Potential New CPAP User- Lots of Questions!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Thatgirl
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Potential New CPAP User- Lots of Questions!

Post by Thatgirl » Thu Sep 18, 2014 1:11 am

Hi Everyone!

So glad to have found this group. I can tell just from the posts I've read already that this place is a wealth of information!

A little background:

Last year I was having a respiratory procedure done and while I was sedated, they noted that I had apnea episodes. I was suggested to go get a sleep study. I have no symptoms of sleep apnea. I don't snore according to people who have witnessed me sleep. I don't have daytime fatigue unless I get less than 6 hours of sleep in a night, and I wake up feeling refreshed. I had the sleep study to appease my doctor, thinking it would be fine. It showed mild-moderate OSA, though I'm not sure on specific numbers.

I was very resistant to the idea of a CPAP. I tried weight loss with mixed success. I lost 20 pounds but ended up gaining it back. I had another sleep study. Again, I don't know the numbers, but moderate OSA. I continued to be resistant to the idea of CPAP, but my doctor insisted. I went for a titration sleep study. They ordered it as a regular sleep study mistakenly. The tech agreed to call the on call sleep doctor for the center, when I told her that I had already had two regular sleep studies, and he switched it to a split night sleep study. I eventually fell asleep expecting to be woken up to start the CPAP after a few hours. I woke up at 2am and still was not asked to do CPAP. I asked the tech what was going on and she said that I had next to no apnea and did not meet the criteria to switch to the CPAP portion of the split night study. I told her that I did not want to do this again and begged her to let me try the CPAP. She agreed. We started with a nasal pillow mask, and it choked and gagged me. I felt like I had so much air going up my nose I could hardly breath - which I know sounds ironic! I was gagging and coughing the whole 10 minutes it was on. She switched me to a nose/mouth style mask. I felt so claustrophobic I panicked and tried to rip it off, struggling to get it off, setting me into more of a panic. I shook and cried. It was very stressful and I left the sleep center at that point.

I went back to my doctor and she suggested I do a nasal cannula at night with 2 lpm to try and prevent hypoxic episodes. I agreed and tried this for several months. I had a high copay and kept waking up with the O2 tubing on the floor. It felt like a waste of effort and money. I sent it back.

My doctor is insistent I have some treatment, so we're back at CPAP. She asked me to at least TRY a CPAP. She thinks I'll do better in my home environment. She wrote me a script for Ambien to help me sleep with it on. I feel sick just at the thought. She said that she thinks my apnea is so variable that just leaving me on an auto titrating CPAP is a better bet, so that I don't feel overwhelmed with air when I don't need it. I'm still dreading it.

Now for the whole series of questions:

1. I've been reading on here about the best auto CPAP models. I see the Resmed S9 Autoset mentioned over and over as being one of the best. I asked the CPAP store about this, and they said that they're onto the S10, and the S9 is obsolete? Then another person there told me they won't even have the S10's for another month. Is this just an upgraded S9? Is this the way to go for what I need?

2. The person from the CPAP store told me that my AHI on the study was 5.3 and that I probably don't even really need CPAP, and that with my history of not tolerating, this may be a waste of time and money. Thoughts?

3. She also said despite the low AHI, I still had a high number of "sleep disturbances" and even desatted to 79%. My thought is that the 79% could have been false from a poor finger reading. Also, could something else be causing the "sleep disturbances" beside OSA?

4. If I do get the CPAP, I really want to be able to analyze a lot of the data myself. Is this easy to do with the S10? I'm a huge data fan- the more the better!

Thanks in advance! I'm sure I'll think of more questions as I go!

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kaiasgram
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Re: Potential New CPAP User- Lots of Questions!

Post by kaiasgram » Thu Sep 18, 2014 4:04 am

Thatgirl -- Welcome to the forum.

The S9 series is not obsolete. The newer S10 machines are available from some DMEs including some online sellers. SleepyHead is not yet ready to read data from the S10 machines but I believe ResScan can.

Nothing wrong with the S9 line, and right now it's a little less expensive because it's no longer the most current model. But it's hardly obsolete!

Whatever machine you might go with, first look up forum member janknitz and read her blog on data capable machines -- there are "brick" models in both the ResMed and Philips Respironics machines that you want to avoid. Don't trust a DME rep who tells you that "Yes your machine has data."

