POS thing!

[madwax]

I'm so fed up. I've had this thing for a few months now. I don't know if it's me or what but I can't tell it's doing anything to help. I feel more tired after waking up 5 times a night fighting with this thing. The noise keeps me awake. Sounds like water is sometimes trapped in hose (not overfilled). It is trying to kill me by wrapping around my neck. I don't care how high I keep the water on I wake up like I've been in a desert with no water for a week. My tongue is sticking to the roof of my mouth, my sinuses are sore from being so dry, and my lips feel like they haven't touched a sip of water in days. I have to put it on so tight so it doesn't fall off that I have red marks and my forehead and mouth area are sore. Half the time I apparently take it off anyway as it is usually unsnapped next to the bed. I would have already quit wearing it if it wasn't for my wife insisting I wear it because it keeps my snoring down. I never asked for this but one day the doc looked down my throat, commented how tight my airway was, asked if I snore (yes) and sent me for a sleep study. I failed. F ME. What do I do? I question if I even have apnea. It has never bothered me before. I think if I quit breathing I would know. FYI I'm on my phone now after two hours of wearing this and not being able to sleep.

[mgaggie]

Are you actually interested in getting answers? Or are you just having a whinge?

You sound like a two-year old who isn't getting their own way

[49er]

Are you actually interested in getting answers? Or are you just having a whinge?

You sound like a two-year old who isn't getting their own way

Hmm, good thing I didn't post what I was really thinking the other day or I would have sounded like a two year old also as my thoughts were similar to this poster's. Instead, I went on a horrible junk food binge to drown my sorrows. But oh, that food was so good.

Madwax, I so relate to your frustrations as they are totally understandable. What you might want to do is use the link in my signature to fill out your equipment profile so members can better tailor their response to your situation.

And if you could post more information about your diagnosis and sleep study, that would be helpful such as the severity of your apnea.

Hang in there!

49er

[mgaggie]

49er I'm all for helping people if I can. But from what the OP has written it appears to me that he isn't looking for help, FGS they are even questioning that they have sleep apnea. They are in a boat on the river DENILE and unless they are prepared to step off the boat themselves and want help, I'm not going to waste a whole heap of energy on them.

I'd rather use what energy I have for people who want help.

[49er]

49er I'm all for helping people if I can. But from what the OP has written it appears to me that he isn't looking for help, FGS they are even questioning that they have sleep apnea. They are in a boat on the river DENILE and unless they are prepared to step off the boat themselves and want help, I'm not going to waste a whole heap of energy on them.

I'd rather use what energy I have for people who want help.

mgaggie,

I understand what you're saying but it was this OP's first post so the feelings expressed are normal in my opinion. He/She also might not have been clear on what to ask due to the newness of the situation.

And questioning your diagnosis is quite normal, as this happens constantly with medical conditions in spite of the evidence that tells you it is accurate. It is part of the process in my opinion in accepting your condition.

49er

[Julie]

Hi - there are many ways to help you sleep better with the equipment, that's why we're all here. You can address each problem (all common) and overcome without a lot of drama. The hose thing - you can e.g. have it go back up over the headboard (if you have one, leaving enough room for you to turn, etc., or you can get a Hose Buddy (Google it) like a little IV pole that keeps the hose up and away as it swivels when you turn, so it doesn't tangle in bedding, etc. etc. and some have put in a 'sky hook' on the ceiling to hold it away. Not rocket science.

If your mouth is dry in the morning (or before) then you might be a mouth breather once asleep (no control over it any more than the rest of us have), so should try out various full face masks - they don't cover your face, just extend from the nasal mask to cover your mouth and let you breath into it without losing that air to the breeze.

If your mask needs to be 'too tight' then it's either the wrong one for you (we all go thru various ones at the beginning til finding the right one for us), or it was not fitted properly, or you got the wrong size, etc. etc. Our faces are all very different structurally and when lying down change even more so it's important to get the right mask!

