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Those with sleep apnea/UARS - do you have trouble breathing during the day?

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singingkeys +0 points · 21 days ago Original Poster

March 2018 had a sort-of sleep study. Only slept for 2.75 hours for the whole study, it was after 11pm before they got the electrodes on me, the lady was unprofessional and I hated the whole process because it shouldn't have been that way. With that being said, that 2.75 hours showed a 4.7 Apnea-Hypopnea Index. 50 "breathing events" as RERAs resulted in a Respiratory Distress Index of 18.1. Sleep doctor read the results, said I 0.3 away from mild sleep apnea and said, "Want to try a CPAP?" I declined. My ENT doc later did a CT scan of sinuses, found deviated septum and enlarged turbinates. She felt that fixing those would help my sleep issues, so I had surgery in July 2018. My airways are physically larger and less obstructed now, so I do breathe better and it doesn't take as long to breathe in/out, but my sleep is still horrible. Sleep efficiency was listed as 40.3%. I'm still thinking that I have either Obstructive Sleep Apnea or Upper Airway Resistance Syndrome. I understand that some clinics won't even acknowledge or treat UARS. Some nights I feel much more comfortable sleeping on my stomach or sides and don't wake up as much or at all as I do compared to on my back. When I breathe out sometimes during the day, I feel a little flip of tissue or something in the upper part of my throat and it makes a sound like it blocks my airway for maybe half of a second or less during that sigh. That happens rarely, so I suspect maybe OSA when sleeping. No drop in SPO2 levels noted and the doctor seemed to think that was good.

I contacted my sleep doctor/clinic today to see if they'll write me a prescription for ResMed Airsense 10 based on my 18.1 RDI from my previous sleep study. If they're willing to do a trial first, I'm all for that. I just got new insurance through a new job, so new deductible and all out of pocket. My previous insurance at the job that I had before had the deductible met, so they paid for the study, doctor visits, etc. Probably would have paid for CPAP, but I had to take another job. When the sleep doc reviewed my study results earlier in the year after the study, he asked if I wanted to try CPAP, but the ENT wanted surgery later in the year, so I declined. Obviously, surgery hasn't helped the sleep issue. I have informed the clinic of this and and that I have a new job/new insurance. Waiting to see what they'll do. Today I felt short of breath and just yawned all day every x minutes. My breaths never seem deep enough and do not satisfy the feeling to take even deeper breaths. Just sitting in my computer feels like my lungs just do not want to take full breaths and instead just want to take these little lazy/shallow breaths and sometimes feel "too tired to breathe" at all and would rather stop and rest if I didn't make them take deeper breaths. I guess I would say that my natural breathing feels shallow if I don't force myself to take deeper and longer breaths. I have felt that all day long today and I'm not sure if it is just because I haven't slept very well over the past x days or what. My resting heart rate is about 110 sometimes, as well. Feelings of "heat/pressure" in the face and hands, but blood pressure is not high and around 120/80 when I check it. If I bend over, it feels high, however...I'll feel pressure increase in my face and hands while bending over to pick something up from the floor. Also, when I'm tired like this, my lips are exceptionally red as if super chapped (but they aren't). There just seems to be more blood flowing through them or something. I fall asleep in the passenger seat of a vehicle on a 10-15 drive. The bumps make me sleepy. I fall asleep in front of the computer, on the couch while watching tv, etc. I'm 36 and it has been this way since I was likely a pre-teen. School was awful. Some days I'm so tired that my words seem slurred and I can't speak properly. Are any of these symptom that you've experienced before getting on CPAP with OSA/UARS? Family just doesn't understand and it is driving me crazy. "Just go to bed earlier and get some rest!" I want to scream, "I DO go to bed and it isn't freaking restful! My sleep is not like your sleep!"

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Biguglygremlin +0 points · 21 days ago Sleep Commentator

Hi singingkeys

Today I'm pretty much where you described so I might have misunderstood your query but I too feel like I am only shallow breathing much of the time during the day.

Sometimes it is more pronounced especially when I first wake up and it seems like I am really struggling to breathe but the rest of the time I am only marginally aware of it.

Recently I had the misfortune to visit the local hospital and although they dismissed the cause that took me there they couldn't allow me to leave without meeting basic medical criteria.

