WHY IS IT THAT?

macewa · Post by **macewa** » Fri Mar 16, 2012 1:04 pm

Why is it that whenever I change my air pressure numbers or my mask, I have a wonderful night and from then on, everything goes down hill fast? And now, because of the straps on the masks I am losing hair and I cannot afford to be losing hair!

All I can say at this point, 7 months down the road is, that I am not better, I am sleeping less, and if it wasn't for the Ritalin, I doubt I'd be able to do anything. The masks on a whole just cause me pain and keep me from sleeping and since I've been on the BiPap machine, I have had horrible vertigo. That's almost 7 months of vertigo which caused me to have 3 MRIs and an ultrasosund only to find out it is about my left ear and I suspect that is from the air pressure of the machine as I can feel it when I start the machine up. Then to try to help my sleep apnea, I've had surgery for my deviated septum, turbinate reduction and have lost 20 pounds. So, it's not that I'm not trying -

I know someone is going to jump on me for whining, but you know what -- sometimes a person needs to whine.

I just cannot help but wonder how so many people can have this problem and they haven't come up with something that works better. And except for people like you all, no one really seems to give a "you know what." I truly can understand why some people give up and quit and I don't want to be one of them.

Now I'm being asked if I think a sleep study is necessary since I'm doing all this stuff on my own (keeping nightly records, etc). Should I go in and have half a night w/o mask and second half tritation? or just tritation? How the heck do I know? the only thing I can see is for me to try to get close to the right number and if I'm still having a lot of Clear Airways and Periodic Breathing, go in and have them check for that.

Maxie · Post by **Maxie** » Fri Mar 16, 2012 1:17 pm

Now I'm being asked if I think a sleep study is necessary since I'm doing all this stuff on my own (keeping nightly records, etc). Should I go in and have half a night w/o mask and second half tritation? or just tritation? How the heck do I know? the only thing I can see is for me to try to get close to the right number and if I'm still having a lot of Clear Airways and Periodic Breathing, go in and have them check for that.

Have you had a sleep study? Sometimes you have to whine and let go of things and then go back to trying something different. Compared to the experience on this forum I am a newbie so the main thing I can tell you is that you have to try different things. It seemed to take me forever but I was totally determined that it was going to work. My friend's sister-in-law died of diagnosed sleep apnea because she could not afford the equipment so I am going to make it work for me one way or another. And finally I can say that in every way it is working.

chunkyfrog · Post by **chunkyfrog** » Fri Mar 16, 2012 1:21 pm

I'm sorry.
It's my fault; (it's Friday.)
I'll try to do better next week.
I know I'd be whining even more if it were me.
It'll get better--I feel it in my bones--or was that arthritis?

portiemom · Post by **portiemom** » Fri Mar 16, 2012 5:09 pm

Macewa, Please don't give up. I've been on cpap for a long time and I am just now getting some better days. I have other health issues involving my spine, and you know about my workman's comp thing, that said the alternative to cpap is not pretty. I as being checked for MS when as a last straw they did the sleep study, I am what the doc. called pressure sensitive, doesn't surprise me I'm a super-sensitive person in all most all areas, small changes in apneas or pressure wake me and for many years I travelled in a complete fog. Thanks to the folks here, the fog is lifting on more and more days. If I were you I would have a sleep study done and be sure you research the place and doctors you will be going to. Everyone responds differently to treatment, some folks need different types of machines, masks, meds. etc. There is a wealth of knowledge here on the site, and wonderful people that share it all with you! God Bless, and hang in there, I'm a whiner too my friend.

NateS · Post by **NateS** » Sat Mar 17, 2012 2:07 pm

Sure glad to see that you are getting some helpful and sympathetic responses, macewa.

But since it is likely that very few members take the time to read all the new topics, I wonder how much additional potential advice and helpful responses you may be missing out on with such a nondescript Topic like "WHY IS IT THAT?"

Even putting something like "Discouraged with Progress" etc. in your Topic title might help, don't you think?

