Newbie Needing Help w/ Sleepyhead ?

I understand and agree. As someone with an interest in efficiency / technology, I am always interested in trying to fix solutions.

I've had a very negative experience with my diagnosis and the amount of time to get to this point (& I recognize that I have further to go).

1. Doctors unable to diagnose / unwilling to recommend sleep study. I gave multiple doctors (Multiple GPs, Neurologist, Cardiologist) a full rundown of my symptoms, plus a journal. Many of these doctors were willing to to eliminate potential causes, but none pointed to a sleep disorder. This ended up taking multiple years and a new doctor who I challenged to find the cause.

2. Amount of time between sleep study recommendation and receipt of CPAP. I definitely could have improved this timeline more, but I was already following up a bunch to get to this point.

July 2016 - Initial Recommendation of Sleep Study by GP
August 2016 - Referral Appointment by ENT doc (I believe an insurance requirement)
August 2016 - Shipped a home sleep monitoring device to me. Did not work.
September 2016 - Shipped home sleep monitoring device a 2nd time. Did not work.
September 2016 - 2nd ENT appointment to get lab sleep study.
November 2016 - Sleep Study #1 - No CPAP Titration. Diagnosed with Sleep Apnea.
February 2017 - Sleep Study #2 - CPAP solves issue in overnight.
February 2017 - 3rd ENT Appointment - Prescribed CPAP
March 2017 - Received CPAP Machine
June 2017 - Sleep Doc Appointment. BS - guy's memory card reader did not work. He did not give any feedback.

Countless calls / 2 appointments with DME for fitting.

3. Lack of follow up from any doctor (GP, ENT, or Sleep Doc). DME only cares about compliance. No active monitoring of any data.
No one checking on whether mask works, whether it was leaking, how was I sleeping.

I came across this company, which would certainly help people get diagnosed / treated faster.

http://www.sleepreviewmag.com/2017/08/n ... nt-7-days/

FoggyBrain24 wrote:Thanks all. I taped my mouth up last night with duct tape (carefully...ha). The tape stayed on all night so I think it's safe to say last night was not mouth breathing. I did use the ace bandage which is a bit tighter than the chin strap.

I had worse leaks than usual. I don't recall waking up to anything, but I did not sleep particularly well. I did try to add a "half-caffeine" coffee back in yesterday (at 1 pm), so I don't know if that could have any role, I've always been a little caffeine sensitive. The pressure seemed to fluctuate a bit more. Overall, not a great night.

Thoughts on what to try next? I feel like I would like to give it another night with just the bandage / chin strap and this mask and see what happens. I feel like this mask has been a lot better, but obviously, the leaks / flows are inconsistent night to night.

https://imgur.com/a/uTG9u

If you are correct and the tape did its job, then you mask is leaking. Too much IMO. You don't remember the leaking causing you to wake up but that does not mean that leaking is not disturbing your sleep. Prior to CPAP treatment my AHI was 60 - I did not remember waking up every minute but I was.
I see no good reason for not trying to improve your mask seal. Pillows seal the best. Then I would explore higher pressure.

Thanks Ted / Pugsy.

So I wrapped an Ace Bandage around my head to keep my mouth closed and did my best to correct all seals. Here is what I got, which is pretty good (other than VS2 snores). Pressure stayed very consistent. I feel good this morning, cautiously optimistic that it's going to be a very good day.

Wondering if you still think the leak rate is too high? If so, I can talk to my DME about trying the nasal pillows. From my seat, I don't think I am waking up at all due to leaks and to be honest, I cannot even feel air escaping anywhere.

https://imgur.com/a/uTG9u

I would be very happy with those results if it were me and not worry about the minor blips. The bulk of the unevenness of the leak line is related to pressure increasing except for the part at the very end of the night.
Ted is likely going to want a prettier leak line.

You have to decide what YOU want and will make YOU happy.

I learned a long time ago that sometimes the cure to fix something ends up causing more problems with my sleep quality than what I was trying to fix.

