Please help

araris · Post by **araris** » Sun Nov 02, 2014 6:33 am

Will someone look at my data and tell me if they see anything that could help me. My dr. has never once looked at my data.

I've been a member here for about a year. I've struggled with my cpap therarpy. I am compliant but I want to feel better on most days, and I simply don't.

Real quick info:
I was initially prescribed a pressure of 10 and I could't tolerate it because of Aephageria ( gas). My Dr. lowered pressure to 8, and with that I've kept my ahi under 5 but still didn't feel any better. On the rare occasion I had an ahi under two I felt amazing throughout the day. I finally decided to move pressure back to 10 and and I found the my AHI stayed under 2. With moving it back to ten, I started getting the excruciating gas again. I was feeling really good during the day, but still had to wake up a few times during the night to relieve the pressure. And when I got up in the morning more often than not my belly was so full of gas I would have to stay hunched over. It was like I had swallowed a balloon that wouldn't move out of my stomach, and would stay there for a couple hours.
I called the dr. back up and he prescribed an apap. However, now I wake up 20 to 30 times night and am dead tired again even though my AHI is under two and the gas is much more tolerable.

Any suggestions or help would be appreciated.

Here is some of my data. I can post more if someone tells me what to put in this foder

https://drive.google.com/folderview?id= ... sp=sharing

Julie · Post by **Julie** » Sun Nov 02, 2014 6:35 am

What mask do you wear?

zoocrewphoto · Post by **zoocrewphoto** » Sun Nov 02, 2014 6:53 am

The photos are tiny, so we can't see any details.

Do you feel like the changes in pressure are disturbing your sleep? Some people are very sensitive to the changes and just don't do well in auto mode. I sleep through all the changes in pressure, but the tiniest leak wakes me up.

Are you using any pressure relief when you exhale? That may allow you to do a straight pressure at the higher pressure without so much aerophagia.

Can you tell from your data if you are having clusters of events or longer events? My mom had an ahi of 3.4 with her old machine at straight 10, but she was having clusters of longer events, some over a minute long.

araris · Post by **araris** » Sun Nov 02, 2014 7:03 am

Are you able to click on the pictures to make them bigger? I can do it from my end.

I'm not certain how to tell if I am having clusters. Can you explain how I can tell. I know that when (if I am reading it correctly) I am having a hypopnea they can last up to a minute.

araris · Post by **araris** » Sun Nov 02, 2014 7:07 am

zoocrewphoto wrote:The photos are tiny, so we can't see any details.

Do you feel like the changes in pressure are disturbing your sleep? Some people are very sensitive to the changes and just don't do well in auto mode. I sleep through all the changes in pressure, but the tiniest leak wakes me up.

Are you using any pressure relief when you exhale? That may allow you to do a straight pressure at the higher pressure without so much aerophagia.

Can you tell from your data if you are having clusters of events or longer events? My mom had an ahi of 3.4 with her old machine at straight 10, but she was having clusters of longer events, some over a minute long.

I'm not certain if its the change in pressure or not. I guess I'm going to go back to a straight pressure of 10 again tonight... but I know I'll have bad gas. Last night I adjusted my setting to 9-12 and I woke up with extreme gas. My AHI was over 3 for the first time in a long time as well.

I switched to a nasal wisp when I got the apap last month, but the last couple of days I have been using my full fighter pilot mask. its a simplus something...

I am not using the a flex or cflex because whenn I do use them my ahi is much higher.

zoocrewphoto · Post by **zoocrewphoto** » Sun Nov 02, 2014 7:10 am

araris wrote:Are you able to click on the pictures to make them bigger? I can do it from my end.

I'm not certain how to tell if I am having clusters. Can you explain how I can tell. I know that when (if I am reading it correctly) I am having a hypopnea they can last up to a minute.

Nothing happened when I clicked on them. If I right clicked and chose view image, it loaded in a new window at the same tiny size. I tried copying it and opening it in photoshop. It was blurry when i tried to enlarge it.

zoocrewphoto · Post by **zoocrewphoto** » Sun Nov 02, 2014 7:13 am

araris wrote:
zoocrewphoto wrote:The photos are tiny, so we can't see any details.

Do you feel like the changes in pressure are disturbing your sleep? Some people are very sensitive to the changes and just don't do well in auto mode. I sleep through all the changes in pressure, but the tiniest leak wakes me up.

Are you using any pressure relief when you exhale? That may allow you to do a straight pressure at the higher pressure without so much aerophagia.

Can you tell from your data if you are having clusters of events or longer events? My mom had an ahi of 3.4 with her old machine at straight 10, but she was having clusters of longer events, some over a minute long.
I'm not certain if its the change in pressure or not. I guess I'm going to go back to a straight pressure of 10 again tonight... but I know I'll have bad gas. Last night I adjusted my setting to 9-12 and I woke up with extreme gas. My AHI was over 3 for the first time in a long time as well.

I switched to a nasal wisp when I got the apap last month, but the last couple of days I have been using my full fighter pilot mask. its a simplus something...

I am not using the a flex or cflex because whenn I do use them my ahi is much higher.

Have you already tried the cflex with the 9-12 pressure? Have you tried the cflex at different settings? Your machine is different from mine, so I'm not sure exactly how to work with your settings. Also, have you tried 9-11? Maybe that would still help you with the ahi, but not quite so much gas. I'm sure Pugsy will come along soon and give you better suggestions, especially with your specific machine.

araris · Post by **araris** » Sun Nov 02, 2014 7:26 am

As soon as I have access to a computer again I'll see if I can fix it.

