Just diagnosed, in denial, questions....

[John from Brookston]

You know the old joke that goes "When I die, I want it to be like Grandpa, peacefully, in his sleep, not screaming, like his passengers..."?
Woke up in the ditch at 65 MPH and missed a utility pole by a foot and spun the truck twice getting it back on the road.

After that, PAP doesn't seem such a big deal. It's non-invasive and it works. You just gotta push through the learning curve, the mask leaks, the frustration, and that's where the folks here come in. They'll help you get into it.

FWIW, my AHI was 97 when I was diagnosed. It now runs between 1 and 5.

Welcome to the Family!

[Hivoltfl]

Get the machine, I agree with pugsy you might take to it just fine. when I started 8 years ago I found a new best friend in my CPAP machine and I took to it like a duck to water, best thing I have ever done. Not everyone has issues for some of us its a great thing.

[archangle]

Most of the side effects, problems with masks, etc. can be eliminated with some effort. Post here and ask for advice if they happen.

Be SURE to read up here to figure out how not to get screwed by the DME (CPAP salesman) and get a good data capable machine. This has many advantages. There are some links in my signature line to getting the right machine.

Don't panic about the idea of central apnea. They're not necessarily more harmful than obstructive, just harder to treat. A data capable CPAP machine will tell you if it develops.

Ear problems sometimes develop. If they happen, you may be able to eliminate them with an oral mask, but they're a little hard to adjust to.

I think your chance of developing some sudden, serious problem is a lot higher from untreated apnea than it is from CPAP. Apnea can cause stroke, heart attack, slow cumulative damage to the brain and heart, stress, high blood pressure, and many other general degenerative problems.

As for having already done damage to your body, think of apnea as being like smoking cigarettes. If you stop, you usually heal up over time, but there's some risk of some degree of lasting harm. I wouldn't worry about it too much as long as you start CPAP and your doctor doesn't want you to get a cardio checkup. Do ask your doctor if you need a cardio checkup due to the apnea.

As for sleeping on your side, and other ideas, the clear answer is CPAP. If you do the other things, how will you know you've actually cured your apnea? Your insurance probably won't pay for another sleep test. If you get a good CPAP machine, it will tell you how your treatment is going.

[jbt1125]

Most of the side effects, problems with masks, etc. can be eliminated with some effort. Post here and ask for advice if they happen.

Be SURE to read up here to figure out how not to get screwed by the DME (CPAP salesman) and get a good data capable machine. This has many advantages. There are some links in my signature line to getting the right machine.

Don't panic about the idea of central apnea. They're not necessarily more harmful than obstructive, just harder to treat. A data capable CPAP machine will tell you if it develops.

Ear problems sometimes develop. If they happen, you may be able to eliminate them with an oral mask, but they're a little hard to adjust to.

I think your chance of developing some sudden, serious problem is a lot higher from untreated apnea than it is from CPAP. Apnea can cause stroke, heart attack, slow cumulative damage to the brain and heart, stress, high blood pressure, and many other general degenerative problems.

As for having already done damage to your body, think of apnea as being like smoking cigarettes. If you stop, you usually heal up over time, but there's some risk of some degree of lasting harm. I wouldn't worry about it too much as long as you start CPAP and your doctor doesn't want you to get a cardio checkup. Do ask your doctor if you need a cardio checkup due to the apnea.

As for sleeping on your side, and other ideas, the clear answer is CPAP. If you do the other things, how will you know you've actually cured your apnea? Your insurance probably won't pay for another sleep test. If you get a good CPAP machine, it will tell you how your treatment is going.

Thanks. I am fortunate to be a self-made individual that can afford to spend any amount of $ needed on this out of pocket. So there will not be any CPAP salesman trying to spiff me a specific device of theirs, or going with what insurance throws my way. When the time comes, I was going to ask and research this board what is the absolute best CPAP machine currently (for combination of quiet, reliable, heavy data reporting, etc.). The money no object one. Same with mask, etc.

