Ok, I've done everything I know to do and I am discouraged!

Hi, sister. First, I must commend you for sticking with therapy through all the difficulties you've had!!! I know that it's been a long haul for you.

You mentioned that you are renting a machine. You have the S8 Elite II listed in your profile, but you said that you're using an Auto machine, so I know that's not correct. Which specific brand and model are you using right now??? You may want to change your profile so you can get more specific help.

You just stated that your leak rate is reported in L/s. If you are renting a ResMed machine, then it sounds like you're using the S8 AutoSet, as that machine's screen reports the leak rate in liters per second (L/s). Anything above 0.4 L/s on that machine is bad!

If you are using the S9 AutoSet, that machine reports the leak rate on the machine screen in liters per minute (L/m). A leak rate above 24 L/m on that machine is a problem.

If you are using a Respironics machine, which I suspect you may be, the leak rate is reported differently, as it doesn't subtract the mask's "intended leak rate" before reporting, as the ResMed machines do. But, regardless of which machine you're using, if your leak rate is really "80's to over 100," as you stated, then you have a LARGE leak problem! You are not going to be able to use a nasal or nasal pillows mask. I realize that you can't afford to buy a new mask right now, but that does need to be a top priority. With leak rates like that, your machine cannot compensate for the machine pressure being lost through your mouth, and your reported AHI probably isn't being reported accurately either because of the high leak rate.

I would suggest that you try the Quattro FX when you can, as many people say it is much more comfortable. In the meantime, if you still have any of the full face masks that you have tried in the past, I suggest that you work on fitting it properly (not too tight!). Maybe you need to consider a different bed pillow too. It was already mentioned, but it's quite possible that you weren't given the correct mask size. There are some youtube videos that may help with fitting tips, depending on which mask(s) you have. Also, Pad A Cheek has mask liners, an anti-leak strap, nose bridge protectors, and other products that may help the full-face mask to fit better and more comfortably. You will need to bandage the sore spot on your nose to prevent further injury (until it heals) if you do decide to give one of the full-face masks another try.

Tell us which machine you are currently using. If it's the S9 machine, you can purchase an SD card at any electronics stores for just a few bucks and use that to get the data into ResScan. (It says in your profile that you have ResScan 3.7.) Others here can advise you regarding Respironics software and data card. It would be ideal if you could post software screenshots so we can help you figure out what may be happening. Patterns often emerge that may indicate more leaks, or other problems, during various sleep stages (like REM). You can only see that on the software graphs. It's great to have the results numbers off the machine screen, but seeing what's actually happening throughout the night is MUCH more helpful! It is entirely possible that you sleep right through the leaks. I did. And other times I would hear "odd" sounds but be too groggy to realize what I was hearing.

I suspect that your therapy is ineffective in large part due to the massive leaks. Do work on getting that problem solved, and everything else may just fall into place! If pressure adjustments are needed, it will be much easier to determine once the leak problem is tackled.

Best wishes, and please do keep us posted on your progress.

DreamOn wrote:Hi, sister. First, I must commend you for sticking with therapy through all the difficulties you've had!!! I know that it's been a long haul for you.

You mentioned that you are renting a machine. You have the S8 Elite II listed in your profile, but you said that you're using an Auto machine, so I know that's not correct. Which specific brand and model are you using right now??? You may want to change your profile so you can get more specific help.

You just stated that your leak rate is reported in L/s. If you are renting a ResMed machine, then it sounds like you're using the S8 AutoSet, as that machine's screen reports the leak rate in liters per second (L/s). Anything above 0.4 L/s on that machine is bad!

If you are using the S9 AutoSet, that machine reports the leak rate on the machine screen in liters per minute (L/m). A leak rate above 24 L/m on that machine is a problem.

