taking a CPAP holiday

[Catatrina]

About a week ago one of my doctors suggested that i not use cpap for a few weeks mostly because of my ongoing struggles with proper fit of full face
masks as well as using nasal pillow Mirage Liberty full face mask and that fact that i am totally dicussed with anything and everything that has to do with using cpap masks as well as my machine, to me it is noisy he also noted that I have made several attempts to try and work through things by:getting together with my DME respiratory therapist; found a different sleep medicine md of whom i got into an argument with about the validity of my first sleep study of 6/08; i told her my first experience with the study was upsetting that i had been rudely awoken during the titrate sleep study and i could not get back to sleep after that so it was stopped around 2:00 am [question to me how can this be accurate study then?] (especially when we started the titrate study at about 11:00 pm), the new doc said perhaps i should have a repeat study and also told me "well if you lost 50 pounds you might not have to use it at all" mind you this was a woman physician and director of the sleep center who said this. She also changed the settings to 5-15 from 4-10. I also note I do awaken more at night when I am on the machine then off it because the mask feels too tight against my nose or a big thing is the machine is constantly changing pressures in the beginning which drives me nuts! like it starts at 5 and within 1/2 hr its up to 8 or 9, I also was experiencing too much air in my stomach which increased my discomfort . since not using the machine i have felt more relaxed and my focus has changed, i am writing this on the encouragement of cpaptalk.com friend Babette who told this web site helped her and she knows I could get the same help from all of you out there who i am sure have been this road before. I will say i actually am sleeping through the whole night, i do use a wedge pillow that keeps me upright and i am sleeping more on my sides, i look forward to any comments and support, thanks for listening

Catatrina

[DreamStalker]

How serious is your apnea condition?

If you are 50+ lbs overweight, your condition may already be serious enough that you should try and get yourself properly titrated and treated.

Unfortunately, losing 50 lbs may require that you treat your apnea first as it generally affects your ability to lose weight. Even if you lose the weight however, you may still have the apnea condition.

Again, the apnea and the obesity are inter-related and both are killers in the triangle of silent death.

[Eureka]

I am sorry that you are having so much trouble with your cpap journey. But it IS a journey. I wish I had answers for you, but I, too, am a beginner. Nearly anyone here has stories to tell of difficulties in their treatment. It is a journey -- sometimes a struggle -- but I can't quit. I am doing so much better since I started treatment that I don't want to go back. I hope you will get some answers from some of the knowlegable folk on this forum that will help. But one recurring theme I read is -- you are responsible for your own therapy. I have bought into that theme -- I must do whatever it takes to make it work. Best wishes to you -- and be encouraged to know you have a whole host of folk on this forum pulling for you.

[ozij]

About a week ago one of my doctors suggested that i not use cpap for a few weeks mostly because of my ongoing struggles with proper fit of full face
masks as well as using nasal pillow Mirage Liberty full face mask

Is that a sleep doctor who made the suggestion?
Which Full Face masks have you tried already?

and that fact that i am totally dicussed with anything and everything that has to do with using cpap masks as well as my machine, to me it is noisy

There are quieter machined to be had.
There are ways of convincing yourself you can and will adapt to the noise of your own breathing.

he also noted that I have made several attempts to try and work through things by:getting together with my DME respiratory therapist;

Sounds like you managed to convince this doctor that you've tried everything. Obviously, if you've tried everything a break is a good idea. Or maybe you've just convinced him that you've become so anti-cpap that nothing in the world can make it work for you at this point - and a break might help you turn to a new page.

found a different sleep medicine md of whom i got into an argument with about the validity of my first sleep study of 6/08; i told her my first experience with the study was upsetting that i had been rudely awoken during the titrate sleep study and i could not get back to sleep after that so it was stopped around 2:00 am [question to me how can this be accurate study then?] (especially when we started the titrate study at about 11:00 pm), the new doc said perhaps i should have a repeat study and also told me "well if you lost 50 pounds you might not have to use it at all" mind you this was a woman physician and director of the sleep center who said this.