Although I felt no different than I do all the time they forced me to do breathing exercises before they could release me because my 02 levels were down in the 70s and they had to be 95 before I could be allowed to leave.

I am now waiting for an 02 monitor that I ordered online so I will have one more thing to ponder or ignore. :)

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singingkeys +0 points · 21 days ago Original Poster

I ordered one online for like $90. Wristwatch-type with the finger sleeve. SPO2 did not drop much and stayed in the mid-90's to upper 90's. I saw that my heart rate spikes all over the place after several hours of sleep, however. So if I have OSA, it isn't badly enough to do anything but wake me up since oxygen levels aren't dropping much. It seems to be the RERA's from REM sleep that make me feel miserable. Waking up 18 times per hour even when you aren't stopping breathing is awfully tiring for in the morning.

Sounds like you would benefit from an O2 monitor. If you got the one you can sync with the computer, it will be very helpful.

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singingkeys +0 points · 21 days ago Original Poster

Oh yeah, a fair warning...they're not very comfortable. My finger and wrist were irritated all night and I wanted those things off from them. If you move around too much, it will lose the reading and look like it spiked way high or low and really it was just your finger/hand moving. So you can get false readings that way.

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Biguglygremlin +0 points · 21 days ago Sleep Commentator

The thing I ordered should sync with devices but I don't know if Sleepyhead can incorporate it.

I doubt that it will tell me much of benefit anyway. I ordered it out of idle curiosity.

Knowledge is only useful if you can act on it and in my case the underlying process is getting old and becoming unfit. Until I find a way to rewind or at least halt those processes the numbers are all irrelevant.

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singingkeys +0 points · 21 days ago Original Poster

There are a number of exercises you can do to attempt to strengthen/tighten the loose muscles in the throat, tongue, etc.

https://www.cpap.com/blog/exercises-alleviate-sleep-apnea/

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Biguglygremlin +0 points · 21 days ago Sleep Commentator

Yes I should be doing a lot more but everything conspires to prevent it. Good sleep is the key to so many essential systems and as it deteriorates all those systems deteriorate and compound each other. Eventually the symptoms become too entrenched and too profound to be easily overcome.

There needs to be more awareness and support for early intervention before it gets that far and I don't mean CPAP machines.

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Biguglygremlin +0 points · 21 days ago Sleep Commentator

I didn't mean to hijack your thread singingkeys.

Have you ever consulted with an immunologist or endocrinologist?

Sleep disorders are just part of a much bigger picture and your history has similarities to others we know of who have really long term CFS (for want of a better label) which can also conspire to undermine many other body cycles. Sometimes the underlying cause cannot be fixed but it is still possible to monitor and enhance the secondary issues with supplements like Reandron.

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singingkeys +0 points · 21 days ago Original Poster

As I became older, I started to notice these things more prevalently, but I suspect they started around my pre-teen or early teen years. School was awful, I couldn't concentrate and I was exhausted all of the time. Now when I wake up sometimes, I "know" a general idea as to why. It is either OSA or UARS. I wake up an awful lot every hour due to what feels like my airway narrowing/shutting and I make an odd noise each time I wake up. I did it this morning, actually. However, I suspect that my O2 isn't dropping because I wake up immediately as the airway shuts either fully or enough to make it too hard to breathe and the brain wakes up the body for more lung air pressure (which I understand to be the RERAs). It happens either mostly or completely when I'm on my back. So I'm waking up who knows how many times per night, but not having my airway shut for the length of time that many OSA people seem to have to cause their O2 to drop. I still have similar effects with slurred speech and feeling "too tired" to want to do anything in general each day. For me, I cannot enunciate my words without really trying when I'm tired. I definitely can't focus enough to drive until I get this under control. As long as I stay moving, I feel tired, but energetic. If I had a desk job, as the sleep doctor told me, I'd be snoozing quickly.

If the sleep study wouldn't have shown anything, my primary care doctor would have followed up with an endocrinologist. I had already been to a neurologist, had all common blood work, thyroid checked, etc.

Even if CPAP seems to improve it, I may follow up with another sleep study without CPAP and bring my readings from the CPAP to have them make sure it is working and nothing else is going on.

