Need some guidance please (newbie)

Hi all,
This is my first post, although I have been lurking for some time (and getting lots of good info!). I will describe my situation in a little more detail below but my main questions are:

• Is it always the standard protocol to be directed to use a CPAP as the first line of treatment or is it possible to go directly to alternative therapies?
  For those who have completed at-home sleep tests with about 3hrs or less of sleep, how accurate were your results (over/understated)? Somewhere I read you needed 6 hrs?

Here is the rather whiny background.
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A bit about me: Male, age 40, BMI 30, no meds.
Several years ago I was told by an anesthesiologist that I had sleep apnea. Apparently I stopped breathing during a medical procedure while under sedation and caused quite a scene in the OR. I subsequently lost quite a bit of weight and didn't have any serious symptoms I was concerned with so I neglected to follow up with anyone on the apnea claim.
This year, I decided to bring this up to my primary care physician since, although still pretty mild, I did notice some of the standard symptoms (daytime sleepiness, groggy feeling, loud snoring, waking up...). I was referred to a pulmonologist and they ordered a take-home sleep study.
Now...
At that first appointment, I explained to the nurse practitioner that 1) I was told as a kid that I have a deviated septum and didn't know if it was worth screening for that as a possible root cause of my snoring and 2) I am severely claustrophobic (as in, I don't even wear hats, necklaces, or scarves due to the paranoia surrounding objects on or about my face that may be constrictive). I thought perhaps that bringing this up might move the conversation towards alternative therapies. She presented me with a full face mask and I instantly felt a jolt of adrenaline and serious anxiety. I explained my serious doubts about being able to proceed with that treatment option but was told I basically had to "fail" the CPAP before other treatment options would be considered.
So I went ahead and "completed" the at-home sleep test I was given. I purposely put "completed" in quotes because I truthfully got about 2.5-3 hours of fitful sleep that night. The nasal cannula/oxygen tube thing they gave me to wear elicited more anxiety than I have experienced in a long time. I panicked and ripped it off numerous times and finally gave up and watched a documentary until I was so exhausted I put the nasal tubes back on (just barely at the edge of my nostrils) and nodded off. Total nightmare. I wrote this all up in the post-test questionnaire and dropped the test off.
The next call I got from the sleep lab said I needed to come in to be fitted for an APAP. I had never even heard of that before. I guess I would have expected that someone would have called me to explain my lab results first before saying "come on in and get fitted for a mask." After a few rounds of phone tag I finally got someone to explain the results: mild sleep apnea (7.3 events). I was very surprised that they even got enough data based on the couple of hours I dozed on the couch before I got up and went to work.
I went ahead and scheduled the appointment to be fitted for the CPAP. It was a group appointment. Before the appointment began they were asking me for a credit card to put on file for automatic monthly billing (it was a rent to own). Well, something about that request (I had told them prior to the appointment I would not supply a credit card), and the ominous device sitting on the table between us just put me right off. I walked out of the appointment and never got a device. Canceled follow up appointments when I got home.
End pity party.
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So after all this, I'm feeling rather embarrassed, disappointed, frustrated, not not quite sure how to proceed. Or even if I should proceed. The one valuable thing I did get from the CPAP fitting was a printout of my actual test results, which claimed 7hrs and 22mins of data. I wasn't even wearing the nasal cannula until the last 2 or 3 hrs. How are these results even valid? The doctor's note says "mild obstructive sleep apnea" and "CPAP/APAP could be tried." Saying "could" makes me think it's optional?
Any feedback or words of encouragement are much appreciated. This whole experience has been a major bummer so far.

Welcome to the forum.

You might want to read this as it may help you understand some of the items that are reported in the sleep study reports.
http://adventures-in-hosehead-land.blog ... -test.html

Do you normally sleep on your back? That alone could easily be responsible for a lot more than a reading of 7.3 as backsleeping promotes apnea, but side sleeping does not. Depending on your answer, you might want to make an effort to stay off your back - there are various ways to do it - and see if you still feel sleepy, etc. during the day.

