So just what am I in for?

I had a full-night initial sleep study a month ago, then a visit to the sleep doctor, then a second night at the sleep lab this past Tuesday for a CPAP titration study. It's not clear to me why they didn't do a split-night study which is what I was told they would probably do. Anyways, I don't have my written report from the initial study yet but here are my notes from the oral rundown at my followup visit:

My AHI=26 based on a total observation period of 6:51 with 114 apnea events (which I guess means 60-odd hypopneas, too).

My oxygen saturation stayed "surprisingly high" considering the frequency and duration of my apneas. Only once did it drop below 0.89 and that was a drop into the 70's during a 54-second cessation of breathing.

I had "just a few" central apnea events which he discounted as normal and nothing to worry about.

My breathing was totally independent of sleeping position. He indicated that was a bit unusual. I spent nearly equal periods of time on my back, left and right sides.

He says this is the sources of my problems are overweight (BMI=30) and the shape of my throat which narrows very abruptly at the back of my mouth. I asked about losing weight and he said it would likely help but only if I lost 20% or more of my current weight. In the mean while he thinks a CPAP machine will help almost immediately with my extreme fatigue and all-day sleepiness (but only if I'm among the 70% of his patients who actually use the darned thing).

OK, so that was the followup from the diagnostic study, which was not the most pleasant night of my life. But this week's night of titration was really annoying. When they first put the mask on my, I found it a little anxiety producing to have to exhale against the pressure. But after a few minutes I relaxed and just breathed in a more-or-less normal rhythm. It took me about 45 minutes to fall asleep (I'm usually out cold in 5-10 minutes tops) and I spent most of that time trying to find a way to sleep on my side without bumping the mask and making it leak into my eyes. I never was able to get in my normal position, it was either stay on my back (which I hate) or on my side but with my head turned unnaturally to keep the mask off the pillow.

I did settle in and get some sleep until waking up for a bathroom trip at 1:30AM. I noticed when I put the mask back on that the pressure seemed way, way higher than when I started. There was definite effort involved in exhalation and it was really drying out my nose and throat. Before I left the next morning I asked the tech and she said they started increasing the pressure as soon as I was asleep. Unfortunately, I forgot to ask what setting they ended up with.

Here's the stuff I'd like feedback on. The last couple hours before morning were very restless and uncomfortable. I ended up on my back most of the time and my nose was itching inside the mask. But the big problem was all that air trying to get out my mouth and down my throat. By the end I felt like my tongue was exhausted from being pushed on by the pressure. Every time I tried to swallow I ended up with a big bolus of air going down my gullet (accompanied by a funny noise in my ears). It really did feel almost like I'd been sticking my tongue out as far as it would go for an hour or something like that.

So do you get accomodated to that feeling like you've been weight-lifting with your tongue? Or was I maybe just tensing up trying to keep my mouth closed?

It seems to me I must have been operating on a really high pressure setting by the end of the titration. I wonder if that was necessary to stop my apnea/hypopnea or maybe being set very high to stop my snoring.

Do you think the Respironics CPAP they were using had a humidifier? It made me pretty darned dry in just over 7 hours which I would hope shouldn't be so bad with humidification.

Why might they have made me spend two nights rather than doing a split-night deal? Isn't a split night the usual-care protocol now?

Welcome Brent,

You're in for a lot of fun. Seriously. Relax. Enjoy it. You'll definitely begin to feel better. XPAP takes some getting used to, and it takes time. Not many folks seem to take to it on day one. Most of the stuff you're talking about goes away. You learn how to adjust your equipment and optimize things for yourself.

One of the most important things is to be very direct with your physician and DME, if you aren't normally already. Remember, that they work for you. Make sure you get the right equipment that you need. Folks here can help steer you in the right direction.

Regards,
Bill

NightHawkeye wrote: One of the most important things is to be very direct with your physician and DME, if you aren't normally already. Remember, that they work for you. Make sure you get the right equipment that you need. Folks here can help steer you in the right direction.

That's a good reminder, Bill. I normally don't have a problem telling/asking whatever I think appropriate from medical professionals. I've been a little distracted during the early stages of this sleep apnea quest but after boning up on some of the technical stuff I think I'll be able to do a better job of advocating for my own best interest.

Honestly, my first temptation was to write the whole thing off as some kind of racket. The whole process of diagnosis, prescription and equipment is so streamlined and down pat that it sets off my "Woah, wait a minute!" reflex, especially given the amount of money the whole thing consumes. I have a healthy skepticism of modern medical over-technologization (is that a word?).

