New guy here with a few questions

[DanJuan]

Hi all,

New guy here and would love to glean some of the collective wisdom I know is here.

I'll give a brief medical history as I think some of it is related to the apnea. I've always been told that I stop breathing at night but never took it seriously. I remember 25 years ago my ex wife would shake me to wake me up so I'd breath. I've had bad anxiety for years where my heart was always pounding very hard. I always woke up covered with sweat during the night. Doc never took any of this seriously but I finally pushed and she put me on SSRI's but they totally wasted me out for over a year so I weaned myself off them (that wasn't much fun) Two years ago a doc found a heart murmur so I had open heart surgery to repair a mitral valve prolapse. I think the apnea was wearing my heart out. A year after that my GF told me I really had to see about the stopping breathing thing so I booked a sleep study. After the study was done I was told I had about 60 episodes an hour and needed the cpap machine. Since then I don't wake up sweating and feel much better and the anxiety is way better so I think that's somehow related. I still get some of it though and the doc tells me it's Generalized Anxiety Disorder but I don't take any meds. I'm wondering if the apnea causes / exascerbates the stress / anxiety dissorder?

I'm in Canada and when I asked my doc about a follow-up sleep study I was told it's not done. Seems kind of stupid to me that it isn't possible to have periodic tests to see how things are going and if new pressures are needed. I've been on cpap for a year now and feeling much better than I used to but still think I should be able to get better results than I get. I've got a Resmed Elite set on 12.0 and I get a leak of .78 l/s with an AI of 0.1, an HI of 7.6 and an AHI of 7.7. I've played with the pressure settings a bit but not much changed.

When I went for the only follow-up visit I took my machine so the doc could read the results and maybe propose some changes. I was told he doesn't read results and only wanted to know if I felt better. To me that is a dumb answer. If you've got two knives sticking out of your back and they take one out you certainly feel better but far from as good as you could feel.


Are these acceptable results or should I be working towards getting the numbers lower? Should I push for another study or even pay for one myself?

TIA

Dan

[klockemy]

I don't have the answer to your question, but I loved your 'two knife' analogy. lol

[DreamStalker]

Welcome DanJuan.

Your AI is very good and your HI is not all that bad but could be improved upon. In general, ResMed machines score HI more agressively than other CPAP machines ... so getting the HI under 3 or 4 would be a good doal to shoot for. To do this you may need to raise pressure ... however, raising pressure will increase the probability for increased leaks (mask or mouth).

What kind of mask do you have?

The first thing to consider regardles is to make sure you have a leak-free mask. Your leak number don't look all that bad but until we know what mask you are using it is difficult to say for certain. Try filling out your profile with equipment and you won't have to answer what kind of mask or machine you use. There are lots of great members here to help you optimize your treatment ... although you don't have to far to go.

[DanJuan]

[riverdreamer]

For a Resmed, if you have the mask selection set correctly for your mask, the leak rate is too high. The acceptable leak rate on a Resmed stops at .40, so your leak rate is almost double what it should. It is possible that it is compromising your therapy, especially since you are still having some symptoms. If you list your mask, people can help you troubleshoot what may be happening. Do you know that some masks require replacement parts at various times? Depending on the mask, that might be one of the first things to consider.

[rested gal]

Welcome to the message board, Dan. It's a good thing your girl friend called your attention to you sleep breathing problem, and you finally did get a sleep study and a machine!

For a Resmed, if you have the mask selection set correctly for your mask, the leak rate is too high. The acceptable leak rate on a Resmed stops at .40, so your leak rate is almost double what it should. It is possible that it is compromising your therapy, especially since you are still having some symptoms.

I agree with riverdreamer. A leak rate of .78 is much too high with a ResMed machine.

If you're using a nasal mask (covers the nose) or a nasal "pillows" mask (two little coneshaped nozzles sitting against the front of the nostril openings) your jaw might be relaxing down too much during sleep, and you might be mouthbreathing at times instead of actually breathing in pressurized air all night. If no mouthbreathing is going on with those kinds of masks, then the mask may be leaking.

If you're using a FF mask (Full Face - covers nose and mouth together to allow getting treatment either route) you may be having too many mask leaks...possibly the mask getting dislodged somewhat at times, or not fitting properly.

