Questions about study and need for cpap

[HealthyandHopeful]

Hi,

So glad to find a place to come ask questions! I never thought I had any kind of sleep apnea problem! I have felt tired during the day for years though. I was diagnosed with adrenal fatigue about 7 years ago and took a regimen of vitamins for that. I've taken cortisol at times. I get my bloodwork checked regularly for hormones and hypothyroid. A couple of months ago my doctor said that all of my bloodword looks find and there is no reason for me to feel tired during the day, let's do a sleep study just to cover all the bases. I agreed, although I thought it would be a waste of my insurance's money (I didn't have to even pay a co-pay). The first sleep study was ridiculous and because of the circumstances, I didn't sleep there. They said the study showed I had sleep apnea, but I wasn't convinced and finally they agreed to do the study over at a better facility.

My sleep study results (copied from report, and parts in bold were bold in report):

Description of Sleep: The total recording period was 431.0 minutes. The total sleep time was 368.5 minutes with sleep efficiency of 85.6%. Sleep onset latency was 22.5 minutes. Latency to persistent sleep (10 minutes of uninterrupted sleep) was 22.5 minutes. Arousals and awakenings occurred on an average of 23.8 per hour and her sleep architecture was fragmented. She had 2.6% delta sleep. REM latency was 83.5 minutes and REM sleep was 18% of total sleep time. The total time awake after sleep onset was 39.5 minutes.
--1.8 Apneas per hour
--AHI total = 9.4 (Non-REM AHI of 1.8 ) - (REM AHI 44.2)
--In addition to the apneas and hypopneas, she had 4.4 respiratory-effort related arousals (RERAs) per hour
--RDI total = 13.8 -(Non-REM RDI of 7.0) - (REM RDI of 45.1)
She spent 10.2% or 37.5 minutes sleeping supine. The RERA events were worse when supine (RDI was 8.0 when supine). The obstructive events were worse during REM sleep (REM-AHI was 44.2). Lowest SaO2 was 79%. Her SaO2 was less than 90% for 16.6 minutes of sleep.

Diagnosis was Mild Obstructive Sleep Apnea Syndrome.


My note: I rarely sleep on my back. I don't know why I did at the study, except maybe to have part of the report show how I sleep on my back. The strange thing was that I had a really vivid series of dreams during that time on my back and even remember having a feeling like I couldn't move. Was strange.

A couple of weeks later I had the study with the CPAP. Results are as follows:
Description of Sleep: The total recording period was 414.0 minutes. The total sleep time was 351.0 minutes with a sleep efficiency of 84.8%. Sleep onset latency was 15.5 minutes. Latency to persistent (10 minutes of uninterrupted sleep) was 18.0 minutes. Arousals and awakenings occurred on an average of 9.7 per hour and her sleep architecture was fragmented. She had 4.7% delta sleep. REM latency was 116.0 minutes and REM sleep was 16.1% of total sleep time. The total time awake after sleep onset was 47.5 minutes.

CPAP Titration:
--Mask used: medium ResMed nasal mask
--Supine sleep = 0.0%
Nasal CPAP was initiated 5.0 cmH20 and titrated upwards. Various pressures were titrated and the highest pressure attempted was 7.0 cmH2O. She slept at this pressure for 161.0 minutes, 12.4% of that being in REM sleep. AHI at this pressure was 0.0.

From the charts:
CPAP at 5/0/0 I had 9 Hypopneas, and 0 of each Central Apneas, Obstructive Apneas, Mixed Apneas; so AHI was 2.8
CPAP at 7/0/0 I had 0 of any of these.


The part that really got my attention was the SaO2 level dropping to 79% even though very briefly. I even bought an oximeter to use to record my oxygen levels at night because I was skeptical. My oxygen levels on a couple of nights went only to about 87%, one night went to 79% and another night went to 67%, so I took seriously the need for the CPAP machine. I did use the oximeter the first night I had the CPAP and even though I didn't sleep well my oxygen levels stayed in the 90s. The graph comparisons were amazing.

The story of getting the CPAP machine is long and I am about to trade for a different one. But from these results, can anyone tell me if my problem is worth using the CPAP machine?

I know my results are mild, but using the CPAP is a huge decision and change for me.
Thanks for reading this and for any help that can be given!!

[Julie]

Hi, I think you, like so many of us at first, would love someone to tell you you don't need a machine. And maybe you can get away without using one for a time, maybe lose a few lbs (it can help, if not 'cure'), etc. etc. BUT, you said yourself you're always tired, your 02 levels dropped definitively, you felt great after using the machine when you did it, and who knows what the future holds (none of us are getting younger). And how much fun is someone half asleep a lot of the time"?

