mild apnea: is the treatment worse than the disorder?

[robysue]

I have tried to sleep with the mask every night for the past week and a half. I have been able to sleep with it on for six hours total in the week and a half. I have already switched out masks once, with only slight improvement. I have broken out from the mask material, so now I have sores on my face where the mask hits. Also, I don't know if others have this problem, but it feels like the air is hitting my chin under the mask instead of going into my airway. The bridge of my nose hurts, and the leaks are bad-although not as bad as the Comfort Gel was. I am will to try pad-a-cheeks and stuff like that, if I decide I can handle this mask. I have sensory issues from the fibromyalgia and the seizure disorder, which is compounding matters.

What should Hea83ther try first to fix these issues? It has got to be awfully hard to find the will to go forward with a mask that genuinely hurts and causes sores.

(I have no experience with the full face masks so anything I might suggest would be totally uninformed.)

Good questions.

I also don't use a FFM. But from what I've read, my guess is that the starting place is to recommend things like these:

Mask liners from Padacheek might help with the sores. And a liner/pad under that nose-bridge support might help. Or a switch to either a hybrid mask (no nose bridge piece) or a nasal pillows mask with a chin strap if mouth breathing is a real issue might help.

As for this problem:

Also, I don't know if others have this problem, but it feels like the air is hitting my chin under the mask instead of going into my airway.

It sounds to me like the mask has not yet been fitted correctly. Or maybe it's the wrong size. Or there's a small leak and the sensation of air hitting the chin is due to the fact that additional air is flowing through the mask in order to compensate for the leak.

So a question to Hea83ther:

Why are you using a FFM? Has it been objectively determined that you breathe through your mouth for significant amounts of time during the night?

If not, switching to a nasal pillows mask may be a very reasonable thing to do.

[Hea83ther]

Robysue-

Thanks-helpful info to know. Definitely not giving up on it yet by any means. That's interesting about menopause; I wonder why that is.

I do have a copy of my most recent study. I need to get a copy of the first study done four years ago and compare them, to see if it's gotten worse, stayed the same, or gotten better with weight loss. The first study said UARS, but no apnea-however, docs interpret this differently, especially if it's mild. Second doc. said UARS and apnea (I had hypopneas, but no apneas). If it's worse, that's something I will seriously consider. I've looked into oral appliances, but have TMJ, so it would most likely not be a viable option, even if insurance would cover it.

I've read in other posts that you've written that you had quite a bit of trouble getting used to it, yourself. I'm assuming you followed all of the recommendations you're giving me at some point. How were you able to function and work for the few months you are getting acclimated to it?

[BlackSpinner]

I am not bashing CPAP, and it has helped many people; it has improved over the years, from what I have read. However, besides surgery, which is only marginally successful, there are no new treatments. 30 years is a long time for new treatments to not be invented, and many people do not tolerate CPAP well. It just seems that more money and research needs to be put into sleeping disorders (and all areas of neurology, for that matter), so that people who are not having successful treatment have other options.

I appreciate everyone's opinion and am glad that many of you have had improvements in your health; I hope I do too, and I am certainly taking your opinions into consideration-that's why I began this post. But, I still not have found any research that supports mild apnea increasing one's risk for a heart attack, stroke, or diabetes, and I would be interested in reading such research, as I have two doctors (both certified in sleep medicine) giving me very different opinions.

Well cpap treatment is simple, easy and effective and has no side effects other then some minor skin issues and some gas. It is successful and cheap. Broken bones are are treated exactly the way they were 1000or more years ago. No one has die from using a cpap machine properly compared to surgery. The major reason most people have problems with it is lack of support and lack of determination to make it work. If we felt the same way as babies we would still be crawling instead of walking.

You won't find any documentation with regard to CAUSE, you will find CORRELATION. The whole subject is much to complicated for a single simple cause. Who basically cares what different doctors believe? Believe the worst case scenario and you will have your risks covered.

[Hea83ther]

Oddly enough, the FFM is the only one I could fall asleep with the night of the study. Nasal mask hurt my nose even worse, and the air pressure (even though it's very low) burned the inside of my nose to the point of being in tears-no one really knows why, as that usually doesn't happen. I didn't breath through my mouth the night of the study.

