3500 Hours and Still Learning

I thought I had all the answers about my treatment, but I have learned we never have all the answers.

I was told a FF Mask was the surest way to treatment, especially if you have trouble breathing at night. So in the beginning the Devil DME, threw a ComfortFull "M", at me and said go forth and make it work. I did, for 3,000 hours. In my quest for a better solution, I bought a F & P 431, and it was good. Less leaks more comfort. I logged 500 hours on it. Then I started to get tired again, and wondered why, I noticed my AHI was higher with the 431, and my events had become more frequent and longer with my beloved 431, alas she had turned on me, like a fickle lover.

The night before last, was the last straw, reading my results, my readings were over 8 times worse than my ComfortFull, AHI was only 6.4, but I won't accept that, I can do better, my time in Apnea, was 243 seconds, I'm not going therough this, to stop breathing four minutes a night with treatment.

So I decided one more test, to try something I knew would fail, I, a Mouthbreather, would try a Nasal Mask, knowing it wouldn't work for me.

I had a Respironics 1009042 "M" (Maybe the "M" stands for Magic?), I hoped. I put it on and hosed up, I found I could breath with it on, and it sealed well. I also found I didn't have any trouble keeping the air from coming out of my mouth. (Except when I yawned), then it was like a Fog Horn. I still knew it wouldn't work, I had taken 3 kinds of decongestants, starting at 3 hours before bed, I do this every night, to breath, even though with heart problems, I am not supposed to use them. but I figure if you can't breath it might cause your heart to stop anyway.

I knew my trusty Remstar APAP, would watch over me, and in the morning would report on my sucess or failure. Eureka!, The test is over, Instead of running at 15.5 CM as the F&P 431 wants, or the 14 CM the ComfortFull wants most of the time, The New used Comfort Gel, hummed along at a 90% rate 0f 12.8, with the floor setting of 12.5, the leak rate was 3 LPM less than the last two month avg. Without taping, I have been trying to train my tongue to stay on the roof of my mouth, it may have helped.

Time will tell if I can keep this success, but it's a door I never though I could open, so for the time being we will continue this new way of sleeping, as long as the success keeps up. Now I reset the APAP to 11 CM to 15 CM, maybe less is more! Jim

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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, DME, AHI, APAP

Congrats Jim!!

I'm glad you found something better. I too have been surprised that I can use my tongue to keep air from escaping out of my mouth even when I open my mouth on purpose.

- roberto

Goofproof wrote:I thought I had all the answers about my treatment, but I have learned we never have all the answers.

That's because "someone" keeps changing the questions on the tests.

3500 hours, huh? I think I'm only only showing around 3200 in MyEncore (for 3 machines)......and that's been since May of '05......I think I need to catch up on some more sleep.

Anyway, congratulations on your successes and good luck on your "mask quest". Hopefully this one will be a winner.

Best wishes, Jim.

Den

Hi Jim-thanks for sharing your story. I have looked up to you for your sound advice and helping spirit. Keep up the great work! 3000 plus hours...Man!!! I officially give you a gold star for your forehead

Congrats Jim!!

You were the first person to reply to my first post on the forum back in June. I just hit 290 hours. Thanks to you and others on this forum I have had very few (minor) issues. Keep up the good work!

Brenda

Jim out of the full face mask crowd

I never saw that one coming!

Good luck Jim I hope you spend many a restful night with your nose hanging out in the open.

Congratulations, Jim.

Goofproof wrote:I had taken 3 kinds of decongestants, starting at 3 hours before bed, I do this every night, to breath, even though with heart problems, I am not supposed to use them. but I figure if you can't breath it might cause your heart to stop anyway.

If you ever want to get off the decongestants, I can recommend the Grossan nasal irrigator. I was amazed what it did for me. Like you, I never expected to be able to use a nasal interface either.

Regards,
Bill

No-one, was as surprised as I was, I thought, no way! However it goes, my Epoxied, hot met glued up, ComfortFull, will remain in the Drawer of Honor, Ready to jump in and save me when the lower swivel clips break off the Comfort Gel Mask.(And we know they will)

The wise thing would be to epoxy them before they break off. If they make it to the end of the month intact, I will do that. "No Mask Should Go Un-Modified.", That's our Slogan.