When I went for the only follow-up visit I took my machine so the doc could read the results and maybe propose some changes. I was told he doesn't read results and only wanted to know if I felt better. To me that is a dumb answer.

A very dumb answer, indeed! If nothing else, someone at the doctor's office should have checked the "Efficacy" results on your machine and noted the unacceptably high leak rate. Unfortunately most doctors and DMEs don't think about "leak" problems. They're interested only in "are you using the machine" -- not with whether the usage is doing good.

Your usage IS doing you good. Just gotta check out the leak situation, and then maybe you'll do even better.

I'm not a doctor, but I wouldn't think you'd need another study now. Just keep digging into this message board for tips about how to optimize your present therapy.

For example, if the main air hose is tugging a mask out of place when you turn over or move your head, you might want to think about rigging up a hose holder so that you can toss and turn over freely underneath the hose, like a fish on the end of a slack line.

LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

[JoyD.]

I'm in Canada and when I asked my doc about a follow-up sleep study I was told it's not done. Seems kind of stupid to me that it isn't possible to have periodic tests to see how things are going and if new pressures are needed. I've been on cpap for a year now and feeling much better than I used to but still think I should be able to get better results than I get. I've got a Resmed Elite set on 12.0 and I get a leak of .78 l/s with an AI of 0.1, an HI of 7.6 and an AHI of 7.7. I've played with the pressure settings a bit but not much changed.

Hi, DonJuan . . . Welcome to the forum.

Why don't you fill out your profile, especially the equipment section - it's helpful for us to see.

Congratulations for achieving the results you already have compared to how you started out!. . . now it's just about "tweaking". Do you have the software for your machine? It sounds like you might, but if not, I'd strongly recommend obtaining the ResScan Software so you can see what's going on better. You can better identify where you might be having problems and have a better idea of how to "fix" them. Often people post their software data to get other opinions on interpretation.

As for more sleep labs, I'm interested to see what some of the "veterans" on this forum have to say. One thing I'd point out is that a Sleep Lab is just ONE NIGHT and it is in an ABNORMAL SETTING all wired up in an unfamiliar place. Once diagnosed in a sleep lab, and if that showed no Centrals or Complicated Apnea, or other unusual results . . . I'm not sure that another sleep lab would have much to offer that your own monitoring of Software couldn't provide. You can always buy a Oximeter if monitoring your Oxygen levels during the night would alleviate any worries.

I have no doubt that your heart, stress level, and more . . . have been "battered" by your OSA. I had a TIA (mini-stroke), and needed 4 blood pressure meds. prior to getting treated for my OSA. After only 3 months on CPAP, I'm already down to 2 BP meds and I don't worry about strokes since that RISK has dropped since I'm now being treated.

Joy

[Guest]

Thanks for the welcome and the replies so far.

I've filled out more of my profile but didn't see where the equipment section is ... I'd better look again.

I'm using a Swift II mask but it's a year old and seems to be making more noise than it used to so I'm bidding on an LT over on CPAP Auction. I want to get the hose into the middle as I'm a side sleeper and tired of having marks on the hose side of my face. Think that's the best option? I've been browsing the net looking at masks for days now and can't seem to come up with something that looks perfect... probablt no such beast out there, eh.

I tried bumping the pressure up as high as 14 but it did seem to cause more leaks. I'm not sure if I mouth breath but sometimes when I'm half awake I feel my cheeks puff up. To me that means there's a blockage starting. Does that mean the pressure isn't high enough??

So the wisdom seems to be that my major problem is leaking and if that is corrected my numbers will come down?

I've looked at the hybrid mask that has pillows and covers the mouth, think that's something to try?

