible to get that treatment. A good doctor and informed/involved patient can sometimes influence the rest of the players to give them the support they really need. And there are certainly exceptional doctors, ENTs, therapists and DME providers who personally think their role is about supporting the patient and making them well (I'm feeling very lucky to have a good team lately). The average patient with the average support team does not have the support they need. Thank goodness for this forum and the people on it.

I'm fairly new to xPAP but will offer my suggestions while the experts are sleeping

If his mask is leaking badly enough, the data coming from the machine probably isn't very reliable and he isn't getting optimal therapy. I think getting a properly fitted mask is the first step. That doesn't require medical expertise. I bought the exact mask I used in my sleep titration study - mostly because I knew it wouldn't leak too much. If the mask used in the titration study fit well, try and get the same mask. If you can afford it, skip the insurance hassle and just order it online at cpap.com with return insurance. If it didn't fit well, find a DME supplier on your insurance who will let him try on several masks and find one that fits. If that is not an option , start playing mask roullette - there's a post about it in the forum - or you can play on your own by buying several masks at online retailers with return insurance, auctions, for-sale forums etc. Getting a properly fitted mask which doesn't leak and he can tolerate all night will be a huge first step.[/b]

[bdp522]

I'm proof that xpap can be done successfully without a doctor, RT, or sleep lab, having any input past the sleep study stage. My doctor told me to figure it out for myself..I did, with the help of everyone here. I've never seen or spoken to a sleep doctor. I hae Apria for a DME and for RT services...nuff said. I was titrated at a pressure of 7. I've been using a pressure of 9.5 for a year, with an AHI of under 1, usually under 0.5 and I have 0.0 several times a week.
If you can post your data you will get better answers. Here is link on how to post the data(photo);
viewtopic.php?t=18315
Most of all, don't forget that it does take time to get this all working for you. Once you get all the problems ironed out it can take time to see results. I know you're being asked alot of questions, answer them the best you can, it will help us give better answers.

Brenda

[kteague]

Wow, at least most make a feeble attempt at followup, but it sounds like you've hit a brick wall. Could that ENT have ulterior motives for not helping you succeed on cpap therapy... hmmm. There are good sleep professionals out there and hopefully you can find them if need be. But you've got a data capable machine, so I wouldn't fret too much since it appears you'll get more help here anyhow. (By the way, it is not uncommon for doctors to not be appreciative of machine data. It may not be a sleep study, but that does not negate it having a value in treatment.) I ended up here because I was not being helped by the sleep doctor (even tho seeing him regularly).

Mastering cpap therapy can take a while and require tweaking and sorting thru the obstacles. Your involvement will expedite the process for your hubby. I have used the machine he has, and you'll have no trouble finding help on here with the data. There's some gurus here.

Best wishes, sorry you got here the way you did, but - whatever works, right?

Kathy

[Ron439]

Okay, I've got some numbers. First of all, yes, we are using the ResScan software. For the last two weeks we have:
Pressures = 7.9, 10.8, 12.7
Leaks = 1.2, 11.4, 64.8
AHI = 9.6
AI = 1.3 (Percentage of time in apnea = 0.4)
HI = 8.3
Pressure settings on the Auto Vantage are wide open, set from 4.0 - 20.0 cm. Ronnie has had no trouble with compliance, we've got 100%, and he seems to sleep plenty, average about 8 hours (he occasionally has split nights, which makes things difficult, up to an hour in the middle of the night where he has to run to work).

To answer other questions, yes, he seems to sleep peacefully, though he does turn from side to side a couple times during the night. I hate it when he faces me, because he's more on the pillow which breaks the seal and causes audible leaks. In my direction . When he's on his left side, he manages to allow the mask to hang off the edge of the pillow. Since he first began CPAP therapy, he doesn't really snore any more. Used to shake the house. Every now and then I hear a tiny snore, but for the most part, silence. Aaaaah!

