Replies to This Discussion

Permalink Reply by Banyon on September 30, 2010 at 1:51pm

Unfortunately Provigi/Nuvigil doesn't come with an OFF switch for use at bedtime.

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Permalink Reply by Mary Z on September 30, 2010 at 4:45pm

Luckily for me, I take the Nuvigil early enough in the day that it does not impact my bedtime
A lot of good advice here for all of us. Banyon, I have already gotten my ENT appointment moved up a month by checking for cancelations and I'll keep calling. As far as surgery from listening to Dr. Park and others on the forum that have gone that route I would like to address my chronic nasal congestion, maybe look at my tonsils, the most extreme would be MMA. I don't think I want to mess with my tongue, uvula, or palate Meds have been looked at and though some of them may be a factor, my apnea has not worsened with the use of mild painkillers, while my sleep is totally disrupted by severe leg pain at night. The techs say they can dowload ai and ahi data from the machine. I am not going to push for a differerent machine until I see the new doc on Oct. 12. I understand how important that data is and I miss being able to check my numbers daily. All in all I'm satisfied right now that I'm on the right track. Oh and losing about 30 lbs is a must
Thanks to Toronto CPAPguy for your thorough examination of the situation and helful advice.





Banyon said:

Unfortunately Provigi/Nuvigil doesn't come with an OFF switch for use at bedtime.

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Permalink Reply by Renee on October 1, 2010 at 4:48pm

Hello Mary ~

I have found that if I have 6-1/2 hours sleep or less that my OSA results / numbers are always quite high. This happens even though it seems like I am sleeping as usual during the shortened hours. So, while I do keep a record of the numbers from those nights, I don't consider them in anyway a reliable indicator of the night's sleep, trending, etc.

Best,
Renee
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Mary Z said:

jeff , from 7/31 my AI numbers vary widely- 0.7, 2.8, 16.9 (yes), 9.2, 5.0, 1.3, 8.1, 2.0, 8.9. Some nights I don't sleep well and find myself finally getting off to sleep about the time my roommate gets up for work (3:00am). Those nights I know the numbers will be bad, perhaps because the AI is bad I don't sleep well (feel like I'm not sleeping, but it must be a very light sleep). I'll just wait and let the interventions I've done work, and keep losing weight until I see the doc on the 24th. Still I've never had any AI numbers as low as some of them so I am glad for even sporadic progress. Thanks for your insight. I'd be thrilled with and AHI consistenly below 5.
Mary Z.

j n k said:

Benadryl messes with my numbers, too. I no longer take it. With PAP therapy, fortunately, I don't need it.

Mary, what is your AI? If you are consistently below one, your range may basically

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Permalink Reply by Renee on October 1, 2010 at 4:56pm

Hello Mary ~

I concur with Jeff. I have a ResMed S-8 and I have been advised by a sleep doc and others that the HI is so arbitrary and unreliable that I should not give it consideration; however, I still continue to track my HI to watch for a "trend" change. It is good to see Jeff's mention that the RedMed S-9 is better in terms of tracking HI.

Good luck with your doctors and better, consistent xPAP results.

Best,
Renee
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j n k said:

On that machine, I'd be happier with an AHI of 20 and an AI below 2.0 than I would be an AHI of 5.0 and an AI of 3.0. I would completely ignore AHI and HI on that machine, myself, and only trend with the AI. That is because that machine counts many things as an estimated hypopnea, so the hypopnea number is arbitrary and is less significant, clinically speaking. That is not so of an S9 and not so of Respironics machines. But it so, in my opinion, of S8 machines.



Mary Z said:

jeff , from 7/31 my AI numbers vary widely- 0.7, 2.8, 16.9 (yes), 9.2, 5.0, 1.3, 8.1, 2.0, 8.9. Some nights I don't sleep well and find myself finally getting off to sleep about the time my roommate gets up for work (3:00am). Those nights I know the numbers will be bad, perhaps because the AI is bad I don't sleep well (feel like I'm not sleeping, but it must be a very light sleep). I'll just wait and let the interventions I've done work, and keep losing weight until I see the doc on the 24th. Still I've never had any AI numbers as low as some of them so I am glad for even sporadic progress. Thanks for your insight. I'd be thrilled with and AHI consistenly below 5.
Mary Z.

j n k said:

Benadryl messes with my numbers, too. I no longer take it. With PAP therapy, fortunately, I don't need it.

Mary, what is your AI? If you are consistently below one, your range may basically

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Permalink Reply by Renee on October 1, 2010 at 6:17pm

Hello again, Mary ~

You sure keep at it! And you MUST have a problem with leakage . . . I don't think there is a mask made to handle the high pressures you are trying to use.

Here are some ideas that I've thought of that might help . . . a tech at one of my sleep studies told me that he has OSA and that he has found a really good solution to a mask moving about and leakage, etc. He uses a FULL head coverage "mask" that covers his entire head. He said that because the full head mask covers his xPAP mask completely that it keeps his xPAP mask in place and that he always has ZERO leakage. And in his case it works out well because since he works nights, the full head coverage blocks out the sun so he sleeps better during the day. I have thought about it but haven't tried it because I thought it would be too "hot" a solution.

