11 Years and almost no Improvement

[sephiro499]

Here is more flow info (if it matters)

Look to other things that are disturbing your sleep. you're showing sleep disturbances in the breathing, but they don't seem to be caused by breathing problems.

I had very invasive thoracic surgery when I was a teenager. Now they use a minimally invasive technique. Just to give you an idea of the surgery I have so much scar tissue it looks like I have pneumonia and it goes from mid chest all the way down to my diaphragm.

This surgery was 25yrs ago but I only learned of this scar tissue this Summer before a routine physical!

But I've had a PFT more than once, and it is always fine. I do sleep with a 'posture brace' and I have to do that to stop my shoulder from hyper extending. The only other thing I can think of disturbing my sleep/breathing is pain or the brace that secures itself around the abdomen.

edit: I think I need to see a Physiatrist next year after typing all of this out to get a real brace from a DME and an overall general opinion.

Pain certainly can disturb sleep. If something is hurting, you'll wake up a little and try to move to a position that hurts less.

Ok. So outside of the things disrupting my sleep (which I'm going to actively look in to) is there any evidence to suggest I might benefit from a different type of machine? Because man oh man would I love to just (like the ASV) put the thing on and it 'learns' everything and I feel great. I do see a pain dr and take pain meds have for 5yrs, but I caution to take them at night, but I might try it just to see. I could always wear an oximeter to be allay any fears.

Should I ask the Sleep Dr in Jan for a bilevel titration? I do wonder if being compliant or noncompliant for my insurance (Medicare) will increase my chances of getting what I want, or not. If they look at the sd card from the sys one for all they know I'm not using any cpap/bipap it.

[palerider]

is there any evidence to suggest I might benefit from a different type of machine?

I'm not really seeing anything that indicates that.

Because man oh man would I love to just (like the ASV) put the thing on and it 'learns' everything and I feel great.

There is no machine on the market that 'learns' anything, yet. Every one of them starts over from whatever it's settings are every time you turn it on. yes, ASVs are very smart, modifying what they're doing for every breath, but if it's not your breathing that's causing problems, even they aren't going to help you.

I do see a pain dr and take pain meds have for 5yrs, but I caution to take them at night, but I might try it just to see. I could always wear an oximeter to be allay any fears.

You could wear that with an alarm set for low oxygen levels, and take some meds so that you can have a less painful sleep. Unless you really dope yourself up, I don't think it should have a large adverse affect.

Should I ask the Sleep Dr in Jan for a bilevel titration? I do wonder if being compliant or noncompliant for my insurance (Medicare) will increase my chances of getting what I want, or not. If they look at the sd card from the sys one for all they know I'm not using any cpap/bipap it.

Again, your numbers are good, you're not having breathing problems from what I'm seeing. Try taking something to help your pain at night, first.

[sephiro499]

is there any evidence to suggest I might benefit from a different type of machine?

I'm not really seeing anything that indicates that.

Because man oh man would I love to just (like the ASV) put the thing on and it 'learns' everything and I feel great.

There is no machine on the market that 'learns' anything, yet. Every one of them starts over from whatever it's settings are every time you turn it on. yes, ASVs are very smart, modifying what they're doing for every breath, but if it's not your breathing that's causing problems, even they aren't going to help you.

I do see a pain dr and take pain meds have for 5yrs, but I caution to take them at night, but I might try it just to see. I could always wear an oximeter to be allay any fears.

You could wear that with an alarm set for low oxygen levels, and take some meds so that you can have a less painful sleep. Unless you really dope yourself up, I don't think it should have a large adverse affect.

Should I ask the Sleep Dr in Jan for a bilevel titration? I do wonder if being compliant or noncompliant for my insurance (Medicare) will increase my chances of getting what I want, or not. If they look at the sd card from the sys one for all they know I'm not using any cpap/bipap it.

Again, your numbers are good, you're not having breathing problems from what I'm seeing. Try taking something to help your pain at night, first.

Thank you so much Palerider, your analysis is invaluable! There is only one other theory I have. I started sleeping in Oct with a ramp due to sinus issues. In July I had sinus surgery. Long story short in Sept I woke up one day in extreme sinus pain. Pain so bad (worse than what prompted the sinus surgery) somehow I made it to an urgent care. For the next month or so I would wake up every 30mins-2hrs in severe pain. All I could do was sit in my office chair in my room and wait for it to go away. Felt like the bone above my teeth was bulging. After 6 rounds of antibiotics (yes 6) it went away on the third round of Bactrim. My maxillary sinus (the side I sleep on; can't sleep on the other) was filled with fluid, even more than before surgery -I have both ct's on disc.

