Returning To Therapy with Startling Results

[OldMarineOceanside]

In 2011 I had a home test that showed moderate to severe and got a new Philips CPAP. Sinus infections led to a switch and my insurance company authorized my DME (Crapia) to give me the same brand but APAP and I immediately found my way to the clinicians menu:-) I turned it WAY down and first night dropped to 0.5 to 3.5 for the next 2 months. Life was better though I HATED the full face masks and began to experiment.
  I sold my motorcycle to a man who by coincidence also had OSA and told me to try the Swift FX. I did and now life got REALLY good. No, GREAT to amazing. But after a coupe months a really bad thing became a severe thing and it was called sinus infections. Now a year prior to beginning PAP I had been through a sinus surgery for deviated septum and partial turbinate reduction. All went perfectly and PAP never seemed to cause me any problems like I had worried about. But switching to the nasal pillows and using the Russ Macmillan Ultimate Chin Strap to close my forever open mouth, I now began endless sinus infection, hearing loss and got so dizzy I couldn't walk or drive, was stuck in bed for weeks, literally. So my sinus surgeon placed tubes in both ears to allow draining and as luck would have it, I woke up 95% deaf and this time I STAYED this way and the infections now became serious enough to end up back in the hospital. Tubes were removed and it was about a month or 2 part of my hearing returned. Still, and thank God for the VA because the one thing they ever did to help me was give me a set of $6K hearing aids.
  But I was never to be able to tolerate Pap again so I sold all my gear and that was it. Till last week. My OSA is now SO bad my wife is terrified and unable to even watch anymore since a series of major surgeries, 5 in 4 months left me in a wheelchair for life and on major doses of Opioid medications for whatever life I have remaining. And today I just discovered (a bit late sadly) that these alone can often lead to Central Apneas and this is terrible news since without using insurance this time due to the serious nature and my wife and I BOTH afraid to even wait, she bought me a new  AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier and a lot of gear for it as well as the least intrusive full face mask I could find so we spent $1300.00 this time but it just got here yesterday since the online seller was unable to utilize the included 24 hour FedEx shipping due to the hurricane blocking all roads around them. THIS alone should have been a warning, an omen of what I would soon find. 
  So to my amazement, I survived the first night last night in a hundred degree heat wave in bed with mask on for 8 hours (but only 4.08 hours of DEEP sleep according to Garmin) and to my horror this machine shows mostly all were Centrals. It showed:
 
7:54 usage hours
70
Good mask seal
20
10.6 events per hour
3
7 mask on/off
0
Total myAir score 93/100

...Worse I went back to bed today and just slept 3 more hours with the same mask and it went from bad to MUCH worse.

 
2:13 usage hours
22
Good mask seal
20
27.9 events per hour
0
1 mask on/off
5
Total myAir score
47/100
“Usage hours” shows the number of hours you used your machine on a particular night.

  So MY take and I am learning from scratch here since this type of software was never available to ME before if it ever even existed back when, but it would seem we bought the WRONG machine and there goes $900.00... And if so, for US, it's just too bad because that is just money we honestly did not have but the love of a wife who simply will NOT let me die and be done with it may have just been the most heartbreaking event of our almost 40 years together. I am guessing here that even a Bi-Pap wouldn't do the job and would likely require a $5K or more ASV machine? Neither is possible as we are spent out and my only hope, again based upon MY ignorance is, I wonder if I dare to try my old Swift FX Nasal mask,if my numbers may drastically improve? But then my fear NOT based upon ignorance, is the nasty sinus infections may come rushing back in?

  I guess I am assuming that if this machine shows overwhelming Centrals at the rate of 2.4 as OSA and all the rest as Centrals, the machine can NOT be wrong? We bought this just for this reason because I had told her I was afraid it was "different" this time and that it honestly feels like I AM dying and just scares Hell out of me. I have seen a LOT in War, a lot in peace but the kind of suffocating I have been through the past year is honestly just a terrifying experience and so much so, I was willing to spend this much that we just could not afford to find out, once and for all. Guess I just told myself it couldn't happen to ME? 

  So wonder if those of you who do have the experience can tell me just how much trouble I might be in? One night in hundred degree weather in a full face mask may not be the best place to make an assumption? But me thinks that old handwriting IS up on that old wall....

[Sleeprider]

Complex apnea with both obstructive and central apnea is more common than you probably think, and it's likely you actually failed your first CPAP attempt for the same reason. A couple things you might try. Sounds like you used Supplier #1. They are a pretty decent supplier, and you might ask if they offer a return based on your inability to use CPAP. You are going to need a prescription for ASV, and the easiest way to get that is to show your results from Resscan to your primary care doctor. Unless you're looking for insurance, just explain your need for an Rx, not a referral to a specialist. Then Supplier #2 will sell you a Resmed S9 VPAP Adapt for about $1450, or the Aircurve 10 ASV for about $2K. You will have to call or look on that site for current quotes.

If you qualify for VA benefits or Medicare, then you will need to follow through with specialists, more clinical studies and a lot of other crap.

We can try to get your setting to where they minimize obstructive events and minimize centrals, but if you need ASV, it is never going to be ideal, it will probably better than what you're doing now. You will need to share some charts and treatment details. We can do our best to help, and I'm sure you didn't write your story above because you want to quit. Let's give it a shot.

