Help -- Mask leaks cripple my AutoSv

Folks I was first diagnosed with Sleep Apnea in 2003.

Over the last 7 years I have had 7 sleep studies, seen 6 different sleep doctors, I used 6 different machines, including CPAP, BiPAP, BiFLEX and
AutoSV’s.

I also had the UPPP surgery early on in 2004, it made things worse.

In Oct 2009 I went in for Nasal Surgery, turbinate reduction and to fix a deviated septum. This help a bit.

Over the years, I have had over 20 sleep studies. In the early years the sleep study finding have flipped from OSA to Mixed and all CSA.

For the past 3 years, all the sleep studies have shown non obstructive sleep disorder .. something they have been calling complex sleep Apena Syndrome.

The problem is that I never found a mask that fits my face. I used to be able to use a Quattro, but I had to tighten so much that I was getting blisters around the head piese.

Curently, my doc has me on the newest Respronics AutoSV with a quattro fx. Eevry time I use it there is a mask issue, the alarm goes off, my eyes dry out, and pain.
I have a lot of other chronic pain ... I just can't take it anymore, so I don't. I stopped using it.


It worse when I use the machine, when I keep the leakly mask on all night, I wake up and feel much worse ! I feel like I was in a Bar fight.

As each year goes by I get more tired, I am so tired .. I will do anything that works.

My Sleep Doc will not entertain any other treatment,.

Any Ideas folks ? I will read and acknolgedge all ideas.

Thanks

-Fred

Hi Fred,

I am so sorry to read your story. While mine isn't nearly as extensive as yours, I have been greatly struggling for several months and like you, finding the right mask has been one of my main problem.

I definitely hear you about being so tired and wanting to do anything that works. Heck, if someone told me that eating a diet of seaweed would enable me to prevent mask leaks, I would try it.

Anyway, thanks to a good friend, I have been trying a sleep weaver elan cloth mask and seemed to do somewhat better with that than full face masks in spite of my nasal issues. I had minimal leaks but I am at medium pressures and am not sure how well that would work on an ASV machine. But you have nothing to lose by trying it in my opinion.

It might help to list your history with masks and exactly what you have tried so people can better direct their advice.

Also, regarding leaks, many people have tried mask liners. Have you given that a shot?

Regarding your machine, I don't know anything about ASV ones but I am wondering if there is a way to turn off your alarm so it doesn't keep going off. Boy if that happened to me, I would want to throw it out the window.

And what you have tried for pain because that could also be impacting your sleep?

What is so frustrating when you struggle so much is there are a million reasons why and trying to find the solution is like finding a needle in a haystack. And then it is even more fun when we're so tired from lack of quality sleep.

Hang in there.

49er

fstellab wrote:Folks I was first diagnosed with Sleep Apnea in 2003.

Over the last 7 years I have had 7 sleep studies, seen 6 different sleep doctors, I used 6 different machines, including CPAP, BiPAP, BiFLEX and
AutoSV’s.

I also had the UPPP surgery early on in 2004, it made things worse.

In Oct 2009 I went in for Nasal Surgery, turbinate reduction and to fix a deviated septum. This help a bit.

Over the years, I have had over 20 sleep studies. In the early years the sleep study finding have flipped from OSA to Mixed and all CSA.

For the past 3 years, all the sleep studies have shown non obstructive sleep disorder .. something they have been calling complex sleep Apena Syndrome.

The problem is that I never found a mask that fits my face. I used to be able to use a Quattro, but I had to tighten so much that I was getting blisters around the head piese.

Curently, my doc has me on the newest Respronics AutoSV with a quattro fx. Eevry time I use it there is a mask issue, the alarm goes off, my eyes dry out, and pain.
I have a lot of other chronic pain ... I just can't take it anymore, so I don't. I stopped using it.


It worse when I use the machine, when I keep the leakly mask on all night, I wake up and feel much worse ! I feel like I was in a Bar fight.

As each year goes by I get more tired, I am so tired .. I will do anything that works.

My Sleep Doc will not entertain any other treatment,.

Any Ideas folks ? I will read and acknolgedge all ideas.

Thanks

-Fred

I can really empathise with the multiple studies, docs, machines, and masks.

I have found the F&P Simplus FF mask to work really well with my ASV. Maybe worth a try?

Hi Fred:

You can turn the leak alarm off on your machine - so that would be a good idea.
If you switch to an oral mask like mine, you can achieve zero leaks.
If you follow the link at the bottom of this post, you can determine if you can use this type of mask - some folks are uncomfortable with an oral mask but it can be made to work.

If you post your masks, others on this forum may be able to give you mask fitting advice for those.

Best wishes,
Merry Christmas