Hello,
I am Mr.NoSleep and I am tired. I have been on a CPAP machine for a bit over 3 months now and still feel like garbage.
I am a married man, 34, with kids. I had my first sleep test in February of this year (2006). The results showed I do not have sleep apnea but do have "Upper Airway Resistance Syndrome." I guess this is a precursor to sleep apnea. My sllep doctor then suggested I have surgery to remove my adnoids and tonsils (which have always been huge). I went to the surgeon and he disagreed, he said removing them now at my age only because they are large would not be a good option. So then I went back to the sleep doctor and he but me on medication and nasal spray, which did not work. Then I went back to the sleep doctor again and in July and I had another sleep test with a CPAP machine this time. I did not sleep well at all that night. Anyways I got a CPAP machine in August and they had it set on 8, I went back for my next appointment some weeks later and told the doc I felt no better. He then upped my machine to a 9 and put me on Provigil 200mg in the morning. I went back some weeks later for my next check up and told him I still did not feel any better. That was about two weeks ago. He then upped my CPAP machine to a 10 and I am on 400 mg daily of Provigil. I still don't feel any better.
I guess my questions are:
- How much air is supposed to leak from the mask? I started out with a medium and I seem to have a narrow face, I had it tight to be leak free but it left some nasty marks on my face. I had the resp. therapist come out a few days ago (she's who increased my machine), I told her about my marks on my face. I got a small mask (same type), and now it leaks a lot, I have a hard time getting it fixed to where it doesn't leak.
- The past few days also I have also had a very, very dry mouth and throat when I would wake up in the wee hours of the night. I do have a heated humidifier for my machine which I use nightly. I think the settings are from 0 - 5, I have it set on about 2 1/4. Should I raise it? I was wondering is my dry mouth and throat caused by a too low setting on the humidifier or am I sleeping with my mouth opened? (my wife said she seen me with my mouth opened a couple of times last night).
- Last question. Normally, how long does it take to feel better? I haven't slept good in 4 1/2 years.
Thanks ahead of time.
Hi. I'm Mr.NoSleep
From your description, my guess would be that you're leaking therapy air out of your mouth......and consequently that's (at least one reason) why your therapy isn't working well (or at all).
If you're going to continue to wear a nasal mask, you'll need to either tape your mouth or use Polident adhesive strips to keep your mouth from leaking. The other alternative would be to go to a full face mask.
The mask is one of the MOST critical components in this therapy.....and you need to find the right size, the right fit (including tension) and one that won't leak much.
Best wishes and Happy Thanksgiving.
Den
If you're going to continue to wear a nasal mask, you'll need to either tape your mouth or use Polident adhesive strips to keep your mouth from leaking. The other alternative would be to go to a full face mask.
The mask is one of the MOST critical components in this therapy.....and you need to find the right size, the right fit (including tension) and one that won't leak much.
Best wishes and Happy Thanksgiving.
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Hi, I went through various (not cheap!) nasal masks (1-2 of which are my back-ups now) and a couple of pillow/prong types (totally unsuitable for me), but the past few weeks I've had a trial of the new Fisher Paykel 432 (not the older 431) full face mask (with that aero-bar kind of very light foam around the frame) and I am SO in love with it! I wasn't even sure I needed a FF type, and was trying it out more for the foam (when you sleep on your front, other masks press into your face!) but I may have killed two problems in one and can't wait for my new one to get here!
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inacpapfog
- Posts: 538
- Joined: Tue Nov 16, 2004 6:03 pm
- Location: SC
I agree with Wulfman about the cause of your seemingly ineffective therapy. Taping or Polident strips can certainly solve that problem, though it might take some trial and error to find the tape that works best for you. The full face masks also solve this mouthleak problem for some, so can the Hybrid mask. But, with you saying that you have a narrow face, the Hybrid would probably leak too much. Would be great if you could find a DME that had several of these FF masks for you to try on and sample.
I agree with Wulfman.
A very very dry mouth indicates potential mouth leakage. Air goes in nose and out mouth. That is not the point of CPAP.
You not feeling better could also be the same issue. No therapy since it comes back out your mouth would make CPAP not effective.
Many of us here prefer nasal masks. I use the pillows rather than the nasal mask type. But that is up to your comfort.
