Feeling Exhausted again and not sure why

[birdygirl38]

I am still using the Mirage FX for her mask. Just replaced it in July, so still pretty new. I also got a wisp and tried it for a week or so, but did not feel comfortable in the headgear around and got bumps/bruises around my nose on the left side so went back to the Mirage.
I reviewed my AHI and leak data. The AHI is usually 1.5 or less but more often is it below 1 with very few events being recorded anymore. 10 or under a night.
My leak data seems to be good with the total leak line under 30 most days. I had a few over that several weeks ago but it has been below 30 for a week.
I don't get right up when I take the mask off, I relax in bed for a while but don't sleep, plan my day and deep breathe. If I wake too early due to nature calling I put the mask back on and do another ramp up. Usually get 6 hours before waking up.
I am back to feeling drowsy all day, with headaches. I am also having neck and shoulder pain and headaches from the back of the neck, but that could be due to a moped accident aggravating old whiplash injuries or vertigo.
Any ideas out there?

[Julie]

Hi, have you tried taping for a few nights just to be sure you're not mouth breathing (and would therefore need a full face mask)? Sometimes leaks, especially large ones from mouth breathing, don't always register (someone else may be able to explain that). It can happen after being on cpap for a while and often doctors just tell you to use a higher pressure, but that can often make things worse. What pressures are you set at? And are you getting enough hours of sleep in general? Have you had your thyroid levels checked?

[birdygirl38]

I am not a mouth breather and don't have equipment to record myself sleeping.
My pressure is at 11 and I am not on BIPAP. So once I ramp up it is constant at 11 according to the graphs though I think it drops slightly to let me breathe out.
The Dr checks my thyroid all the time and never finds anything but I think I need her to check more than one hormone - I believe there are three they should check and most times they only check one. I have fought with weight all my life and really lack a metabolism unless I am exercising/walking over an hour each day.
I do feel better when I take Benadryl at bedtime but I hate to take that every night. I will take it tonight to see if I feel more rested in the morning. Not really congested but do always have post nasal drip going on. Maybe I am just allergic to dust and all the dog hair my shelties are always dropping.
Thanks for the ideas to check on.

[JonathanCPAP]

Hi Julie, I'm curious, isn't the fact that birdygirl's AHI is so low, proof that the problem is not a leak? If she was breathing through her mouth, wouldn't that by definition cause her AHI to shoot right up because she wasn't getting the oxygen she needed?

[Julie]

Not necessarily - I don't know the science of it as well as e.g. Pugsy, but apparently if you lose so much (<all) air out of your mouth, it doesn't even register as a 'leak', but beyond that I'm sorry I can't elaborate... hope someone else does though! I agree that her AHI is ok, so really don't have a useful answer.

[Pugsy]

With the PR System One software reporting a large leak will register as a large leak up to around 110 L/min...above 120 and most likely the machine won't even be able to sense breathing and nothing gets recorded. I have seen reports with massive leaks and it has to be really, really big leak for the machine not to be able to record or sense anything.
If someone is seeing an average Total leak rate of around 30 L/min or less for the night...that's pretty much the expected vent rate plus only minor leak and even if someone had a big leak for half the night they couldn't have a nice low 30 L/min leak rate average with such a massive leak. Large leak territory is somewhere around 80 to 90 L/min for the PR S1 machines depending on model and pressure used.

Mouth breathing leaks that are big enough to impact therapy are real easy to spot on the leak graphs. I know because I have first hand experience with seeing them. Not all mouth breathing means that all the therapy pressure is lost out the mouth. It depends on just how open the mouth is and how much air is escaping. I can yawn and not lose one bit of air pressure. I can open my mouth and not lose one bit of air pressure. I can also mouth breathe a tiny bit through barely open lips and the amount of leak barely make a blip on the leak graph...I have proof of that happening. So mouth breathing is not automatically the end of the world in regards to therapy effectiveness...it all depends on how much for how long and before panic mode is turned on people should evaluate the leak line graphs themselves.

Leaks that are massive enough for the machine to quit sensing anything are going to get a big large leak flag and since the PR S1 machines will actually document how much time in large leak...it's real easy to spot.
If the machine says 0 % time spent in large leak...mouth breathing leaks were not an issue. It's not something that we have to look hard to spot.

So Julie is right..sometimes the leaks are so big that the machine can't register them, or anything else for that matter, but it will register enough warning signs that we can't miss the problem. They are real easy to spot on the reports.

[Julie]

See? I knew she'd know the answer. Not having the same machine or in fact delving too far into my own except to find what I want, all I can do is give hints (and maybe should shut up more often!).

[Pugsy]

Julie I happened to wake up one morning and I was mouth breathing...wasn't wide open mouth breathing but I was mouth breathing nice and slow and low. I figured it was a good time to make sure that I could document the mouth leak on the software reports so I continued to breath through my mouth for a few minutes just so I would be able to spot it on the leak line graph and then I turned the machine off so that the mouth breathing was right at the end of the night.
I fully expected to see a pretty good sized leak show up but it was barely a blip on the leak graph.
I can't seem to get Photobucket to load so that I can go find the example but I saved it because I was so surprised that the leak blip was barely noticeable.
Let me see if I can find that example if I can ever get Photobucket to load up..my internet connection today is typical sucky and images won't load without timing out.
I will post it here when I find it. I have used that example before so I know it is Photobucket somewhere but with all the images I have in there...hard to find since the thumbnails cut off the end of the night and I have to view each image full size to see the end of the night where I circled the known mouth breathing time.