Thanks one and all for your joint support, and study stream of ideas, this place is a vast resource of help and ideas. Jim

Goofproof wrote:(snip)
"No Mask Should Go Un-Modified.", That's our Slogan.

(snip)

But, should it be? It really seems to me that for the price, the masks and their machines should be designed better. Further, more compact and simpler designs would be very much appreciated.

That said, maybe we should have a contest to see who has the MOST adaptations to their mask/interface and/or machines?

Jim,
I wonder what us Hybrid folks are considered? "Full face" wannabe's? Or maybe its nasal pillows club?

I had thought I wasn't a "wide open" mouth breather, but the past few weeks I have woke up on several occasions trap wide open and humidifier almost empty. I guess no amount of willful training will help me once I'm asleep.

Very happy for you JIm! You have traveled down a long hard road and happy your new machine is working good too.

Suzy

birdshell wrote:

Goofproof wrote:(snip)
"No Mask Should Go Un-Modified.", That's our Slogan.

(snip)

But, should it be? It really seems to me that for the price, the masks and their machines should be designed better. Further, more compact and simpler designs would be very much appreciated.

That said, maybe we should have a contest to see who has the MOST adaptations to their mask/interface and/or machines?

Respironics has known about the problem for years, all their masks that use the ball socket, break the ears off, they furnish and sell the ball fasteners , but that's never what breaks.

I think it's a case of that chewing gum ad they are runn on T.V. They make the gum with lots of long lasting flavor, and no-one has to buy more gum...

What we've got is a company making a known weak product, so they can sell more weak product. I guess if you own a company, it's better to be #1 for sales, than to be #1 for quality. Then a company comes along with the Hybrid, and you wonder what that sucking sound is as your users jump to a new product. Jim

The required fix would be less that 1/4 oz of Medical grade plastic $00.01 per mask.

Goofproof wrote:I thought I had all the answers about my treatment, but I have learned we never have all the answers.

I was told a FF Mask was the surest way to treatment, especially if you have trouble breathing at night. So in the beginning the Devil DME, threw a ComfortFull "M", at me and said go forth and make it work. I did, for 3,000 hours. In my quest for a better solution, I bought a F & P 431, and it was good. Less leaks more comfort. I logged 500 hours on it. Then I started to get tired again, and wondered why, I noticed my AHI was higher with the 431, and my events had become more frequent and longer with my beloved 431, alas she had turned on me, like a fickle lover.

The night before last, was the last straw, reading my results, my readings were over 8 times worse than my ComfortFull, AHI was only 6.4, but I won't accept that, I can do better, my time in Apnea, was 243 seconds, I'm not going therough this, to stop breathing four minutes a night with treatment.

So I decided one more test, to try something I knew would fail, I, a Mouthbreather, would try a Nasal Mask, knowing it wouldn't work for me.

I had a Respironics 1009042 "M" (Maybe the "M" stands for Magic?), I hoped. I put it on and hosed up, I found I could breath with it on, and it sealed well. I also found I didn't have any trouble keeping the air from coming out of my mouth. (Except when I yawned), then it was like a Fog Horn. I still knew it wouldn't work, I had taken 3 kinds of decongestants, starting at 3 hours before bed, I do this every night, to breath, even though with heart problems, I am not supposed to use them. but I figure if you can't breath it might cause your heart to stop anyway.

I knew my trusty Remstar APAP, would watch over me, and in the morning would report on my sucess or failure. Eureka!, The test is over, Instead of running at 15.5 CM as the F&P 431 wants, or the 14 CM the ComfortFull wants most of the time, The New used Comfort Gel, hummed along at a 90% rate 0f 12.8, with the floor setting of 12.5, the leak rate was 3 LPM less than the last two month avg. Without taping, I have been trying to train my tongue to stay on the roof of my mouth, it may have helped.

