Is Anybody Happy with CPAP? Did Anyone...?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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taberge
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by taberge » Tue Jul 28, 2009 7:10 pm

Even though I had an easy time adapting and had dramatic results from CPAP, there are nights I wish I could just go to sleep with my cheek melting into soft pillow without having the mask. But, my body does better with oxygen and REM sleep so I endure.

lfzguud
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by lfzguud » Tue Jul 28, 2009 7:24 pm

Ditto to what most of my fellow hoseheads have posted.
Let me add one more thing: I've become happier since finding this site.

Sadly, sleep apnea is not very well understood - and surprisingly not even by the very doctors that often diagnose it. Couple with that most clinicians won't tell you anything more than they have to and you're on a mystery trip by yourself - unless of course you stumble (like I did) upon fellow hoseheads sharing good info on a board like this.

2 cents worth millions: Find out ALL you can about your condition. Research, Read, Discuss, ask, etc. - then repeat. It seems that most insurance companies and doctors are happy enough to just get you a machine and a mask - and then consider the problem solved. Not so. Had I bought into that then I'd still be sucking wind from the end of the tube and not getting any benefit from the therapy.

In just one visit on here I learned more about my condition, my machine, and settings that were SUPPOSED to be set per my prescription than 2 years of asking ever got me. Just a few days ago I learned how to read my machine, access the settings that until now only my "clinician" had access to and how to calibrate it. Wow did I find some intersting stuff. Like this thing called EPR - the required setting is right there in the prescription: "15 CM, Ramp PT Pref, EPR 3." 15 CM is some hard wind to be fighting to exhale against all night long for the past 2 years! Now, since I learned about the machine, how to read the 'script, etc., and actually set the EPR at 3 like the clinician missed, my therapy is much better, and yes, finally, I am happy.

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millich
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Post by millich » Tue Jul 28, 2009 7:28 pm

Wow, everybody, thank you so much for your encouraging words! I really feel like "the troops have rallied 'round me". I will bookmark this page so I can refer back to it if I get discouraged again.

Rosemary ~~~ Billmanweh ~~~ BlueHairBob ~~~ Hosehead ~~~ Wulfman ~~~ MuseInc ~~~ Paul ~~~ RubyVee ~~~ CarbonMan ~~~ Ganesha ~~~ SleepyPRM ~~~ PLR66 ~~~ Pugsy ~~~ Zaban3 ~~~lfzguud : THANK YOU ALL FOR TAKING THE TIME TO RESPOND!!!

I know I came across very pessimistic and I'm really not. For instance with the eyeglasses analogy: I really like my glasses because I can see so much better. If I can sleep better with CPAP and, hopefully, be able to feel human on less than 10 hours a night, I will like CPAP, too. It just sounded like everyone has so many problems with CPAP.

I guess I hoped to be one of those who slept like a baby during the titration study and I didn't. The main problem was that once I got up to 13cm pressure, the mask (a mirage quattro) leaked constantly. OTOH, I must say that the mask with the air blowing really felt quite good to me. I'd wake up and think: "ahhhh, air, this is g-u-u-d" (in my best Jim Carey/Bruce Almighty voice). So, I do think I can adjust to the CPAP itself as long as I don't have to constantly fight with air leaks.

Thanks again everyone for your responses! I feel blessed to have found you all!

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le_wif
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by le_wif » Tue Jul 28, 2009 7:37 pm

Remember that people tend to post when they feel strongly about something, and they feel strongest when they've got a gripe about something.

This is very true. I am one of those that feels very strongly about my husband's CPAP therapy, but he's doing well, we're doing well, so I gradually stopped coming over here and posting and reading....but since I happened by and saw your post, I'll respond in a positive light and I hope that you find it encouraging.

My husband has severe sleep apnea and has been 'on the hose' for going on 3 years. It was hard for him. There were more than a few nights when he hopped out of bed, slammed the mask down and stormed out of the bedroom. My husband is not a 'stormer' type of guy--he's quiet, patient, and quite reserved. For him to show that amount of frustration spoke volumes. But he stayed with it. After a few weeks, those outbursts became fewer. After a few months, they faded away. Since that time, he's lost about 25-30 pounds. He has energy that he hasn't had in years, and his sense of humor has returned full fold. I love that he can stay awake at night to talk with me about his day. Gone are the days when he would fall asleep immediately whenever he was sitting still, and so he is awake to enjoy movies right to the end and no longer falls asleep when I'm trying to talk to him. He can sleep for 8 hours straight--and I mean straight. No choking awake, no throwing himself around the bed as he gasps for breath. Sleep is no longer a struggle for survival but a peaceful event. As his partner, I too am sleeping better for not listening to him gasp and wheeze and choke and throw himself around. Oddly, it took me awhile to get used to the quiet in the room--for me, silence meant he wasn't breathing, so I'd wake up and give him a push to get him going again. This is much, much better. For my husband, the change was not dramatic and not overnight, but rather a gradual improvement over a period of time. Stay with it. You will not likely ever be thrilled to be on CPAP therapy. I know that he would rather sleep without the mask. However, you will reap the benefit of a longer and happier life, and if you have a family, they will be relieved and happy that you love them enough to stick with the therapy. I know that I am; I am so very grateful that he stuck with it and that he will be around to enjoy our future together. Stay the course, and reap those benefits. Good luck and God Bless.