Hello and welcome to the forum Pharaoh90,

I am sorry you are bummed.

The others will correct me here if I am wrong. That's the nice thing about this forum. Let's see. You said,

1. "Several years ago ... I stopped breathing during a medical procedure while under sedation and caused quite a scene in the OR. I subsequently lost quite a bit of weight and didn't have any serious symptoms I was concerned with so I neglected to follow up with anyone on the apnea claim." A;though losing weight can help, apnea isn't totally related to weight.

and

2. "This year, I decided to bring this up to my primary care physician since, although still pretty mild, I did notice some of the standard symptoms (daytime sleepiness, groggy feeling, loud snoring, waking up...)."

If I was experiencing those symptoms, I would treat the apnea, too. So good job! By all means, DO PROCEED! Falling asleep at the wheel is not advised. (Yes, there are those of us who have done it.) Feeling sub-par is no fun either.

My test was at a Sleep Clinic and I don't know if the oxygen tube thingy has any affect on your AHI score. I didn't use one.

APAP, CPAP, BiPAP are all machines that essentially do the same thing for you; they keep your airway open with positive pressure when you are sleeping. If it closes, your body struggles to awaken itself to breathe. Your AHI of 7.3 means your body is doing this 7.3 times per hour. You are right. This is mild sleep apnea. By contrast, my AHI before treatment was 71. Severe sleep apnea. But with a machine, my average AHI is routinely below a 1(considered normal breathing). The machines work great if you have them set correctly.

The machine's method of doing it (self adjusting pressure; straight fixed pressure; two fixed pressures, one for breathing in and one for out, etc.) is the main difference. In my case, my insurance wouldn't pay for a Bi-PAP machine until I tried, and failed at a CPAP or fixed pressure machine. The fact that your doctor has prescribed an APAP is a good thing. It is a machine that can automatically change pressures based upon your needs throughout the night. If your insurance is paying for it without freaking out, that is also a good thing.

Julie wrote: ↑

Tue Sep 04, 2018 8:52 pm

Do you normally sleep on your back? That alone could easily be responsible for a lot more than a reading of 7.3 as backsleeping promotes apnea, but side sleeping does not. Depending on your answer, you might want to make an effort to stay off your back - there are various ways to do it - and see if you still feel sleepy, etc. during the day.

Hi - thanks for your response.
I definitely have noticed that sleeping on my back dramatically increases snoring. Nights that I stay mostly on my side/stomach I actually wake up feeling like I have slept. I tend to be a very restless sleeper - rolling, flailing, jogging, talking... quite a show
Any tips for keeping in a better position? Other than a straightjacket and leather straps?
I have tried propping up with pillows and a foam wedge but end up finding my way back to flatness no matter what.

Julie wrote: ↑

Tue Sep 04, 2018 8:52 pm

Do you normally sleep on your back? That alone could easily be responsible for a lot more than a reading of 7.3 as backsleeping promotes apnea, but side sleeping does not. Depending on your answer, you might want to make an effort to stay off your back - there are various ways to do it - and see if you still feel sleepy, etc. during the day.

Hi - thanks for your response.
I definitely have noticed that sleeping on my back dramatically increases snoring. Nights that I stay mostly on my side/stomach I actually wake up feeling like I have slept. I tend to be a very restless sleeper - rolling, flailing, jogging, talking... quite a show
Any tips for keeping in a better position? Other than a straightjacket and leather straps?
I have tried propping up with pillows and a foam wedge but end up finding my way back to flatness no matter what.

