CPAP Therapy Ineffective

[D-10]

I've educated myself on CPAP therapy somewhat thanks to all the posts and links on this forum. I even had my DME exchange my basic CPAP for a data enabled APAP. So thanks to everyone for all of your posts.

I used my CPAP for 5 weeks and I've had my APAP (RemStar System One APAP with A-Flex & C-Flex) for a week. I am comfortable with my masks (full face and nasal pillow) but CPAP therapy has failed to improve my sleep at all. My AHI is 14.7 which is almost identical to my AHI during my first sleep study. Almost every time I doze off, I immediately wake up taking a deep breath with my lungs slightly burning. This happens no matter what pressure setting I use or what settings I change (clinician's setup mode) on my machine. I wake up like this even if I am not using my machine. The only difference the APAP makes is that I wake up to an extra burst of pressure every time I doze off.

I have a very hard time falling asleep and can be in bed for 10-12 hours and I never feel rested after sleeping. Combined between my first sleep test and my titration I got a total of 19 minutes of SWS sleep (stages 3&4). I was diagnosed with mild OSA but I feel that I may have mixed sleep apnea. Although I am diagnosed as "mild" I have not had a restful night of sleep since I was a kid and have become very forgetful since, so for me the effects are not mild at all. Almost everyone in my family sleeps too much and my grandfather has a CPAP that he swears by. I'm only 29 years old and I'm moderately fit. Also, the best sleep of my life was after a nurse gave me oxygen when I was having trouble sleeping during an overnight hospital stay. Ihave 2 questions:

1.Can you be diagnosed with mixed sleep apnea if the mixed episodes only occur as hyponeas? I don't think I have complex SA because I think I have centrals even w/o CPAP.
2. I meet with my PCP on Tuesday. How do I get the most out of this appointment (it takes about 1 month to get an appointment on post)?

Any help or suggestions would be appreciated. I've changed every setting on my machine and still no help.

Here is a summary of my 1st sleep test and my titration:

Test 1
AHI 13.3 (mild sleep apnea)
12 Obstructive Apneas
0 Central Apneas
0 Mixed Apneas
36 Hypopneas
Wake (after sleep onset) - 148.9 minutes
Stage 1 - 35.5 min.
Stage 2 - 190.5
SWS - 0
REM - 44.5
O2Sat - 90-94% for 43% of sleep time; 95-100% for 54.1% of sleep time; 80-89% for the rest
Sleep Efficiency 57.6%
Respiratory related arousals - 13
Spontaneous EEG arousals - 23
The sleep tech told me that sometimes I had hypopneas without any breathing effort (central hypopnea?).


Titration
AHI 14.5 (mild sleep apnea)
31 Obstructive Apneas
30 Central Apneas
0 Mixed Apneas
17 Hypopneas
Wake (after sleep onset) - 143.1minutes
Stage 1 - 58 min.
Stage 2 - 225.5
SWS - 19
REM - 45.5
O2Sat - 90-94% for 3.2% of sleep time; 95-100% for 96.6% of sleep time; 80-89% for the rest
Sleep Efficiency 68.5%
Respiratory related arousals - 43
Spontaneous EEG arousals - 40
The tech told me that I woke up almost anytime he changed the pressure. The recommendation was for a setting of 12 but this is based on only 18 minutes of sleep time at that setting. I had 18 minutes at a setting of 5 as well without any events. There were obstructive and central apneas at every other pressure setting (didn't go above 12).

Again, any help would be appreciated. I'm not sure what to do at this point.


EDIT:
********************************DATA RESULTS*****************************
I wasn't sure if this info should go in the original post or in a reply.

The data was shockingly consistent. No changes in data for APAP vs. CPAP. I woke up less with A-Flex or C-Flex vs. constant pressure.

Findings:
1. Prescribed 12cm but my OAs and Hypopneas disappear at 9cm.
2. At 5cm, my CAs occur about 2 per hour.
3. Above 5cm, my CAs occur 6-7 times per hour - AHI = 6-7...ALL CENTRALS
4. I did not have any CAs in the diagnostic study so the appearance and consistence of the centrals suggest Complex Sleep Apnea.