If you are using a Respironics machine, which I suspect you may be, the leak rate is reported differently, as it doesn't subtract the mask's "intended leak rate" before reporting, as the ResMed machines do. But, regardless of which machine you're using, if your leak rate is really "80's to over 100," as you stated, then you have a LARGE leak problem! You are not going to be able to use a nasal or nasal pillows mask. I realize that you can't afford to buy a new mask right now, but that does need to be a top priority. With leak rates like that, your machine cannot compensate for the machine pressure being lost through your mouth, and your reported AHI probably isn't being reported accurately either because of the high leak rate.

I would suggest that you try the Quattro FX when you can, as many people say it is much more comfortable. In the meantime, if you still have any of the full face masks that you have tried in the past, I suggest that you work on fitting it properly (not too tight!). Maybe you need to consider a different bed pillow too. It was already mentioned, but it's quite possible that you weren't given the correct mask size. There are some youtube videos that may help with fitting tips, depending on which mask(s) you have. Also, Pad A Cheek has mask liners, an anti-leak strap, nose bridge protectors, and other products that may help the full-face mask to fit better and more comfortably. You will need to bandage the sore spot on your nose to prevent further injury (until it heals) if you do decide to give one of the full-face masks another try.

Tell us which machine you are currently using. If it's the S9 machine, you can purchase an SD card at any electronics stores for just a few bucks and use that to get the data into ResScan. (It says in your profile that you have ResScan 3.7.) Others here can advise you regarding Respironics software and data card. It would be ideal if you could post software screenshots so we can help you figure out what may be happening. Patterns often emerge that may indicate more leaks, or other problems, during various sleep stages (like REM). You can only see that on the software graphs. It's great to have the results numbers off the machine screen, but seeing what's actually happening throughout the night is MUCH more helpful! It is entirely possible that you sleep right through the leaks. I did. And other times I would hear "odd" sounds but be too groggy to realize what I was hearing.

I suspect that your therapy is ineffective in large part due to the massive leaks. Do work on getting that problem solved, and everything else may just fall into place! If pressure adjustments are needed, it will be much easier to determine once the leak problem is tackled.

Best wishes, and please do keep us posted on your progress.

Hi Dreamon,
Thanks so much for your response,when I read the first line I had to cry a little.I have really tried so hard for so long.
I was using the resmed s8 cpap until about 2 months ago,had used it for 1 year this last time.
I was very fortunate to find a very nice DME who let me use an autopap(free of charge) that he usually rents on a monthly basis when my Dr. prescribed autopap.Pressure is 8-12.
It is a Resmed autoset spirit,an older machine,but has been very much more comfortable for me to use than straight cpap.
I have read that pt's who have had the UPPP surgery shouldn't use an autopap but c pap wasn't working for me either.
I have recently changed to a memory foam pillow which seems to be working good.
I just went and checked my data again,leaks for the week are 0.94Ls and for the month 0.98L/s.
I do not lose any air through the mouth I don't think,I have it closed off so well with 2" tape and a very wide chinstrap.
I am thinking maybe I shouldn't be using an autopap?
My husband is just now starting on an autopap,first night was march 1st and he is doing great!
They gave him the Swift Fx at the sleep center and he loves it.AHI of 0.1 with no leaks.
I am so happy for him!
GOD BLESS YOU!

P.S. I couldn't find the Resmed autoset spirit in the equipment profile.

Sister, you may have mentioned it but how did the Dr arrive at the 8-12 auto setting? It would seem that may not be the best pressure setting or auto may not be working for you as per Den's post. At any rate the proper mask is first and foremost. Have you been measured and fitted by the DME lying down with the machine on? Our DME just "eyeballed" my husband at first and decided that he needed a Large UltraMirageFF when he was a perfect Medium. Have you experimented with the forehead support position? That makes a big difference. We also kept the straps too tight at first to ensure a good seal and it really messed up his nose and leak rate. We used some Padacheeks for awhile until we really got the straps properly adjusted. We also invested in a few different bed pillows until we found the best one, a pretty expensive experiment but necessary I have to say. I can also attest to the fact that before we found the right bed pillow, best pressure setting and mask adjustment, I could stand by my husband's bedside while the mask was hissing and farting with large leaks all over the place and he stayed sound asleep! Please don't be discouraged and definitely don't give up, you have a lot of good people here to help you be successful. Blessings.

