CPAP users, tell me some stories

In My Humble Opinion
81

If you’re congested, doesn’t this, well, sort of make it quite difficult to breathe at all???

I know I’ve mentioned before but until I was about 30, I never understood why someone would get hooked on nasal sprays etc. It was nearly impossible for me to get enough air if my mouth was closed.

Then my dentist commented on some gum issues I was developing due to breathing almost solely thorough my mouth, and suggested I might want to see a doctor to check if I had nasal polyps (common, with lifelong allergies like I had). I went to see an ENT specialist, who said he couldn’t even tell if I had polyps - because between my deviated septum and swollen turbinate tissue, he couldn’t see that far back.

Surgery to fix all that (and I presume, any polyps he found), and suddenly my nose was useful for something more than holding up my glasses.

Otherwise, I guess I’d be using a “full face” mask.

82

This was just during my bout with COVID and then the cold that I got a month later. I use a Neti Pot every night so usually I’m breathing through my nose like a champ. My jaw health depends on it.

I do have a bit of a deviated septum, which was revealed when I started seeing this jaw doc in July. It is recommended that I get that taken care of but… $$. The jaw treatment alone has maxed me out.

So, taping works as a very cheap stopgap. And I don’t have to do it every night, or change to a full mask…yet.

83

Late to the party, but here’s my experience. I started using a Philips Dreamstation about 3.5 years ago (replaced under recall this spring with the Dreamstation 2). I was fortunate that the initial settings and mask choice worked well for me. I didn’t have severe apnea (untreated AHI = 13), but I hated snorting myself awake at night due to obstruction, and jumping from almost-asleep to fully awake because my brain had decided it wasn’t going to switch over to automatic breathing as I drifted off. With the Dreamstation, my AHI was down to around 2 or 3, and I wasn’t waking up because of those few A/H events that were still happening.

I’ve been using the Dreamwear headgear with the nasal cushion. Works pretty well when on my back, but when on my side the grippy silicone tubing on my temples does tend to shift the whole assembly and can create leaks as my body fully relaxes when I drift off to sleep; I have to be very careful about positioning my head and pillow so that nothing shifts as I go fully limp while drifting off. Rarely have problems with my mouth falling open.

A few mods that made things work better for me:

  • my wife is a light sleeper, and the DS and DS2 feature a bright display and a loud-clicking on/off button. So I put the unit on a lower shelf of my nightstand to hide the lights, and I wired in a remote switchbox that sits on top of the nightstand with a silent momentary-contact switch for turning it on/off. Now when I get up in the middle of the night for a bathroom visit (or get up early for work), I can make my exit without waking her up.

  • I drilled a hole in the side of my nightstand for the hose to come out there instead of out at the front, giving me all the hose length I needed. Hole saws can be had at any hardware/home improvement store; grommets for a clean finish can be had from Amazon.

  • I installed a hanger post at the head of my bed to support the hose. Without this, the weight of the hose can pull down on the headgear, making the nasal pillow uncomfortably tight under my nose.

The DS and DS2 with their humidification reservoirs are kind of bulky, which made travel a bit of a hassle. So this spring I bought a ResMed Air Mini CPAP. Instead of a water chamber for humidification, the Air Mini uses a “heat and moisture exchange cartridge” to capture moisture from your exhaled air and give it back to you on your next breath. This is a consumable item that needs replacing after about 25 days, but the benefit is that the whole CPAP system becomes extremely compact and lightweight, much more conducive to travel.

I chose the nasal cushion for my Air Mini, which turned out to be fairly comfortable. However, the settings were problematic: I found that when I was on my side, it was so difficult to exhale that it was pretty much impossible to sleep unless I took it off. After some poking around earlier this fall, I found out how to access the hidden “clinical menu”:

From here, I discovered an “expiratory pressure relief” mode, in which the machine relaxes the pressure when it senses you’re about to exhale. There are a number of other settings here too, and I was also able to adjust the minimum operating pressure so that it was as low as it could possibly go. It now works great whether I’m on my back or side.

the Philips Dreamwear headgear has the hose attaching at the top of your head, but the Air Mini headgear has the hose exiting down toward your chest. The hose will all tend to fall/slide off the side of your bed (and end up tugging on your headgear) unless you’re creative about tucking some of it under your blanket/pillow/arm. This is a minor complaint, though; the portability of this unit is a show-winning attribute, especially for motorcycle trips or for air travel with only carry-on luggage.

I’ve since discovered that the DS2 has a similar hidden “provider menu” that you can access to tweak the settings to better meet your needs. Before messing with any of these (or the settings on the Air Mini), you should take a screenshot or write down all of the initial settings so you can get back to your starting point if you really screw things up. But if the unit has been set up so badly that it’s making you miserable, then trying other settings in these menus can be really helpful.

84

I use something like this structure to handle that: it wraps around the hose, and I clip it to my nightgown. You could also clip it to the bedding - but that might make turning over etc. difficult.

When mine arrived in the mail, I realized that it is quite literally just a Velcro One-Wrap strip fed through a badge clip. As in, you can make a dozen of them for less than the cost of purchasing a pair from an online shop. Even less money, if you have a few old badges lying around which can be divested of their clips.

My machine is a ResMed AirSense unit. I don’t love it, for two reasons:

  • The water chamber is tough to put into the machine right, and tough to remove from the machine - I have to hold the machine down with one hand and wrench the reservoir out with the other, and it’s pretty tough to do sometimes
  • The water chamber is too damn small. If I sleep in on the weekend, it runs dry - and I’m awakened to the smell of burning from the metal plate in the bottom of the chamber getting too hot. It would be trivial for the company to make a larger reservoir - just make it a centimeter or so wider (it would still fit into the machine). But if I set the humidifier option to “auto” (the machine judges how much humidity to add), the thing goes dry in less than 8 hours.

