Got answers? I've got questions!

[SleeplessInVirginia]

I have been lurking on this forum for a while, and have received a wealth of information on it, thanks everybody!
I will try to keep my story brief and my questions limited, but any help you can give me will be greatly appreciated!
I did my first sleep study 3 years ago and failed miserably. Wish I had known then that it isn't unusual not to sleep well, I thought I was the only one and was too embarrassed to pursue my problems. Fast foward to a couple of months ago when my husband finally made an appt. for me to see the doctor again because he is tired of not getting any sleep himself (constantly jostling me in my sleep to get me breathing and trying to sleep with my obnoxious snoring). I did my second sleep study about 3 weeks ago and slept a little bit better, but still not a full night's sleep. I guess their criteria is that you have to show a certain number of apneas in the first two hours of sleep for them to hook you up to the CPAP, and since I dozed on and off I didn't "pass" again. Interesting that in my first study I snored up a storm, but in my second one there was no snoring detected! When I was on my back my AHI was around 41, but when I was on my side it was very low and considered normal. My O2 dropped to around 84% and my longest event was 57 seconds. I know that I'm not considered "severe", but I have lived with this for so long and I'm tired of being exhausted all the time and having to nap during the day. After both tests I was told that weight loss would probably correct my problem. I'm 5'3" and weigh between 135-140 so while I could probably stand to lose a few pounds I really don't think that my weight is my biggest issue. My mother and brother both suffer from sleep apnea and they're both very slender. I have tried various methods (pillows, wedges, etc.) to try and make myself sleep on my side but I always seem to end up on my back no matter what. My doctor was very reluctant to send me back because he doesn't think my problem is that bad; he finally agreed to let me to go in for another night at the sleep clinic, but this time it is just for CPAP titration. As much as I dread the thought of being hooked up to a CPAP for the duration, at this point I will do anything to get a good night's sleep and feel like I can function like a normal human being during the day.
Here are my questions:
I am a flight attendant and make weekly trips to Europe, therefore I need something that is lightweight and easy to use over there. I am leaning towards the PB Goodknight420 because it looks nice and compact for packing. Since I do manage to sneak in an hour or so on my side every once in a while should I go with an auto or do you think I would be okay with a regular CPAP. Just thought it might be useless to have air breathing into me when I don't really need it as badly. Also, how important is having the humidifier? Because I fly so much I do tend to be a little bit "dry" and wonder if it would benefit me to have it. If anyone has the 420 can you tell me if the humidifier is integrated or if it uses a separate power cord. Since I'll be using an adapter I prefer to just have one to plug in. Also, does the 420 have an indicator if the mask is leaking? I also liked the looks (size) of the Aura but don't know if the integrated battery is heavy to tote around and how well it works. I don't think it's available in auto, just regular CPAP. I'll hold my questions to these for now, but again thank you for any advice you can give me!
Oops, so much for keeping it brief, sorry!

[Linda3032]

Hi, and welcome. Glad you "came out of the closet" and introduced yourself. I'm going to write some comments here as I read your message.

1. Losing weight doesn't correct sleep apnea.

2. An AHI of 41 is considered "severe" sleep apnea.

3. Your doctor needs to study up on his sleep apnea. 41 is bad.

4. Make sure you get a machine or adaptor that will work with European current.

5. Get an Auto. It can also be used as a straight cpap too, but not vice/versa.

6. Get the heated humidifier. Always.

I'll let some others address your other questions, as I don't know anything about machines other than my own.

Again, welcome, and good luck.

[Ric]

...After both tests I was told that weight loss would probably correct my problem. I'm 5'3" and weigh between 135-140 so while I could probably stand to lose a few pounds I really don't think that my weight is my biggest issue.

Weight and body mass index are somewhat correlated with the incidence of OSA, but not perfectly correlated, for sure. To suggest that it is the ONLY factor would be irresponsible, and is kind of "old-schoolish". In the "olden days" patients were sent home and told to lose weight and that would cure their problem. Sometimes that was true, and it worked. (Or they never came back). In your case it doesn't seem likely, given your bmi of 23.9 http://nhlbisupport.com/bmi/

That you have a family history of OSA is an important clue and should not be brushed aside.

That you report large differences in pressure requirements between side sleeping and sleeping on your back suggest you might benefit from a machine that is able to adapt to changing pressure requirement, quickly.

ok, there's my 0.0156852 Euros
http://www.xe.com/ucc/convert.cgi

-Ric

[SleeplessInVirginia]

[quote="Linda3032"]Hi, and welcome. Glad you "came out of the closet" and introduced yourself. I'm going to write some comments here as I read your message.