Also, if you have a good machine it should be able to give you data to look at on your computer (we'll explain that if you don't have a good one) to see how you're doing... whether cpap is addressing e.g. mask leaks, or snoring, or lowering your apneas successfully, which is why it's important to fill out your Profile (User Ctl Panel under the logo) with the FULL name and model # (under your machine - but DON'T tip it til emptying water out - and mask. Those will appear autom. when you post so we know what you're working with and can advise better.

Your bathroom breaks will go away once you're getting proper treatment = happens to all of us - so give things a chance and work with it - it's for you, not your MD, not your mother, and not even us!

[zoocrewphoto]

49er I'm all for helping people if I can. But from what the OP has written it appears to me that he isn't looking for help, FGS they are even questioning that they have sleep apnea. They are in a boat on the river DENILE and unless they are prepared to step off the boat themselves and want help, I'm not going to waste a whole heap of energy on them.

I'd rather use what energy I have for people who want help.

This is how a lot of people start. Accepting cpap is a huge change, often a loss in out minds (loss of freedom, loss of normal sleeping, etc) so we go through the 5 stages of grief. One of the stickies at the top of the page is dealing with change because this is so hard.

I spent at least 10 years in denial before I went in for the sleep study. I knew I had it, but I tried to convince myself that it wasn't a big deal.

Rather than attack people when they join, even if you think, here we go again, try to remember that they are really struggling. All they need is a negative response to throw their hands up and quit. Their doctor probably isn't helping. Their DME is probably horrible (most are). So, we are their best shot at keeping them from quitting and helping them to become successful.

To the original poster, it will help us to help you if you can tell us which machine, what pressure settings, and what mask you are using.

If you are using ramp, that may or may not be a problem. Some people find that the pressure starts too low, but don't know that is the problem. The mask should not be too tight. It is either not fitted properly, or not the right mask for you. Unfortunately, the professionals often tell people to tighten the mask when that not is not the solution.

For dry mouth, if you are using a nasal mask, you probably need a full face mask that covers your mouth too. Breathing through your mouth while using a nasal mask will be very uncomfortable, lose all therapy, and cause a dry mouth.

As for the diagnosis, most people have no idea how many times they wake up a night because those events are too short to remember. My perception was about 3-5 times per night. My reality was 79 times an HOUR. I had to learn that this wasn't just about waking up at night. It was about my oxygen level going down, causing damage to my organs. And also adrenaline being released every night, causing my blood pressure to rise, and also causing damage.

Some of my improvements were noticeable in the first couple weeks (fewer bathroom trips, nightmares gone, less grumpy, etc). Other improvements took longer (feel more energy, blood pressure improving, falling asleep faster, etc)

This treatment DOES get better. It has a steep learning curve with a lot of issues to figure out at the beginning, but it does get better, and we will help you. Ask lots of questions and keep at it.

[49er]

49er I'm all for helping people if I can. But from what the OP has written it appears to me that he isn't looking for help, FGS they are even questioning that they have sleep apnea. They are in a boat on the river DENILE and unless they are prepared to step off the boat themselves and want help, I'm not going to waste a whole heap of energy on them.

I'd rather use what energy I have for people who want help.

This is how a lot of people start. Accepting cpap is a huge change, often a loss in out minds (loss of freedom, loss of normal sleeping, etc) so we go through the 5 stages of grief. One of the stickies at the top of the page is dealing with change because this is so hard.

I spent at least 10 years in denial before I went in for the sleep study. I knew I had it, but I tried to convince myself that it wasn't a big deal.

Rather than attack people when they join, even if you think, here we go again, try to remember that they are really struggling. All they need is a negative response to throw their hands up and quit. Their doctor probably isn't helping. Their DME is probably horrible (most are). So, we are their best shot at keeping them from quitting and helping them to become successful.

To the original poster, it will help us to help you if you can tell us which machine, what pressure settings, and what mask you are using.

