I want my life back....

[cpnmikes]

Hello all... i get frustrated when i read post from people who have slept the night through since day 1 (they have no idea how lucky they are). I have had my machine now for almost a month and in that time I have had two nights where i slept most or all of the night with the machine, and I felt far better the next day than i had in a very long time. However, the rest of the time I just cant fall asleep with the mask on, even though i dont go to bed until I am dead tired, I lay there and lay there and as soon as i begin to doze i come awake again,,,, when i do finally fall asleep i am always awakened later in the night by a mask leak caused by my movement in bed, which is my own fault I know, and then the cycle begins again, but by this time I am so desperately tired that i take the machine off just to be able to get some sleep. To clarify, in that period I had one week of vacation where i didnt take the machine, and most of another week with a bad cold and i couldnt use it with all the nastiness.

I know the machine works for me, if those two nights are any kind of indicator, and I want to feel that way all the time, but I need to know that someone like me, who is really NOT adapting well to this, if I keep trying, will I ever get it right? I have a new resmed M series auto adjusting machine with humidifier and i bought the heated hose as the air was so cold... but even that didnt help much. I feel I am more exhausted now than I was pre-cpap...

I couldnt afford a sleep study, no insurance, so the doctor made arrangements to send me home with this machine, which records, and then they will read the card and determine what pressure I should have, sort of an at=home sleep study. I have a good resmed full face as im a mouth breather, and its not that uncomfortable. I got the impression that the doctor was not impressed with auto adjusting machines, but reading here tells me they are the cream of the crop and most want them, and that confuses me more than a little. I think due to cost they are going to give me a standard basic machine, they said for about $250, once i come back in, with a set pressure. I am worried that if i cant adjust to the auto machine, how the heck will i be able to adjust to the basic one which has a constant pressure and doesnt reduce pressure for exhaling? My appointment is later this week, I see that this resmed machine is a couple of grand, and I am unsure what to do. Should I just insist on the better machine and just put it on a credit card? Will that make my chances of compliance better? I dont even know how they will have any real data to use with my lack of compliance so far... I would feel very alone without this forum and others like it to read.

My question is have any others had similar very trying experiences early on and eventually overcome? I really want feedback on the machines, and what opinions are regarding my options on equipment. I want to feel everyday like i felt those two days I made it through the night.

One final note... the medical equipment people were almost useless... gave me no advise, nothing.. just gave me the machine, showed me how to turn it on and put water in it, and made a return appointment..

[Babette]

It took me 8 weeks before I could sleep all night every night with the mask. I have to try 6 different masks before I found one I could live with. I had to go on Provigil to fight the overwhelming tiredness and keep my day job. I ripped the mask off, I slept whole nights without it, I raged, I cried, I fought.

It was a struggle for me, and it is a continuing journey. I am sleeping well now, and many things in my life have improved. But it's not CURED. It's always going to need attention.

Try another mask. There are several free mask test drives out there so you can try masks before buying them.

viewtopic/t35991/Mask-Test-Drives--Try- ... uy-it.html

Good luck!
Barbara

[BeanMeScot]

You can get a machine from someone other than the DME. The DME is the single most expensive way to get one. However, if you get one on your own, you are going to have to take charge of your treatment because you will only have us and yourself to depend on. You can find cheap machines on Craigs List, here at CPAPAuction (with a prescription), or some online sites have good discounts on new ones. The only issue with something like Craigs List is you are dependant on what people are selling. If you get a new one online, you might pay more but you will get what you want. Frankly, the people on Craigslist often paid the DME prices so they think they can get more for the machine than it is really worth.

[Jason S.]

IMO, you need to lower your anxiety level and you can perhaps do this by lowering your expectations. Set your goal at getting through the night with the mask on. Don't worry about amount of time slept or the mask leaking. I think its unreasonable to think you are going to sleep through the entire night without waking, even if your mask wasn't leaking. Don't worry about waking up to leaks. Adjust the mask, go back to sleep. If you keep the mask on all night, get therapy, and dream, thats a good thing isn't it?

[SharkBait]

cpnmikes,

I'm thankful every day that I took to this almost immediately, due mostly to two things...

1. This site. I researched the dog out of this stuff and came up with what I feel like are the right machine and the right mask from the beginning.

2. I sleep. To qualify that, I only slept about 5 hours at my sleep study, but for the most part I sleep. I've never had problems going to sleep with the light on, the TV on, the kids in the other room playing... I strap on the stuff, lose myself in my book and 20-30 minutes later I'm nodding off.