The ramp, while good for sinus drainage, is causing pain issues (I think). I'm going without the ramp tonight but if there is even a hint of maxillary sinus pain I'm going to have to make a very hard decision. So while laying flat I think it is generally agreed upon is not good for sinus drainage, how can the maxillary sinus drain if the nasal cavity is pressurized all night? Plus add the fact THAT is the side I'm sleeping on, face down. I've got to find a way to sleep on my other side....

If I can put up with it (and I did for 25 days after surg w NO cpap) I assume nothing is stopping me from sleeping in a chair with cpap? I might be forced to do it.

[squid13]

I have a friend that sleeps in a chair with his cpap and has for quite awhile.

[palerider]

\ So while laying flat I think it is generally agreed upon is not good for sinus drainage, how can the maxillary sinus drain if the nasal cavity is pressurized all night?

I haven't ever heard any discussion on sinus drainage being affected by cpap, but as to your question, the slight pressure that cpap creates, if anything, I'd think it would help draining, but helping to open up any swollen passages, allowing fluid to drain... but that's just supposition.

I do know that, personally, when I've got sinus problems (much less frequently since I started CPAP), I sleep better with the cpap helping me breathe, and helping open things up.

[sephiro499]

\ So while laying flat I think it is generally agreed upon is not good for sinus drainage, how can the maxillary sinus drain if the nasal cavity is pressurized all night?

I haven't ever heard any discussion on sinus drainage being affected by cpap, but as to your question, the slight pressure that cpap creates, if anything, I'd think it would help draining, but helping to open up any swollen passages, allowing fluid to drain... but that's just supposition.

I do know that, personally, when I've got sinus problems (much less frequently since I started CPAP), I sleep better with the cpap helping me breathe, and helping open things up.

It might just be the pressure of the mask on my face. God.. this is impossible!!! I had to 'bolt' that damn thing to my face. I know.. if you have to do that, you are doing it wrong. But if I don't it will face fart and leak. When I was in 8/10 pain nasal pillows could be tolerated for slightly longer. But now I'm afraid to wear nasal piillows because I have nasal valve graft and I noticed when wearing them and the tube pulling on my nose all night, I actually woke up and my nose was crooked like before my surgery! It did straighten itself. I don't want to jeaopardize the surgery itself so now I hesitate to use nasal pillows.

Now my left ear is clicking when I swallow. I just can't win.

[palerider]

\ So while laying flat I think it is generally agreed upon is not good for sinus drainage, how can the maxillary sinus drain if the nasal cavity is pressurized all night?

I haven't ever heard any discussion on sinus drainage being affected by cpap, but as to your question, the slight pressure that cpap creates, if anything, I'd think it would help draining, but helping to open up any swollen passages, allowing fluid to drain... but that's just supposition.

I do know that, personally, when I've got sinus problems (much less frequently since I started CPAP), I sleep better with the cpap helping me breathe, and helping open things up.

It might just be the pressure of the mask on my face. God.. this is impossible!!! I had to 'bolt' that damn thing to my face. I know.. if you have to do that, you are doing it wrong. But if I don't it will face fart and leak. When I was in 8/10 pain nasal pillows could be tolerated for slightly longer. But now I'm afraid to wear nasal piillows because I have nasal valve graft and I noticed when wearing them and the tube pulling on my nose all night, I actually woke up and my nose was crooked like before my surgery! It did straighten itself. I don't want to jeaopardize the surgery itself so now I hesitate to use nasal pillows.

Now my left ear is clicking when I swallow. I just can't win.

Pressure on your face might be it.
Mask liners were a huge improvement for me when I used a FFM, they didn't prevent all the leaks, but they eliminated the farts and squeals.

Maybe a nasal mask, instead of a FFM or pillows?

[sephiro499]

\ So while laying flat I think it is generally agreed upon is not good for sinus drainage, how can the maxillary sinus drain if the nasal cavity is pressurized all night?

I haven't ever heard any discussion on sinus drainage being affected by cpap, but as to your question, the slight pressure that cpap creates, if anything, I'd think it would help draining, but helping to open up any swollen passages, allowing fluid to drain... but that's just supposition.

I do know that, personally, when I've got sinus problems (much less frequently since I started CPAP), I sleep better with the cpap helping me breathe, and helping open things up.