Thanks for the helpful replies!
Pugsy - I will read up at the link you sent. Very disappointed that nobody at the sleep center provided me with the results or explained it to me. I turned in the testing equipment and the next call I got was to schedule a fitting. I didn't see the actual results until the fitting appointment (which I left empty-handed).
MrsRinPDX - I do have a deductible so my out-of-pocket expense is pretty significant. The mask alone was over $600, then $89 a month for 10 months for a rental fee. We have a health reimbursement account that brought the mask down to $140, which I was prepared to pay in cash at the appointment, but I didn't want to provide a credit card for the 10 month rental. That was for a few reasons but mainly I wanted to go month-to-month to see how it went since I had serious misgivings about the whole thing. They refused to proceed without a credit card so I left.
It really just felt like they weren't receptive to my concerns about cpap compliance or willing to help alleviate those fears. It was basically "well this is the treatment so you have to deal with it". The tiny little oxygen tubes sent me into full-on panic mode. They wanted me to tape the tubes to my face but I couldn't bring myself to do that. A couple times in the past when I was administered gas as a sedative for surgeries, they had to hold my hands down before I went under and immediately after awakening because I instinctively started tearing the mask away. It's more than just "oh it's uncomfortable but I'm willing to try" for me - it a major anxiety trigger to have things on my face. Plus with all of the rolling around when I sleep, wouldn't I end up breaking the machine/hoses? Is it really the case that you have no choice but to go through cpap before exploring other options? That's the impression I got from the pulmonologist's office.

Staying off ones back is easier said than done as you have found out.

I will share what I did when I did a month long experiment to try to stay off my back to see if it changed my pressure needs.

I didn't want to use anything that would cause discomfort because I always thought it was stupid to try something that caused pain which would cause a person to wake up to change positions...like the old tennis ball trick. Just what I want to do to my already fragile sleep...cause myself more back pain and more wake ups.

Anyway I tried various things like foam wedges, stacks of pillows, stacks of linens, etc slid up against my back to keep me on my side. While they would work briefly at the beginning of the night I found that invariably they would slide out from under me and either end up on the floor or across the bed.
I decided I needed something with more weight to it so it wouldn't slide out so easily when I leaned against it.
And I wanted it to be comfortable....
So I ended up using a buckwheat hull pillow propped up against my back. I happened to have one handy because I use one under my head anyway because of a bad cervical spine.

The buckwheat hull pillow is going to be heavy and you can get various sizes with some where you can add or remove the hulls.
For just side sleeping wall...pack it full and firm.
When I rolled back against it...it wouldn't move and it actually felt good against my back.

I use this one...
https://www.amazon.com/FaceFit-Pillow-C ... fit+pillow

It ships over stuffed which probably would work well as a wall against your back. I ended up taking out about half to make it work for my neck.

Now you can buy larger sizes....even up to a king size on some websites but unless you sleep alone..that king size is going to hog the bed but it won't move....it weighs a ton.
Unless you are a really tall & large person....the size I use would probably be sufficient to keep you off your back and not move around.
I found that at most I might end up at a 45 degree angle if I actually tried to really end up on my back and a half way side position is still better than flat on your back.

So that's what I used for a month during my experiment to stay off my back. It ended up in the floor only a couple of times. I probably shoved it off in my sleep and don't remember it. I like sleeping on my left side and that meant the pillow was on the edge of the bed because of the side of the bed I sleep on.
As it turned out I saw no real change in pressures used when I stayed on my side because for me my OSA is worse in REM sleep no matter what position I sleep in and I figured I might as well sleep in any position I wanted to and just let the auto adjusting pressures of the machine sort it out. I was going to need sometimes 16 to 18 cm even on my side during REM anyway.

I still will sometimes use a buckwheat hull pillow against my back though...just for comfort because I have a bad back and side sleeping is more comfortable for me. When I end up flat on my back I wake up from increased pain so for that reason I will sometimes still use the buckwheat hull pillow because I have found that when I lean against it that it actually feels good in terms of support for my old arthritic back.

As always...YMMV but that's how I handled the side sleeping only experiment.