Anyway, keep researching. A ton of it is mask. I have some mouth breathing problems, I use a chin strap and tape. I haven't used the tape in about 5 days now as I'm slowly training myself to keep the mouth closed and the tongue at the top of my mouth. But I will most likely wear a chin strap for the long haul.

But know one thing. If I couldn't get away from the tape I would CONTINUE TO TAPE MY MOUTH for the rest of my life or until I found a mask that suits me that didn't require tape. That's how strongly I feel about the right mask. I put a UPS on my equipment and as soon as the power goes out, the backup kicks in and STARTS BEEPING. This will wake me up every time. So there's no downside to taping IMO except the whole creepy feeling (that I can live with and actually kind of enjoy...).

A very high insurance deductible was a blessing in disguise. I ordered all my "top of the line" stuff off of cpap.com (REMEMBER: cpap.com just needs your prescription to say CPAP and they'll sell you CPAP or APAP) for under a grand. I ordered different masks and got the insurance hoping like heck that I wouldn't need it. I sent two masks back and kept the Swift LT.

Keys for me:

Exhale relief
Swift LT
An attitude that this is not optional and that I'll read all night if I have to. Fortunately that has never been the case -- not even close.

GET THE RIGHT MACHINE AND THE RIGHT MASK!!! Good luck!

[TheDreamer]

I've been at this 3 months...and it did take over a month before I was able to get to sleep and sleep through the night. Though I did have to stop for a while due to staph infection on my nose bridge. During the time I was started taking 1mg of melatonin to get to sleep. I continued to take this after I resumed use of CPAP.

I found that it was allowing me to get to sleep faster....though at first I was still getting up every 2-3 hours to use the bathroom. Then at some point I would occasionally wake at night, but I didn't have to go. During this I was also working on leak issues. I found that I could have big leaks, but it wouldn't wake me up immediately....it was something else that would wake me up later. Sometimes the leak resolved itself before I woke up, so I wouldn't have known if I didn't look at my data. Like once there was a large leak for 45 minutes....and then it fixed itself for an hour....when I then woke up because I needed to go.

Then I found that I could sleep through the whole night....and at least I didn't need to make a bee line for the bathroom upon waking.

So, then I stopped taking the melatonin....because I wanted to know if I was sleeping because I was getting better or because of the melatonin. The first couple nights it was hard to fall asleep. But, eventually I was able to get to sleep and most nights I can make it all the way through. I might wake for a bit now and then....though I attribute that to probably some transient noise had occurred and woke me up. I do live next to the main street that goes to the hospital....plus I don't think the neighbor upstairs ever sleeps at night.

OTOH, I'm still waiting for the awake feeling. And, not have the occasional afternoon and/or evening where I'm fighting to not nod off.

Saw my doctor yesterday, he said to give it more time...though he's also checking for other reasons....

The Dreamer.

[birdshell]

It would be easier to help you with your mask if you filled in your registration information with your machine, mask, etc. It helps most to have it in written form, as the pictures don't always give enough detail. (For example, almost every ResMed looks the same from the outside, but the features can vary.) To register your equipment, just go to the "User Control Panel" to the left in the light blue bar above. Click the word link, then choose the "Profile" tab, then the menu on the left hand side of the page has a choice for equipment. Choose that, and we are better able to help you with suggestions.

Secondly, Our Wisdom, with the Yellow Lightbulb above it, has some of the best postings from the forum. Help for New or Struggling Users might at least hold some hope for you. Besides offering hope, the link to Rested Gal's links contain one on various mask fixes in her LINKS to Lab Rat Trophy awards .

The search feature is also very useful. However, when I was new, I may not have chosen the right words for a search. So, may I suggest checking out the "Chatting Live" chat room link. It is at the top of the page in the dark blue narrow banner line to the far right, by the white conversation balloon. If you rest your cursor there, you will even be able to see who is in the chat room before joining it. We may be chatting about off-topic things, but we simply are filling time until there is some question. Please feel free to interrupt!

Other that the above resources, there isn't too much to suggest at this point--until we know more about your equipment. We will gladly help you with any problems you encounter. Further, I would like to say that in my nearly 3 years of coming to this forum, I have noticed that the single most important factor in making CPAP work is: THE DOGGED DETERMINATION AND DESIRE TO SUCCEED!!!

Karen,
Who is VERY glad that she did not give up

[TSSleepy]

If they are doing an "in-home titration" then they probably have your machine set up for a very wide range? Like 4-20?

I did not sleep well with a large range like that. The low end was too low, so it felt stifling and hard to breathe. As I drifted off to sleep, I'd start to snore because the pressure was too low and I would bounce back awake.

