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New user with questions and frustrations
#1
Hello,

I'm glad you are all out there to help. I have been on therapy for 12 nights. I have many questions and some frustrations. I should probably break this up into more than one post and I'll probably be putting in too much information, but I'm not sure what to exclude.

I did not have a sleep study at a sleep center because my insurance wouldn't pay for it since I had a low Epworth score. I'm not particularly tired during the day, however I have ADD and take a pretty high dosage of Concerta, so daytime sleepiness is more than likely masked. I also have never slept well, even as a child and I'm used to it, which may also keep me from feeling tired during the day. Anyway, I had an at-home study with no titration follow-up. I did not get the specific results but only a diagnosis that was positive for moderate sleep apnea. The sleep study people read the machine and sent the diagnosis to my family practitioner, so I am not working with a sleep specialist doctor.

(with the ADD in mind, is there any way to turn off the moving/animated smilies at the left of the page. they are distracting the h&*% out of me.)

After the sleep study it took about 2 months for the insurance company and the medical equipment company to get on the same page and get me a machine. The medical equipment company is just about as difficult to deal with as Time Warner Cable, if you have experience with them, you know what I mean.

They first fitted me with a full face mask and it was too large, plus, I don't think I need a full face mask. Then I got nasal pillows but the DME guy called me back that night and said he checked my levels and their company didn't recommend the nasal pillows for pressure above 14 and mine was sometimes 14.8 so they wanted me to go back to the full face mask. I told him I chose not to do that. Also, I might consider a nasal mask instead of the nasal pillows, but I already changed once.

Does anyone have a mask they can use reading glasses with?

My prescription is for 2 weeks of auto pressure between 4 and 20 and then it is to be set at a constant rate at the 95th percentile. The DME guy said that would be 15 and according to the prescription they would set it for that on this coming Tuesday, the end of my 2 weeks. I have written my physician and asked to change the prescription. I feel suffocated at the level 4 and whenever the machine gets anywhere close to 15, I wake up and stare at the clock until my 4 hours are up, for compliance reasons, then take the darned thing off. I can't sleep at that high pressure. Most of the time, it doesn't need to be that high, so I asked the doctor to change the prescription to start the ramp at 6 then go to an automatic variable between 9 and 16. I have not heard back from her, yet, but it is the weekend. I would also like to have some exhalation relief, but the technician said that the doctor would have to prescribe that, too.

I have not yet downloaded the ResScan software. I just found out about it last night.

I see from this forum that I can easily get to the clinician's menu and change my own levels if the doctor doesn't change the prescription. I have no qualms about doing this, but wonder if since my insurance company is paying for most of the machine and it won't be officially mine for 10 months, will the compliance people at the DME who report to the insurance company allow me to do that or will they consider it noncompliance? I would consider just paying for the equipment myself if this is the case, but I have no idea how much that would cost.

Now, onto the next issue. I did say that I am used to getting less sleep than most people, however with this blessed machine, I'm getting even less than I usually do and it is making me crazy. I didn't go to sleep last for more than 3.5 hours. The only 3 nights I have slept well are nights I have taken a sleeping pill, but I don't like to do that every night. I'd like to turn on some meditation music or sleep visualization talk thing but then I'd have to put on earphones and I feel if I have another wire and appliance it would only add to the discomfort. I have been 100% compliant for 2 weeks (at least up to the 4 hour mark) How much longer will this feel like torture, serious torture? I used to think sleeping with a special sock to pull my toes back for plantars fasciaitis and a brace on my arm for carpal tunnel and night sweats due to menopause was bad. This makes those things seem like a walk in the park. (I guess that was just a whiny rant, but the real question is how long will it take me to get used to this and at least get back to my usual fall asleep time of 45 to 90 minutes?)

One more thing. Are there studies to prove this therapy increases life span or decreases stroke or heart failure. I understand that people with OSA have a higher rate of stroke and death but that does not exactly translate to CPAP therapy decreasing morbidity. I don't want to do this to feel better during the day. I already felt fine. If it weren't for my partner's instance, I would never have begun this therapy. I want to see efficacy data from well done studies. It's a quality of life issue. I dread going to bed and don't find this the least bit restful. I'm more tired during the day thank I ever remember being. (oops, another rant)

Suggestions? Information? (I like information)

Suzanne in NC (where it is already very humid, so do I need the humidifier? It makes my nose feel wet.)

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#2
I really sympathize and can't answer most of your questions. I can tell you that changing your settings makes no difference to the insurance company. They just want to know that you are using the machine.
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#3
(05-17-2015, 02:36 PM)Mosquitobait Wrote: I really sympathize and can't answer most of your questions. I can tell you that changing your settings makes no difference to the insurance company. They just want to know that you are using the machine.