I wake up feeling MUCH worse than before I started therapy and I felt horrible back then. This is my 6th week on CPAP. If things don't improve soon, I will have to give up on it. I can't handle this much longer. I meet with my PCP at the military post Tuesday morning. I have Tricare Prime for Active Duty Family Members. What should I say to her and what are my treatment options besides the expensive Adapt-Servoventilator machines? Getting Tricare to approve an expensive machine for a diagnosis that is questioned in the literature will be extremely difficult.

[Emilia]

Well, clearly, you have problems during sleep. Getting the software so you can see what is happening is essential to figure this out. Your AHI is entirely too high, and to get it down to below 5 will take data to show what the problems are. Since you had so little sleep during your study, using the auto to self-titrate at home to figure out appropriate pressures will require the software. Please consider purchasing this so you can pro-actively figure out the issues with our help and remedy the situation. Those who use your same machine and mask will be able to assist the best, but there is a wealth of veteran and knowledgable folks here to help you figure it all out.

EDIT: Please take a minute to go to the User Control Panel (top left) and then Profile.....choose Edit Equipment and then choose your gear from the drop down menus. After that, choose to show them in TEXT. This will post your equipment automatically at the bottom of each of your posts in blue..like mine below. This save us from having to ask about it each time you post a question.

[Julie]

Could you be having GERD (acid reflux) episodes bad enough to keep you from decent sleep? So many of us are in that boat, and we do many things to deal with it, not the least of which is quite effective (and free) - raising the head of the bed on blocks or whatever about 6 inches or so - it's all that's needed.

[D-10]

Could you be having GERD (acid reflux) episodes bad enough to keep you from decent sleep? So many of us are in that boat, and we do many things to deal with it, not the least of which is quite effective (and free) - raising the head of the bed on blocks or whatever about 6 inches or so - it's all that's needed.

I don't think so. I never had any problems with acid reflux while awake.

[jweeks]

The tech told me that I woke up almost anytime he changed the pressure.

Hi,

This would suggest that you might do better on straight CPAP with no exhale relief or ramp function enabled. This would eliminate any pressure changes while you are sleeping.

-john-

[Guest]

The tech told me that I woke up almost anytime he changed the pressure.

Hi,

This would suggest that you might do better on straight CPAP with no exhale relief or ramp function enabled. This would eliminate any pressure changes while you are sleeping.

-john-

Unfortunately, I had a straight CPAP with no exhale relief for about a month prior to this week.

[Julie]

Hi - it is very possible to have acid reflux while awake but be unaware of it, it's called silent GERD, but when you lie down and go to sleep, it can really become a problem, and you might want to at least try 1-2 tricks to test for it, e.g. have no coffee or chocolate after noon for 2 days, nor particularly spicy food, and do take a small Tums before bed (or half a large one... you don't want more as it could set up a sort of backlash in your stomach, if you get rid of more acid than it needs to work properly).

[bdp522]

Some people take a very long time to see even small improvements. That being said...do you use the ramp? What are your current settings on the machine? When you make a change to your settings, how long do you wait before making any other changes? What are your leak rates? How is your sleep hygiene?

Brenda

[Hose_Head]

You've not indicated what pressure settings you are using on your apap. If it's set to "wide open" (e.g. 4-20) as is so often the case, then it's likely that this is a part of your problem. The apap cannot response quickly enough and the frequent pressure changes are waking you up.

Have a look at your data to find your 90% pressure level. Based on that, you may wish to change your pressure settings to minimum of 2 below the 90% level, and max to 1 or 2 above the max level. Try that for a week and then repeat the exercise. This time, reset your pressure settings to 1 below the new minimum level and max of 1 above the max level. The purpose of this exercise is to titrate yourself, at home, to correct the poor titration that resulted from your lack of sleep in the sleep lab.

If you are disturbed by pressure changes, you also may wish to reduce the aflex setting or even turn it off. Whatever is most comfortable for you.

Once you've gained some experience with the above (a few weeks, perhaps), and if pressure changes are still bothering you, then you might wish to try straight cpap, set at your 90% pressure level.

