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Cannot tolerate silicone - rosacea
#11
RE: Cannot tolerate silicone - rosacea
Thank you hockenberry. Yes I've tried constructing my own barriers... using different tapes (plastic and masking tapes) and also a couple of layers of cotton from a cut up t-shirt. I got less of a reaction with the barriers in place but there was/is still a reaction.

Just yesterday I heard from another user about pad a cheek... immediately ordered a couple of liners from them! Hopefully they won't take too long in getting delivered to Aus.
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#12
RE: Cannot tolerate silicone - rosacea
I believe I also saw P10 liners on Padacheek. That could be a good way to be exposed to as little silicone as possible.

My Padacheek shipment arrived very quickly. She must ship right away; in which case, it'll just depend on how long it takes for US mail to get to you.
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#13
RE: Cannot tolerate silicone - rosacea
(03-17-2017, 09:57 AM)ihatesleepapnea2017 Wrote: ........Tried using SleepWeaver non-silicone cloth based mask but it won't work with the auto adjusting feature of my CPAP machine. The machine will not adjust properly when using this mask as confirmed by data viewed in SleepyHead.

Need advice from where to go from here. Particularly hoping to hear from someone with the rosacea/CPAP combination that I have.

I do not understand your statement that the cloth based mask does not work with the auto adjusting feature of your machine. Looking at your Sleepyhead report and sure enough your max pressure went down to an average of 8.7 during February, but your AHI did not increase. Actually the average AHI for February was a little lower than the other months.

You got good results so how can you say that your auto machine does not work with the cloth mask. Your data says just the opposite. As far as I can see, you are flogging a dead horse. The Sleepweaver fabric mask gives you good results. When you get good results at a lower pressure, I do not see there being a need to increase the min. pressure. Most people that I know of would be happy to decrease their operating pressures if they would still get good results.

Best Regards,

PaytonA

Admin Note:
PaytonA passed away in September 2017
Click HERE to read his Memorial Thread

~ Rest in Peace ~
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#14
RE: Cannot tolerate silicone - rosacea
thank you paton for informing me "I'm flogging a dead horse".

I assure you I am not on this forum complaining just for the sake of it. I came here because I needed help and advice.

As I have explained in previous postings the data I posted is misleading - from February on I was manually adjusting the machine settings on a regular basis.

I also don't trust the machines readings re AHI after February because I had a return of symptoms (ie. waking up multiple times, not feeling refreshed and also extreme day time sleepiness).

So from July to Dec pre-sleepweaver I was 100% symptom free and from Feb until now since I started using sleepweaver I have been symptomatic. The only thing that changed was the mask.

Another user had suggested that I turn off EPR when using sleepweaver and I have now done that and it does seem to be making a difference - I have slept better the past two nights since it has been off.

PS. what is the reason of your defensiveness of this mask? are you affiliated with the manufacturer. For your information I have had massive struggles with this mask but I have been persevering with it for months now because I believe I can get it to work unlike many others who gave up on it and posted negative reviews about it. I am not trying to be negative about the mask but clearly it is different to a typical silicone mask and it looks like some setting adjustments are needed to get it working nicely (eg. turning off EPR).
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#15
RE: Cannot tolerate silicone - rosacea
Interesting. I am happy that you have gotten some improvement.

Admin Note:
PaytonA passed away in September 2017
Click HERE to read his Memorial Thread

~ Rest in Peace ~
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#16
RE: Cannot tolerate silicone - rosacea
Maybe try one of the other Sleepweavers.  Any reason for the full face mask?  The Anew seems to kind of get mixed reviews.

I use the Sleepweaver Advance nasal mask.  Have rosacea too.

Though the FAQ on the company's website doesn't indicate any minimum pressures, I've heard some say the Advance doesn't work very well at lower pressures, below 9 or something.  This may also be the case with the Anew.  Anyway, maybe the auto PAP, or the range of your auto PAP (which seems kind of large), is part of the problem? I use straight CPAP and sleep quite well. Why not give that a try?  Or a narrower APAP range?  Not sure what the appeal of APAP is, actually, unless perhaps if you've got to use seriously higher pressures. I had an awful time in the sleep study, largely because they used APAP. But with constant pressure, I sleep great and don't get woken up by a sudden increase in pressure when an apnea event starts.  

If you do ever try the Advance (or Elan), just make sure the size is right. I struggled with mine for some time before going down one size. Using the small, I have zero problems.  Check the mask sizing chart on their website.

By the way, folks here are pretty helpful and generally don't have any nefarious commercial motives.

Good luck.

Edited:

ps - after posting, looked at your pics and other posts. I guess a narrower APAP range setting probably wouldn't do much anyway given your actual range.  Sorry.   Also saw you've got the Elan too.   Not sure how to help!
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#17
RE: Cannot tolerate silicone - rosacea
Hello - I have bad rosacea now, on my cheeks, just outside where the mask sits. I use the Amara View Mask. I can’t be sure the silicone mask is causing it because the rosacea is not under the mask, just up to the edge of the mask.

I used a nasal mask for years without rosacea flaring up. The last time I saw the the derm the rosacea was flaring around the sides of my mouth and on my chin. The dermatologist prescribed metro gel, a generic, for me and that brought it under control and wasn’t costly. In the past the doc has prescribed Financea for rosacea. It worked fine too. I don’t know if it has a generic, but I seem to recall the doc gave me a coupon which brought the price somewhat.

I have tried the liners in the past for leaks but I couldn’t get the hang of them and I’m not using them now. I can only used the metro during the day because I want my face striped of all oils, creams, whatever, at night (for leaks). 

Hope this helps.
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#18
RE: Cannot tolerate silicone - rosacea
Thanks Fabby.

I have had my rosacea treated a couple of times with Excel V laser and had really excellent results with that. I am hoping to get another treatment with that soon. It takes multiple treatments to get awesome results but you will see major differences even from just a single treatment. It just blasts away the redness. Would highly recommend you check it out.

In my case the silicone masks affect my cheek, chin and nose. The nose is the worst affected since it caused extra skin growth there.

I have noticed multiple postings where people complain about the impact of the masks on their rosacea. Then there are others who describe what the mask does to their faces - and it sounds really similar to me - they probably have rosacea and don't even realise it and the silicone causes it flare right up.

The worst part is when a ton of people not affected jump into the threads insisting silicone is completely inert/cannot possibly cause skin issues. Well let me tell you I don't know if it's the silicone but there is SOME ingredient in the masks that DOES cause horrendous skin damage in people with a certain skin type. Clearly most people aren't affected by it but there's enough threads about it to suggest a sizable number of people are.

For now I am going to be sticking with the sleepweaver anew, which is working somewhat better for me after I took the advice of another post in this forum and changed a particular setting.

The sleepweaver does not cause permanent skin damage like the other masks... the worst part about the sleepweaver after you manage to control the leaks (which I mostly have but it took a lot of practice and persistence) is a design flaw in which a hard piece of fabric is jammed up underneath the bottom of the nose in between the two nostrils - it does cause the skin to break there at times and is a bit painful - but that is not permanent.
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