Sleep apnea and treatments

[Reedman1]

I have the misfortune to have severe obstructive sleep apnea. It's not uncommon, at least in milder forms. Many brass players have it, as do many "civilians". I am not obese, so please don't bring that up; it's not a factor for me.
Currently, I have to use a CPAP to treat my sleep apnea. It works, but it's unpleasant and cumbersome, so I am starting to inquire about the Inspire™ Sleep implant. A device is implanted under the skin of the chest, and a wire runs up into the tongue just under the jaw to send impulses to activate the tongue muscles and open the airways during sleep.
As a trombonist, of course, I am concerned about the potential for irritation from the device caused by playing, about the potential for device failure because the makers didn't anticipate the kind of tongue activity common to wind musicians, and about what to do if the device turns out not to be suitable after implantation.
Does anyone here use the Inspire Sleep implant, or has anyone else inquired about it and gotten data?
Thank in advance...

[BGuttman]

I can't talk about that gizmo, but I have had sleep apnea all my life. I was one of the early CPAP users (1990).

I can sympathize with you about the CPAP being uncomfortable at times. Especially if you keep using the old equipment because it doesn't seem to be broken. Old masks leak. Even if they look OK. I don't think they need changing every month like my treatment vendor insists, but parts become stretched out, distorted, etc. and suddenly you aren't getting the good night's sleep like you used to.

Mask fit can be the most important factor. There are so many masks out there, and I think I've had most of them. Some people like nose cover masks and some people like nasal pillow masks (like me). Some people like a mask over the nose and mouth, and some like just nose.

Some people like humidified air, and some don't. I don't, so I leave the humidifier off the machine. Only downside is sometimes I wake up with a dry mouth. Drinking a glass of water slowly usually fixes that problem. When I used the humidifier I used to get condensation in the nose piece, which was really uncomfortable.

In short, I would recommend you not give up on the CPAP until you have tried several different designs of masks (of the appropriate size for your nose). Work with your therapist to find the optimal air pressure. If the pressure is too high, it can be very uncomfortable. If the pressure is too low you can have poor sleep. Also, I recommend an "Auto CPAP" which lowers the pressure when your breathing is regular (like sleep)

Note that it isn't always your tongue that is causing the airway blockage. That gizmo you are considering may not be useful if the problem is the soft palatte. Also, the way you describe it means it will be kinda pricey given it has to have an implanted device and electrode wire.

There are also some other gizmos that are supposed to help sleep apnea. I'm not sure any of them really work. Consult your sleep therapist if you want to try one.

Good luck with your situation. If you have any questions about machines or masks, feel free to ask. Via PM if you don't want to see a public reply.

[Doug Elliott]

I use a CPAP myself. I agree that the right mask is very important, and get a new mask and/or headgear (especially) as needed to maintain a good fit.

By chance I met a respiratory therapist who highly recommended that implant.... But I'm actually very happy with my CPAP. In the beginning I spent months experimenting with settings to get it just right.

[Reedman1]

Thanks to both of you. My current CPAP is a Philips Dreamstation (currently under recall, wouldn’t you know). It’s a pretty high-end device, with humidification and a heated hose. The mask and headgear fit pretty well. If it were possible to like a CPAP, I would like this one.
My sleep doctor is nice, but not very helpful, and the equipment provider is also not very helpful. If I have to stay with the CPAP, it will be OK, just not great.
As far as paying for the $20,000 Inspire™ device, Medicare covers it, so I wouldn’t have to go to the poorhouse. But the company doesn’t have ready answers about whether the device is compatible with a wind-playing or singing lifestyle. I doubt it ever occurred to them to test for these edge-cases. Doctors, also, tend to have a very limited understanding of things they don’t do or treat themselves, so I would want more information before I see a doctor. I wouldn’t want to be a paying guinea pig.
I’ll continue to ask questions and see if I can get some answers, and if I find out anything useful, I’ll share it with the group. Still just hoping that some trombonist somewhere has personal experience with the device that they can share.

