CPAP standing or falling by state of nose *ADVICE NEEDED!!!*

[andy5805]

Hi
my experience has been very black and white with CPAP and I seek earnest help on the black bits. I use an F&P Icon which is set to 7 minimum and then on auto, then a Quattro full face mask. I use nanonex nose spray nightly , take anti-histamine for allergy, I am fit and healthy do lots of sport to try and build myself up to face sleep deprivation with more strength, heart rate sub 60 bpm, and my main issue has always been getting to sleep - if too many events (loud snorting gasping for air) wake me up, I'm a write off for the night as I panic I will never sleep and then it is all over. I've seen it get light before as event after event has jolted me out of sleep and tormented me and then had to go to work. I am a side sleeper, this causes me issue with the mask. I've tried to sleep on my back like the mask wants me to, I can't, I just go wide open mouth, dry out totally even on max setting, and get events the second I lose consciousness. So I sleep on my side, with varying success. I have humidity 4, which can melt lanolin and rain out, I try for as little lanolin as I can if not none, I try and prevent rain out.

I am aware people have colds 6 times a year, I try and stay so healthy to bring this down. I work in an office including with unhealthy people, I try and avoid the things they bring in as a box of tissues for them is complete misery for me. I don't need a full blown cold to be a disaster, I just need a slight infection, like today, I don't feel ill, but I feel tired because for me CPAP is black and white

it's great when I am 100% well. but the SECOND I get any infection or blocked nose, it is all over, I should not even be going to work - but I have no choice, I can't be off as much as that. I also cannot avoid disease. What's next, living in a plastic bubble? in despair, what are my options?




WHEN IT IS GOOD




I sleep great, I'm so rested, I have one snort arousal frequently zero, I drop off to sleep, I don't wake up once, no toilet breaks, up for work with so much energy, this to me has been the miracle of CPAP. Last year I could not understand how I held down one job now I've had stages this year when I've comfortably had TWO.




WHEN IT IS BAD , MASK OR NOT, IT SIMPLY DOES NOT WORK




my nose is either partially blocked or fully blocked, I don't know why this is, especially when like now I'm not ill and suffering from this waking up all the time as if I didn't have a mask on- when I am wearing the mask

I know why it happens - nose won't take air up it, preassure is increased by the machine, but the nose being the local bottleneck to airflow throws air out sideways by being blocked this flares the mask at the bridge of my nose, leading to air to hiss out and batter my eye and wake me up. So I tighten and tighten, and injure my nose sometimes, and it just spirals downwards

I also know that no matter how much nanonex I put up there, it won't change it

so I try and do what the mask wants and sleep on my back because my blocked nose won't let me sleep on my side because of leaks. big mistake. jaw then rolls right open and the events are the second I pass out, the throat closes up and even with top humidity I wake up in horror almost having to massage my neck violently with my hands to unstick the tissue that was stuck together asphyxiating me , trying to kill me. This is with the mask ON, and it is frightening when it happens

so back sleeping is completely irresponsible and counterproductive, I should never do it again.

so what happens is I side sleep and get to the stage where I am so exhausted the eye is being battered by the hissing and escaped air and yet I lose consciousness anyway, I sleep for a couple of hours, the moment my body has had enough sleep to begin panicking again and fighting those jets of air, I am awake again, with a start




my question is this - what to FFM users do when their noses do not work? how do I stop this because I have job I must continue and not just stop attending just because my nose does not work




WHAT I HAVE FOUND SO FAR




- don't sleep on back, no matter what, it is dangerous and stupid.

- turn up humidity to max when like this , this seems to work a little on the nose, and even if it doesn't , if the nose has decided mouth breathing is the only way, doing this will definitely not harm the mouth.






any help from people who have been there and got the t-shirt, truly appreciated.

[library lady]

Have you tried using a chin strap to keep your jaw from dropping? I'm so sorry you're having such trouble! It's a pita. I don't use a chin strap, but I'm thinking that you can probably still open your lips to breathe, while still keeping your jaw from dropping. If I'm wrong about this, someone will be along to correct me. Maybe try a different mask?

