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[-] 2Sleepy +0 points · about 2 years ago

Hi SusanR

I took a look at the Harvard Medical site that you recommended above. I thought it was quite good and comprehensive. I found the diagram of airway collapse with OSA, as well as the snoring explanation helpful. This was the first reference that I have seen that defines CPAP vs. bilevel vs. auto CPAP. In my case CPAP is the appropriate treament, but when people on the forums refer to bilevel or auto CPAP, I felt like a visitor to a foreign land. The information about weight gain and insulin resistance with OSA was also interesting to me. So overall, I think it is an excellent resource for learning more about OSA.

There was one area that I thought was glossed over a bit. That was the brief section on what to do about problems encountered with using CPAP. From my experience and reading the posts of people struggling with CPAP, this is not necessarily a quick and easy fix. When I read the easy solution of just "try a different mask or head gear", it makes me wonder if the person making that suggestion has any idea that switching to a different mask can cost $100-$150, for each new mask. Each change is costly. With the many choices available, it is pretty hard to guess what might work.

Thanks for all that you are doing to expand the resources available for people who have OSA.

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[-] SusanR +0 points · about 2 years ago

Hi 2Sleepy,

Thanks so much for your feedback and glad you found the Harvard site helpful.

We are beginning to gather more information on support and educational materials for our MyApnea.Org site and hope to post regular updates. Meanwhile, we have a section on PAP under the Learn tab. We have just finished a second section on OSA and CSA-how it is diagnosed, treated, etc and are waiting approvals from our patient advisors before we post.

Dealing with the day to day issues of how to best adjust to CPAP can be a challenge. Choosing the right mask from the start is important, as your post indicates. Many of our members have great tips embedded in the posts too and we will see if we can begin gathering real patient and expert input into a FAQ or other tip sheet. Thank you for this suggestion!

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[-] CatOwned +0 points · about 2 years ago

I have a suggested topic - sleep apnea, cpap machines and high eye pressure. The ophthalmologist and sleep doctor keep passing the buck on this one. If you have glaucoma or other high eye pressure issue, you risk blindness, so yeah, it's an important issue! How high is too high? What mask design, besides the FitLife makes eye pressure worse?

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[-] Somno7 +0 points · about 2 years ago

I would love to see more information and studies on oral appliance therapy.

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[-] Snowfly +0 points · about 2 years ago

Would like to find information and studies done on non-drowsy sleep apnea, especially on women. Have looked through PubMed and clinical trial.gov .. maybe I'm using wrong terminology? Looking for information on patients who have severe obstructive sleep apnea but don’t have daytime sleepiness. Thanks.

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[-] QuietCeruleanPeafowl8943 +0 points · about 2 years ago

I do have an interesting study I can pass along to you ....I just have to figure out how to copy it to this forum!! Ann

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[-] GoodVioletCrow9215 +0 points · about 2 years ago

Hi all, First, I would like to find out about any research being done with alternative or complementary medicine and how it helps sleep apnea. I heard that playing a didgerido helps to strengthen your throat muscles, but the research doesn't hold up and who has the time anyway?

I have chosen to use a dental device for sleep apnea, and it helps somewhat with my sleep apnea, but I'm not crazy about it either, as it clamps down on my teeth and gums and causes dry mouth, etc. But I'm sure a C-pap would drive me crazy too. is there a recommended device for a home sleep study to see if this is working?

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[-] TheresaS +0 points · about 2 years ago

@GoodVioletCrow9215 You can check with your sleep center and ask them if they also do home studies. If not, check with your CPAP supplier and they might be able to direct you to someone in your area.

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[-] SeattleGrant +0 points · about 2 years ago

Thanks for the information. I've now been using my ResMed for about three weeks, and have gotten used to the nose pillow. I very much enjoy the dashboard that you can sign into. In fact every day I log in to see how my sleep went. Of course the AHI number is the one I'm most interested in, and it shows it, along with a chart that provides your AHI number for the 14 previous nights as well.

Agree with you that even 5 AHI's an hour seems too high, though my doctor says that below 5 is great. Fortunately, I'm now usually below 2 or 3.

The dashboard is very helpful, as if I see a spike in my AHI number -- I hit a 10 two weeks ago, which isn't good -- I can look at the other charts and see that on the same night my mask seal leakage hit a high of 35. So it figures that if the Mask seal is bad, you aren't getting sufficient pressure down your wind pipe to keep from becoming obstructed.

Best of luck to everyone. The good news is that it seems to get easier. The pillow contraption that seemed so awkward at first, now seems like no problem. However, I'd like to find a better chin strap to keep my mouth closed. I'll post separately about that.