The only way proven to help people loose weight and keep it off in the long run is bariatric surgery. Ask the doc. about studies showing successful, long term weight loss.
Did you agree to a new sleep study?

She also changed the settings to 5-15 from 4-10.

What was that decision based on?

I also note I do awaken more at night when I am on the machine then off it because the mask feels too tight against my nose

Most masks don't have to be tight, and certainly not when your pressure is 4-10.

or a big thing is the machine is constantly changing pressures in the beginning which drives me nuts! like it starts at 5 and within 1/2 hr its up to 8 or 9,

The automatic machine's range can be set to be much narrower, or even fixed, both options may make it less bothersome for you.

I also was experiencing too much air in my stomach which increased my discomfort

.
The new lower maximum pressure could make this easier.

since not using the machine i have felt more relaxed and my focus has changed, i am writing this on the encouragement of cpaptalk.com friend Babette who told this web site helped her and she knows I could get the same help from all of you out there who i am sure have been this road before. I will say i actually am sleeping through the whole night, i do use a wedge pillow that keeps me upright and i am sleeping more on my sides, i look forward to any comments and support, thanks for listening

I'm not at all sure what kind of support or help you want - I wrote my comments in the hope that anyone who runs into those problems will realize that they can be solved. You sound like you're very satisfied without your cpap.
Solving cpap problems needs conviction that cpap is important for your health and well-being - are you convinced of that?
O.

[guest111]

If it is any consolation, I had difficulties eraly on too. That was a decade ago. Now, it is just the opposite. If anyone tried to keep me from my machine, they would have a fight on their hands. I learned to love it. Hit the sack, put head on pillow, slip on mask, and bango, I am out cold for a good nights sleep. Even my teenager's loud parties didn't disturb me. So, hang in there.

[LoQ]

Catatrina, I'm sorry you are struggling. When you're not getting good sleep, it really is hard to have a good attitude. But 90% of this game is half mental.

There are ways of convincing yourself you can and will adapt to the noise of your own breathing.

Absolutely agree. And so many other things can be conquered with the right mindset.

It's a little hard to tell where you are at. You seem to have tried a lot of things, but most of the things you list as effort are more talking to people (arguing with people?) than working on the problems. I'm not sure this will help you, but is there anyway for you to wipe the slate clean and start over with a new mental attitude? (I just read ozij's "turn the page" comment, and that's the idea here, too.)

Suppose you started a new process of working on the problems one at a time. List each problem; omit the gripes. (For example, having a bad titration study is not a problem, it's a gripe.) Then start working on solutions to the problems. Here's an example list of problems:

My mask leaks.
My mask feels too tight.
I have difficulty falling asleep because I can hear myself breathe.
I have difficulty falling asleep because the machine is noisy.
The pressure changes are bothering me.
......

I hope this doesn't come across as critical. I get frustrated, too, and I do know how hard it is when you aren't getting restful sleep. This post is not meant to be critical, but to help you see outside of the box you are in now. Feel free to ignore anything that is not helpful. I don't presume that this advice is universally helpful.

Oh, and by the way, griping is definitely allowed here. We all have our gripes and vent them occasionally. I'm not trying to say you can't gripe, just that after you get through with the griping, let it go and work on the problems. The fact that your doctor told you to take a week off suggests to me that he or she is feeling like you are so frustrated that you can't be steered at the moment. Maybe a week off will give you time to cool off. (Unfortunately, it will do nothing to improve your sleep deficit, which is handicapping you.) I do suggest that a poor attitude is not just thrust upon us against our will. We have to cooperate with a poor attitude for it to take root.

[alnhwrd]

Cat,

If you have sleep apnea, you need cpap therapy. Period. Just like a diabetic needs insulin, just like someone with asthma needs treatment, and someone with a heart condition needs beta blockers. Adapting can be tough, but worsening health caused by ignoring the underlying condition is tougher.