If you are using ramp, that may or may not be a problem. Some people find that the pressure starts too low, but don't know that is the problem. The mask should not be too tight. It is either not fitted properly, or not the right mask for you. Unfortunately, the professionals often tell people to tighten the mask when that not is not the solution.

For dry mouth, if you are using a nasal mask, you probably need a full face mask that covers your mouth too. Breathing through your mouth while using a nasal mask will be very uncomfortable, lose all therapy, and cause a dry mouth.

As for the diagnosis, most people have no idea how many times they wake up a night because those events are too short to remember. My perception was about 3-5 times per night. My reality was 79 times an HOUR. I had to learn that this wasn't just about waking up at night. It was about my oxygen level going down, causing damage to my organs. And also adrenaline being released every night, causing my blood pressure to rise, and also causing damage.

Some of my improvements were noticeable in the first couple weeks (fewer bathroom trips, nightmares gone, less grumpy, etc). Other improvements took longer (feel more energy, blood pressure improving, falling asleep faster, etc)

This treatment DOES get better. It has a steep learning curve with a lot of issues to figure out at the beginning, but it does get better, and we will help you. Ask lots of questions and keep at it.

+100

49er

[ChicagoGranny]

I'm so fed up. I've had this thing for a few months now. I don't know if it's me or what but I can't tell it's doing anything to help. I feel more tired after waking up 5 times a night fighting with this thing. The noise keeps me awake. Sounds like water is sometimes trapped in hose (not overfilled). It is trying to kill me by wrapping around my neck. I don't care how high I keep the water on I wake up like I've been in a desert with no water for a week. My tongue is sticking to the roof of my mouth, my sinuses are sore from being so dry, and my lips feel like they haven't touched a sip of water in days. I have to put it on so tight so it doesn't fall off that I have red marks and my forehead and mouth area are sore. Half the time I apparently take it off anyway as it is usually unsnapped next to the bed. I would have already quit wearing it if it wasn't for my wife insisting I wear it because it keeps my snoring down. I never asked for this but one day the doc looked down my throat, commented how tight my airway was, asked if I snore (yes) and sent me for a sleep study. I failed. F ME. What do I do? I question if I even have apnea. It has never bothered me before. I think if I quit breathing I would know. FYI I'm on my phone now after two hours of wearing this and not being able to sleep.

Your underlying problem is you are ignorant of the CPAP process and sleep apnea. Most people start out this way.

Hang around and get a good education. You will find out there are solutions to the problems you mention and you will develop an understanding of your condition and what to do about it.

Educating yourself takes some time, so don't expect to get there in one thread.

[DoriC]

This is what this forum is all about, outstretched hands to a struggling newbie with some words of encouragement and valuable early suggestions. It's easy to hear the panic the OP is feeling, troubles me, and hopefully he/she will realize he's not alone in this sleep apnea world. It's obvious he's having humidity problems, mask/hose problems and his settings are probably set wide open, all the usual suspects. MADWAX, stay with us, read, ask questions and answer the questions we ask of you. Guess what, you may wind up being one of our many, many success stories! Keep us posted.

[Todzo]

I'm so fed up. I've had this thing for a few months now. I don't know if it's me or what but I can't tell it's doing anything to help. I feel more tired after waking up 5 times a night fighting with this thing. The noise keeps me awake. Sounds like water is sometimes trapped in hose (not overfilled). It is trying to kill me by wrapping around my neck.

You are not the first nor will you be the last to be frustrated during your use of xPAP. Your issues are real and not your fault.

I don't care how high I keep the water on I wake up like I've been in a desert with no water for a week. My tongue is sticking to the roof of my mouth, my sinuses are sore from being so dry, and my lips feel like they haven't touched a sip of water in days.

Probably your respiratory control system gain is too high.

I have to put it on so tight so it doesn't fall off that I have red marks and my forehead and mouth area are sore.