Then, later in the night, the machine would ramp the pressure way up and my mask would start leaking. It was horrible.

If you go back and they give you a straight CPAP based on your trial period, it might be easier to get used to. It will probably feel better at the start of the night and you'll be able to adjust your mask to the actual pressure you'll be sleeping with. If you end up with an APAP, you can keep the range much tighter, once you know what pressure you need.

I know it all seems like a HUGE annoying mess now, but once you get things customized (the right pressure, right mask, right humidity, etc)...it will get better.

[cpnmikes]

THANK YOU THANK YOU THANK YOU... everyone who replied so far... I am going to fill out the info after dinner on my machine and mask.. although im not sure what mask it is except that im fairly sure its a resmed,, as the medical equipment company at the hospital seems to be a resmed dealer. She just walked over to a cabinet and got one out and handed it to me .. no packaging, and said, this should fit you!. My head was spinning when i walked out of there i thought i would get just a little more guidance from them.

more later...

[Linus]

Stay with the auto machine. Limit the pressure levels close to your titrated pressure. The limited fluctuations may help with comfort. Later on as conditions change you can modify the auto to your needs. If you need to later on maybe one of us can read your card if you do not want to get the software right away and give advice.

[ww]

Hi cpnmikes. Spend a little time on cpap.com as there are several inexpensive and good auto machines including the Intellipap. I sent this message to another user and maybe some of the private pay data in it will help you determine if you can afford some high quality equipment.

Ask the tech at the sleep lab to fit you with a ResMed Ultra Mirage Full Face Mask in your size with the correct cushion and be sure it fits your face correctly. Watch your co-pay as you can buy this mask as a private pay for $139. Also have him check the fit of the ResMed Quattro Full Face Mask if that have it. The private pay price for this mask is $155.00. Be sure to have them fit you properly in case this is the next mask you want.

Also have them fit you in a ResMed Swift LT mask if the full face mask does not fit you properly, but you will need to have both a full face mask and a nasal/nasal pillows mask eventually. This mask is a little smaller but only works if you can keep your mouth tightly closed after you go to sleep. (I couldn't).

If you go through the titration process, have them give you a copy of your prescription signed by the sleep doctor. Also request a copy of your sleep report before and after titration. Then ask for the Scored Data Summary Report w Condensed graphs. It will take them a week or so to get these reports unless they can print them out of their computer for you.

If you require a CPAP, be absolutely sure they give you an Auto Adjusting CPAP machine with Humidifier from a reputable manufacturer such as ResMed or Respironics. These are ALL fully DATA CAPABLE so that you and your doctor can keep up with how well your therapy is going. The Auto Adjusting machines run less than $50 more than the standard data capable machines and allow you and the doctor to determine if your pressure needs change over time and also if your pressure needs change from sleeping on your back to sleeping on your side or stomach. This is a very important consideration and you should not be satisfied with less than an auto machine as it will be 5 years before you can get another one! These machines can also be set up as CPAP single pressure machines at first is that is what the doctor wants to do, but always keep the auto capability available if it is need in the future. Most auto machines will adequately compensate for side and back sleeping in the auto mode if they are simply set to go 2 cm below and 2 cm above the titrated CPAP pressure.

ResMed makes a good machine called the: S8 Autoset II. It includes EPR and Easy Breathe that allow you some relief on exhale. The machine is rated 24db and is one of the quietest on the market from a major manufacturer. Get it with the H4i Heated ResMed Humidifier. Their p/n for this combination is 33150. Find out for sure what your co pay is for this combination as you can buy the entire system as a private pay for $669.00. They also make a non auto that is data capable called the S8 Elite II with EPR Easy Breathe and H4i Headed humidifier is 33062 with a private pay price of $595.00. Not much savings over the auto machine so not a good deal for you or the doctor when you need the auto capability. They also make a NON Data Capable machine called the S8 Escape II (33053-26940) which is a noiser machine and you DO NOT want this one. It has a Private Pay cost of $490 and is not a bargain to you or the doctor as neither of you will ever know whether your therapy is working properly.

A similar machine is also available from Respironice that includes Aflex . It is an auto cpap that is data capable p/n DS510HS and includes humidifier and aflex. Private Pay price is $596.00. The Pro version is data capable but not auto and is the DS400HS with cflex, it is the same thing without the auto and private pay is $555, so is really a poor choice for either you or the doctor. The Plus (DS200HS) is NOT data capable (reports only hours used) and should not be taken under any circumstances! The private pay price is $485 and is a poor choice for you or the doctor as neither of you will ever know whether your therapy is working properly.

