Help - newbie asks some questions

Hi All,

I am new to CPAP world. I'm glad to find this forum.
I searched the forum to get answers to some questions, but there are still things that aren't clear yet.

A little about me:
I am 37 year old, 5'7", 161 lbs.
Recently I experienced sleepiness during the day, thus my doctor told me to take sleep study.
AHI is 50 (measured by sleep monitor device, pulse-oximeter) - severe OSA, so they prescribed CPAP machine.
On 7-day CPAP trial, my AHI dropped to 7 (measured by the CPAP machine).

I am pretty healthy, blood pressure is normal, no diabetes, cholesterol is normal.
My exercise is walking 2 - 3 times a week for 30 minutes. I sit most of the time at work.

1. Is it possible that they misdiagnosed me, considering on the night when I wore the sleep monitor device, I could barely sleep (it wasn't comfortable, and I was scared to accidentally press the button on the device)? I felt some improvement during 7-day CPAP trial period, but not that significant though.

2. Is there other problem that could cause OSA misdiagnose?
Before going to bed, somehow my nasal passage feels much narrower (feels heavy to breath, even when I sit/stand). I try allergy medicine (nasal spray) that my doctor prescribed. Next I will try humidifier.

3. Considering that I'm still working with my doctor to figure out my narrowed nasal passage during the night, I would like to know how's my oxygen level when I try those things (allergy medicine, humidifier, etc.). Is there any affordable way to monitor and record oxygen measurement throughout the night? Is there any portable device that can be connected to smartphone perhaps?

4. Will CPAP machine be able to tell you when you don't have OSA anymore?
I mean...it automatically adjust the pressure...would it be able to tell when we don't need the pressure anymore?

5. I plan to get life insurance in several months, how bad my OSA diagnose will affect the premium?
I read in a thread that a life insurance provider asked for a proof of CPAP usage (using SleepyHead software). If we can provide that proof, will the premium go down to normal?

Thank you so much before

Congratulations on getting a diagnosis and treatment before an avalanche of medical issues drove you to the doctor. I'll weigh in a bit while others sleep.

1. It may be that your home study is not exactly accurate if you were awake most of the night. I was under the impression the home studies don't differentiate between wake and sleep. Maybe someone else can jump in here. I doubt the diagnosis is wrong with a number that high, but your AHI might not be exactly spot on. However, your treated AHI is still diagnostic for OSA, so I would think if you were not treated your AHI is much higher. About that first week - it takes time to adjust to all the new sensations, make peace with the mask, hone in on an effective pressure, and go through any recovery from the sleep deprivation when you were untreated. And with an AHI of 7, that's still not good numbers. I wouldn't expect to notice much difference at this point. The fact that you felt any improvement is an encouraging sign of the treatment's potential for you.

2. Is there a humidifier on your machine? Some users do better with warm moist air, others want it cool. I prefer cool myself. If it gets warm at all I get congested. Only by trial and error can you find out what machine humidity level works best for you. You may find that breathing filtered air helps with allergy symptoms at night. I can breathe fine all night but as soon as I take the mask off in the morning, the allergy symptoms start. Also, I don't know about your mask style or fit, but some masks can sit at a point on the sides of the nose over the sinuses and the pressure of a tight mask can block the sinuses. If that's your issue, a mask change could help.

3.There are recording oximeters that will record the oxygen overnight. If you resolve your congestion and get your AHI down, you may not still feel you need one. But they are out there. Someone will weigh in on this.

4. If you use an auto adjusting machine, if you see the pressure never increases and your AHI is nearly nonexistent, you might want to get retested. Because the machine always puts out SOME air, it can't tell you how you would do with no assistance, but it can give you indicators.

GoodnightRest,

As one who is seriously considering having a septoplasty/turbinate reduction, it could very well be that your narrow nasal passages are contributing to the problem even though they usually aren't the case of sleep apnea. I would definitely encourage you to work with your doctor on nasal optimization because that could be a reason why you haven't felt any improvement after 7 days although to be honest, that is way too soon generally, to make an assessment one way or another.

Also, I wanted to share my experience with testing since I had a home study three years ago and then a full scale one in November of last year. The home study pointed to severe apnea but when I had the full scale study, my apnea was very mild. However, the RDI was 23 which took into account that the other sleep breathing events were RERAS. So to answer your question about misdiagnosis, home studies aren't always completely accurate regarding the type and severity of sleep breathing disorders. However, I have not known them to indicate a problem when someone didn't have one although I am not 100% sure on that.

