Dr debacle and the non-compliant mother (long post)

[WillCunningham]

Howdy,

First off I just want to say how much this forum has helped me. I keep finding tips, suggestions, and information that directly impact my cpap usage. For example the effect of acid reflux on cpap therapy. This really is a great resource. I am trying to help my mother become compliant with her cpap therapy and am hoping for a few suggestions.

My mother has had sleep problems for at leat 15 years, she has been diagnosed with chronic fatigue syndrome and fibromyalga. She had a sleep study about 5 months ago and it came back that she is suffering from OSA. As a cpap user who still gets the "cpap high" I can't help but think that many of her health issues are at least made worse by the OSA and sleep deprivation.

The sleep tech said that she was a very active sleeper and that she was very sensitive to pressure changes during her sleep study. I beleive the highest they managed to get her pressure and still keep her asleep was 7 or 8 cm of pressure.

One of the main problems for her is a bit of clastrophobia, particularly with full face masks. She had a really bad experiance wearing a full face mask during a surgery. The full face mask was delivering her anesthisia and it did not kick in before they cut into her. She felt the insision but was prevented from saying anything about it byt the face mask. That was a fairly bad experiance for her and amazingly enough only left her with a slight case of clastrophobia. She has also woken up many times gasping for air, which is also a clastrophbic feeling. That was her OSA acting up, but it still combined with her mask clastrophobia to make her really dread cpap therapy. My father is also on cpap and having a great deal of success. Her dread of the therapy, even after watching my father have such great results, made her postpone getting her sleep study for a really long time. She really questioned her ability to comply. I think the main reason she even made and attempt is because my father and I were so worried for her and pressured her to get tested.

She ended up with the breeze nasal mask because it did not trigger her claustrophobia that much with it's design. That combined with some anti-anxiety meds have allowed her to attempt her cpap therapy. She does not keep the mask on all night long. She will to sleep with it on, but wake up not wearing it. She is not sure if she is tearing it off in her sleep or if it coming off because the headgear does not fit her well. She did note that the headgear rides up her head and does not stay on well, even when awake. Last week she woke up gasping for air with the mask still on, and that "no air" feeling combined with having to get the mask off finally convinced her that it was time to try something new.

My father and I have been speculating about what could be contributing to her lack of success with cpap so far. We both think that the Breeze mask is a major part of the probelm, if the headgear rides up and gets too loose while she is awake, it definately can't hold up well at night. We also are a bit suspect at the quality of her sleep study. We figured that her clastrophobia and the uncomfortableness of the sleep study environment might have colored her data leading to a pressure that is a bit on the low side. She has also gained a bit of weight recently and we suspect that could also lead to a "not high enough" pressure.

Her doctor has not been very proactive about helping her get compliant, he pretty much reads the compliancy data and says "you need to wear the mask more" and sends her on her way. She had a doctors visit scheduled and asked her doctor about possibly bumping her pressure up a couple of notches. The doctor thought that was a good idea and told her to use the ramp feature of her remstar pro2 w/cflex machine. Obviously the Dr does not really know much about the machine as the "ramp" feature will not raise her presure at all. I am also pretty sure that her machine is not configured to use the cflex feature either...sigh. DME's and Dr's...ack.

Given the Dr's apparent lack of concern and interest, I am trying to take a more proactive approach to helping my mother find a solution that will work for her. That is where I could use some advice.

I just ordered a respironics biPAP auto machine with the software. It should arrive tomorrow and I am very much looking forward to using it. I am thinking that after I get comfortable with the machine and figure out how to configure it, I could set it up and then loan it to my mother. She will be able to get some data gathered in her home environment where she is comfortable without tons of probes stuck to her...and we can get some new average pressures to try for her and get programmed into her machine.

The thing is, with the breeze not working so well for her, I think we need to find a different mask before that would be a viable test. She does not live particularly close to me either so it would work out best if I could get her setup one day, let her use the machine for a week, then pick it up the following weekend. I figure I could show my sister how to use the software so we can make mask adjustments and pressure min/max adjustments if needed during that week (assuming 1 week is enough time to gather useful data).