So really, what do YOU think you should do?

[SleepingZ]

I was in a similar situation with mild sleep apnea after I did the sleep study, but when the doctor double checked my oxygen levels at 75% during the test, he changed the diagnosis to Mild to Moderate sleep apnea. I have done a couple of trials with the auto CPAP machines; it is hard to tell if it helps when I am using it. ... But when I return the machine, after just one night without CPAP the next day I can feel drowsy until the middle of the afternoon!
On another note, I was talking to another doctor about something entirely different one day, when I mentioned that I did not know if my oxygen levels during the sleep study were really that important. He replied that if my oxygen levels were at 75% right there in his office, I would have to be transferred to intensive care... I got the message.

[kaiasgram]

HealthyandHopeful, hello and welcome to the forum.

You said

My oxygen levels on a couple of nights went only to about 87%, one night went to 79% and another night went to 67%, so I took seriously the need for the CPAP machine. I did use the oximeter the first night I had the CPAP and even though I didn't sleep well my oxygen levels stayed in the 90s. The graph comparisons were amazing.

So to your question

...can anyone tell me if my problem is worth using the CPAP machine?

I think you should trust your instincts. The medical labels of Mild, Moderate and Severe refer only to frequency of apnea events. But in reality, the duration of events and how low your oxygen goes really matter in terms of the impact on your life and health. So too do the number of respiratory effort-related arousals that you have even when you don't have an apnea event or O2 dip.

If you do decide to give PAP a sustained try and want to monitor your sleep data to help you answer your questions about whether it's worth it, you for sure need to get rid of that brick machine and get one that will provide full treatment efficacy data. Sounds like you're on top of that already.

[HealthyandHopeful]

Well, I am still feeling tired but I hear it can take a while. I seem to be sleeping better though. I just sometimes tend to be one to run with something and this time want to be sure it is something I really need, especially since it is so life changing! I've been a bit skeptical of the sleep study place and don't want to make a decision on just their recommendation, although my doctor did say it could help since my oxygen went low. I don't know the meaning of all of these results and thought someone here might understand them better and help me feel good about the decision.

I did get a used CPAP machine but am taking it back next week and will probably exchange it. Their recommending a machine was not handled professionally and also raised doubts. I think it may be just this one lady though that I am dealing with. She offered to sell me a machine "under the table" ~ her words, since I was not going to use my insurance for the machine. (I was looking into a dental appliance and was going to save the insurance for that ~ I have decided to go ahead and use the insurance for the cpap machine and get a better machine than the one I paid for). She had a friend who has a DME business and had an over abundance of new CPAP machines. I could get a nice one for the same price I was going to pay for the used one from their company but would have to meet her somewhere and pay cash. I didn't take her up on the offer. The used machine I bought from them does not report data besides time used. The other thing that happened was ~ she told me it was a very lightly used machine. I got it home and saw it had been used over 200 days / over 1500 hours. I called and asked about that and she said they consider that lightly used. (Same lady who wanted to sell me a machine under the table).

Being my first time to deal with any of this, a lot of flags have been raised and so I was looking for some outside verification from those who won't benefit from a purchase I make. Hope this all makes sense! I appreciate any responses / recommendations. Thank you!

[kaiasgram]

Yikes! No wonder you're concerned about getting some feedback from parties with no conflict of interest or suspicious motives.

But you did get the oximeter and use it at home yourself, so you do have evidence that there's a real problem.

If you have specific questions about the numbers in your sleep study reports, ask away.

[Todzo]

Hi,

So glad to find a place to come ask questions! I never thought I had any kind of sleep apnea problem! I have felt tired during the day for years though. I was diagnosed with adrenal fatigue about 7 years ago and took a regimen of vitamins for that. I've taken cortisol at times. I get my bloodwork checked regularly for hormones and hypothyroid. A couple of months ago my doctor said that all of my bloodword looks find and there is no reason for me to feel tired during the day, let's do a sleep study just to cover all the bases. I agreed, although I thought it would be a waste of my insurance's money (I didn't have to even pay a co-pay). The first sleep study was ridiculous and because of the circumstances, I didn't sleep there. They said the study showed I had sleep apnea, but I wasn't convinced and finally they agreed to do the study over at a better facility.