'Mosquitobait is spot on. If insurance is covering the cost all they care about is if you are using the equipment 4+ hours a night for 70% of the nights in the 1st 3 months of treatment. They do not care what you pressure settings (or any settings) are. as long as the doctor feels you are 'benefiting' from the treatment.


Using FlashAir W-03 SD card in machine. Access through wifi with FlashPAP or Sleep Master utilities.

I wanted to learn Binary so I enrolled in Binary 101. I seemed to have missed the first four courses. Big Grinnie

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#4
There are people on the forum that use the P10 mask at pressures over 14. Go for what needs to be done and keep your eye on the data via Rescan or Sleepyhead software.
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#5
I use wisp nasal mask and after a few years of a ffm that was making my sleep miserable, this mask has been a blessing. Also, I had trouble sleeping well when I had a regular cpap machine and so I was switched to a vpap machine. I still have fragmented sleep but when I am asleep, I sleep well.
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#6
Hi Suzannekty,
WELCOME! to the forum.!
You might try a nasal mask or a pillows mask, such as the P10, to see if that is more comfortable for you.
Hang in there for more suggestions and answers to your questions and much success to you with your CPAP therapy and fine tuning it.
trish6hundred
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#7
Hi Suzannekty

Welcome. You will get opinions, observations, and fact here.

Good question about whether the ill effect of sleep apnea can be reduced or eliminated with consistent CPAP usage.

See http://www.apneaboard.com/forums/Thread-...4#pid95414
which points to a study of efficacy of CPAP for moderate to severe apnea patients, specifically related to morbidity.

I think this is the landmark that has been used to drive the insistence on 4 hours as the minimum.

In your quest for better CPAP usage and sleep, consider getting up at the 3 to 3.5 hour mark, do something mildly relaxing, take a nice sip of water, and go back to the CPAP. I find that I take at least 45 minutes break before I am ready to go back under.

I firmly believe that CPAP use will increase your ability to manage ADD.

In your quest for knowledge, I suggest always add "NIH" to any internet searches to receive mostly studies in the first hits.

QAL
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#8
Hi, I feel your pain. I am new to this as well and like you I don't feel tired during the day, however I do have severe sleep apnea and I have been told that it will help with my quality of life. Consider this, if your blood oxygen level falls below 90% several times each night for say 10 seconds or more, how much damage can that cause in terms of cell death around the body. This type of thing can lead to decreased mental function as well as heart damage. This is why I choose to stick it out. I have the same machine as you and it is a really good machine. It is capable of tracking all kinds of sleep parameters so that you can review them and see if it is reducing your AHI number. Get into the set up menu by pushing the knob and the home button at the same time for 5 seconds. In the set up menu you can turn on EPR relief. Set the EPR to full time and set the level to 3. This will help with exhale so you don't feel like you are fighting the machine. In the set up menu you can adjust your max and min pressure to feel more comfortable with it. I had to adjust mine as well because mine was set 4-20 and at 4 I felt like I couldn't breathe so I increased this to 5.6 which helped. I also set the max to 9.0 and for me this worked as my AHI is 0.0 at this setting. Make it comfortable for you so you can use it and if you notice your AHI is more than 5 you can slowly increase the pressure until your number gets better. I hope this helps. I would make sure your doctor is in the loop as well.
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#9
Ohmy 
I just downloaded the ResScan software and I am trying to make heads and tails about the Leak rate portion of it. Are these good readings:

Leak - L/min
Median: 0.0
95th Percentile: 1.2
Maximum: 141.6

When I check the reading on the display of the machine it gives me a green smiley face that all is okay Grin

Am I reading this incorrectly?
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#10
(05-22-2015, 01:55 PM)franswahili Wrote: I just downloaded the ResScan software and I am trying to make heads and tails about the Leak rate portion of it. Are these good readings:

Leak - L/min
Median: 0.0
95th Percentile: 1.2
Maximum: 141.6

When I check the reading on the display of the machine it gives me a green smiley face that all is okay Grin

Am I reading this incorrectly?
Any leak over 24L/min is considered a major leak. Also, please provide the median, 95%, and max pressure listed in the statistical report of ResScan for all nights that are available. Most people have a suffocating feeling with the pressure set to 4 and usually set it to 6 or 8 for a starter.

I've been playing with pressure ranges on the Resmed and, in my experience, find their algorithm somewhat aggressive toward the upper pressure limit. I wake-up when the unit goes to the upper end of the pressure setting. I've since reduced the top pressure setting to the 95% value and my AHI's and sleep quality have improved significantly.

Hang in there; Getting this therapy fine tuned can be a real biddy!

______________________
Useful Links -or- When All Else Fails:
Posting SleepyHead Charts in 5 Easy Steps
Robysue's Beginner's Guide to Sleepyhead
Apnea Helpful Tips
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