You ought to get a hold of your sleep study report(s) and you can get feedback about them here. From what you've described it does seem like there's enough indication that cpap therapy is appropriate. "Mild" refers only to frequency of events, but sometimes those events can be lengthy and involve some pretty significant oxygen drops. It's possible that you didn't start having apnea events early enough during the split study to do the titration. That happens sometimes -- people leave the split study thinking they're home free (no apnea) because the tech didn't come in and hook them up, then they find out they just didn't have enough events "in time" to complete a titration that same night. Since you were diagnosed in both prior sleep studies with mild to moderate, I think the evidence points to a pretty reliable diagnosis

Don't worry about the panic reaction to having the mask slapped on you and the pressure blasted at you. I had a panic reaction the first time too. When you get your machine home and find a mask that you can deal with, there are some helpful tips we can give you on how to get used to the sensations. Being in control makes a huge difference in adjustment, and for many of us, our first experience was not one of feeling in control!

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archangle
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Re: Potential New CPAP User- Lots of Questions!

Post by archangle » Thu Sep 18, 2014 6:03 am

Welcome Thatgirl.

The new ResMed line is the AirSense 10, not S10, although a lot of people call it that. I've been using the name "A10."

I think right now it's about a tossup whether the newness of the machine outweighs the risk of there being problems with the new model. I wouldn't worry about it that much.

There is info on which models to get in my signature line. Avoid the ResMed S9 Escape and Escape Auto. If you go Respironics, avoid the PRS1 SE, Plus and DS150 models. Get either the the Pro or Auto if you get a PRS1 machine.

The Respironics and ResMed machines are roughly a tossup as to which is best. Both have their good and bad points.

Don't worry about the panic, etc. You'll get over it.

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englandsf
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Re: Potential New CPAP User- Lots of Questions!

Post by englandsf » Thu Sep 18, 2014 8:22 am

If your AHI is indeed 5.3 that is right at the limit of apnea needing treatment which is normally set at 5.

5 or below is regarded as normal. Many health insurance companies would not even pay for a machine at that level.

I'd go back to your sleep doc, ask to review the study in detail then decide what to do.

_________________
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tortoisegirl
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Re: Potential New CPAP User- Lots of Questions!

Post by tortoisegirl » Thu Sep 18, 2014 8:36 pm

I agree to have a follow up with a sleep specialist before investing in a CPAP machine. Do you see a sleep specialist now? If not, it may be worth making an appointment with one first. It sounds like you may not be motivated enough to try CPAP at this point. Although sleep apnea is a serious condition, if the current study showed an AHI just over 5 and there isn't any reason to doubt it (such as if it only had a couple hours of data which didn't include REM sleep or sleeping on your back, both of which can worsen apnea), then I don't think its really applicable for your doctor to use any sort of scare tactics and try to force you into it. At that AHI level its typically only a recommendation, such as to try to improve daytime function.

Since your first two studies showed a higher level of events (moderate typically would mean an AHI of over 15), I'd specifically ask your doctor why this current study showed significantly less. I suspect it may have been some of the factors I mentioned, such as a short study time (before the CPAP was started), which could have not included significant REM sleep. If your apnea was truly closer to that moderate range, its a different story though. That is something that needs to be treated. Even some people with an AHI below 5 have said they benefited from CPAP.

I'd be sure you are being truthful with yourself about not having any symptoms though, and not just trying to tell yourself its ok to not to try CPAP. There could be something else going on, but the apnea would likely need to be treated to rule it out first. For many apnea is all they have to deal with in the sleep department. For some, they may have two or more conditions at work. By sleep disturbances do you mean arousals? Although apnea can definitely cause them, beyond that, it can be tough to determine there cause. Some are normal for everyone, as is having some apnea events.

You need to get info straight from your insurance as to their requirements to cover CPAP. For me and many others with an AHI between 5 and 15, extra documentation from my doctor was required, to show that I had symptoms (related conditions such as a heart problem could also qualify someone). Often a sleep doctor will ask you to fill out a short questionnaire called the Epworth Sleepiness Scale. You don't want to just go on the word of the DME that it was pre-approved. You also want to confirm your insurance benefits (if you have a deductible, what percentage co-insurance will be due, and even if they cover DME...a small amount of policies don't even cover it).