My sleep study results (copied from report, and parts in bold were bold in report):

Description of Sleep: The total recording period was 431.0 minutes. The total sleep time was 368.5 minutes with sleep efficiency of 85.6%. Sleep onset latency was 22.5 minutes. Latency to persistent sleep (10 minutes of uninterrupted sleep) was 22.5 minutes. Arousals and awakenings occurred on an average of 23.8 per hour and her sleep architecture was fragmented.

Arousals do seem to be the parameter most associated with daytime sleepiness and quality of life.

She had 2.6% delta sleep. REM latency was 83.5 minutes and REM sleep was 18% of total sleep time. The total time awake after sleep onset was 39.5 minutes.
--1.8 Apneas per hour
--AHI total = 9.4 (Non-REM AHI of 1.8 ) - (REM AHI 44.2)
--In addition to the apneas and hypopneas, she had 4.4 respiratory-effort related arousals (RERAs) per hour
--RDI total = 13.8 -(Non-REM RDI of 7.0) - (REM RDI of 45.1)
She spent 10.2% or 37.5 minutes sleeping supine. The RERA events were worse when supine (RDI was 8.0 when supine). The obstructive events were worse during REM sleep (REM-AHI was 44.2). Lowest SaO2 was 79%. Her SaO2 was less than 90% for 16.6 minutes of sleep.

Diagnosis was Mild Obstructive Sleep Apnea Syndrome.

Good news, it looks like you caught this early!!!!

My note: I rarely sleep on my back. I don't know why I did at the study, except maybe to have part of the report show how I sleep on my back. The strange thing was that I had a really vivid series of dreams during that time on my back and even remember having a feeling like I couldn't move. Was strange.

I wonder what your tongue was doing during this time.

A couple of weeks later I had the study with the CPAP. Results are as follows:
Description of Sleep: The total recording period was 414.0 minutes. The total sleep time was 351.0 minutes with a sleep efficiency of 84.8%. Sleep onset latency was 15.5 minutes. Latency to persistent (10 minutes of uninterrupted sleep) was 18.0 minutes. Arousals and awakenings occurred on an average of 9.7 per hour and her sleep architecture was fragmented. She had 4.7% delta sleep. REM latency was 116.0 minutes and REM sleep was 16.1% of total sleep time. The total time awake after sleep onset was 47.5 minutes.

CPAP Titration:
--Mask used: medium ResMed nasal mask
--Supine sleep = 0.0%

You apparently know yourself well.

Nasal CPAP was initiated 5.0 cmH20 and titrated upwards. Various pressures were titrated and the highest pressure attempted was 7.0 cmH2O. She slept at this pressure for 161.0 minutes, 12.4% of that being in REM sleep. AHI at this pressure was 0.0.

From the charts:
CPAP at 5/0/0 I had 9 Hypopneas, and 0 of each Central Apneas, Obstructive Apneas, Mixed Apneas; so AHI was 2.8
CPAP at 7/0/0 I had 0 of any of these.


The part that really got my attention was the SaO2 level dropping to 79% even though very briefly.

Keep in mind where the oximeter sensor is. It is on your finger tip. Which means it is on the extremity of an extremity (I might even go another layer here). So if you have a stress reaction it will show the most in the extremities.

So is it possible that your body responds to apneia as stress. You bet it does!

Yes this is significant but it is not falling into the range that means serious damage has occurred (mine was 55%) and it means your body is active in protecting you.

I even bought an oximeter to use to record my oxygen levels at night because I was skeptical. My oxygen levels on a couple of nights went only to about 87%, one night went to 79% and another night went to 67%, so I took seriously the need for the CPAP machine. I did use the oximeter the first night I had the CPAP and even though I didn't sleep well my oxygen levels stayed in the 90s. The graph comparisons were amazing.

You do need treatment. You do need to take better care of yourself.

The story of getting the CPAP machine is long and I am about to trade for a different one. But from these results, can anyone tell me if my problem is worth using the CPAP machine?

OSA tends to get progressively worse. It steals your life bit by bit. It affects relationships and jobs greatly over time.

If a CPAP machine works for your it is well worth the effort.

I know my results are mild, but using the CPAP is a huge decision and change for me.
Thanks for reading this and for any help that can be given!!

Considering that many (ball park is near 50%) who try CPAP end up shelving it within a year I understand your reluctance.

Regardless of what you do with CPAP I strongly encourage you to pursue a thee year or so relationship with a dietitian and a personal trainer.

