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Partial Success, Finally, need advice - zzzzk - 09-25-2012
Hello,
I finally have partial success with my apnea. Here's my story in short to hopefully help some people and also I could use some advice.
I was diagnosed with sleep apnea over 9 years ago. I could never use a nasal mask. I would always blow out my mouth one minute after falling asleep. I used a strap, did not work. Taped my mouth, did not work. I finally gave up after a few months. This is when I had insurance! They just gave me a cheap cpap and cheap mask and say, bye.
Finally, 8 years later! Someone gave me a full face mask. NO MORE BLOWING OUT MY MOUTH WAKING ME UP! My "doctor" never suggested a full face. Pathetic.
I also have to sleep on a wedge or my apnea pressure would probably be 25 or more! It helps me a lot, though it was difficult at first to get used to.
I bought a Respironics System One 550P RemStar Auto with A-Flex. I had it set on auto 4-20, my ahi was always between 15 and 25. I could not get my "clear airways" down. Many said, "don't worry about it" but I felt terrible so I don't agree with that. Someone suggested that "a-flex" made it worse for them, so I turned it off. My ahi dropped down to 6.3!!
Now for the questions. I bumped up my pressure all the way to a 14-16 range, but it will no longer go down due to OA's. I could raise it higher, but from the graphs in Sleepyhead, it seems that when I start to choke badly, no rise in pressure helps so I wake up.
I also seem to regularly be clogged up at times with mucous or maybe it's just my sinuses closing due to allergies. I use a neti pot and I use saline, but the same happens every night. I get more and more clogged up, slowly. The interesting thing is that in the early morning hours, it seems my sinuses dry up and I don't get as clogged up for some reason, this despite the fact that I'm using a humidifier. I also get dry throat at high pressures. Any advice on pressure settings and my sinuses clogging up, etc? I am happy that it's down to about 6.3, but I read that's not good enough.
So for the people discouraged, keep trying and don't blindly trust doctors! Also, for me, any advice? Thank you!
Average 90% Pressure
15.3
Average CPAP Pressure
14.6
Pressure (cmH2O)
Percent of Night in Periodic Breathing (PB)
Average % of Night in
Periodic Breathing
1.0%
Clear Airway Apnea Index (CA)
Average CA Index
1.2
Obstructed Airway Apnea Index (OA)
Average OA Index
3.9
Average Hypopnea
Index
1.2
Hypopnea And RERA Indices
Average RERA Index
1.2
Average AHI
6.3
Flow Limitation And Vibratory Snore Indices
Average VS Index
4.5
Average FL Index
0.0
Percent of Night in Large Leak (LL) Average % Night in
Large Leak
0.0%
Average Large Leak
0 secs.
RE: Partial Success, Finally, need advice - zonk - 09-25-2012
(09-25-2012, 03:49 PM)zzzzk Wrote: I also get dry throat at high pressures.Normally dry throat is associated with full face mask as you,re breathing thru your mouth which causes the dryness.
You can turn up the humidifier but really its not designed to hydrate the mouth. The other option is a nasal mask plus a chinstrap but you've tried already so the dry mouth is a trade off using full face mask which you find more comfortable
Have you tried Biotene mouth wash?
RE: Partial Success, Finally, need advice - PaulaO2 - 09-25-2012
What were your questions?
RE: Partial Success, Finally, need advice - zzzzk - 09-25-2012
(09-25-2012, 05:58 PM)zonk Wrote:FYI, forums have helped me a lot. Interesting, that means that at lower pressures I am probably not breathing through my mouth. What is Biotene? Thank you.(09-25-2012, 03:49 PM)zzzzk Wrote: I also get dry throat at high pressures.Normally dry throat is associated with full face mask as you,re breathing thru your mouth which causes the dryness.
You can turn up the humidifier but really its not designed to hydrate the mouth. The other option is a nasal mask plus a chinstrap but you've tried already so the dry mouth is a trade off using full face mask which you find more comfortable
Have you tried Biotene mouth wash?
RE: Partial Success, Finally, need advice - zzzzk - 09-25-2012
(09-25-2012, 06:01 PM)PaulaO2 Wrote: What were your questions?
More specifically:
1. Should I try a higher pressure than 14? Or would that not be useful because the graphs in Sleepyhead show I still wake up when it auto up's to 16. Or other suggestions?
2. Any ideas what I can do about my sinuses closing during the night that people have tried? I think it's allergy related.
3. Anything I can do about dry mouth even though I have a humidifier already? Thank you.
RE: Partial Success, Finally, need advice - zonk - 09-25-2012
(09-25-2012, 06:50 PM)zzzzk Wrote: What is Biotene? Thank you.Designed to help relieve oral dryness and the symptoms of mild to severe dry mouth.
RE: Partial Success, Finally, need advice - PaulaO2 - 09-25-2012
(09-25-2012, 06:53 PM)zzzzk Wrote:(09-25-2012, 06:01 PM)PaulaO2 Wrote: What were your questions?
More specifically:
1. Should I try a higher pressure than 14? Or would that not be useful because the graphs in Sleepyhead show I still wake up when it auto up's to 16. Or other suggestions?
What exactly is your machine currently set to? What is the bottom number and what is the maximum number? Your profile says 8 but your post said you have it at 14 and 16. You say you stopped using it 8 yrs ago but have recently restarted. That's great, by the way. Congrats! How long have you been using it this time?