[Sheffey]

I have no idea what is causing your problems, but here are some suggestions.

- 4, as you know, is a high humidity setting. What climate do you live in? I live in a humid climate and don't use a humidifier, not even during the winter. A humidity setting that is too high causes nasal congestion in some people. Try lower settings.

- Make sure there is not a HVAC vent blowing on the CPAP machine.

- You should be able to sleep on your sides with that mask. Check your hose management - make sure the hose is not pulling on the mask.

- Sleep on the edge of the pillow so that the mask is not touching the pillow. Notice how the straps pull on the mask and sleep in a position that prevents leaks.

- Ultimately, if you continue to have bad congestion, see a good ENT/Allergist who will scope your nose and test you for allergies.

[OboeVet]

Thankfully, I don't have difficulties getting to or staying asleep. But I came across a phone app that might help you:

"CBT-i Coach is a mobile phone application for Veterans, Service Members, and others who are participating in Cognitive Behavioral Therapy for Insomnia. It is intended to augment face-to-face care with a healthcare professional. You can also use it on its own, but it is not intended to replace therapy for those who need it."

You don't need to be a Veteran to use it. You may want to log your sugar and caffiene intake, and make sure you are not working out prior to sleep. Herbal teas and boring (e.g. relaxing) music may help.

Don

[49er]

Hi Andy5805,

Agree with the advice to see an ENT to be tested for allergies and also to see if you have nasal obstruction issues that are preventing success with cpap.

49er

Hi
my experience has been very black and white with CPAP and I seek earnest help on the black bits. I use an F&P Icon which is set to 7 minimum and then on auto, then a Quattro full face mask. I use nanonex nose spray nightly , take anti-histamine for allergy, I am fit and healthy do lots of sport to try and build myself up to face sleep deprivation with more strength, heart rate sub 60 bpm, and my main issue has always been getting to sleep - if too many events (loud snorting gasping for air) wake me up, I'm a write off for the night as I panic I will never sleep and then it is all over. I've seen it get light before as event after event has jolted me out of sleep and tormented me and then had to go to work. I am a side sleeper, this causes me issue with the mask. I've tried to sleep on my back like the mask wants me to, I can't, I just go wide open mouth, dry out totally even on max setting, and get events the second I lose consciousness. So I sleep on my side, with varying success. I have humidity 4, which can melt lanolin and rain out, I try for as little lanolin as I can if not none, I try and prevent rain out.

I am aware people have colds 6 times a year, I try and stay so healthy to bring this down. I work in an office including with unhealthy people, I try and avoid the things they bring in as a box of tissues for them is complete misery for me. I don't need a full blown cold to be a disaster, I just need a slight infection, like today, I don't feel ill, but I feel tired because for me CPAP is black and white

it's great when I am 100% well. but the SECOND I get any infection or blocked nose, it is all over, I should not even be going to work - but I have no choice, I can't be off as much as that. I also cannot avoid disease. What's next, living in a plastic bubble? in despair, what are my options?




WHEN IT IS GOOD




I sleep great, I'm so rested, I have one snort arousal frequently zero, I drop off to sleep, I don't wake up once, no toilet breaks, up for work with so much energy, this to me has been the miracle of CPAP. Last year I could not understand how I held down one job now I've had stages this year when I've comfortably had TWO.




WHEN IT IS BAD , MASK OR NOT, IT SIMPLY DOES NOT WORK




my nose is either partially blocked or fully blocked, I don't know why this is, especially when like now I'm not ill and suffering from this waking up all the time as if I didn't have a mask on- when I am wearing the mask

I know why it happens - nose won't take air up it, preassure is increased by the machine, but the nose being the local bottleneck to airflow throws air out sideways by being blocked this flares the mask at the bridge of my nose, leading to air to hiss out and batter my eye and wake me up. So I tighten and tighten, and injure my nose sometimes, and it just spirals downwards