What led your doctor to order a sleep study and why did you go the home study route?

No, the machine can't tell you if you know longer have apnea. Many people will run it at the lowest pressure just to see what the AHI is because if it is microscopically low, that could be an indication it is not needed. But only a sleep study without the machine can give you that information.

GoodNightRest wrote:Hi All,

I am new to CPAP world. I'm glad to find this forum.
I searched the forum to get answers to some questions, but there are still things that aren't clear yet.

A little about me:
I am 37 year old, 5'7", 161 lbs.
Recently I experienced sleepiness during the day, thus my doctor told me to take sleep study.
AHI is 50 (measured by sleep monitor device, pulse-oximeter) - severe OSA, so they prescribed CPAP machine.
On 7-day CPAP trial, my AHI dropped to 7 (measured by the CPAP machine).

I am pretty healthy, blood pressure is normal, no diabetes, cholesterol is normal.
My exercise is walking 2 - 3 times a week for 30 minutes. I sit most of the time at work.

1. Is it possible that they misdiagnosed me, considering on the night when I wore the sleep monitor device, I could barely sleep (it wasn't comfortable, and I was scared to accidentally press the button on the device)? I felt some improvement during 7-day CPAP trial period, but not that significant though.

2. Is there other problem that could cause OSA misdiagnose?
Before going to bed, somehow my nasal passage feels much narrower (feels heavy to breath, even when I sit/stand). I try allergy medicine (nasal spray) that my doctor prescribed. Next I will try humidifier.

3. Considering that I'm still working with my doctor to figure out my narrowed nasal passage during the night, I would like to know how's my oxygen level when I try those things (allergy medicine, humidifier, etc.). Is there any affordable way to monitor and record oxygen measurement throughout the night? Is there any portable device that can be connected to smartphone perhaps?

4. Will CPAP machine be able to tell you when you don't have OSA anymore?
I mean...it automatically adjust the pressure...would it be able to tell when we don't need the pressure anymore?

5. I plan to get life insurance in several months, how bad my OSA diagnose will affect the premium?
I read in a thread that a life insurance provider asked for a proof of CPAP usage (using SleepyHead software). If we can provide that proof, will the premium go down to normal?

Thank you so much before

Sleep apnea is a condition, like diabetes or arthritis, that you more or less have for life unless something radical (like losing 100 lbs) changes... it's not something you treat and 'recover' from, not something you generally get to quit treating after a certain time, so while technology is changing quickly in terms of (hopefully) minimally obvious or invasive treatment, you're probably stuck with either Cpap or whatever new tech comes up with, for life. Many people have been talked into surgery to 'cure' it, but unfortunately realized that it just comes back... I'm not talking about nasal turbinate reduction though - that certainly helps with breathing, though does NOT cure OSA because that's a matter of your throat closing, not nasal blockage.

Another thing - sleep labs almost never completely (or even sometimes) misdiagnose OSA... it's all done with machines rather than individual 'opinions' and is usually quite accurate, even if slightly diff. equipment (lab vs lab/day vs day) shows minor discrepancies which don't change the diagnosis or ultimate treatment (Cpap) called for.


You'll have to ask your insurance co. about their own policies - each co. is different.

Julie wrote:Sleep apnea is a condition, like diabetes or arthritis, that you more or less have for life unless something radical (like losing 100 lbs) changes... it's not something you treat and 'recover' from, not something you generally get to quit treating after a certain time, so while technology is changing quickly in terms of (hopefully) minimally obvious or invasive treatment, you're probably stuck with either Cpap or whatever new tech comes up with, for life. Many people have been talked into surgery to 'cure' it, but unfortunately realized that it just comes back... I'm not talking about nasal turbinate reduction though - that certainly helps with breathing, though does NOT cure OSA because that's a matter of your throat closing, not nasal blockage.

Another thing - sleep labs almost never completely (or even sometimes) misdiagnose OSA... it's all done with machines rather than individual 'opinions' and is usually quite accurate, even if slightly diff. equipment (lab vs lab/day vs day) shows minor discrepancies which don't change the diagnosis or ultimate treatment (Cpap) called for.


You'll have to ask your insurance co. about their own policies - each co. is different.

