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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
d.vader
 

crying and frustrated

Postby d.vader on Wed Jan 24, 2007 2:21 am

Hi,
I'm going into my 2nd trial week using this machine and mask provided by the doctor. I'm new to all this and don't really know all the apnea lingo. I have mild sleep apnea. And I'm not feeling hopeful at this point. Can mild sleep apnea really affect your life that much? I went into the sleep study because I suffer from terrible migraines. I wasn't expecting that they would find anything wrong with me. I was surprised when all this came about, and now I'm feeling resentful at the thought that I can never sleep like normal people do. But yet, I'm tired all the time. I'm depressed, forgetful, overweight with high blood pressure. I've struggled with my weight for so long, but I'm so tired all the time that the thought of exercise is insane to me. And that makes me feel lazy....it goes on and on. I feel like if I don't give this a chance then I'll suffer. And if I do, well this is suffering too.
I started out on the swift mask? I think. I just traded it in today for one that covers the nose and although it's much quieter, I started crying laying there in it. The pad that goes around my nose sticks to my face and I hate it. It's like my face is sweating where it sits. I'm just so frustrated and I'm not even sure if this is worth all this? I don't feel any different. I'm sleeping worse, not better. I need guidance from others because I feel like I'm so alone in these feelings.


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Postby Guest on Wed Jan 24, 2007 2:57 am

it takes a lot of patience when first starting out. If you can only use the machine a couple hours that is fine, work up to longer periods as you go. Allow yourself a good 4-6 weeks to get used to the mask.

The only difference between a mild to moderate and severe case is the number of events seen. Oxygen levels can also play a part in weighing that severity and how you feel daytime fatigue etc.

as for your mask, the swift is one of the more noisy masks on the market, there are trade offs to that lightweight interface. It delivers air directly into the nares and being it is winter this can cause some discomfort, summertime not so bad. Some can tolerate that, some cannot.

as for the new mask you are now using, it is important to wash your face to remove any skin oils, do not use any lotions if you can avoid it. Try washing the mask cushion (just remove the head gear from the quick release snaps, if you don't have snaps on the forehead piece, then push the button and pivot the forehead piece completely off leaving the upper straps attached.

Then take the remaing part of the mask with the cushion still attached over to the sink with some hot water with a squirt of liquid hand soap and wash and rinse the cushion, towel dry and put it back together and give it another try. Skin oils can cause the mask to slip and leak.

don't overtighten the straps, lay down in bed with your head on the pillow, turn on the machine and adjust the straps just until the leak stops. You should have about 1/8" between the forehead piece and forehead when you pull out with light pressure. It is best to undue both straps and adjust them together again with your head on the pillow, grab the ends loosen, pull out and reattach the velcro.

If you have a Ramp, use it it will offer you lower pressure for a set period of time. This can help you get to sleep. Take a TylenolPM if needed.


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Postby Slinky on Wed Jan 24, 2007 3:54 am

My first 30-35 days on PAP were rough. I got worse sleep and was more exhausted than prior to starting PAP. I didn't get noticeably depressed but I sure did get nasty!!! I didn't even like myself. Of course, I didn't have the added problems of weight and blood pressure which most likely helped. On the other hand, like you, I was Dx'd w/mild sleep apnea. In addition my pressure settings were low.

What kept me going and sticking w/the PAP were this forum AND insisting on a machine w/data reporting capabilities. Mine was a Resmed S8 Elite so I could access the easiest to understand stuff right on the LED screen which is easy to read. Of course, I had to purchase the software and reader out of my own pocket. (Insurance almost never pays for software and readers). Curiosity killed the cat, you know. The software gives even more data. So I had the added incentive of being able to check my "progress" every morning.

Keep in mind that success w/xPAP therapy can help w/lowering blood pressure AND w/weight reduction. THAT is an added incentive I didn't have.

One of my big problems at first was the "lack of freedom". I was used to waking up 3-4 times a night to go to the bathroom. My first mask was a real PITA to take off and put back on and a hassle to eliminate or reduce leaks every time I took it off and put it back on. Taking the hose off the machine was a PITA too having to carry it w/me and still made for more adjusting to prevent leaks each time I went back to bed. Generally by the time I reduced the leaks I was wide awake. TIRED, but wide awake.

A different mask that I didn't have to disturb the headgear fit or disconnect the hose, that I could just take off and slide back on quickly reduced that resentment and that lack of freedom. And lo and behold one day I realized I was only getting up ONCE a night to go to the bathroom!