Best regards and good wishes to you,

Nate

Therapist · Post by **Therapist** » Sat Mar 17, 2012 7:31 pm

macewa wrote:
All I can say at this point, 7 months down the road is, that I am not better, I am sleeping less, and if it wasn't for the Ritalin, I doubt I'd be able to do anything. The masks on a whole just cause me pain and keep me from sleeping and since I've been on the BiPap machine, I have had horrible vertigo. That's almost 7 months of vertigo which caused me to have 3 MRIs and an ultrasosund only to find out it is about my left ear and I suspect that is from the air pressure of the machine as I can feel it when I start the machine up. Then to try to help my sleep apnea, I've had surgery for my deviated septum, turbinate reduction and have lost 20 pounds. So, it's not that I'm not trying -

You are having a tough time honey. I don't know what your pressure is now but I see when you first joined you said it was 22 cm. That can be very difficult to use the mask properly and prevent leaks at such a high pressure.

Have you tried sleeping on your sides or stomach to see if a lower pressure will work there? From your sleep study did you sleep much on your sides or stomach and was your AHI lower? What was your AHI when you were diagnosed?

Did the ENT who did your nasal surgery offer reasons for your sleep apnea? Did he mention large tongue, large soft palate, narrow jaw, obesity, or any other factors?

Do you mind saying how old you are and what your BMI is?

My prayers for you tonight,

T.

macewa · Post by **macewa** » Sat Mar 17, 2012 10:49 pm

Initially I was started on BiPap straight. I just got a copy of my sleep study and it shows that my Rx was for auto BiPap with IPAP max 25/EPAP min 13. What a difference that would have made. What I was on was horrid! and I ended up with one side of my nose (the side that had abt 80% blockage from deviated septum) burning so bad that it hurt to breathe regularly, and made it impossible to use the BiPap at times. From sept 15 until Dec 1, I was on that setting and my clear airway apneas went as high as 62.85 (every night high ranging from 26 to the 62). When I complained to that doctor that I couldn't deal with it (burning nose problem) he just said I had to use it or I was going to forfeit it for non-compliance. Based on the fact he didn't hear me and try to help me, I went to another doctor and he put me on EPAP 15/IPAP 20. I felt like heck so he changed it on 12/20 to 17/22. I have since gotten the SleepyHead and gone back and looked at my charts for that time and I did pretty good with the OAs, but my Hypoponeas and Clear Airways were too high. (of course he didn't know that and neither did I at that time). The problem was my nose burned so badly and there wasn't anything that would help it. Everything they had me try only made it burn more. I have not been back to him because I felt I had to put on armor to go in and see him. I did not care for how he dealt with me, his snide remarks and did not need the added stress in my life. My ENT did the surgery on my deviated spectrum and reduced turbinates. She gave me a Rx to do whatever was necessary to get things right. I have been working with my DME RT. We have added O2 to my machine because my oxygen levels were dropping too low on the machine alone. Finally on Feb 20 she changed me to auto BiPap and we started out at 10/15 and that wasn't working. Then we did 10/22 and on that again, the OAs were better, but the others were high. With trial and error, 11/22 seems better, but it's still not what it should be. On my study it states that respiratory events were more severe, with greater oxygen desaturations, during REM sleep. I suspect that is still happening because I will have clusters that are really bad and I suspect that is REM time. I had pain across the bridge of myh nose with the nasal mask and full face masks (severe enough to wake me up during the night). I changed to a total face mask which I loved, but it is known for its leaks. As soon as the new model comes out she will switch me over. I am trying out nasal pillows for the first time, but doubt that they are going to work for me (mouth breather that I am). I'll be 73 in August, 5'1" and currently weigh 142. I need to lose about 10 more pounds, but I have a large frame and when I weigh less people think I'm ill. I am currently on meds to keep me awake during the day as I went into some type of narclopsey and lost a new job because of it. Oh, I sleep somewhat propped up and try to sleep on my side. Stomach no. No way I could do that with the mask. My ENT can't understand why I'm having to use such high pressures. So - that's my story. I'm going to hit submit now and if there are typos, my apologies.