The reason I originally brought up exercise, sleeping on side, etc. is that my report shows 75% supine sleeping position. The AHI for when I was non-supine was 4. To me that indicates that for me personally, side sleeping might help. Again, I need to discuss all this with my doctor. I have an appt. with the ENT that ordered all this in an hour, and I have my titration study scheduled for tonight....

[ChicagoGranny]

The AHI for when I was non-supine was 4. To me that indicates that for me personally, side sleeping might help. Again, I need to discuss all this with my doctor.

Check what sleep stages you were in and for how many minutes during the non-supine portion!

For example, if you only hit stages 1 and 2, then an AHI of 4 is not conclusive of anything.

On the other hand, if you were in REM for a couple of hours (very unlikely) during non-supine sleep, then an AHI of 4 is indicative that treating by avoiding supine sleep may be a good option for you.

But also, we have to remember that we sleep differently every night and patients often sleep very differently in the sleep lab as compared to at home. It is common to get false negatives from one night in the lab or results that indicate less severity than is actually the case over many nights.

[archangle]

Thanks. I am fortunate to be a self-made individual that can afford to spend any amount of $ needed on this out of pocket. So there will not be any CPAP salesman trying to spiff me a specific device of theirs, or going with what insurance throws my way. When the time comes, I was going to ask and research this board what is the absolute best CPAP machine currently (for combination of quiet, reliable, heavy data reporting, etc.). The money no object one. Same with mask, etc.

If you need CPAP, the best money can buy is the ResMed S9 AutoSet or the PRS1 60 series Auto APAP machines. End of story. Even if fixed pressure CPAP is best for you, these can do it.

Some people need more complicated bilevel/BiPAP/VPAP or ASV machines. They're not "better" unless you have certain problems. They cost enough extra that it makes sense to buy the APAP and then buy the more complicated machine only if necessary.

[purple]

If you are looking for a physical attribute on the outside of your body that you can see that relates to the need for xPAP. It would be the size of ones jaw, the size of ones nose.

I wonder if the real question is whether those who need xPAP to see if there children and grandchildren might get some treatment early in life, which would allow for their jaw to grow wider and more forward, so they do not need xPAP as an adult. IE, Look to see if those babies gasp for breathe when sleeping.

Two months ago I went to see a Cardiologist. The docs nurse, who has some years experience dealing with cardiac patients, was telling me that Cardiologists had discovered that proper Sleep Apnea treatment made a huge difference to improving the quality of life for their patients. Plus, if the patient started treatment early enough, they only meeting with a Cardiologist was for a check up, the simple stress test, not; Angiograms, stents, open heart surgery, quick trips to the ER.

A trained Diabetes expert, who read the current studies on Diabetes and Sleep Apnea, told me. "There is also a huge improvement in the reduction of higher Blood Glucose and improvement for quality of life, length of life for Diabetes patients," for those with successful sleep apnea treatment.

The first line of treatment for, 'Air in the skull," or actually getting pushed into the sinuses, would be a Bi Level machine. Which Philips Respironics puts in the name of the machine, "Bi-Pap", and Resmed calls theirs a VPAP. These machines have a lower pressure on exhale than inhale can be five or more points of pressure. Usually the sleep labs do not try to diagnose with bi level pressures until the needed pressure is 12 or over. Like someone said, they can be more expensive. There are some PR Bi-Pap machines that are nearly the same price as a normal PR machines, PR machines being quite often lower than Resmed. Despite the fact a lot of people here love Resmed, many sleep doctors prefer PR machines, and not because they are less expensive. Resmed does not offer discounts of any types. Pugsy has said, "that there is not a dimes worth of difference between similar machines between PR and Resmed in how they can successfully treat Sleep Apnea." Although there are slight differences in the algorithm of the machines, which can make a big difference to some users. If you can get a good titration, then you might avoid the trap of trying to, on your own, putting the machine on Auto, as kind of an at home titration fix. That is a machine on auto can try to raise its own pressure higher, often just chasing mask leaks.

