Help - At wits end with CPAP

[Midnight412]

Help

I have been trying to use CPAP since November 2008 and have yet to be able to get a good night's sleep. I have tried going to a different sleep specialist and feel like I got nowhere. I feel like I have tried everything there is to try (that I know of) but am hoping that someone here might have some new suggestions.

This may be a lot to list and read, but I am hoping to get as much detail as I can to avoid suggestions for things I have already tried.

1. I have a Resmed unit with humidifier.

2. I started with a Mirage Quattro full face mask size large. (I really need XL, but I guess they don't make one)
A. In order to get a good seal, I have to tighten the straps fairly tight. Because the mask presses just below the bottom of my lip, it puts a lot of rearward pressure on my jaw, causing the mandible joints to get sore and wake me in the middle of the night.
B. If I turn the humidifier up to a level where I do not end up with dry nose and mouth during the night, I get condensation inside the mask, which then runs down my face and wakes me up. (I have tried the hose covered and uncovered to try and prevent condensation)
C. If I turn the humidifier down to where I don't get condensation, I end up with dry nose and mouth and wake up very thirsty.

3. I tried nasal pillows also from Resmed.
A. the CPAP setting is 7, so as soon as I go to sleep and my jaw muscles relax, the pressure blows my mouth open and I wake up.
B. I tried using the chin-strap, however the Resmed version always seems to slip off during the night, so I am back to the open mouth problem and wake up.
C. I tried using medical tape to keep my mouth closed, but after a couple days, my skin becomes irritated around my mouth. My primary doctor also told me it is not a good idea to keep taping my mouth closed.
D. It seems in order to prevent leakage, I have to secure the pillows tightly, which ends up making my nose sore during the night, waking me up.

4. I tried using a nasal mask, also from Resmed.
A. The nasal mask gives me pretty much the same problems as the nasal pillows, except that I do not get a sore nose from using it.

5. After going to a new doctor, I only got the suggestion to try a new mask, so I got a Fisher & Paykel FlexiFit432 full face mask in size XL.
A. This mask fits under my chin, so it is much better at keeping my mouth closed through the night, however I have a lot of trouble with it leaking out the sides near my eyes.
B. The mask seals well, but only if my face is fully relaxed. If I move my jaw at all or stir in my sleep, the mask leaks, making a loud squealing sound (like when air is let out of a balloon) which of course wakes me.

After all of this, I am still hopeful that I can figure out something to help me sleep properly. I also tried to fit one of the Phillips Resperonics masks, which an ad said would satisfy 100% of patients 100% of the time… Well.. it didn’t fit me, so I wasn’t satisfied.

Thanks for reading all this. I look forward to a complete well rested sleep.

David

[SleepingUgly]

David,

So you have a mask problem and a rainout problem, right?

For the rainout, some people have succeeded with an Aussie heated hose. That is obviously a cheaper solution than my next suggestion: The Respironics System One Auto machine minimizes rainout.

I don't know which mask will work for you, and I still haven't figured out what mask will work for me. Speaking with Fisher & Paykel, they seem to view the Forma as improved on the 431 and the 432. It also goes under the chin. Perhaps that would work for you. I am going to try that one next.

Which mask do they claim will satisfy 100% of the patients? I'd like to try it to disprove that.

This is not easy.

[BrianR4743]

Aussie heated hose would be an absolute help. Grab a hose cover as well. High humidity, no rainout.

Try using the leg of a tight as an extra strap to support the nasal pillows. Run it underneath the pillows and tie it comfortably on top of your head. After 3 months of dealing with leaks, this simple step took my leak rate to zero. Best suggestion, among many, that I've gained from this forum.

Best of luck and stick with it. You can do it!

[harry33]

it may help to make a chinstrap from pantyhose to stop mouth opening wide in sleep and perhaps breaking air seal of mask

to tape lips, roll lips inward so tape goes on skin above and below lips

[Midnight412]

Thanks for the replies so far.

I haven't tried a heated hose or an actual hose cover yet, but what I have been doing is keeping the CPAP machine about 2 feet from my head on the night stand and then running the hose under the covers with me laying on my chest. I was hoping my body heat would be enough to stop the condensation.

[Muse-Inc]

...I haven't tried...actual hose cover yet...

Try this and see if it helps: cut the arms off an old sweatshirt and thread the hose thru 'em, put elastic bands on each end to keep out cold air. Or, cut the cuffs off several prs of athletic socks and do the same thing. This will insulate the air around the hose so the plastic will stay warm-ish and water vapor won't condense. A real hose cover works the same way.

Might try putting the unit on a step stool next to the bed so any condensation runs back inside the humidifier. Plus, less noise when it's below ear level and less likelihood of accidentally pulling it off the nightstand.

[ozij]

Another vote for the heated hose -- http://www.sleepzone.com.au -- especially important for people whose pressure is low, since they get more condensation (rainout) than other.

No mask has to be worn so tight as to cause pain.

