Still New, Making Slow Progress

[DoninOrlando]

I am brand new to CPAP, started 10/23/09. Although I am making some progress, it is very slow and seems like it will take forever to reach a point where all this is "normal" and not a major ordeal to get used to . I am trying to concentrate on the most important steps, one at a time, in a logical order. It seems first is overall mask and machine comfort as without that, I cannot use the machine and no therapeutic results are realized.

After 8 nights, last night was the first I can say the mask was relatively comfortable and did not prevent me from sleeping. I slept 8 hours with the machine, up from an average of about 6. The machine settings were as comfortable as I can get them. My pressure is at 10 as prescribed, although at times it now feels not high enough. The humidifier is at 1, as that is the only setting that does not produce rain out and is comfortable to breath. I do not use the ramp as it is not enough air to breath and the 10 pressure does not bother me anymore. I use CFlex on 1 and am comfortable. I have a card reader and software on the way.

What would be the next thing to concentrate on, AHI, or Leakage ? Although I have made progress on both, they are still poor compared to most I see on here. My weekly avg on lkg is 41.5 L/Min although last night was 37.3, still very high. My 7 day avg AHI index is 17.9, although high is a great improvement from my sleep study. Last night was 13.8 AHI so that also is improving from other improvements.

Which should be addressed next and how? My assumption is improving leakage will improve AHI ? I plan to try taping mouth next as I am a mouth breather and suspect leakage there. I feel claustrophobic and hot in a FF mask so am trying to stay with nasal pillow since I am making progress there. Will lowering leakage rate lower AHI ? Or should I consider increasing pressure? Will increasing pressure lower AHI? (Assuming it does not increase leakage) If I increase pressure I was thinking .5 only. I tried 12 recently in the DME and it felt like sucking a leaf blower. Amazing the difference from 10-12. I am pretty comfortable with 10 usually. Thank you for any suggestions. This is a great resource and I appreciate all your help.

[cflame1]

I'd definately concentrate on Leakage.

That'll give you a better representation of what your true AHI really is.

[KatieW]

What would be the next thing to concentrate on, AHI, or Leakage ? Although I have made progress on both, they are still poor compared to most I see on here. My weekly avg on lkg is 41.5 L/Min although last night was 37.3, still very high

.
Hi, I'm a newbie too--2 weeks on cpap. Are you comparing your Leak rates with people who have a Resmed...because Resmed measures leaks per second, not minutes.

This is from my limited experience--raising pressure too quickly can result in aerophagia (excess gas). Since your AHI is trending down, work on leaks 1st. It may continue to go down, in spite of not changing the pressure.

Stick with it, it does get easier eventually.

[chester11]

I'm a mouth breather also at times. And full face masks can be very uncomfortable. What is working for me is the Mirage Liberty Full Face Mask with Nasal Pillows. It's kind of not like a real full face mask. The mask only coverers your mouth and the nasal pillows take care of the nose. It also cut down on mask leaks when fitted right.. The trick is to fit it right, don't make it too tight. It worked for me. It's a comfortable alternative to conventional full face masks.
http://www.resmed.com/us/products/mirag ... c=patients

[Pugsy]

Swift LT nasal pillows flow rate at 10 cm of pressure is roughly 33 L/min. Your last night of 37 L/min is really quite acceptable. (Only roughly 4 L/min leak) So while you do have some leak, it is not earth shatteringly huge. Yes, of course work on it as you can. You can try taping. I will tell you that the overall average that you are seeing on the machine can be slightly misleading. Did you reset the 7/30 day average numbers to zero before watching your numbers? If not then the number you see is overall number and not just one night. I can have leaks that are large enough to let events come in but short enough in duration that my overall average really isn't huge... So take those LCD numbers with a grain of salt.

When you get the software you will have a much better understanding of what is going on. Until then I wouldn't do much except get used to things since you have had some trouble adjusting. See if the leaks that you do have just happen to let some events sneak in before doing much with pressure this soon.

