On the verge of Quitting

blownaway wrote:I've been on CPAP now for about 4 weeks with Airsense10.

First, let me say that I'm not getting any help from Doctor or supplier (LinCare). I could sooner get to talk to the POTUS than my doctor anytime soon. Also upset that I've been given this machine and told almost notion about it or my condition. Yes, I did get a copy of my report but its technical terms meant little to me. I recall that my apnea rating was something like 51 (borderline, they said).

After complaining to Lincare, they said they'd get with doctor and try to resolve my problems. That was 2 weeks ago and I've heard nothing.

Now, to my problems. I can't sleep with this contraption blowing a hurricane on my face. I wake up numerous times with wind shrieking out the mask, tongue stuck to the roof of my mouth OR I wake up with mask ripped off and on the floor. I haven't got more than 4 hrs of interrupted sleep in more than a month. Suffering sleep deprivation. 4 - 6 wakeups/night.

With pressures of 8- 11 that is more than I can bear. I find it incredible that anyone could sleep this way.

I came here looking for answers but frankly I don't get the lingo and can't get past the extensive use of acronyms.

It appears to me that I need weeks of intensive study, and I just do not have the time to become an expert on this "therapy."

First off it's great that you posted, that obviously means you want help. And you'll find it here.

1. Please don't make the mistake of jumping to a bunch of conclusions that could have a major negative health impact on your life based on assumptions and wrong information. What I mean by that is don't assume that what you experiencing is what you have to experience, several of your statements indicate that something is wrong with your mask or something else. People don't "sleep this way". Yes there is going to be a period of adaption, but otherwise you can adapt and sleep comfortably and if you don't keep posting here and people will help you figure it out.

2. I understand the problem with getting through to your doctor, this is one of the reasons you must take your care into your own hands as much as possible so you are not dependent on him/her or anyone else. I just started treatment and one of the things I did was call my doctors office and insist on getting a copy of my prescription and results, so I was not dependent on her nor a supplier, now I can order supplies from whoever when I want. And I came here so I could learn everything, because you're going to get more time devoted to you here than you'll ever get from the doctors office. As far as not understanding the lingo, then ask, and people will answer, and if you don't understand ask again.

BTW, one little example of taking your care into your own hands is finding out what your suppliers policy is if your mask doesn't fit. Mine would never have even told me, I had to ask based on advice here. So I found out it is 30 days and know I better request an exchange before that if my mask isn't working.

3. As others have said, if your rating was indeed 51 as opposed to 5.1 that's dangerous, not borderline. If you don't stick with it I do hope for your sake it was 5.1 because you're literally messing with your life if it was 51.

49er wrote:...please take the time to study the thread on using Sleepyhead at the top of this page. Take it as slow as you need to but doing so will pay off big time. If you have questions, just ask, as that is what we are here for.

Based on her/his post, I have a feeling that thread would only overwhelm them further .

All good replies... just wanted to say 'stick in there'. Soon you'll turn the corner and get to better days.

blownaway wrote:I've been on CPAP now for about 4 weeks with Airsense10.

First, let me say that I'm not getting any help from Doctor or supplier (LinCare). I could sooner get to talk to the POTUS than my doctor anytime soon. Also upset that I've been given this machine and told almost notion about it or my condition. Yes, I did get a copy of my report but its technical terms meant little to me. I recall that my apnea rating was something like 51 (borderline, they said).

After complaining to Lincare, they said they'd get with doctor and try to resolve my problems. That was 2 weeks ago and I've heard nothing.

Now, to my problems. I can't sleep with this contraption blowing a hurricane on my face. I wake up numerous times with wind shrieking out the mask, tongue stuck to the roof of my mouth OR I wake up with mask ripped off and on the floor. I haven't got more than 4 hrs of interrupted sleep in more than a month. Suffering sleep deprivation. 4 - 6 wakeups/night.

With pressures of 8- 11 that is more than I can bear. I find it incredible that anyone could sleep this way.

I came here looking for answers but frankly I don't get the lingo and can't get past the extensive use of acronyms.

It appears to me that I need weeks of intensive study, and I just do not have the time to become an expert on this "therapy."

I am concluding that the cure is worse than the disease, after giving it plenty of time and effort to adjust.

BTW, I"ve not experienced any benefit to date.

My basic problem: excessive sleepiness during the day ( may be caused by medications and not apnea but CPAP hasn't helped in finding out).

Which Airsense 10? There are quite a few models. Some are data-capable and some aren't. You need to have one that's data-capable and then get the software to monitor your therapy. Sleepyhead is "free".

An apnea index of 51 is DEFINITELY in the "SEVERE" range.......not "borderline". You were prescribed this therapy for a reason. You need to become knowledgeable on what it is, the adverse effects it has on the person's body and health.
And, even if it were much lower and "borderline", they may have caught it before yours got worse. It doesn't go from nothing to severe overnight. And, if you're experiencing daytime sleepiness, it's probably more severe than you want to believe.