I do also think that for sure try a nasal pillow mask. They do stay in place more easily than the cushion on the DreamWear.
I agree with Ted on that part.

Thanks. I am happy with this as well.

I do plan to reach out to my DME to try to understand my insurance / mask replacement plan.

Can I ask - can you point me towards the best way of understanding insurance / DME? Is there a specific thread on here or will I need to speak directly with my insurance company? I know they cover different replacement items but want to ensure I keep my personal cost as low as possible.

Even any help in understanding how to navigate the insurance market with sleep apnea.

Thanks!

OK, I called and got the runaround on a bunch of things. Please let me know if I should start a new chain. Aetna did cover my sleep studies in full, which was great.

I have been assigned Continued Care of LI as my DME provider. They, on the other hand, have not contacted me once regarding my therapy, equipment, or medical supplies.

My understanding is that I can potentially use CPAP.com or another resource and my insurance would be billed? Does anyone just order equipment on their own and submit to insurance for reimbursement?

I've read different things on here, but I am curious how often most people replace different equipment.

Philips Dreamstation - 5 year useful life (insurance won't replace inside of that period). I am curious, if someone drops this machine, what happens? Do you pay out of pocket? Is there insurance? Do most people get a 2nd device after 5 years and then they have a back up?

Heated Tube - Replacement schedule is every 3 months. I've had for 6 months, have not replaced. Wash weekly.

Filter - Replacement schedule is 2 / month? I replace this every month.

Water Chamber - Replacement schedule is every 6 months. Have not replaced yet, this doesn't seem necessary. Wash weekly.

Headgear - I believe she said every 3 months? I haven't replaced, but also am using different mask.

Mask - Every 3 months. I recently changed to the DreamWear mask. I did not get billed yet. Ideally, I would keep this, but ask them to send me the Nasal Pillow mask also. If they let me try it out for a week, I can just decide which I prefer and keep one. I am debating doing this via CPAP.com if I could or at least shop around for the cheapest price.

Anything I am missing?

FoggyBrain24 wrote:My understanding is that I can potentially use CPAP.com or another resource and my insurance would be billed?

CPAP.com does not bill insurance in lieu of payment. You pay full price up front and they will furnish you a universal claim form for you to turn in to your insurance company. As to whether or not your insurance will reimburse you for that purchase..that's up to your insurance company. Some won't cover it at all (Medicare is one of those) and some will allow it but cover it at a reduced "out of network" rate.

FoggyBrain24 wrote:I am curious, if someone drops this machine, what happens? Do you pay out of pocket?

You pay for it if your insurance says " so sorry you were clumsy"...you pay to either repair or buy another.

FoggyBrain24 wrote:Do most people get a 2nd device after 5 years and then they have a back up?

Again it depends on the insurance. It used to be quite commonplace for there to be an automatic replacement and then yes you keep it for a back up but more and more insurance companies are going to the "will replace after 5 years only if it is not repairable".

Sounds like your replacement schedule is pretty typical. Most insurance will mimic the Medicare replacement schedule.
While it's a good idea to make use of the replacement allowance to have a spare of everything...most of those items don't need replacing that often. I have a heated hose with well over 10,000 hours on it. Went through 4 different S9 machines. It is now retired unless I go back to the S9.

Mask parts replacement...cushion and pillow life will vary among people. I get months and months and months out of a nasal pillow.
Someone else might do good to get one month.

Headgear is normally 6 months if going by what Medicare allows.
But a mask without headgear is covered after 3 months. Makes no sense to me...most masks need headgear.
Frames will last forever with common sense care as will the various short hoses that come with some nasal masks.

If you want to keep this...it's Medicare's schedule and most insurance will go by it.

I

Pugsy wrote:

FoggyBrain24 wrote:My understanding is that I can potentially use CPAP.com or another resource and my insurance would be billed?

CPAP.com does not bill insurance in lieu of payment. You pay full price up front and they will furnish you a universal claim form for you to turn in to your insurance company. As to whether or not your insurance will reimburse you for that purchase..that's up to your insurance company. Some won't cover it at all (Medicare is one of those) and some will allow it but cover it at a reduced "out of network" rate.