If you wish to reset those 7/30 day average numbers to zero each night and don't know how. This will let you do it.
==========Resetting LCD Display Data====================

To reset LCD Therapy data (does NOT erase any data from SmartCard):

1. Hold down the (<-) (->) buttons while plugging in the power on the back,
wait for 2 beeps or 5 seconds, release buttons.
2. Press the (->) key and navigate to Therapy screen.
3. Press and HOLD down the (-) minus key for 5 seconds and/or until therapy data is reset to Zero.
4. Press the (->) key to scroll back to main menu, press (+) key to enter Setup or
On/Off button to exit.

[Scarlet834]

My early experience is very similar to yours, with just about the same equipment. I'm glad you have software coming--you'll be very happy. I agree with cflame, the next thing to concentrate on is eliminating leaks. Removing leaks should improve the AHI if your other settings are "good" for you. You can't really "concentrate on AHI" except to use as a barometer to know you still need to optimize your treatment. And the average AHI is better than nothing, but nothing like the information you will be able to use once your software arrives. No substitute for looking at a specific night's data.

Unlike cflame, based on experience I suspect that your AHI number is real, and you probably still aren't feeling your best with the number that high. I was stuck around 20 until a pressure adjustment, and that adjustment was only 0.5 cm. As you're only 8 days into this I encourage you to wait for the software and ensure you have eliminated virtually all the large leaks (black bars at the top of the graph) before you consider adjusting pressure. (Again, I will admit I adjusted before the software arrived, in desperation. So an alternative is to try out a 0.5 adjustment--if you feel way better as what happened with me, wonderful! If the same or worse, put it back until you have your software.) In general, people on the forum recommend observing your reactions for about a week before considering doing more adjusting (except if you're worse--then put it back!)

Regarding leaks, I am a mouth exhaler in my sleep also, although I don't typically breath in through my mouth. This can compromise therapy. In the absence of software you can somewhat judge how severe your mouth-breathing is by the degree of dry mouth. I eliminated large leaks and improved my profile overall by using a chin strap that's actually an eye mask and a strip of tape just over the center of my mouth. Chin strap "mileage" seems to vary widely. The best advice I've received is to go with the kind that has a wide strip going under/across the chin and ensure the pull is "up". If the jaw is pulled backward it can contribute to closing the airway. My little eye mask chin fix has narrow straps that don't interfere with the fit of the Swift LT, something else you'll want to watch for. I do encourage you to try some sort of chin strap along with any taping you do if you're the confirmed mouth-breather you say you are. 100% taping is not for me, but you can find lots of taping discussions and descriptions in this forum.

Understand that my leak profile is still not ideal--but my AHI is now hovering around 2. If you cannot get your AHI/daytime alertness in good shape by taping and strapping you might have no alternative other than a full face mask. I might try a FFM someday, but I love the nasal pillow, sleep comfortably with it, and I feel pretty great during the day. So for now the above is a solution for me. I understand perfectly why you want to stay with the nasal pillow. You'll just have to watch your progress.

Given that our experiences are awfully similar, I hope this post helps.

[DoninOrlando]

Thank you all for your replies so far. All are very helpful.

Katie, I was comparing both. Thanks for pointing out the difference.

Chester, I have been looking at the Liberty. I have a standard FF that I do not like at all. It feels warm on my face when I exhale, and although a small one, still too claustrophobic. The biggest hesitation I Have, (other than price), is the mixed reviews it seems to get on Cpap.com. How long have you had yours and how long did it take to make it work?

Pugsy, Thank you for all your help and info. I was thinking my leak rate was terrible. Thanks for the clarification. I did reset the machine after 7 days. The 7 day averages I gave above were after the first 7 days so are true averages. The figures for last night are one night figures, as I reset the machine yesterday, and plan to continue until I get the card reader, which is on order.

Scarlet, Thank you for your comments. It is always nice to hear someone with similar experiences that ended up being successful. Since I am still making small improvements, I will wait to increae the pressure. I will assume the doctor had reason to start at 10, although I did have a split night and slept very little in both sessions. I have tried a chin strap and cannot stand it. I am hoping tape will help as I think it is more air slipping out of my mouth than my jaw dropping and opening wide. I have not had a sore throat or very dry mouth in several days so I think my jaw is up but mouth opening slightly. I do still feel tired but am also taking Zyrtec which causes some of that.