The thing to making changes, even with an APAP, is to make the changes slowly. You want to see what the trends are. You can't go by what happens each night because far too many variables happen night to night. But a trend will show better averages and statistics.
Quote:2. Any ideas what I can do about my sinuses closing during the night that people have tried? I think it's allergy related.
If it is allergies, then you need to see an allergist. Explain that you use a CPAP and what your symptoms are. There may be a seasonal allergy med that will help. Don't let him/her blame it completely on your CPAP use.
How long have you had your current mask and hose? If it has been a while, you may want to change those out. With allergies, you need to keep them very clean. I had an issue a few years ago and after much trial and error, I found out it was the hose itself. Back then, the hoses were not as transparent as they are now (and it was not automatically replaced) and crap was growing in there. After changing the hose and mask, my symptoms went away. They have gotten much better at including the hose in the regular changing as well as making the inside smoother so crap can't grow.
I use simple Benedryl (diphenhydramine) and nasal rinses during my seasonal allergy fun. But, for me, using the CPAP helps rather than hinders. I am clear at night but as soon as I take the mask off in the morning, I clog up immediately. This can last from just a few minutes to much longer. If it lasts for more than half an hour, I use the nasal rinse or a decongestant. Nasal dryness can be helped by using Lanolin on the inside of the nostrils. It can be found in the baby aisle as it is most used by nursing mothers.
Quote:3. Anything I can do about dry mouth even though I have a humidifier already? Thank you.
Dry mouth and full face masks are good friends. The Biotene would help. Keeping a bottle of water to drink whenever you need it during the night may as well. You are getting the dry mouth because you breathe through it.
RE: Partial Success, Finally, need advice - zzzzk - 09-25-2012
(09-25-2012, 10:05 PM)PaulaO2 Wrote:(09-25-2012, 06:53 PM)zzzzk Wrote:(09-25-2012, 06:01 PM)PaulaO2 Wrote: What were your questions?
More specifically:
1. Should I try a higher pressure than 14? Or would that not be useful because the graphs in Sleepyhead show I still wake up when it auto up's to 16. Or other suggestions?
What exactly is your machine currently set to? What is the bottom number and what is the maximum number? Your profile says 8 but your post said you have it at 14 and 16. You say you stopped using it 8 yrs ago but have recently restarted. That's great, by the way. Congrats! How long have you been using it this time?
The thing to making changes, even with an APAP, is to make the changes slowly. You want to see what the trends are. You can't go by what happens each night because far too many variables happen night to night. But a trend will show better averages and statistics.
Quote:2. Any ideas what I can do about my sinuses closing during the night that people have tried? I think it's allergy related.
If it is allergies, then you need to see an allergist. Explain that you use a CPAP and what your symptoms are. There may be a seasonal allergy med that will help. Don't let him/her blame it completely on your CPAP use.
How long have you had your current mask and hose? If it has been a while, you may want to change those out. With allergies, you need to keep them very clean. I had an issue a few years ago and after much trial and error, I found out it was the hose itself. Back then, the hoses were not as transparent as they are now (and it was not automatically replaced) and crap was growing in there. After changing the hose and mask, my symptoms went away. They have gotten much better at including the hose in the regular changing as well as making the inside smoother so crap can't grow.
I use simple Benedryl (diphenhydramine) and nasal rinses during my seasonal allergy fun. But, for me, using the CPAP helps rather than hinders. I am clear at night but as soon as I take the mask off in the morning, I clog up immediately. This can last from just a few minutes to much longer. If it lasts for more than half an hour, I use the nasal rinse or a decongestant. Nasal dryness can be helped by using Lanolin on the inside of the nostrils. It can be found in the baby aisle as it is most used by nursing mothers.
Quote:3. Anything I can do about dry mouth even though I have a humidifier already? Thank you.
Dry mouth and full face masks are good friends. The Biotene would help. Keeping a bottle of water to drink whenever you need it during the night may as well. You are getting the dry mouth because you breathe through it.
Hello, my current setting is 14 at the low end and 16 at the high. I had such dramatic improvements that is why I trusted the changes. However, now I can't get below 6 ahi. Is 6.4 good enough? Or do I need to continue. I realize I need to test over a longer period of time, but the changes I have made have been dramatically better over the last week. I had been stuck between 15 and 25 ahi for 3 months. In Sleepyhead, it seems that no matter how high the pressure goes, ex 16, I still choke. Any ideas? Or should I just keep raising it? Thank you.
RE: Partial Success, Finally, need advice - zonk - 09-26-2012
I would turn EPR off and lower the minimum pressure but keep in mind what works for one person may be bad for another
Its matter of trial and error to find the sweet spot
RE: Partial Success, Finally, need advice - zzzzk - 09-26-2012
(09-26-2012, 12:37 AM)zonk Wrote: I would turn EPR off and lower the minimum pressure but keep in mind what works for one person may be bad for another
Its matter of trial and error to find the sweet spot
Hello,
I already turned off epr and it helped me a LOT! However, I can't get below the 6.3 barrier for AHI. Is that still too high? I read people complaining about level 2 so that confuses me.
I look at the graph in sleepyhead when the pressure ramps up, but it doesn't stop the OA's usually. I did notice my periodic breathing went down with higher pressure. I raised the minimum because it seemed it did not ramp up in time to help. My problem seems to be I need to use saline nasal sprays to open my sinuses, but that is so variable. Any ideas, appreciated...