[josh73]

Heather, just curious but size is your Quattro? The guy who delivered mine brought a large when my order was for a medium bc he said that the quattros run small. I used a medium mirage quattro for my titration night and had some of the issues you had. However, the size large mask hasn't given me any serious problems besides leaking here and there but I'm guessing all masks have those problems. I truly hope it gets easier for you.

[nobody]

30 years is a long time for new treatments to not be invented, and many people do not tolerate CPAP well. It just seems that more money and research needs to be put into sleeping disorders (and all areas of neurology, for that matter), so that people who are not having successful treatment have other options.

I will agree with you regarding other sleep disorders like narcolepsy, which is very difficult to treat. But with obstructive sleep apnea there is no need to invent something new because the problem is in the throat collapsing during sleep and the best way to treat that is to keep it open while you're sleeping. The CPAP does the best job of that. It's got it's annoyances, but they are minor IMO. The mask and how it fits and stays on your face during the night is the weakest link in the chain and probably the biggest problem people have. Many NEW masks have been invented to try and fix this problem for people. It's not that people don't tolerate it, it's that they give up to soon in finding what works. It DOES take getting used to and getting the right mask and you need to be persistent. If I had an AHI of 8 I'd still be looking for a way to reduce it, but maybe 8 is ok for you, I really don't know. If it were me I'd use the machine, but it's your life so hey I hope it works out for you either way.

[robysue]

Robysue-

Thanks-helpful info to know. Definitely not giving up on it yet by any means. That's interesting about menopause; I wonder why that is.

Current thinking is that it has to do with the reduced levels of estrogen. It seems as though there are far fewer physiological differences between postmenopausal women and men of the same age than there are between women in their childbearing years and men of the same age. And two places where this is evident are in women's risks for heart disease and women's risks for OSA. Pre-menopause, women are statistically much less likely to develop either heart disease or OSA than men of the same age. Post-menopause, the risks become roughly equal between men and women, but even post-menopause, women are routinely under diagnosed for both heart disease and OSA.

I've read in other posts that you've written that you had quite a bit of trouble getting used to it, yourself. I'm assuming you followed all of the recommendations you're giving me at some point. How were you able to function and work for the few months you are getting acclimated to it?

Yes, I've done just about everything I recommend to newbies in my long struggle to get used to CPAP. One exception is that I've never used a FFM so I don't really know how well the mask liners work. But others here swear by them and it seems reasonable. And I do know just how big a difference the headgear pads and nasal pillows cozy have made to my comfort.

As to how I coped during those initial six months of acclimating to CPAP? Well the frank answer is I didn't. I'm blessed with being a tenured college professor who was teaching courses that I'd taught many times before. And I relied very heavily on my husband and my colleagues and friends to help me get through the day and take over things that I just could not do. My department was rather forgiving in allowing me to resign from several committees that I didn't feel like serving on and I had really great TAs for the grading in two of the classes that I was teaching. Even so, getting the grading that I had to do by myself done was a significant chore and I missed the deadline for submitting final grades for one of the courses I was teaching. (That meant I had to file formal change of grades for every student in the class.)

I think that if I had it to do over again with the knowledge I now have, I would have asked much earlier and much more pointedly about whether some kind of support group for new CPAPers existed in the Buffalo area and I would have been a lot more proactive in fighting the insomnia right from the start. The nonexistence of a live CPAP support group is what finally triggered the PA's suggestion that I consider getting some counseling for the anger and on-going sensory stimuli issues in actually using the machine every night. The PA first made this suggestion about six months after I started therapy I think. And it took another two months to wait for the first available appointment with the CBT psychologist who's been helped me a lot.

And I honestly think that had I been able to work with someone much, much earlier on actively desensitizing myself to the machine's stimuli, my adjustment to PAP would have been much quicker. And in an odd case of irony, I just found out that the clinic where my now current sleep doc (whom I'm still unsure about) practices has started a program in the last two or three months for newbie CPAPers who are having trouble. This program has been described to me as follows: The newbie CPAPer works with a RT for about a half day. You bring your machine in and the tech has you work with your mask at your pressure and helps you on figuring out what kinds of things you can do to fix the leaks, make sure your mask is appropriately fixed, and deal with everything that's currently simply bugging you when you try to actually use the machine at night in your own bedroom. And for things that can't be directly "fixed", they'll make appropriate suggestions on things you can do at home to try to acclimate yourself to the particular issues you are having. All in all, it sounds very much like the kind of thing that I badly needed when I was about two or three weeks into therapy and floundering in terms of daytime functioning.

