I Don't Know How Much Longer I Can Do This

[seekingsleep]

I am 41 and I have been tired since I was 20. I have read everything and tried everything to try to figure out why I am so tired and nothing has worked. I have tried light therapy, high protein diet in the morning, supplements, napping, not napping, melatonin, Rx medications...OK, I am sure you have done this too. I am overweight by about 20 pounds but even when I was at a healthy weight I was tired.
A year ago I asked for a referral to a sleep clinic. In January I got to see the only sleep doctor in my community. It took another month for my sleep study at the clinic, another month for the results of severe sleep apnoea (I wake up every 45 seconds on average). From there I had to wait another month to have a sleep test with the CPAP machine. Now I am waiting to go back again for those results. The doctor told me I will need a CPAP machine but he just needs to find the right setting. I am not sure what that means.
I have no problem with getting a machine. I am desperate and will do anything at this point. I am happy to report that I just got extended benefits through my employer and the machine will be covered 100%.
I guess I have lots of questions but the main one is how do I know what machine is a good one. I am interested in anything you can tell me. I rarely travel so portability is not a big issue. My fiancé is a light sleeper so I need a machine that is quiet. Do all machines use water? Is there anything you can tell me that is important and anything I should avoid.

I thank you in advance.

So tired of being tired.

[KSMike]

First, don't give up! You are well on your way to relief, even if you do have a ways to go.

As to a machine, I'm still using one that's one generation back, so I'll let others speak to specific models. BUT - I can almost guarantee that you don't want the one your insurance company or their designated DME (durable medical equipment provider) tries to pass off on you - they're usually the cheapest, noisiest pieces of junk on the market. So do some reading and research here to find out about different models, humidifiers, ability to store/read your own data, etc. Only with that will you be able to take control of your own situation.

The water you speak of is for the humidifier. Most xPAP systems consist of 3 main parts - the machine itself, a humidifier, and the mask. Some machines have nice matching humidifiers, others have chosen to use a different add-on humidifier for various reasons. Most people would be absolutely miserable trying to use xPAP without a humidifier.

The mask is where most people actually have the most trouble for the first few months, because it often requires trying 2 or 3 (or even more) different mask models before you find one that has the best fit for your face. If you buy your equipment from CPAP.com, buy the return insurance with each mask that you try. That way, if one doesn't work out, you have 30 days to return it.

Let me repeat - don't give up!

[crookneez]

Hi, I feel for you.
When I did my sleep test 13 years ago I woke 83 times in my worst hour. My oxygen saturation was so low at times my doc claimed I'd have been turning blue.
I've used ResMed Autoset machines ever since and found them good, and reliable. My most recent is the ResMed S9 Autoset which automatically adjusts pressure according to your needs.
It IS very small for travelling AND very quiet. I don't use the humidifier but many people do it seems and without it the package is very small.
Mask selection is vital too and that is where I'm having issues at present (after 13 years of problem free use)
Good luck my friend, once you get the right combination you'll never look back.

Interestingly, my sleep Doc at the time I was diagnosed, couldn't believe that I didn't suffer from tiredness during the day. It's strange but even though my OSA was quite severe I never felt tired?

[moondoggy]

I guess I have lots of questions but the main one is how do I know what machine is a good one. I am interested in anything you can tell me. I rarely travel so portability is not a big issue. My fiancé is a light sleeper so I need a machine that is quiet. Do all machines use water? Is there anything you can tell me that is important and anything I should avoid.

I'm fairly new to this stuff myself but here's some things I know...... There are different machines for different symptoms so it is hard at this point to recommend a particular machine. That being said if the ResMed AutoSet S9 machine will meet your needs and is available I would recommend this unit as it was recommended to me by a number of members on this forum. The S9, and make sure it's an AutoSet S9, is compact and VERY quiet. Yes, there is a small container that you put distilled water in every night. The water is heated to provide humidity and mine has a heated hose to prevent condensation from building up in the hose. Even thought you don't travel the machine comes in a carrying case that is about the size of a laptop. Another advantage of the S9 is that you can download the data from the chip and review your own progress with either the ResScan software or Sleepyhead software.

As someone may have already told you the insurance companies will only pay a set rate for a CPAP machine so if the medical supply firm can get you into a cheap unit that costs them less than the standard rate they pocket the difference. In my case I was sold on the S9 before I visited with the the provider. The first medical supplier I was going to go with told me that they would tell me what I needed and that is what I would get and then would not even tell me the make and model. Because of their attitude I call another medical supply and the MedTech told me that they offered several major models but they prefer the S9 Autoset because it is best for the patient and in the end, less hassle for them. I went with the second medical supply placed because they were open, honest and were recommending the machine I wanted. Bottom line is don't be bullied and feel like you are forced to take what they tell you. In the end it's your machine.

