Replies to This Discussion

Permalink Reply by sleepycarol on July 12, 2010 at 1:36pm

It kind of sounds like you are frustrated with the process. Many many people have had to work through their issues one step at a time, and at times take one step forward and two backwards. In the grand scheme of things four months is not that long of time.

As far as your obstructions go, your doctor is your best guidance of why. If that doctor happens to be a general primary care doctor, they may not know the answers you are seeking. Have you tried a specialist? One that specializes in sleep medicine?

I bet there is a reason why you have OSA (I am assuming it is OSA and not centrals that you are experiencing). A forum such as this one will be unable to tell you about your specific case as we do not have all the data on you. Like has been explained by Banyon it maybe an enlarged tongue, narrow jaw, excess tissue in the throat, etc.

As far as your cheeks puffing out, the air pressure going in is to keep your throat open while you sleep. It acts as a splint. What happens to a balloon when you fill it? It expands. No different than having the air from your machine entering your nasal/oral cavities to some extent. It has to find the balance that will keep your airway open, while escaping through the vents/etc. Many times, I have to yawn/blow out to equalize things when I first mask up and I have been doing this for nearly three years.

If the humidifier was part of the problem last night why not adjust it then instead of waiting for tonight? I make adjustments in the night as needed. For me I find that using a humidifier in the summer makes things worse and do not use it, even in passover mode. I live in the midwest and so typically we have high humidity already and even with the air conditioner going I find I don't need it.

As far as the mask feeling heavy one night over another, that is a mind thing. I know on different occassions I am more sensitive/aware of things around me. It isn't that "the thing" has gotten any different it is just the way I perceive things. I have back trouble and find at times I am conflicted over our mattress. It is like a love/hate relationship. Yet, I know it is my thinking that is making me feel that our bed is more uncomfortable some nights than others, depending up on my physical body aches and pains and my mind.

Have you thought about a nasal pillow mask or one that just covers your nose? Have you tried a chin strap/taping/other solutions to keeping your mouth closed? I find that a full face mask is not as comfortable after using the nasal pillow masks. You may have to try different ones out to find a perfect fit.

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Permalink Reply by Judy on July 12, 2010 at 4:14pm

I have to start at square one. Did you have an in-lab overnight sleep evaluation study? And then an in-lab overnight CPAP titration study?

If so, did you have a consultation w/the sleep doctor who dictated the results of those two in-lab overnight studies? Or did he just send the results and his recommendations to your referring doctor?

Were you given a copy of the dictated results (1-2 pages each) AND the full scored data summary reports w/condensed graphs (5+ pages each) from both studies? Did you ask for them? If not, now is the time to do so. Why wait? They are part of your medical records and as such you have a LEGAL RIGHT to them under HIPAA assuming you are in the USA.

As has been asked earlier what is the exact brand and model CPAP you are using? Do you know what your pressure setting is? If not, why? Ask. It is your legal right to know.

It is entirely possible that your pressure setting is too high. Or it may be that you are just one who needs to start out at a lower than ideal pressure for you and then gradually build up to your needed pressure.

I never had ANY luck getting that darn thin outer cushion cover on the Mirage Quattro to quit slicing into the skin at the bridge of my nose. The Mirage Quattro (nasal cushion style) wasn't much better in that respect.

I liked the old Respironics Simplicity simple nasal cushion. Its lightweight, doesn't reach to the bridge of the nose and doesn't have that thin outer cushion cover. Unfortunately, while I didn't open my mouth I still had too high a leak rate due to "the lip flutters" (air escaping gently thru my lips).

I've had good luck w/the ProBasics Zzz-Mask full face mask. For a full face mask it is very lightweight and it doesn't have that thin outer cover to slice into my facial skin.

I'm not a big fan of nasal pillows and I HATED the original Swift w/its asinine side hose attachment. However, I really rather like the Swift LT w/the center hose attachment and I'm hearing lots of good things about the Swift FX except the nasal pillows aren't very durable and don't last long for some.

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Permalink Reply by RChatty on July 12, 2010 at 7:35pm

Back to the original question, You create the seal with your tounge. You simply put your tounge forward to your front teeth and then suck all the saliva out of your mouth. Keep slurping until it forms a seal. You may need to do this a couple of times through the night at first, until you get it to where it will stay all night.

cheryl said:

how does the tongue seal off the mouth exactly?

RChatty said:

If you have a swamp cooler in your home, that air has to have somewhere to get out, and if a door does not get latched, it will open the door to get out. If you pump pressure into your nose, it needs somewhere to go, and if you don't have your mouth sealed off, it will escape that way.

So, the cause is, your tounge is not sealing your mouth off well enough.

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Permalink Reply by Matt on July 12, 2010 at 9:02pm

Cheryl, just some thoughts...

When my cheeks puff out like that, it means my tongue has dropped from the roof of my mouth, and my mouth is opening, or fixing to.

I do wear a full face mask, and it has not made mouth breathing any more tolerable. No matter the humidity level, my mouth and throat get too dry and painful. Too much humidity makes my nose plug up.

You say the mask feels "heavy" on your face. I had the same problem, till I got a hose hangar. The hose was actually weighing down the mask to my face.