[Kbiggs]

Another CPAP user here. I was diagnosed with severe apnea about 5 years ago. I, too, am not your typical body type. Mask fit, like Bruce and Doug said, is essential. Working with your respiratory therapist and doctor is important to getting a comfortable pressure level that reduces apneas and hypopneas, but doesn’t make you feel like you’re drowning.

I have heard of the device, but that’s it. Personally, I would be wary, even if it’s endorsed or recommended by a physician. As an example in a different area of medicine, the vagal nerve stimulator (VNS) is sometimes used in cases of severe refractory depression. However, like any implant, it needs monitoring, and the effectiveness is related to the precise location of the implant which, of course, depends upon the skill of the surgeon.

Another thought: What about your current setup do you not like, or is not working for you? Are you still experiencing more than, say, 10 apneas or hypopneas each hour (whatever is the target determined by your physician). Are you still experiencing daytime sleepiness or other symptoms? Is there something else you can try with your current setup? After all, if it ain’t broke, don’t fix it.

My father, who was a physician (radiologist), offered little advice to his children, but one thing I remember him saying is that invasive techniques should be used only when necessary.

[BGuttman]

I have the Dreamstation also. My sleep doc said the big problem with the foam is with people who use ozone to clean the machine. I don't, so it may be fine.

The Dreamstation logs data through the night on an SD card that you can download to a computer. Phillips has a Web site with a program to download the data and to present it. This way you can track Apneas and Hypoapneas. Also, I modified my Dreamstation to allow me to adjust settings. I did it mainly to be able to review my night's readings, but I am allowed to adjust the ramp rate. I can actually adjust all pressures, but I don't do it without the permission of my sleep doc and/or my therapist.

[Reedman1]

I don’t have a respiratory therapist, per se. I have a Pulmonolgist/Sleep Specialist whom I get to see once a year. Until I went on Medicare this year, the sleep doctor was out of pocket. My first couple of CPAPs were, too. When you have to pay for these things out of pocket, it costs significantly more, and you get no service. So that accounts for roughly the first 10 years of my CPAP use. I couldn’t afford to change masks when I was supposed to, because they retailed at $127.50 a pop - just for the mask. Forget the hose and filters. Now insurance covers it, but I guess I may hang on to the masks a little too long because of my prior experience.
What do I not like about the CPAP? First, having to use it. It’s cumbersome and bulky and ugly and requires maintenance, there’s that stupid hose, and the vents hiss and occasionally blow air into my eyes. Other than those things, I guess it’s fine. It’s still better than being awakened with a yell from my other half.
I appreciate the advice to avoid invasive procedures unless they are the best remaining option.

[BGuttman]

Medicare covers masks. In fact, I get a call twice a year asking me to specify what parts need to be replaced. They will give me 6 nasal pillows, 1 coarse filter, 6 fine filters, a new hose, a humidifier chamber, and a mask. Unfortunately they don't replace the headgear as often and the mask I use (Airfit P-10) tends to stretch out the strap that holds it on. I found I can buy replacement straps on Amazon at 4 for around $30.00 so I have become more sanguine about changing the strap.

Check Amazon for CPAP supplies. You will find them much cheaper than the on-line CPAP suppliers or local pharmacy.

[Reedman1]

… I found I can buy replacement straps on Amazon at 4 for around $30.00 so I have become more sanguine about changing the strap.

Check Amazon for CPAP supplies. You will find them much cheaper than the on-line CPAP suppliers or local pharmacy.

Thanks, that’s great advice.

[Doug Elliott]

I think $127 every now and then for better sleep is a bargain. I'm only on my 3rd mask in 6 years or more, but I've needed new headgear more than that because they stretch out. Buy 2 or 3 at a time if you have a mask you really like.
Currently on a Dreamstation but I don't like it as well as the Resmed I used to use, but it got noisy.
I'm not a fan of depending on a doctor to make adjustments. I'm the one using it and feeling the effects, I want to experiment myself. Adjust the pressure up a notch at a time each night until you know it's too much, then back off.
Just like mouthpieces.

www.thecpapshop.com has been great to work with.