Insofar as my experience, I have a larger than normal opening between the inside of my sinuses, and the tear duct in my eye. so for a long time I used a Full Face mask rather than a nasal mask (nasal masks are far more popular). Now I use a FitLife Total face mask (the mask of the last resort) which allows me to get both my eyes, nose, mouth under the mask. The real reason I use the Total face mask is that the sides of my face are uneven. I do like that the pressure on my face is distributed over a larger area. I notice that if one does not put the mask on until starting the machine blowing, ends any sense of claustrophobia.

I suspect that you will have a different experience with your sleep doc than many of us have. Being on insurance, like Medicare, or an HMO, where the doc is pressed to run fast between many patients to make a living. Also your business ability to speak to someone and get to the important information from the doc without wasting his time will cause the doc to try to be more helpful to you. Docs may be kind to the old and disabled, they love people who work.

Whether you are using insurance or not. You will have a DME. A "Durable Medical Equipment" company which will sell your masks, hoses, filters, odds and ends related to therapy. A good DME should also help you to fit your mask, help with information. and so on. A lot of people here tell horror tales about them and their DME. Personally I have only had great experiences with DME people. Why insurances require that we deal with a brick and mortar DME rather than buy our stuff for less money from the least expensive place online relates to the fact almost fifty percent of those who get a diagnosis, titration, machine, quit. The DME is providing a rent to own machine (payments over 13 months for Medicare). The DME in conjunction with the Sleep Doctor will monitor your compliance with using the machine. The DME should be willing to give advice to make using the machine easier. If you buy the same machine online, for less money, and you need help with, how do I make this happen or that, or what is going on here, then you have no one to call. If you have a DME, then they have a phone number for you to call 24/7. The DME will put a little stickie on your machine with an1-888- number. The most often quoted resource on DME's is

http://maskarrayed.wordpress.com/what-y ... me-part-i/

which I highly suggest you read. And take Janknitz advice over mine, Janknitz knows more than I do , and usually expresses it more informatively.

What you will want to do at this stage. You will want to get a copy of your sleep apnea prescription, and the sleep study, not the whole sleep study, which would be like a huge computer listing, just the little two page sleep study summary. You can make some extra copies. Put one copy in your sleep apnea travel bag, scan one into your computer. When you travel, and you suddenly need something sleep apnea, like a hose or a mask, then one must have a prescription to get a DME to sell it to you. Getting your docs office to FAX a prescription, then you have to pick that up. If you have the "Sleep Study' summary then any GP will quickly agree to write a prescription, which you can take to a local DME.

If one only has OSA, some can get restful sleep by sleeping sitting up without a machine, but not on their backs. Like if the power goes out, you are in some other kind of situation.

BTW, do you also have GERD? It seems to be a concurrent disease.

When I first started treatment, it was like a hurricane blowing in my face. After six weeks, it was like, I think the machine must be broken, it seems to be barely blowing at all. I think many of us have been surprised by what we have gotten used to, in a lot of ways, relating to sleep apnea treatment.

As my apnea had manifested for some years, because I could not afford treatment, I had a great experience. I say it is like coming back to life. Before treatment I would wake up in the morning saying, "It can not be time to get up yet." To wow, I feel great, I have so many neat things to do today.

Your experience may not be quite so dramatic. Some say they are not getting improvement in their life while doing the treatment exactly as prescribed, then they miss a night, then they say, "Wow, I did not realize how much sharper I am on treatment, how much more energy I have on treatment, how much better I remember. Sometimes how much nicer a human being they have become on treatment.

Best wishes.

[jbt1125]

Wow purple, thanks for the post and detailed information!

I just got home from my titration CPAP study.

1- glad I did it, and I appreciate the gentle nudge from this board...to be honest, its the primary reason I ended up doing it...my ENT was sort of ho hum about whether or not I really needed it, and I cant get an appt with the sleep doc until later, so I was biased to just wait...but again, glad I did it

2- started with the nasal pillows....definitely the most comfortable, but I found it difficult to keep mouth shut...not so much when sleeping, but even before falling asleep...how do you yawn? what do you do if you need to clear your throat? I actually found the inability to open my mouth a bit disturbing... also, I have nasal/sinus and eustachian tube dysfunction issues, and while it may have been in my head, it felt like I was getting a lot of pressure in general...is this perhaps what is discussed about "air pockets in the skull"?.... I found it uncomfortable, I think I was also swallowing a lot of air, was bloating, etc. All this on the lowest setting of 4.