I have stopped getting up frequently to use the bathroom. I never knew it was related until reading this board. I went from an average of 2-4 times nightly, to 0, within a few days. I guess that means something is working better.

Any other tricks for clearing congestion? That is one of my biggest issues. I have tried and still use a netti pot, vicks inhaler, vicks near the air intake on machine, and heated humidifier. I also use a prescription steriod spray. The only thing that works consistently is Afrin spray. But you are not supposed to use that every night. Does anyone use it nightly? Any other suggestions other than what I use. I have always had night time congestion.

[Pugsy]

I have stopped getting up frequently to use the bathroom. I never knew it was related until reading this board. I went from an average of 2-4 times nightly, to 0, within a few days. I guess that means something is working better.

Any other tricks for clearing congestion? That is one of my biggest issues. I have tried and still use a netti pot, vicks inhaler, vicks near the air intake on machine, and heated humidifier. I also use a prescription steriod spray. The only thing that works consistently is Afrin spray. But you are not supposed to use that every night. Does anyone use it nightly? Any other suggestions other than what I use. I have always had night time congestion.

The nightly frequent treks to the bathroom was my one consistent "miracle" when they ceased. So yes, it is working, we just want to feel like we did 20 years ago over night and it just is such a long shot... I am so envious of those that report the night and day difference they see immediately.

Regarding Afrin..... Nasal congestion. If you have been using the Afrin for any length of time at all I bet you are having some Afrin rebound. Gotta cut out the Afrin and that is so hard to do. Believe me, I have been there and done that. Every time I ever had a bad cold I ended up with Afrin addiction. It is so hard to get off of the stuff and so easy to become dependent on it.

Pick a nostril and allow yourself to use the Afrin on it (but only tiny, tiny amount) but not the other nostril which you can use the other stuff on. Takes about a week to break the rebound cycle. Once that nostril is clear then stop the Afrin in the other nostril. You may even need to take some decongestant if your health permits. Sudafed or something similar. Anything to help break that cycle. What happens is that your nasal mucosa is so used to the Afrin reducing the swelling that it swells up more waiting for the "fix"..with Afrin. Bad, bad habit but so very common. Your body actually has sort of a physical addiction to the Afrin.

[chester11]

As for the mixed reviews with the Liberty, I think you'll find that with any mask. Everyone's face is different. And what works for one person will not work for another. I looked at those reviews also, and I noticed some of the negative ones might of had the mask on too tight. Because they complained about it leaving marks on their face. It's suppose to be able to kind of float on your face. I've had mine a little over a week now, and I'm very happy with it. When I was using a full face mask, I was about ready to quit using the cpap. Now I'm using it every night. What helped me with my fitting was watching the fitting and cleaning video at http://www.resmed.com/us/products/mirag ... s&sec=true. It did take about 3 days before I got it where I was completely comfortable, with very few leaks. The Liberty really does not feel like a full face mask. But then it's not a nasal mask either. And you do not have to tape your mouth! I hope this is helpful for you. Good luck in finding the right mask. I know how hard, and how important that is.

[Muse-Inc]

...been looking at the Liberty

Also look at the RespCare Hybrid, comes with 3 sizes of oral cushions, 3 sizes of pillows that sit at 2 different heights so getting a good fit is pretty easy. It has fewer parts to wash too! I love mine. I started wearing this mask 7/24, took me a few days to be comfortable with fit and size as I used to wear the Respironics OptiLife pillow mask which is about as minimal as a mask gets

...Any other tricks for clearing congestion?

Astepro, one of the new azelastine anithistamine sprays, works well for me -- 30 yrs allergies and sinus probs. Also use Nasonex as needed and do nasal irrigation (Grossam gadget).

...Does anyone use it nightly?

Yrs ago my ENT had me using 1 spray each nostril at bedtime of the 12-hr moisturizing not-drip formulas (like Publix generic the best), then I developed apnea. Along with that, after 19 months I started having cardiac effects from the generic Afrin and had to stop using it. I also have to sleep propped up on layers of pillows to reduce congestion...no fun for side sleeping.