Pugsy · Post by **Pugsy** » Sun Nov 02, 2014 7:54 am

I was able to view the images.
There's nothing there that is screaming out "fix me".
Leaks are minimal. Average hours of use is around 7.
AHI is acceptable and there's no real clustering pattern that I could see that might be something to work on.

I would suggest using AFlex and see if the exhale relief and drop in pressure during enables you to make use of the pressure range that allows you to maybe use the higher pressure without the aerophagia issues.
It's not a huge amount of reduction but it is some reduction....at the AFlex setting of 3 the most reduction that is possible is 2 cm and that depends on the force of your own breathing.

That said....when we see good reports and someone isn't feeling those good reports then we need to look for possible other culprits.
Meds..what meds do you take
Pain
Health issues
Insomnia..problems going to sleep or staying asleep?
Hours of sleep...I see the average of 7 or so hours...do you wake up much during those hours?

It may be that you would benefit from a bilevel pressure machine due to the aerophagia issues.

araris · Post by **araris** » Sun Nov 02, 2014 8:52 am

Pugsy wrote:I was able to view the images.
There's nothing there that is screaming out "fix me".
Leaks are minimal. Average hours of use is around 7.
AHI is acceptable and there's no real clustering pattern that I could see that might be something to work on.

I would suggest using AFlex and see if the exhale relief and drop in pressure during enables you to make use of the pressure range that allows you to maybe use the higher pressure without the aerophagia issues.
It's not a huge amount of reduction but it is some reduction....at the AFlex setting of 3 the most reduction that is possible is 2 cm and that depends on the force of your own breathing.

That said....when we see good reports and someone isn't feeling those good reports then we need to look for possible other culprits.
Meds..what meds do you take I'm supposed to on a statin, but I dont take it, because of issues with the drug, I take modafinil @ 200mg early in the morining if I feel I can't make it through the day. The issue with that though is that it doesn't work as well as it used to.
Pain ( Recently I have had some back pain, but its rare, for my and goes away in short time.
Health issuesI have high cholesterol, but am otherwise healthy. I'm a little overweight. 6ft 210 I've gained weight since starting cpap
Insomnia..problems going to sleep or staying asleep?I have had trouble staying asleep. I assume that that is either form the gas pain or maybe from the pressure changes
Hours of sleep...I see the average of 7 or so hours...do you wake up much during those hours?I wake up often, I can't remeber a time when I don't remember waking up several times a night.

It may be that you would benefit from a bilevel pressure machine due to the aerophagia issues.I just got a new apap(Insurance provided) How can I convince my dr to get me a bipap machine

araris · Post by **araris** » Sun Nov 02, 2014 8:58 am

At this point I'm willing to try anything to feel good on a regular basis.

I see if an aflex setting of 3 and a straight pressure of 10 will help me. Thanks Pugsy.

I might see about switching my Sleep Dr. as well. Does anyone know a good seelp doc in the Central Ohio area? I really like my dr. he is personable and friendly but he never looks at my data and just wants me to take modafinil for sleepiness. He also told me that you can't build up a tolerance to modafinil, but I know for a fact I have. It just does not work as effectively as it used to. I 'd prefer not to take any drugs whatsoever.

Pugsy · Post by **Pugsy** » Sun Nov 02, 2014 10:10 am

You can't use AFlex at fixed cpap pressures but you can use apap mode made to work like cpap mode.
Just use minimum of 10 and maximum set at 10....then AFlex will be available plus we don't lose any potential FL flagging. CPAP mode turns off FL flagging so we don't know if you didn't have any or you had some and the machine didn't flag them. For that reason I prefer to keep the machine in APAP mode but use minimum to equal maximum so it mimics cpap mode.

How to get a bilevel machine in your situation and have insurance pay for it...make LOTS of loud noise about how intolerable the aerophagia is at the pressure that allows you to feel the best...and at pressures where the aerophagia issues aren't present you feel like crap. Your doctor has to be the starting point..DME can't do anything about it without doctor ordering it and insurance won't pay unless your doctor goes to bat for you and documents that cpap isn't working due to aerophagia. It all starts with the doctor.

Or do like I did and buy one on the secondary market and bypass all that hassle.
Will it help you? Bilevel would allow a greater PS and the greater the PS the better chance of the aerophagia being prevented. The 2 you might get with AFlex (and it depends on the force of your own breathing and if you are a shallow breather you won't get the full 2 cm) may not be enough to ward off aerophagia.
It is worth a try now though. The "up to 2 cm" thing isn't mentioned here but is mentioned in the provider or user manual (I forget which).
http://aflex.respironics.com/

You do need to keep it in apap mode though...so you can get AFlex and utilize that up to 2 cm...I didn't see it mentioned for CFlex I don't think. It's been a while since I read that page.
We want APAP mode for the FL flags anyway.

kteague · Post by **kteague** » Sun Nov 02, 2014 1:27 pm

While you are working toward settings that both control your apneas and allow you to sleep comfortably, just wondering if there's any other contributors. Are you on any meds or supplements that could be disrupting your sleep? Is there any reason to think limb movements could be an issue, like do you move a lot during sleep?

araris · Post by **araris** » Sun Nov 02, 2014 1:44 pm

kteague wrote:While you are working toward settings that both control your apneas and allow you to sleep comfortably, just wondering if there's any other contributors. Are you on any meds or supplements that could be disrupting your sleep? Is there any reason to think limb movements could be an issue, like do you move a lot during sleep?

No not really I move from side to side to back but limbs don't really move that I'm aware of

No meds. Supposed y to be on a statin but I don't use it because of issues with the med

archangle · Post by **archangle** » Mon Nov 03, 2014 1:12 am

There's a youtube video in the links in my signature line for a trick to help prevent aerophagia. Some people find it helps.

Please help

Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help

Re: Please help