3- so, I called the tech in and indicated I wanted to try the full mask, she put that on me... it was physically less comfortable on the face obviously, but to be honest, I found it easier to relax... felt that I could cough, yawn, clear my nose with a snort if I needed to, whatever....again, may have all been in my mind, but seemed to feel less pressure in my face/head and it felt a bit more "natural"... I committed to try to get comfortable and fall asleep with it... which I apparently did, according to the tech, sleeping from about 12 midnight to 4:45am CT...I woke up at that time, pretty uncomfortable and needing to go to bathroom anyway... once I did so, we discussed, and decided with only 45 min left until dismissal, that I would probably have a hard time getting back to sleep, etc. and she was fine with the test results, so I left.

POST-impressions...

Proud of myself for doing it, she wouldnt share results other than indicating that I would benefit from CPAP. She also said "I took over early because I could tell your body was fighting it a bit and I wanted your first experience to be a good one". I translated that into the fact that perhaps the auto machine would have given higher pressure and she downgraded it a bit from her chair, but I am not sure.

Unfortunately, to be entirely honest, I do not feel any different than I do any morning. Doesnt mean I wont give this time, try it more, etc. But I guess on some level I was hoping for the dramatic wake up that many on this board describe, feeling better, sharper, etc. than ever before. I feel exactly the same. In terms of negatives, the big one for me is that I woke up with nausea this morning. I am guessing that has something to do with swallowing air, etc. Has anyone else ever felt nausea with CPAP? No dry throat/nose, no chest tenderness, or some of the other things I read about. I do feel a bit of pressure in my head.

Thanks again for all the support.

[zoocrewphoto]

Unfortunately, to be entirely honest, I do not feel any different than I do any morning. Doesnt mean I wont give this time, try it more, etc. But I guess on some level I was hoping for the dramatic wake up that many on this board describe, feeling better, sharper, etc. than ever before. I feel exactly the same. In terms of negatives, the big one for me is that I woke up with nausea this morning. I am guessing that has something to do with swallowing air, etc. Has anyone else ever felt nausea with CPAP? No dry throat/nose, no chest tenderness, or some of the other things I read about. I do feel a bit of pressure in my head.

Thanks again for all the support.

I did not wake up feeling great. I was groggy, and went home, planning to take a nap. I stopped at the computer to send my friends an email to let them know how it went. Then I continued on, and never got to my nap. It was only later that I realized that I wasn't tired like I expected to be, even though I slept earlier and not at my normal time. And then, the next night, I had dreams of wanting cpap. And the next day, I felt like crap, realized I felt like I normally do, only that I know it is crap now.

So, it wasn't an instant, full of energy feeling. More of a not tired like normal feeling.

[Pugsy]

The nausea..yeah I have had that with the swallowing of air on a couple of occasions. We call that aerophagia and there are ways to minimize its effects if it wants to be stubborn problem. If your belly was blowing up with 4 cm...you may want to talk to your doctor about bilevel machine...like the ones I use...not the fancy ASV bilevel.
A bilevel machine will help greatly with the aerophagia issues and also help with the ear pressure issues.
Also hugely comfortable in general.

Believe it or not but I can yawn with my nasal pillow mask and even talk without any air escaping my mouth. It's something you learn with time and experience. Not something you do right away. Takes some practice with tongue placement and a bit of involuntary reflex control that you convert to voluntary.

FWIW...at least you didn't come out of the titration study feeling like you have been run over by a bus. That was my experience. Long story there that I won't bore you with.

