Brand new and I should be a case study with these issues

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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DebiB
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Brand new and I should be a case study with these issues

Post by DebiB » Mon Dec 05, 2016 12:18 am

Brand new here and struggling with C-PAP for about 3 months now. I'm dealing with a VA hospital and through this whole process, I've not seen a single doctor. Only techs and one time a nurse practitioner. I'm 49 and diagnosed with sleep hypopnea after having some pretty wicked heart palpitations (PVCs and PACs). They were confirmed to be far worse in sleep so the process leading to diagnosis began.

I've got chronic allergic sinusitis, chronic rhinitis, and I've had sinus surgery. I also have TMJ with some wicked bruxism (teeth grinding) that I currently have no bite guard for because I destroy them all and can't afford one out of pocket.

I have a DreamStation machine but finding a mask has been a nightmare. I'm a sometimes mouth breather so I've tried a hybrid mask but it irritated my TMJ being against my jaw. Nose masks irritate the bridge of my nose causing both pain AND horrible skin irritation (Ason and Wisp). I've tried the Sleepweaver but it's way too big for my face. Nose pillows are the only thing that sorta works. The Nuance won't stay in place under my nose (various sizes) so it's always waking me and Swift makes me feel like I'm not getting enough air as well as the vent driving me nuts blowing air on my hands (near my face on my side) or making noise blowing on my pillow. I've tried XS-M (XS fits best). Also, both the Nuance and Swift headgear won't stay on my head. It slides right up the back so I have to clip it into my hair but that isn't usually enough so I'm waking and adjusting through the night. All my gear is made for men because the VA can't seem to get women's headgear ordered for me. I've tried the Bella Loops but they made my ears sore and since I wear glasses, that didn't work. Additionally, I'm having to tape my lips shut because the chin strap not only irritates the TMJ/bruxism but also doesn't keep my lips sealed so I still "leak."

I can tell the improvement since beginning all this, even with the issues, because my sleep was so poor for so long before. But this is just ridiculous trying to find SOMETHING that works. I've searched online and researched but I have now stumped the VA techs in the Sleep Center. I'm hoping so much that you all can help me before I just give up.

Thanks in advance!

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kteague
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Re: Brand new and I should be a case study with these issues

Post by kteague » Mon Dec 05, 2016 3:19 am

Have you considered the Tap Pap nasal pillows mask? Just wondering if it being a mouthpiece might help with the bruxism too. Wouldn't solve the mouth breathing but maybe you can work on training your tongue to seal up against the roof of the mouth at the back of the teeth, and tape in the meantime. One issue that might make the mask not be an option for you would be dental work on your top teeth. If you do decide to try it, pay careful attention to tips in discussions on here to wiggle it around when fitting because once they cool they get tighter and I almost couldn't get mine off first time. Was holding hot water in my mouth to try to get it loosened.

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49er
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Re: Brand new and I should be a case study with these issues

Post by 49er » Mon Dec 05, 2016 3:22 am

Is even the Sleepweaver masks in the small sizes too big for your face? If the answer is yes, what about their pediatric mask?

http://circadiance.com/advancepediatric/

Best of luck in resolving the situation.

49er

JDS74
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Re: Brand new and I should be a case study with these issues

Post by JDS74 » Mon Dec 05, 2016 5:08 am

I was going to suggest an Oracle mask until you mentioned TMJ and bruxism - both would be counter to using this mask in standard form. It might be possible to modify an Oracle mask so that your bruxism wouldn't be an issue. I have some spare parts so that an experiment wouldn't cost anything. I had one other user make the mods and it seemed to work. Please read my post in my comments block about this mask. It might help in understanding how it works and what the obstacles to using it are. If you are interested, send me a PM and we can discuss how to proceed if you would like to try.

I had mild bruxism and ruined a couple of masks before I learned to stop doing that at night.

Instead of a chin strap to help with mouth leaks ( and mouth breathing ), you might try a soft cervical collar. It will support you jaw without putting pressure on the mandibular joint.

Keep after them to get a smaller mask designed for ladies. Proper fit is essential to make this work well.

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LSAT
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Re: Brand new and I should be a case study with these issues

Post by LSAT » Mon Dec 05, 2016 6:39 am

Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data. How does the VA monitor your therapy.....or don't they? (Thanks for your service.)

Pap-Daddy

Re: Brand new and I should be a case study with these issues

Post by Pap-Daddy » Mon Dec 05, 2016 8:21 am

DebiB wrote:I'm hoping so much that you all can help me before I just give up.
First giving up is not an option as your health will only decline.
Second most here have been thru the hoops trying to get this to work and thus have a wealth of experience - so you are in the right place.