Thanks for the info about the pillows, Pugsy. I had never heard of those before. I think I'd like to explore the positioning aspect a little more since I know that sleeping on my back brings on the snoring.
After digging into my results a little more (with the help of the link you provided above), I see that the test revealed 7.3 hypopneas and zero apneas. I'm not 100% sure what that means other than the severity of the air blockage. Like I said earlier, I'm very skeptical about these test results given the fact I didn't sleep or wear the nasal cannula for more than ~2.5 hrs. But I'm not sure what the absence of apneas means in terms of treatment options or severity.

I think it means you need to see an ENT doctor and get your nasal issues fixed... and only afterward decide if you have apnea or not... because I think you probably won't.

Pharaoh90 wrote: ↑

Wed Sep 05, 2018 5:21 am

Thanks for the helpful replies!
...
MrsRinPDX - I do have a deductible so my out-of-pocket expense is pretty significant. The mask alone was over $600, then $89 a month for 10 months for a rental fee. We have a health reimbursement account that brought the mask down to $140, which I was prepared to pay in cash at the appointment, but I didn't want to provide a credit card for the 10 month rental. That was for a few reasons but mainly I wanted to go month-to-month to see how it went since I had serious misgivings about the whole thing. They refused to proceed without a credit card so I left.
It really just felt like they weren't receptive to my concerns about cpap compliance or willing to help alleviate those fears. It was basically "well this is the treatment so you have to deal with it". The tiny little oxygen tubes sent me into full-on panic mode. They wanted me to tape the tubes to my face but I couldn't bring myself to do that. A couple times in the past when I was administered gas as a sedative for surgeries, they had to hold my hands down before I went under and immediately after awakening because I instinctively started tearing the mask away. It's more than just "oh it's uncomfortable but I'm willing to try" for me - it a major anxiety trigger to have things on my face. Plus with all of the rolling around when I sleep, wouldn't I end up breaking the machine/hoses? Is it really the case that you have no choice but to go through cpap before exploring other options? That's the impression I got from the pulmonologist's office.

No, machines aren't the only route but for many it is the most effective route. I understand cost is a hurdle and I know claustrophobia is very real. Luckily you have mild sleep apnea. According to my sleep doctor (a neurologist who specializes in sleep disturbances), dental appliances sometimes work for folks with mild sleep apnea. I think it is worth further investigation.

And then there is surgery. I wouldn't personally go the surgery route. Based upon what I have read from other forum members and from family member's experience, the results are not very good at treating sleep apnea. Plus you had that problem breathing on the table before.

I doubt you would end up breaking the hose rolling around. You get 6 feet of hose to tumble with and there are multiple hose minders out there that can keep them out of the way. As for the machine, it is usually in a drawer or on your nightstand. It's possible to pull it off the nightstand I guess. I would just take precautions to make it more secure.

Julie wrote: ↑

Wed Sep 05, 2018 10:21 am

I think it means you need to see an ENT doctor and get your nasal issues fixed... and only afterward decide if you have apnea or not... because I think you probably won't.

Thank you, I think that I will ask for a referral the next time I see my GP. The deviated septum issue is actually what I had attempted to start with when I met with the NP at the pulmonologist office, but it seemed like i was on the CPAP fast-track no matter what

MrsRinPDX wrote: ↑

Wed Sep 05, 2018 2:29 pm

Pharaoh90 wrote: ↑

Wed Sep 05, 2018 5:21 am

Thanks for the helpful replies!
...
MrsRinPDX - I do have a deductible so my out-of-pocket expense is pretty significant. The mask alone was over $600, then $89 a month for 10 months for a rental fee. We have a health reimbursement account that brought the mask down to $140, which I was prepared to pay in cash at the appointment, but I didn't want to provide a credit card for the 10 month rental. That was for a few reasons but mainly I wanted to go month-to-month to see how it went since I had serious misgivings about the whole thing. They refused to proceed without a credit card so I left.
It really just felt like they weren't receptive to my concerns about cpap compliance or willing to help alleviate those fears. It was basically "well this is the treatment so you have to deal with it". The tiny little oxygen tubes sent me into full-on panic mode. They wanted me to tape the tubes to my face but I couldn't bring myself to do that. A couple times in the past when I was administered gas as a sedative for surgeries, they had to hold my hands down before I went under and immediately after awakening because I instinctively started tearing the mask away. It's more than just "oh it's uncomfortable but I'm willing to try" for me - it a major anxiety trigger to have things on my face. Plus with all of the rolling around when I sleep, wouldn't I end up breaking the machine/hoses? Is it really the case that you have no choice but to go through cpap before exploring other options? That's the impression I got from the pulmonologist's office.