Sister, I suggest that you add a note in the "Additional Comments" section of your profile, stating that you use the Resmed (S7 or S8?) Autoset Spirit and remove the S8 Elite II from your equipment list. It may make it easier for others when they're trying to help.

Your leak rate of 0.94 L/s is more than twice the "maximum acceptable leak rate" of 0.4 L/s!!! That's a major problem that needs to be solved before anything else. All that good therapy air is not able to do its job keeping your airway open when it's escaping from your nose and/or mouth.

Since your leak rate is so very high, one thing to check carefully is the possibility that your hose may have tiny holes and may be leaking air before it even gets to your mask. When you're using the nasal pillows, it's possible that they are being dislodged during the night and you're sleeping through that. You could try some of the lab rat fixes here if you think your mask needs to be stabilized: viewtopic.php?t=15104. I do suggest that you consider some of the "comfort" items that I mentioned from Pad A Cheek (or elsewhere), or you could make your own. When I first used nasal and full-face masks, I did need padding and/or bandaids on the bridge of my nose. Hopefully, you'll be able to finally make one of your existing full-face masks work or find a new one that seals well, with little leaking. I've tried a lot of masks myself. Some I had given up on and then tried again months later and they were much better. As mentioned already, a lot has to do with getting one that's the right size and then not overtightening straps and the nose piece.

Do you have copies of your sleep study reports? If not, you really need to get those and study them (complete reports--for both diagnosis and titration studies)! You need to understand whether you may have any problem with central apneas, which a regular CPAP or APAP machine cannot treat. It's possible too that the pressure itself could be causing central apneas. These will record as apneas on your machine, but the Spirit will not break it down between obstructive apneas and central apneas, as some of the newer machines do (like my S9 Autoset). Perhaps you should consider another sleep study if it's been a while?

You said that your AHI is usually 18 or more. What is your AI (apnea index), if you can get that information from your machine's screen?

As far as whether APAP is appropriate due to your past surgery, I have no idea. Perhaps someone here has more knowledge about that. Really, though, I suspect that a large part of your problem is the massive leaks. The air is escaping from somewhere -- hose, mouth, mask seal, and/or nose -- and not keeping your air passage open. Plus, your machine is probably not reporting AHI accurately with leaks like that.

I wish you much success with this. Good to read that your husband's doing well with his therapy, and I hope you'll be saying the same soon!

The "somewhere" is her mouth.......she states that in her first post......

sister wrote:I had UPPP surgery in 2007 and I have a hard time keeping the air from escaping from my mouth.
I use tape,a wide chin strap and sometimes polident to no avail.

Den

Wulfman wrote:The "somewhere" is her mouth.......she states that in her first post......

sister wrote:I had UPPP surgery in 2007 and I have a hard time keeping the air from escaping from my mouth.
I use tape,a wide chin strap and sometimes polident to no avail.

Hi, Den! I had read that. But then, in her last post, Sister stated:

sister wrote:I do not lose any air through the mouth I don't think,I have it closed off so well with 2" tape and a very wide chinstrap.

Those statements seem to conflict, so I wanted to cover all the bases!

She had said that the leaks don't wake her up, so I'm not sure if she does know where they're coming from:

sister wrote:I honestly do not notice and discomfort with the nasal pillows or any leaks at all. I go to sleep with the Comfortlite 2 very well,Only sleep 4 or 5 hours but I check my data as soon as I wake up and the leaks are always high.
I feel absolutely no leaks during the night or when I wake up.

Her leak rates are so bad that I thought I should mention the possibility that leaks may be occurring from several places, including possibly holes in the hose. I think you and I both agree that Sister needs to be using a full-face mask, and I hope she can make that work.