1. Losing weight doesn't correct sleep apnea.

2. An AHI of 41 is considered "severe" sleep apnea.

3. Your doctor needs to study up on his sleep apnea. 41 is bad.

4. Make sure you get a machine or adaptor that will work with European current.

5. Get an Auto. It can also be used as a straight cpap too, but not vice/versa.

6. Get the heated humidifier. Always.

I'll let some others address your other questions, as I don't know anything about machines other than my own.

Again, welcome, and good luck.

Linda,
Thanks for the reply. I didn't think that 41 was anything to sneeze at, but he was trying to tell me that since I didn't have many events when on my side that my overall wasn't considered to be that bad. The problem is, I spend the majority of my sleep time on my back! I'll just have to wait and see what happens at my study this week.
Thanks again!

[SleeplessInVirginia]

...After both tests I was told that weight loss would probably correct my problem. I'm 5'3" and weigh between 135-140 so while I could probably stand to lose a few pounds I really don't think that my weight is my biggest issue.

Weight and body mass index are somewhat correlated with the incidence of OSA, but not perfectly correlated, for sure. To suggest that it is the ONLY factor would be irresponsible, and is kind of "old-schoolish". In the "olden days" patients were sent home and told to lose weight and that would cure their problem. Sometimes that was true, and it worked. (Or they never came back). In your case it doesn't seem likely, given your bmi of 23.9 http://nhlbisupport.com/bmi/

That you have a family history of OSA is an important clue and should not be brushed aside.

That you report large differences in pressure requirements between side sleeping and sleeping on your back suggest you might benefit from a machine that is able to adapt to changing pressure requirement, quickly.


Thanks for your reply. I'm so new to all of the terminology and all of the different options out there, but I thought I would do better with the auto since my sleeping positions do make my events vary. I was looking at the new Remstar M series Pro and that looks very nice. I also like the fact that the pressure is less when you exhale with the c-flex.
So much to learn!
Thanks for the head start! BTW, love the Euro conversion!
ok, there's my 0.0156852 Euros
http://www.xe.com/ucc/convert.cgi

-Ric

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, auto

[Goofproof]

It would also be nice to get the software to monitor your progress, seeing as you Dr. doesn't have a clue about how bad off you are. Jim

Maybe you could get a Remstar auto w/software and a smaller one for travel, myself I would just let the APAP do it all.

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CPAPopedia Keywords Contained In This Post (Click For Definition): auto, APAP, Travel

[snoozie_suzy]

My O2 dropped to around 84% and my longest event was 57 seconds.

Not only did your AHI of 41 passed under the radar of your physician, so did your poor oxygen levels. An AHI can sometimes be deceiving. A person can have a low AHI but with each event if it lasts long enough, which yours did ( 57 seconds) that can be just as bad as someone who has twice the AHI, and in some cases be worse. Some people (myself included) do not have bad oxygen desaturations, I think the lowest mine dropped was 92%. But 84% which you quoted is NOT good.

You might need to think about switching sleep docs, if this doctor thinks an AHI of 41 is normal (anything over 5 is abnormal) and oxygen desaturations like yours are okay.

You might do better to have your Primary care doctor write you a script and buy your APAP on this website and start tracking your data yourself. There are a lot of people on this board who have had to take their own medical care into their own hands.

Good Luck and welcome to the board.

Suzy

[SleeplessInVirginia]

My O2 dropped to around 84% and my longest event was 57 seconds.

Not only did your AHI of 41 passed under the radar of your physician, so did your poor oxygen levels. An AHI can sometimes be deceiving. A person can have a low AHI but with each event if it lasts long enough, which yours did ( 57 seconds) that can be just as bad as someone who has twice the AHI, and in some cases be worse. Some people (myself included) do not have bad oxygen desaturations, I think the lowest mine dropped was 92%. But 84% which you quoted is NOT good.

You might need to think about switching sleep docs, if this doctor thinks an AHI of 41 is normal (anything over 5 is abnormal) and oxygen desaturations like yours are okay.

You might do better to have your Primary care doctor write you a script and buy your APAP on this website and start tracking your data yourself. There are a lot of people on this board who have had to take their own medical care into their own hands.

Good Luck and welcome to the board.

Suzy


Hi Suzy,
Thanks for the reply. I have been trying to decipher my sleep study and as I said, all of this terminology is so new to me I don't know half of what I am reading. They said that I had slept on my back, my left side and my right side in the study. They also broke down my AHI as to which position I was in, and then averaged my AHI. As I said, my AHI when I was on my back was 41 but when they averaged the much lower numbers when I was on my side then my total AHI dropped down to just under 20. I know that I sleep on my back the majority of the time (my poor husband will attest to that), and it was a fluke that I slept on my side during the study. I'm also amazed that I didn't snore at all during my study, usually I can knock the pictures off the walls! I'm worried that I will have a problem with my insurance company paying for a machine if he has worded his diagnosis poorly. I'll keep my fingers crossed and see what happens. I love my Primary care doctor and will go to him if I need to; I didn't realize that was an option. He wanted me to get a CPAP after my first test 3 years ago but I was naive.

