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[CPAP] My Sleep Apnea Story and CPAP Issue
#1
Sad 
Hi all and thank you in advance for any suggestions and help you can give me.

Here is a summary of my situation. There are cliff notes at the bottom for anyone not wanting to read entire long post.

I am a 32 year old male living in Melbourne, Australia. I am healthy/normal weight and besides sleep apnea I have no major medical complications or illnesses that I know of.


In April/May 2016 I started experiencing extreme day time fatigue. By 3pm in the afternoon I could no longer keep my eyes open - it was painful to do so - I had to take minimum 30 mins nap in order to keep going. In addition I was a back sleeper at the time and I noticed it felt like I was choking as I was drifting off to sleep at which point I would immediately snap back awake and the process would repeat.

After some research online I learned about sleep apnea and the symptoms and decided there was a good chance I had it. I explained this to my GP who almost rejected the idea outright based on my age and healthy weight status however reluctantly agreed to refer me to a sleep centre for a sleep study.

Of course the sleep study came back confirming my suspicions - moderate obstructive sleep apnea 18/hr.

By this stage I was well aware of the mainstream treatment options and knew I would likely be offered CPAP in the first instance - I was so eager to get started on therapy I asked the sleep centre to have a CPAP machine ready for me the same day I got the results. It was simply intolerable to keep going without treatment.

I purchased a ResMed AirSense 10 Autoset with a resmed full face mask and the sleep therapist inputted the settings with 6-20 pressure being the main one.

I knew from the very first night that it was working. I was basically 100% compliant from the very first night, no issues with leaks etc. After a week I felt like I was fully recovered, the symptoms I had previously suffered were completely gone. The readings on the machine were telling me that my AHI was under 1/hr!!!!

From July 2016 to Dec 2016 I continued to be 100% compliant with my CPAP therapy and I was 100% symptom free when it came to sleep apnea.

However in December 2016 I started to notice that my facial skin was becoming increasingly red with many noticeable burst blood vessels particularly in the areas where the CPAP mask touches the face (ie. nose, cheeks and chin). I had at first thought this redness was a temporary after just waking up but as I paid more intention I noticed it was actually permanent and it seemed to be getting worse!!!

First thought was that it might be the washing detergent/soap getting absorbed by the silicone and causing irritation to my skin so I immediately went out and bought a 100% brand new ResMed mask as well as Johnson's Baby Shampoo to clean it. The redness continued to worsen and my skin was starting to get pimply and bumpy!!!

Next attempt was to try a different brand of mask so I borrowed a Phillips branded gel mask from a CPAP retailer.... The redness continued to worsen each and every night I wore the mask.

Next try was to go back to ResMed mask but use it with disposable cloth liners. This helped a little bit but the liners somehow don't seem to provide a strong enough barrier - the redness and pimples and bumps continued to grow.

Attempt number four to deal with this problem was to try a nasal pillow mask since there would be minimal skin contact - not only did this cause me to experience the sorest sore throat in my life but the small areas underneath the nostrils where the silicone pillows touch the skin were now glowing bright red and pimply!!!

Off I went to see a dermatologist who gave me the bad news I had rosacea, which was obviously severely inflamed by the silicone mask... A couple of expensive laser treatments later I was able to somewhat reduce the redness and pimples/bumps in my face.

Ok so by this stage I am at a complete loss about what to do and no longer using my CPAP machine. I was a mental and physical wreck. I keep searching online and read about the SleepWeaver range of CPAP masks that are non-silicone, cloth based. Obviously I immediately start tracking down a SleepWeaver.

I finally got hold of a SleepWeaver Anew full faced cloth mask (I also got myself a SleepWeaver Elan nasal mask just in case). Both masks seemed to have large leaks at the sides of the nose, which blow straight into your eyes, that initially caused me to give up using them... The good part about these masks though was no more red skin!!!

After a couple of weeks of no CPAP I was once again desperate and decided to give one more shot to SleepWeaver full faced mask. To deal with the nose leaks and the air in the eyes problem I got myself an eye mask that people to use to block out the light when they sleep in the day. It worked 90%!!!! By using the eye mask as well as the SleepWeaver there was basically no more leak and no more air blowing into my eyes. This was confirmed by the CPAP machine itself which was showing minor leakage (no greater leak than the ResMed mask itself).

Ok so now I am back to 100% CPAP compliant using the SleepWeaver mask. Unfortunately after a few weeks of this my symptoms of sleep apnea return. I am waking up NOT refreshed and by the mid afternoon I am tired, irritated and not thinking straight. The weird part about this is the CPAP machine is showing a good mask seal and a very healthy API of around 1/hr!!!!!

I assumed it must be the machine playing up and immediately took it in for service/inspection. I was provided with a replacement (identical brand/model) machine to use in the meantime.

After 1 or 2 nights using the replacement machine it was clear I was not getting any better. So now I knew it wasn't the machine that was broken at all. Something else was wrong.