I think its a toss up on the S9 vs. S10 or whatever you call it. With either, I'd recommend the Autoset model, which is basically a mini sleep study every night. If you go for the newer one, they have a "for her" model that has an extra mode. If it was me, I'd be sure to get that "for her" model if I got the S10. I'd probably lean towards the new model as even though the S9 isn't obsolete, it isn't the newest model, and the S10 has some new features (although nothing that appears to improve the function of it...mostly just the appearance). Best wishes.

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KW

Re: Potential New CPAP User- Lots of Questions!

Post by KW » Fri Sep 19, 2014 9:50 am

I have had apnea for 10 years and due to some recent health issues I decided to do a sleep test and was surprised how bad my apnea was. 58 times an hr. Average 30 secs ea. 65 sec longest. Not good.
Took home an S9 the day I got the sleep report and my ahi immediately dropped to <2.0. Used diligently every night for 1 week, then just travelled to USA for 3 weeks and used for 90 percent of nights while travelling. Then used for 1 more week after retuning home and was them provided with an S10 to trial which I have used now for 6 nights. So I have only used cpap for 6 weeks but in that short time have trialled the S9 and S10 and I wish to provide the feedback that it is really working and I believe I am starting to see significant benefits such as no fatigue in morning or afternoon when I usually hit a wall and an improved immune system and best of all I am losing weight again. I feel pretty lucky that cpap has been relatively easy to adapt to as I know many people struggle to find a mask that works. I kind of just put it on and have been able to average close to 7 hrs a night for whole trial period so far. I am not sure if I will buy the S10 though as the S9 was quieter and to be honest I can't say I feel the S10 is delivering better sleep quality or not.
I like the new look, and it has more statistics on display but as a person who seems to be able to sleep ok using cpap I don't really need to view statistics anymore. I wake up and know I had a good sleep and already trust that it is doing its job. In last 6 weeks my ahi average is reported to be close to 1.0 and that is pretty amazing. Other S10 info, easy to fill up humidifier but I seem to use way more water than with S9 and I am not sure if that is good or bad. It doesn't feel any different. Ergonomics of S10 are better. S10 seems to blow more pressure so I will be looking to optimise settings in my last week of trial as pressure gets a bit high, and I never felt this with S9. Overall though I am impressed with cpap and will use it now forever if I have to but hope I can lose enough weight to not need it in future? If anyone has any experience with how losing weight can help you be able to stop cpap in future, I would be very interested in hearing your story. Thanks.

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englandsf
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Re: Potential New CPAP User- Lots of Questions!

Post by englandsf » Fri Sep 19, 2014 11:27 am

Weight loss will possibly only improve apnea in the young, muscle tone is another big issue the older you get. I am 61 and need to lose 50 pounds - but even then my sleep doc says I should not expect my apnea to go away (40 AHI without CPAP, 1-2 with!)

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Sleepyhead SW. NeilMed and Alkalol Nasal rinses. Veramyst. AutoPAP 11-20 cms. Started June '14, untreated AHI 31-38, with PAP around 1.

kW

Re: Potential New CPAP User- Lots of Questions!

Post by kW » Sat Sep 20, 2014 4:14 pm

Thanks for the reply on, is it possible to not need cpap in future if you lose enough weight. I have heard it depends on what type of apnea's you have.

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LSAT
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Re: Potential New CPAP User- Lots of Questions!

Post by LSAT » Sat Sep 20, 2014 10:36 pm

kW wrote:Thanks for the reply on, is it possible to not need cpap in future if you lose enough weight. I have heard it depends on what type of apnea's you have.
Most likely...NO

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zoocrewphoto
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Re: Potential New CPAP User- Lots of Questions!

Post by zoocrewphoto » Sun Sep 21, 2014 1:43 am

Thatgirl wrote:Hi Everyone!


3. She also said despite the low AHI, I still had a high number of "sleep disturbances" and even desatted to 79%. My thought is that the 79% could have been false from a poor finger reading. Also, could something else be causing the "sleep disturbances" beside OSA?

You really need to get a copy of those sleep studies. As mentioned the terms mild and moderate refer to the average number of events per hour. It is not the only important number.

A couple years ago, I got my machine, and after my 6 week followup, I let my mom use my machine for a couple partial nights. She had been using cpap for over 20 years, but didn't feel it was helping much. My new machine (Resmed S9 autoset) had data capabilities. The first night, I set it to 10, which was her prescribed pressure. Her ahi after 4 hours was 3. Sounds good, right? Then I downloaded the data. She had a cluster of events over 30 seconds each and one of them was over a minute long. When you stop breathing that long, your oxygen goes down a lot.