Tape your mouth with gentle paper tape and use some form of chinstrap if you need that too to keep the chin supported and mouth closed. The tape will seal the lips if the mouth is closed. Some can get by with one or the other, I use both. Chin strap need not be commercial. Any stretchy material or ace bandage etc will be fine.
Try this first. If leakage persists around the seal of your mask, consider a different mask. I don't know that your current mask is one of the more popular. It is definately one of the cheapest (probably why you received it to begin with).
Other option is full face mask. Each option has its advantages and disadvantages. You have to try to decide.
Good luck and let us know what happens.
If you seal up those leaks, you may be able to go back down to 8 where you started.
A very very dry mouth indicates potential mouth leakage. Air goes in nose and out mouth. That is not the point of CPAP.
You not feeling better could also be the same issue. No therapy since it comes back out your mouth would make CPAP not effective.
Many of us here prefer nasal masks. I use the pillows rather than the nasal mask type. But that is up to your comfort.
Tape your mouth with gentle paper tape and use some form of chinstrap if you need that too to keep the chin supported and mouth closed. The tape will seal the lips if the mouth is closed. Some can get by with one or the other, I use both. Chin strap need not be commercial. Any stretchy material or ace bandage etc will be fine.
Try this first. If leakage persists around the seal of your mask, consider a different mask. I don't know that your current mask is one of the more popular. It is definately one of the cheapest (probably why you received it to begin with).
Other option is full face mask. Each option has its advantages and disadvantages. You have to try to decide.
Good luck and let us know what happens.
If you seal up those leaks, you may be able to go back down to 8 where you started.
nosleep
This is a classical case of cpap vs apap and the potential difference an apap can make.
In a situation where a patient has a sleep lab and then a trrtation a pressure is detemined in large part to very subjective paramaters and perhaps on what worked the night of the study.
From there everything is total guesswork as far as pressure is concerned.
An apap would give you all the info you need to determine a proper pressure.
One day the docs will learn this. I hope.
But then again, there are many reasons a person can be compliant with PAP and not feel s/he is improving. But an apap can nail down the pressure guessing game.
In a situation where a patient has a sleep lab and then a trrtation a pressure is detemined in large part to very subjective paramaters and perhaps on what worked the night of the study.
From there everything is total guesswork as far as pressure is concerned.
An apap would give you all the info you need to determine a proper pressure.
One day the docs will learn this. I hope.
But then again, there are many reasons a person can be compliant with PAP and not feel s/he is improving. But an apap can nail down the pressure guessing game.
RE: The problem with dry mouth.
I agree with the others that a leaking mask will do this. Another thing to think about with humidification is the weather. I don't know what part of the country you are in. We have had our heat on the last few weeks and I've noticed that a setting on humidifier of 2-3 now needs to be a 4 or the throat and nasal areas feel dry.
I forgot to fill the tank one night. Woke up about 3 AM and discovered what happens with no humidification--burning sensation.
I agree with the others that a leaking mask will do this. Another thing to think about with humidification is the weather. I don't know what part of the country you are in. We have had our heat on the last few weeks and I've noticed that a setting on humidifier of 2-3 now needs to be a 4 or the throat and nasal areas feel dry.
I forgot to fill the tank one night. Woke up about 3 AM and discovered what happens with no humidification--burning sensation.
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| Machine | Humidifier | |
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birdshell
- Posts: 1622
- Joined: Sun Mar 26, 2006 11:58 am
- Location: Southeast Michigan (Lower Peninsula)
Have you considered getting a second opinion on any of these questions? The opinion of one surgeon may not be the same as that of another; and as many of us on this forum know, sleep doctors vary widely in their opinions and choices of treatment.
I do not know too much about your conditions, but I do know that with many of my medical problems it was difficult to find doctors who REALLY knew what to do--even some who were board certified.
You have probably done some Internet research, and may find it useful to search this site and some of the other sleep apnea forums for additional information. Several are out there, and some of the same people who belong to this one are also members of those.
Tomjax makes some good points about an APAP, with the capability to record many facts about your xPAP therapy. You may wish to ask your sleep doctor about this. Analyzing the information could tell you about leaks and mouth breathing, among other things. Searching for the topic “APAP” will give you all the information you can take!