Aside from the machine itself the hardest thing you'll face is finding the right mask for you. There are many different mask and if your medical supply is top notch you will find that they will help fit you in a mask that hopefully will work but if it doesn't they will let you try several different mask before you are locked into one model. In my case I tried probably six different mask models before settling on one that I was going to keep. The thing you want in a mask is to not leak and not leave marks or sores on your nose.

My other recommendation is ask LOTS of questions here and on other forums. Also do LOTS of research on the internet, especially on YouTube as there are a number of reviews on masks so you can get some insight into the mask's pro's and con's. Hope this helps.

[robysue]

I guess I have lots of questions but the main one is how do I know what machine is a good one.

First, you want to read JanKnitz's What you need to know before you meet your DME

Also useful is JanKnitz's Data capable machines

Keep in mind that most insurance companies will only replace the blower unit once every five years or so. So you will be sleeping with the machine for a very long time. So it's important to get that decision right. Around here most folks will say that you need to get a machine that records full efficacy data (that includes both leak data and data about how many events occur in spite of the CPAP.) It may be that you will not be interested in looking at your data on a regular basis, but if you have any problems adjusting to therapy, the data recorded is critical in helping pinpoint the problem(s). Without the data, you, your doc, and your DME are simply taking pot shots in the dark hoping to stumble upon what will fix the problem.

CPAPs and APAPs are billed under the same insurance code. An APAP (an automatically adjusting PAP machine) is a bit more flexible since it can be set to run in straight CPAP mode, but a CPAP cannot run in APAP mode. And some people strongly prefer APAPs if they are set to run in a reasonably tight range. And sometimes being able to do a week or two run in APAP for autotitration purposes can help determine if your pressure can/should be changed to make your therapy more effective or more comfortable.

I rarely travel so portability is not a big issue. My fiancé is a light sleeper so I need a machine that is quiet. Do all machines use water?

Modern machines are virtually silent. However, noises from the mask's exhaust flow can be as annoying or more annoying than noise from the machine itself. And leaks can cause noises. And hose placement can add to noise issues. But all these noises are probably much quieter than your snoring is. Some bed partners do find that they need a white noise source when their partner is learning how to sleep with the machine.

As for whether they all use water. The answer is no. The CPAP itself is just a blower unit. But through the years, they've found that most people have an easier time adjusting and using CPAP if the air they are breathing is humidified. And so heated humidifiers are now pretty commonplace add-ons to the machines. Most docs routinely prescribe them and most insurance companies pay for them. However, if it turns out that you prefer no humidification, it's easy to detach the humidifier and use the blower all by itself. And there are a few folks out there (including my brother) who throw the humidifier in the closet and continue to use the machine every night.

Finally, on those rare times you travel, it shouldn't be a problem. Even the "standard" modern PAP machines are small enough to travel with. And the DME should supply you with a case to carry the machine and your equipment in.



Is there anything you can tell me that is important and anything I should avoid.

[seekingsleep]

I am already overwhelmed with your responses. I am in tears because nobody has ever understood me when it comes to sleeping. I try talking to people and they think I am lazy. I want to say my fatigue is causing me a fair amount of depression. When my kids (now teenagers) were small I had to sleep when they slept. Sometimes I would fall asleep on the couch while they played or watched TV. Recently my sleeplessness led me to a full-time night job because I was not sleeping anyway. (I do know I am defiantly more geared to nights. Mornings are dreadful for me! My mom told me when I was a baby she would find me bouncing in my crib at 2:00 in the morning! ha ha) Anyway, I have been working nights for three months doing palliative care in community health. Anyway, I digress. I can't believe you have all replied so quickly. It makes me feel less alone. The only person that really understood was my mom who also had sleep problems but she died 6 months ago from Cancer.
As for my insurance. I am Canadian so my insurance company can't tell me what machine to get but they may out a cap on the total price. That said, I would be able to pay any overage by myself.
The mask. I have a small face and when I was at the sleep clinic the mask they used was quite comfortable but my pillow got in the way. Is that is normal for all masks?

Anyway, thank you again!

[sleepinglass]

Re pillow: I fold my pillow in half when I am on my side so the mask is not on the pillow and it works well for me. Some people invest in special pillows, personally I do not find it necessary.

[junior49]

I'm right there with you. Just know that there will also be an adjustment period when you get the cpap machine. I had myself thinking all my problems would end the day I got the machine but that was not the case. I'm not trying to discourage you further, but just giving you a heads up that adjusting to sleeping with the hose may be quite a task. But hang in there. My doc told me my oxygen levels were so low when I slept that I was 8-10 times more likely to have a stroke while sleeping. Anything is better than that. Good luck with everything.