Keep an eye on your AHI and centrals. Try to reduce them to a minimum. Above all, pay attention to how you are feeling. If you have an AHI of< 5 but still feel tired, then it may be worth it to try to get the AHI to below 1.

None of the above will address your centrals. They should be discussed with your sleep doctor. Follow his/her advice.

Note I'm not a doctor, but I did sleep with an apap last night.

[Guest]

********************************DATA RESULTS*****************************
I EDITED MY ORIGINAL POST TO ADD THIS. I wasn't sure if this info should go in the original post or in a reply.


The data was shockingly consistent. No changes in data for APAP vs. CPAP. I woke up less with A-Flex or C-Flex vs. constant pressure.

Findings:
1. Prescribed 12cm but my OAs and Hypopneas disappear at 9cm.
2. At 5cm, my CAs occur about 2 per hour.
3. Above 5cm, my CAs occur 6-7 times per hour - AHI = 6-7...ALL CENTRALS
4. I did not have any CAs in the diagnostic study so the appearance and consistence of the centrals suggest Complex Sleep Apnea.


I wake up feeling MUCH worse than before I started therapy and I felt horrible back then. This is my 6th week on CPAP. If things don't improve soon, I will have to give up on it. I can't handle this much longer. I meet with my PCP at the military post Tuesday morning. I have Tricare Prime for Active Duty Family Members. What should I say to her and what are my treatment options besides the expensive Adapt-Servoventilator machines? Getting Tricare to approve an expensive machine for a diagnosis that is questioned in the literature will be extremely difficult.

[D-10]

Hi - it is very possible to have acid reflux while awake but be unaware of it, it's called silent GERD, but when you lie down and go to sleep, it can really become a problem, and you might want to at least try 1-2 tricks to test for it, e.g. have no coffee or chocolate after noon for 2 days, nor particularly spicy food, and do take a small Tums before bed (or half a large one... you don't want more as it could set up a sort of backlash in your stomach, if you get rid of more acid than it needs to work properly).

I'll give that a try tonight. I dislike coffee, chocolate and spicy foods and haven't eaten them for a long time.

[D-10]

Some people take a very long time to see even small improvements. That being said...do you use the ramp? What are your current settings on the machine? When you make a change to your settings, how long do you wait before making any other changes? What are your leak rates? How is your sleep hygiene?

Brenda

My sleep rate is very good for my mask and I go to sleep and wake at fairly consistent times.

[sagesteve]

For what it's worth...I've changed a few things after all that I've read here over the years on the forum. I WAS using the The RemStar...switched to the Intellipap. LOVE it!! Made it much more comfortable to breath and I did sleep better. Then I bought the Fisher Paykel humidifier, good move. I was sleeping pretty good with an AHI at .05 to a 1.0. I dreamt pretty well. Slept 6 to 7 hours, still not absolutely great (I'm a perfectionist in everything I do...so I keep trying to get it better and better). Went through 3 mask(s), each one very good for what I needed. The CPAP Pro ( in the mouth...good mask but got tired of "in the mouth") the Sleepweaver (Cloth..it got super cold at night during the winter and just didn't handle the cold room well at all. It made my nose freeze! It was good for summer) and my standard FULL Quattro. I used the Quattro for over a 3 year period mostly. No leaks, but my teeth alignment was changing for sure. It was also felt "hard" on my face and under my mouth. Read about the Fisher Paykal hc431 https://www.cpap.com/productpage/fisher ... -mask.html long story short, FANTASTIC!!! The Quattro ( as good as I felt it was ) didn't even compare.
The mask IS the thing in all of this. I sleep 6 to 7 hours straight and DREAM LIKE CRAZY. I breath very comfortably with my Intellipap...did NOT LIKE the Aflex or Cflex of the Remstar, I use the Remstar for travel ( I don't travel but once a year). My teeth feel so much better with the hc431 AND when you get it just right? Feels like nothing on your face. No leaks...perfect set up. This is the best I have felt in the 3 years of CPAP therapy. I have central aps. Just for info...we went out and bought a Fisher & Paykel washer and dryer today! Obviously I'm sold on Fisher & Paykel. I'll probably get their CPAP machine next go around...buts I do loves my Intellipap. No problems with it at all.