From: Tuomilehto H, Uusitupa M. Lifestyle changes aiming at weight loss should always be included in treatment of obese patients with obstructive sleep apnea. SLEEP 2014;37(5):1021

… our lifestyle intervention trial … in obese patients with mild OSA, showed that all common symptoms related OSA were effectively reduced, and even more importantly, two out of every three patients belonging to the lifestyle intervention group had AHI under 5; thus they were considered as cured … one year … 57% cured … and of those who were able to loose and sustain greater than or equal to 5% from their baseline body weight, altogether 70% were cured from OSA.

Even if you are not obese I believe that the dietitian and personal trainer is a good investment.

I and others have found moving vitamin D3 into its active range helpful. Those who are working with the D3 hormone (A.K.A. Vitamin D3) (e.g. Dr. Stasha Gominak, Michael F. Holick, Ph.D., M.D., Vitamin D Council) seem to be finding that the very low side of the “normal” range of 30-100 ng/L produces a range of symptoms including OSA, pain, and infection. All believe that a level lower than 50 ng/mL is not good and Dr. Stasha Gominak recommends 60-80 ng/mL for good health. It would probably be wise to check your vitamin D3 levels. See “The Vitamin D Council” for assay details.

[HealthyandHopeful]

Wow, I am so thankful for all of these responses! Actually all of the numbers in the reports ran together and I wasn't sure what numbers were most important. I focused on AHI and that didn't seem so bad. Hadn't really noticed the 23.8 arousals per hour, so I'm thankful that was pointed out. It went to 9.7 with the CPAP. The oxygen levels caught my attention but they only go that low for a brief (very brief) time, so I didn't know how relevant that was.

One thing I failed to mention is that I did lose weight 2 years ago and have kept the weight off. I lost almost 50 pounds and am at a healthy weight now. I am even a health coach (thus my username) helping others to do the same. That is another thing that made this so shocking to me, although it shouldn't have been because my husband has always been at a healthy weight and has sleep apnea himself. I have clients who are losing weight and looking forward to shedding their CPAP machines, so to find out I needed one myself, almost made me feel like a failure. I didn't eat healthy in the past but I do now and have for a while now.

You all don't know how much help this has been. Since I am returning the one machine (the brick) next week, I wanted to make absolutely sure I am making the right decision to come home with another machine. I do seem to be sleeping better and am getting used to the mask. I don't mind it as much as I thought I might and if it helps me to feel better I don't mind using it at all. It does mess up the hair though but not as bad as I expected. I am used to being able to get up and run a brush through my hair and go most of the time.

I have wondered if I should report the lady who wanted to sell me the machine "under the table" and who sold me the "lightly used" machine that had over 1500 hours on it. I just felt like I was taken advantage of because I went in knowing nothing. But I also don't want to make for bad relations if I am going to be continuing to do business with them. Doesn't seem good for the company, in my opinion. She even gave me a data card, knowing I wanted that, but also knowing it didn't record any data besides time used. She seemed nice, I just didn't get the help I had anticipated would come with the service. Once I decided to switch machines and go through my insurance I also started thinking that this is my prescription and I can probably use it wherever I want to use it. I just wouldn't know any other place to go! So I am here trying to gather all the knowledge I can before making theses decisions next week.

Thanks again so much!!

[violetpro]

Hi, HealthyandHopeful--Welcome to the forum. A call to your insurance company will give you the names of their network DMEs, any of whom you can use with a prescription. Do you have the prescription? It's your legal right.

Here's a link to a helpful blog created by one of this forum's members. The information may be a little outdated, but the basics are there, and you can then look for the more recent models. I personally recommend the Resmed S9 autoset, which is fully data-capable and can be used in both CPAP and APAP mode. There is also a heated humidifier for this model; and the climateline heated hose is helpful to avoid "rainout."

http://maskarrayed.wordpress.com/2011/0 ... -machines/

Once you've decided which machine you want, you can make calls to network DME's to see if they have it or will order it for you. A data-capable machine is covered by insurance using the same code # as a non-data-capable one, so don't let them tell you your insurance won't pay for the better quality machines.

[jweeks]

One thing I failed to mention is that I did lose weight 2 years ago and have kept the weight off. I lost almost 50 pounds and am at a healthy weight now. I am even a health coach (thus my username) helping others to do the same. That is another thing that made this so shocking to me, although it shouldn't have been because my husband has always been at a healthy weight and has sleep apnea himself. I have clients who are losing weight and looking forward to shedding their CPAP machines, so to find out I needed one myself, almost made me feel like a failure. I didn't eat healthy in the past but I do now and have for a while now.