No, machines aren't the only route but for many it is the most effective route. I understand cost is a hurdle and I know claustrophobia is very real. Luckily you have mild sleep apnea. According to my sleep doctor (a neurologist who specializes in sleep disturbances), dental appliances sometimes work for folks with mild sleep apnea. I think it is worth further investigation.

And then there is surgery. I wouldn't personally go the surgery route. Based upon what I have read from other forum members and from family member's experience, the results are not very good at treating sleep apnea. Plus you had that problem breathing on the table before.

I doubt you would end up breaking the hose rolling around. You get 6 feet of hose to tumble with and there are multiple hose minders out there that can keep them out of the way. As for the machine, it is usually in a drawer or on your nightstand. It's possible to pull it off the nightstand I guess. I would just take precautions to make it more secure.

Agreed about the surgery - that would be an absolute last resort for me. I was more interested in finding out the severity of my deviated septum and how it might be causing me to snore. I would also have liked to explore an oral appliance if OSA was was unrelated to the deviated septum.
What I'm struggling with too is the fact that my Diagnostic Report says "0.0" beside each of the AI fields as well as a "0" beside the Event Totals, Apnea field. Yet page 2 says "The study indicates the patient has mild obstructive sleep apnea and mild oxygen desaturation." Is OSA still indicated when the total apneas is zero? The only fields with values are HI of 7.3 and Events Total, Hypopneas 38. This is all new/confusing to me
Added to the mix is my knowledge that I didn't sleep or wear the nasal cannula for more than 2.5 hrs. I can't understand how these test results are even valid. It says it recorded 7hrs and 22mins of data but I was awake for most of it and not even wearing all of the equipment...

Pharaoh90 wrote: ↑

Thu Sep 06, 2018 5:03 am

"The study indicates the patient has mild obstructive sleep apnea and mild oxygen desaturation." Is OSA still indicated when the total apneas is zero? The only fields with values are HI of 7.3 and Events Total, Hypopneas 38. This is all new/confusing to me

The Hyponeas earned you the diagnosis. Obstructive Sleep Apnea diagnosis includes Hyponeas in the criteria despite it not being labeled an "apnea".
Think of hyponeas as obstructive apneas that haven't grown up to full adulthood but they can be just as harmful to the body as the full grown OAs.

AHI is composed of 3 categories of events related to breathing..and AHI means Apnea/Hyponea Index with Index meaning the hourly average.
http://healthysleep.med.harvard.edu/sle ... ng-results

Apnea Index...either obstructive or central...where the reduction in breathing is 80% or more and it lasts at least 10 seconds.
So there is the obstructive Index and the Central index that composes the AI or Apnea Index.

Hyponea Index or HI...this is were the reduction in breathing can be 40 (depending on whose criteria is used) to 79% and lasts for at least 10 seconds.
They can even cause oxygen level drops if the reduction in breathing is high enough or even at the low percentage of reduction if a person has enough of them close together.
Do you think that in terms of effect on the body that there is really much difference in a hyponea that is a 78% reduction in air flow that lasts 15 seconds and the full grown OA that is an 81 % reduction in air flow? There's not really much difference and hyponeas can cause the same problems as the obstructive apneas so they are part of the diagnosis criteria.

Don't make the mistake of ignoring hyponeas thinking they aren't real apneas and don't matter much. They matter alot for several reasons.

What did your oxygen levels do with your sleep study? Did they drop much and often or prolonged?