Should you decide to try taping your mouth, here is one of my favorite postings on the subject. I use almost the same regime.
Link to Just One Man’s Very Successful Mouth Taping Routine
This one mentions the denture strips and discusses the subject:
Link to Denture Cream and Strips for Controlling Mouth Leaks
One thing no one has mentioned yet: even though you are receiving adequate treatment, the good effects may be very slow in showing up in your life. Some people feel IMMEDIATELY better; others, such as I, have a much slower improvement. This is a very individual thing,
By the way, I take 400 mg of Provigil a day and call the medication my "peppy pill" and it helps me immensely. Some of my other medications cause drowsiness, though, and taking Provigil in the morning and mid-day helps counteract that side effect.
My pressure is also set at 9 cm, and I have been a CPAP user for only 8 months, but I do see a difference.
Best wishes with your search for effective treatment.
I do not know too much about your conditions, but I do know that with many of my medical problems it was difficult to find doctors who REALLY knew what to do--even some who were board certified.
You have probably done some Internet research, and may find it useful to search this site and some of the other sleep apnea forums for additional information. Several are out there, and some of the same people who belong to this one are also members of those.
Tomjax makes some good points about an APAP, with the capability to record many facts about your xPAP therapy. You may wish to ask your sleep doctor about this. Analyzing the information could tell you about leaks and mouth breathing, among other things. Searching for the topic “APAP” will give you all the information you can take!
Should you decide to try taping your mouth, here is one of my favorite postings on the subject. I use almost the same regime.
Link to Just One Man’s Very Successful Mouth Taping Routine
This one mentions the denture strips and discusses the subject:
Link to Denture Cream and Strips for Controlling Mouth Leaks
One thing no one has mentioned yet: even though you are receiving adequate treatment, the good effects may be very slow in showing up in your life. Some people feel IMMEDIATELY better; others, such as I, have a much slower improvement. This is a very individual thing,
By the way, I take 400 mg of Provigil a day and call the medication my "peppy pill" and it helps me immensely. Some of my other medications cause drowsiness, though, and taking Provigil in the morning and mid-day helps counteract that side effect.
My pressure is also set at 9 cm, and I have been a CPAP user for only 8 months, but I do see a difference.
Best wishes with your search for effective treatment.
Be kinder than necessary; everyone you meet is fighting some kind of battle.
Click => Free Mammograms
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Mr.NoSleep
- Posts: 14
- Joined: Thu Nov 23, 2006 1:28 pm
- Location: Ohio
Depends on the insurance, but most will buy you a new mask every 3 to 6 months.Mr.NoSleep wrote:Thanks everyone.
I have a question about those masks. How does that work with insurances? Is this something I will have to pay for on my own?
If I try the taping my mouth shut what kind of tape do I use?
Moogy
Moogy
started bipap therapy 3/8/2006
pre-treatment AHI 102.5;
Now on my third auto bipap machine, pressures 16-20.5
started bipap therapy 3/8/2006
pre-treatment AHI 102.5;
Now on my third auto bipap machine, pressures 16-20.5
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Mr.NoSleep
- Posts: 14
- Joined: Thu Nov 23, 2006 1:28 pm
- Location: Ohio
I just did a search on this site for APAP and got 56 pages of info. So I'll ask you here. What is it and how does it differ from CPAP?
I also noticed some people have a little picture where their masks and machines are and they also show the software. What is CPAP software? How is that used? I'm sorry I sound so ignorant. I figured if I started asking some questions that would help me.
Back to my original post, I also toss and turn a lot in my sleep and I like to sleep on my stomach (that's comfortable for me), so I'm not sure how that effects the leakage. I also suffer from anxiety and depression as well as mitral valve prolapse (heart) and seasonal allergies, I am on prescriptions for all of these. I often wonder if these are also a reason I feel like crude.
I also noticed some people have a little picture where their masks and machines are and they also show the software. What is CPAP software? How is that used? I'm sorry I sound so ignorant. I figured if I started asking some questions that would help me.
Back to my original post, I also toss and turn a lot in my sleep and I like to sleep on my stomach (that's comfortable for me), so I'm not sure how that effects the leakage. I also suffer from anxiety and depression as well as mitral valve prolapse (heart) and seasonal allergies, I am on prescriptions for all of these. I often wonder if these are also a reason I feel like crude.