Once my sense of freedom was restored I began to notice that while I wasn't feeling any more rested and less tired as I had before starting PAP therapy, I WAS feeling more rested and less tired than during those first 30+ days. And then came that wonderful day when I realized that I was feeling MORE rested and lots LESS tired than before starting PAP therapy.

All along I kept in close touch w/my sleep lab and sleep pulmo. I didn't wait for them to contact me, I contacted them. (My DME's RT was all but useless and in fact a source of irritation and frustration).

So hang in there, keep plugging along. Sleep w/it as much as you can. If you take a nap during the day, use your PAP. At least use your PAP when you first go to bed. At first you may find yourself sleeping w/it half the night and w/o it the second half of the night. Whatever it takes to help you adjust to and accept PAP therapy.

Good luck and God bless!


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kteague
 
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Crying and Frustrated

Postby kteague on Wed Jan 24, 2007 4:19 am

Getting blindsided by a diagnosis you totally don't expect adds an extra element to the adjustment. For many the sleep study was more to confirm suspicions. Then to have to go thru the same ordeal for something labeled "mild" as do those with severe sleep apnea just kinda rubs salt on the wound. If it will help you settle this in your mind so you can get on with the business at hand, your "mild" sleep apnea has caused you to have classic symptoms of its negative effect on your body and mind. Right now the physical and mental exhaustion can make everything seem just too hard to deal with. It won't always feel like this.

This treatment may feel like an uphill struggle, but doing nothing will lead you on a downhill path that you don't want to take. You have suffered enough, and now you have the tools to make your life better. Once you work the bugs out of the mask issues and get used to sleeping with a foreign object on your face, the rewards you experience will be evidence that you indeed needed to do this.

If you haven't already, get a copy of your sleep study (more than just the summary page) and read about what's going on with you. And some of the information it contains could point others here to clues that may be helpful. If you would note your equipment here it would be be helpful also.

You said you are in the second trial week of using this machine - does that just mean the second week of trying to see how this machine and mask work out for you? Or does that mean you are doing a two week trial on a machine that is supposed to determine what your pressure should be?

And welcome to the forum. May the support you find here be just what you need as you begin to get your life back.

Kathy

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Postby pedroski on Wed Jan 24, 2007 4:44 am

now I'm feeling resentful at the thought that I can never sleep like normal people do


Gidday Darth,

Life isn't fair and we have to make the best of the hand we are dealt. It's actually good news that you have been diagnosed with sleep apnoea, because you can now start to address some of the things that may have stopped you losing weight, lowering blood pressure etc.

Undiagnosed sleep apnoea causes a whole bunch of problems, so you're on the way up.

While you may feel resentful at the moment about having to wear a hose to bed, in time you will come to love that hose because of the benefits you will notice if you stick to it long enough.

Use the forum to ask questions and find answers, it will really help you.

Good luck,

Peter

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Re: crying and frustrated

Postby OwlCreekObserver on Wed Jan 24, 2007 6:05 am

d.vader wrote:Hi,
I'm going into my 2nd trial week using this machine and mask provided by the doctor. I'm new to all this and don't really know all the apnea lingo. I have mild sleep apnea. And I'm not feeling hopeful at this point. Can mild sleep apnea really affect your life that much? I went into the sleep study because I suffer from terrible migraines. I wasn't expecting that they would find anything wrong with me. I was surprised when all this came about, and now I'm feeling resentful at the thought that I can never sleep like normal people do. But yet, I'm tired all the time. I'm depressed, forgetful, overweight with high blood pressure. I've struggled with my weight for so long, but I'm so tired all the time that the thought of exercise is insane to me. And that makes me feel lazy....it goes on and on. I feel like if I don't give this a chance then I'll suffer. And if I do, well this is suffering too.
I started out on the swift mask? I think. I just traded it in today for one that covers the nose and although it's much quieter, I started crying laying there in it. The pad that goes around my nose sticks to my face and I hate it. It's like my face is sweating where it sits. I'm just so frustrated and I'm not even sure if this is worth all this? I don't feel any different. I'm sleeping worse, not better. I need guidance from others because I feel like I'm so alone in these feelings.

_________________


You are not alone on this and your feelings are very understandable. Even after eight months, I still have some dark days (or is it nights?) with this stuff.