There are many mask companies and mask types. I tried two of ResMed's nasal pillows masks, the Swift I and the Swift LT, neither was any good. On the other hand, the Breeze, made by Puritan Bennett, the Opus, made by Fisher and Paykel, and above all, the Headrest by Aeiomed sereve(d) me very well.

Your leak may also be a result of the way you route your hose.

As for taping, ask your doctor about this paper, written by the physicians who created the ResMed algorithm:

Effect of mouth leak on effectiveness of nasal bilevel ventilatory assistance and sleep architecture
Eur Respir J 1999; 14: 1251-1257
H Teschler, J Stampa, R Ragette, N Konietzko, and M Berthon-Jones

(Teschler and Bethon-Jones are MD's, and central figures in ResMed's research and development of algorithms)

Mouth leak is common during nasal ventilatory assistance, but its effects on ventilatory support and on sleep architecture are unknown. The acute effect of sealing the mouth on sleep architecture and transcutaneous carbon dioxide tension (Ptc,CO2) was tested in 9 patients (7 hypercapnic) on longterm nasal bilevel ventilation with symptomatic mouth leak. Patients slept with nasal bilevel ventilation at their usual settings on two nights in random order. On one night, the mouth was taped closed. Leak was measured with a pneumotachograph.

Results, with added emphasis mine:
Median leak fell from 0.35+/-0.07 (mean +/- SEM) L x s(-1) untaped to 0.06+/-0.03 L x s(-1) taped.
Ptc,CO2 fell in 8/9, including all hypercapnic patients.
Across all patients, the mean Ptc,CO2 fell by 1.02+/-0.28 kPa (7.7+/-2.1 mm Hg) with taping (p = 0.007).
Arousal index fell in every patient.
Mean arousal index fell from 35.0+/-3.0 to 13.9+/-1.2 h(-1) (p<0.0001),
and rapid eye movement (REM) sleep increased from 12.9+/-1.5% to 21.1+/-1.8% sleep time (p = 0.0016).
Slow wave sleep changed inconsistently, from a mean of 13.1+/-1.6% to 19.5+/-2.2% of sleep (p = 0.09).
Sleep latency and efficiency were unchanged.
In four healthy volunteers ventilator-induced awake hypopharyngeal pressure swing during timed bilevel ventilation fell by 35+/-5% L(-1) x s(-1) of voluntary mouth leak (p<0.0001).

Mouth leak reduces effective nasal bilevel ventilatory support, increases transcutaneous carbon dioxide tension, and disrupts sleep architecture

http://erj.ersjournals.com/cgi/reprint/14/6/1251

On the control night, patients slept as usual. On the
treatment night, conditions were identical to the control
night excepting that the mouth was taped closed several
minutes prior to lights out, using several layers of hypoallergenic
medical grade adhesive tape. The last 5 cm of
the tape was folded over to provide a nonadhesive quickrelease
tab, and the patient shown how to use this. On both
nights, great care was taken with mask fitting and headstrap
adjustment, to minimize mask leaks.
The polygraph records were scored manually for sleep

This study clearly demonstrated that when patients are receiving noninvasive
ventilatory support via the nasal airway during
sleep, the occurrence of mouth leak reduces effective ventilation,
induces multiple arousals, and reduces the amount
of REM sleep: the prevention of mouth leaks improved
ventilation, greatly reduced arousals, and markedly increased
REM sleep.

There is an urgent clinical need for a safe and effective
method for preventing mouth leaks during bilevel ventilatory
support. Taping was used in this study in preference to
other ways of sealing the mouth such as a full face mask,
because existing full face masks have higher deadspace,
leak, and discomfort than nosemasks, and arousal data
would be uninterpretable. However, the authors do not at
this stage advocate taping the mouth for indiscriminate
long-term home use, because of the risk of asphyxia in the
presence of nasal obstruction, machine or power failure, or
regurgitation.
Since performing the present study, ~30 carefully chosen
patients, relying on nocturnal support for ventilation but
unable to be satisfactorily treated due to mouth leak, unable
to tolerate a full face mask, highly alert, with no history
of regurgitation, and faced with the alternatives of
tracheotomy or untreated respiratory insufficiency, have
elected to use tape at home for periods of up to 6 months.
The tape is well tolerated and no adverse events have been
observed. In one patient, taping the mouth caused the
Ptc,CO2 to fall acutely from 8.91 kPa to 5.32 kPa (67
mmHg to 40 mmHg), and it was necessary to reduce the
ventilator settings to compensate.

I user 3M's Micropore tape - I react alergically to band-aids and such, but not to the Micropore, also identified as "surgical" and "hypoalergenic".

O.

[sweetdreamzz]

I read somewhere on this site that a cpap user sealed his mouth shut w/ denture cream... That would certainly eliminate tape marks. Good Luck! Sweetdreamz

[rested gal]

Welcome to the board, David. What a well written post you made.
I hope you'll be able to fix some of the problems you're having. You're certainly trying!

I see that others have already offered much of the same advice I would.