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[-] SeattleGrant +0 points · about 2 years ago

What Chin Straps do people use?

From what I've read, there can be a downside to using a full-face mask, in that it places a constant pressure on the lower jaw which can over time become a problem.

The reason I mention this is that I have a deviated septum, and hence use my mouth a lot for breathing. If you have your mouth open, the air that you pump into your nose, simply comes out of your mouth, and never provides the air pressure required to prevent obstructions, further down the plumbing.

So, I thought: Why didn't they give me a full face mask?

I've since started wearing the chin strap that came with my ResMed device. But overall, I'd say the chin strap is much more of a hassle to wear than the pillow device for my nose.

Is there a great brand out there for chin straps?

What do others use?

Mine works, but it is uncomfortable, and by the time you put it on you've four straps on your head, as both the pillow and the chin strap have a strap that goes across the top of your head, and another that goes around the back of the head to keep it from slipping off.

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[-] TheresaS +0 points · about 2 years ago

@SeattleGrant

You raise some good points, and I would like to give you some information I hope is helpful. I am just running out for an appointment now, but will gather some information for you when I return. Thank you for your post.

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[-] DanM +1 point · about 2 years ago Sleep Commentator

Hi @SeattleGrant,

Theresa will probably have some great information for you, but I'll share my experience with mouth breathing and chin straps as well.

You mention that you mouth breath a lot because of a deviated septum. If your condition causes significant obstruction, and if you are unable to move sufficient air in and out of your nose, then a chin strap is probably not going to help much. It is very likely that you would still need to open your mouth to inhale and exhale. In my experience, a full face mask would be the better option since it will allow you to breathe through either the nose or the mouth while maintaining appropriate pressure in your airway. If your ability to breathe through your nose is extremely limited, you might consider seeing your ENT to discuss the problem. If you feel you really want to continue wearing a chin strap and continue with a nasal mask or nasal pillows, there are many types of chin straps available. A simple Google of "CPAP chin straps" will return numerous results. I have personally had better experience with the style that has a fabric "cup" the chin fits in versus the style that looks like one large and wide piece of elastic. There are others who have probably had the reverse experience. The style I mention with the fabric chin support is usually a single strap, and I have had more success with placing the chin strap first followed by the mask. Placing the mask straps over the chin strap can help prevent the slipping you mention.

Thanks for your post, and I hope this information is helpful! Feel free to post about your continued efforts and experiences with your mask and chin straps. I'm sure other community members have similar issues!

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[-] TheresaS +0 points · about 2 years ago

Thank you for your posting, @DanM .

Dan gave you some sage advice, @SeattleGrant . The pressure can be intolerable for some, so the full face mask can be just the tonic for using PAP when a deviated septum is present.

Because this type of mask is bigger and the pressure is distributed to a larger surface area of the face, the PAP pressure feels more comfortable. I remember quite a few of my seasoned patients (who did not have septum issues) in the sleep center would keep a full face mask on hand for when they had a cold, or it was allergy season. Their rationale was ‘everyone gets a cold sometimes, so why be more miserable?’ They routinely used their nasal mask interfaces, and kept the full face mask tucked away for such times. They kept them wrapped or covered so they remained dust-free. The downside of having the extra mask was cost, but they wholeheartedly considered it worth “the spend.”

Regarding cost, trying one chin strap after another can get quite pricey. I was happy to see some of my patients took the initiative of crafting their own chin straps. The used various inexpensive sewing notions to help get the right fit just for them. Has anyone in this community ever heard of this or tried it?

In your case, @SeattleGrant , Dan has given you some great advice about considering the forgoing of the strap, and using the full-face mask instead.

Good luck and thank you for sharing!

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[-] SeattleGrant +0 points · about 2 years ago

Is there a downside to using a full-face mask?

From what I've read here it sounds like a full-face mask might be a nice option for those with a deviated septum -- or for anyone suffering a cold and nasal congestion.

I read somewhere that prolonged nightly use of a face mask could cause problems with the jaw. Have also read that they are harder to get a good seal.

What experiences have others had?

Sounds like I should at least have a spare one around for cold season.

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[-] TheresaS +0 points · about 2 years ago

@SeattleGrant I have heard very few problems from my patients that use a full-face mask. Most of the time the few complaints were related to claustrophobic feelings.

Your ENT physician should be able to monitor anything related to your jaw if you have concerns.

I actually know quite a few patients that rotate their masks, and sometimes have two or three on hand.

Reimbursements on PAP mask replacements vary from one insurance company to another, so it is best to check with them on your "refils." Many will allow mask replacements every few months. Ancillary equipment such as hoses and filters are also on fee schedules.

