Confused and frustrated with CPAP

I started cpap on July 2 2015, used a variety of masks (full face and nasal pillow) with my Resmed A10 w/heated humidifier. I FEEL NO BETTER after 8 weeks of good numbers on the ResMed MyAir site (corresponding numbers on SleepyHead). I don't feel refreshed when I wake up, no more energy, gaining weight, nasal problems, dry mouth, leaking masks wake me up etc. I did stop snoring!

I have concerns about my sleep testing, the results reported 33 events per hour (none woke me up and I was not restless during the test). After the first night and subsequent nights of cpap treatments my numbers average around 0.3 events per hour, most not obstructive. The great difference makes me suspecious of the sleep testing results. I asked the sleep doctor at my follow up and he could not explain the large difference in numbers or the lack of results. His final recommendation was keep it up.

I don't know what to do at this point and ready to just stop the treatments all together.

Thanks for listening. If I violated some forum rules or protocol, sorry.
Mike

ResMed A10 auto set, pressure 12, heated humidifier , set to 4
ResMed AirFit P10
Chin Strap ( I am a mouth breather)
Average night time useage 7.5 hours
Leakage is under the max limits

The AHI reported by your machine is RESIDUAL, untreated events--very good numbers.
Not everyone has immediate results, but in your case, we know the apnea is under control.
33 events an hour is pretty nasty, and could lead to serious health problems, if untreated.

As chunkyfrog has mentioned, your low score now is because you're being treated - that's the difference between using the machine and not using the machine. If you stop using the machine, your AHI is not going to be at 0.3. It's going to be at 33.

What are your pressure settings?

What are your pressure settings?

Already mentioned but EPR (if used is absent).

mal59 wrote:ResMed A10 auto set, pressure 12

mal59 wrote: I have concerns about my sleep testing, the results reported 33 events per hour (none woke me up and I was not restless during the test). After the first night and subsequent nights of cpap treatments my numbers average around 0.3 events per hour, most not obstructive.

What the machine reports are events that slipped past the defenses. We have no way to know how many events were actually prevented from happening.

mal59 wrote:good numbers on the ResMed MyAir site (corresponding numbers on SleepyHead). I don't feel refreshed when I wake up, no more energy, gaining weight, nasal problems, dry mouth, leaking masks wake me up etc. I did stop snoring!

So good numbers in terms of AHI and you say leaks weren't huge
but...you say leaks wake you up and you are having dry mouth so some mouth breathing is likely going on.
Now it may or may not be enough leak to negatively impact the therapy pressure itself but it for sure is negatively impacting your sleep quality and any leak (no matter how tiny) that wakes us up and disturbs our sleep needs to be worked on because it is messing with our sleep.

So some detective work is in order.
How many hours of sleep are you averaging...be honest.
Are those hours of sleep fragmented with multiple wake ups? You already said leaks wake you up so how many times and any other reason for the wake ups?.....and how many wake ups do you think you remember?
Do you take any meds of any kind? If so, what are they?
Do you have any other health issues....pain, arthritis, diabetes, high blood pressure...any other physical or mental health issue?

There's so much more to feeling better than just a nice low AHI...despite what we expect.

Get SleepyHead software...see the top thread in the Announcements section of main forum page...and read this
https://sleep.tnet.com/resources/sleepyhead
and this https://sleep.tnet.com/resources/sleepyhead/shorganize

So let's start the detective work and make sure the therapy is indeed optimal (that's what we need the software for)..
and answer all the above questions I posted...the answers are very important part of the evaluation process.

Julie wrote:What are your pressure settings?

Looks like it's set to straight 12 cm.

ResMed A10 auto set, pressure 12, heated humidifier , set to 4
ResMed AirFit P10
Chin Strap ( I am a mouth breather)
Average night time useage 7.5 hours
Leakage is under the max limits

Den

.

I don't know how you're managing to breathe with a nasal mask and chin strap if you're a mouth breather. Chin straps are for people who can nose breathe but the bottom jaw needs a bit of support when they are relaxed (asleep). So first of all I think you have the wrong type of mask. Can you try a different FFM than the one you've already tried? What was the problem with it.? Have you had a sleep study on CPAP to check efficacy properly? If a patient of mine is still symptomatic despite having an improved AHI on CPAP I investigate further with a detailed sleep study on CPAP.

Do you have an heart problems? Some people have 'central' sleep apnoea, where the brain doesn't regulate your breathing properly and there are pauses in your breathing. This needs to be ruled out in your case if you've no improvement in your symptoms, by way of a detailed sleep study on CPAP. You could well have a mix of central and obstructive sleep apnoea.