I also know that no matter how much nanonex I put up there, it won't change it

so I try and do what the mask wants and sleep on my back because my blocked nose won't let me sleep on my side because of leaks. big mistake. jaw then rolls right open and the events are the second I pass out, the throat closes up and even with top humidity I wake up in horror almost having to massage my neck violently with my hands to unstick the tissue that was stuck together asphyxiating me , trying to kill me. This is with the mask ON, and it is frightening when it happens

so back sleeping is completely irresponsible and counterproductive, I should never do it again.

so what happens is I side sleep and get to the stage where I am so exhausted the eye is being battered by the hissing and escaped air and yet I lose consciousness anyway, I sleep for a couple of hours, the moment my body has had enough sleep to begin panicking again and fighting those jets of air, I am awake again, with a start




my question is this - what to FFM users do when their noses do not work? how do I stop this because I have job I must continue and not just stop attending just because my nose does not work




WHAT I HAVE FOUND SO FAR




- don't sleep on back, no matter what, it is dangerous and stupid.

- turn up humidity to max when like this , this seems to work a little on the nose, and even if it doesn't , if the nose has decided mouth breathing is the only way, doing this will definitely not harm the mouth.






any help from people who have been there and got the t-shirt, truly appreciated.

[andy5805]

I have no idea what is causing your problems, but here are some suggestions.

- 4, as you know, is a high humidity setting. What climate do you live in? I live in a humid climate and don't use a humidifier, not even during the winter. A humidity setting that is too high causes nasal congestion in some people. Try lower settings.

- Make sure there is not a HVAC vent blowing on the CPAP machine.

- You should be able to sleep on your sides with that mask. Check your hose management - make sure the hose is not pulling on the mask.

- Sleep on the edge of the pillow so that the mask is not touching the pillow. Notice how the straps pull on the mask and sleep in a position that prevents leaks.

- Ultimately, if you continue to have bad congestion, see a good ENT/Allergist who will scope your nose and test you for allergies.

I'm interested in your first point - I'm in UK, and I know it's getting more humid as we head to summer, 4 was my winter setting you'd think I'd knock it down but instead I'm putting it up - but this may be because the horse has bolted and I'm slamming the door - i.e. I'm providing for the needs of my mouth BECAUSE my nose has been clogged up by the very same thing in the first place. That said, - one mans joy is another mans sorrow - some love it more humid some love it less - but as I've had rubbish sleep the last few nights, and as I have nothing to lose, and the logic points towards you being right (i.e. it's not winter, the air should hold more anyway) i'll give it a go on maybe 2 or 3 tonight, because I don't work until Monday

thanks

and thanks also other posters.

[andy5805]

Have you tried using a chin strap to keep your jaw from dropping? I'm so sorry you're having such trouble! It's a pita. I don't use a chin strap, but I'm thinking that you can probably still open your lips to breathe, while still keeping your jaw from dropping. If I'm wrong about this, someone will be along to correct me. Maybe try a different mask?

it's a good idea and I have tried it - trouble is the mask - if you move it up it leaks so you need a chin strap to keep the chin up and the mask down, gravity and antigravity - who would have thought simple sleep was such a technical job and general pain in the butt

[BlackSpinner]

Have you tried using a chin strap to keep your jaw from dropping? I'm so sorry you're having such trouble! It's a pita. I don't use a chin strap, but I'm thinking that you can probably still open your lips to breathe, while still keeping your jaw from dropping. If I'm wrong about this, someone will be along to correct me. Maybe try a different mask?

it's a good idea and I have tried it - trouble is the mask - if you move it up it leaks so you need a chin strap to keep the chin up and the mask down, gravity and antigravity - who would have thought simple sleep was such a technical job and general pain in the butt

Some people simply attach a strap from one strap to the other of the mask under the chin.
This is also why I prefer the resp care hybrid, it has a flap to keep the chin up.

[robysue]

my question is this - what to FFM users do when their noses do not work?

They open their mouth and breathe through it.

I'm not being snarky here: The whole point of a FFM is that it covers the mouth as well as the nose. And the purpose is so that you can open the mouth and breathe through it without losing therapeutic pressure.