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Sierra +0 points · 21 days ago Sleep Enthusiast

If you have a copy of your sleep study report it should document the breakdown of events. If you divide the number of obstructive apnea events by the time in bed, it will give you an obstructive apnea index. Since your total AHI was 4.7 the obstructive index alone will be lower. It will give you an idea of how significant the obstructive issue is. Just based on the numbers you have given, it is more likely the RERA events are disturbing your sleep more than the obstructive apnea events.

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singingkeys +0 points · 21 days ago Original Poster

At this point, assuming that they're going to be willing to give me a CPAP...I'm trying to figure out whether to go for full face mask or to try the nasal pillows first. I've read through some of the posts on this board and a lot of people seem to say that nasal pillows are the most comfortable for those with mild OSA/UARS if they don't have mouth breathing issues. Others say that the hole that you're supposed to exhale from is typically so small that they feel like they're suffocating/drowning and many discussed trying to enlarge it so that they could exhale better.

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Sierra +0 points · 21 days ago Sleep Enthusiast

Finding the right mask is often the most difficult part of using CPAP. From what I know of your situation I would be very comfortable suggesting that the ResMed AirSense 10 AutoSet For Her would be your best bet for a machine. But, suggesting a mask is much more difficult.

Here are my thoughts based on my personal experience with 5 different masks; 2 nasal pillow, 1 nasal, and 2 full face.

Nasal Pillows: They tend to be the smallest masks with the least contact with the face. For this reason they can be more comfortable for side sleepers as they are less easily dislodged by the pillow you sleep on. Because they seal semi-in your nose they tend to seal easier with less tension on the headgear, and as a result can be the most comfortable. They are kind of a minimalist mask, and can have somewhat flimsy headgear (like the ResMed P10).

Nasal Mask: These are like a mini full face mask, but only cover the nose. They are bigger and can be more easily dislodged than the nasal pillow type. For that reason it may be necessary to use more tension on the straps, which can make them a bit less comfortable and leave temporary marks on your face. They tend to have much better headgear. Leaks can blow into your eyes if they do not seal properly. Mirage FX is one example.

Full Face Mask: Have the most contact with the face, and since the pressure has a larger area to act on, they need the most tension and can be hard to seal. And when they do leak the air can blow into your eyes which is very uncomfortable. They do allow you to breathe through your mouth, which is not necessarily a totally good thing. ResMed AirFit F20 would be one example.

Then there is the issue of so called "mouth breathing". I find that a bit of a misnomer, as it is very difficult to actually breathe air in when you are under pressure with a CPAP. The real problem is that when you open your mouth air leaks out, and sometimes it can be a lot of air. This reduces the effectiveness of the CPAP, and dries out your throat. Mouth opening and loss of air through the mouth is the main reason users go to a full face mask. In my opinion I think this can be a mistake and should be used as a last resort. The other, and I believe better option is to use mouth taping to stop the air loss from the mouth. We were made to breathe through our nose, not our mouth, and the combination of mouth tape and a nasal mask ensures you breathe through your nose, and not your mouth. Here is a video on the benefits of mouth taping:

How to Mouth Tape for a Better Sleep

So if you have an opportunity to try different masks I would suggest the following nasal pillow masks to try first. Pick the one that feels the most comfortable to you. And you will have to be prepared to mouth tape if you find you open your mouth during the night. Using SleepyHead will tell you if that is a problem.

  • ResMed AirFit P10 - The headgear is kind of flimsy, but I think it has the best nasal pillow design. I now use this mask after trying the others.
  • F&P Brevida - Has a better headgear, is a little larger and noisier
  • Dreamwear Gel Nasal Pillow - Has over the head hose routing, but the tubes up the side can by noisy (as reported by users)

As for your comment about nasal pillow masks having a smaller air outlet and as a result are harder to breath out through, I have not experienced that effect at all. Remember that you are breathing out against the CPAP exhale pressure. That adjusts automatically and is effectively constant for the different mask types. Larger full face masks do have a larger purge flow - constant air leakage. This is because they have a larger air dead space than a smaller mask like a nasal pillow. The higher purge flow is to ensure too much CO2 does not build up in the larger dead space.