Granted it is a steep learning curve but can be done.

I think the Tap Pap and the Oracle are reasonable things to try. The most common problem using nasal pillows is using a size which is too small. When too small you may not get enuff air. Plus the pillow slips into the nostril when it should seal along the nare - the outter part of the nostril. Start with the largest size pillow in the package move down to the smaller sizes until you get leaks or not enuff air.
DebiB wrote:All my gear is made for men because the VA can't seem to get women's headgear ordered for me.
I will not defend the VA for this but will say most here who have succeeded have had to modify things, esp. the mask headgear, somehow to fit us. Don't be afraid to think outside the box and try something different to make yours fit/work. Some use a hair scrunchie to hold the mask pressed into the face or nares, etc. to stop leaks.

Keep a notebook on the things you have tried and why they did or didn't work cuz as time goes on all things become a blur.

Did I miss where you mentioned what pressure you are using?

Also if you haven't tried one yet get a sports mouth piece for the bruxism. Sounds like you are tough on the mouth guards but these are much less costly and vary in quality, so prob worth a try.

I know the VA doesn't do dental unless it's service connected but I wonder if this blurs the lines for them? Either work on getting it service connected or as part of the OSA Therapy.

The VA doesn't have much of a support system but you can get that here. What the VA does offer is equipment and supplies, tho it can be frustrating to get some things approved thru them. You may be able to get the rest right here in this forum.

But if the VA hasn't given up on you - neither should you give up on you.

Guest

Re: Brand new and I should be a case study with these issues

Post by Guest » Mon Dec 05, 2016 8:23 am

LSAT wrote:Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data.
I'm gonna guess that she selected the wrong icon for her equipment.

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DebiB
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Re: Brand new and I should be a case study with these issues

Post by DebiB » Mon Dec 05, 2016 5:32 pm

kteague wrote:Have you considered the Tap Pap nasal pillows mask?
I feel completely confident I would destroy anything in my mouth not made of metal. LOL The first sleep study I had, I had both upper and lower guards and the tech was blown away at how horribly I was grinding and how loud it still was. I destroy every kind of night guard that exists.

49er wrote:Is even the Sleepweaver masks in the small sizes too big for your face?
I stopped by and asked they order this today. They seemed reluctant to do so before acting like they didn't even know it existed. SMH

JDS74 wrote:Instead of a chin strap to help with mouth leaks ( and mouth breathing ), you might try a soft cervical collar. It will support you jaw without putting pressure on the mandibular joint.
Like the chin strap, this still wouldn't prevent my lips from parting.

LSAT wrote:Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data. How does the VA monitor your therapy.....or don't they?
I'm not sure yet. My first appointment for that is in January. I use an iPhone app that gives me the data via bluetooth so it's in there.

Pap-Daddy wrote: Start with the largest size pillow in the package move down to the smaller sizes until you get leaks or not enuff air.
I have tried medium down to XS and XS works far better for me.

Pap-Daddy wrote: Did I miss where you mentioned what pressure you are using?
It's at 15 and ramp is on.

Pap-Daddy wrote: Also if you haven't tried one yet get a sports mouth piece for the bruxism. Sounds like you are tough on the mouth guards but these are much less costly and vary in quality, so prob worth a try.
Yeah, again, something foreign in my mouth NOT perfectly molded to my teeth.....not only will I destroy it in no time flat, it'll also trigger things and I'll be in pain the next day. I've been through so many mouth guards over the years.....

Pap-Daddy wrote: I know the VA doesn't do dental unless it's service connected but I wonder if this blurs the lines for them? Either work on getting it service connected or as part of the OSA Therapy.
I'm currently service connected for TMJ with bruxism but rated at 0%. They won't give you dental unless you're above 0%. I'm working a claim to get it raised right now. Great idea using the OSA Therapy for additional justification!

Guest wrote:
LSAT wrote:Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data.
I'm gonna guess that she selected the wrong icon for her equipment.
I'm confused on this. I selected what my machine says it is and the icon pics are exactly what I have. Maybe there's something I'm not understanding?

Thanks for all the guidance everyone. Last night was a real struggle as everything kept waking me last night. Adjustments to my mask, the hose getting in the way, the headgear sliding up the back of my head even clipped into my hair, etc. AND I was apparently grinding the hell out of my teeth last night because my jaws are killing me today and I've had a headache. Most nights aren't THAT bad but there's so much room for improvement.