It might just be the pressure of the mask on my face. God.. this is impossible!!! I had to 'bolt' that damn thing to my face. I know.. if you have to do that, you are doing it wrong. But if I don't it will face fart and leak. When I was in 8/10 pain nasal pillows could be tolerated for slightly longer. But now I'm afraid to wear nasal piillows because I have nasal valve graft and I noticed when wearing them and the tube pulling on my nose all night, I actually woke up and my nose was crooked like before my surgery! It did straighten itself. I don't want to jeaopardize the surgery itself so now I hesitate to use nasal pillows.

Now my left ear is clicking when I swallow. I just can't win.

Pressure on your face might be it.
Mask liners were a huge improvement for me when I used a FFM, they didn't prevent all the leaks, but they eliminated the farts and squeals.

Maybe a nasal mask, instead of a FFM or pillows?

I used a simplus FFM last night. I'm going back to straight cpap even if it empiraclly doesn't say it will help. I feel so terribly awful. Was just talking to a friend and forgot what his name was. Mid 30s dementia? More like sleep terrible mentia.

[palerider]

I used a simplus FFM last night. I'm going back to straight cpap even if it empiraclly doesn't say it will help. I feel so terribly awful. Was just talking to a friend and forgot what his name was. Mid 30s dementia? More like sleep terrible mentia.

Straight cpap at what? Your pressure isn't varying... how do you believe that will help?

[squid13]

What medications are you on? I know I take Lyrica and I have short turn memory lose and that is a side effect and I know how you feel, it's frustrating as hell.

[sephiro499]

I used a simplus FFM last night. I'm going back to straight cpap even if it empiraclly doesn't say it will help. I feel so terribly awful. Was just talking to a friend and forgot what his name was. Mid 30s dementia? More like sleep terrible mentia.

Straight cpap at what? Your pressure isn't varying... how do you believe that will help?

I was going to go with either 14 or 15. I'm giving the vauto another night because I'm going to change something else and want to test against it. Pain is a much bigger problem than I thought. And I need to try sleeping flat again that seemed to work better. If I put my arms over my head that helps alot. Can't do that while I'm sleeping on a ramp. I know this for certain because I've recorded myself sleeping several times with night vision. Putting my arms over my head takes the weight off my chest.

Mask-wise I have the small simplus FFM. I choose this because it is small enough to use as just a nasal mask or just big enough to cover nostrils and mouth. First tried the simplus at a friend's house and I liked the cushion material.

[sephiro499]

I wanted to thank everyone for their help. Unless a compelling reason this will be my last graph. Whatever is going on with my treatment either isn't measurable by a cpap machine. Last night I slept without a ramp. It did help with pain but now I'm having significant sinus distress. All of my sinuses got 'remodeled' this summer so, its not an anatomical problem. For example I could get 25% done with cleaning my room but too much pain and disorientation from having to move my head left to right, going up and down, looking down. I just can't win. I do feel better sleep quality last night but I look terrible with large bags under my eyes.

If the sinus pain continues or escalates my only choices are to sleep at a 90deg angle or discontinue treatment.

Cpap might be a great treatment, but the support system required to make that happen doesn't exist for me.

[sephiro499]

Still begrudgingly using my machine. I'd post a chart but not sure it would do any good. What I have noticed is that if I sleep flat (which I've done for years and is the most comfortable)I will wake up with sinus pain. After sinus surgery early this year and sleeping flat for around 6 weeks after being cleared I developed 8/10 pain in my right maxillary sinus. And CT confirmed it was full of fluid, moreso than before surgery. Pain so bad I'd wake up every 30min-2hrs and have to sit and wait an hour for the pain to dissipate.

My question is what can I do about this? The lowest I can manage to get myself to fall asleep is a 7in ramp and a short thick pillow. I've tried sleeping with two 7in ramps but I'm not sure if it's causing other problems.

Even though I hate cpap and it was never the treatment that I was promised, it is better than not using it, even if only marginally. If I keep developing sinus pain, pressure, and disorientation when using it, I don't know what to do. I have to be able to move my head left-right up-down without feeling 'out of it'. I've fiddled with the humidifier numbers and can't seem to make any improvement. The only constant being when the humidifier runs out of water, I will always wake up.

[squid13]

My question is what is your Doctor going to do about it, the fluid?

[sephiro499]

My question is what is your Doctor going to do about it, the fluid?

6 rounds of antibiotics and the severe pain went away. Except I can feel some of the pressure returning and my left ear clicks when I swallow. I had surgery to fix this problem in the first place. That's why I'm trying to figure out why it came back so soon.