Each of the complaints that you have about your treatment are ones that are common to many people who use CPAP. And each of them have solutions. It is unfortunate that doctors and DME's are unable or unwilling to help with the nuts and bolts of CPAP. It seems like they just write a prescription, hand you a machine and mask, collect your money and congratulate themselves on a job well done. I'm talking about the bad ones, there are lots of good ones who do care about their patients too. Oz had lots of good suggestions for you, especially as to using a narrow or fixed pressure to see if that is easier for you to cope with. Noisy machines can be dealt with by introducing white noise into the bedroom, like a fan, which is what I use. Some people just put their machine on the floor away from their head. I remember reading about one guy who rigged up a styrofoam cooler with air holes in it for his cpap to cut down the noise. Be inventive, read past posts and ask specific questions and you will be able to overcome almost any obstacle. Almost everyone here has experiance with CPAP therapy hurdles, and even if they can't address your specific problem you can always find lots of sympathy and encouragement.

Just remember that part of what makes holidays special is that they only come every once in a while and they don't last forever, so get done with Spring Break and come back to cpap as soon as you can. You can make it work.

[SheZAAM!]

Ozij,

I have to disagree with you on the bariatric surgery as the ONLY way to loose weight and keep it off. Weight Watchers is a very successful and medically approved program. It addresses the food as well as the behaviors associated with food. The surgery only address the food, not the behaviors, which is why a HUGE number of people that have the surgery develop other addictions.

And a person who's 50# overweight is not a candiate for Bar. Surg.

[DoriC]

LoQ listed in a condensed version the problems that my husband and so many have struggled with and thought were insurmountable. I don't feel qualified to give recommendations even though I think there are several solutions, so please don't give up and let the "pros" here jump in and help you. This therapy has been life-changing for my husband.

[BabsOffline]

Hi Cat!

Well, I definitely think you want HELP of some sort, or you would have ignored my email to you, and never joined this forum. I think you took the right step.

I do understand that you have NUMEROUS health and other problems going on right now. It might be that "taking a break" is the right step. SELLING YOUR MACHINE is NOT the right step. I hope you've taken your "for sale" ad down.

Early on, I had numerous difficulties in getting used to therapy. I did not have nearly as many health problems as you do. I am significantly more overweight than you report you are, however. I am on so many meds it's a damned embarrassment when the postman has to bring them to me. (I do mail order to save money)

You're not alone. The issues your bought up to me offline are all very familiar to me, as well. Trust me.

I do think you are overwhelmed with all the problems, and are definitely exhibiting some classic "sleep deprived" behaviors. Having multiple doctors treat multiple issues is also a problem. I'm not 100% sure how to solve either of those problems. Possibly you could ask if they could talk to each other, as well? Not sure that would work, but it might help some.

The only thing that will cure sleep deprivation is good cpap therapy, in my humble opinion. I didn't believe it the first three months of my therapy, but I'm a Convert now, and as you can see, I'm now an Evangelist, too.

Is it possible you could try a different configuration of mask and headgear and chinstrap? I am a big fan of the Nasal Aire II, worn with a chinstrap instead of the headgear. I could even set you up with one to "test drive" for free. You know how to get ahold of me.

I am leery of the 4-10 range on your machine, as well. 4 would make me feel like I'm suffocating. I do wonder if your Flex settings might be a problem. I thought I hated Auto mode when I first tried it, but discovered it wasn't AUTO that was the problem, it was the AFLEX. I had gotten used to Cflex and couldn't get used ot Aflex. I learned I could run Auto with Cflex, and was very happy. Then one day I turned off all Flex, and am doing even better. I think I've just learned to adapt to therapy, and running without flex is now my optimum setting.

Keep posting, and we'll keep doing our best to help.

Best of luck to you!
Barbara/Babette

[kteague]

Catatrina,

I'm the last who should cast stones since I live in a glass house, having already confessed in this forum of having once quit cpap. That's when I found myself here - scared to use the cpap and scared to not use it. Once my settings got straightened out and weren't causing more trouble than they fixed, I knew the other stuff was surmountable. After all, if others were achieving harmony with this treatment and finding a mask that is "the one" surely so could I. Besides knowledge, that's what this forum gave to me - personal testimonies of the rewards of perseverance, and the hope it could be my story too.