So, I'll just add yet another vote for the Aussie heated hose (ozij posted a link for that.)

Her link to the study in which people did apply tape over the mouth to prevent mouth breathing is very interesting.

The "Milk of Magnesia" tip that Birdshell posted a long time ago might help prevent irritation from tape if you decide to go back to taping. I've been taping for over five years now...haven't had to use the Milk of Magnesia myself, but that's helped some other people.
viewtopic.php?p=279021#p279021

Try using the leg of a tight as an extra strap to support the nasal pillows. Run it underneath the pillows and tie it comfortably on top of your head. After 3 months of dealing with leaks, this simple step took my leak rate to zero.

It's amazing how a simple little homemade strap like that can make many an unusably leaky mask work like a charm. Yep.

Using homemade straps -- useful for stablilizing masks other than just the one shown.
Using one or two homemade straps with the Headrest nasal pillows mask.
http://www.tnlc.com/Lara/laura/osa/aura-strap6ways.jpg

DoubleStart Knot How to tie a flat knot behind head when using a homemade strap.
http://www.fieggen.com/shoelace/doublestartknot.htm

David, also check out the Lab Rat Award fixes. You might see a fix which can be applied to one your masks, even if the fix itself was for a mask you don't have:
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

[PurpleSwan3033]

You may just need to perservere a bit longer and that is very hard to do when you are suffering and being deprived of sleep. I did not begin to notice good results until I hit my fourth month which was just a few weeks ago. I had many of the problems you are having, and more. I was sleeping poorly, waking about every 90 minutes to use the bathroom, and, having difficulty getting back to sleep. On top of all that, I had a hostile DME company that ignored me for 3 months to punish me because of a disagreement over a mask where my preference turned out to be correct and their delivery representative's thoughts on this subject was wrong. Sometimes, you have to take control in your best interest. I had to train myself to stop mouth breathing by holding my tongue against the roof on my mouth, against my front teeth. It only took about a week, or so. It seems the mask is a personal preference. You must give you face (and yourself) time to adjust to wearing and sleeping with a mask (and a cpap machine). When you find one that works for you, you will know it! You will notice the proper amount of tension to tighten it, the leaks will stop, and, you will notice that you are growing more-and-more comfortable with it. For the condensation problem, a less expensive alternative to the overpriced $150.00 Aussie heating hose is the $13-$17.00 Zoo Med Repti Heating Cable. Get the 15 watt, 11.5 feet cable online or from a pet store. It has the same 15 watt output as the Aussie hose. Tape the end of it to your cpap hose at the mask end, run it length-wise along the hose and cover it with some kind of snug fitting insulating hose cover. (Be careful not to cross the cable with itself or you might short it out.) If you still get condensation in your mask, just apply some of easy to remove cushiony, waterproof tape (like Walmart's Nexcare brand) to as much of the outside of your mask as you can cover, opposite the water beads. I use a Zoo Med Repti-Temp Rheostat to plug the heating cable into so I can turn it on/off "easily" from my nightstand and control the heat from low-to-medium-to-high. It cost about $22.00 at a pet store. Online shipping rates are hefty but still more affordable than that Aussie hose. Do not be afraid to complain to your DME and even to your insurance company and doctor to get more help with your problems! The DME's are getting paid to help you and, sometimes, you must insist on the help of someone more qualified (like a respiratory therapist) than the person you started out with, who just might be a delivery person. Also, explore this forum and the internet with a fine tooth comb for answers and solutions. There are nuggets of tried-and-proven wisdom spread about but you gotta dig and dig for them. This is what worked for me and I am still not where I want to be! However, I, now, only wake once a night to go to the bathroom, "most nights". I, now, sleep a total of six hours, "most nights". Good luck, perservere, and, God bless.

[rheumrn]

I am having mouth leaks as well. I used my new PAPcap last night and it worked perfectly to hold my receding chin in place and prevent my mouth from opening. Other chin straps pushed my chin further back but the PAPcap holds it straight up. I did have to position the chin strap forward to avoid putting pressure on my throat. Since the cotton material does not stretch like most chin straps, my mouth was held shut. I even used a 1 inch of Micropore tape to seal the center of my lips to stop lip flutter. I was somewhat apprehensive to do this but I had no problems sleeping. My Large Leak rate dropped from 11% to 9% (7 day average) just overnight. I was also able to use a smaller Quattro FF mask (extra small) which helped decrease mask leaks and air into my eyes.

I will try a Liberty hybrid mask this weekend to see if it improves my AHI. It seems that cpap success takes alot of experimentation according to the veteran posters. The posters here really help with their insight for us newbies.

[SleepingUgly]

There is an urgent clinical need for a safe and effective
method for preventing mouth leaks during bilevel ventilatory
support. Taping was used in this study in preference to
other ways of sealing the mouth such as a full face mask,
because existing full face masks have higher deadspace,
leak, and discomfort than nosemasks, and arousal data
would be uninterpretable.

.

What do they mean that arousal data would be uninterpretable? And what is the impact of "deadspace"?