[Treatment] Please Help! Apap to Bilevel x2 years ongoing problems need titration help

[Evie1]

Hi There! 

Long overdue Bilevel titration help is badly needed as now I have some health consequences and feel like I’m losing it due to sleep debt. I am hoping its not too late and that the experts here can chime in and help.
 
 I was able to get a bilevel after years and years of problems and discomfort with the Apap , about 10yrs. I needed more pressure with APAP but was very uncomfortable with higher pressures 11-12 cm. After a few years of complaining and persisting, I was approved for Bilevel. 
 
 Yay! That took some adjusting, about 2 months. then it just seemed ok. Not the great results I was hoping for but was a bit better. I was not completely starved for air.
 
 Lately, I just can’t sleep again, like prior to the Bilevel, waking with racing heart, wake often and wake with pressure headaches and aerophagia. I am exhausted and in sleep debt again . This is greatly affecting my cognition and health. I have Polycythemia now secondary to sleep apnea. Stomach is a mess and Im frazzled, forgetful and wired daily.  
 
Please help me to optimize the settings. I used EPR at 3cm with the Apap , but this pressure support was set only to 2. I have inched up a bit recently little, but I truly don’t have a good understanding of the pressure settings.
 
To me , It appears like I have less pressure support than with my Apap. 3 epr with APAP now 2.4 with Aircurve 10 Vauto for pressure support??
 
Issues: I sometimes feel breath is out of sync
 
            I feel like I am not getting air a bit breathless and out of sync with machine, push pull sensation
 
           I know leaks are an issue. I have allergies and enlarged turbinates, I neti 2x per day, antihistamines, the works!
 
          Used to mouth Tape but allergic to adhesive now, I practice tongue exercises and saw myo therapist for a year, not as good as tape
 
           I have Nasal valve prolapse and told that in office surgery may help with treatment 
         
          Tried The Nightbridge headgear but cant do it. Very uncomfortable. Tried to ace bandage my jaw shut too.
 
          I am trying to decide if I should pursue nasal surgery valve or turbinate surgery . If that would really help me tolerate  treatment. anybody have success with this?
 
But, I first want to try to optimize my settings.  

I am including some recent screenshots:

     
   
   

I see that the leak is an issue. I was definitely better with the tape. I have to work on that. Will try barrier cream then tape? ugh I have eczema and a rash on neck and lips. so?

Any settings changes I can make ? 

I am definitely sensitive to changes so have to precede slowly.

Thank you!

[Deborah K.]

I suggest you change your pressure settings a bit.  I would set the Epap at 8 and the Ipap at 14.  You are often bumping against your top setting, and you immediately jump to above 8.  That's why I make this suggestion.

I have super-sensitive skin, not allergies, and could not tolerate mouth tape.  Then, I found two solutions.  First, I learned that liquid milk of magnesia spread over where the tape would go, then allowed to mostly dry worked.  I used it for a long time, but it was messy and annoying.  Then, I accidentally found something that works way easier.  I ordered barrier cream, thinking like you that it should work.  What I received was a different cream that works way better than barrier cream, which I don't advise.  I ordered Medline Remedy Essentials Barrier Inzo Skin Protectant Cream but received the same brand etc, Prevent Silicone Cream.  I tried it, and it works great!  I don't know if Amazon is still providing this cream instead of Barrier cream, but they probably are.  They also make a more expensive Silicone cream that you can order by name, but why spend the extra money?

Anyway, I just smear some where the tape will go, let it sit just a little, then put the tape on, and all is well.  Trust me, you don't want any to get in your mouth.  It tastes terrible.  Once I have the cream on, I open my mouth and using my finger, wipe so that none gets in my mouth and that takes care of it.

I don't know if it will work for you, but it's something to consider.  Best wishes for finding a good solution for your therapy and for taping!  

[Evie1]

I am still learning to post and reply to posts. I did a repeat post . tried to delete, but couldnt....

[Evie1]

Thank you so much for your response. 

I will take your suggestion and start moving that needle slowly in that direction.  I read your thread and it was very informative. Glad it has worked well for you.

Should I touch the trigger setting and such? 

I have multiple skin allergies. Its a pain. Plus eczema due to environmental allergies. 

So am I understanding right ? It is called Prevent Silicone Cream by Medline ?
I will give it a try. 

Thanks again!

[Jay51]

Concerning the surgeries, I had a septoplasty and turbinate reduction.  They have helped my daily breathing.  

I think it depends on how severe the problems are.  A person with severe problems in this area my benefit more from this type of surgery than someone with minor problems.  

I did a lot of research to decide for myself.  I encourage you to do the same.  You can click on the "Search" tab at the top of the page.  Then type in the terms that you want to research to get unbiased opinions in the threads and posts here at ApneaBoard.  


Also, I encourage you to do your own internet research as well.  Be aware some sites are just selling the surgeries, so look for unbiased testimonies of the particular type of surgery that you are considering. 

I hope that you make the correct decision here.

[Evie1]

Jay51 Thank you for that information and your response. Yes, I have read a lot of posts regarding surgeries. An Overwhelming amount of info and its an important decision I don't take lightly, I am not rushing into it that is for sure. Can you tell me what is considered severe enough?
I can tell flow is impeded when I breath through my nose. I am on all the meds, I probably need more pressure to blast through it all..

[Jay51]

I will try my best to answer of, "what is considered severe enough".  

Your flow limitation in OSCAR are not that bad.  0.05, 0.03, and 0.02 95th percentile.  It seems the pap therapy is helping here.  

Before therapy, I would wake up during the night and couldn't breathe out of my left nostril at all.  Totally closed.  Viewing it through a small handheld mirror, I could see that my septum was very crooked and the hole in my left nostril was smaller than the one in my right nostril.  

My ENT noticed that my lateral walls of my nose (nasal valves) collapsed when I took a deep breath as well.  I tried to get the "Latera" surgery for this, but my insurance denied this.  I can use breath right strips (or equivalent) and silicone nasal dilators to help with this.  

ENT also said that turbinate reduction would help me as well.  

After my 2 surgeries of septoplasty and turbinate reduction, I could breathe better.  The left nostril hole is normal size now as well.  

There is some subjective input needed as well to determine if the surgery will help or not. 

I guess it came down to a cost-benefit (risk:reward) analysis.  I decided to have both surgeries.  For a week or so after the surgery, I had lots of bleeding and trouble breathing through my nose.  But that cleared up fast.  

Maybe ask yourself the question, "Is having these surgeries worth the effort, cost, and week of bleeding afterwards?"  I decided yes, but your answer may or may not be the same.  

I still use my ventilator after having these surgeries. But it did make breathing easier using the ventilator during therapy. And easier breathing during the day as well.  Less congestion as well (I take a prescription nasal spray and medication as well though for allergies). 

I wish you well.

[Deborah K.]

Yes, that's the one. To make sure it will work for you, buy the 2-ounce unscented one for $6.99. Then, if it works (it lasts a very long time), switch to the 4-ounce unscented version.

[Evie1]

Good to know flow limitations are not so bad.

Thank you for sharing your experience. Seems it was positive for you.