Julie, as one who feels there was a significant difference between my home study and full scale studies, I beg to differ that it was minor. In my case, it wouldn't have made a difference in my pursuing different treatments for various reasons but for other people, it might be the case.

And since many people have trouble with pap therapy in spite of their best efforts (contrary to the popular belief of this board), it is important that the study be as accurate as possible so they can make a fully informed decision as to what alternatives might be the best. Hopefully Goodnightrest will start benefiting from pap therapy and won't be in this position. But if he feels after a reasonable amount of time that he/she needs to look elsewhere, this is why having accurate information is important.

49er

I didn't mean the diff. between lab and in-home was minor, I said discrepancies between labs could be minor.

Julie wrote:I didn't mean the diff. between lab and in-home was minor, I said discrepancies between labs could be minor.

Sorry, my apologies for misunderstanding.

kteague wrote:Congratulations on getting a diagnosis and treatment before an avalanche of medical issues drove you to the doctor. I'll weigh in a bit while others sleep.

1. It may be that your home study is not exactly accurate if you were awake most of the night. I was under the impression the home studies don't differentiate between wake and sleep. Maybe someone else can jump in here. I doubt the diagnosis is wrong with a number that high, but your AHI might not be exactly spot on. However, your treated AHI is still diagnostic for OSA, so I would think if you were not treated your AHI is much higher. About that first week - it takes time to adjust to all the new sensations, make peace with the mask, hone in on an effective pressure, and go through any recovery from the sleep deprivation when you were untreated. And with an AHI of 7, that's still not good numbers. I wouldn't expect to notice much difference at this point. The fact that you felt any improvement is an encouraging sign of the treatment's potential for you.

2. Is there a humidifier on your machine? Some users do better with warm moist air, others want it cool. I prefer cool myself. If it gets warm at all I get congested. Only by trial and error can you find out what machine humidity level works best for you. You may find that breathing filtered air helps with allergy symptoms at night. I can breathe fine all night but as soon as I take the mask off in the morning, the allergy symptoms start. Also, I don't know about your mask style or fit, but some masks can sit at a point on the sides of the nose over the sinuses and the pressure of a tight mask can block the sinuses. If that's your issue, a mask change could help.

3.There are recording oximeters that will record the oxygen overnight. If you resolve your congestion and get your AHI down, you may not still feel you need one. But they are out there. Someone will weigh in on this.

4. If you use an auto adjusting machine, if you see the pressure never increases and your AHI is nearly nonexistent, you might want to get retested. Because the machine always puts out SOME air, it can't tell you how you would do with no assistance, but it can give you indicators.

Thank you so much for your concise answer

Let me response to your answer by putting the number below:

#1. After using my own machine for 5 days, I don't really feel much different. Still some sleepiness during the day. I noticed that when I sleep with 30 degree elevation, my snores decreased a lot (I recorded it).
Aside from that, I am afraid my condition cased by other factor, such as enlarged turbinates or nasal collapse as I have difficulty breathing even during the day (mostly at night before bed). My doctor thought it could be allergy, thus she prescribed nasal spray medication. If after a month there is no improvement, she will refer me to ENT doctor.

#2. Yes, there is humidifier on my machine, but I haven't used it yet. I will give it a try.

#3. Anybody know about affordable continuous pulse oximeter device (preferably with interface to smartphone as it might be cheaper)?

#4. Yes, I have auto adjusting machine. I saw that my AHI dropped to 3 and 4. But I couldn't find the last pressure or peak pressure on the display. Any idea how can I get that info from? My machine came with SD card, but it seems that the card is empty and not recording anything. The manual doesn't help either. I use Philips SystemOne A-Flex.

Thanks!

49er wrote:GoodnightRest,

As one who is seriously considering having a septoplasty/turbinate reduction, it could very well be that your narrow nasal passages are contributing to the problem even though they usually aren't the case of sleep apnea. I would definitely encourage you to work with your doctor on nasal optimization because that could be a reason why you haven't felt any improvement after 7 days although to be honest, that is way too soon generally, to make an assessment one way or another.

Also, I wanted to share my experience with testing since I had a home study three years ago and then a full scale one in November of last year. The home study pointed to severe apnea but when I had the full scale study, my apnea was very mild. However, the RDI was 23 which took into account that the other sleep breathing events were RERAS. So to answer your question about misdiagnosis, home studies aren't always completely accurate regarding the type and severity of sleep breathing disorders. However, I have not known them to indicate a problem when someone didn't have one although I am not 100% sure on that.