[GoofyUT]

You've come to the right place for help and support. Lotsa knowledgeable folks here.

Couple of quick things:

Given the vast differential between your AHI sleeping on your back and that sleeping on your side, it would be VERY worthwhile for you to discuss an Auto machine with your PCP. The dilemma that you'll face though, is that you need to have 20 events an hour to qualify under Medicare rules (I believe) which are the rules that most other insurances follow. Nonetheless, the 41 events that you had sleeping on your back should more than qualify you. I don't believe that there is any need to average the number of events or provide a "total" AHI. Just hit the threshold of more than 20/hour, which you certainly did.

Now, given your travel requirements, the only Auto machine which seems to fit the bill you described in terms of small size, integrated humidifier and single power cord is the ResMed S8 Vantage AUtoSet/H3i humidifier combination, which I use and which I find to be very nearly silent, extremely well built, with a neat, truly integrated heated humidifier and a single power cord. Its also sorta hip looking with a VERY hip carrying case that looks mostly like a modern laptop computer case in royal blue.

The Puritan-Benett Goodknight PB420E is also VERY small, and has the feature of measuring the pressure at the mask rather than at the machine like the rest do. But, the humidifier for the PB420E is sort of klugey.

Respironics M series would be a good bet, but the Auto version won't be out till late June at the earliest, and if you went that route, you'd be one of the first quality control testers for this brand new machine. The current REMSTAR Auto is MUCH larger and the travel case looks like a suitcase itself.

Hope this helps!

Chuck

[Bingo]

Depending on exactly how your sleep study actually played out, I would really not be so quick to jump all over your Doctor as being a really "poor" or "uneducated" doctor.

Granted, you have stated you sleep most often on your backe. However, that may not neccessarily have been borne out by your sleep study.

There is a great deal of information we are missing to really make any significant decisions for you in regards to the quality of care you are getting.

Example - you stated you have an AHI of 41 while on your back, but a normal AHI when you are on your side. Since an AHI is an AVERAGE ratio, that could easily bring your TOTAL AHI down to around 20. This is NOT considered "severe" by many standards. In fact, up until last year, it would have been too low to qualify for any equipment under MANY insurances.

Also, your O2 sats dropping to 84 also is not neccessarily anything to be dramitically concerned about. Moreover, there are several critical pieces of information that are needed along with that number before jumping to any conclusions. It is somewhat low, yes. However, in the overwhelming majority of cases in younger patients, this is a very momentary downward spike. The more important figure is the average O2 sat. This is a much better picture than the lowest sat. Yes it is important on it's own, but it is only one piece of a much larger puzzle.

As far as the other questions, I am unfortunately just starting out using this equipment myself, so I do not have much in the way of suggestions for you!

Only suggestion I would make is that yes, a humidifier would most likely be a good idea for you. If you do not like it, simply don't use it. Some patients need them, some do not. It is primarily just a comfort/preference choice.

I would also suggest speaking with your physician about the good point another poster raised about the possible differences in the pressure needed when you sleep on your side vs. when you sleep on your back. You may indeed be someone who can really benefit from an auto-titrating machine.

Good luck!

Bingo

[snoregirl]

Just a few things to add. I too have differences in sleeping on my side vs. back as well as weight flux. My insurance company couldn't care less and didn't want to give me an Auto. I got it by working on the DME and stalling until they agreed (2 months at least). Insurance company doesn't know the difference, billing code is the same. They denied me at the third level of appeal but what they don't know now won't hurt them. They will see the E0601 code and be clueless.

My sleep doc (one of those that you never meet who is contracted to read my sleep study) wrote stuff in my report like I should sew tennis balls into a tight tee shirt. Over my dead body will I sleep like that. Not even talking about the tenis balls, I mean a tight tee shirt!! AND my sleep study showed that I had events while sleeping on my side anyway.

My regular doc that I love wrote the auto prescription. Don't need the sleep doc for anything. Just have to pay him to write a bunch of junk in the report. The numbers speak for themselves if you care enough to figure them out.


If I had lost the auto CPAP fight, I was planning on getting the Auto myself from CPAP.com, and letting the insurance pay for the straight CPAP then after meeting the compliance (3 months) I was going to sell it on Ebay or Yahoo Auctions to cover some of my out of pocket on the APAP. What the heck, if they want to be like that.....I will play their game to the best of my ability.

Good luck with your insurance maybe they won't give you trouble on the APAP. I believe (I have tried CPAP and APAP) with my pressure of 13, I am better off with 10 blowing most of the night and 13 only some of the night. AND even if you don't like APAP you can use the machine in straitght CPAP mode so no loss.