I cannot speak to your heart conditions, but I can answer a couple of your questions.Mr.NoSleep wrote:I just did a search on this site for APAP and got 56 pages of info. So I'll ask you here. What is it and how does it differ from CPAP?
I also noticed some people have a little picture where their masks and machines are and they also show the software. What is CPAP software? How is that used? I'm sorry I sound so ignorant. I figured if I started asking some questions that would help me.
Back to my original post, I also toss and turn a lot in my sleep and I like to sleep on my stomach (that's comfortable for me), so I'm not sure how that effects the leakage. I also suffer from anxiety and depression as well as mitral valve prolapse (heart) and seasonal allergies, I am on prescriptions for all of these. I often wonder if these are also a reason I feel like crude.
First, an APAP is an automatic CPAP. It changes the pressure as your pressure needs change throughout the night. This is better for some patients, for example those whose pressure needs vary with different sleeping positions.
APAPs are slightly more expensive than CPAPs. Some medical suppliers are reluctant to provide these units, since insurance pays the same amount for these that they pay for the less expensive CPAPs.
Some CPAP units allow monitoring through software. Many CPAPs do not have this capability.
Insurance rarely (if ever) will pay for the software, but some patients buy it for themselves.
Moogy
Moogy
started bipap therapy 3/8/2006
pre-treatment AHI 102.5;
Now on my third auto bipap machine, pressures 16-20.5
started bipap therapy 3/8/2006
pre-treatment AHI 102.5;
Now on my third auto bipap machine, pressures 16-20.5
Everyone has their own tape that they like. I just use one from the pharmacy. I like the 3M gentle paper tape (nextcare) (2 inch wide). For me at least I find it isn't too abusive to get off in the morning. Arm yourself with some chapstick or the like for after you take the tape off.
Also, just be aware that there have been posts on vomiting with tape and aspirating vomit. I for one have never vomited without waking up and feeling queasy. So as long as I fold under the ends of the tape so I have a tab to grab and pull off I feel confident that I am in no danger.
No one seems to address what happens if one vomits into a full face mask.
I would consider not taping if I were drinking heavily or otherwise not able to wake up and function (not that I do that anyway, just something to consider...)
Also, just be aware that there have been posts on vomiting with tape and aspirating vomit. I for one have never vomited without waking up and feeling queasy. So as long as I fold under the ends of the tape so I have a tab to grab and pull off I feel confident that I am in no danger.
No one seems to address what happens if one vomits into a full face mask.
I would consider not taping if I were drinking heavily or otherwise not able to wake up and function (not that I do that anyway, just something to consider...)
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Rapunzel111
- Posts: 36
- Joined: Sat Sep 09, 2006 1:26 am
Hi Mr.NoSleep-
Welcome to our forum.
It sounds like you need a second opinion.
I don't know what that medication you mentioned is for but maybe it is to
make you think more is being done to help you than is being done.
If the medication is a sedative and you have sleep apnea,it could be deadly for you.
I think that maybe a new mask like the swift mirage nasal pillow system
might help you more than the type you have and also try tying some old pantyhose around your head and looping it under the straps and under your chin (with your mouth tightly closed in its normal position)and tie it in place.This tip is courtesy of Rested Gal,a poster here.This tip will keep your mask on and keep your mouth closed.CPAP treatment won't work if your mouth opens during sleep and lets the air blow out.If all else fails,try experimenting with taping your mouth shut with tape.See other posts here for how-to's.
-Rapunzel111
Welcome to our forum.
It sounds like you need a second opinion.
I don't know what that medication you mentioned is for but maybe it is to
make you think more is being done to help you than is being done.
If the medication is a sedative and you have sleep apnea,it could be deadly for you.
I think that maybe a new mask like the swift mirage nasal pillow system
might help you more than the type you have and also try tying some old pantyhose around your head and looping it under the straps and under your chin (with your mouth tightly closed in its normal position)and tie it in place.This tip is courtesy of Rested Gal,a poster here.This tip will keep your mask on and keep your mouth closed.CPAP treatment won't work if your mouth opens during sleep and lets the air blow out.If all else fails,try experimenting with taping your mouth shut with tape.See other posts here for how-to's.
-Rapunzel111