[/quote]

You are having a tough time honey. I don't know what your pressure is now but I see when you first joined you said it was 22 cm. That can be very difficult to use the mask properly and prevent leaks at such a high pressure.

Have you tried sleeping on your sides or stomach to see if a lower pressure will work there? From your sleep study did you sleep much on your sides or stomach and was your AHI lower? What was your AHI when you were diagnosed?

Did the ENT who did your nasal surgery offer reasons for your sleep apnea? Did he mention large tongue, large soft palate, narrow jaw, obesity, or any other factors?

Do you mind saying how old you are and what your BMI is?

My prayers for you tonight,

T.[/quote]

Therapist · Post by **Therapist** » Mon Mar 19, 2012 8:15 am

macewa wrote:Initially I was started on BiPap straight. I just got a copy of my sleep study and it shows that my Rx was for auto BiPap with IPAP max 25/EPAP min 13. What a difference that would have made. What I was on was horrid! and I ended up with one side of my nose (the side that had abt 80% blockage from deviated septum) burning so bad that it hurt to breathe regularly, and made it impossible to use the BiPap at times. From sept 15 until Dec 1, I was on that setting and my clear airway apneas went as high as 62.85 (every night high ranging from 26 to the 62). When I complained to that doctor that I couldn't deal with it (burning nose problem) he just said I had to use it or I was going to forfeit it for non-compliance. Based on the fact he didn't hear me and try to help me, I went to another doctor and he put me on EPAP 15/IPAP 20. I felt like heck so he changed it on 12/20 to 17/22. I have since gotten the SleepyHead and gone back and looked at my charts for that time and I did pretty good with the OAs, but my Hypoponeas and Clear Airways were too high. (of course he didn't know that and neither did I at that time). The problem was my nose burned so badly and there wasn't anything that would help it. Everything they had me try only made it burn more. I have not been back to him because I felt I had to put on armor to go in and see him. I did not care for how he dealt with me, his snide remarks and did not need the added stress in my life. My ENT did the surgery on my deviated spectrum and reduced turbinates. She gave me a Rx to do whatever was necessary to get things right. I have been working with my DME RT. We have added O2 to my machine because my oxygen levels were dropping too low on the machine alone. Finally on Feb 20 she changed me to auto BiPap and we started out at 10/15 and that wasn't working. Then we did 10/22 and on that again, the OAs were better, but the others were high. With trial and error, 11/22 seems better, but it's still not what it should be. On my study it states that respiratory events were more severe, with greater oxygen desaturations, during REM sleep. I suspect that is still happening because I will have clusters that are really bad and I suspect that is REM time. I had pain across the bridge of myh nose with the nasal mask and full face masks (severe enough to wake me up during the night). I changed to a total face mask which I loved, but it is known for its leaks. As soon as the new model comes out she will switch me over. I am trying out nasal pillows for the first time, but doubt that they are going to work for me (mouth breather that I am). I'll be 73 in August, 5'1" and currently weigh 142. I need to lose about 10 more pounds, but I have a large frame and when I weigh less people think I'm ill. I am currently on meds to keep me awake during the day as I went into some type of narclopsey and lost a new job because of it. Oh, I sleep somewhat propped up and try to sleep on my side. Stomach no. No way I could do that with the mask. My ENT can't understand why I'm having to use such high pressures. So - that's my story. I'm going to hit submit now and if there are typos, my apologies.

Therapist wrote:You are having a tough time honey. I don't know what your pressure is now but I see when you first joined you said it was 22 cm. That can be very difficult to use the mask properly and prevent leaks at such a high pressure.

Have you tried sleeping on your sides or stomach to see if a lower pressure will work there? From your sleep study did you sleep much on your sides or stomach and was your AHI lower? What was your AHI when you were diagnosed?

Did the ENT who did your nasal surgery offer reasons for your sleep apnea? Did he mention large tongue, large soft palate, narrow jaw, obesity, or any other factors?