[Reedman1]

I think $127 every now and then for better sleep is a bargain. I'm only on my 3rd mask in 6 years or more, but I've needed new headgear more than that because they stretch out. Buy 2 or 3 at a time if you have a mask you really like.
Currently on a Dreamstation but I don't like it as well as the Resmed I used to use, but it got noisy.
I'm not a fan of depending on a doctor to make adjustments. I'm the one using it and feeling the effects, I want to experiment myself. Adjust the pressure up a notch at a time each night until you know it's too much, then back off.
Just like mouthpieces.

www.thecpapshop.com has been great to work with.

$127.50 every 6 - 8 months was, at that time, quite a stretch. Lately it's better, and as I said, insurance now covers them.
Good thought about making one's own adjustments. The DreamStation is on autopilot, which mostly works. I also preferred ResMed, until it started chugging and groaning.
Thanks for the link to the cpap shop. I'll check them out.

[robcat2075]

I know nothing of this condition other than knowing people who have it, use a CPAP and grudgingly accept it.

But the company doesn’t have ready answers about whether the device is compatible with a wind-playing or singing lifestyle. I doubt it ever occurred to them to test for these edge-cases.

Something you might inquire about is... what causes these implant devices to fail when they fail?

If it worked initially then didn't... what changed? Was it something the user did? What was that?

Is there anything they already warn the user to not do?

There isn't much your tongue does while trombone playing that it doesn't do anyway in normal speech or the chewing of food except that you will be making "tah" and "tee" more times per minute than is typical.

Is that is going to shake a wire loose?

I presume this device doesn't affect the user's speech. If that's the problem then it would be a no-go for musicians.

I doubt the manufacturer will be eagerly forthcoming about what makes their device fail, but it must have happened and noted in some way.

[Doug Elliott]

As I understand it, you actually turn it on when you go to sleep and it stimulates the back your tongue to stay out of the way. The part that sometimes collapses and obstructs your airway.

A CPAP creates pressure that inflates everything and allows you to breathe better because it keeps everything open.

I'm sure those are both simplified and maybe not totally correct descriptions, but that's the idea.

[Reedman1]

As I understand it, you actually turn it on when you go to sleep and it stimulates the back your tongue to stay out of the way. The part that sometimes collapses and obstructs your airway.

A CPAP creates pressure that inflates everything and allows you to breathe better because it keeps everything open.

I'm sure those are both simplified and maybe not totally correct descriptions, but that's the idea.

That’s exactly how it’s described on Inspire’s web site.

[Reedman1]

I know nothing of this condition other than knowing people who have it, use a CPAP and grudgingly accept it.

But the company doesn’t have ready answers about whether the device is compatible with a wind-playing or singing lifestyle. I doubt it ever occurred to them to test for these edge-cases.

Something you might inquire about is... what causes these implant devices to fail when they fail?

If it worked initially then didn't... what changed? Was it something the user did? What was that?

Is there anything they already warn the user to not do?

There isn't much your tongue does while trombone playing that it doesn't do anyway in normal speech or the chewing of food except that you will be making "tah" and "tee" more times per minute than is typical.

Is that is going to shake a wire loose?

I presume this device doesn't affect the user's speech. If that's the problem then it would be a no-go for musicians.

I doubt the manufacturer will be eagerly forthcoming about what makes their device fail, but it must have happened and noted in some way.

That’s a good way to approach it. I did mention the thousands of articulations per hour in my initial conversations with representatives. I was more concerned with irritation from the wire than with device failure, but I would like to get some idea about both possibilities.

Apparently some people’s speech is affected, but I don’t know how strongly.

I’ve joined their Facebook group to see what people say.

[Doug Elliott]

I just registered my Philips Dreamstation for their recall, since the one I use is one of the recalled models. It will be interesting to see how long it takes, and if there are any issues, since I bought mine on eBay - brand new for a fraction of the normal price, and it came with a bunch of accessories.

What to expect next:

We regret that it may take some time to replace affected devices. The planned repair for the affected devices involves certain design changes, which in some markets may include review and/or authorization by the relevant regulatory agencies. We understand the impact of this issue and we sincerely regret this disruption.