[Julie]

And then maybe I can get it down for the future. I hate feeling so ignorant and am amazed at how you've taken on so much this year, but my own situation is pathetically straightforward and consistent, always has been really, so I've never gone beyond a certain point (plus don't have the S9 AS).

Thanks, J.

[Pugsy]

Julie, I found the report where I knew for sure I was mouth breathing at the end of the night...interesting to note that earlier on in the evening while asleep I have a much bigger time of probable mouth breathing. I think you can spot it easily enough. Pretty much the 3 times with the big plateau leaks are most likely mouth coming open. Not uncommon for me but if you notice that only the 3 to 3:30 leak was really big and it barely got by the 24 L/min line where Resmed says we might start having problems...I slept through all the big leaks and just happened to wake up with the little mouth breathing at the end of the night. Overall while it was not the prettiest of nights in regards to the leak line I really only ventured into large leak territory for about 30 minutes and that was a barely get there leak.
This is why I don't hit the panic button when someone mentions mouth breathing...sometimes there's just no need to panic...at least until we actually look at the reports and see how bad it is/was.

[Julie]

And I know I've been a bore about asking people to try FF masks when they ask why they're not improving, or going backwards - have often wondered why no one's posted a note about it at the top of the forum with others because I do think it probably a factor in many cases, especially since (more recently) everyone starts out on Swift FX nasal, but often ends up on Quattro FF. I realize there are many other issues that contribute to problems, but to me it's seems to be such a basic thing that could be tried out up front (or tape + or - a chinstrap), then if it's not needed ongoing, at least it's available for when they have a cold, etc. But if you think I should stop (don't want to push things like e.g. someone who's really into alternative meds) please say so.

[Pugsy]

. But if you think I should stop (don't want to push things like e.g. someone who's really into alternative meds) please say so.

Nope, don't think you need to stop suggesting FFM.

I think we all tend to recommend things based on our own personal experience. It's sort of human nature.
You have first hand knowledge how mouth breathing can seriously impact therapy and you recommend something that worked for you.
I have first hand knowledge that mouth breathing isn't always the end of the world so I tend to bring up that side of things.

I also understand the need or want to avoid a full face mask at all costs because I have serious issues with neck pain and that lower back strap needed for any full face mask...so I tend to try to come up with ways to avoid FFM if someone doesn't want one because I don't want one either. If I had to wear a full face mask...I would have serious issues being compliant due to neck pain and that lower strap. There aren't many full face masks without a lower strap. I went through all this back early on in therapy when trying to find a full face mask to use when I had a cold...I simply couldn't find one that didn't cause serious neck pain. So I totally understand someone not wanting to use a FFM and I will bend over backwards to try to help them get out of doing so if I can.

Mouth breathing can most certainly have a huge impact on therapy effectiveness and I will be the first one to tell someone that they need to fix it somehow when I see proof that it needs fixing. I just need the proof.
If they can't provide proof....like with a brick machine...then I assume the worst because I have no choice and can't prove it isn't as serious as first thought.

My own personal opinion about leaks...be it mouth leaks or whatever leaks....if it doesn't wake me up and doesn't negatively impact therapy hugely then I really don't care if the leak line isn't perfect and 30 minutes at 1 cm above large leak territory line that I sleep through isn't enough to hugely impact anything IMHO.
But I want verification as to just how bad they might be before I dismiss them...so I want to see the leak graphs and not just the numbers because numbers can mislead a person...especially those 95% numbers if they are elevated.

I didn't/don't want you to change what you offer..not my place to do that and I don't want that place.
What you say is very true and there's a need for it.
I just happened to have a really good example that I knew I could prove that mouth breathing wasn't always the end of the world in terms of losing "all" therapy pressure..so I thought I would share it because anyone reading this thread will understand where we are coming from when we talk about leaks in general and how to evaluate the impact on therapy.
This way people will understand where I am coming from when I say what I say.

[Julie]

So, what are you going to do with your doctorate in all this? Someone should be paying you!

[avi123]

birdygirl38, knowing your age could help in replying. From a study done in 2009, almost 15% of those who are "adequately" treated on CPAPs, have Residual Excessive Sleepiness and feel like you. Excluding Depression, Restless Legs, Heart Problems with Central Sleep Apnea Syndrome, weak lungs respiration, and a few more medical conditions, the prevalence drops to 6%. Younger persons were MORE affected.

So CPAPs are not sure things to cure most Sleep Disorders.

[DoriC]

And I know I've been a bore about asking people to try FF masks when they ask why they're not improving, or going backwards - have often wondered why no one's posted a note about it at the top of the forum with others because I do think it probably a factor in many cases, especially since (more recently) everyone starts out on Swift FX nasal, but often ends up on Quattro FF. I realize there are many other issues that contribute to problems, but to me it's seems to be such a basic thing that could be tried out up front (or tape + or - a chinstrap), then if it's not needed ongoing, at least it's available for when they have a cold, etc. But if you think I should stop (don't want to push things like e.g. someone who's really into alternative meds) please say so.

Julie, I'm in your camp about the FF, especially the UM or Quattro FF. I had so many problems working in the dark trying to adjust Mike to this therapy but the one positive from the beginning was using a FF mask. That suggestion from the DME was the only good one she made! As long as it isn't due for a replacement cushion and he's not having issues with hip pain and restlessness, all I due is slap it on, make a few strap adjustments and good night. I think a lot of problems could be eliminated if they tried a FF. It's too bad they have such a bad reputation.