What led your doctor to order a sleep study and why did you go the home study route?

No, the machine can't tell you if you know longer have apnea. Many people will run it at the lowest pressure just to see what the AHI is because if it is microscopically low, that could be an indication it is not needed. But only a sleep study without the machine can give you that information.

Thank you so much 49er.

Yes, currently my doctor prescribed nasal spray assuming that my nasal congestion is caused by allergy. She said after a month, if there is still no improvement, she will refer me to ENT. Even though the nasal spray prescription doesn't seem to have any effect, but seems like saline nasal spray work a bit. I can breath better a bit (but only for a couple hours). I agree, I am afraid I have enlarged turbinates issue.

Yes, that's my worry, they diagnosed me with severe OSA, but I really think mine could be mild. This is because when I sleep with 30 degree elevation my snoring is almost completely gone. And the machine doesn't really give any significant improvement.

Actually I asked my doctor if I can have sleep test because I felt sleepiness during the day. And she referred me to Sleep Lab (I'm with Kaiser by the way).
So, how did you get full scale study? My doctor seems hesitant to send me for full scale study.

The lowest pressure I can set for my machine is 4. Is it low enough as a start? It will gradually increase the pressure.

Thanks!

Julie wrote:Sleep apnea is a condition, like diabetes or arthritis, that you more or less have for life unless something radical (like losing 100 lbs) changes... it's not something you treat and 'recover' from, not something you generally get to quit treating after a certain time, so while technology is changing quickly in terms of (hopefully) minimally obvious or invasive treatment, you're probably stuck with either Cpap or whatever new tech comes up with, for life. Many people have been talked into surgery to 'cure' it, but unfortunately realized that it just comes back... I'm not talking about nasal turbinate reduction though - that certainly helps with breathing, though does NOT cure OSA because that's a matter of your throat closing, not nasal blockage.

Another thing - sleep labs almost never completely (or even sometimes) misdiagnose OSA... it's all done with machines rather than individual 'opinions' and is usually quite accurate, even if slightly diff. equipment (lab vs lab/day vs day) shows minor discrepancies which don't change the diagnosis or ultimate treatment (Cpap) called for.


You'll have to ask your insurance co. about their own policies - each co. is different.

Thanks Julie for sharing your knowledge.

I am in my ideal weight by the way. If I lost 100 lbs, I would only weigh 61 lbs

The reason I am thinking that my sleep apnea could be "cured" is because it might be caused by other factor that is curable, like: nasal polyps, enlarged turbinates, nasal collapse, tonsillitis, adenoiditis, allergy, etc.
Yes, I'm thinking (wishful thinking) that my apnea is caused by nasal issue, and not throat closing.

The interesting is, they said that nothing could address my severe OSA other than CPAP. But when I sleep at 30 degree elevation, and I recorded any sound during the sleep, I barely snore, and no sound of waking up gasping for air (typical sound produced when having apnea period). That's why I'm confused. Like what 49er experienced, perhaps my apnea is mild, but they misdiagnosed me as severe. And I hope further, if it's mild, then I wouldn't need CPAP, and could address the condition by using nasal dilator (I ordered Max-Air Nose Cones based on this study: http://www.ncbi.nlm.nih.gov/pubmed/21819762).

That's why I was wondering if there is affordable continuous pulse oximeter device, so that I can play around by using nasal spray, sleep at 30 degree elevation, and using nasal dilator, and see if any of those address/"cure" my apnea.

Thanks!

GoodNightRest wrote: #2. Yes, there is humidifier on my machine, but I haven't used it yet. I will give it a try.

Do give the humidifier a try. Many cpap users find that added humidity actually helps clear up the nose...some need a lot and some need only a little but it might help.

GoodNightRest wrote:#3. Anybody know about affordable continuous pulse oximeter device (preferably with interface to smartphone as it might be cheaper)?

I don't know of any that will work with a phone but there are affordable overnight recording pulse oximeters varying in price.
http://www.coopermedical.com/overnight-pulse-ox
Take a look at the above link and the models offered. Then shop the web for best price. EBay is one source.

Pugsy wrote:
Do give the humidifier a try. Many cpap users find that added humidity actually helps clear up the nose...some need a lot and some need only a little but it might help.