Hi,

One thing that might make you feel less like you failed at something...weight isn't the cause of apnea. It is a structural issue with your airway. Often, apnea sets up the conditions where weight gain is almost unavoidable. Weight can make it worse, but rarely is it the cause. In my case, when I was losing weight, my apnea got worse. While it is a nice dream to get off of the CPAP machine by losing weight, the weight loss should be for other reasons. If it happens to help, then great, but I don't want to see people's hopes shattered when they invest so much time and effort into losing weight only to find that they still need the machine.

-john-

[HealthyandHopeful]

Hi, HealthyandHopeful--Welcome to the forum. A call to your insurance company will give you the names of their network DMEs, any of whom you can use with a prescription. Do you have the prescription? It's your legal right.

Here's a link to a helpful blog created by one of this forum's members. The information may be a little outdated, but the basics are there, and you can then look for the more recent models. I personally recommend the Resmed S9 autoset, which is fully data-capable and can be used in both CPAP and APAP mode. There is also a heated humidifier for this model; and the climateline heated hose is helpful to avoid "rainout."

http://maskarrayed.wordpress.com/2011/0 ... -machines/

Once you've decided which machine you want, you can make calls to network DME's to see if they have it or will order it for you. A data-capable machine is covered by insurance using the same code # as a non-data-capable one, so don't let them tell you your insurance won't pay for the better quality machines.

Thanks for this helpful information! I am going to look over this and hopefully be able to make a good decision on a machine. I will definitely call my insurance and find out what DMEs are in network.

[sc0ttt]

Thanks for this helpful information! I am going to look over this and hopefully be able to make a good decision on a machine. I will definitely call my insurance and find out what DMEs are in network.

The way to approach this with your doctor is that you want to be totally committed to using your machine regularly, so that's why you want the heated hose and humidifier and exhale relief functions. And you want to take control of your therapy so that's why you need a machine with full data capabilities. Then you could ask about whether your issues require auto adjust or not, and other questions to show that you're an informed patient.

If you go in there and say "I want the Brand X Model Y with Features Z" doctor might get suspicious. Apparently a lot of people get their insurance to buy them expensive machines and then they sell them on eBay.

[HealthyandHopeful]

Thanks for this helpful information! I am going to look over this and hopefully be able to make a good decision on a machine. I will definitely call my insurance and find out what DMEs are in network.

The way to approach this with your doctor is that you want to be totally committed to using your machine regularly, so that's why you want the heated hose and humidifier and exhale relief functions. And you want to take control of your therapy so that's why you need a machine with full data capabilities. Then you could ask about whether your issues require auto adjust or not, and other questions to show that you're an informed patient.

If you go in there and say "I want the Brand X Model Y with Features Z" doctor might get suspicious. Apparently a lot of people get their insurance to buy them expensive machines and then they sell them on eBay.

So the prescription has to spell all of these things out?

[BlackSpinner]

So the prescription has to spell all of these things out?

The prescription should say something like "CPAP 7- 12 cm H2O with efficacy data, humidifier with heated hose, mask of patient's choice"

the rang indicates an auto, efficacy data = the ahi, leak data and such not just hours of use. Mask of patients choice is important in that you are not locked into one mask.

[zoocrewphoto]

Thanks for this helpful information! I am going to look over this and hopefully be able to make a good decision on a machine. I will definitely call my insurance and find out what DMEs are in network.

The way to approach this with your doctor is that you want to be totally committed to using your machine regularly, so that's why you want the heated hose and humidifier and exhale relief functions. And you want to take control of your therapy so that's why you need a machine with full data capabilities. Then you could ask about whether your issues require auto adjust or not, and other questions to show that you're an informed patient.

If you go in there and say "I want the Brand X Model Y with Features Z" doctor might get suspicious. Apparently a lot of people get their insurance to buy them expensive machines and then they sell them on eBay.

So the prescription has to spell all of these things out?

My prescription stated Resmed S9 autoset 11-17. My doctor chose the machine specifically and prescribes autosets to all patients so that he can review the full data and make adjustments. Most doctors are not specific.

That said, I would take a list of machines with features (data, etc) and tell the doctor that you would prefer the option of auto since your needs can change over time, and you really want the data so that any problems can be dealt with.

Yes, there are people who sell their extra stuff on ebay, but in order to legally own (And thus sell) the machine, you have to make it past compliance. Sell it without making compliance, and the person will be paying the full retail price as insurance won't pay and it can't be returned. And how many people are going to get a machine and make compliance, just to sell it, especially when the machines can't be sold on ebay, just parts. If your doctor won''t specify the machine for you, go to a different doctor. I suspect doctors who aren't willing to prescribe a full data machine are really worried about the patient knowing too much, not that the patient will sell the machine.