No motivation to continue therapy

[BlackSpinner]

Have you worn it while watching tv to get really used to it?

I don't own a TV Also, the Mirage mask doesn't allow me to wear glasses, and I have very poor vision without them. The new AirFit does allow for glasses. As far as desensitizing goes, It's no so much physical discomfort as it is psychological. I can't bear to see myself wearing it. Even looking at advertising photos of models with masks on gives me the creeps.

Psychological discomfort is super big a reason to wear it while doing something interesting, you want your subconscious to get used to the idea that this is a safe and ordinary thing and the best way is to wear it while doing something interesting. If you don't have tv, you have a computer. You can watch a movie, play a video game, do some art work, knit a sweater. Most peoples physical discomfort is purely psychological.

[Vexations]

Might also take a look at your bed pillow and mask combination.

I'm about to start with a new mask. I have a CPAPmax CPAP Pillow. I sleep on my side, and the pillow seems to leave enough space for the mask. Perhaps the height is an issue.

Your large leak number to avoid is 60 L/min.
[...]
How far above we can't tell from this little piece of data. Using SleepyHead software would help you determine how far you went.

I got sleepyhead to run, and I can't quite reconcile what it gives me with what I see in the F&P INFOSMART report. I'll see if I can figure out what's missing there. I do see Leak Rate occasionally go well over 60, up to 105 on some daily reports.

[Wulfman...]

I'm new to the forum. Apologies if this is a topic that has been covered. I've looked for relevant threads but didn't find anything. I've been diagnosed with "severe" OSA in January and have been using a machine since February. I have never known I had OSA until I was diagnosed. I had not experienced daytime sleepiness or fatigue, or never thought of how I felt in those terms anyway. Since I've started therapy, I have not noticed any of the promised improvements. I do not feel more rested, my mood has not improved, and even my partner (who is very supportive and wants me to continue treatment) has said that my snoring is less annoying than my messing around with the hose and mask at night. Wearing the mask makes me claustrophobic, I have now nightmares ( I dream of snakes a lot), and sleep far less than I used to. I now get perhaps 3 or 4 hours of sleep in stead of 7 or 8. Since increasing the pressure from 8 to 10 cm h20, I have been having crippling headaches that last several hours each morning. I don't get headaches when I do not use the machine. I've been non-compliant this August and September. I was outdoors camping and hiking and felt much better. This last weekend, when I tried using the machine again, my headache lasted the entire day. I don't feel better with therapy; I feel worse. I have no motivation to continue, other than that I believe my doctor when he says that I'm at increased risk for cardiac disease and stroke.

I want to have a conversation with my doctor that gets me a form of therapy that works and is tolerable. I have already told him I don't see any improvements, and he has made it clear that noncompliance is not an option. From what I've been reading so far, I got the impression that most people notice significant improvements, and it did not take very long, a few weeks perhaps, for them to feel better. Does this group have any ideas why this isn't happening for me? What questions should I ask my doctor?

Sounds like your therapy is ineffective. Maybe your settings aren't right. Maybe you're leaking your therapy air out of your mouth during the night (it appears you're using a nasal mask). Maybe you need a different machine. Or, a different bed pillow.

With all the things you've listed throughout this thread, I'd THINK you'd be able to find some motivation in there somewhere.
The sooner you take full control of your therapy and not rely on the doctors, the sooner you'll see some improvement.


Den

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[Pugsy]

I do see Leak Rate occasionally go well over 60, up to 105 on some daily reports.

The machine will record the time in large leak (over 60 L/min) and unless you spend a LOT of time in really big leaks (like that 100 L/min) it isn't going to impact the AHI all that much.
Most likely what would happen if you spent much time at 100 L/min is the machine would maybe miss some apnea events because the leaks were so bad it couldn't sense them happening so wouldn't flag them...might give you a false low AHI BUT that would be ONLY for the time in large leak and not the entire night.

For simplicity let's use 20% of the time in large leak and 8 hours of therapy.
20% of 8 hours is 96 minutes. So for those 96 minutes the AHI MIGHT not be accurate...it all depends on how big the leak was...if it was just 70 L/min probably wouldn't miss any events...if it was 110 L/min there's a good chance it missed some but only for when it was that high.

The other 6 1/2 hours of therapy the AHI is accurate. Unless the machine missed a truck load of events (depends on what your AHI was without therapy) the AHI wouldn't be hugely inaccurate from just 90 minutes in large leak out of 8 hours.
It's the law of numbers thing.

We still want to limit time in large leak for any number of reasons and being able to trust the AHI is one of those reasons.
But it's not like the entire night's therapy is in the toilet just because of 90 minutes in large leak...the AHI for the other parts of the night can be trusted.

That said...just having that much leak can disturb sleep quality and make it feel like entire night's therapy was in the toilet. There's so much more to this therapy than just getting a flat zero excess leak or a nice low AHI number.
Gotta factor in hours of sleep....are those hours of sleep fragmented with wake ups...do we take any meds that might be a factor...do we have issues with pain or insomnia or other health conditions.

I wish it was so easy...just get a nice low AHI and don't have any leaks and we all feel the "miracle" and think cpap therapy is the greatest thing since sliced bread. For a few lucky people it is easy but for most of us it is not so easy and it takes a lot of work and often we have other issues that affect how we feel that the machine can't fix. Not all the problems we can have are caused from sleep apnea alone and the machine can't fix what isn't related to sleep apnea...no matter how much we want it to.