But I've had so many people come out of the woodwork the last few weeks and say they've found the CPAP therapy to help them get their life back that it's become obvious I have to at least try it. Nothing worse than being too smart for your own good and thumbing your nose at something useful just because it seems complicated...

The whole process of diagnosis, prescription and equipment is so streamlined and down pat that it sets off my "Woah, wait a minute!" reflex, especially given the amount of money the whole thing consumes. I have a healthy skepticism of modern medical over-technologization (is that a word?).

Sounds like the right reaction to me. If you read through some of the posts here you will discover that many people who simply trusted their medical providers were disappointed and found that blind trust was not well placed.

I ran a poll a few weeks back and found that almost no respondents were at their initial titration and almost all had changed to APAP machines. Couple that with the nearly 50% drop out rate for CPAP therapy and it suggests, to me at least, that one needs to monitor and be in control of this therapy oneself and be ready to make adjustments when necessary.

Regards,
Bill

Brent Hutto wrote: Why might they have made me spend two nights rather than doing a split-night deal? Isn't a split night the usual-care protocol now?

My sleep center seemed a little annoyed that my doctor ordered a split night up front. And they may have had a point since I didn't sleep at all well during my test. Basing the titration on a half night of poor sleep probably wasn't completely conclusive. I used my doubts about the study to help justify getting an Auto CPAP machine, which the doctor agreed to prescribe for me. Oddly enough, the APAP data is indicating a lower pressure than the titration study. I was guessing that my inability to get deep sleep during the study would have biased their pressure titration to be too low.

Welcome Brent:

I am new to this process also. I have only been on xPAP for 11 days and in that short time thanks to this forum I have learned a lot about how to manage my OSA.

I was originally given a CPAP Machine with C-FLex, Pro -2 . A good machine but after getting info I asked my Doc for an APAP and I am waiting for it to arrive.

I also have ordered a smartcard reader so I can see how my treatment is going.

I have not yet adjusted to the mask and am trying several different kinds.

SOme here have an easy time of it but most have to make adjustments of some kind to accomodate the medical technology.

Based on many posts that I have read. xPAP can have a profound impact on your quality of life. However, this is very much a user intensive therapy.

Your interest in your outcome will have a direct impact on your results. This is typically not a flip the switch appliance solution. SInce everyone is different, the solutions and response to therapy is very individualized.

COnsider you have just embarked on a voyage to better health and with patience and the support of the many fine folks on this forum you will find you are not alone and you will not be dependent on the Medical community for all your answers.

Best of luck & welcome,

Tom

Brent,

The primary reason you see an initial sleep study with a titration followup is time and initial diagnosis.

If you haven't already been diagnosed with sleep apnea, they like to take the first night to get at least four to six hours of sleep to determine a number of potential issues that could be a problem ranging from OSA, CSA, hypopneas, restless legs syndrome, etc.

Most people struggle during the first's nights visit because all of the electrodes hooked to your head, face and body. A normal sleepy patient at home might be out in 5-10 minutes, but you'll just about be certain it will be 45+ at the lab the first time. My doctor prescribed a 10mg Ambien (1 pill) for the study which I said I didn't need initially, but filled it for $9.00 for the titration followup (a major help!)

Once they determine you have OSA, it's back for a titration study to determine your best pressure setting through trial and error while also being monitored a second time. I was told the titration study was cheaper and they were right (1st $2,337, 2nd $2,334! ) At any rate, they would like for you to experience at least another six hours of sleep where they can adjust your pressure 1 or 2 cm H2O (centimeters of water) until you stop having "events." By morning, if enough sleep has passed, they should have a fairly accurate setting.

In my particular case, I had a split study since I'd formerly been diagnosed seven years earlier. They already knew my preferred mask and size so it was trival to flip on the lights, hook me up and continue the study. The problem is that I only had two hours left to try to determine the right setting and I had trouble tossing and turning and likewise, my CSAs rose so another study was required to find the better setting.

I honestly think based on the price of sleep studies, that you should show up earlier in the evening, see what kinds of masks are available and be fitted prior to sleep on night one. That way when apneas are revealed and hopefully early in the first study, the polysomnography therapist can enter your room, "hook you up" and proceed with a faster split study. Let's face it, masks are always < $200 while studies exceed over $2,000! Fitting a patient for a mask and discussing the possibilities 20-30 minutes prior to sleep in case of OSA is good practice IMHO.