And, especially for the FitLife, a possible idea regarding the FitLife leakage and the facial grooves that you mentioned in another post . . . I have a Small FitLife mask and I drew out the dimensions and sent them to Karen Moore at Pad-A-Cheek and she made a full face liner to work with the FitLife. The benefits are that the liner, on its own, helps prevent facial grooves and leakage. And since the liner helps prevent leakage, you can possibly tighten the mask less and, thereby, have another way to prevent facial grooves.

Also, I have some particular difficulties . . . I have some sort of allergic reaction to the material with which the masks that I have tried are made (Quattro, FitLife, FullLife) – so for me a liner is a necessity just to be able to wear a mask – and, I think, the liner would make the mask more comfortable for everyone.

And, I get headaches from the Quattro and FitLife – so I asked Karen to sew a “Forehead Pad” into the FitLife liner. – AND it turns out that the “Forehead Pad” in the liner, not only prevents me from getting headaches, it ALSO STOPPED my major leakage – which is right in the center at the top of the mask!

Also I have a lot of leakage at the uppermost left and right corners of the FitLife (particularly the left). I think I remember that you mentioned in another post that you use elastic to pull the top of the mask tighter and I am doing that too. And in addition to the elastic, I am using an “Anti-Leak Strap” that I purchased from Karen Moore (for the Quattro). I have shortened the Quattro “Anti-Leak Strap” temporarily, simply with 2 safety pins until I figure out the correct length, then I am going to ask Karen for one that is the correct length for my FitLife purposes. I place the “Anti-Leak Strap” straight across the top of the FitLife and then just stretch it around the back of my head above my ears and tighten it up with the Velcro strips. I suppose one could make their own but I REALLY like the soft, yet durable, comfortable, “cool-feeling”, fabric that Karen uses – and the quality of Karen’s work is always so good.

Without the liner and, more importantly, the “Anti-Leak Strap” stretched across the top of the FitLife, I would not be able to wear the FitLife because of TOO much leakage and I am not in anyway near your range - I'm only at 18..

Alas, I also am allergic to the material of the straps and so I use a “strap cover” on the strap that goes around the back, bottom of my mask and – an added benefit – is that the strap cover also seems to lower leakage. I had purchased strap covers from some companies on-line before I discovered Karen Moore, but found that I also had an allergic reaction to the material that the strap covers were made of - so I suggest getting strap covers from Karen because she uses soft, comfortable, natural fabrics. -- ( And, NO, I do not own stock in Karen's company.)

And, lastly, I have found that, the more I get the leakage under control, I can use a lower pressure and yet get better results. Maybe you wouldn’t be able to lower your pressure but, perhaps, you could get better results at your required pressure.

I hope this post was not too all-over-the-place and here’s hoping that some of these ideas will come in handy for you.

Best,
Renee
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Mary Z said:

The latest on this subject is after my last visit to the doc last month he ordered a new machine which goes up to a pressure of 30. He surprised me by getting me out of the office and to the tech to order the new machine so I didn't get to ask him if we should be exploring why the AI will not get into an acceptable range at a pressure of 24. He has proven to be hard to talk to, and I've proven not to be assertive enough to manage to stay in the office long enough to think and ask questions. I made an appointment with another sleep doc for a second opinion and an appointment with an ENT for evaluation (no openings until Dec.). The results from my last sleep test were very vague and from something the folks who unwired me said I'm not sure I was properly wired for testing. There was no mention of numbers in their report, so I think they must have messed up. Considering my whole relationship with this Dr. I think I will pursue the second opinion and a change of sleep docs. His sleep lab has proven to be unprofessional.

The pressure of 30 has proven impossible to maintain due to mask leakage. I took it on myself using what I've learned here and my last prescription to find the highest pressure that my mask can tolerate and adjusting the machine accordingly. I called the tech in the doc's office today to tell him this and he seemed amazed that I would change my own machine settings. I told him it was either change them myself or not use the machine- I was OOT at the time. He called back and said the Doc approved the new settings and the DME would be out to make the changes. I didn't say there was no need for that, figuring they had to cover their butts and make sure I had done things correctly. I was a bit taken aback that in his experience the tech had not encountered anyone with the knowledge and ability to get into the clinical menu to make necessary changes. Had I not been able to do that I would have been without the machine my whole vacation as the mask leaks completely disrupted my sleep. The RT at the dme was going to tell the doctor a pressure of 30 was too high for any mask ( or at least for me with my anatomy and the masks I am able to wear), but I guess the Doc knew best.
One of the worst things is the new machine does not give AI and AHI. I hope they'll be available via software download or the machine is of no use to the doc, or me, in judging results. When the RR rate is 4- *, I know there is some apnea going on. The dme tech had very little experience with this machine and did not know it would not give me needed data. I am going to try to swap it out for a machine that gives the data I need unless I can dowload it (still waiting for a new cable- different configuration from my S8 cable).