Hi Sister

I can send you a couple of FF masks that I probably have no future use for.

I have to dig them out, but they will probably be a Quattro Ultra and a F & P.

if you are interested I will airmail them to you if you can PM me with a PO address to send them to, or your DME, or suchlike,

If they don't work you can always send them back sea mail. If they do, you can keep them.

cheers

Mars

Hi,
I don't mean to confuse anyone,maybe I'm not making much sense right now but I am so very tired.
I don't know of any leaks at all,(to my knowledge),I have none going to sleep or when I wake up that I can find and the machine is always showing excellent fit.
I can't wait to check the data in the morning but the leaks are always high.
The machine that I have is a Resmed AutoSet Spirit,however I don't know if it's an S7 or S8 I can't find anything else on it,just Resmed AutoSet Spirit.
It is an older machine but it seems to work very well.
I don't know why my DR. prescribed an auto pressure of 8-12,I was on c-pap pressure of 9.

Now the thing that I don't understand is most of my AHI is always HI"S.
Last night for example,my AHI was 17.3 but AI was 0.0 and HI was 17.3 Leaks were 1.34L/s
night before last AHI was 18.1, AI was 0.2, HI was 17.9 Leaks were 0.94 L/s
I have read that Resmed always reports high HI's,but I don't understand my leaks.
As far as I knew,I slept from 11pm to 4am and thought I had no problems until I woke up and looked at the machine data.
Thanks so much!!

sister wrote:Now the thing that I don't understand is most of my AHI is always HI"S.
Last night for example,my AHI was 17.3 but AI was 0.0 and HI was 17.3 Leaks were 1.34L/s
night before last AHI was 18.1, AI was 0.2, HI was 17.9 Leaks were 0.94 L/s

The leaks are significant. They are coming from somewhere when you are asleep. Either mouth or mask fit.
Might check the hose to make sure there are no holes in it. Even change hoses...

The older Resmed auto machines algorithm tended to score higher Hyponea events for some people because at pressures above 10 cm it wouldn't raise unless certain criteria for events were met. Most often the HI might be 6-9 though. Not 17 HI.

Given the size of the leak reported we cannot really put much faith in what is being scored. The leak is large enough to impair therapy and affect event scoring.

An auto range of 8-12 would be a common enough range for someone titrated to 9 cm. You might do better on straight CPAP at 9 but until you get a handle on the leaks you can't really judge the most effective pressure.

Leaks over 0.4 L/sec with the ResMed 7 or 8 machine is the line where ResMed says all bets are off and they say that therapy can be compromised and data reported may not be accurate.
Your average leak rate shown is well over twice that number. The data reported may not even be accurate.

Sorry, let me add that I'm pretty sure that leaks are not coming from my hose, I change it very often because I have severe allergies.
Just to make sure I changed it for a new one last night.
I just cannot find any leaks and this has been my problem for over a year now.

Do you guys think that I need another sleep study? I don't mind doing that if it might help.
I don't know how often Medicare and BCBS pays for a study,I had one in February 2010.
Thanks!

There are obviously major leaks coming from somewhere (mouth, nose, mask seals, hose) and you need to figure out where, so you can eliminate that problem. The leaks are definitely affecting your therapy.

As I said before, with major leaks like you're having, the machine is probably not reporting your AHI accurately. Those numbers will make more sense once your leaks are down to acceptable levels. Then you can consider any pressure adjustments that may be needed.

Once your nose has healed a bit, you do need to work with the full-face masks until you find one that will work for you. Start with the masks that you already have. Try making various adjustments to the straps and experiment with the nose bridge adjustment dial (if your mask has that). View the mask-fitting videos at youtube.com for some tips. Remember that you don't want to wear the mask too tight. And use bandaids and/or fabric barriers (padacheek.com) to protect your nose until you find a good fit. Make final adjustments while in the supine position in bed. I suggest that you experiment with all this during the day. I know that when I'm ready to go to sleep I am more impatient, and I don't feel like fiddling with the mask adjustments.

