Report From a Newbie AKA What Is The Point of That?

[Fvell]

Hi all,

Since the end of 2010 when my doctor first said that I should do some tests with a machine to see how I was sleeping, because this could be the root of my problems, I decided to go deep on this.

The first exam reported a severe apnea, something around 30 per hour. The doctor was expecting for some but not that much, so she asked me to do it again on another lab, the one she trust above all. I did it...and the result? Around 60 per hour (I’m not quite sure on these numbers cause I’m not with my exams here, will confirm later)! Then, I got to the Cpap exam. One night with this wind machine and the apneas were almost gone.

So, on may/2011 I started with a rent machine, a Resmed S9. Then, convinced by having the apneas under contol, and after some good research, I decided to buy an APAP, the Devilbiss Intellipap Autoadjust was my choice, which seems to me to be a great machine. On the beginning, I had some problem with the nasal mask, it was leaking to my eyes, what I was warned about how dangerous it could be. Also, the mask was hurting the top of my nose in a way that I got a mark for months there. So, I decided to try the nasal pillow mask and this was so much better than the other one. This is the mask I still use today.

Getting to the point. Over all these months I have been following my reports and my AHI and AI results are great. AI always below 5 per hour (usually between 1 and 2) and AHI around 5 (usually from 3 to 6). The thing is that I can’t see any change (for better) in my life. I’m using it every night and what I got is some pain in my neck and a mask in my face that limit my sleeping position. For someone with severe apnea I thought that using this machine after sometime would be like discovering what is a day after a real night of sleep. But, actually, sometimes I feel more tired, more sleepy…I don’t know. I mean, I never had any problem to fall asleep. I always slept like a baby. And, also, I never got sleepy during the day, never was a sleepy person, by the contrary. Is there something I’m missing? Am I doing something wrong? Is it normal? Some people already felt the same as me? Should I try it longer before I get to this kind of conclusion? Eight months is enough? Should I quit? With the mask I’m well used already, but if someone ask me, yes I would rather sleep without it.

Sorry for my english and thank you very much for reading this. People on this forum are very kind and supportive, this is very nice.

Fabio

[cindjo717]

Maybe there is something else going on with your body that is causing the sleepiness? I truly am surprised that you did not experience any daytime sleepiness with these numbers.... I had similar numbers and felt like crap...

[NightMonkey]

Fabio, Are you certain that the pressure is not leaking out your mouth? When the pressure is lost through the mouth the therapy is not effective.

Regarding sleeping positions, I can sleep on back, sides, or stomach with my mask. Have you thought through the sleeping positions and mask placement so that you are flexible at night?

Your English is fine.

[Pugsy]

Should I quit?

No. Having 60 events per hour prior to cpap therapy is not something you want to go back to.

Some people it simply takes a long time to notice any improvement. Some people never see much improvement.
Some people have other issues that impact how they feel the next day unrelated to sleep apnea.

When someone says they don't feel their good numbers we usually give some standard suggestions to look for besides the AHI.
Like..how many hours of sleep...is the sleep fragmented for any reason...any other health issues...pain...medications..bed comfort..bed pillow...etc.

Welcome to the forum. Don't give up just because you don't see the improvement you expected to see. Just like sleep apnea is a hidden killer...the benefits from not stopping breathing 60 times an hour are hidden also.
Your heart and other organs are benefiting even if you can't see or feel the benefit.

[cindjo717]

Well said Pugsy. Sleep Apnea the hidden killer, never thought of it like that... so true.

[Margaretm]

OP, have you had your oxygen levels tested? I'm not seeing much improvement with CPAP either, but my oxygen levels were low, too. get the results of an overnight oximeter test tomorrow.

Frankly, if they can't get me feeling better with CPAP or BiPAP, I will seriously consider stopping it. My CPAP educator said it will keep me alive longer but like I said to her - what's the point in being alive if I feel like crap all the time?

[Fvell]

Fabio, Are you certain that the pressure is not leaking out your mouth? When the pressure is lost through the mouth the therapy is not effective.

Regarding sleeping positions, I can sleep on back, sides, or stomach with my mask. Have you thought through the sleeping positions and mask placement so that you are flexible at night?

Your English is fine.

Nightmonkey,

I think you might have found the issue. Taking a look at my reports from august until now, my leak rate is around 30 to 40 L/min! It seems that I have to shut my mouth. Actually, somebody already said me that on this forum some months ago. I was completly forgetting the leaking problem. I hate the idea of taping my mouth so maybe I think I'll try a chin strap.

[NightMonkey]

Fabio, Are you certain that the pressure is not leaking out your mouth? When the pressure is lost through the mouth the therapy is not effective.

Regarding sleeping positions, I can sleep on back, sides, or stomach with my mask. Have you thought through the sleeping positions and mask placement so that you are flexible at night?

