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Where Do I go From here? - Printable Version

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Where Do I go From here? - Howie51 - 12-21-2018

Rather unexpectedly my AHI dropped for a few days this week, after struggles to remain below 5. 

Juggling pressures and EPR I seem to have (finally) determined a base range of numbers giving consistent results (Sleepyhead calls this "Reasonably Good".) At the moment, it's exasperating to believe I might be able to lower the numbers even more - which leads me to question whether indeed I'm using the correct machine. I cannot call the quality of my sleep "good" by any stretch of the imagination, and while using CPAP is better than risking stroke or heart attack it is a long measure off from any degree of long-term comfort in my case. The frequent arousals are irritating. I'm also trying to be more consistent in using decongestants as I have sinus issues.

I've investigated specialized pillows, taping my mouth and taking every precaution I can think of, in addition to investing in different masks, the latest being the Airfit N20 which marks an improvement over my previous choices but which also is proving to be problematic in terms of irritation. *Deep sigh*.

Given I've reached the "end of my own tether" is anyone prepared to offer any advice respecting a possible way to improve my results even further, or, in fact, whether a different machine might be in my future.

Cheers and happy holidays to all the wonderful people at Apnea Board Forum

Howie


RE: Where Do I go From here? - Howie51 - 12-21-2018

One more chart ...


RE: Where Do I go From here? - Walla Walla - 12-21-2018

Have you tried reducing your EPR to 1cm? It might help clear up the CA events.


RE: Where Do I go From here? - Gideon - 12-21-2018

Looking up your history.  This day looks pretty good.  How do you feel?  That is much more important than numbers.
I'm guessing that you have a good amount of CA events.  If so it will likely be consistently inconsistent. Your numbers are such that on that basis you do not "qualify" for another type of machine.

Fred


RE: Where Do I go From here? - Gideon - 12-21-2018

I see from your history that you have, IMHO, mild to moderate Complex/Mixed Apnea that you have managed with consistent low pressure.  With this approach, we are trying to make you more comfortable so you can easily sleep soundly thru the night with a minimum number of apneas.  The key to this approach is How do you feel?  Your numbers say you are being adequately treated.  But numbers are less than half the issue, what is bothering you with your therapy?  What issues are you having?

Here is a list to think about
  • Daytime hypersomnolence;
  • Excessive fatigue;
  • Morning headache;
  • Cognitive dysfunction;
  • Dyspnea, etc.;
  • Fatigue;
  • Insomnia;
  • Difficulty going to sleep;
  • Difficulty falling asleep;
  • Wakening during the night;
  • Daytime Sleepiness;
  • Excessive Daytime Sleepiness (EDS);
  • Poor concentration;
  • Difficulty with balance;
  • Shortness of breath;
  • Dry mouth;
  • Restless Sleep;
  • Non-Restorative Sleep;
  • Snoring;
  • Obstructive Sleep Apnea;
  • Restless Leg Syndrome;
  • Nocturnal Leg Cramps;



RE: Where Do I go From here? - Howie51 - 12-21-2018

Hi Walla,

Near as I can recall, yes, I have tried it at #1.

Cheers & thanks for the input!


RE: Where Do I go From here? - Howie51 - 12-21-2018

Bonjour:

Thank you for the list.

I would select from it, an occasional mild morning headache, wakening during the night, dry mouth and sore throat, and restless sleep.

Although this is subjective, I don't feel well rested and fresh. I eagerly look forward to removing the mask in the morning and sometimes relinquish it prematurely during the night. I really have to "talk myself into keeping the mask on". Once in a while, I can escape having to use the tape, but most often it's necessary to avoid air escaping from my mouth, no matter where I place my tongue, or what method I try.  It looks to me like I will be eternally stuck with tape. One or two nights a month, I abandon the mask altogether JUST to get a break, even though I suffer from headaches next day. I have to remind myself just how BAD it is to NOT use CPAP.

If this makes any sense, I dread the nighttime and having to sleep with this system even though I know full well what the alternatives are. I have tried a full mask but found it unacceptable due to frequent leaks. Also tried nasal pillows but for me personally they are more disruptive than the nasal. I've fiddled with the humidity to no avail ... we have 43% RH in this house, so anything more and 1 on the dial causes water collecting in the mask. 


Thanks for your concern and assistance.

Howie


RE: Where Do I go From here? - Sleeprider - 12-21-2018

Your chart does not include flow limitations, but it's obvious that they are chronic and control your pressure on the Autoset. Back when you first joined, I suggested your issues were mostly central, and we reduced maximum pressure. A lot of progress has been made in improving events, but you still don't feel well and that is the goal. To me, your story resembles Spy Car Bill's most excellent adventure, who similarly experienced mixed events and inconsistent results. He managed to get ASV approved and called it a life changer. His story is worth reading, although it will take some time...it didn't happen over-night. http://www.apneaboard.com/forums/User-Spy-Car

It takes a while, but its is a good read to learn how he navigated the system with an event rate similar to yours, and manged to get insurance coverage for ASV. If you're willing to self-finance, there are machines out there that can be a good deal, but they are scarce.


RE: Where Do I go From here? - Sleepster - 12-21-2018

(12-21-2018, 01:02 PM)Howie51 Wrote: I cannot call the quality of my sleep "good" by any stretch of the imagination, and while using CPAP is better than risking stroke or heart attack it is a long measure off from any degree of long-term comfort in my case. The frequent arousals are irritating.

The fragmented sleep was irritating to me, too. It took a couple of years for it to fade away. This may sound like a long time, but my body learned to do this during who knows how many decades of untreated sleep apnea. It just takes it a while to adapt to the new circumstances and to realize that waking to breathe is no longer necessary. Things keep getting better as you adapt, it's a process not an event.

I noticed your hours of use. Around six per night? Are you sleeping without the machine or is that the total amount of sleep you're getting each night? If you are sleeping without the machine you are not able to adapt as well and you will likely continue to have fragmented sleep. If every time you sleep you use the machine, even for short naps, you will eventually adapt. It just takes some of us longer than others.


RE: Where Do I go From here? - Howie51 - 12-21-2018

Thus far I'm self-financed anyway. Retired and away from the company benefits once enjoyed! I had planned to purchase a backup machine, so the ASV route might be next. I did appreciate the positive feedback and do agree that change won't come easy .. probably innocently assumed that 8 months of trying ought to have been at the point where life gets better. 

I'll plug away for now and post again in a few months to check in with you great folks! Please have an enjoyable Christmas one and all!

Cheers
Howie