Regarding a good seal, there are numerous sizes to fit most faces. Your durable medical equipment provider (DME) can provide you with fittings and your face dimensions can be measured for a champion fit! Has anyone here been measured for a full-face or other mask?

At the end of the day, @SeattleGrant , the options you choose are totally up to you and I am sure you will do what is best for you. Being proactive in your own treatment and gaining all the knowledge you can about mask interfaces is certainly a wise move. Thank you again for sharing your thoughts and asking questions!

Keep positive! Theresa

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[-] RationalAquamarineReindeer0298 +0 points · about 2 years ago

How about some studies for people who are CPAP-compliant or trying to be CPAP-compliant? It seems like researchers are only interested in improving the lives of people who refuse to use CPAP. I am a Kaiser Northern CA customer. With Kaiser Permanente being so prevalent in California, I would think that Kaiser would be researching and recruiting patients into their own studies, yet I don't see this happening. I would like to see some of the non-profit insurance carriers work together on research that benefits everyone with sleep disorders. Thanks for the opportunity to comment.

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[-] SeattleGrant +0 points · about 2 years ago

Thanks to TheresaS and DanM.

Very helpful information. I definitely plan on getting a full-face mask to have ready to go should I get congested. I like the idea of rotating them as well. Will look into how often my insurance covers replacements.

This forum is helpful.

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[-] SusanR +0 points · about 2 years ago

Dear RationalAquarmarineReindeer,

Thanks for your suggestion on research to improve CPAP adherence! There is some work in this area, but there needs to be more--and a need for more research on compliance where the patient is an active partner (as it is the patient who knows best about the challenges in using CPAP).

Some of the researchers working in this area include Mark Aloia (from Denver), Jesse Bakker and Kate Dudley (Harvard), Terri Weaver (UIC), Molly Billings (U Washington) and others. Our team at Brigham and Women's Hospital just tested a behavioral intervention that included problem solving and motivational enhancement and found this intervention resulted in over an hour more of average CPAP use per night. It was modeled after Mark Aloia's behavioral intervention for improving CPAP compliance. It was delivered by a behavioral sleep psychologist working with a highly trained respiratory therapist--we are now planning on submitting the paper for publication and also considering how to make such an intervention more generally available, for example, via internet. I think this type of intervention could be much improved with working more closely with patients and hope to see the MyApnea.Org community work on this.

One of our next surveys that we will be unrolling in MyApnea.Org is one that focuses on adherence. We found out that there is no single adherence questionnaire we could use so we are developing a new one. I will talk to our team to see how we can get broader input on these questions for you and others in MyApnea.Org to make sure we are collecting some of the key information.

Also, in S Kaiser, I know that Dr. Dennis Hwang is very interested in these issues too and he may be able to point to work that Kaiser is doing in this area.

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[-] Arch +0 points · about 2 years ago

For those of you with downloadable machines, I use an S9 auto, there is a web site where you can find the software )FREE) to download your machines. The software is for physician and tech use but as you learn more about OSA you will find these programs very helpful. My first auto was a Resmed Autoset T and my sleep doc gave me the program to down load it. The programs graph 30 nites of sleep and each day can be studied individually. Using an AutoPAP you can see the nightly pressure changes, events and leaks. A rule of thumb for interfaces. The smaller the interfaces sealing area the lower the possibility for leaks. Therefore nasal pillows have a smaller leak ration than a full face. I Beta tested interfaces for many years and have used more than 50 different interfaces. I'm surprised no one has mentioned the "Oracle". I tested the original model and the new model. The "Oracle" is a mouth interface similar to a scuba divers mouth piece. In many cases the patient may need a nose clip when using the "Oracle" but the two models I tested had no leaks at all. The only problem, if you want to call it that, is that your humidity control should be set very high. This is necessary because by eliminating the nasal airway you body is loosing much of the body surface area which humidifies your in bound air.

Joe

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[-] UnassumingOcherSpider0496 +0 points · about 2 years ago

Because I had a very high number of red blood cells my doctor sent me for sleep studies, where I was dignosed as having mild apnea on either side, but extreme apnea on my back. The numbers have dropped slightly (partly because I could barely tolerate my first mask). Since switching to a nasal pillow it is much easier to use. I have not seen any reference to this blood problem on this forum (or elsewhere). Has anyone else been similarly diagnosed?

Please be advised that these posts may contain sensitive material or unsolicited medical advice. MyApnea.Org does not endorse the content of these posts. The information provided on this site is not intended nor recommended as a substitute for advice from a health care professional who has evaluated you.