At this point I decided to start playing around with the pressure settings on the machine. I changed it to minimum 9, 10, 11, 12 and even 14 at one stage. I felt a little bit better around the 10/11 mark but still no where near as good as the first 6 months of CPAP with the ResMed silicone mask.

A few days I downloaded SleepyHead to try to work out what the hell is going on. This is what SleepHead tells me:

For the first 6 months of CPAP using the ResMed silicone mask I had average pressure of 7 with a maximum pressure of between 14-18. My AHI was below 1/hr for the entire 6 months and CA events were extremely rare.

After I changed to the SleepWeaver the average AND maximum pressure is whatever I set it to and the AHI is around 3/hr with the bulk of those being CA events. For example, if I set the pressure to minimum 7 then the maximum it ever reaches for the entire night is 7.5. It adjusts but barely and not enough.

From what I am understanding from the SleepyHead data the auto adjustable feature of the CPAP machine is not working properly with the SleepWeaver mask. 

Now I am in the situation that I cannot go back to the silicone based masks and I don't think I can continue using the non-silicone SleepWeaver masks either. Even though the machine is saying 3/hr events it doesn't seem accurate because I am back to experiencing symptoms - waking up to use toiler during night, not feeling refreshed and fatigued/tired during the day.

I can't be the only one in this situation. Need suggestions/advice what to do.

Cliffs:
1. OP is 32 years, normal weight, male, with moderate obstructive sleep apnea 18/hr.
2. OP is 100% CPAP compliant.
3. Silicone in CPAP masks causes severe skin reaction (rosacea) in OP in which blood vessels burst, the skin becomes red and there is skin growth and pimples.
4. OP has changed to non-silicone "SleepWeaver" cloth based mask.
5. Data shows ResMed AirSense 10 Autoset is not adjusting properly when the SleepWeaver Mask is used. 
6. OP is still 100% CPAP compliant with the SleepWeaver mask but symptoms persist such as excessive fatigue, waking up to urinate, and not feeling refreshed.
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#2
I feel sorry for you. what an ordeal!

How bad are the leaks? You won't get effective therapy with too much leakage and covering your eyes won't help. What are your average and 90% leak rates? How many large leak events do you have each night?

It would be good to post some sleepyhead data. See the links below in my signature.

Once you post some data the forum will be more able to help you.

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#3
I will try to figure out Imgur in the next few days so that I can post a screen shot.

However, I can tell you the leak is not the issue. It is usually around 1 or 2.
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#4
Looking over your list above.
#5 is puzzling?
5. Data shows ResMed AirSense 10 Autoset is not adjusting properly when the SleepWeaver Mask is used.

ihatesleepapnea2017,
What are you seeing in your data to make that determination?  The Apap will adjust and raise pressure if needed, unless you have alot of Clear Airways, then it will not raise pressure.

The Apap will also react to Snores and Flow Limitations and raise pressure to keep your airway open.

If there are alot of leaks throughout the night, or you are mouth breathing, then the AHI will be suspect.  

With prolonged leaks, the Apap "may" try to increase flow to maintain pressure, and may not be able to keep up.

Please take a screenshot so we can see what you are talking about.
OpalRose
Apnea Board Moderator
www.ApneaBoard.com

How to Organize and Post ScreenShots

http://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#5
Here is the data:

http://imgur.com/a/5nExr

http://imgur.com/a/6qHc9

Please note it is the data in the second image which shows the machine won't adjust with SleepWeaver. Here is what I mean:

From August 2016 to December 2016 I was using the ResMed mask - you can see the max pressure ranges from 14.40 (November) up to 18.90 (September).

In February 2017 when I am using SleepWeaver you can see the max pressure drops off to 8.70. It jumps back up in March but that's only because I manually changed the settings to boost the maximum, which is a disaster because I don't need that pressure most of the time and it is causing CA events!
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#6
It appears that everything is working correctly, and that you don't need the additional pressure you had back in September. You don't say what mask was in use back then. Your average pressure is nearly unchanged, it is only your 90% pressure that has gone down, and I can think of any number of reasons why that might occur as you further adapt to the therapy and especially change the mask interface. I think it's not well advised to force the higher pressure, when it's clear that your pressure needs simply have less variance than previously. Your average pressure is at 7.0 and that might be a good pressure to input as a minimum pressure, and just let the maximum wander to where it needs to be to a maximum of 18.
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#7
The data is not clear because I was manually changing the settings a lot the past month.

To explain the maximum pressure will never change unless I manually change it. That's the whole problem with the SleepWeaver.

For example if I set a minimum pressure of 7 with SleepWeaver the max pressure ***never*** goes above 8.

When I use the resmed mask the max pressure will go 14-18.
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#8
It is not unknown for people to develop CA while on obstructive therapy. A new sleep study would rule this out or confirm it.
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#9
Hi ihatesleepapnea2017,
WELCOME! to the forum.!
I’m sorry you are having such a rough time with your CPAP therapy. I hope you can find a mask that won’t give you skin problems.
Hang in there for more responses to your post and good luck to you.
trish6hundred
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