So you have "mild" OSA in terms of the average number of events per hour....and its all hyponeas....it's still classified as OSA because hyponeas are part of the criteria.

If your oxygen levels weren't in the toilet for very long...I don't blame you for wanting to explore an oral device.
From what I have read the "success" stores are usually the ones with about 50% reduction in events...which if that happened to you would bring your average down to 3 ish...below diagnostic criteria.
I didn't opt for that because despite an overall AHI of around 12 on my sleep study my oxygen levels dropped to 73% and I am what is referred to as REM dependent meaning my OSA is much worse during REM...to the tune of over 50 per hour. So despite the overall 12 AHI that got lowered mainly because of the time I wasn't in REM and not much was happening if I had opted for an oral device it would have probably worked great in non REM sleep where my OSA is relatively mild but it wouldn't have offered enough reduction during REM.
50% of 53 per hour...is 26 per hour and that's still way too many events.

The same thing can be said for sleeping on one's back vs side sleeping....meaning a person might not have much of anything exciting happen when on their side but everything goes to hell when they are on their back.

I don't know if your home sleep study gave you sleeping position results or not...or if it reported sleep stages (not all home sleep studies will do sleep stages) or not.

If your diagnosis did point to supine sleeping being the biggest culprit some people do well with apnea/hyponea prevention if they stay off their backs...easier said than done though.

So you do have some options and an oral device is one that could be considered and is worth trying.
I didn't because of REM events...I knew it wasn't likely going to help me all that much and with the oxygen levels going down to 73% I didn't want to risk it...and I had a family member who was already on CPAP and I actually welcomed it. It's not as horrible as some people think it is.

So evaluate your options...and if you do decide to go with the oral device first...make sure you confirm that it is working by having another sleep study done while wearing the device.
CPAP is considered the gold standard though and that's why you got the call about the machine...that's what people usually start with because it will work and work quite effectively. I rarely have any sort of apnea event now in REM....and overall my AHI is averaging nearly 0.0. It does work and it was never that big of a deal for me to get used to using the mask and machine.

Now for some others...for various reasons it is a big deal to get used to using the mask and machine and only you get to make that decision or determination.

FWIW...my OSA numbers never changed with sleeping position...mine was the REM thing no matter what position I was sleeping in.
While it's common to have OSA be worse when sleeping supine...it's not always a given that side sleeping will cause a significant reduction in terms of the number of events. Each person is an individual and being that...there isn't always something that holds true for everyone. Everything about sleep apnea and the ways to prevent it all come with a huge YMMV sticker.

Oral devices...don't come without some baggage too. Everything has baggage. It's not always comfortable..it doesn't always work and it's sometimes worse trying to sleep with it in the mouth than using a mask and cpap machine.

Hi Pugsy,
Thanks so much for your reply - this information is all extremely helpful and much appreciated!
What you are saying about hypopneas vs. apneas totally makes sense and I see that hypopneas alone aren't necessarily less serious. In terms of oxygen, I see a few places on the report that reference oxygen. There is an ODI value of 7.6 and a Total of 55 - not sure what that means. There are also Oxygen saturation percentages. Baseline is 94, average is 94, and Lowest is 89. A note about the pulse oximiter I was given - it smelled very strongly of perfume, so it must have been used before - I took it off and on a few times during the night to try and clean it and make the odor stop Don't know if it muddled my results at all.
The home sleep test I did just had (the much loathed) nasal cannula, a finger pulse oximiter, and a chest band which I believe was to measure rising and falling of the chest during breathing. The test results reference supine/non-supine/upright, but I don't really know what that data is meant to represent; for example, it says Supine Time-hr 5:05 Percentage 97.5 HI: 7.3. Is this saying supine for 5 hours? Or 5:05 am? If it's meant to be a total number of hours, I really don't understand how it got that data because I was up walking around and sitting in a chair until 2 am
The test results make no mention of sleep stages and I don't think that was measured by the equipment I had.