Please let us know how you're doing.

Added: I see that you have changed hoses. Make sure that all connections aren't leaking too. And be sure to check the small mask hose, if yours has one.

sister,

It's a real shame that you can't seem to get at the leak line because of the need for a proprietary data card and reader needed in the older Resmed S7 and S8 machines. I bet looking at the leak line would be illuminating in figuring out what's going on with the leaks.

I'm assuming those ridiculously high leak rates are 95% leak rates---can anybody confirm that the leak data on the S7's and S8's is 95% leak rate data?

If those on board leak rates are 95% leak rates, it's just possible that much of the night---including when you're awake---that the leaks are acceptably low, but as some point you've got a few really bad leaks that are bumping that 95% leak number up so high. That might explain why you have no memory of leaks when you're awake. You said you slept with the machine about 5 hours last night with a 95% leak rate of 1.34 L/sec (which is 80.4 L/min) which is about three times as large as the Red line in ResScan. But since if that 1.34 L/sec figure is a 95% leak rate, then all we know for sure is that you were leaking AT or ABOVE that rate for at least (5 hours of sleep)*(3 minutes/hour) = 15 minutes of guaranteed really high leaking. What was going on during the remaining 4:45 hours you slept is not clear. And that's a very relevant question, but it can only be reliably answered by looking at the leak rate graph, which requires both the data card and a reader for the data card.

How about switching machines with husband for one night? He has the S9 Autoset? Then you could use the data card and the software to see the leak line... Could also check his results at the same time.

Hi Sister

I had problems and still have with reflux which produced hypopneas. I didn't know that if I take less than 4 hours before going to bed:

- Food with high content of grease (cheese, bacon, a McDonalds hamberger , fatty meat, etc)
- Food hard to digest like shrimps, too much fiber or too big portion
- Even cereal with milk, of soy milk just before going to bed

I will for sure have a terrible night, my HI will be high and I have been passing a long time at the maximum pressure. The morning I will feel very bad I assure you. If I respect the diet and hours to eat I will be most of the night at low pressure, I will feel rested and I will have a really low HI.

What the Dr explained to me was that I was having acid reflux in the night, when that happens the throat closes to protect the lungs to receive the acid coming from the stomach and then you make an hypopnea. Then the machine sees you have made an hypopnea and it raises up the pressure a bit more. These same pressure makes you to have another reflux and the cycle starts again and the pressures increases, again and again etc etc. Amazing and hard to believe to me when I hear that.

My pressure was set at 7 - 14 at that time. The Dr said to check what I was eating and he changed the high limit to 12 and the lower to 8. This produced an difference the same first night, my HI went down dramatically. After a couple of weeks I lowered the high to 11 and now my AHI is always under 1 and the 90% pressure is 9 or even lower (8.5) every day I respect the time of supper and the food. For a reason I don't know it seems that the high pressure pushes the acid from the stomach up to mu throat.

All this to say that maybe you have a problem with acid reflux. I had NO IDEA AT ALL that I was having acid reflex, I need to say that very often I had a bad taste in the mouth the morning and some times I woke up in the night coughing and shocking and needed to drink some water, today I realize it was the acid on my throat. Who knows maybe you can take a look at that because it sounds very extrange to me that you have only problems with the HI. Hope this help you.

Be blessed sister

Rosie

Thanks Rosie,
I do have acid reflux but not the kind that affects you the way most peoples do.Mine causes chest pain,dr. says the muscles contract and cause pain. I take 40 mg of nexium once a day for it and i'm fine.
I don't think it would be what I eat because I am on a low cholesterol diet and don't eat much except fruits and vegetables. I try not to eat anything after supper.
There is some reason I have so many HI's though,I'd sure like to know why.
thanks so much for all your caring.
GOD BLESS YOU!