You may be having longer events. Your diagnosis says mild because you don't have a lot of events, but longer events can be far more dangerous. My own ahi is 79, very severe. But my oxygen saturation never went below 84%. Yours went down further than mine. So, you probably had longer events. This gives you a false perception of how severe you may really be. You need to see those sleep studies so that you can see the graphs and get the context of those numbers.

Oh, and my mom does NOT snore. Ever. She just stops breathing for more than a minute at a time. I used to stand there and watch her, trying to see her chest move. It would finally move, no gasp or snore. She frequently looked dead when she wasn't using her machine. After the partial nights with my machine's data, she was given a new machine with a range of pressure 10-15, and she feels a LOT better now.

I know it is really hard to get used to the idea of CPAP, and it is a challenging treatment to adapt to, but we will help you. And you will feel much better.

Do you use the bathroom a lot at night?
Do you have nightmares of being chased, drowning, other scary situations?
Do you have headaches in the morning?
Do you feel grumpy easily?
Do you have high blood pressure?


These are all things that improved for me once I started cpap treatment.

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Thatgirl
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Re: Potential New CPAP User- Lots of Questions!

Post by Thatgirl » Sun Sep 21, 2014 10:19 pm

Thanks so much for all of the responses!

I'll try and respond to everything.

Sleep specialist? I'm seeing my pulmonologist who also does sleep medicine.

The understanding is the last sleep study I had definitely was the best, the other two were worse. I think it is probably related to less REM sleep. My pulm has said right along that I have no apnea until I'm in REM.

I truly do feel I have no symptoms. I don't pee except once at night. My BP is always 100/70 unless I'm on steroids (I have severe asthma also). I'm not exactly a morning person, but my sleep is hard to judge because I work rotating night and day shifts.

I am glad someone mentioned the "Autoset for Her" model. That was a question I forgot in the initial post. I was wondering if that really did have advantages or if it was just a gimic/prettier machine.

I'm still not thrilled with the idea of going on CPAP, but if I really need it, I'll do what I have to do to stay healthy.

I definitely agree that I need to get copies of all of my sleep studies. The DME center is obtaining them. I'll have to see if they can give me a copy.

My insurance has no AHI requirements for CPAP, apparently, and doesn't require compliance monitoring.

Another question- the DME center I'm dealing with only seems to carry one model of CPAP at a time? Is this common? Might I need to shop online to get a specific model?

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Thatgirl
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Re: Potential New CPAP User- Lots of Questions!

Post by Thatgirl » Sun Sep 21, 2014 10:27 pm

tortoisegirl wrote: By sleep disturbances do you mean arousals? Although apnea can definitely cause them, beyond that, it can be tough to determine there cause. Some are normal for everyone, as is having some apnea events.
This is what the DME rep called them when she was reading the report to me.
You need to get info straight from your insurance as to their requirements to cover CPAP. For me and many others with an AHI between 5 and 15, extra documentation from my doctor was required, to show that I had symptoms (related conditions such as a heart problem could also qualify someone). Often a sleep doctor will ask you to fill out a short questionnaire called the Epworth Sleepiness Scale. You don't want to just go on the word of the DME that it was pre-approved. You also want to confirm your insurance benefits (if you have a deductible, what percentage co-insurance will be due, and even if they cover DME...a small amount of policies don't even cover it).
I did talk to my insurance. Rent to own over 13 months with a 20% copay. No deductible. The part that is sketchy to me, however, is that the DME told me the CPAP is rent to own, and the humidifier is bought outright, so my start up cost will be over $100, but the humidifier is part of the machine, so if I stop using the CPAP, it all goes back even though I bought the humidifier person. I told her that sounded like a scam, and she said she'd look into renting the humidifier, like the CPAP. I did the Epsworth Sleepiness Scale at the sleep studies. It said "low fatigue levels" or however it's interpreted.
I think its a toss up on the S9 vs. S10 or whatever you call it. With either, I'd recommend the Autoset model, which is basically a mini sleep study every night. If you go for the newer one, they have a "for her" model that has an extra mode. If it was me, I'd be sure to get that "for her" model if I got the S10. I'd probably lean towards the new model as even though the S9 isn't obsolete, it isn't the newest model, and the S10 has some new features (although nothing that appears to improve the function of it...mostly just the appearance). Best wishes.
Thanks. I think the Airsense 10 Autoset for Her is what I'll seek. The DME said that all models have auto titration now, though?