Dan

[Dot]

Hi Everyone. Been a long time since I have posted, but was surprised when the fellow from Canada said his Dr told him they do not do second testing. I have used the c-flex with heated humidifier and full mask for about 5 years now and my Dr sent me back a few months ago for another sleep test. He told me it had been a couple years since my last test and felt it was time to re-do it since I was still only sleeping 3 or 4, hours with a rare night that might hit 5 to 5 1/2 hours of sleep. When I first started with the machine I only was sleeping 2 or 3 hours a night. Went years this way. So do sleep a little longer with the machine, but the new test showed nothing different, so pressure was left where it was originally set when I first started using it. The place where I receive the new masks etc. from told me I should take my machine in once a year to have it tested. When I asked the local place that they said should check it for me, I was told they do not check a machine unless it has stopped working. Next time the place called me to see if i needed anything new, I told them what happened and they were surprised. My Dr told me to take everything- the machine and all, with me when I went for the new sleep test and ask them to check it. Again was told they also do not check them.
Can hear some thunder in the distance, so if it gets closer I will go off my computer. When my Dr asked me if I use the machine every night, I told him except for a couple times when we were having a thunderstorm. He asked me why that made a difference and I told him if the power goes off I would be hooked up to a machine with no power to operate it. He said he had never thought of that. Funny , right?

[Froro]

I just started cpap two months ago but have a follow up sleep lab a year from my anniversary. OHIP will cover two sleep studies a year and more if you go through the paperwork and your doctor feels it's medically necessary.

Others can give more advice on the other issues but that's one little tidbit I can offer.

[riverdreamer]

I like the Swift LT, myself. The pillows need to be replaced, and they are softer than the ones on the Swift II, so seem to break down faster. My insurance covers two sets of replacement pillows per month, so I don't mind, but it is a consideration. I think they last longer than two weeks, but just be aware that you will want extras. The LT is much more comfortable, with the attachment in the center, than the II. There are lots of tweaks for the Swift masks. Rested Gal has a link on her posts that will take you to all kinds of good info on how to get things working.

Be aware that your leaks may be coming from the mouth, as well. Some people on this board tape their mouth to avoid using a full face mask. The Hybrid mask you are considering seems to be a popular option for many people to fix mouth leaking without tape. I'm considering it, myself, as an option for when I have too much congestion to breathe through my nose.

The leaks can lower the effectiveness of your therapy, and they can also cause the reported AHI to be inaccurate. It is a possibility your are having more apneas or hypopneas than is reported, due to the leaks. So fixing that issue is the first step. If you get leaks under control, then you can consider other options if your AHI is still too high, or you aren't feeling better.

The Resmed machines give pretty good data on the LCD, but you get more detail if you spring for the software and a card reader or USB connector. With the software, you can find out how the leaks relate to when you have breathing events, and also how it relates to pressure.

To list your equipment, go into the User Control Panel at the top left of the page, just under Search. There is a section on equipment. If you list it in text, it is easiest for people to read, as many of the machine and mask pictures look alike.

There is also lots of good info under the yellow lightbulb on the top center called "Our Wisdom." Even though you have been using CPAP for a while, I am betting there is info there you could learn from. Keep trying, and keep asking questions. There are lots of answers here.

[DanJuan]

OK, I got my equipment section filled in.

How do I know if I am mouth breathing? Just try the tape and see if things are better? I also need the humidifier set to max to keep my mouth moist enough and even that isn't so effective.

I also should mention that I had my nose broken when I was a kid and it's a bit crooked and ones side seems smaller... deviated septum? Also seem to have chronic congestion where one side or the other is always blocked.

Great to hear that OHIP will cover another study if I need it, thanks for the heads up.

The LT goes through two sets of pillows a month I'm a self employed general contractor and don't have insurance so that could get expensive. I've been using the same ones on the Swift II for a year now.

Looks like I'll shop around for the software for the Resmed. Any ideas where to find a good price?

Off to find the light bulb to do some reading .........

[ozij]

How do I know if I am mouth breathing?

Like this:

I also need the humidifier set to max to keep my mouth moist enough and even that isn't so effective.

That's mouth breathing alright!

[robertmarilyn]

The LT goes through two sets of pillows a month I'm a self employed general contractor and don't have insurance so that could get expensive. I've been using the same ones on the Swift II for a year now.

When you purchase your next Swift LT, it should come with three sizes of pillows. You can probably find two folks on this forum to trade the two sizes you don't use for the size you do. That is what I was able to do with the two pillows I don't use. (Of course, you have to be sure the DME really does give you the three pillows like they are supposed to do).

mar

[DanJuan]

How do I know if I am mouth breathing?

Like this:

I also need the humidifier set to max to keep my mouth moist enough and even that isn't so effective.

That's mouth breathing alright!

Ah, so that's how Guess that means I'm off to Home Depot tomorrow for some blue tape.