[BlackSpinner]

It is a great site. You will get all sorts of advice here. Do read the suggested links and the wiki (light bulb) at the top of the page.

Once you have the right machine the tricky part is getting a mask that fits. I keep telling people to select the mask as carefully as they would shoes for a marathon. Or like bras, masks come in all shapes and sizes and you need one that fits right for the occasion.

Oh and get used to sleeping at the edge of the pillow with the mask over the side.

[MobyTheMinnow]

Your not lazy. In fact I worked my rear end off all my life to end up arthritic and with sleep apnea. Not in the past 2 nights 4.5 times per hour when my neck was going to collapse and 6 times an hour when my brain decided not to tell me to breathe. My old machine only had one pressure and this new one is adjustable. I highly recommend an Autopap if you can get your hands on one. Each per many people could have kept up with me in one day. In fact harly any at all ever have. What happens is one of 3 things, one your neck collapses when you sleep, two your tongue rolls back and gets in the way when you sleep or your brain shuts off and doesnt tell you to breathe. (all breathing is involuntary, this is why you cant strangle yourself). My first sign was I smashed into a truck in the mall in my new car. After that I decided to get looked at. Everyone is different though you could be given a bipap, just make sure you can get what you need, pick the most expensive one if you can and make 100 percent sure it has DATA or you will end up in a bad way again and getting into see these "Sleep Doctors" is not a pleasant experience as your now finding out. The whole process takes too long and if you get the cheapest machine without data you will end up doing this again and again. Until you get mad like I did and just go out and buy one for cost off the web. Don't deal with a durable medical goods company if you can get away with the doctor setting it up for you and you buying the machine off the web. I would have done it the first time after finding out what a PAIN IN THE BUTT this. In order for some insurances to "pay" for the machine they make you rent it first from a durable medical goods company, then they make you buy it from them and then they charge your insurace again. Durable Medical Goods companies remind me of the Mob and their tactics. Anyways good luck to you, once you get your machine things will calm down for awhile.

[moondoggy]

I am already overwhelmed with your responses. I am in tears because nobody has ever understood me when it comes to sleeping.

I know how you feel as it is overwhelming some times but your right you are never alone when it comes to this community. It's kind of funny but in the last 3 months I've learned sooooooo much and got sooooooo much help that I now feel compelled to provide whatever help I can as payback for the help I've received.

In regard to pillows.... They are the bane of a CPAP user. The problem is that for comfort you want the mask to be as loose as possible but still seal but when you move from your back to your side you'll get leaks and leaks are bad. I've tried 2 different pillows now (one specifically designed for CPAP users) and nothing beats my regular pillow. What I'm trying out now is a mask liner as I was told they could stop leaks. Mine came from http://www.padacheek.com and after 2 days of use I can say that if things continue to trend like they have the last two days then this is a major improvement over not having anything.

[Julie]

Do a search for Pap pillow on the forum here and you'll see what many people use to sleep with.

[KSMike]

As to initial mask selection, it's important to know whether or not you normally breathe through your mouth when you sleep. If you don't, then you may be able to use nasal-only masks which are less obtrusive and suffer from pillow interference less. If you are a mouth breather (I am), you will most likely need what we usually call a "full face" mask. Which isn't really full face, but it forms a seal all the way around your nose and mouth. The so-called "hybrid" masks are sort of in between, with a full seal around the mouth, and nasal pillows that seal the nose without actually covering the nose. I'm on my 4th mask now, a hybrid, and it's been the best for me so far.

You start out doing a LOT of experimenting; I think of it as "gross tuning" (as opposed to "fine tuning"). It's important to spend time every day when you start out, doing some analysis. What worked last night? What didn't? You'll find the little tricks that improve the results for you. Eventually you'll be fine tuning, and I don't know if that phase ever really ends - I'm still at it over 3 years later.

The first few months can be pretty rough. In my opinion the key to keeping that phase to a minimum is that analysis time each day; don't just keep doing the same things that don't work for you.

[sleeptimeinNY]

I am fairly new to this also and after 6 weeks I am still working at it. I am still trying to be friends with my CPAP! You are doing the best thing for yourself being on this site because the advice is awesome.
Also, you are a HUGE step ahead of me because I was totally naive and ended up with the basic S9 Escape which is useless. I have been trying to get it upgraded for a month now. I have another doctor's appt today, so I hope it can finally get resolved.
My advice to you (as you will hear from everyone here) is to have patience... and more patience! I have learned that everyone's journey is different.
Good luck!

[chunkyfrog]

The statistics I've seen rate my machine as the quietest--I love it!