CPAP Expert wrote:I don't know how you're managing to breathe with a nasal mask and chin strap if you're a mouth breather. Chin straps are for people who can nose breathe but the bottom jaw needs a bit of support when they are relaxed (asleep). So first of all I think you have the wrong type of mask. Can you try a different FFM than the one you've already tried? What was the problem with it.? Have you had a sleep study on CPAP to check efficacy properly? If a patient of mine is still symptomatic despite having an improved AHI on CPAP I investigate further with a detailed sleep study on CPAP.

For most a chinstrap is less than effective. Do you think everyone should have a FF mask first to insure pressure to hold the airway open, by-passing one obstacle in treatment, I do.

Instead many that mouthbreath are given nasal masks, and pushed out the door to fail treatment. Get the Money and Run! Everyone should have a full data APAP even if APAP isn't used, they can be used in CPAP mode, it's all about options. The real time cost is null, compared to the costs from the damage of failed treatment.

Learn how XPAP treatment works, get the software to read the data, maximize your treatment. Jim

I've been on this thing almost 5 weeks so I'm a newbie like you are. The first 5 days or so were pure hell. But after that, I started sleeping well with it and now I only wake up once maybe twice, and my AHI is always low, usually between 1.5 - 0.5. The higher is when spend some time on my back. I have not woke up with some burst of energy yet. Not in the morning, not during the day. I do notice some improvement in focus, a lot in irritability, and I no longer snore (per my wife). But, for me, I did not get some burst of energy. That being said, I do have a vitamin D deficiency I'm working on and that deficiency causes fatigue. So, I'd recommend considering other factors (D not being the only one, see Pugsy's response).

As for the leaks, dry mouth, etc. Here are my newbie experiences that might or might not help, just things to consider. I use the FFM. It really needs to be fit right. Too loose is obvious. But, too tight is bad too. You need that soft edging to "inflate" when the machine comes on. It allows for a more contoured seal around your face and provides some give when you move, and as your face changes as you sleep. I'd also recommend adjusting it while your laying in your most common sleeping position.

Dry mouth. I'm a mouth breather about 50-60% of the time. I've been working on techniques I've learned here to reduce that, but I have sinus issues that cause me to mouth breath at times. So, I try to stay hydrated during the day. At night, I use biotene gel. You can find it near the toothpaste at walmart or any of it's cousins. It doesn't eliminate but reduces quite a bit. I also apply some chapstick. I dont know if this does anything or if its just my imagination but it seems to help as well. Finally, try some minor adjustments to your humidity. I can't say more or less, it will just depend on you, but adjusting mine helped that as well. I'd make them small adjustments at a time. Also, use the search box up top and search for dry mouth and you'll other suggestions that have worked for people. I've tried things here that have worked, and others that haven't. But through trial and error I've narrowed things down fairly well.

You're in the right place. Lots of good info and help here. Good luck

I feel for those of you who aren't getting the appropriate support required for settling onto CPAP. I work in the NHS and we problem solve for the patient rather than the patient having to find out for themselves what works for them. I disagree that everyone should start with a FFM. They are large and claustrophobic for some people. Mask type should be selected by an experienced member of staff, an 'expert' in their field. There is no such thing as 'one size fits all' when it comes to CPAP masks.

An 'expert' can suggest different masks, but until the patient tries them on, lying down, and finds out if it's comfortable or not and whether leaks are likely, a decision shouldn't be made just on the expert's opinion.

An expert only asks questions and only has the patient's answers to go on. A patient may not know he/she is a mouth-breather, or may be unaware of any potential problems while sleeping. I agree with Julie that the only way to fit a mask is to try it on, lying down, under full pressure. A patient will have to learn through trial and error what mask style works best.

I wanted to second what Julie and Mohm's said.

A very willing and helpful daytime sleep tech fitted me with a mask that seemed very comfortable when I had it on for a few minutes. Unfortunately, when I tried it at home for a longer period, it became intolerable. My face seems to only like the cloth mask so far.

49er wrote:I wanted to second what Julie and Mohm's said.

A very willing and helpful daytime sleep tech fitted me with a mask that seemed very comfortable when I had it on for a few minutes. Unfortunately, when I tried it at home for a longer period, it became intolerable. My face seems to only like the cloth mask so far.

I would take it even a bit further. I used the Wisp for my titration study and loved it. After a couple nights I started to get a pressure sore and within a week it had broken open. And, perhaps because I'm not a mouth breather?, I don't get good results with FFMs. It takes time and trial.