Your English is fine.

Nightmonkey,

I think you might have found the issue. Taking a look at my reports from august until now, my leak rate is around 30 to 40 L/min! It seems that I have to shut my mouth. Actually, somebody already said me that on this forum some months ago. I was completly forgetting the leaking problem. I hate the idea of taping my mouth so maybe I think I'll try a chin strap.

Also don't forget that a full face mask (FFM) is a good option for mouthbreathing. The full face mask will keep air pressure on the mouth when it opens and maintain good therapy. I use an FFM because my mouth will open for short times during the night.

Message to members: When we have a relatively new member using a nasal mask and having problems, the absolute first priority is to find out if he is mouthbreathing.

[Fvell]

OP, have you had your oxygen levels tested? I'm not seeing much improvement with CPAP either, but my oxygen levels were low, too. get the results of an overnight oximeter test tomorrow.

Frankly, if they can't get me feeling better with CPAP or BiPAP, I will seriously consider stopping it. My CPAP educator said it will keep me alive longer but like I said to her - what's the point in being alive if I feel like crap all the time?

Margaretm, this is one thing that I left behind and maybe I shouldn't have done that. I never did care about buying an oxymeter. Do you think that follow the oxygen levels could be an important add on?

[Fvell]

Should I quit?

No. Having 60 events per hour prior to cpap therapy is not something you want to go back to.

Some people it simply takes a long time to notice any improvement. Some people never see much improvement.
Some people have other issues that impact how they feel the next day unrelated to sleep apnea.

When someone says they don't feel their good numbers we usually give some standard suggestions to look for besides the AHI.
Like..how many hours of sleep...is the sleep fragmented for any reason...any other health issues...pain...medications..bed comfort..bed pillow...etc.

Welcome to the forum. Don't give up just because you don't see the improvement you expected to see. Just like sleep apnea is a hidden killer...the benefits from not stopping breathing 60 times an hour are hidden also.
Your heart and other organs are benefiting even if you can't see or feel the benefit.

Great! Thank you Pugsy. You are right, there are some things to consider before just giving it up. First, I should replace my mattress which has a hole on my side. Should check my pillow too, maybe it's not the ideal. Another thing is the mask. Never tried the fullface mask, maybe this coul help.

[Pugsy]

Taking a look at my reports from august until now, my leak rate is around 30 to 40 L/min!

I believe that the Intellipap machine reports TOTAL leak which includes mask normal intentional vent rate (which depends on mask type and pressure used). So we cannot compare this reported leak rate to say the ResMed machine's leak reporting which subtracts vent rate before reporting leak.

If my memory is correct DeVilbiss says it can compensate quite well for leaks up to the 90 L/min range or so.

So those of you jumping on the "leak is mouth breathing...losing therapy" band wagon you need to make a note of the machine being used. OP here will never ever have a zero leak rate report and likely never much below 30 due to the way the machine reports leak.

Now if OP is using a ResMed machine...whole different story. Resmed machines are the only ones that report only unintentional leak and go by the magic 24 L/min line. Other brands report total leak or let us adjust for total leak in the software settings. Intellipap doesn't let us adjust for vent rate other than mentally.

In this case with Intellipap use the leak is well within acceptable limits on paper. To know for sure if leak might be large for a short period of time and thus maybe impacting therapy during that time, we need to see the leak line and reports. I doubt it will show anything hugely remarkable given the overall average reported leak.

Is there a mouth breathing problem? Who knows without looking at the graphs but I seriously doubt it is serious enough to impact therapy to any great extent with a Total Leak report being in the neighborhood of vent rate.

Message to members: When we have a relatively new member using a nasal mask and having problems, the absolute first priority is to find out if he is mouthbreathing.

Might want to look at machine used and make sure that reported leak is appropriate for specific brand of machine and not assume that everyone goes by ResMed standards.

[Fvell]

Taking a look at my reports from august until now, my leak rate is around 30 to 40 L/min!

I believe that the Intellipap machine reports TOTAL leak which includes mask normal intentional vent rate (which depends on mask type and pressure used). So we cannot compare this reported leak rate to say the ResMed machine's leak reporting which subtracts vent rate before reporting leak.

If my memory is correct DeVilbiss says it can compensate quite well for leaks up to the 90 L/min range or so.

So those of you jumping on the "leak is mouth breathing...losing therapy" band wagon you need to make a note of the machine being used. OP here will never ever have a zero leak rate report and likely never much below 30 due to the way the machine reports leak.

Now if OP is using a ResMed machine...whole different story. Resmed machines are the only ones that report only unintentional leak and go by the magic 24 L/min line. Other brands report total leak or let us adjust for total leak in the software settings. Intellipap doesn't let us adjust for vent rate other than mentally.