Head and neck position has a great impact on my therapy, also. Because of my medical condition (quadriplegic), I lay on my back exclusively. This shoves my chin to my chest, closing the airway. I haven't figured out a good way to address this yet.

Just some thoughts that may be relevant. All the best.

Matt

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Permalink Reply by cheryl on July 13, 2010 at 12:37am

I have a resmed escape II cpap and my pressure is 8. I have seen the report from the sleep lab (the doctor). I have asked what the cause of this OSA is, and so far, I dont have the enlarged tongue, etc, as mentioned in your reply and Banyon's. And yes, I am extremely frustrated. Nothing has ever ruined my life so much as trying to get this to work. I mean that. The last 4 months has been very difficult and it seems no matter what I try, something always happens to mess up the night's sleep. I have tried all sorts of masks and because my face just doesn't fit them well (it's thin), I even tried the nasal pillow type (opti-life) and loved it. But because of the air filling in my mouth and releasing thru the lips, that ended that. I tried every remedy for that including even taping my mouth-and every chin strap I could find. Nothing solved that problem and I was forced to go back to the quattro, after trying many of the available masks at my med supply. They all seem to be too heavy and dig in. I didn't think to adjust my humidifier last nite, because I was just awakened by being too hot at 4am. . I live in Reno and the dryness and the hot nites have been pretty extreme lately, so I upped the humidifier before going to sleep, thinking it would help. I am new to this, and I did adjust the humidifier, after thinking of it-but after I got up. so tonite will tell.



I div>I have to start at square one. Did you have an in-lab overnight sleep evaluation study? And then an in-lab overnight CPAP titration study?

If so, did you have a consultation w/the sleep doctor who dictated the results of those two in-lab overnight studies? Or did he just send the results and his recommendations to your referring doctor?

Were you given a copy of the dictated results (1-2 pages each) AND the full scored data summary reports w/condensed graphs (5+ pages each) from both studies? Did you ask for them? If not, now is the time to do so. Why wait? They are part of your medical records and as such you have a LEGAL RIGHT to them under HIPAA assuming you are in the USA.

As has been asked earlier what is the exact brand and model CPAP you are using? Do you know what your pressure setting is? If not, why? Ask. It is your legal right to know.

It is entirely possible that your pressure setting is too high. Or it may be that you are just one who needs to start out at a lower than ideal pressure for you and then gradually build up to your needed pressure.

I never had ANY luck getting that darn thin outer cushion cover on the Mirage Quattro to quit slicing into the skin at the bridge of my nose. The Mirage Quattro (nasal cushion style) wasn't much better in that respect.

I liked the old Respironics Simplicity simple nasal cushion. Its lightweight, doesn't reach to the bridge of the nose and doesn't have that thin outer cushion cover. Unfortunately, while I didn't open my mouth I still had too high a leak rate due to "the lip flutters" (air escaping gently thru my lips).

I've had good luck w/the ProBasics Zzz-Mask full face mask. For a full face mask it is very lightweight and it doesn't have that thin outer cover to slice into my facial skin.

I'm not a big fan of nasal pillows and I HATED the original Swift w/its asinine side hose attachment. However, I really rather like the Swift LT w/the center hose attachment and I'm hearing lots of good things about the Swift FX except the nasal pillows aren't very durable and don't last long for some.

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Permalink Reply by cheryl on July 13, 2010 at 10:19am

Hi Matt, thanks for writing. And you are correct about that hose weighing down.Not only that, but I have a 12 pound tabby/main coon big tubby cat who when is hungry, starts to look for things to chew one, including the control plastic thing on upper part of my quattro mask. And then theres the hose, thank goodness for the hose sleeve. I will look into your thoughts on this and see if I can get something to hold that thing back and up. I used a new product I ordered online last nite called rem-zzz's. A cloth that goes between the mask and the skin. I also turned down my humidifier, and other than the daily morning headache I still get, I believe I slept thru the nite and perhaps, quite good. So the cloth stopped the digging in from the mask, and I will see how it goes tonite. My next sleep lab-is tomorrow nite, and I really wanted to be in place with a mask for that. This cloth thing may do the trick.

Matt said:

Cheryl, just some thoughts...

When my cheeks puff out like that, it means my tongue has dropped from the roof of my mouth, and my mouth is opening, or fixing to.

I do wear a full face mask, and it has not made mouth breathing any more tolerable. No matter the humidity level, my mouth and throat get too dry and painful. Too much humidity makes my nose plug up.

You say the mask feels "heavy" on your face. I had the same problem, till I got a hose hangar. The hose was actually weighing down the mask to my face.

Head and neck position has a great impact on my therapy, also. Because of my medical condition (quadriplegic), I lay on my back exclusively. This shoves my chin to my chest, closing the airway. I haven't figured out a good way to address this yet.

Just some thoughts that may be relevant. All the best.