Do you mind saying how old you are and what your BMI is?

My prayers for you tonight,

T.

[/quote]

Thank you for the good summary of the situation. In order to get a subject line of "Clear Airway Apneas" I started another thread - viewtopic.php?f=1&t=75857

I think something can be done to greatly improve your situation and will continue to have you in my prayers.

-SWS · Post by **-SWS** » Mon Mar 19, 2012 8:50 am

Does Sleepyhead report Periodic Breathing (PB) statistics? Those PB numbers are important. If your PB numbers consistently run high, along with that high residual CA index, then your doctors probably should have attributed the extreme CPAP/BiPAP intolerance and that central dysregulation to CompSAS.

In summary: extreme intolerance, high PB rates, and high CA rates translate to likely CompSAS, which usually warrants an ASV trial.

Pugsy · Post by **Pugsy** » Mon Mar 19, 2012 9:01 am

So the nasal pillow masks aren't working so great? Are you waking up a lot from the leaks or mouth breathing? The reports that you are having trouble getting....are these the ones that are recent with the nasal pillows?

I responded in more detail in the thread that Therapist started about your problems. My thoughts about the trial with the nasal pillows was mainly so we could see if we can get you to sleep through the night without the leaks of a full face mask disrupting your sleep...worry about the mouth breathing if and when it presented its ugly face on the leak reports to a point that it needed to be worried about.

Main goal right now would be get you some sleep that is not fragmented for any reason first and foremost so that disruptive factor is removed from the equation. Your sleep is so fragile now that you are pretty much hitting your head against that old brick wall.

I don't know why when you first try something you appear to have success and then slide backwards.
Sure wish that I did know. If a mask wakes you a gazillion times for whatever reason... it isn't working.
The machine will pick up "events" scored during those awake times and really messes with the integrity of the reports. We don't know if you were awake or not so we don't know how much faith to put into those reports.

To SWS....yes SleepyHead reports Periodic Breathing. It is complicated though...if awake it will report it...so the irregular breathing while awake can be misinterpreted. It also will report PB that doesn't even come close to true CSR. I have seen it in person on my reports. I don't remember if OP here had a lot of PB on the reports that I have seen but I don't think there was a lot or I would have been leaning towards the ASV thing more than I am. I can't remember for sure though.

macewa · Post by **macewa** » Mon Mar 19, 2012 9:25 am

I would love for the nasal pillows to work - so much less stuff on my face. I am still trying to work with them. Seems that the air pressure going straight into my nose causes me to have more of that nose burning sensation and disturbs other mucus stuff in my nose. I so think having the air directly into my nose would make my therapy more effective. I tried them last night and lasted about an hour. But the strange thing is that the data from that time period was picked up on my card. I switched over to the total face mask and nothing was picked up from that. (I wore a silk type scarf over my head to help with the hair breakage and it also seemed to help stop leaks, but nothing was picked up by SleepyHead). During the hour on the nasal pillows I was half awake, half asleep. My AHI was 13.28, Hypopena 6.64, Clear Airway 5.53, No Periodic breathing and OAs were 1.11. Also with the nasal pillows, I am constantly having to open my mouth to exhale air and I'm sure that isn't good either. I am going to try the nasal pillows again. I suspect they would be more effective due to the air pressure going so directly into the nose and if I could deal with that, I might actuallly do better. With the total face mask you really don't get that same force while with the full face mask there is a bit more pressure, but still not the same as with the nasal pillows.

Pugsy wrote:So the nasal pillow masks aren't working so great? Are you waking up a lot from the leaks or mouth breathing? The reports that you are having trouble getting....are these the ones that are recent with the nasal pillows?

I responded in more detail in the thread that Therapist started about your problems. My thoughts about the trial with the nasal pillows was mainly so we could see if we can get you to sleep through the night without the leaks of a full face mask disrupting your sleep...worry about the mouth breathing if and when it presented its ugly face on the leak reports to a point that it needed to be worried about.