I went down there this weekend and had her try my Activa mask. She was horrified by the pressure when she tried it on with my current loaner machine (17 cm pressure). After realizing how stupid I was, I managed to talk her into trying it again with her machine. With the lowwer pressure she saw how the technology worked and thought she might be able to tolerate it. She was not "this will work for sure" but she wasn't dead set against it either.

She has tried my fathers Comfortlite 1 nasal pillow system as well, it also had headgear issues for her where it refused to stay in place. She tried and failed using one other type of nasal interface. It was either a nasal aire unit or possibly the Mirage Swift unit. I think it was the nasal aire, but I don't know for sure. I have seen many people post about thier success with the Swift setup and I was thinking that might be worth having her try. She is up for her 6 month replacement mask, so I want her to get one that has a good chance of working for her. I wish she didn't live 2hrs away from me, my DME is actually pretty helpfull and let me try on a number of masks to find a good fit. I would love to get her in there so she can try some stuff.

Anyone have any suggestions or ideas about how to proceede? Do you think I should try and get her a swift or go with the much bulkier, but at least tried on, activa mask? Is the biPAP auto test a good idea or should we just wing it with her machine that doesn't have efficiency data? Thanks for reading this mamoth post!

[Sleepy-in-AL]

You might look at the hybrid mask. I don't have mine yet and I'm not closterphobic with my UM FF, so I can't give advice from that standpoint. However, it seems like since it doesn't go over the nose and leaves the sight line clear, it would be less of a problem in that regard.

Good luck!

[inacpapfog]

I would also suggest the Hybrid, simply because it would cover the issue of mouth leaks/ breathing. By all reports, the nasal pillows are soft and no -leaks. Just sounds like a good starter mask to me. I've ordered one myself and hope to report back on its effectiveness and comfort later next week!

[kteague]

Hi, Will. Your mother is fortunate that you are persisting in helping her. At least she didn't pull rank and tell you to leave her alone.

My mask experience is pretty minimal - Swift and Breeze.

Because I usually sleep on my side with my hand against my face, I kept pushing the Swift out of place, and it just didn't feel right to have anything but my hand against my face. Aside from me being a little quirky about that, the Swift was okay from a breathing perspective - as long as I slept on my back. It was just a little rough on the underside of my nose.

And then there's the Breeze - I chose it specifically because of no straps around my face. The downside to that is it can easily shift when moving about during sleep, and then the dreaded leaks wake me up. It seemed to need just a tad more stabilization. SOLUTION: I wear a ladies stretchy but sturdy headband, or a sweatband which I place over my head and pull down around my neck till my headgear is in place. Then I pull the back up over the rear of the headpiece, and the front up over the facegear at about the forehead level. No more shifting. But even so, I fought with the Breeze for months with chronic leaks until I decided to try a smaller pillow. I had been given the large at my study, and they seemed to crumple and allow leaks. Recently acquired medium pillows - what a difference they made. Leaks are now infrequent and minimal. Maybe a couple modifications would make the Breeze still a viable option for your mother.

All that said - I still take the daggone thing off in my sleep and don't even know I did it. I think my next move is to take one those little magnetized alarms, set it on 'chime' so I don't have a heart attack, attach half to my headgear, the other half to a hair barette, and maybe I can train myself to avoid the chime. Now, the full alarm would make for rapid behavior modification - but there'd better be a medic nearby with a crash cart.

Best wishes with helping your mother figure this stuff out. Glad she's got you.

Kathy

[Goofproof]

You state your mother has the pro2 with c-Flex, why won't it collect full data, it should if it's the pro 2 model. Maybe that's another thing the Dr. doesn't know. Could you take her into your home for a week to get her lined out?

Jim

[WillCunningham]

I have been following the hybrid mask myself, that looks like one cool mask. I played the videos on their site for my mother. She did not think it would work for her, having her mouth covered is a big trigger for her clastrophobia. I thought having the eyes unobstructed would help with her clastrophobia too, but she got creeped out just watching the video.