_________________
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Additional Comments: Vauto EPAP min 5, IPAP max 25, PS 6
Aircurve 10 Vauto, Dreamwear mask, Vauto mode: EPAP min 5, IPAP max 20, PS 6
Usually ~EPAP 6, IPAP 12
Loving Sleepyhead!

Thatgirl
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Re: Potential New CPAP User- Lots of Questions!

Post by Thatgirl » Sun Sep 21, 2014 10:28 pm

KW wrote:I have had apnea for 10 years and due to some recent health issues I decided to do a sleep test and was surprised how bad my apnea was. 58 times an hr. Average 30 secs ea. 65 sec longest. Not good.
Took home an S9 the day I got the sleep report and my ahi immediately dropped to <2.0. Used diligently every night for 1 week, then just travelled to USA for 3 weeks and used for 90 percent of nights while travelling. Then used for 1 more week after retuning home and was them provided with an S10 to trial which I have used now for 6 nights. So I have only used cpap for 6 weeks but in that short time have trialled the S9 and S10 and I wish to provide the feedback that it is really working and I believe I am starting to see significant benefits such as no fatigue in morning or afternoon when I usually hit a wall and an improved immune system and best of all I am losing weight again. I feel pretty lucky that cpap has been relatively easy to adapt to as I know many people struggle to find a mask that works. I kind of just put it on and have been able to average close to 7 hrs a night for whole trial period so far. I am not sure if I will buy the S10 though as the S9 was quieter and to be honest I can't say I feel the S10 is delivering better sleep quality or not.
I like the new look, and it has more statistics on display but as a person who seems to be able to sleep ok using cpap I don't really need to view statistics anymore. I wake up and know I had a good sleep and already trust that it is doing its job. In last 6 weeks my ahi average is reported to be close to 1.0 and that is pretty amazing. Other S10 info, easy to fill up humidifier but I seem to use way more water than with S9 and I am not sure if that is good or bad. It doesn't feel any different. Ergonomics of S10 are better. S10 seems to blow more pressure so I will be looking to optimise settings in my last week of trial as pressure gets a bit high, and I never felt this with S9. Overall though I am impressed with cpap and will use it now forever if I have to but hope I can lose enough weight to not need it in future? If anyone has any experience with how losing weight can help you be able to stop cpap in future, I would be very interested in hearing your story. Thanks.
Glad to hear of your success!

_________________
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Additional Comments: Vauto EPAP min 5, IPAP max 25, PS 6
Aircurve 10 Vauto, Dreamwear mask, Vauto mode: EPAP min 5, IPAP max 20, PS 6
Usually ~EPAP 6, IPAP 12
Loving Sleepyhead!

Thatgirl
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Re: Potential New CPAP User- Lots of Questions!

Post by Thatgirl » Sun Sep 21, 2014 10:29 pm

englandsf wrote:Weight loss will possibly only improve apnea in the young, muscle tone is another big issue the older you get. I am 61 and need to lose 50 pounds - but even then my sleep doc says I should not expect my apnea to go away (40 AHI without CPAP, 1-2 with!)
I am young.

_________________
MachineMask
Additional Comments: Vauto EPAP min 5, IPAP max 25, PS 6
Aircurve 10 Vauto, Dreamwear mask, Vauto mode: EPAP min 5, IPAP max 20, PS 6
Usually ~EPAP 6, IPAP 12
Loving Sleepyhead!

Thatgirl
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Re: Potential New CPAP User- Lots of Questions!

Post by Thatgirl » Sun Sep 21, 2014 10:31 pm

zoocrewphoto wrote: Do you use the bathroom a lot at night?
Do you have nightmares of being chased, drowning, other scary situations?
Do you have headaches in the morning?
Do you feel grumpy easily?
Do you have high blood pressure?


These are all things that improved for me once I started cpap treatment.
None of those things, except the dreams. I've always been a vivid dreamer, and when I'm going through a hard time with my asthma, I'll dream that I can't catch my breath. It's only when my asthma is bad during the day, too, though.

_________________
MachineMask
Additional Comments: Vauto EPAP min 5, IPAP max 25, PS 6
Aircurve 10 Vauto, Dreamwear mask, Vauto mode: EPAP min 5, IPAP max 20, PS 6
Usually ~EPAP 6, IPAP 12
Loving Sleepyhead!