You know your overall symptoms of OSA aren't very dramatic so I really didn't expect hugely dramatic change from the study.
Number one those "miracles" are rare and I turn pea green with envy when I read one and number two...your symptoms aren't dramatic or you wouldn't have been sitting on the fence so much about "should I or shouldn't I try cpap".
Your O2 drops aren't massive...so in general think of it as the early stages of a condition before things have had a chance to get worse...there isn't as much room for the miracle (which is rare even if there is a lot of room).
While I was hoping you would see a dramatic change just to help you get off the fence....it doesn't really surprise me that you didn't. At least you didn't come back complaining of feeling like a bus had run over you.

Oh...bilevel machines...not just for those who need higher pressures. Read up on them...check out what I use.
If you were having some belly air at 4 cm....might as well try to limit any potential problems from the beginning.
Sometimes harder to make a case for it but depends on doctor.

[Julie]

Hi - as you can see I use a FF mask, and rarely yawn if ever (tho' can do it easily) because yawning is a symptom of not enough O2, but on Cpap, that doesn't happen often of course, even though you're not officially on 'oxygen' therapy.

It's great that you're in a good financial position, but really for plain OSA the S9 (though I don't use it - not enough $$ and no real need) does seem to as good as it gets until you get to the bipaps and ASV's, which you wouldn't need unless you were diagnosed as needing those. However, I'm linking you to a story re a member who no longer posts here (and you'll see why), but who is doing great without a machine now.

viewtopic.php?f=1&t=68789&p=638356&hili ... al#p638356

[Drowsy Dancer]

The reason I originally brought up exercise, sleeping on side, etc. is that my report shows 75% supine sleeping position. The AHI for when I was non-supine was 4. To me that indicates that for me personally, side sleeping might help.

There frequently is a a positional component to OSA, but it can be surprisingly hard to train yourself completely out of a preferred sleeping position. I need more pressure when I sleep on my back, but I'm more comfortable there. But with higher pressure I'm more prone to aerophagia. I still have a hard time keeping myself off my back.

[JohnO]

I just got home from my titration CPAP study.

Glad to hear you went through with the titration. Did the tech tell you what the most effective pressure was? Did the tech indicate when you would get a copy of your test results?

I started on CPAP last August. I'm 49. While I have snored like a freight train for many years, my wife is pretty sure I didn't stop breathing during the night until last March or so. I've been aware of sleep apnea for a few years, and have been watching for it. When my wife first mentioned that she noticed I had stopped breathing during the night, I immediately did two things. 1. Bought a mouth guard that claimed to stop/reduce sleep apnea, and 2. bought a recording pulse oximeter so I could see for myself if my oxygen saturation was decreasing in the night. The mouth guard did me no good. The pulse-ox showed many, many events each night where my SpO2 was falling below 90. Sometimes well below... I did not jump into getting my sleep test until I understood the ramifications to my pilot certificate, as you need a Special Issuance from the FAA to fly with sleep apnea (basically - you need to show you are being successfully treated). I had my test the first week of August 2012.

I never felt that tired or sleepy through the day, but when I did, I assumed it was because I had a big lunch. Now I realize that that was the effects of sleep apnea, which, I'm sure, would have gotten worse over time. I don't feel magically better now that I'm on CPAP, but I'd guess that is because I hadn't gotten too far damaged in the first place. My weight is about the same, my BP is about the same, my energy level is about the same. I do get up to pee many fewer times during the night, so there is that.

Get your self a good machine. Get an Auto-CPAP even if the doctor believes straight pressure is "good enough." Spend the time to get comfortable with your mask.

Good Luck!

John

[purple]

Like, with what I know now, I would advocate for a bi-level machine for myself. Problem is that a lot of insurances have rules that try to keep them from having to pay for a bi machine, as it costs, more. For Medicare, one must fail cPAP and/aPAP before getting a bi-level machine. Or to have a disease like MS. I would not have gotten a bi machine unless I paid cash for it myself. Once again, some of reasoning that DME's use in this is covered in JanKnitz post of what you need to know before you meet your DME.

The goal of the titration is help you find the right pressure. A lot of us did not get a good nights sleep on either night of the sleep study. The goal not that at the beginning of the titration night they knew what pressure was best for you, but that by the end of the night they have enough information that they can figure it out.