[Hose_Head]

EDIT:
********************************DATA RESULTS*****************************
I wasn't sure if this info should go in the original post or in a reply.

The data was shockingly consistent. No changes in data for APAP vs. CPAP. I woke up less with A-Flex or C-Flex vs. constant pressure.

Findings:
1. Prescribed 12cm but my OAs and Hypopneas disappear at 9cm.
2. At 5cm, my CAs occur about 2 per hour.
3. Above 5cm, my CAs occur 6-7 times per hour - AHI = 6-7...ALL CENTRALS
4. I did not have any CAs in the diagnostic study so the appearance and consistence of the centrals suggest Complex Sleep Apnea.


I wake up feeling MUCH worse than before I started therapy and I felt horrible back then. This is my 6th week on CPAP. If things don't improve soon, I will have to give up on it. I can't handle this much longer. I meet with my PCP at the military post Tuesday morning. I have Tricare Prime for Active Duty Family Members. What should I say to her and what are my treatment options besides the expensive Adapt-Servoventilator machines? Getting Tricare to approve an expensive machine for a diagnosis that is questioned in the literature will be extremely difficult.

It looks as though you're going to need a LOT of support from your sleep doc. Work with her as closely as you can. But don't give up. The alternative is worse.

Please let us know how you make out on Tuesday!

[robysue]

Findings:
1. Prescribed 12cm but my OAs and Hypopneas disappear at 9cm.
2. At 5cm, my CAs occur about 2 per hour.
3. Above 5cm, my CAs occur 6-7 times per hour - AHI = 6-7...ALL CENTRALS
4. I did not have any CAs in the diagnostic study so the appearance and consistence of the centrals suggest Complex Sleep Apnea.

In light of item 1, I'd sure the heck as the doctor why the prescribed pressure was 12cm and whether it's reasonable to reduce the pressure to that level to see if it helps with the centrals.

I wake up feeling MUCH worse than before I started therapy and I felt horrible back then. This is my 6th week on CPAP. If things don't improve soon, I will have to give up on it. I can't handle this much longer. I meet with my PCP at the military post Tuesday morning. I have Tricare Prime for Active Duty Family Members. What should I say to her and what are my treatment options besides the expensive Adapt-Servoventilator machines? Getting Tricare to approve an expensive machine for a diagnosis that is questioned in the literature will be extremely difficult.

You absolutely MUST mention (and more than once!) that you are feeling MUCH worse tha before you started CPAP. [I know---I've been there and done that.] You must also tell the doctor that you are SERIOUSLY THINKING you cannot handle much more of this. Write down EVERYTHING that's gotten worse since starting therapy. Make one copy for the doctor to keep and one copy for your own records.

Based on my own experiences in dealing with being (slightly) over titrated and unable to tolerate my original prescribed pressure, I'd suggest that you ask whether the following might be a reasonable plan of action:

A week of auto-titration with the Auto PAP running in a range of something like 4cm--12cm. And see what the 90% pressure setting looks like. Then maybe lower the pressure to that and see if you feel any better and see if your numbers start to improve. And if that doesn't help, then maybe your doctor needs to consider recommending a bi-level PAP machine. BiPAPs (Resprionics' name for them) are more expensive than Autos, but much less expensive than Adapt-Servoventilator machines.

In my case, after 2 or 3 weeks of straight CPAP where I was literally falling asleep on my feet during the day, my doctor had me do an autotitration that resulted in me being switched to APAP with a max pressure less than my original tirtrated pressure. After another 4 or 5 weeks, I still was feeling worse than I was before starting CPAP, and much to my surprise, the doctor suggested a bi-level titration. I'm scheduled to switch machines sometime this week. I have hopes that the bi-level may well address some of the most pressing issues that I think may be contributing to the continued daytime sleepiness and exhaustion I'm still feeling.

I wish you luck in working with your doctor to come up with alternative ways to make the CPAP, APAP, or Bi-PAP therapy work for you.