Masks. The Ultra Mirage FF was his first mask. At the sleep lab they tried a couple (don't know which masks), and since he was a mouth breather, they recommended the FF. His pressure was originally set at 18, which made it impossible for him to keep his mouth closed. We did (and still do) have a lot of trouble with leaking. Next I had him go to the Hybrid. He liked the more open structure, and felt like he was getting better air delivery with the nasal pillows. When we got the Auto, we found that he was using much less pressure, and he felt that mouth breathing was not as significant a problem. But the biggest problem with the Hybrid was that the nasal pillows kept popping out during the night, and were difficult to replace while still in bed (he would have to get up and look in a mirror to do it). Both of those masks came from the DME. The next logical step, in my mind, was to go even more minimal, and see whether a nasal pillow system alone, perhaps with a chin strap, would do the trick. In keeping with the open face structure of the Hybrid, I ordered him an OptiLife from CPAP.com, along with insurance. Insurance paid off in just a couple of days, the mask wouldn't stay on him because of the downward direction (and pull) of the tubing. He is now back in the UMFF, what he feels is the most comfortable option he has right now. I would still like to try a nasal pillow, and maybe one with the over-head hose would create a better seal and hold better for him (not slip off).

I am thinking I might be able to go back to the DME (surprisingly, the most helpful branch of our "team") and request specific masks to try, even though insurance won't pay for a new one till 6 months out. After reading some other posts here, I've got a list of them to research. I will also take into account the mask fitting tips. But my feeling is that in order to optimize treatment, it might take more than just a new mask. Look at the numbers and see what you think. And I can provide more specific information if needed.

I am so glad for this community here. I feel like I've got nowhere to turn in my local community. Makes me wonder how many other people here are going through the same thing, with no support. We don't have any "real" sleep doctors here, though are close enough to Washington, DC to find one, I suspect. I will wait until my insurance application goes through before checking it out. In the meantime, I've got all of you here .

Thanks again for all your support, and I appreciate any direction you can guide me in. I know CPAP therapy is the answer (not surgery), and really want to help my husband get the fullest possible benefit. Oh, and by the way, he doesn't go near a computer on a daily basis, so that's why I'm the contact here. That and the natural "mom will make everything better" thing! He's got my support, 100%, and I think I almost feel stronger about it than he does, which is why I've taken the proactive attitude. Thanks in advance for your help!!!!

[Wulfman...]

A few random thoughts.....

I have the same mask (UMFF) and like it very much. I like to wear mine with the straps loose on top and all of the tension on the bottom straps. Not too tight (that'll cause leaks, too) and not too loose.....can take a little while to find the right tension. Forehead cushion in the most vertical position. Proper sizing is important, too. If properly sized and adjusted, this mask should NOT inflict any pain or damage. If you have any fleece-type cloth laying around, you could make some covers for the bottom straps.....they help to keep the straps from leaving indentations on the cheeks. One of our members also sells them.....they're called "Pad-A-Cheeks".

Make sure that he shuts off the machine BEFORE taking off his mask. Taking the mask off before shutting it off will throw the leak numbers way out of proportion. It looks like the leaks may be driving up the pressure.

The pressure range of 4 - 20 is NOT a good idea. I would suggest something higher for the bottom pressure.....maybe around 7 for the time being.....till some better number can be ascertained.

Good luck and welcome to the forum.

Den

[Slinky]

Okay, I've got some numbers. First of all, yes, we are using the ResScan software. For the last two weeks we have:
Pressures = 7.9, 10.8, 12.7
Leaks = 1.2, 11.4, 64.8
AHI = 9.6
AI = 1.3 (Percentage of time in apnea = 0.4)
HI = 8.3
Pressure settings on the Auto Vantage are wide open, set from 4.0 - 20.0 cm. ...

Okay! Good. The Pressures don't look quite right tho. The first number is the 95th percentile meaning he spends 95% of the night AT OR BELOW that pressure. Which makes me think you might have transposed them?? That maybe the 95th percentile is 10.8, the median pressure the 7.9. The last number, the 12.7 is the highest pressure he's reached.

The same holds true for the Leaks. Again it looks like you might have transposed the 1.2 and the 11.4?? The 64.8 being the highest leak rate. The AHI of 9.6 isn't that far off the desired less than 5.0 so we should be able to get him below that 5.0. I'm kind of surprised at just how well that auto is adjusting for the leaks given the pressures its providing.

... he does turn from side to side a couple times during the night. I hate it when he faces me, because he's more on the pillow which breaks the seal and causes audible leaks. In my direction . When he's on his left side, he manages to allow the mask to hang off the edge of the pillow. ...

You might consider getting him a PAPpillow, that way there is a indentation for the mask and hose on BOTH sides of the pillow. Or there are other pillows that other members can recommend. I just use a nice, soft, full down pillow that I can squish into any shape, thickness, I want no matter what position I'm on, sides or back.