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Permalink Reply by Mary Z on October 1, 2010 at 6:39pm

Thanks, Renee. I will contact Pad-A -Cheek. Can you get me more information On the "full head coverage mask"?
Thanks again, Mary Z.


Renee said:

Hello again, Mary ~

You sure keep at it! And you MUST have a problem with leakage . . . I don't think there is a mask made to handle the high pressures you are trying to use.

Here are some ideas that I've thought of that might help . . . a tech at one of my sleep studies told me that he has OSA and that he has found a really good solution to a mask moving about and leakage, etc. He uses a FULL head coverage "mask" that covers his entire head. He said that because the full head mask covers his xPAP mask completely that it keeps his xPAP mask in place and that he always has ZERO leakage.

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Permalink Reply by Renee on October 1, 2010 at 7:14pm

Hello Mary ~

I took a quick look at Google under "full face mask" and "full ski mask". You might find some ideas there.

Best,
Renee
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Mary Z said:

Thanks, Renee. I will contact Pad-A -Cheek. Can you get me more information On the "full head coverage mask"?
Thanks again, Mary Z.


Renee said:

Hello again, Mary ~

You sure keep at it! And you MUST have a problem with leakage . . . I don't think there is a mask made to handle the high pressures you are trying to use.

Here are some ideas that I've thought of that might help . . . a tech at one of my sleep studies told me that he has OSA and that he has found a really good solution to a mask moving about and leakage, etc. He uses a FULL head coverage "mask" that covers his entire head. He said that because the full head mask covers his xPAP mask completely that it keeps his xPAP mask in place and that he always has ZERO leakage.

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Permalink Reply by Banyon on October 1, 2010 at 10:48pm

Are you referring to a "Total Face Mask"? Respironics makes two models: http://www.cpap.com/cpap-masks/total-face-cpap-mask.php . I have the second one and it is not something I would wish on a friend or an enemy. :)

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Permalink Reply by Mary Z on October 2, 2010 at 9:44am

I have the first, the FitLife Total Face Mask, and with more careful adjustment of the cap underneath and the straps was able to get a 0L/M leak rate last night at 27/24.
Yeah, that second mask is a one size fits all- quite a large range, I imagine, Banyon. I haven't read much about it- usually it works or it doesn't- there's no working with it.
Thanks or the advice about googling for the mask, Renee I realized after I read your post that I have just the thing in spandex somewhere with my winter clothes.




Banyon said:

Are you referring to a "Total Face Mask"? Respironics makes two models: http://www.cpap.com/cpap-masks/total-face-cpap-mask.php . I have the second one and it is not something I would wish on a friend or an enemy. :)

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Permalink Reply by Renee on October 2, 2010 at 6:01pm

Hello Banyon ~

What I think the tech meant by a full face mask, or what you might call a full ski mask, is something made out of fabric that completely covers a person's xPAP mask and face and continues at least around the back of the head - if not entirely covering the top of one's head as well. I picture it to be like a winter time face and head ski cap.

Best,
Renee
_____________________________________

Banyon said:

Are you referring to a "Total Face Mask"? Respironics makes two models: http://www.cpap.com/cpap-masks/total-face-cpap-mask.php . I have the second one and it is not something I would wish on a friend or an enemy. :)

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Permalink Reply by Renee on October 2, 2010 at 6:13pm

Hey Mary,

That's good to hear - and spandex - what a great idea because those "masks" seem to often be made of much heavier fabrics - wool, etc. -- And about the 0 leakage - WOW! That is fantastic! I have not been able to accomplish anywhere near that . . . I had one .06 and a few 8, 10, 12 - but more 23, 24. I've been experiementing between 3 masks . . . the FullLife, which I am a great fan of in design - but it has had to be put out of the running. And now I am trying the Quattro - again. If I could conquer the leakage of the FitLife, it would likely surely be the mask for me!

BEST OF CONTINUED GOOD LUCK TO YOU with the FitLife low leakage ! ! !

Renee
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Mary Z said:

I have the first, the FitLife Total Face Mask, and with more careful adjustment of the cap underneath and the straps was able to get a 0L/M leak rate last night at 27/24.
Yeah, that second mask is a one size fits all- quite a large range, I imagine, Banyon. I haven't read much about it- usually it works or it doesn't- there's no working with it.
Thanks or the advice about googling for the mask, Renee I realized after I read your post that I have just the thing in spandex somewhere with my winter clothes.




Banyon said:

Are you referring to a "Total Face Mask"? Respironics makes two models: http://www.cpap.com/cpap-masks/total-face-cpap-mask.php . I have the second one and it is not something I would wish on a friend or an enemy. :)

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Permalink Reply by Rooster on October 2, 2010 at 7:49pm

Renee said:

Hello Banyon ~

What I think the tech meant by a full face mask, or what you might call a full ski mask, is something made out of fabric that completely covers a person's xPAP mask and face and continues at least around the back of the head - if not entirely covering the top of one's head as well. I picture it to be like a winter time face and head ski cap.

Best,
Renee

Good idea. As you can see, I am ready to try it tonight.

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