For additional questions:

For more information and updates, please visit Philips.com/src-update where we will be updating answers to frequently asked questions (FAQ) as more information becomes available or call 1-877-907-7508 in the US and US territories or (0044) 20 8089 3822 outside the US.

Thank you.

[BGuttman]

We registered 3 of them (my current, my previous, and my wife's) in June (I think). I got a message in August that they were evaluating my claim.

Two days ago we received two Dreamstation II CPAP's. My wife is trying to figure out how to configure them and how to use them like we use the Dreamstations. There are differences. The new CPAPs came with shipping labels to return the old ones.

The Dreamstation II is not a simple plug and play replacement for the Dreamstation. Some of the online reviews have not been favorable.

If you don't want to replace the Dreamstation, there are instructions online on how to remove the offending foam. It just makes the thing a little noisier. And I want to underline little. Not enough to panic over. Note that Philips does not endorse this action.

[Kbiggs]

We registered 3 of them (my current, my previous, and my wife's) in June (I think). I got a message in August that they were evaluating my claim.

Two days ago we received two Dreamstation II CPAP's. My wife is trying to figure out how to configure them and how to use them like we use the Dreamstations. There are differences. The new CPAPs came with shipping labels to return the old ones.

The Dreamstation II is not a simple plug and play replacement for the Dreamstation. Some of the online reviews have not been favorable.

If you don't want to replace the Dreamstation, there are instructions online on how to remove the offending foam. It just makes the thing a little noisier. And I want to underline little. Not enough to panic over. Note that Philips does not endorse this action.

I have a Dreamstation as well. I’ll have to follow up with my insuror, Kaiser Permanente, about a replacement. Unfortunately, I am one of those people who bought an ozone cleaner (on the Sleep Medicine/Pulmonology department dnurse’s recommendation).

[Reedman1]

I’ve been reading a few posts from people who have gone ahead and gotten the Inspire implant. It isn’t always easy for everyone. I wonder if they might make a collar version…
BTW Bruce Guttman you can underline things…

[BGuttman]

...
BTW Bruce Guttman you can underline things…

I know I can underline things. The statement was for effect.

[Reedman1]

...
BTW Bruce Guttman you can underline things…

I know I can underline things. The statement was for effect.

[Crazy4Tbone86]

I am currently on the ResMed that has many nice features and doing well with it. However, I went through quite an adventure with my mask/headgear. A few years back, I had a sleep therapist really push me to upgrade my mask. She insisted that I use the “air pillows” that were inserted in my nostrils because she thought they were a much better fit for my face and my type/level of sleep apnea. She insisted that the air pillows were far superior and I had to use them because the triangular gel masks that I loved were being discontinued and soon would no longer be available.

I tried the air pillows for about 3 weeks. I was absolutely miserable. Anytime that my sinuses were the least bit congested, the air pillows would almost explode off my face. They couldn’t absorb a change in air pressure if my sinuses were not completely open. I was waking up several times every night and very frustrated.

I made an appointment with a different sleep therapist and he explained that some people do much better with the older triangular gel masks because they have a larger cubic area inside the mask and are able to absorb changes in pressure if a person has the occasional congestion or cold. He also said that the parts were NOT being discontinued. It appears that my previous sleep therapist was not truthful about my options and was just pushing the latest product.

My recommendation is to not give up on the CPAP. You might just need to experiment with the different options of masks, headgear, temperature controls, etc…. It took me some time to figure out my best combination of equipment. Now I look forward to having it on because it really does give me a great night’s sleep.

[Doug Elliott]

I tried those nasal "air pillows" one night and returned them. Painful in my nostrils. It came with 3 different sizes that all hurt.
The web store I mentioned earlier allowed returns, I don't know if they still do.

Although you could probably turn the pressure up and play trombone without breathing. I should have tried it, that would make a nice YouTube video.

Actually I think I did try it but it was in the way of my mouthpiece.