...
Masks. The Ultra Mirage FF was his first mask. ... We did (and still do) have a lot of trouble with leaking. Next I had him go to the Hybrid. He liked the more open structure, and felt like he was getting better air delivery with the nasal pillows. When we got the Auto, we found that he was using much less pressure, and he felt that mouth breathing was not as significant a problem. ... In keeping with the open face structure of the Hybrid, I ordered him an OptiLife from CPAP.com, along with insurance. Insurance paid off in just a couple of days, the mask wouldn't stay on him because of the downward direction (and pull) of the tubing. He is now back in the UMFF, what he feels is the most comfortable option he has right now. I would still like to try a nasal pillow, and maybe one with the over-head hose would create a better seal and hold better for him (not slip off).

Most masks that have the full 360 degree swivel you can either clip the hose to the headstrap over the top of the head w/a strip of velcro or put it between two buttons on his PJs if he prefers it down on his chest or even just create an overhead hanger for it. There are plenty of suggestions for these remedies here in the forum. RestedGal, for one, can give the URLs for them. She's one of our in-house, innovative gurus!

... I am thinking I might be able to go back to the DME (surprisingly, the most helpful branch of our "team") and request specific masks to try, even though insurance won't pay for a new one till 6 months out. After reading some other posts here, I've got a list of them to research. I will also take into account the mask fitting tips. But my feeling is that in order to optimize treatment, it might take more than just a new mask. ...

Hey, if you have a good DME it certainly is worth the try. There ARE some good local DME suppliers out there, just not ENOUGH of them! Nah, its just a matter of the right mask and the fitting tips.

There are others here better and more experienced at pressure range tips. I'm thinking, despite that 18 cm titrated pressure, based on that two weeks averages w/the Vantage that you might want to reset the pressure range from a low of 7 cms to a high of say 13 or 14 cms FOR AT LEAST A WEEK. Then post the one week averages for that week. BUT there are more experienced PAPpers here who may suggest a somewhat different pressure range. Use the SAME mask all that one week. But take advantage of the mask fitting tips for the leaks. Do NOT change mask AND pressure settings in the same week. You won't know which change made any improvements or worsened things.

[Ron439]

I'm sorry, I took the numbers directly from the ResScan software, which puts median first, followed by 95th percentile, then maximum. You were correct.

I will change the min and max pressures tonight. He won't be inclined to change the mask, I think he's more comfortable with this mask than the Hybrid. He's had the Auto machine since the end of July, so I can go back even farther with the numbers ... though it's pretty much the same story for the entire 2 months. One thing, though, I believe he sometimes takes the mask off before turning off the machine. I'll talk to him about that. And with the UMFF, his nose gets itchy, so he has to break the seal to scratch maybe once or twice a night. But the graphs show a strange leak line, and I don't know what makes it go up and down so often.

I'll also have him work on adjusting the headgear on the mask again. Maybe that will help.

Thanks! We'll work on it and let you know in another week or so.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): seal, auto

[Slinky]

Oooops! on my part. I didn't notice that Rescan posted the Median pressure first, AutoScan posts them 95th, Median, Maximum. Sorry 'bout that but glad you caught the difference!

Ha! I don't turn my CPAP off to scratch my nose! When my nose itches, I GOTTA scratch it NOW. To heck w/my leak rate, gotta get the finger under the nasal cushion and SCRATCH that itch!! NOW!

I'm thinking maybe the ole pro, Wulfman, has the better idea keeping the upper setting higher than 13, but I do think I would reduce it from 20. Maybe 7 and 16.

[Bookbear]

Hello!

Welcome to the wonderful world of hoseheads!

Check your PM's

[Nervous]

G7

Hello!

Welcome to the wonderful world of hoseheads!

Check your PM's

My problem is the amount of pressure is so great that when i exhale i feel like I'm breathing in used air and that makes me get panicky and nervous

[rested gal]

I know CPAP therapy is the answer (not surgery), and really want to help my husband get the fullest possible benefit. Oh, and by the way, he doesn't go near a computer on a daily basis, so that's why I'm the contact here. That and the natural "mom will make everything better" thing! He's got my support, 100%, and I think I almost feel stronger about it than he does, which is why I've taken the proactive attitude. Thanks in advance for your help!!!!

That was a wonderful thing to read! The way you've educated yourself about "OSA" and "CPAP treatment" on behalf of your husband is fantastic. He's a lucky man to have such an intelligent wife taking an interest in his therapy and helping him the way you're going about it.

Good for you. And good for him!