Newbies unite!

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snuffie3456 +1 point · about 1 year ago

Hi, I am only three days into getting used to the CPAP. It has been a real roller coaster ride. Crazy panic attacks, calm breathing, and everything in between. In reading this site, I have learned valuable tweeks, gained confidence in "messing" with some of the settings, and discovered a potential community in this terribly lonely process. (Even the most loving spouse doesn't want to be awakened at 2 hour intervals for CPAP crisis intervention). Perhaps I am only shouting out into the void, but I think it would helpful to have a forum for those of us in the early stages of adjustment. Does anyone else feel overwhelmed by this whole thing?

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sleeptech +1 point · about 1 year ago Sleep Commentator

You say that you gained confidence in "messing" with some of the settings. Exactly what changes did you make? There are some forums which support, and even recommend, potentially dangerous practices in modification of CPAP settings. I'm sure don't want your health to be at risk as a result of some dodgy advice. I'm not a doctor but I have 16 years experience in the field as a technician and am happy to give you the benefit of my knowledge.

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snuffie3456 +0 points · about 1 year ago

Oh! Nothing weird at all. For example, I found that skipping the ramp cycle and going directly to my prescribed pressure eliminated that suffocating feeling I was getting. I also snugged up my mask, which eliminated some of the blowing sounds I was getting with each breath. These are all things that the tech discussed with me while setting up the machine. Thanks for your support!

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sleeptech +0 points · about 1 year ago Sleep Commentator

That all sounds pretty harmless. Interesting what you say about the ramp. I tell my patients that they may be more comfortable with or without, and that it's a personal thing, so they should try both to see which works best for them. It is all too common in the sleep industry for people to adopt a one size fit all approach rather than meeting individual needs. This also usually involves using the version of treatment which costs the most (and therefore makes the most money for someone).

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pattyloof +0 points · about 1 year ago

Snuffie, I felt that way at first. Hard to believe it's been five months since I ended up in the ER with chest pain and two and a half since I got my CPAP. The last two months have been spent trying a different thing every night to see if I could find a way to sleep comfortably. I had all sorts of problems with the mask, the headgear, etc, and I'd say 85-90% of this has been corrected. But I had to be proactive and not wait for anyone else to make it easy. Looking at it as a puzzle to be solved (at least for me) made the process much better.

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snuffie3456 +0 points · about 1 year ago

Pattyloof, I agree. Embrace it or suffer it, I prefer the former. By day it is easy to be a positive problem solver, but in the middle of the night it can be pretty upsetting when you can't sleep. For the past two nights I have gone to bed WITHOUT the CPAP, then put it on in the middle of the night when I wake up to pee. Somehow I have no trouble falling asleep with it at that time, and I get 3-4 hours of sleep with it on. It's not ideal use of the device, but I figure that I am getting more comfortable with the thing, and it's a more positive experience. Over time I hope to be able to just put it on when I go to bed.

Did you end up buying a lot of different things out of pocket? And what was your best tweek?

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pattyloof +0 points · about 1 year ago

I have had problems with dry eyes and mouth. I've bought eye ointment, "dry mouth" mouthwash, swim goggles, and a wide chin strap. I couldn't tolerate the goggles and the ointment makes my eyes feel worse. The mouthwash helps some. The chin strap has been the best purchase so far, it really helps with the dry mouth.

I still get sore skin, with ridges, on my head and neck. I've been adjusting the headgear (I had to switch to a total face mask because air was blowing through my tear ducts!), focusing on making it comfortable. One thing my RT said was make a mark with a sharpie before you adjust anything and make small adjustments. That's really helped a lot.

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snuffie3456 +0 points · about 1 year ago

Ugh. Bummer. I don't know if this helps, but...

My opthomologist gave me a list of eye drops that are truly effective vs the ones that aren't. I never realized how different they are. Top rated one was Systane Balance. I use it before bed, and during the day in the winter. Works great.