[Reedman1]

My recommendation is to not give up on the CPAP. You might just need to experiment with the different options of masks, headgear, temperature controls, etc…. It took me some time to figure out my best combination of equipment. Now I look forward to having it on because it really does give me a great night’s sleep.

I've been using a CPAP for 16 or 17 years. I tolerate it reasonably well. My current mask and headgear are probably the best I've had; the over-the-nose mask caused me such pain at the bridge of the nose that I had to adjust my glasses every 10 - 15 seconds all day long. The nostril-insert nasal pillow was uncomfortable, but tolerable. My current mask/headgear are much better than that, which is about all I can say for them.
I'm really not into playing around with masks and headgear, especially not after such a long time using a CPAP. It works well enough, even though I don't get that great a night's sleep.
But the whole CPAP thing is a primitive botch. It's two tin cans on a string in the day of the smartphone. They should really be doing much better with sleep treatments, including finding out why so many people have sleep apnea and trying to solve the root cause, not just treat the symptoms.
For the time being, I am not giving up on the CPAP, not least because it reduces the number of times per night that I get awakened with a yell from my other half. Unfotunately, the Inspire implant looks, at the moment, as though it's mostly promise and not so much delivery; it's a crap shoot as to whether it works for a given user or not, and some people have real problems with it. For $20,000, even if insurance covers most of the cost, I don't think it's that good a bet.

[robcat2075]

This all sounds very gruesome.

[Doug Elliott]

Being tired all the time and falling asleep while driving is far more gruesome.

I've been there.

[Crazy4Tbone86]

Being tired all the time and falling asleep while driving is far more gruesome.

I've been there.

I agree. I was struggling with waking up very tired every morning and being very sleepy while driving home from work every afternoon. The CPAP solved those problems.

[robcat2075]

I didn't say CPAP sounds gruesome. I said it all sounds gruesome.

It sounds like a very unpleasant malady all around.

But don't worry, I'll not express dismay for anyone's misfortune again.

[MTbassbone]

Anyone struggle with their mask being too tight? I sleep on my side, and have a tendency to grind my side of my face into the pillow. This causes the mask to leak unless I really cinch it down. The consequence I get a rash on my face where the mask sits. I clean my mask every night with CPAP wipes so I can't imagine its a cleanliness issue. Any thoughts on how to figure out to put my mask on with less pressure and/or managing the rash on my face?

[Doug Elliott]

The rash is more about your face than the mask.
Try washing thoroughly but carefully without abrasion, and use coconut oil where the mask touches. It really helps to seal it and prevent irritation.

[MTbassbone]

The rash is more about your face than the mask.
Try washing thoroughly but carefully without abrasion, and use coconut oil where the mask touches. It really helps to seal it and prevent irritation.

You think I should lighten up on the pressure too? I assume the coconut oil would help with that too.

[Doug Elliott]

Mask pressure or air pressure?
Try it as it is and see what happens.

[Reedman1]

This all sounds very gruesome.

It is. Thanks for your sympathy.

[timothy42b]

For the time being, I am not giving up on the CPAP, not least because it reduces the number of times per night that I get awakened with a yell from my other half.

Yes. When my wife got the CPAP we both started getting more sleep.

I am a light sleeper. I can tolerate some steady noise but not variation. A steady snore is bad enough but when it stops, or starts again with a snort, I'm wide awake.

I still wake when the mask slips and the hiss changes but masks are better fitting now, and if we keep up with changing as recommended this isn't too bad.

[Crazy4Tbone86]

For me, there is fine line for between making the mask too tight and too loose. There is definitely a Goldilocks zone.

Obviously if the mask is too loose, it will leak. If it is too tight, it puts too much pressure on my upper lip and I feel it the day after. Not to mention, if it is too tight, I will have marks on my face from the mask and head gear straps for two or three hours after I wake up!

[jbeatenbough]

Yes, I'm also a member of the CPAP club (for about 12 years)... not great to have to wear it, but far better than having sleep apnea.

As for tightness, I've found that it needs to be a little more loose than expected with your head off the pillow (unless you strictly sleep on your back). It tightens up a good bit when you lay your head on the pillow.