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robysue
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Re: Brand new and I should be a case study with these issues

Post by robysue » Mon Dec 05, 2016 6:15 pm

DebiB wrote:
kteague wrote:Have you considered the Tap Pap nasal pillows mask?
I feel completely confident I would destroy anything in my mouth not made of metal. LOL The first sleep study I had, I had both upper and lower guards and the tech was blown away at how horribly I was grinding and how loud it still was. I destroy every kind of night guard that exists.
I am someone who used to destroy night guards in about a 12-18 month period. About 6 months into PAPing, I destroyed a brand new guard in about 4 weeks. My dentist sent me to a TMJ specialist. He and his staff took a lot of measurements in addition to the usual moulds of the mouth and worked on actually figuring out a way to heal the damage in my dysfunctional TMJ. One of the tests was a measure of the loudness of the TMJ noise, and I was one of the most extreme cases they'd seen at that point. I still chewed through several more guards (at a rate of about one every 6-9 months) and was teased as having an "acrylic deficiency in my diet. I was lucky, the TMJ guy was being paid by my health insurance rather than my dental insurance, and the health insurance actually paid for the guards. The TMJ guy thought of me as an interesting "challenge" and after I chewed through the third guard he made me, he went back to the drawing board.

He decided that there was something about the traditional guard that was setting up a "feedback" loop: In other words, while the TMJ liked the position it was in while I was using the guard, the teeth didn't. And since the teeth were not happy, they started chewing in an effort to force the guard to fit the way they wanted the guard to fit. But the more I chewed, the less stable the TMJ was, which then triggered more grinding and so and so forth until I chewed through the guard yet again.

So he took another whole set of measurements. Including some measurements that were specifically designed to figure out where the teeth wanted to be and where the TMJ wanted to be. And he designed a different kind of guard that is made out of two different materials. The idea is that the guard keeps the TMJ where it needs to be, but the teeth can slide a bit from side to side and get comfortable without finding a "lump" of plastic to chew on. My current guard turns 2 years old this spring and it's in great shape: No serious chewing signs on it yet and it works well in managing my TMJ symptoms.

My point of telling you my story is to not give up on the TMJ. See if you can find a TMJ specialist who will code things under "myofascial pain" rather than "TMJ dysfunction". That may get you some coverage for a new guard that is better made to your needs than the usual custom made ones you get from your dentist.



JDS74 wrote:Instead of a chin strap to help with mouth leaks ( and mouth breathing ), you might try a soft cervical collar. It will support you jaw without putting pressure on the mandibular joint.
Like the chin strap, this still wouldn't prevent my lips from parting.
How bad are the leaks? They may or may not be serious enough to actually need "fixin"

LSAT wrote:Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data. How does the VA monitor your therapy.....or don't they?

I'm not sure yet. My first appointment for that is in January. I use an iPhone app that gives me the data via bluetooth so it's in there.
and
Guest wrote:
LSAT wrote:
Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data.
I'm gonna guess that she selected the wrong icon for her equipment.
I'm confused on this. I selected what my machine says it is and the icon pics are exactly what I have. Maybe there's something I'm not understanding?
The icon pictures for the DreamStation CPAP (brick), the DreamStation CPAP Pro, and the DreamStation Auto CPAP all look the same. Here's how you can figure out which model of DreamStation you are using. Take the humidifier tank out and turn the machine over and look for a tag with the model number on the bottom of the blower unit.

If the model number looks something like DSX200S11 you've got the brick version of the DreamStation. But if the model number looks like DSX400S11 you've got the DreamStation CPAP Pro with records full efficacy data. Finally if you are lucky you might have a model number that looks like DSX500S11, then you've got the DreamStation Auto CPAP.

Once you know for sure which DreamStation you have, go back to the user control panel and select "text" rather than "icon" for displaying your equipment.

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Re: Brand new and I should be a case study with these issues

Post by Guest » Mon Dec 05, 2016 9:35 pm

DebiB wrote:I have tried medium down to XS and XS works far better for me.
XS would explain not enuff air. It's like breathing thru a straw.
DebiB wrote: Guest wrote:

LSAT wrote:
Unfortunately, your profile shows that you have the Dreamstation CPAP which gives you no detailed sleep data.

I'm gonna guess that she selected the wrong icon for her equipment.