Lol, I have been trying to avoid being overly annoying so I can avoid the pulling of rank. I don't want to push her too hard but I really want her to experiance the benifits and quality of life improvments that I suspect she will have.

That is an interesting point about the Swift and sleeping position. That was one of the sleep tech's primary concerns for her. She was actively moving around during the whole study. It sounds like the Swift might not be silver bullet solution for her. I was leaning towards the activa just from how well it has been working for me. I figure if she ends up unable to tolerate it, my dad could always use it and we can try to get her something else.

I will suggest the headband trick to her for her current breeze setup, that is a great suggestion. She gets a good seal with the pillows she has so I think that the mask would work for her if it would stay on her head. I know the headgear is not good enough as is, but I also suspect that she ends up removing it to get more air while asleep.

Lol, I am so glad you mentioned that Jim! It does collect the full data. I don't know if the Dr got that wrong or my mother passed on the info incorrectly. I must have looked at the wrong model when I looked into it. That is very handy news. I would have a tough time convincing her to stay at my place, but my sister lives very close. I can setup the software/reader on her laptop and she can give me the updated numbers so we can see how things are looking. That will make things so much easier, whoo hoo!

This is exciting, I can't wait to see how this works out.

[Linda3032]

Will, when you introduced yourself to the forum, you mentioned your mother and her mask problem then. I recommended the CL2 (ComfortLite 2), because it actually comes as nasal pillows and a nasal mask. That way she could try two new interfaces instead of one.

If either of them are too loose on her, introduce her to the "panty-hose" strap. It is stretchy and comfortable - but stabilizes most masks - especially with headgear that slips during the night.

[chdurie2]

will--

i'm pm'ing you about other issues that you've raised.

caroline

[rested gal]

Will, you're a good son! Hope you can get your mom dialed in better.

I'd add this suggestion to the ones you plan and those that others have mentioned:

Instead of having someone else do any downloads and relay the data to you, get your mom an extra Smart Card. Her machine probably already has a Smart Card in it. The extra will be for when you have her mail her Smart Card to you once a week, so you can download her data directly onto your own computer.

Just create "another patient" in your own Encore program to use for downloading your mom's data. That will keep hers separate from yours in the "Patient" list. She can stick the spare Smart Card in her machine when she mails her original card to you. Back and forth through the mail once a week, with her swapping the card each time.

That will also give you time to look at a week's worth of data and "create a new prescription" when you think changes should be made. Changes can be made for her by someone pushing the buttons on the machine, of course, if changes are needed before she'd be receiving the card back from you.

If you get a "family" Activa, I'd suggest ordering a Shallow cushion for her. Might fit her (or your dad, for that matter) better than the Standard.

The Swift would likely suit her well, too.

If this hasn't been done already, you might want to figure out a way to hang the air hose overhead for her. Would help keep the air hose from tugging ANY mask out of place during her toss'n'turn sleeping.

Is there anyone who could observe her sleep for a night? A family member whom she wouldn't mind being there with her and who would be able to stay awake all night? I was just wondering about mouth air leaks. Her waking up gasping could be from treatment air escaping out the mouth. She might be starting out the night with her mouth closed, but mouthbreathing or lip-puff leaking later on when she gets into more relaxed stages.

The data is going to show if there are massive leaks or not, but given how much her Breeze is shifting out of place or coming off, it would be impossible to tell if jumps in the leak rate are from the mask shifting and partially losing a seal or if the leaks are from the mouth.

Good luck! Your mother is fortunate to have you working on this for her.

Oh...one last thing. I'd have her continue using her Pro 2 with C-Flex during this experimentation. Check her data from that. It's a LOT easier to make single pressure changes than it is to throw into the mix all the factors that could come into play with the BiPAP Auto. I recently bought myself a brandnew BiPAP Auto with Bi-Flex -- got a real bargain in a private purchase. Cool machine, but I don't think it's what would be good for trying to see what pressure your mother needs. If you had a regular autopap, I'd say yeah, go for the pressure search with an autopap. But the BiPAP Auto is a different animal, as you know, and could make the whole data gathering experiment more confusing than helpful.