Time will tell if I can keep this success, but it's a door I never though I could open, so for the time being we will continue this new way of sleeping, as long as the success keeps up. Now I reset the APAP to 11 CM to 15 CM, maybe less is more! Jim

If you haven't tried those BreatheRight strips you really should, I wear a large one every night and it really helps me breathe though my nose (I already had the nasal surgeries to fix deviated septum).

I would also try the Netti pot or ear aspirator using the saline rinse, that really works and can keep you clear for days.

I use the UMFF, if I use a nasal mask it will congest me just from the pressure being so close to the nose. I'm going to try a Large cushion with the Activa, I went to a Large cushion on the UltraMirageII nasal and it was much better.

If you are concerned with the mouth breathing, turn on the Alarm feature, should you start to mouth breathe it will set off the alarm (just confirms you are or aren't).

Goofproof wrote:

birdshell wrote:

Goofproof wrote:(snip)
"No Mask Should Go Un-Modified.", That's our Slogan.

(snip)

But, should it be? It really seems to me that for the price, the masks and their machines should be designed better. Further, more compact and simpler designs would be very much appreciated.

That said, maybe we should have a contest to see who has the MOST adaptations to their mask/interface and/or machines?

Respironics has known about the problem for years, all their masks that use the ball socket, break the ears off, they furnish and sell the ball fasteners , but that's never what breaks.

I think it's a case of that chewing gum ad they are runn on T.V. They make the gum with lots of long lasting flavor, and no-one has to buy more gum...

What we've got is a company making a known weak product, so they can sell more weak product. I guess if you own a company, it's better to be #1 for sales, than to be #1 for quality. Then a company comes along with the Hybrid, and you wonder what that sucking sound is as your users jump to a new product. Jim

The required fix would be less that 1/4 oz of Medical grade plastic $00.01 per mask.

As usual, Jim, you have gotten right to the crux of the matter. What really, really irks me is that the medical industry is using shoddy design for gain. Consider the many, many noncompliant apneoics are out there who either paid for their machines or their insurance companies did, and maybe a big reason they ARE noncompliant is that the equipment is lacking in design and durability. Look at all of the fixes someone without computer skills is missing from this forum alone.

If I'd not had the advice of all the Forum Folk, who knows if I'd have finished the great mask/interface hunt yet? And you, Jim, are still going through the process of finding a usable mask--again. At least the older designs are still available, or at least some are. I could have been a Puritan-Bennett ADAM interface user. I would have had to fix the straps, but at least I could have figured something out.

Where are the ethics? A company doing the right things would actually, IMHO, be increasing its potential users/customers, building brand loyalty, and therefore making more money.

Is it any wonder that the medical costs are increasing geometrically (or at least it seems as if they are)?

I am still hunting for that Creature from Alien, If we could just get him fixed so he doesn't grow in the chest. At least he keeps the airway open. Jim

Hi Goofproof,

Thanks for your post. It is personal experiences posted that make this forum come alive. It not only helps newcomers seeking information but also helps others who have been on therapy keep up to speed.

So I see you have logged 3500 hours. Do you take your xPAP to work or do you just sleep all day? (just kidding!) I started APAP late Jan 05 and have 4396.8 hours logged, just checked, (note the .8, you gotta be exact in this business or the evil DME police will report you!) - and I do sleep some during the day lately.

One thing that prompted me to reply to your post was that you said you take three decongestants every night. I also had a very hard time breathing when I started APAP and took one decongestant to help breath. It really did work but the label said not to take it for more that a week. I've heard you can build up a resistance or have a serious rebound effect with over use.

Anyway, I also have heart issues (aortic valve replacement, pacemaker), and when I told my cardiologist I was on APAP she thought it was great. Then when I told her my long term sinus congestion really interfered with the APAP, she said get Flonase. My dentist also told me to do this.

Have been using Flonase for about 18 months now and it works fine for me, very little congestion and no problem at night breathing. You may want to do a web search on this (apparently doesn't work for all), but be sure to ask your cardiologist about this.

All the best.

Bob F