My old machine was much easier in all aspects: the water chamber portion had a lid that flipped up, and the chamber could simply be lifted out. Unfortunately they’ve discontinued that. The newer one may look sleeker, but it is much less user friendly.

85

Edit window missed, but I HAVE found a way to jury-rig a larger reservoir.

I need to find the connectors and hoses to give this a try.

86

I got Inspire just over three years ago. It’s a life-changer. (CPAP made things worse for me) Yes, the TV ads are a bit over the top with all of that “NO HOSE?!” dialog, but it’s great for traveling as all you need to carry is the remote. No bulky CPAP machine, hose, mask, needing to find the appropriate water, nothing to clean, no parts to wear out and replace (other than a pair of AAA batteries that last about ten months). The device is designed to last 10 years, but real-world experience is showing the device typically lasts 11 years before needing to be replaced.

I sometimes wake up with a dry mouth, and you (and whoever you share a bed with) need to remember that it’s a treatment for obstructive apnea, not snoring. I snore a lot less, but not entirely silent. It’s also a bit of a marathon to land on the optimal settings, so don’t expect a “one and done” instant fix. But if I fall asleep without turning it on, falling asleep at 3PM the next day reminds me. :cry:

87

This week’s episode of QI (British panel show) talked about both mouth taping for snoring and circular breathing with the didgeridoo.

The QI elves are watching us!

88

I’m not sure if I have the right questions. Is it intrusive? Does it feel freaky? What was the procedure like?

89

When you turn it on at bedtime, it buzzes your tongue for a second or so, then stops. Once you’ve asleep and a predetermined startup timer elapses, it engages, sensing your breathing and stimulating the nerve. If you wake up in the middle of the night, it can feel a bit odd as it probably will start firing off a bit randomly.

The implant procedure is done under general anesthesia, so it’s definitely invasive. I find it a lot less intrusive on life than CPAP was - it doesn’t provoke sneezing fits, doesn’t make raw spots on my face, doesn’t need to be cleaned, far easier to travel with… It took about a month before I could comfortably lay on my right side due to where the breathing sensor was positioned between two ribs. The implant process has been simplified now to avoid that rib placement so I can’t speak to what it feels like, but it is surgery so there is going to be some recovery time with discomfort and lifting restrictions for a handful of weeks.

If you’re on Facebook, there’s an unofficial support group that I’m in: Inspire Therapy for Sleep Apnea Support Group | Facebook

Inspire itself also has a Facebook presence but they don’t get much farther than “You can find an Inspire doctor near you at…”

90

Thank you for the reply. Gives me a lot to think about. Did they have to do sleep studies after the procedure to see hown effective it is or does it have its own sensors?

91

Yes, there will be at least one sleep study in the run-up before getting Inspire, done before a test called a DISE or drug-induced sleep endoscopy, where they knock you out long enough to see how your throat collapses in your sleep to see if Inspire can have a good effect on it. You need to be in a certain range of apnea scoring - believe it’s something like an AHI of 15-65, and primarily obstructive vs central apneas. Inspire doesn’t tell you to breathe, so it won’t work on centrals. If you’re out of range on AHI or type of apneas, there’s no point going farther with more expensive testing.

Post-implant, there will be at least one titration sleep study done in-lab with Inspire techs in attendance. They will test different settings and find what will probably be your ultimate “best” settings and level. About a year after my titration, I had another at-home study to confirm the system is working as expected. Happily, it is, and my AHI has been knocked down from 61 to 5.

92

I’m scheduled to go in for a sleep study in January to see if my CPAP needs to be adjusted. Would it be worth looking into whether I would qualify for Inspire? I don’t really have much problem using my current CPAP, but I travel occasionally and it would be nice not to have to haul my CPAP on my trips.

93

I wouldn’t even consider an invasive surgery unless the CPAP was not working. I doubt your insurance would cover it unless it was a medical necessity

94

The sleep doctor brought up Inspire so I’m assuming everything points to me being eligible.

95

I live in South Florida where we can expect a power outage for up to a week at a time. Since I live in an apartment, I can’t use most alternative standalone generators, so I’ve been thinking someone should invent something that can charge off a car battery. Now, someone has invented a standalone charger specifically for CPAPs. Here are some reviews, positive and negative: EXP PRO Has anyone used one of these to charge their CPAP?

96

Now that I think of it, invasive surgery might be a problem for me. Due to a heart condition I’m on a blood thinner (Eliquis) and when they scheduled me for an upcoming endoscopy I was told that I had to stop taking it for two days prior to coming in. (I’m not sure why, because I never thought of an endoscopy as invasive surgery).

97

If there’s a screw up that causes you to start bleeding blood thinners turn bad days into really, really, bad days.

98

I suppose so. However, last October I had out-patient ablation surgery to correct an A-fib problem (the reason I was on the Eliquis in the first place) and the only medication I was told to stop was my Metformin and Metoprlol the morning of the treatment. And that was more invasive than an endoscopy, since it involved running a catheter through my groin.

Although now that I think of it, the reason for the endoscopy is to check my stomach for bleeding. I suppose being on blood thinners might affect them being able to treat any bleeders they find.

99

I can’t express enough how appreciative I am of your replies here. I had an immediate negative reaction when my doctor brought it up. Now I will reconsider. I’m going to make a follow up appointment but in the mean time I will make an effort with the CPAP

100

That’s pretty expensive and would only power my CPAP for about 3 hours. You can by a UPS that will perform the same and cost much less.