Generally the most comfortable way to set up an AirSense machine is to use pressure reduction on exhale but only during the going to sleep ramp period. For example if the ramp start pressure is 7 cm, and EPR is set at 3, then you get 7 cm pressure on inhale, and 4 cm on exhale. To most that feels very comfortable with no suffocating feeling. The more common problem is that some sleep clinics don't set the machine up this way, and leave the machine at the default settings which is 4 cm for the ramp, and sometimes the minimum pressure is set low at 4 or 5 cm. That can cause a suffocating feeling. In short your machine setup is mainly responsible for the breathing in and out effort, not the mask.

Hope that helps some,

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singingkeys +0 points · 21 days ago Original Poster

I got a call back from the sleep doctor's assistant regarding the prescription for a CPAP. She said they do a 3-night trial "to see if it will even work" for it, but she wasn't sure of what the cost for that is. From what I understand, a lot of people seem to indicate that it can take up to 2-3 months to even start feeling effects from using the CPAP in some cases, so that 3-day trial isn't worth squat. She said I could buy the ResMed Air Sense 10 from them, but it is about $1,800. Or, she said I could buy it online, which I would certainly choose to do because I have seen some sites where it is only $500 - $700 for a brand new one. She also stated that it doesn't matter whether I have insurance or not because most insurance companies do not acknowledge UARS as an actual condition and therefore won't pay a dime for it. That's a little disappointing. I'm going to save a bit of money back and decide in the near future what would be best to do.

I'm also a bit confused as to how...if I pay out of pocket for this stuff, doesn't that go towards my deductible or do they just cast off the whole thing? Seems like that should count for "out of pocket" expenses towards my deductible since I would be paying for everything.

I guess I'm going to have to do all of my setup and configuration for myself, anyway...they don't seem to want to do anything but write the prescription and pretty much indicate that I'm on my own for everything.

Are we somewhat certain that a CPAP should help or should I start saving for another sleep study which will probably be around 2 grand or so before buying a CPAP?

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MountainGoat +0 points · 11 days ago

I have a small fingertip pulse oximeter and found that even while awake and relaxing or working at my desk, my SpO2 would drop below 90%, even going as low as 86%, especially at the altitude I work at (~7,200 feet). This had me ask the endocrinologist treating other issues for a referral to a pulmonologist. The pulmonologist reviewed the sleep study that was done in May 2017 and suggested that I try CPAP.

I asked him how CPAP could possibly help for daytime oxygen desaturation and he explained that the body's 'setpoints' for breathing becomes disturbed with long term untreated OSA and that when that is 'reset' with CPAP treatment, resting O2 desaturation while awake often resolves too. I've only been using CPAP for four days, so way to early to tell but I'm hoping he is right.

I'm sure it is different for everybody, but it did make sense to me.

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Biguglygremlin +0 points · 11 days ago Sleep Commentator

So low oxygen can be habit forming?

I had suspected that but hadn't clarified it in my thinking till now.

Unfortunately I also suspect that fatigue and most other symptoms of chronic illness is also habit forming.

We seem to gravitate back to where we were even if it was a bad place.

Is there an effective mechanism for real change?

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MountainGoat +0 points · 11 days ago

Habit forming is a very good way of putting it. Bad habits, and I have many of those, are unfortunately also habit forming.

The body is very adaptable and will always rather adapt than die. Changing for the better fortunately can use that same mechanism. As an example, I was treated for very high blood pressure in 2016 and because the treatment was so effective, it dropped my blood pressure quickly, although it still was slightly above normal. However, that quick change was enough to make me feel dizzy every time I got up. My blood pressure is now lower than that and I feel fine.

I think this is the mechanism for real change, but it works in both the good and bad direction, depending on what is happening in your body.

The way I understood it is that your body will become used to the higher level of oxygen and undo the changes its made to cope with the lower oxygen saturation caused by OSA.

The OP's experiences are interesting. If her sleep issues didn't cause O2 desaturation, there isn't an obvious reason for the body to have adapted either by changing breathing patterns or making more red blood cells. However, I find the same thing when my red blood cell count is as high as it currently is. Very pink hands and red lips, especially when back at sea level.

I have to add that I was in the same position with buying a CPAP v having another sleep study, which is what the pulmonologist wanted. The cost of that, plus the titration was almost as much as the CPAP, so decided to rather buy the machine as my elevated haemoglobin and haematocrit definitely pointed to an issue with O2 desaturation.

So far, I think it was the right decision.

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