My followup study was worth the money as it showed I didn't tolerate CPAP at 16 cm H2O, so I received a shiny new BiPAP auto that "rocks!" Likewise, my sleep lab automatically bills for a new mask each study, so I was allowed to select yet another mask to try so now I have three newer ones in my arsenal and I like all three and am constantly swithing around looking for the happy medium. I still think the key is a desire and committment to yourself to make this work--attitude is 90% with this stuff about making it work and not giving up!

I still think it's ABSURD to prescribe PAP treatment today without humidification. I know some make it without, but the majority WANT and USE minimally passover (non-heated) or heated humidification.

I took the time to put together a two page summary (justification) on why I needed mask x, machine x, humidifier x, etc. prior to my followup visit with the doctor so I could make sure I didn't leave anything out important to me.

If you need justification for humidification (primarily for insurance on these things) mention nose bleeds, dry nose, constant need to "pick" your nose every morning, dry/sore throat, etc.--they'll get you a humidifier!

The justification I used for APAP vs. CPAP was primarily based on the idea that I had x amount of dollars in my medical reimbursement account and when it was gone I was FINISHED with trial and error therapies. So, my justification was

1. I would be loosing a lot of weight which studies show often lowers your CPAP pressure. Without APAP, I would need another titration study which I would not be able to do or afford (so I stretched the truth a bit here)
2. I had feelings of night panic/terror waking up with my pressure setting so high. Suggesting the APAP is scale based system that runs in a lower pressure setting until needed would help with compliance.
3. Higher pressures tend to equal more mask leaks; APAP running on the lower end of my scale should help with mask leaks which again should help with compliance.

The Respironics Auto CPAP is a machine that runs in straight CPAP (constant pressure mode) while likewise offering an automated (APAP) feature so your doctor bent on CPAP only could order this machine and have your DME configure it in CPAP and then if it doesn't work out, the DME (or you later) could switch it over to APAP especially after the compliance period for insurance is over and you own the equipment. If you are purchasing out right--skip all this and buy what you want online

I hope this helps a bit!

Good luck and thanks!

Just to make things clearer:
Any automatic machine can be run as a straight PAP.
Until recently, there were no straight PAPs that let you monitor your own therapy - now both Respironics - with the Remstar Pro 2 and Puritan Bennet - with the 420S - have them. I'm not sure about Resmed...

Many of us have found the flexibility of an APAP very helpful to our therapy.
Others have found the single pressure they need, and stayed on it. IMHO, monitoring you own therapy is an absolute must - at least in the beginning. This can be done on one of the reporting straight PAPs too. - See posts by Jerry69. The higher the pressure, and the more varied your needs, the better off you'll be with an APAP.

Research (and the experience of many of us "nightly monitors") has shown that AHI and pressure needs may be very variable from one night to the other, so not basing your pressure on the results of one nights (or even half night's) snapshot is a very rational thing to do. Click on this link for the research info --> Standard Diagnostic Test For Sleep Apnea Does Not Detect Condition In Many Patients

O.

Wow, an overnight outpouring of great advice. Notwithstanding the expense and trouble, it sounds like diagnosis and titration on separate nights might turn out to be to my advantage anyway if it gave them plenty of time to see what pressure works in a variety of sleep stages, positions, etc.

Regarding humidification, on the form I filled out after my night of titration I complained about a sore itchy nose and painfully dry throat (as well as the feeling that my tongue had been overused or something). That was before I even knew there was a such thing as a CPAP humidifier accessory so I wasn't trying to game the system, it really did screw up my nasal passages for the rest of the day.

I'll be straightforward about the request for an auto-setting CPAP unit and I'll also be direct about my intention to monitor the course of my therapy. Something that I'm very clear about with all my doctors is that I'm going to monitor my own health status, I'm going to ask a lot of questions and I'm going to read medical journals and generally accepted clinical guidelines. So far I've never ended up with a doc who isn't comfortable with that but if so I figure the yellow pages are full of others to choose from.

I may ask this in another topic later but are the Remstar units a real hassle to take on a trip (especially overseas)? It sounds like a Remstar Auto with C-flex and the attached humidifier is an awfully good machine. I'll be in England on vacation for two weeks in June and the only reason to look at the Goodknight unit is it's supposed to be much more compact and portable.

REmstar Apap is THE machine, IMHO. They are just coming out with a more compact version wihich might be better. See info on the forum about it.

tom

roztom wrote:They are just coming out with a more compact version wihich might be better.

Hmm, radically new design. Hasn't yet withstood the test of time. Looked interesting, but there are things about it that I don't think I like.

Regards,
Bill

Yes, No reviews on it yet. I read somewhere (here ) that it has a seperate power supply so the weight might be the same overall.

tom

Well, I'm glad I picked up a copy of my sleep study report. The notes I made after from my conversation with the doctor weren't quite right.