Also I have found that wearing a mouth guard and lower retainer CURED my dry mouth issues. Another guy on these forums mentioned that he uses a boil and bite mouth guard that you can pick up at most sporting good stores.

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ShiftWorker +0 points · about 1 year ago

Snuffie, I am not new, but am really giving this a good try this time. Over five years ago I had a sleep study, well two, then was sent home with a CPAP machine and a huge Full Face Mask, my pressure was set as high as that machine would go, 20 cm h2o I think is what they call it. I was told to get used to it. Well, I couldn't! After much complaining to people who don't care, my primary care doc does not know much about sleep apnea and cpap, I went into A-Fib last December. I decided that that was not fun, so asked my doctor for a referral to see a sleep specialist. Three more sleep lab studies and a new ASV machine later, i am trying to get used to therapy, my pressure still runs fairly high so I still need a full face mask, good thing the newer style masks are much better then my first one! I have made my mind up that I will make this work this time, my other health problems are starting to pile up, this is a good start (getting some restful sleep) to get all under control!

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snuffie3456 +0 points · about 1 year ago

Wow-you are a trooper. Negotiating this stuff isn't easy, and it sounds like you are pushing through it. What is your biggest challenge, comfort wise?

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sleeptech +1 point · about 1 year ago Sleep Commentator

If you are in the very early stage and still adjusting to using PAP therapy, it can be very helpful the wear it while watching TV or (depending upon your mask) reading a book. As you are awake this has no therapeutic benefit, it simply helps you to get used to the feeling of using your machine. And keep asking questions until you get the answers you need. There are people out there, such a myself, with a great deal of knowledge and experience in this area and who are willing to help.

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snuffie3456 +0 points · about 1 year ago

Hi sleeptech! I have heard that advice before, but it strikes me as kind of weird from a sleep hygiene perspective. I mean, we are told NOT to read or watch TV in bed, so wouldn't it also be a bad idea to to so with the CPAP on? I tried this on the first couple of nights with bad results. I'm just curious to know if it actually works for people.

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sleeptech +1 point · about 1 year ago Sleep Commentator

Howdy Snuffie

I was not suggesting that you wear CPAP in bed while reading a book or watching TV, but in your living room or wherever else you might normally do these things (besides your bed). It should not have any significant effect on your sleep hygiene. The idea of not reading or watching TV in bed is related to classical conditioning. If the only thing you do in bed is sleep, then your brain learns to connect lying in bed with sleep. Over time your brain will probably become conditioned to connect CPAP with sleep, but at this early stage it is more important to just get used to it. It won't connect CPAP with sleep if you're not sleeping with it. The using CPAP during the day while relaxing thing works well for some people.

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snuffie3456 +0 points · about 1 year ago

Thanks

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Felicity63 +0 points · about 1 year ago

Hi snuffie, I guess I'm a newbie, too. I don't even have a machine yet, but I'm told it's on its way. I think what sleeptech is describing is what I will be doing at first, just sitting in a chair in my room reading or watching tv with the device on and running just to get accustomed to the sound/feel of it before actually wearing it in the bed.

My concern at the moment is that apparently a device has been ordered for me without consulting me about what I feel would be best for me (heated humidity and a top-hose nose mask). I am a stomach sleeper, so we will see how it goes.

I hope that you will soon get some answers and become adjusted to the device!

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snuffie3456 +0 points · about 1 year ago

Hi Felicity, The way that my device was chosen for me was based directly to how I did during my sleep study. I was given my preferred mask automatically. I have been a stomach sleeper in recent years, which I am told is a natural thing that people with OSA to do reduce the apnea events. I have found that with the CPAP on, I am perfectly happy to sleep on sides and back.

As for wearing it while reading-I have had better results with this recently after messing with my ramp time and changing my mask position.