Here's a link to a forum search on "quitting". You're not alone. You just need to reject that thought.

search.php?keywords=quitting+AND+quit

Your initial experiences aren't new. Many/most of us have gone through them in some way, shape or form. It's part of the learning curve and things we needed to get used to, and to overcome on the road to successful therapy.
Lincare ("Lindontcare") can't or won't help you. YOU need to take control of YOUR own therapy. The machine is YOURS, the therapy is YOURS, YOU need it and therefore YOU need to take charge of it.
The pressures you're using are actually pretty "mild" by comparison to many who are members of the forum.

If you go up to the CPAP Wiki (top row icons) and do some reading, the acronyms will start to make sense. It's like any other job or market niche in that every different industry has its own jargon. This one is no different, but it really doesn't take long to learn it......with a little effort.

The disease is MUCH worse than the therapy. And, once you get your therapy tweaked, you'll start experiencing the benefits.......and the daytime sleepiness will go away.
Anything and everything worth doing takes a little effort.

It's really ALL UP TO YOU!

Please feel free to register as a member of the forum and join in.


Den

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Please don't quit. I fought with my machine for 1.5 years ... only to come to the realization it wasn't the machine but my mask. I changed from a "wisp" to nuance pro and haven't looked back since. I loved my system one ... having upgraded to the dream station and I still won't sleep a night without my machine.

If it hasn't been mentioned already......you might try wearing your mask and breathing with the machine for extended periods while reading or watching TV. More than a few people have acclimated fairly well to CPAP therapy by doing that. I "gave up" once, and after several years of waking with a racing heart rate and migraines, I had a stern talk with myself and decided that I needed CPAP, badly ! Finding a mask that fits well is 90% of the battle IMO. Mask liners can be a huge help also. Good luck.

I have to admit that I am having a terrible time also. I have spent $500 on masks so far that I cannot use. Thank heavens Pugsy sent me several, one of which I can use. I made the air leakage into mouth problem better by setting the pressure really low, 4 to 6. But now I just cannot fall asleep with the mask. I have only fallen asleep with it about 3 times in 2 months. I wait until I am really tired to go to bed. Really exhausted. Then once I turn the machine on, I am very comfortable with my Swift FX, no discomfort whatsoever. the air feels good. Then a funny thing happens. I gradually don't feel tired anymore. It is like the air is giving me a second wind. I feel WAY too good like maybe I can't go to sleep. So after about an hour, I take the mask off and after that I fall asleep with no problem. What is going on? At first I told myself I would not remove the mask no matter what. Well that did not last long after not sleeping hardly at all for 3 nights. At least this is curing my insomnia. I have also been feeling much better lately also.

Thanks for all the great responses. I'll start first with a very basic question: What constitutes mask leaks? ONe has to exhale and I'm not sure where that goes. Under the mask? Seems like every time I move my head, I hear a leak. I can adjust it OK so long as I don't move, but that won't last long.

I can start off nicely with no leaks and pressure holding at 4.4, but just turn my head and that's the end of that. The roaring and hissing starts and I have to manipulate mask once again. Which leads to question # 2: how tight should the mask be? I seem to do better at first with looser than tighter yet after I fall asleep that doesn't hold.

Just to make things more complicated, I'm a home dialysis patient and go to bed hooked up to a dialysis machine. Wrapped and tangled in tubing and hoses, Just getting up to go to bathroom is an ordeal.

I only learned enough about Sleepyhead in order to produce an occasional report.
Doing it every day is too much fuss for my taste.
I set the display to show all the pertinent numbers, and write them down in a notebook, lined like a spreadsheet.
It only takes a minute or so. Simple is good for the lazy old frog.
Later I can look at each column of numbers, and observe trends.
My doctors like to look at it too. It tells them I give a shit, and I expect them to as well.

blownaway

You clearly have your share of problems.
Getting your sleep therapy under control may help reduce the symptoms of some of your other issues, and may even prevent some new ones from popping up in the future.

It would really help if you could look at your mask and machine and figure out the brand and exact model of each and let us know. Someone here almost certainly uses what you have and can guide you on how best to make it work or recommend an alternate solution that may work better, It would also help to know where you live. There are people here from all around the world and different countries, states and provinces have different insurance and supplier situations.
The more you share the more we can help.

I have been helping my brother in law work through some of the same problems your are dealing with, so I do understand your frustration.

blownaway wrote:Thanks for all the great responses. I'll start first with a very basic question: What constitutes mask leaks? ONe has to exhale and I'm not sure where that goes. Under the mask? Seems like every time I move my head, I hear a leak. I can adjust it OK so long as I don't move, but that won't last long.

I can start off nicely with no leaks and pressure holding at 4.4, but just turn my head and that's the end of that. The roaring and hissing starts and I have to manipulate mask once again. Which leads to question # 2: how tight should the mask be? I seem to do better at first with looser than tighter yet after I fall asleep that doesn't hold.

Just to make things more complicated, I'm a home dialysis patient and go to bed hooked up to a dialysis machine. Wrapped and tangled in tubing and hoses, Just getting up to go to bathroom is an ordeal.