There are those who adapt right away to having this foreign object stuck to their faces at night, but many of us just have to tough it out. Even after eight months, I still have some very short and uncomfortable nights of sleep every now and then and I doubt that that's ever going to change. But I can tell you that, overall, it does get better.

I think it helps to view this as you would any other beneficial thing that you do for your health. For example, there are an awful lot of folks who take medications for high cholesterol, hypertension, and other conditions. There's nothing "normal" about gulping down a handful of pills every day -- it's a pain, actually -- and there can be some unpleasant side effects with some medications. But most people continue treatment because the alternatives just aren't acceptable.

CPAP therapy is sort of like that because you're treating a condition that you have no real control over without some help. Losing weight might help some, though it didn't help me enough to avoid treatment. You have to remember that low levels of oxygen brought on by sleep apnea can do serious damage to your vital organs, just like hypertension and high cholesterol do.

And I wouldn't put too much emphasis on the fact that your test showed you to have "mild" sleep apnea. I was also diagnosed as mild (19 events per hour) and I tried that argument with my sleep doc. He said that even mild apnea can result in serious consequences over time.

All I can suggest is that you hang in there and eventually you will notice little improvements in your life. I find that my mind just seems to be a lot clearer now than before, though my wife might argue with that conclusion. I still dislike the hassle of having to go through the same stupid steps of getting everything hooked up and running every night but, like wearing arch supports in your shoes, I've sort of gotten used to it.

For me, snoring was always a big problem, especially when my job required me to travel all over the world. Morning comments from my colleagues who had rooms next to mine were almost as painful for me to hear as my snoring was for them. I no longer travel much, but snoring is no longer an issue, except for the fact that my wife now has to have a fan or some other background noise at night so she can sleep because she'd spent many years listening to my rattling the windows at night.

I apologize for rambling on for so long here, but I really hope that you at least give yourself a few weeks to get used to things. You'll eventually find a way to make your mask work for you, most of the time anyway, and every now and then you'll notice little improvements in your general lifestyle. For some of us success is measured in inches instead of miles, but those small victories are still pretty sweet.

Please don't give up. You can do this. We're with you.

OCO


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blarg
 
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Re: crying and frustrated

Postby blarg on Wed Jan 24, 2007 6:41 am

d.vader wrote:I'm just so frustrated and I'm not even sure if this is worth all this?


It definitely was for me. I'm only going to spend about 2 minutes on the "kids in China have no _______" so here goes.

There are so many worse things to be diagnosed with. What you have only means that you have to change your behavior at night time, when you're by yourself or with someone you love. There are SO many worse things to have affecting your life. All you have to do is learn to sleep with a hose strapped to your face.

And YES, mild sleep apnea really CAN cause that much damage.

It seems hard, but you deserve to start sleeping like "normal" people. "Normal" people breathe while they sleep. Sleeping with a cpap will make you feel more "normal" than you do now if you give it a chance. :-)

It also sounds as though you don't like your mask. Don't forget that there are LOTS of masks as well as LOTS of machines, and the right combination of the two WILL work for you. Just give it time. Telling your doctor/RT about your current situation and letting them do something about it doesn't make you a bad person, it makes you a responsible patient.

You're worth it.


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Postby Restless on Wed Jan 24, 2007 8:48 am

Please hang in there! I just started my ordeal last night and right now am tired, pissed off at the world, worried about never being able to adjust to this equipment. But I am going to press on. We are in this together!

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Re: crying and frustrated

Postby Guest on Wed Jan 24, 2007 8:54 am

d.vader wrote:I need guidance from others because I feel like I'm so alone in these feelings.

In addition to all the other good advice you've gotten, I'll mention that dreaming normally is another benefit of the therapy. I have "mild" sleep apnea. too. I discovered, as have many others here, that one of the real benefits of the treatment is being able to dream normally again. Instead of having dark dreams brought on by the continual breathing crisis bouts, I found that my dreams turned much more pleasant, which in turn affects how I feel during the day.

Good luck. Don't be afraid to modify your therapy. Nearly all of us here have found it necessary to "fix" our therapy in one way or another. Many of us have had to go through a handful of masks before finding one that works. Many of us have tried more than one machine. Keep at it.