Main goal right now would be get you some sleep that is not fragmented for any reason first and foremost so that disruptive factor is removed from the equation. Your sleep is so fragile now that you are pretty much hitting your head against that old brick wall.

I don't know why when you first try something you appear to have success and then slide backwards.
Sure wish that I did know. If a mask wakes you a gazillion times for whatever reason... it isn't working.
The machine will pick up "events" scored during those awake times and really messes with the integrity of the reports. We don't know if you were awake or not so we don't know how much faith to put into those reports.

To SWS....yes SleepyHead reports Periodic Breathing. It is complicated though...if awake it will report it...so the irregular breathing while awake can be misinterpreted. It also will report PB that doesn't even come close to true CSR. I have seen it in person on my reports. I don't remember if OP here had a lot of PB on the reports that I have seen but I don't think there was a lot or I would have been leaning towards the ASV thing more than I am. I can't remember for sure though.

Pugsy · Post by **Pugsy** » Mon Mar 19, 2012 9:36 am

Chipmunk cheeks with nasal pillows? Air goes up the nose and tries to exit through the mouth, inflates cheeks...out mouth. Tongue placement is needed so the tongue blocks the air from entering the mouth.

What is your humidifier setting? Are you having congestion or runny nose with using the nasal pillows?
With the air going directly to nasal cavity..you might need more moisture or less. If things seems too dry..might increase the setting on humidifier a bit.

Unsure why no data after switching to the full face mask..that doesn't make any sense. Try this...put SD card back into the cpap machine...let it do its thing and when it is done..remove the SD card and try importing again to SleepyHead. Perhaps there was/is a bad file causing the lack of data for the time with the full face mask.

If you are awake or semi awake during the hour with the nasal pillows...we can't trust the reports to be accurate. The machine will pick up on irregular awake breathing and flag events by mistake. Especially the clear airway events.

-SWS · Post by **-SWS** » Mon Mar 19, 2012 9:44 am

Pugsy wrote: To SWS....yes SleepyHead reports Periodic Breathing. It is complicated though...if awake it will report it...so the irregular breathing while awake can be misinterpreted. It also will report PB that doesn't even come close to true CSR. I have seen it in person on my reports. I don't remember if OP here had a lot of PB on the reports that I have seen but I don't think there was a lot or I would have been leaning towards the ASV thing more than I am. I can't remember for sure though.

I looked up macewa's PB statistics. They are not too bad---usually under 5%.

Let's take a hypothetical CompSAS patient for a moment. The very CompSAS condition itself is what prevents consolidated sleep while attempting to use the machine. Those same patients are also more susceptible to central dysregulation during each wake/sleep trasition based on CO2 homeostasis instability.

So in CompSAS cases, there's often an inherent problem in saying "You need to sleep more on that machine so we can gain a better idea if you might have real CompSAS". Sometimes the CompSAS patients do sleep more on the machine, when machine intolerance is not as prominent. But machine intolerance is part-and-parcel to CompSAS, and some CompSAS patients present machine intolerance much more severely than others.

This many months into machine intolerance, incessant wake/sleep transitions, some PB and clear airway apneas, I think I'd ask the doctor for an ASV trial rather than attempt to better adapt to the machine for several more months.

Pugsy · Post by **Pugsy** » Mon Mar 19, 2012 9:48 am

-SWS wrote:This many months into machine intolerance, incessant wake/sleep transitions, some PB and clear airway apneas, I think I'd ask the doctor for an ASV trial rather than attempt to better adapt to the machine for several more months.

Very true.. There is a reason that the sleep doctor is not available though. I forget what it is.
So that is why I could only keep offering what I offered. Going with what was available. Not ideal but the best we could do.

-SWS · Post by **-SWS** » Mon Mar 19, 2012 9:54 am

Pugsy, you are one of my superstar heros. I'm coming to YOU when I need SDB advice.

Macewa, I'd at least ask the doctor about arranging an ASV trial.

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