I'm confused on this. I selected what my machine says it is and the icon pics are exactly what I have. Maybe there's something I'm not understanding?
All the cpap machines look the same on the outside (inside most are the same also) so you can't tell different models from a picture which is why displaying your equipment in text is best. RS explained it very well. Further some record only hours of use, while others also record AHI event and leak data which is what you need to tell if things are working well for you.

Think about cars, how the same make/model look the same but can have varying differences on the inside. In the old days it could be manual or auto transmission, radio, or AC.
DebiB wrote:I'm currently service connected for TMJ with bruxism but rated at 0%. They won't give you dental unless you're above 0%. I'm working a claim to get it raised right now. Great idea using the OSA Therapy for additional justification!
If you get this thru it will be a great savings to you - but you knew that.

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DebiB
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Re: Brand new and I should be a case study with these issues

Post by DebiB » Mon Dec 05, 2016 10:17 pm

robysue wrote:My point of telling you my story is to not give up on the TMJ. See if you can find a TMJ specialist who will code things under "myofascial pain" rather than "TMJ dysfunction". That may get you some coverage for a new guard that is better made to your needs than the usual custom made ones you get from your dentist.


I don't really have those options. I'm limited to the VA healthcare. I did find someone who was amazing and also had me in physical therapy for it, and it was helping, and I was accessing this care through my TRICARE insurance I get as a military retiree. However, after two rounds of preapproved treatment and payments made, TRICARE changed their minds and pulled all the money back and I got stuck with a bill for thousands of dollars. So, I'm basically stuck. Which is why I have no mouth guard now. The mouth guard they had given me was a hard upper and a hard lower with a silicone lining. Then they'd build it back up every month because I'd still grind away so much of it. So far, I've killed two teeth and split another with my grinding. In basic training, I would wake half the sleeping bay of women. I'm actually submitting the notes from my sleep study with my VA disability upgrade because of how many times through the night she noted how incredibly loud it was through the intercom system. Side note, I've never had a mouth guard make it a year. My current dental insurance allows one a LIFETIME. WTH? LOL

robysue wrote:How bad are the leaks? They may or may not be serious enough to actually need "fixin"


Bad enough to dry my throat out and for them to have told me I needed a chin strap to prevent it after my titration.

robysue wrote:Finally if you are lucky you might have a model number that looks like DSX500S11, then you've got the DreamStation Auto CPAP.
That is what I have. I'll update my profile momentarily.

Guest wrote:XS would explain not enuff air. It's like breathing thru a straw.
All three sizes I tried of the Swift feel like I'm smothering. No other model has felt this way.


Another thing......why does the area UNDER my water reservoir keep collecting water? They very clearly and repeatedly told me not to fill the reservoir past the midline and I never have, but I keep getting water under there and even water spilling out and dripping to the floor sometimes.


Also curious if anyone just boils their own water versus buying distilled water.

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DebiB
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Re: Brand new and I should be a case study with these issues

Post by DebiB » Fri Dec 09, 2016 9:47 am

Anyone? I'm really losing hope.

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Re: Brand new and I should be a case study with these issues

Post by OkyDoky » Fri Dec 09, 2016 10:15 am

You stated you have the Dreamstation auto so I would start by downloading Sleepyhead software and looking at your apneas and leaks from your SD card. When you post your good and bad nights we might see where there could be improvement. Here is a link to show you how to get Sleepyhead.https://sleep.tnet.com/resources/sleepyhead

Then when you have it downloaded here is a link that shows you how to organize and post your results. There are 3 pages so when you get to the bottom of the page go to the next one. https://sleep.tnet.com/resources/sleepyhead/shorganize

I don't have experience with mouth guards so I can't help there but with a mask if you want to continue with nasal pillows, the P10 is small and quiet. Take a look at it. I used the Swift FX before the P10 and the way the hose fits directly into the pillows pulled on the pillows and moved it around.
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The Latinist
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Re: Brand new and I should be a case study with these issues

Post by The Latinist » Fri Dec 09, 2016 10:32 am

Just because you are a mouth breather without CPAP doesn't mean you are with it. I was a horrible mouth breather but I have absolutely no mouth breathing issues using a nasal pillows mask. It's worth a try, at least.

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Re: Brand new and I should be a case study with these issues

Post by BlackSpinner » Fri Dec 09, 2016 11:06 am

Another thing......why does the area UNDER my water reservoir keep collecting water? They very clearly and repeatedly told me not to fill the reservoir past the midline and I never have, but I keep getting water under there and even water spilling out and dripping to the floor sometimes.
It is leaking. Get it replaced.

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