In this case with Intellipap use the leak is well within acceptable limits on paper. To know for sure if leak might be large for a short period of time and thus maybe impacting therapy during that time, we need to see the leak line and reports. I doubt it will show anything hugely remarkable given the overall average reported leak.

Is there a mouth breathing problem? Who knows without looking at the graphs but I seriously doubt it is serious enough to impact therapy to any great extent with a Total Leak report being in the neighborhood of vent rate.

Message to members: When we have a relatively new member using a nasal mask and having problems, the absolute first priority is to find out if he is mouthbreathing.

Might want to look at machine used and make sure that reported leak is appropriate for specific brand of machine and not assume that everyone goes by ResMed standards.

Wow! That changes everything. I didn't know about that and my mask has in fact a good intentional vent rate. At least it's what I feel when I put my hand in front of it. And my wife use to say that I'm saving her sleep with the Apap. According to her, when I don't use it I go back to snoring out loud. On the other hand, using the Apap the only thing she hear is that soft noise of the ventilation.

[Pugsy]

First, I should replace my mattress which has a hole on my side. Should check my pillow too, maybe it's not the ideal. Another thing is the mask. Never tried the fullface mask, maybe this coul help.

I don't think a full face mask is needed based on the leak rate you reported. I don't think mouth breathing is your problem. Full face masks open up a whole new set of problems in regards to comfort, fit and seal.
If you feel you are sleeping well with current mask and still fill less than optimal, I don't think changing to full face mask will make you feel hugely better.

Lots of things impact the restorative powers of sleep besides OSA. If your mattress is less than comfortable even if you didn't have OSA there is a good chance that you would still feel awful the next day because you aren't getting good restful sleep.

On paper (based on your comments about your reports) the OSA is effectively treated. On paper doesn't always translate to real life feelings though. Good numbers don't guarantee good feelings. Sure wish they did because I had great numbers for a long time but didn't feel the greatest. For me it was fragmented sleep (due to pain) and hours of sleep (6 to maybe 7 hours). I had to try different things to help with the pain and even meds to limit the fragmented sleep (every movement in bed would hurt and wake me up). It took a lot of whittling away at the problem to get to where I felt better overall.

So try to figure out what things outside OSA needs to be worked on. Mattress with a hole in it would sure be uncomfortable and not let the body rest "well". Same thing with whatever bed pillow you use. Need an extra hour of sleep? Try getting more rest. Wake up often? Try to figure out why and fix it.

Finally, sometimes we just don't have any clear cut answers but we know that at least the damage being done without treatment is stopped with effective treatment (on paper). If nothing else look at it with "preventative" attitude while crossing our fingers waiting on feeling hugely better during the day. Preventing that stroke or heart attack or other damage being done to the body if we didn't wear the mask and use the machine.

[Emilia]

I'd be interested in seeing a data report. The SmartLink will also show your exhale puffs and NRI events. According to the DeVilbiss literature,

Expiratory Puffs
EPI, unique to DeVilbiss AutoAdjust devices, is provided as a number and as a graph. Exhale puffs are a breathing pattern described as ‘in through the nose and out through the lips’. EPI is the number of exhale puff events detected per hour. If exhale puffs are present in significant numbers, the AutoAdjust algorithm will prevent the pressure from increasing because an increase in the pressure will create more exhale puffs in a patient with obstructive sleep apnea.

Non-Responding Event Index (NRI)
NRI is provided as a number and as a graph. The NRI includes all the non-responding events considered by the AutoAdjust PAP: leaks, non-obstructive apneas, and exhale puffs. The NRI is the average number of non-responding events per hour. If the number is higher than 10, the patient may be exhibiting primary central apneas and need clinical intervention.
NOTE: If non-responding events are present, the algorithm prevents a further increase in pressure because increasing the pressure in the presence of these events is thought to produce central apneas which could be detrimental to a patient with obstructive sleep apnea.3

Ideally, your AHI should be lower than 5. I maintain a consistent average AHI of 1.5 with some nights below 1.0. I'd consider that you may be losing therapy via your mouth as your leaks are well within the acceptable limits. It is probably minor but cumulative... leading to not feeling great upon waking. Regardless, you are getting therapy, your results aren't bad, and whether you know it or not, you are healing and helping your body in many ways.

You could explore a FFM or a hybrid to see if you feel better with either mask. If your DME isn't generous with loaners, consider Dane's mask tryout at cpaplibrary.com You can borrow a mask for a week and only pay for S&H both ways.

[NightMonkey]

Message to members: When we have a relatively new member using a nasal mask and having problems, the absolute first priority is to find out if he is mouthbreathing.

Might want to look at machine used and make sure that reported leak is appropriate for specific brand of machine and not assume that everyone goes by ResMed standards.