[Walla Walla]

As a retired sailor I salute you! You might try the VA. They may be able to help you. Also give the Navy Relief a call. They also should be able to help. Good luck to you!

[OpalRose]

Sorry to hear of all you have been through.

On your first sleep period, an AHI of 10.6 is not all that bad, and yes, you may be on the wrong machine if most are centrals, but we would have a difficult time advising without seeing some statistics.  

First, be sure your machine has an SD card in it.

You list #SleepyHead in your profile, download the data from the SD card to SleepyHead and then use the tutorials in my signature line to post a screenshot of the daily page here.

It could be just a slight tweaking of your pressure range to get you at better numbers, plus we would need to see how much of your AHI numbers are actually Clear Airways.

For now, until you can post a screenshot, if you are using EPR on your machine, turn it off.

[OldMarineOceanside]

I will share my damned DIARY if it would help. My poor wife...taking a week off for her birthday and I had to just show her what I've gotten us into with this machine and nowwe are beginning our 3rd fight in almost 40 years. We chose this very machine after reading it had the ability to TELL me if I had anythiong other than OSA. I was terrified to spend the money in case I was once again unable to tolerate it. But we both agreed we knew of no other way to KNOW what was best without seeing and after insurance has nearly killed me and HAS put me in a bed & wheelchair only now for what time I have remaining I want NO more to do with insurance. Rather just die in this bed.

To Apple Rose-Yes I DID change it to use the EPR and I set it to 3 for maximum releif. I just turned it OFF as you suggested. Can you tell me why I should have I found it MUCH easier to exhale on setting 3????

Let me figure out how to post the tiny bit of data from last night and todays nap in a few...Be back in a bit-have to find that card!

[OldMarineOceanside]

I had to download some program it seems I will need to purchase to get the PDF size down enough to upload here? Maybe this will work to show my brief use of the new machine.  I will TRY to attach the downsized PDF but sure wish there was an easier way to show my results from SleepyHead?
See attachment & let me know if there is a better or best way so I can help you to help ME?
Well the smallest I can make a PDF is 320KB and I am only allowed 200 so I am lost again?

[Crimson Nape]

After 4 posts you will be able to post a link, until then you can break the url by adding a space somewhere in the address.  Instructions on what information from SleepyHead to post, how to use imgur, and how to post images here,  can be found at the bottom of this post.

[OldMarineOceanside]

After 4 posts you will be able to post a link, until then you can break the url by adding a space somewhere in the address.  Instructions on what information from SleepyHead to post, how to use imgur, and how to post images here,  can be found at the bottom of this post.

Thank you and I missed when Rose clued me and just no excuse. Will have to be tomorrow, wife is is tears and I have to go figure some way to "fix" the unfixable.

[Mogy]

Hi OldMarineOceanside,
Using the data that you get from your machine for the first few weeks can be miss-leading. My first week on APAP was very worrying for me. I had one night with an AHI of 36, and others of 27 and 22. Virtually all we're clear airways. I also had some periodic breathing which Sleepyhead labeled as Cheyenne Stokes. My sleep test said I had moderate OA(20) with a small Central element(0.7)
I found this very worrying and confusing.
My sleep therapist said that the centrals would settle down if I gave it time. She had seen about 12 cases similar to mine, and the centrals always reduced if you kept using the machine. And that is what happened with me. After a month, the centrals were cut to about 1/4 of what I had the first week. I have been using my machine for 7 months now and my average Central component is under 1.
Hope this helps.

[OldMarineOceanside]

Hi OldMarineOceanside,
Using the data that you get from your machine for the first few weeks can be miss-leading. My first week on APAP was very worrying for me. I had one night with an AHI of 36, and others of 27 and 22. Virtually all we're clear airways. I also had some periodic breathing which Sleepyhead labeled as Cheyenne Stokes. My sleep test said I had moderate OA(20) with a small Central element(0.7)
I found this very worrying and confusing.
My sleep therapist said that the centrals would settle down if I gave it time. She had seen about 12 cases similar to mine, and the centrals always reduced if you kept using the machine. And that is what happened with me. After a month, the centrals were cut to about 1/4 of what I had the first week. I have been using my machine for 7 months now and my average Central component is under 1.
Hope this helps.

Mogy-THANK you for encouragement and I would not quit under ANY circumstances as long of course, as the endless ear & sinus infections are not an issue again. With my setting I put into it (6 to 13) I would think, well if using ONLY the full face mask anyway, that I might be just fine. And my wife & I BOTH, sd crazy as it sounds, were willing to gamble this much on the risk I might NOT be able to tolerate it due to sinus? But my condition had become so severe, we had to do ANYTHING, but not just sit back and watch me die. Had enough of that with the 6 spine fusions, a large grapefruit size tumor that wrapped itself around the base of my spine removal, a FULL Mastectomy (and yes I AM a man-yeah, I was shocked too), then 6 weeks of hard to describe chemo and 2 more emergency surgeries to close up 2 large Seromas the size of footballs that filled that huge hole where my spinal tumor used to be. Yeah, fun times...