[Hea83ther]

I'm a third year special ed. teacher in an inner-city charter school, which is currently going through a paperwork audit by the state, so the timing couldn't be much worse, unfortunately.

The interesting thing about the mask issue is I'm fine wearing it when I'm awake and sitting up. It doesn't bother me much. Not too claustrophobic or anything. It's when I lay down that it bugs me; I'm good until it starts leaking, and then it drives me nuts! When I first put it on, I'm laying on my back and crank it up to full pressure-which doesn't bother me b/c it's only at 7. It seals fairly well at this point. After that, I turn onto my side, which is the only way I can sleep. It usually stays sealed then too, with some minor adjustments. Then, inevitably, after about five minutes or so, something starts to annoy me (mask uneven on my face, pinching my nose a litte, etc.). So, I try to adjust it again; then it starts leaking and I can't get it to stop. Then it's like I get stuck in this half-awake/half-asleep state, where I can't fall asleep totally, but don't want to get out of bed either.

[nobody]

That's exactly what happens to me with the mirage quattro every now and then for unknown reasons!! It drives me crazy and I don't get enough sleep and that's when I switch back to the Simplicity. Maybe you just need to try another mask. That quattro can be so annoying for the leaks and no amount of adjusting can fix it.

[Kairosgrammy]

Sorry, on ocassion, I act like a speech path. Innervation just means how well the nerves send signals to a body part, in this case the muscles of the throat/soft palate that must stay open in order to maintain an airway.

Nanwilson-

Kairosgrammy-

What is innervation?

Thanks-

[Therapist]

I was diagnosed with very mild apnea three weeks ago. My oxygen level did not go below 93% and my AHI was 8. ... But, my main question is: With apnea this mild, is it worth it to treat with CPAP?

What position did you sleep in the night of the study (diagnostic night not titration night)?

I would like to know what position(s) the study said you slept in and for how many minutes. Not what position(s) you think you slept in but what positions you actually slept in.

[kteague]

A few things jumped out at me in your post. I'm a bit short on time right now but I'll try to hit the high points.

If you have PLMD and if you didn't get much Stage 3 and 4 sleep, you don't really know if your apnea is just mild. If your PLMD was treated and you slept deeply, there's a good chance your apnea would show up to be worse. I have PLMD and in many sleep studies over 10+ years, the first ones didn't even see the apnea. Finally one said mild. The results progressed from fine to "moderate to severe". I am convinced my apnea itself did not worsen, but rather, my legs were controlled more, allowing me to sleep better and hence my apnea could fully manifest. That's my main point here - in your circumstances I wouldn't think it wise to make treatment decisions based on a "mild" diagnosis.

Some of your mask sensory issues can be coming from the simple fact you haven't had restorative sleep in so long your nerves are frazzled. I found with ineffectively treated PLMD my tolerance of anything irritating me was nil. Been known to throw a mask against the wall in the middle of the night. The calmer my legs are, the less I fight my mask, just because I'm generally less agitated. Not saying you don't still need to find ways to make your mask more comfortable. Every piece of the puzzle helps.

I haven't read the other responses yet, will try to later. Sorry if I've been repetitious or missed something that might have altered my viewpoint.

[Hea83ther]

Therapist-The results say that the first night, I slept on my back and my right side. Most of the hypopneas occurred on my right side and not my back, oddly enough (maybe because I slept on my side for a longer period). I don't know how many minutes, as I found this information under the RDI section of the report. I'm assuming this rules out positional apnea, as the position didn't seem to matter.

kteague-That's very good information to know, and I did not realize that. Some days, I feel like my autistic students (sensitive to touch, light, noise, etc). It's made me a more sympathetic teacher, for sure. They said the PLMD wasn't causing as many issues as the spontaneous arousals and the hypopnea episodes, but it was still an issue. I also have RLS, according to the doctors. However, I think all of them relate.