[WillCunningham]

I didn't mention it but I don't think the CL2 would work for her either. I think the interfaces are fine, she was able to get a seal with my fathers CL1, both the nasal mask and the pillows, but once again the headgear doesn't stick to her head that well. I think the CL2 headgear would ride up as well, it did for me when I tried it. Still I am hoping either her DME will have one on hand for her to try or that she could switch to my DME who does have them in stock and had me try one one.

I mentioned the headband/pantyhose trick to her last night and she was going to try it, hopefully that will help keep the headgear on and might widen her choice of potential masks.

The extra smart card suggestion is a good one. After we get her setup so everything is working, that would be a handy way to keep an eye on it and see if any changes are nessicary. The shallow/small activa mask is definitely the way to go for her, I have a similar nose size/shape and a small worked best for me.

My sister volunteered to watch her sleep for a night to help figure out why she takes the mask off. I figure that will be good test for after we get her setup with a new mask, or get the current mask more secure.

I agree that sticking with her Pro 2 is the way to go. The main reason I didn't consider it originally was because of my incorrect belief that the machine did not store efficeincy data. There is a definate chance that we don't need to modify her current pressure setting at all if we get the mask situation under control. I am going to make sure the cflex is on, but I think the real trick will be getting an eyeful of the data from the smartcard.

The thing that is most tempting is to make many changes at once, I think we will have to resist that urge and plod along methodically. I am sure we will get it though. Thanks!

[winknblinknnod]

As a fairly new cpaper who also struggled with claustrophic issues, I can report that two things helped, going from straight cpap to one with exhalation relief (felt more natural, not fighting the "wall of air") and also I found the CL2 with the simple cushion was less oppressive than nasal pillows.

Good luck, you are really helping your Mom out here, esp. once data starts coming in....

[Guest]

Will,

I spent the first several weeks of my CPAP therapy fighting against really terrible feelings of claustrophobia from my Mirage Activa Mask. Despite the fact that I knew that the machine was providing me with air and that I could open my mouth if I wanted to, I felt like I was suffocating. While it was better than the gargantuan mask I'd used during my sleep study, it still gave me the willies.

After trying the Swift Nasal, which didn't work because I felt as if I couldn't exhale properly, which brought on the suffocation/claustrophobia symptoms again, I've finally settled on a regimen of switching off between the Mirage Vista and Respironics Comfort Curve. Both are very small -- fitting just over or just under the nose -- and both provide a clear range of vision which I have come to realize was part of the problem for me with the Activa: I would wake up or being laying there awake and couldn't even stare at the ceiling because I couldn't see around this massive thing strapped to my face.

I would strongly suggest that your mother try either the Activa or the Comfort Curve.

As a fellow sufferer, I know a little bit of what your mom is going through. She's lucky to have you and your dad as active partners and facilitators in her therapy.

If I can help in any way, send a reply or PM me.

Kurtchan

[Darth Vader Look]

Will, I too use to use the activa and I am very claustrophobic. I use the UMFF and still find myself reaching for the clip to remove it. One thing to remember with the activa is to keep the C-flex setting down to 1. At 3 I found that the activa felt like it was humping my face and my pressure setting is only 7 to 12. This could play havoc with your mother's claustrophobia. Remember you can always move the C-flex up if need be but if you scare your mother off, you are back to square one with her.

[ozij]

In addition to all those great suggestions above, you might want to take a peek at:

Setting up the Breeze

O.

[Guest]

Oracle from Fisher-Paykel

this mouthpiece mask gets very few good comments, but it seems that from the ones of us who like/use it there is not ANY problem....

NO clasustrophobia issues
NO leaks

While I realize that there is no perfect mask ... the Oracle is perfect FOR ME

You might get your mom to try one, if possible

good luck

horse