lfzguud
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by lfzguud » Tue Jul 28, 2009 7:40 pm

You bring up another REALLY good point - DON'T SETTLE WITH THE FIRST MASK THEY GIVE YOU!

I too started with the quatro - and it leaked really bad for me. After trying just about everything out there - nose masks, nose pillows, full-face (nose and mouth), mouth only (oracle) - I finally found the Oracle to work for me. Everybody is different and every mask is too. I'm dying to try the new fitlife TOTAl face mask now.
Whatever you have to do, make sure you get to try out (meaning actually sleep with ) more than just one mask before you settle. You'll be amazed at how each one effects your therapy.

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plr66
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Re:

Post by plr66 » Tue Jul 28, 2009 7:43 pm

millich wrote: I know I came across very pessimistic and I'm really not....
I guess I hoped to be one of those who slept like a baby during the titration study and I didn't.
Heck, millich, I'd be worried about you if you did "sleep like a baby" during the sleep study!
millich wrote:OTOH, I must say that the mask with the air blowing really felt quite good to me. I'd wake up and think: "ahhhh, air, this is g-u-u-d" (in my best Jim Carey/Bruce Almighty voice). So, I do think I can adjust to the CPAP itself as long as I don't have to constantly fight with air leaks.
Great, millich!! And don't even think about it. You will have to deal with getting the often-frustrating air leaks under control. But I have little doubt from what you say, that you will be able to master that. Good on you!
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Rustyolddude
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by Rustyolddude » Tue Jul 28, 2009 8:07 pm

millich wrote:As a newbie who'll be getting my equipment soon, I gotta ask:

Is anybody actually happy with their CPAP?

Did anybody actually have an easy time adapting to CPAP?


Reading these boards, I can't help but get discouraged. It seems like everybody is having problems and nobody is sleeping. It makes me afraid to begin this odyssey. I thought CPAP was supposed to help, not make life more difficult. I realize that the people who are most happy with CPAP are probably off enjoying their lives and not reading this board, BUT STILL....

I guess I'm asking for some encouragement.
I started CPAP last Friday. 10cm, full face mask. I've had no problems adapting to the therapy including the night of the titration. I've been able to keep the mask on the whole time, 8 hrs a night avg. I'm a different person with CPAP and Ambien induced sleep. I guess I'm weird, but so far I've looked forward to the hose each night so there is hope!

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Gerald
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by Gerald » Tue Jul 28, 2009 8:09 pm

Millich........

I've been a CPAP user for 1000 nights.....with only 1-night off the hose.....only because I was out of town and stupidly left my humidifier tank at home. Even though I'm a mechanic, I wasn't able to rig a "make-do system". It was a bad night...with little sleep.

I actually like the therapy....because I control it. I usually take no more than 5-10 minutes to fall asleep.

All of my sleep studies have been miserable experiences....but going through them allowed me to obtain my Rx....purchase my own equipment....adjust and tweak it to fit my needs....and generally "do my own thing".

Fortunately, I never had to talk to a DME.....and all of my equipment has come from CPAP.com

What I have learned in almost 3-years on this forum has made the difference between poor therapy....and an experience that has been a challenge....an interesting and successful journey.

Be sure to obtain a machine that allows you to use your own reporting software.....a machine that can let you obtain a FULL report every morning if you want it. You want equipment that will allow you to perform "self titration" any night you feel the need. Accumulate data, view it with reason and logic, and you'll do well.

Welcome to the irreverent land of hoseheads.

Gerald

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sleepyprm
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by sleepyprm » Tue Jul 28, 2009 8:10 pm

Rusty and Millich, GOOD for you both!!! YOU GO! And Le_Wif, your post brought tears to my eyes. I know, I'm a sap, I cry at soap opera weddings. You all are great.

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Pugsy
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by Pugsy » Tue Jul 28, 2009 8:19 pm

My sleep titration study was awful. I slept 175 minutes. Barely enough to get any starting point on any pressure results. One week on the hose, I felt like total crap.

I got the software, figured out what was going on, addressed the issue and saw immediate improvement and never looked back. Still far from perfect but the good nights out weigh the bad for sure. While I see a gradual improvement, my husband says it is like night and day. I see him only on the weekends.