Many agree that getting the right mask and learning how to use it well is a big key to making xPAP work.

Half the time I apparently take it off anyway as it is usually unsnapped next to the bed.

I see this as yet another indication that your respiratory control system gain is too high.

I would have already quit wearing it if it wasn't for my wife insisting I wear it because it keeps my snoring down.

I started CPAP in a place where several men were in bunks together. It was comforting to know that they would not be inspired to kill me so that they could sleep without the interruptions caused by my snoring.

I never asked for this but one day the doc looked down my throat, commented how tight my airway was, asked if I snore (yes) and sent me for a sleep study. I failed. F ME. What do I do? I question if I even have apnea. It has never bothered me before. I think if I quit breathing I would know. FYI I'm on my phone now after two hours of wearing this and not being able to sleep.

So lets start with some basics that you can do right now:

I mentioned respiratory control system gain. I could have called this upset breathing reflexes. XPAP adds pressure to the air put into your lungs. It is easier to breath in. Effectively this increases the gain of your respiratory control system. The output of this system is the effort signal sent to your breathing muscles. With the added air pressure adding to the inspiration muscle effort things tend to move too far too fast.

What you can do about this right now starts with spending some quality time with the machine during the day. Start in bed without the machine thinking about things you love for several minutes and then noting how you are breathing. Note the volume and cadence. Then put the mask on and see if you can match that volume and cadence. Then spend some time with the mask on while watching light TV, reading a book, at the computer, some light distraction. Do this for a week or three. You need to develop new breathing reflexes and doing so with your mind in the conscious state is likely to get you much further faster than when you are not conscious.

But then lets add some exercise which will work out the breathing reflexes. Aerobics at whatever level you are. If you are well in shape you might add some 85% of maximum heart rate interval training.

Anything that you can do to reduce or better control stress is likely to help.

Dr. Stasha Gominak has noted that many of the areas of the brain which are used for respiratory control are very much affected by D3 levels. Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health.

I have come to believe that OSA is a way that our body uses to tell us to take better care of ourselves. I have also found out that I actually know very very little about taking care of myself. Working with a dietitian for several years and with a Personal Trainer at the gym I have started to change that. I think that learning to eat well and move well needs to be a life long endeavor.

[Todzo]

[oppressive statements eliminated due to lack of compassion and helpfulness]

feel free to not particpate in this thread

[Guest]

I have no idea what machine I have and the only thing I comprehended that the doctor said was my O2 level went to 89 percent. I thought that was still pretty good. I never thought anything was wrong before. The doctor sent me for tests (free) I got this free machine that was suppose to make me sleep more sound and feel more refreshed. I'm still waiting on that part. I would love to wake up bright eyed and bushy tailed but so far this is no different. Again my wife likes it because she says I don't snore. My thing covers my mouth and nose. The way I understand it they preset the pressure and I have humidity turned to max.

[Rustsmith]

I never asked for this but one day the doc looked down my throat, commented how tight my airway was, asked if I snore (yes) and sent me for a sleep study.

Since you do not know the specific results from your sleep study, your doctor's comment may indicate that you have UARS (Upper Airway Restriction Syndrome) rather than Obstructive Sleep Apnea. Both conditions are treated using xPAP, but the success with UARS is not as pronounced nor generally as quick as with sleep apnea. If you have UARS, you just need to stick with it. You will see improvement over a period of weeks, but it may be so gradual that you will not immediately notice the change until you think back to how you slept prior to treatment.

Also, UARS patients tend to struggle a bit more in the beginning with adapting to the mask. Some research indicates that our nervous systems are a bit more sensitive and so we struggle with adapting to the new sensations both on our faces and in our respiratory tracts. But that goes away as you grow used to the treatment.

[Julie]

Well find out the complete name and model of your machine and mask and then tell us what they are. We can only help if we have something to work with. You're an adult, competent enough to do that much in your own interests.