Regards,
Bill

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Postby KeziasPurr on Wed Jan 24, 2007 8:56 am

A little off topic........ I too am on my second week of bipap therapy. I too can't sleep worth a darn and I'm not energized during the day at all. One good thing is; I'm not worse.........just the same. I know that bipap is good for me and my health and I'm motivated to keep using it, all the while hoping that it gets easier to sleep. I can definitely relate to Vader, though. When I'm laying in bed at night staring at the ceiling with a hose protruding from my nose I often find myself second guessing my decision to put it on another night. Thus far, I've kept it on all night. I only hope it will get better.

One of my concerns is, is that I don't have a machine that has a card reader or software. Resmed does not market their software to consumers. At least not for the VPAPIII. Since I'm in my 30 day trial period, should I ask for another machine so I can monitor my own progress rather than having to lug my machine into the DME each time? Is it worth it? I like my machine. It works just fine.......... But it seems that most people here in the forums read their own data. I'd like to be able to read mine. Any thoughts?


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Postby Goofproof on Wed Jan 24, 2007 9:17 am

KeziasPurr wrote:A little off topic........ I too am on my second week of bipap therapy. I too can't sleep worth a darn and I'm not energized during the day at all. One good thing is; I'm not worse.........just the same. I know that bipap is good for me and my health and I'm motivated to keep using it, all the while hoping that it gets easier to sleep. I can definitely relate to Vader, though. When I'm laying in bed at night staring at the ceiling with a hose protruding from my nose I often find myself second guessing my decision to put it on another night. Thus far, I've kept it on all night. I only hope it will get better.

One of my concerns is, is that I don't have a machine that has a card reader or software. Resmed does not market their software to consumers. At least not for the VPAPIII. Since I'm in my 30 day trial period, should I ask for another machine so I can monitor my own progress rather than having to lug my machine into the DME each time? Is it worth it? I like my machine. It works just fine.......... But it seems that most people here in the forums read their own data. I'd like to be able to read mine. Any thoughts?


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Postby Misterdux on Wed Jan 24, 2007 9:22 am

Hang in there! I was diagnosed with sleep apnea 17 years ago and tried to alleviate it with my diet and not eating allergic foods or eating heavy late in the day. I tried a mask (circa 1990) and gave up and just tried to live with the apnea for the next 17 years. It kind of receded into the background yet I can look back on all the symptoms over the years with regrets for my poor health.

I worried about my health and diet for many years and this past summer it all imploded. I made several trips to the local ER with atrial fibrillation and was hospitalized three times in the fall - once for a full cardiac workup, once for a severe gastritis (stress induced I believe) and once for what we now believe is a generalized anxiety disorder. This last one was between my first sleep test and the three week wait to get back to the lab for my titration. They hospitalized me to get me some oxygen at night and tinker with my heart meds. I was frantic about getting titrated and onto a system.

Then I started feeling "numb" all over during the day - especially in the morning. I wanted to attribute that to the apnea and some kind of oxygen or CO2 imbalance but I think the doc is right and my anxiety level gets the best of me. I am taking some meds to reduce the anxiety.

Been on a CPAP and now an APAP for 6 weeks. Wake up three or four times a night to check the clock and recently to rip off the mask and gasp for air once or twice.

However last night I slept through except for one break to take a leak around 2 AM. Using a full face mask as I have spring time allergies that block my nose so I am getting used to the big mask in advance.

I am planning on my apnea reducing, gaining more energy during the day, reducing my episodes of erratic heartbeats, stuffing the anxiety back where it belongs and getting on with life. I hope you can be patient and do the same. God Bless, Dave


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Postby cougar0020 on Wed Jan 24, 2007 9:33 am

Hello!

I am in the same situation too. I have had my CPAP machine for about 3 weeks now. I am on my second mask, second chin strap and can't keep it on for more than 2 hours a night. I have no idea if this is normal, but the only way this is working for me is to ease myself into the whole process. Hang in there and keep trying. This forum is a huge help!

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Postby snorin747 on Wed Jan 24, 2007 9:34 am

You are not alone.

I am just starting out. I can tell how frustrated I have gotten in the night by where I find the mask when I wake up. But what keeps me sticking with it is that morning I woke and still had my mask on.

If you have problems post them here. Chances are that someone else has encountered the same thing, but they may even have a solution that might work out for you.

-747

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Postby cougar0020 on Wed Jan 24, 2007 9:48 am

I agree with you about what keeps you going. I lasted 4 hours one night and I have never felt better the next morning. I was so much more alert and did not feel sleepy during the day. That is what keeps me going...if I felt that good on 4 hours then I can only imagine what I would feel like after 8 hours!

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