Every night when I went to bed it was in anticipation that this could be the night that things turned around for me. And little by little the scales tipped in my favor. When I first started back on cpap it was out of fear and desperation. But the first time I experienced what real sleep felt like (9 months later), I was hooked and sought after it like a drug.
viewtopic.php?f=1&t=17411&p=147964#p147964

The sound of breathing on cpap is the comforting absence of snores, snorts, and even worse - slience. Hearing oneself breathe on cpap can take some getting used to, but I'm telling you, to me it is the sound of peace, protection, and answered prayer. Hopefully you'll make your peace with it too.

I see Babs totally outted you! Selling your machine??? Next time I plan a holiday getaway, I want to use your definition of the word.

Kathy

[mars]

Hi Catatrina

Not much wisdom from me, but do think about the consequences of untreated sleep apnea. I have already been tested for loss of memory, cognitive function and dementia because of it. Not to mention all the arguments I used to get into, plus my driving was not the best at times.

It may help to think of the breathing sound as a metronome, helping you go to sleep by just counting it or casually concentrating on it. The sound of the machine will probably disappear in time, meanwhile it is your recovery machine helping you get well and stay well. Having "white noise" is certainly a very workable idea.

For weight problems, it is always worth giving Overeaters Anonymous a try, if you have not already done so.

The bottom line for all of us is that the system (for good or bad) makes most of us responsible for our own recovery. I know this is hard when you have all these frustrations on top of exhaustion. But only you can do it - one step at a time.

cheers

Mars

[Julie]

Hi, one thing occurred to me - from the way you phrased the business of pressures going from 5 to 8 over half an hour, it sounds like that is your ramp working, e.g. that the feature (ramping) on the machine designed to ease people into the higher prescribed pressure setting is bothering you, but no one adequately explained the ramp feature to you and certainly should have. A lot of us (the majority I think) do not use the ramp beyond the first few days of treatment as it does start off too low and takes too long to reach the prescribed setting. Only if our prescription calls for a very high (and not as common) setting above 15 do we feel the need of the ramp at all, so most of us just don't use it and simply turn on the machine, which goes directly to our prescribed setting (either a fixed number on the Cpap setting, or a range (similar to but different in nature from the ramp) of Auto settings, like 8 to 12, probably the most common one. Anything below 6-7 is almost good for nothing anyway (except as a step in the ramp process). Being on auto (vs Cpap, which can be switched off on an auto machine) at a range between about 4 numbers (8-12) is preferable than having things wide open at e.g. the default machine capability of 4 to 20 as it would take the machine too long to get to a called-for pressure when an apnea occurs, but even if we're on the 8-12 set-up, and an apnea registers at e.g. 15, the machine will address it and not be limited by the '12' setting. Have I totally confused you, or (hopefully!) helped? In other words I think you need to know that the initial 'falling asleep' protocol can be assisted for those who feel the need of it, by using the ramp feature, but in fact if that is just in the way of your getting to sleep, being uncomfortable by not providing enough air to start with (before it reaches the upper setting) you can turn that off, but also should get your prescribed setting(s) sorted out properly so that you get the best therapy possible for you. I also think you need to be fitted with a mask that's comfortable, and/or use some of the many tricks and items available to do that. As far as the totally insensitive weight comment made to you (which I find shocking considering where it came from) just forget it for now until you feel better, at which time you might be able to worry about weight - that's hard enough to do when you feel terrific and are getting enough sleep!

[georgepds]

....Weight Watchers is a very successful and medically approved program.....

I'm sure it helps some people, but do you have any statistics on just how many people it helps. My rough guess is no more than 1 in 20 that sign up reach their goal weight, and no more than 1 in 50 that sign up maintain that goal weight more than a year.

Got any references?

[DoriC]

but even if we're on the 8-12 set-up, and an apnea registers at e.g. 15, the machine will address it and not be limited by the '12' setting. Have I totally confused you, or (hopefully!) helped?

Julie, I didn't know that. Does the same apply to cpap at fixed setting? Will it override it also?