[Vexations]

I appreciate all the helpful responses. Thanks everyone. I'm still unclear about not seeing any tangible improvements. Are there other people who also do not notice any benefits of treatment?

[Wulfman...]

I appreciate all the helpful responses. Thanks everyone. I'm still unclear about not seeing any tangible improvements. Are there other people who also do not notice any benefits of treatment?

Lots of them. Then they find this forum, take control of their own therapy and start seeing improvements and benefits.


Den

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[RogerSC]

I appreciate all the helpful responses. Thanks everyone. I'm still unclear about not seeing any tangible improvements. Are there other people who also do not notice any benefits of treatment?

I'd suggest that you direct your energy towards sharing your sleep data with people here who could potentially help you get your therapy working. You're using a cpap, why not do what you can to maximize its benefit? Spending time finding others that are as bad off and puzzled as you isn't really going to get you anywhere, other than a group to commiserate with, not much fun at all.

Just a thought.

[BlackSpinner]

I appreciate all the helpful responses. Thanks everyone. I'm still unclear about not seeing any tangible improvements. Are there other people who also do not notice any benefits of treatment?

A lot of people who have answered have had issues and are advising you. Don't focus on the negatives. Focus on the fact that you found a forum with people who will help you over come this.

The biggest tangible improvement is the fact that you probably won't have a stroke soon and your partner will not be changing your shitty diapers, which is huge. I have been doing this for my mother for the last 2 1/2 years. You know what the best thing is about the Friday respite care? It is that I can eat supper without the smell of poop, because it never fails that when I am eating lunch or supper the diaper needs to be dealt with.

[Pugsy]

Are there other people who also do not notice any benefits of treatment?

Sure.
For long time I only saw the improvement of having to get up and pee every hour on the hour and the reduction in oxygen starvation headaches as being my only improvement. Not everyone has those symptoms for them to go away.

It took several months to get to where my energy levels were picking up and I was sleeping more than 4 or 5 hours a day.

Even if I didn't "see/feel" any improvements.....I know that my oxygen levels dropping so low was/would eventually cause me some serious issues. The body can only take so much damage before it starts to have things fail.
I would have continued to use cpap as "preventative" measure.

If you don't want to continue therapy because you don't/haven't experience the miracle you read about then that is your choice. We are here to help if you want help to try to get that "miracle" which is very elusive. If you want an excuse to give up...we aren't so good at doing that.

[raftergirl]

One other thing that no one has mentioned is aromatherapy. I've been trying the Pur Sleep products for the past week, and I'm able to relax and fall asleep a little faster. Look at the Pur Sleep website, as it talks about desensitization with aromatherapy. If you already have some essential oils that you like, put a drop on a cotton ball and set it in front of the air intake on your machine. See if that helps. I work in a hospital that has an active integrative medicine program, and they use aromatherapy with our patients for relaxation all the time.

[bpvegas]

As a newbie myself ... Just 3 nights down ... I'd have to agree with the Pur-Sleep suggestion. I started using it on day-1 and do believe it helps me relax.

I would also suggest that you consider changing your ramp settings if you're going to continue to use it. I tried it the first night and hated it. I changed the starting ramp pressure from 4 to 6 and it helped. I felt like I was suffocating with a setting of 4.

I've gained a lot of knowledge reading topics here and there are a lot of folks here that are willing to help.

[Vexations]

One other thing that no one has mentioned is aromatherapy. I've been trying the Pur Sleep products for the past week, and I'm able to relax and fall asleep a little faster. [..]

Thanks for the suggestion; it may help someone else. My partner is extremely sensitive to fragrances and volatile organic compounds. I can't use anything that is scented.

[MotorChris]

I am brand new just diagnosed ten days to 2 weeks ago

.... The claustrophobia was killing me also, I found that if I sleep with a fan blowing on my face that feeling
went away..

Also I found out the mask was too tight.... needs to kinda air float (the cushions inflate when adjusted right)..
Thanks to the forum I found this out... I am doing so much better.... went from a AHI of over 60 to now mostly under 5..

I was diagnosed with a home study with an AHI of 62, my 02 going as low as 67% during the night...

BTW I am 51 and most likely had apnea since in my twenties or before...

If your not using the sleepyhead software to monitor your progress... your really not giving it a fair shot,
I found if I sleep on my back my AHI (average times an hour I stop breathing), skyrockets even with the machine..
30-60 times an hour... I am still waking up about every three hours ... I am thinking this has to do with the REM
sleep cycle...... but I am starting to feel so much better, muscle strength is coming back similar to when I was in
My twenties..... I am devoting time and experimentation, research, started writing in the notes section of sleepyhead each morning,
writing down and looking at the data, how I felt, if the mask was leaking, what position I was sleeping in. if my mouth was
dry, (was the humidifier out of water, Duh) .....

I found out I had forgotten what it felt like to be rested... I had apnea so long, how I felt was "Normal"

I found I am getting repaid 100x over for the time I am investing to take an active part in my own health..

Best Regards,

My thanks to all of you on this forum!

MotorChris