Interesting. I called my DME twice today to get some answers. They went through my insurance coverage (basically 50% of the machine, then 50% of all equipment provided it's commensurate with the equipment replacement schedule. They have asked me to meet with one of their personnel each time I have needed equipment, which has been a pain. I decided to order the AirFit P10 Nasal Pillow mask from CPAP.com. They have free shipping and return insurance. I can then test that for 30 days and see how it affects the leaks.

FoggyBrain24 wrote:I am curious, if someone drops this machine, what happens? Do you pay out of pocket?

You pay for it if your insurance says " so sorry you were clumsy"...you pay to either repair or buy another.

OK, well that means I have to be very careful

FoggyBrain24 wrote:Do most people get a 2nd device after 5 years and then they have a back up?

Again it depends on the insurance. It used to be quite commonplace for there to be an automatic replacement and then yes you keep it for a back up but more and more insurance companies are going to the "will replace after 5 years only if it is not repairable".

Sounds like your replacement schedule is pretty typical. Most insurance will mimic the Medicare replacement schedule.
While it's a good idea to make use of the replacement allowance to have a spare of everything...most of those items don't need replacing that often. I have a heated hose with well over 10,000 hours on it. Went through 4 different S9 machines. It is now retired unless I go back to the S9.

Mask parts replacement...cushion and pillow life will vary among people. I get months and months and months out of a nasal pillow.
Someone else might do good to get one month.

Headgear is normally 6 months if going by what Medicare allows.
But a mask without headgear is covered after 3 months. Makes no sense to me...most masks need headgear.
Frames will last forever with common sense care as will the various short hoses that come with some nasal masks.

If you want to keep this...it's Medicare's schedule and most insurance will go by it.

Thanks. This is all helpful. It means I am owed 50% of a new mask now so I will have to see (if I like the AirFit) how to deal directly with my DME. Thanks again!

https://imgur.com/a/uTG9u

Overall, another good night. Felt like I sleep pretty soundly. Been watching some TV in bed, so that's led to some longer sessions where I'm not necessarily assleep right away. Waking up feeling pretty good, seems like the brain fog is lifting and I'm able to get after it first thing in the AM (I tend to get to work within 45 minutes or so of waking up).

AHI went up a bit, but average leak / 90% leak rate went down. Pressure seems to be trending downward as well.

I emailed my sleep doc regarding the VS2 snores, will probably be a few days before I hear back from him.

Will hopefully received the nasal pillow mask in the next 1-2 days and then can do a comparison.

Looks pretty darn good and you are feeling better which is the main thing.

Thanks Pugsy. Consistency seems to be key.

https://imgur.com/a/uTG9u

Another evening that looks pretty good. I don't think I slept as well or as long, but I think that had more to do with a regular coffee given to me @ 2 pm when I requested decaf. I've been using some meditation apps to help me fall asleep but this week I've been looking at screens later than usual. I think I need to get back to cutting those off 30-60 minutes before I intend on falling asleep.

https://imgur.com/a/uTG9u

Last night was the first night trying out the nasal pillows. I tried my usual chin strap ace bandage wrap, but it came undone during the night. My mouth was dry when I woke up, so it's possible that I reverted back to mouth breathing. The leak % seems to indicate that may have happened.

The nasal pillows weren't as comfortable as the under the nose mask, but there wasn't much difference. Nasal pillows are definitely quieter and I would assume, if anything, there would be less leaks as I got used to it (and tamed mouth breathing).

I will probably try this out for a few more nights. I have the nasal pillows for 30 days with the ability to return.

Thanks.

If you were mouth breathing it sure wasn't very much. The time with the large leak flags...very brief and just barely into large leak territory. If you slept through them...I wouldn't worry much about those times.

First time with a nasal pillow mask...they do take a bit of getting used to after using the other mask types.
Takes getting used to in general plus getting the tension on the straps just right can also take a few nights.

For the first time with the nasal pillows...a quite decent report.

Thanks. I will definitely keep them going and let you know how it goes!