[kteague]

The flip side of that coin is that it is possible that as your apnea treatment is optimized, your limb movements will more fully manifest. I doubt you really have an accurate assessment of the severity of either at this point. With a data capable machine you can know when your treatment for OSA is effective. I would recommend that as being your first priority, then seeing what you are left with as residual issues to address. What exactly did your report say about your limb movements?

[linagee]

Robysue-

Thanks-helpful info to know. Definitely not giving up on it yet by any means. That's interesting about menopause; I wonder why that is.

Current thinking is that it has to do with the reduced levels of estrogen. It seems as though there are far fewer physiological differences between postmenopausal women and men of the same age than there are between women in their childbearing years and men of the same age. And two places where this is evident are in women's risks for heart disease and women's risks for OSA. Pre-menopause, women are statistically much less likely to develop either heart disease or OSA than men of the same age. Post-menopause, the risks become roughly equal between men and women, but even post-menopause, women are routinely under diagnosed for both heart disease and OSA.

I've read in other posts that you've written that you had quite a bit of trouble getting used to it, yourself. I'm assuming you followed all of the recommendations you're giving me at some point. How were you able to function and work for the few months you are getting acclimated to it?

Yes, I've done just about everything I recommend to newbies in my long struggle to get used to CPAP. One exception is that I've never used a FFM so I don't really know how well the mask liners work. But others here swear by them and it seems reasonable. And I do know just how big a difference the headgear pads and nasal pillows cozy have made to my comfort.

As to how I coped during those initial six months of acclimating to CPAP? Well the frank answer is I didn't. I'm blessed with being a tenured college professor who was teaching courses that I'd taught many times before. And I relied very heavily on my husband and my colleagues and friends to help me get through the day and take over things that I just could not do. My department was rather forgiving in allowing me to resign from several committees that I didn't feel like serving on and I had really great TAs for the grading in two of the classes that I was teaching. Even so, getting the grading that I had to do by myself done was a significant chore and I missed the deadline for submitting final grades for one of the courses I was teaching. (That meant I had to file formal change of grades for every student in the class.)

I think that if I had it to do over again with the knowledge I now have, I would have asked much earlier and much more pointedly about whether some kind of support group for new CPAPers existed in the Buffalo area and I would have been a lot more proactive in fighting the insomnia right from the start. The nonexistence of a live CPAP support group is what finally triggered the PA's suggestion that I consider getting some counseling for the anger and on-going sensory stimuli issues in actually using the machine every night. The PA first made this suggestion about six months after I started therapy I think. And it took another two months to wait for the first available appointment with the CBT psychologist who's been helped me a lot.

And I honestly think that had I been able to work with someone much, much earlier on actively desensitizing myself to the machine's stimuli, my adjustment to PAP would have been much quicker. And in an odd case of irony, I just found out that the clinic where my now current sleep doc (whom I'm still unsure about) practices has started a program in the last two or three months for newbie CPAPers who are having trouble. This program has been described to me as follows: The newbie CPAPer works with a RT for about a half day. You bring your machine in and the tech has you work with your mask at your pressure and helps you on figuring out what kinds of things you can do to fix the leaks, make sure your mask is appropriately fixed, and deal with everything that's currently simply bugging you when you try to actually use the machine at night in your own bedroom. And for things that can't be directly "fixed", they'll make appropriate suggestions on things you can do at home to try to acclimate yourself to the particular issues you are having. All in all, it sounds very much like the kind of thing that I badly needed when I was about two or three weeks into therapy and floundering in terms of daytime functioning.

In addition to estrogen levels, I would also look at blood iron, blood DHEA, and blood testosterone (Men and women have testosterone, just in different proportions.) I think people on this forum are a bit more "do it yourself"-ers with their own health. If you don't have insurance and you are a "do it yourself"-er, I would go out to directlabs (or a similar site) and get a men's/women's ten most important blood test. I get this about yearly and it gives a lot of insight to your health.
They use the same labs a doctor would use but without the need for their blessing. (Of course just like CPAPs, only a doctor can give a liability/malpractice insured answer as to what the blood test mean. And just like CPAP, yes there are a whole ton of people on the internet reading studies and figuring things out for themselves. Cheaper if you don't need the insured answer.)

None of the above should be misinterpreted as medical advice. You should consult your doctor.