Matt

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Permalink Reply by sleepycarol on July 13, 2010 at 10:41am

First of all your Resmed Escape doesn't provide any useful data at all. None, zip, nada -- except compliance. It would be to your benefit to get a data capable machine. One that provides you with your leak rate, apneas, etc. This would allow you AND your doctor to be more in charge of your therapy instead of being in the dark. An apap would be even better. It maybe that you are still having events, especially in light of the fact that you have morning headaches (which could be from the mask or from low oxygen levels in the night). At least ask if your doctor would order an overnight SPo2. That would help determine if your oxygen levels are dropping during the night.

For myself, the DMEs here offer a very limited selection of masks. The only nasal pillow mask they offer is the Optilife, along with a couple of full face masks and a couple of nasal masks. None of their masks are my mask of choice. It took awhile for me to find the perfect mask. In order to do so, I traded, borrowed, bought. As you know masks are very expensive, especially through the brick and mortar DMEs. I purchased masks from cpapauction at a reasonable cost to save money. It was only after several months did I find the mask I love.

It is no fun when the mask hurts that is for sure. When you are uncomfortable it is unlikely you are going to get any quality sleep. Have you tried your sleep clinic to see if they have some masks they would be willing to let you try? Do you know any others users, besides forum members, that maybe able to lend you masks to try?

Have you tried a hose management system? That would take some of the pressure off the mask by routing the hose. For myself I use a cup hook and a stretchy headband to hold it up so it isn't as cumbersome. The headband has enough stretch to allow me to toss and turn without any trouble. There are some systems you can purchase if you want to go that route.

Your pressure isn't all that great at 8. Doesn't mean that it doesn't feel like a hurricane, just that in the grand scheme of things it isn't very high. I wonder if the pressure actually needs to be higher due to you having events that are closing your airway? A data capable machine would help you figure this out.

I really wish you luck and don't mean to be critical of what you are feeling. Your feelings are normal at this stage and especially where you are at right now, still sleep deprived and anxious. It isn't any fun when you have tried and tried and still can't seem to get it right. Keep posting others will have additional help hopefully.

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Permalink Reply by cheryl on July 13, 2010 at 11:20am

I know carol, I see all the complaints people have about the masks, and the whole cpap thing and I know it is quite normal to be experiencing so many problems. I am getting a sleep lab tomorrow nite, can you recommend what type of cpap I should try and get? My doc is doing maybe an autopap or bipap titration 1/2 nite tomorrow nite at the sleep lab. I need to know a brand name of something I can ask for. Also, the pressure, according to the original titration report, suggested I could go down to a 7 or even 6. THey tested those for only a short while, but it did stop the apnea as well as the 8, which is what they seemed to have studied and then recommended. I dont think going higher is a good idea for me. I've screwed with the controls and actually tried it at a 10 and my throat and lungs felt awful the entire next day. I think I better stick with the sleep doctors recommendation. Let me know what cpap I could ask about if you don't mind...

sleepycarol said:

First of all your Resmed Escape doesn't provide any useful data at all. None, zip, nada -- except compliance. It would be to your benefit to get a data capable machine. One that provides you with your leak rate, apneas, etc. This would allow you AND your doctor to be more in charge of your therapy instead of being in the dark. An apap would be even better. It maybe that you are still having events, especially in light of the fact that you have morning headaches (which could be from the mask or from low oxygen levels in the night). At least ask if your doctor would order an overnight SPo2. That would help determine if your oxygen levels are dropping during the night.

For myself, the DMEs here offer a very limited selection of masks. The only nasal pillow mask they offer is the Optilife, along with a couple of full face masks and a couple of nasal masks. None of their masks are my mask of choice. It took awhile for me to find the perfect mask. In order to do so, I traded, borrowed, bought. As you know masks are very expensive, especially through the brick and mortar DMEs. I purchased masks from cpapauction at a reasonable cost to save money. It was only after several months did I find the mask I love.

It is no fun when the mask hurts that is for sure. When you are uncomfortable it is unlikely you are going to get any quality sleep. Have you tried your sleep clinic to see if they have some masks they would be willing to let you try? Do you know any others users, besides forum members, that maybe able to lend you masks to try?

Have you tried a hose management system? That would take some of the pressure off the mask by routing the hose. For myself I use a cup hook and a stretchy headband to hold it up so it isn't as cumbersome. The headband has enough stretch to allow me to toss and turn without any trouble. There are some systems you can purchase if you want to go that route.

Your pressure isn't all that great at 8. Doesn't mean that it doesn't feel like a hurricane, just that in the grand scheme of things it isn't very high. I wonder if the pressure actually needs to be higher due to you having events that are closing your airway? A data capable machine would help you figure this out.

I really wish you luck and don't mean to be critical of what you are feeling. Your feelings are normal at this stage and especially where you are at right now, still sleep deprived and anxious. It isn't any fun when you have tried and tried and still can't seem to get it right. Keep posting others will have additional help hopefully.

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Permalink Reply by Matt on July 15, 2010 at 5:13pm

How did your sleep study go, Cheryl?

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Permalink Reply by Fay Martin on July 19, 2010 at 8:45am

I wear a full face mask, and I have this problem sometimes. With me, it is from air escaping out around the mask. I have to readjust the mask so that it fits tightly on my face with no air leaks, and then it goes back to normal. It usually happens right after I put it on.

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