What specific mask are you using? Nasal or full face?
If nasal......"pillows" (the kind that fits against the nares/nostrils) or the kind that covers your nose ("nasal mask")?
Brand and specific model would help.

In general, masks shouldn't be all that tight. If it's a nasal or full face, it should "float" on your face to allow the cushion to seal. Too tight and it crushes the cushion and can leak more.

Sometimes the bed pillow can make a huge difference. If the user's head sinks into the pillow too much it can push the mask out of alignment and leak excessively. Many of us use something other than standard fiberfill pillows.


Den

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You inhale through the hose (from the machine). You exhale through the vent holes in that little patch of tiny ones. That's a CO2 vent, and needs to be left uncovered by bedding, etc. all the time or you'll rebreathe CO2, which is not what you want to do. Mask leaks are a different story, and if you basically like your mask, but have small leaks around the cushion (best to have tried masks on while lying down when your face changes so much) you could try using e.g. Padacheek.com liners - very popular here (a member makes them, but I'm not pushing them, just letting you know they help many). Or, you could get either another mask entirely (there are so many), or else a diff. size, and better fitting - many masks have U-Tube vids that show you how to wear them! You shouldn't overtighten, because the silicone 'cushion' (thinnest part that touches your face) needs to inflate when you put the mask on, and won't be able to if you crank everything down hard.

blownaway,
Lots of people here want to help you help yourself. They need the information they've ask for so they can do that. Believe me, you don't want to quit.
Best of luck to you.

Cheers,
otrpu

Let me see if I can clarify things for you:

Leaks - This is air that leaks from under the seal of the mask. It's hard to say without your specific mask listed (please do that, btw), but most masks have vent holes. To help find yours, try turning your machine on, holding it against your stomach or leg, and feeling around the joint where the hose connects to the mask. You should find a series of small holes. You NEVER want to cover those holes! But that is the only place that air should be coming out. If you are feeling air coming out from around where the mask seals, you are having leaks. Now some small leakage, such as an occasional leak from the corner of your mouth, won't affect much. But if the mask is leaking all the time, you can't keep the pressure you need and that is a problem.

Masks - There are three main kinds. One is a full face mask (FFM) that is designed to cover your mouth and nose. The one in my signature is one of those. Next is the nasal mask, which is similar to a full face, but smaller and only covers the nose. Then there are nasal pillows. These are designed to go into your nostrils. There is another type that covers the whole face, but that is rarely used and I won't confuse you with it. When people speak of full face masks, they are generally referring to one like mine. What kind do you have?

Monitoring software - I get where you're coming from. Sleepyhead confused me greatly, because I am just not a computer person. Resmed has one that is a bit more user-friendly that may help with basic info. The link is here: https://myair.resmed.com. If you have a Resmed machine with the ability to upload automatically, follow the instructions there to register, and you will be able to simply log on and get an idea of what is happening with your therapy. If you want to get a better picture of things, people here are great with Sleepyhead and can walk you through it as they did for me.

The machine itself - Most machines have "comfort" settings that you can fiddle with without changing your therapy from what was prescribed. Don't be afraid to play around with the buttons and dials. Until you get a better feel for things, I recommend against going into the clinical settings menu that you generally have to hold a couple of buttons down at once to access. Get to know your machine first, then come back. You should be able to turn your ramp on or off and adjust humidity. Most of us love humidity! That blowing air can dry your sinuses out and be a real pain!

Hurricane CPAP - As a full face mask user, I have to say that I do not experience the hurricane effect with my mask fitting properly. That is why we are thinking you're having leaks. Once your mask is seated properly on your face, you shouldn't feel much blowing air at your settings at all. In the clinical setting (I am a nurse), that is actually how I know my patient's mask is fitting properly - because I don't hear a ton of air wooshing out. The first time I was able to fit one patient's mask properly, she panicked thinking the machine shut off. Nope! That's what it was supposed to be like all along! You should hear/feel a real difference once your mask is set. If you don't, then likely your mask just doesn't fit. We can help you with that here.

Quitting - Don't give up. Please don't give up. Like all changes, this one will take time. But hang in there! You have lots of support here. You can do it!

Hey Blownaway,

If you have a Respironics 560 or better you can set your own pressure by holding down the big control button with the little button next to it and the dial on Settings until it beeps. Let go and turn it back to Settings again, push down the big button again and you will be able to turn the dial to different settings and set them by pushing to choose and turning to see and pushing to set. Set C-Flex to 3 and adjust ramp time to zero. Make sure your hose setting matches whatever hose you have and you'll be set.

As far as mask goes: go for a full-face to startup. That will eliminate a lot of problems. Then all you have to do is get used to it. Also if you still wake up with blow-out pressures you can set the machine to just stick to one pressure. Try half-way between 0 and your high pressure. Get used to that and then talk to your doc or C-pap people about best pressure. I found the constant up-stepping that the Respironics does wakes me up. I am a lot happier on a constant pressure, but you may need special settings or equipment though not likely if you are borderline.

You can call me Sue-Ain-Yo,
sueno