Some patients take a few days to catch up on what some here call sleep debt. That is over the years, we have accumulated some kind of sleep debt, that we have to go through. I suspect though, that it takes awhile for some of us to get the leaks, and treatment under control, even though we think we have the thing under control.

Reading the result of your sleep study/or titration is not trivial. It takes knowledge, experience. Last time I did it, the tech told me that they had a huge computer listing of your entire night. They score each small period, I think in sections by hand and then combine the results. At least two different people will score your studies. As of last year, no computer program had the skill to score the tests. Which is why it will take a few days before they talk to you.

The usual goal of a doc is to get the AHI to less than five. I have found that for me to feel like I had a good nights sleep, I need to have my AHI to like ".2." Might be the biggest change for you is to have a quicker mind and better memory. That is not so easy to realize is happening.

My use of the term Auto may be misleading. When you did the titration, if they saw the level of pressure they had you at was not high enough for you stay asleep (they are looking at your brain waves, O2 levels), then they would increase pressure. When you get a machine, you want to get one that has the auto feature on it. After a year into treatment, it can be useful to set the machine on auto and see if it can help you. Some folks on here must have their machine on auto every night to get a good nights sleep. I am the opposite, something about my breathing patterns causes the machine to keep cranking up pressure, when my sleep does not need it. Still, on principle, it is good to have a machine that will it to be set to auto, you do not have to have the auto set to on. The machine can do both. What I think can be a bad idea, is for a person to try to titrate themselves by setting their machine to auto. There are enough frustrations in trying to do sleep apnea treatment than to have to deal with the starting a bunch of nights at too low a pressure to help. Or to have the machine keep ramping up pressure to chase leaks. Some people have made this technique of using a machine on auto to get started on doing their treatment. Some have used the auto on machines to help them find the right pressures because their titration did not go well. Auto on a machine is a potential setting. You want a machine that has full data reporting and has the auto feature. If it is bi-level machine. Well, you might want to interact with Pugsy about which exact bi level machines work well, and are of equal type between the different manufacturers. I bet though that your doc will be great at talking with you about this, and few of us know as much as a sleep doc knows.

If you decide to go for a bi-level machine, and your insurance will not cover it. If I were the patient, I would buy it online before I got into a relationship with a DME. DME's can be a bit difficult when the DME feel that you bought a machine from an online seller instead of from them. However if you already had the machine, they will just as happy to have the sales of supplies, like masks and hoses, and then to provide their advice on how to use this stuff.

Let me put that differently. I had a lot of experience in doing treatment and the DME's I used were always great to me. I moved from one part of the country to another. The DME was OK with helping me with the machine I bought in another part of the country. They would set it. evaluate whether it was working and were very nice, helpful. RT came to my house and walked into my bedroom to fiddle with the machine. Talked about different masks and then the DME let me try different masks without charge. They were always willing to ship me whatever I asked for when I already owed them money. Then I bought a machine online, and they were very unhappy with that. Like they said, we will not help you set that new machine. While they still are willing to let me try new masks, and are very easy going about the fact I always owe them money, they would be less helpful if I bought another machine online. Of course the brick and mortar DME charges a lot more for the exact same machine I bought online.

[Kenwood]

Like, with what I know now, I would advocate for a bi-level machine for myself. Problem is that a lot of insurances have rules that try to keep them from having to pay for a bi machine, as it costs, more. For Medicare, one must fail cPAP and/aPAP before getting a bi-level machine. Or to have a disease like MS. I would not have gotten a bi machine unless I paid cash for it myself. Once again, some of reasoning that DME's use in this is covered in JanKnitz post of what you need to know before you meet your DME.

The goal of the titration is help you find the right pressure. A lot of us did not get a good nights sleep on either night of the sleep study. The goal not that at the beginning of the titration night they knew what pressure was best for you, but that by the end of the night they have enough information that they can figure it out.

This will give you an idea of the process of finding the right pressure during titration....as you can see I was switched from CPAP to BiPAP midway through my titration.