My AHI is actually 23, not 26. It's my RDI that's 26.

The one thing that stands out is that my blood oxygen saturation is very stable even when I'm having an apnea event. The only time all night it went below 90% was during a 54-second apnea and my O2Sat went down to 89.4%. I averaged 95.5% with a maximum of 99.1% so I guess my heart and lungs are in pretty good shape for a fat middle-aged guy with an office job.

In 6 hours, 51 minutes I had 43 obstructive apneas, 15 central and 27 mixed, and 22 of my 23 hypopneas were categorized as RERA. I think that's an artifact of my stable O2Sat since an RERA is exactly like a hypopnea except the desaturation is less than 4%. I had a lot of 3% desats but only a very occasional 4% one (even during apnea events, apparently).

My sleep stages look awfully good for someone who can't stay awake during the day. I was asleep 94% of my time in bed and the architecture was 10% Stage I, 65% Stage II, 6% Slow Wave and 19% REM. As I understand it, that 10% Stage I isn't too bad for someone with apnea and the 6% Slow Wave isn't great but it's enough to get by with. The 19% REM is pretty normal.

I wouldn't read too much into things until you know exactly for sure your pressure and type of machine.

I would also ask for a copy of the Sleep labs Reports from your doctor (call ASAP and ask for it, since your doctor has already given you the results you have every legal right to a copy and you will need it for future reference). Make sure you get a copy of the 2nd Titration study "pressure chart". This should show you in some kind of a table the starting titration pressure and corresponding events seen, they usually start at 5cm pressure and go from there.

Those Centrals & Mixed apneas are a concern, they can be true centrals or they can be "pressure-induced" centrals, meaning if the tech wasn't very good/experienced they could have caused those by not watching the pressure increments closely or increasing the pressure too fast. Usually when the first central is seen they don't increase pressure very much after that as increased pressure can increase the number of centrals seen.

By all means, pretty much demand the Remstar Auto w/Cflex if you can, that machine will do a pretty good job at avoiding or not triggering central or mixed apneas. If after you look at that pressure chart, I would limit the machines high pressure so it doesn't trigger any.

If they told me my pressure was like 16cm or 18cm (have no idea what your is going to be) and I had 10 or 20 centrals or the number of mixed events as seen on your report, I'd question if those were not pressure induced events (meaning the tech titrating you may have not been paying attention).

The Remstar Auto would/should confirm any pressure they found at the titration, I would not be surprised if it came up with a pressure being much less.

Snoredog wrote: I would also ask for a copy of the Sleep labs Reports from your doctor (call ASAP and ask for it, since your doctor has already given you the results you have every legal right to a copy and you will need it for future reference). Make sure you get a copy of the 2nd Titration study "pressure chart". This should show you in some kind of a table the starting titration pressure and corresponding events seen, they usually start at 5cm pressure and go from there.

The report I got yesterday was from my baseline diagnostic study. The second night (titration) report isn't there yet, that study was this past Tuesday night. Thanks for pointing out the "pressure chart", I'll be sure that's included in the copy I get from them next week.

Those Centrals & Mixed apneas are a concern, they can be true centrals or they can be "pressure-induced" centrals, meaning if the tech wasn't very good/experienced they could have caused those by not watching the pressure increments closely or increasing the pressure too fast. Usually when the first central is seen they don't increase pressure very much after that as increased pressure can increase the number of centrals seen.

Well, this wasn't a titration so I wasn't using pressure. I apparently just have a tendency to event they label as either central or mixed.

I'm actually not surprised at that. I suspect that my normal breathing pattern looks like it has brief central apneas in it. When I'm very relaxed (like at the end of an hour or yoga practice) I only take a breath every 22-26 seconds. And each breath has a short pause (maybe 3-5 seconds) at the end of exhalation before I have any urge to breathe in again. I wonder if the PSG technician and/or an APAP machine might think a 5-second pause with no inhalation or exhalation effort is a central apnea. For that matter when I'm asleep for all I know some of the pauses are longer than that.

If they told me my pressure was like 16cm or 18cm (have no idea what your is going to be) and I had 10 or 20 centrals or the number of mixed events as seen on your report, I'd question if those were not pressure induced events (meaning the tech titrating you may have not been paying attention).

I'll definitely be on the lookout for that when I get the report from this week's second night in the sleep lab. Based on my BMI, neck size and AHI I'd be surprised if I titrated to a pressure over 9-10cm but who knows.