Ask for the following accessories:

Respironics pure white 6 ft CPAP performance hose: Private pay price is $10.75 (This is a much more flexible hose than the standard hose)
Respironics Silver Fleece Tubing Wrap Hose Cover for 6 ft CPAP hose: Private pay price is $14.00 (This prevents rainout from the humidifier in your mask on cool nights)

Ask the doctor to turn on the menus where you can read your AHI data each morning from the LED screen.

* Data capable means you can read your mask leakage data and AHI and OAI data each morning when you get up and you can buy a card reader and software if you want to download and read the detailed reports.

[cpnmikes]

Ok.. i entered my machine info in my profile.. as for the mask it only says RESMED on it but nothing else.. seems like a nice mask and it fits ok

there is a sticky note the nurse put on the machine that says the pressure range is 8 to 20.... if that helps

therapy usage 7 day average 1.36 hrs/nite
30 day 2.36

sessions >4 hrs 7 days = 1 session
30 days = 8 sessions

90%pressure 7 day avg 10.6
30 day avg 10.2

system leak 7 day avg 54.5 L/min
30 day avg 40.9 L/min

7 day avg ahi = 2.7
30 day avg ahi = 2.6

therapy hours 76.1
blower hours 82.7
total sessions =8

all this since march 2 with two weeks plus a few days taken out for a vacation and a bad head cold which im still fighting.. not getting any breaks with this at all

is this a good machine and should i try to keep it if i can afford it?

also I always use the ramp function when i go to bed.. im going to try the reading thing tonite see if it works...

[rocketdork]

Let me join in with the others and tell you to stick to it. It took me a couple masks and a while to get used to them before I was able to sleep through the night. I still have trouble falling asleep right away, but I've always had that trouble. I tried melatonin...it kept me awake more and my sleep was fitful and restless...so I stopped that.

Start by trying to determine exactly what it is that prevents you from falling asleep, then why you think you've woken up later. And finally, what it is that gets you to the point of desperation and you take off your mask. Let us know what those points are and we may have some suggestions on how to overcome them.

Just some examples of what I had troubles with at the beginning.

The bridge of my nose hurt, so I had trouble when I first put the mask on, it hurt...then it would get sort of numb and I could fall asleep. Later in the night, I would move, and the pain would return. Solution, I got a different sized mask (same model) and the pain went away.

Leaks kept me awake. I usually lay down on my back, turn to my left side for a while, then turn to my right side and finally fall asleep. The mask would leak when I moved, blow in my eyes and keep me awake. It took several nights of trial and error to get the mask to where it wouldn't leak when I moved. I found that if I put my head in certain positions or moved in a specific way that the mask would stay sealed. Of course, this was after I got the straps and mask adjusted "right".

Leaks woke me up. Again, it was the way the mask fitted me. Over time, I found that moving in a specific way when I turned in my sleep would prevent the leaks, I guess I trained myself to move in that way, and the leaks went away.

I've never really been bothered by the noise of the machine, the blue lights or the hose.

I guess what I am saying is that start by defining what the specifics of the problem are, then work to address those specific problems. I've abandoned the first mask I used and now use the one below. It is much more comfortable and leaks much less than the original mask I had. I feel like the single most important thing to compliance is the fit of the mask...you say yours isn't uncomfortable, but is it comfortable???

I have to say that its pretty cool that your Dr. isn't making you go through the whole sleep study thing. That will save you a ton of $'s. The down side is the other things that can be discovered in a sleep study, like restless leg syndrome or other sleep problems that aren't OSA. Its rare these days that a Dr. will actually take a patients financial situation into account. They are so busy thinking about malpractice, revenue etc, that most won't give you the time of day without charging.

Stick with it though, it does get better, and you WILL get your life back!

[SharkBait]

THANK YOU THANK YOU THANK YOU... everyone who replied so far... I am going to fill out the info after dinner on my machine and mask.. although im not sure what mask it is except that im fairly sure its a resmed,, as the medical equipment company at the hospital seems to be a resmed dealer. She just walked over to a cabinet and got one out and handed it to me .. no packaging, and said, this should fit you!. My head was spinning when i walked out of there i thought i would get just a little more guidance from them.

more later...

Well, you certainly have one of the top machines. Now you need to find the mask for you.

[SharkBait]

is this a good machine and should i try to keep it if i can afford it?

Yes, the machine is a good one. Are you sure about the humidifier? Does yours not have a dial for heat settings?