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ModestTanChinchilla1958 +0 points · about 1 year ago

HI Newbie here, I have been diagnosed with OSA over 2 years now. Tied CPAP and had a Septoplasty and Terbinate surgery. I have AHI of 41. Severe OSA I just got approved for Inspire, has anybody had this surgery?

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wiredgeorge +1 point · about 1 year ago Sleep Enthusiast

If you search for INSPIRE, you will see that this has come up quite a few times. Most cases it was folks like yourself asking about it but little first hand. If you go this route, please come back after you start Inspire therapy and report on its effectiveness. Good luck.

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Felicity63 +0 points · 12 months ago

I just received my new AirSense 10 Autoset for Her today. I am going to try it for the first time tonight. I feel pretty confident it will go OK because I am looking forward to feeling better! Time will tell!!

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snuffie3456 +0 points · 12 months ago

Good luck tonight! Pick a FABULOUS book-a real page turner, and give yourself permission to read with the machine on for as long as you want!!!! You can do this!!

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Felicity63 +0 points · 12 months ago

Thanks, snuffie! Well, I did read for a bit...but I picked the user's manuals because I thought it would make me sleepy :) It was a rough night! I swallowed a lot of air and am still burping a bit even though I've been up for about 3 hours now. And the new setup gives off this horrible burning electrical wire smell. I don't smell it through the mask, but I do in the bedroom near the machine after taking the mask off. I suspect it is the heated hose, so I am going to buy one that is not heated.

Well, tonight is another night! I'm getting an SD card so that I can record the data, too :)

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snuffie3456 +0 points · 12 months ago

Yucko bummer on the smell. Can't recommend a simple fleece hose cover enough. $15 on Amazon. Get the one with the zipper.

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wiredgeorge +0 points · 12 months ago Sleep Enthusiast

ResMed has a feedback system called myAir available on their website for monitoring simple metrics so you can make better decisions on how to fine tune your own therapy. You just have to sign up and you can monitor daily. Since you have a new machine, the burning wire smell is NOT normal. I am on a very similar machine (Aircurve 10) and have NEVER smelled this type thing. It may originate from the heating element but I would contact ResMed or the supplier and find out about getting rid of the machine ASAP. Could be the hose and you may want to try a non heated hose but it would concern me to smell electrical burn.

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sleeptech +0 points · 12 months ago Sleep Commentator

That smell is certainly a cause for concern. Get it check ed out ASAP. Also, you can just turn the heated tubing off if you wish. You don't have to get a whole new machine without it.

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Felicity63 +0 points · 12 months ago

How are things going with you, snuffie!?

The smell is going away. I am pretty sure it is simply "new device" smell. I am going to call my DME today, though.

I have signed up for myAir already, and I also have downloaded SleepyHead software and look at the data. I purchased an SD card because my device did not come with one, although I was under the impression that it should have been shipped with one. Makes me wonder about my DME.

Anyway, 5 nights so far! A few issues with the mask slipping at night, but I have very long hair and just have to work that out.

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snuffie3456 +0 points · 12 months ago

I have long hair, too. I ponytail it towards the top of my head, and fit the straps around it. It works pretty well to keep the air pillows in place. My issue is more sideways, as I roll around in my sleep.

Yeah, your machine should have come with an SD card standard. Did they pawn a retrofit off on you?

Things are going okay for me. I still hate the machine, but have come around to needing it to sleep. Getting about 7 hours on the machine most nights. I'm having more trouble getting up these days, but I think that's because of the darker mornings. I hate daylight savings time.

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Felicity63 +0 points · 12 months ago

I hope not, it was ordered for me as they did not have one in the store, and I saw her take it out of the box. But I don't know how I would ask that question or be able to tell. I don't think there is some way to look up its history by serial number as you would a car! (although that would be great!) Maybe if I call ResMed and provide them the serial number they could tell me if it is a factory refit/refurbish?

And yes, as soon as I roll on my side, the mask can slip, but not always? I hate to tighten the mask any further because it does rub a bit under my nose...

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