Thanks Pugsy, I will try it tonight.

Btw, when I use the machine, I don't feel that my nose is congested. Do you have some idea what might cause the congestion?

Pugsy wrote: I don't know of any that will work with a phone but there are affordable overnight recording pulse oximeters varying in price.
http://www.coopermedical.com/overnight-pulse-ox
Take a look at the above link and the models offered. Then shop the web for best price. EBay is one source.

Awesome!! That's what I have been looking for!
I am interested in CMS 50F, but the review in Amazon is not that good for the older model. The newer model doesn't seem to work with SleepyHead (based on product description in Amazon). Is the software that come with newer CMS 50F sufficient and could replace SleepyHead?

Thanks!

GoodNightRest wrote:
#4. Yes, I have auto adjusting machine. I saw that my AHI dropped to 3 and 4. But I couldn't find the last pressure or peak pressure on the display. Any idea how can I get that info from? My machine came with SD card, but it seems that the card is empty and not recording anything. The manual doesn't help either. I use Philips SystemOne A-Flex.

I believe the machine you have listed should have detailed data. Do you mean you have Sleepyhead downloaded and are unable to see data? If so be sure the lock on the side of your SD card is in the record position (toward the insertion end).
If you do not have Sleepyhead checkout this link. https://sleep.tnet.com/resources/sleepyhead

By monitoring and posting screen shots others may be able to help you tweak your settings for better results. Here is a site that helps with that. https://sleep.tnet.com/reference/tips/imgur

Check with Palerider if he doesn't stop by here as to the compatibility of the CMS 50 F oximeter with Sleepyhead.
I think it was the older "F" that had the problem and I think that issue has been resolved but I can't swear to it. I am not quite up to snuff on each exact model. He can tell you for sure though.

GoodNightRest wrote:Do you have some idea what might cause the congestion?

Congestion with or without CPAP use? Without CPAP use it could very well be any number of the usual causes for nasal congestion.
With CPAP use it could simply be the drying out of the nasal mucosa. Nasal mucosa are funny little dudes...when they get irritated for any reason they swell up (or start draining) and that's what causes the congestion. Now the irritation can come from the immune system and that's when we get the typical allergy symptoms...runny nose, congestion, sneezing....all because the nasal mucosa got irritated. It also can happen when the nasal mucosa get too dry...it can also happen when the nasal mucosa get too much moisture.
Funny little dudes....they can get irritated by any number of things but what they do is the same thing no matter what makes them mad....they swell up or start running.

Google "CPAP rhinits" and start reading and you will see what I mean.

Now some people find that their nasal mucosa don't need extra moisture and they can use a cpap machine without added humidity or at a very low humidity level. There is no right or wrong when it comes to humidity choices because each person's nasal mucosa can be entirely different from the next person...heck even in the same household there can be marked differences in what makes a person's nasal mucosa happy. This is something that you will have to figure out through trial and error.

Since everyone is different what I usually tell people when they are complaining of nasal issues with cpap use...
if you aren't using a humidifier...use one
if you are using a humidifier at a low setting...try higher setting
if you are using a humidifier at an already higher setting...try lower setting
if you are using a humidifier at a middle of the road setting...toss a coin but if you find a hot shower helps your nose...go higher

My nose needs lots of moisture to be happy. It's always been that way and I joke and tell people if I could snort water it would be real happy. Others don't need so much....there is no right or wrong..there is only what works best for the individual.

Some people say that using a humidifier is entirely a "comfort" feature but I don't necessarily hold to that belief because there can be medical needs behind that "comfort" thing. There's a reason that humidifiers are now commonly dispensed with these machines..it's because research showed that most patients did better with humidifiers than without. Now there are always going to be those people who do well without added moisture but the majority of people will need at least a little added moisture.

From ResMed....
What are the overall benefits of humidification?
Up to 40% of PAP users experience nasal congestion and dryness of the nose and throat. These symptoms can be severe enough to prevent patients from continuing their treatment. The humidifier adds moisture and warmth to the air delivered by a CPAP or bilevel system. This reduces symptoms of dryness and congestion, improving patient comfort and compliance. Research also shows that nasal resistance can promote mouth breathing, which in turn leads to additional dryness. Heated humidification can prevent the large increase in nasal resistance that results in mouth breathing and leaks.