Heated Humidifier -- definately. Get it on the Prescription.

GET YOUR PRESCRIPTION hardcopy. Hold it. It is yours. You can use it again if you want something different. Don't let the doc's office fax it to some DME and you never get a hardcopy. Most doc's offices can't imagine what someone would do with a prescription for APAP or CPAP. They are so used to DME's and rental etc. Not all of us are happy with the system that exists and having the prescription gives you power to do what you need to do for you.

Good luck!!

[SleeplessInVirginia]

I have to laugh at your post, because my doctor recommended the same exact thing. They didn't specify a "tight" t-shirt, but they did say to try using pillows and sewing a sock full of tennis balls to the outside of my pajamas. There is no way I could sleep with pajamas full of tennis balls, and I did try all of the different pillow and wedge combinations before to no avail. My husband has told me that I have snored and had episodes on my side and my stomach, guess my body just wasn't cooperating the night of the study.
They also told me not to drive if I was drowsy which I had already figured out for myself. I know the signs when I'm very sleepy, and have pulled off on the side of the road or at a rest stop and taken a power nap many times.
If the CPAP provides any relief then I will fight insurance tooth and nail to get them to approve it. If all else fails, my husband said he would pay anything just for both of us to get a normal night's sleep.
Thanks for the info!

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Power

[Linda3032]

We are going to assume you have sleep apnea here.

1. As snoregirl said, get the prescription from the doctor IN HAND. Don't let the doctor fax it to a DME (durable medical equipment) store.

2. Next, contact this site and see if they will deal direct with your insurance company:

http://www.billmyinsurance.com/

3. If they will, then you can buy your own equipment through cpap.com (this forum's sponsor), and buy whatever machine you decide upon. Billmyinsurance will do the filing with the insurance company on your behalf.

4. If your titrated pressure (from the study and written on your prescription in most cases) is 10 or less, you would be very wise to get an Auto machine.

If your titrated pressure is 15 or above, you might be better off getting a BiLevel machine. It has more of exhale relief than standard cflex.

5. Respironics makes very good machines. They are a bit heavier and bulkier however. If you go with Respironics you would want a Remstar Auto with cflex and heated humidifier. Or a Respironics BiPap Auto with heated humidifier.

6. Masks are the hardest part of therapy - finding the right one. You might be better off trying the nasal pillows right off the bat. Respironics has a new one called "Comfort Lite 2". Many in this forum have tried it and are having good luck with it. It has both a nasal mask and either pillows or prongs. My advice would be to get the mask and pillows in medium & large (not small & medium).

7. But then you have to deal with "rainout". Oh My. The list goes on and on. You can do a search for rainout for more info.

[SleeplessInVirginia]

Just wanted to post a follow up. I went in last night for my CPAP titration. I hadn't really been nervous about going, but I have to admit that once I was laying there and they started hooking the CPAP up I started to get a little bit antsy. Didn't last too long though, thank goodness. They used straight CPAP, although the machine was CPAP and bi-level. I was surprised how warm the air was, is that from the humidifier? I thought it was much more tolerable than cold air would be. They gave me a choice of masks and I chose the Nasal Aire II because the prongs looked less claustrophobic than a mask. Nasal Aire was nice, but the tubing wrapped around my ears was a little uncomfortable. It took me a long time to get to sleep, my biggest problem was all of the pressure on the exhale. Every time I exhaled my head would throb. Finally passed out and woke up a couple of hours later with a start. I thought I had pulled my mask off, and was searching in the dark trying to figure out how to reconnect it. The tech came in and laughed and said it was still connected but I had probably opened my mouth. She came in shortly after that with a chin strap because I was indeed opening my mouth. All in all it was a pretty good experience. The one thing I noticed this morning when they woke me up was that I didn't have that foggy feeling I normally have in the morning, AND I didn't go back to bed when I got home for a morning nap. Maybe there's hope yet!
After lots of research I think I"m going to go with the Resmed EPR S8 and the Swift Nasal Pillows. I have debated back and forth between the EPR and the Remstar C-Flex, but the C-Flex looks much bigger for travel purposes. I love the EPR feature, but know that it can't be used in auto mode. BTW, I slept on my back for the entire study last night so all of my stats and AHI were consistent. The tech did say that she upped my settings a few times, but she didn't tell me what my final setting was.
I asked what the protocol was now that my study is complete, and she said that they would send my results to my doctor and a machine and mask would be ordered for me. I told her that I wanted the final say in my machine and mask choice and she didn't know how they actual did it. I'm going to call my doctor later this morning just to avoid any unexpected glitches or getting a machine that I really don't want.
Anyway, that's the latest installment. Thanks again for all of your help!

[oldgearhead]

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