A question that I have for you: Is the daytime congestion as bad as the night time congestion when the PAPing is bad? Are you unable to breathe through your nose during the daytime too?

[Sheffey]

I'm providing for the (humidity) needs of my mouth

The CPAP humidifier is designed to moisturize nasal passages. There is not a humidifier made that can provide adequate moisture to an open mouth. Look for a gel mouth moisturizer. Here we have Biotene Gel which provides reasonable relief. http://www.google.com/search?client=saf ... 8&oe=UTF-8

[chunkyfrog]

Biotene has a new formula, which many have found to be ineffective, as well as a having a new, very unpleasant flavor.
I would not recommend it, but you could suck on a xylitol-containing lozenge, or chew xylitol gum.
I take a 10 mg loratadine every night, which controls most of my allergies, and keeps me down to 1 or 2 colds a year.
For me, most of my "colds" arose from my allergies.
Some use a saline nasal rinse in the evening to clean out the gunk that causes reactions.

[Bama Rambler]

I am a mouth breather, FFM user and a dedicated side sleeper.
I have been through a good number of masks and have found a few that somewhat work.
The first one I got was the Quattro Mirage and it worked pretty well except for the fact that it rides up on my face during the night and that causes leaks in my eyes.
Then I found the Flexifit 431. It has a chin ledge and that completely stops the riding up on the face, however it still leaks a little under the chin at times when I turn from side to side.
I am currently using the F&P Simplus and it doesn't ride up and my leak line is almost completely straight.
Out of all the masks I've tried I'd recommend those three with the Simplus being my favorite.

I can sleep on my side using any of the above masks and I'm a very active sleeper.

One of the best things I've found for the dry mouth is to drink a large glass of water just before bed. I can tell a big difference on the days when I drink the water and when I don't.

[kteague]

Just wondering about you having events as soon as you doze off. Maybe you would benefit from your pressure being higher from the very beginning. Treatment that either starts with a ramp or from a too-low start of a pressure range can be the issue. I had that problem, and changing my starting pressure made it much easier for me to initiate and maintain sleep.

[Sir NoddinOff]

it's a good idea and I have tried it - trouble is the mask - if you move it up it leaks so you need a chin strap to keep the chin up and the mask down, gravity and antigravity - who would have thought simple sleep was such a technical job and general pain in the butt

Your particular mask lends itself to this particular solution. I'm showing a bike cuff strap, about a foot long, looped around my lower straps but an old piece of head gear cut into a that length will also work:



This is a lot more comfortable than a full-on chinstrap and besides chinstraps often fail to prevent mask ride-up... unless they are over the mask straps and that's super uncomfortable in my book, just like having one's head in a vice. Nobody else has said it but at some point you're going to have to take a hard look at your anti-histamines and see if they are causing more problems than they are solving. Probably not what you want to hear but somebody had to suggest it.

[Kennerly]

Well .... "I feel your pain." Nasal congestion derailed my progress big time and working through it has been a PITA. The good news is that you have a number of options.

As I understand your situation: when nasal passages are clear and a ffm is not required you can side sleep and things are hunky dory, is that right? If so ...

- With your settings on 7/auto how high does your pressure actually go?

- How does a very low humidity setting effect your nasal passages?

- Along the lines of RobySue's question, how much do you know about your allergies? Have you worked with an allergist? It's likely there is a more effective control method than your current one ...

There is an approach that could address several of your issues all at once: sleeping in a recliner. It solves the FFM/side sleeping problem (keeps you "face up") it can help clear nasal congestion and it may reduce your pressure needs.

Reducing your pressure needs would make leak control easier and could help with the "supine = events" problem. Reclining reduces nasal congestion by diverting the drainage down your throat. In my own case it allows me to nose breathe on a lot more nights than before. (Often starting out mouth breathing and then switching over as things clear.)

My sleep doc recommended that I try the recliner for my congestion problem, the pressure drop was a surprise (to me). YMMV