I didn't get the "overnight miracle" either. Oh well, I didn't win the Lottery either the other night. Just keep plugging along and we do get on down the road.

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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by BiPappy » Tue Jul 28, 2009 10:07 pm

I have no problems adapting to CPAP, and it's like 2nd nature to me, but I don't like it and never will. I slept like a rock during my sleep study and no Ambien needed. Who wants to wear a hose to bed for the rest of their lives? I have had surgeries (UPPP, tonsillectomy, turbinate bicoblation) to help reduce the severity of my OSA. My point is: I went through these painful surgeries to hopefully rid myself of OSA, and if it didn't, at least it'll put me in the mild-moderate OSA category. That's how much I hate CPAP.

You shouldn't be discouraged at all. You just need to mentally prepare yourself for an adjustment. TRUST and ACCEPT the CPAP machine and you will have solved 70% of your problems. The other 30% is finding a mask that you are comfortable with and leak management.

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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by sagesteve » Tue Jul 28, 2009 10:48 pm

For me? I LIKE IT! I actually look forward to it because I sleep so well. I dream in 3d Technicolor too...it's GREAT! I have a No Mask so it doesn't bother me. I also interchange it with my Quattro (which I like too). From the get go I didn't have any problem getting used to it. I'm a problem solver, so my mind set is different. I'm an artist so "adventure" is pretty much routine. I'm 62. I'm EXTREMELY happy (have been all of my life). Not much to complain about. So, do I like CPAP? YES! I'm also experimenting with longevity using oxygen...I have a 3L oxygen bleed into my set up. This experiment, along with the CPAP fits perfectly. My organs are receiving 95% oxygen from my oxygenator and my blood oxygen level runs 98% all night. People say I am looking younger and I'm feeling SO much better than I did last year. Just set your mind to solving YOUR problem and you WILL!

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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by wrenn » Wed Jul 29, 2009 12:12 am

I had a few problems in the first couple of weeks deciding on whether to go for nasal or pillows because of sores on nose but thanks to this forum the rest was smooth sailing.

I have to say I would be disappointed to find out that I no longer need this because I sleep so well with it and wake up feeling much better than I have the times that I was away and didn't have my machine with me.

I think once you realize there is no other option you might have an easier time and you will adapt better. Good luck and I hope it doesn't take much adjusting.

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gasparama
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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by gasparama » Wed Jul 29, 2009 5:34 am

CPAP makes a huge difference in anyone's life, and of course there will be problems and needs for the company of others who are sharing this experience. And there are those who are curious or have perfectionist tendencies and want to tweak their usage of the machine. Others have had bad experiences with medical personnel or with equipment providers. The list of forum membership reasons is just about endless.

For me, CPAP made a positive difference the second night of use. I am happy with the therapy. I just feel that we who have this therapy are the fortunate ones. I have no excuse to feel sorry for myself, but am concerned for those who do not know of their Sleep Apnea and may wake up--no, that should be: who don't wake up some day due to the heart stress caused by the apnea. Of course, I'm really hoping that there will be a more convenient treatment someday, but in the meantime, I'm happy. I'm happy to stay awake all day, to stay awake while driving, and to just feel better in general.

Keep asking questions when you get started. There are many people around who will be able to help you--probably better than your equipment provider. There are problems that may arise, but they can be "fixed". We're glad to have you on board!

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Re: Is Anybody Happy with CPAP? Did Anyone...?

Post by raggedykat » Wed Jul 29, 2009 7:52 am

Oh, I also quit getting up to pee 8-10 times a night that first night on CPAP and thankfully that "little" side effect of apnea has never come back!


OMG - no one ever told me about this! I am getting my equipment in a couple of weeks and if it just stops this it will be worth it. I am also so upset over this whole thing that I cry every single day about it. I know two people who have tried to use the equipment for years unsuccessfully. And it seems like all the post here talk about how awful it is, no sleep, sores on your face, having to buy thousands of dollars worth of equipment, reading reports, etc. etc. It is overwhelming. I don't understand any of the reports that are posted. I don't know how you are supposed to know how to adjust your machine. I don't understand how you are supposed to know what machine to ask for. My doctors are telling me that I am going to die in my sleep if I don't get this, but what if I can't use it. Up until I was diagnosed I felt fine. Now I feel like a ticking time bomb. My boyfriend and I fight over it all the time, he says I need to get another opinion. I tried to ask my cardiologist about it (I have a pacemaker) and he flatly refused to discuss it saying he doesn't offer opinions on other doctor's diagnosis. But I will give it a try, with an open mind. I also belong to a pacemaker club forum and it is true that most of the post generally come from people who are having problems. I (and I probably am going to regret saying this)have not had one single problem with my pacemaker. I was absolutely terrified when I went to get it in Nov. 08 and now forget that I even have it. So maybe this will turn out the same way.
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