No motivation to continue therapy

[Vexations]

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?

[BlackSpinner]

However your heart and other organs are benefiting. And sometimes we are so damaged it takes up to a year to repair that damage.

Does your machine have data? Are you monitoring it? What is your AHI?
How many masks have you tried? What kind? Are you over tightening them? Are you mouth breathing?
Have you worn it while watching tv to get really used to it?

[Jeff241]

Being claustrophobic may have a lot to do with your problems. Have you tried other masks? You are already using a nasal mask maybe going toward a nasal pillow type mask may help.

Could your headaches be from the straps on your mask?

You seem to have a data capable machine, do you use software to check how you are doing?
Knowing what your numbers are might help.

You said your Dr. said you need to be compliant, is that for employment reasons?

[LSAT]

A good motive to use the machine is "to live longer".

[Julie]

It's so important that we look at some data, even if only from your screen, though you could DL SleepyHead free on the forum, then using Photobucket for screen shots of the printouts, provide a link in this thread to the pix. You may be overtightening the straps, especially in the back, but if it's the only way the masks stays put, the mask is either badly fitted or just the wrong one altogether (and there are so many to choose from). The snake dream might reference that the hose is tangled around your neck or in bedding, and there are fixes for that too, like running it loosely from the headboard, a ceiling hook, or a Hose Buddy - a bit like a small IV pole bedside that keeps it up and out of trouble - it is on a swivel after all.

Are you using the ramp feature? Have you tried not doing so? Are you lying rigidly in one position (I hope you're not a back sleeper because it provokes more apneas) afraid of dislodging the mask and thereby creating tension all over, never mind in your neck/head?

[49er]

Vexations,

The only thing I would add to the excellent responses you have received is to ask about your nasal congestion because that can contribute to problems with pap therapy.

Hang in there.

49er

[photonic]

Here are some thoughts. Perhaps the Oracle oral mask would help. One member here found that this eliminated his claustrophobia. The mask is almost not there. I find it extremely tolerable. The second thought is that the Hozer hose management device simply eliminates all the hose issues. It is VERY well made and I just finished traveling with it for one month and it was just fantastic. Problem solved!

Hope these thoughts help.

[Vexations]

However your heart and other organs are benefiting. And sometimes we are so damaged it takes up to a year to repair that damage.

I've been thinking about that. Is there any way for me to quantify that somehow? Is it possible that I've had the condition for a very long time, and I'm just so used to being sleep deprived that I need longer to return to a "normal" that I've never known than people who have developed OSA recently? Does anyone have any experience with that?

Does your machine have data? Are you monitoring it? What is your AHI?

Yes, the F&P Icon collects data, but I get a paper copy of a F&P InfoSmart report only. Before therapy, my AHI was 50, it is now it's 2.2

How many masks have you tried? What kind? Are you over tightening them? Are you mouth breathing?

I have tried two, and am about to start trying a third. I started with a ResMed Swift FX nasal pillow but quickly switched to a Mirage FX. I'm about to try a new mask: the AirFit N10. I went to see my technician this morning. She thought that the mask was a bit too loose for 10 cm H2O, and I should tighten it more. She did note that the settings for the humidifier were too low, and I should increase the humidity setting from 2 to 3 or 4. The humidity in my bedroom was very high in the summer. I has only recently come down to less that 80%. The leak numbers are not good, I think. I have

Code: Select all

System Leak 42.0 l/m 
90th percentile System Leak 70.0 l/m
% time with excessive Leak 16%

My partner says I'm not mouth breathing when I wear the mask.

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.

[Vexations]

Could your headaches be from the straps on you mask?

Unlikely. The tech I spoke to today suggested that they were too loose. Se did think the air was too dry and that the headaches are caused by dried out cavities. I use a non-medicated nasal rinse (saline solution). Will try raising humidity as she suggested from 2 to 3 or 4.

You said your Dr. said you need to be compliant, is that for employment reasons?

He <del>threatened</del> advised me that my driver's license would be taken away if I were non-compliant. That would be a bit of a problem.

[Vexations]

A good motive to use the machine is "to live longer".

I'll take quality over quantity

[Vexations]

It's so important that we look at some data, even if only from your screen, though you could DL SleepyHead free on the forum, then using Photobucket for screen shots of the printouts, provide a link in this thread to the pix.

I hadn't realized Sleepyhead works with my F&P Icon. Trying it now.

You may be overtightening the straps, especially in the back, but if it's the only way the masks stays put, the mask is either badly fitted or just the wrong one altogether (and there are so many to choose from). The snake dream might reference that the hose is tangled around your neck or in bedding, and there are fixes for that too, like running it loosely from the headboard, a ceiling hook, or a Hose Buddy - a bit like a small IV pole bedside that keeps it up and out of trouble - it is on a swivel after all.

I hadn't heard of that yet, but that looks like it might work. I'll give that a try.

Are you using the ramp feature? Have you tried not doing so? Are you lying rigidly in one position (I hope you're not a back sleeper because it provokes more apneas) afraid of dislodging the mask and thereby creating tension all over, never mind in your neck/head?

I am using the ramp feature; it's set to go from 4.0 cm H2) to 10 over 20 minutes. I briefly tried not using it, and prefer that it is on. I am a side sleeper. I do think I am very anxious about moving the mask, and it's very likely I become so tense that tight neck muscles cause or contribute to the headaches. Is there a fix for that?

[Vexations]

Here are some thoughts. Perhaps the Oracle oral mask would help. One member here found that this eliminated his claustrophobia. The mask is almost not there. I find it extremely tolerable.

I had not seen that one yet. Thanks for the tip.

The second thought is that the Hozer hose management device simply eliminates all the hose issues. It is VERY well made and I just finished traveling with it for one month and it was just fantastic. Problem solved!

And I hadn't seen that one either. Nice.

[Pugsy]

Might also take a look at your bed pillow and mask combination.
Maybe the current setup is promoting extra tension or torque on the cervical spine. If the cervical spine isn't happy it usually pays us back with a bad headache. I speak from experience there.

Your large leak number to avoid is 60 L/min.
When your machine tells you

System Leak 42.0 l/m
90th percentile System Leak 70.0 l/m
% time with excessive Leak 16%

16 % if the night was spent above 60 L/min leak.
How far above we can't tell from this little piece of data. Using SleepyHead software would help you determine how far you went.
At 70 L/min it probably isn't high enough to totally miss flagging of apnea events but very far above that could be missing some events. Probably not going to impact the AHI with only 16% of the time involved but if longer or higher..it could give you a false low AHI.

You might take a look at the Resmed Swift FX Nano cushion mask if you tend to prefer cushion masks.
It's a pretty sweet little mask and the lower back strap is less likely to make the cervical spine mad at you.
I have a really bad cervical spine (ate up with arthritis and have a metal plate in my neck so I know about bed pillows and masks with back straps that make cervical spine mad and the headaches that come with it) and the Nano was a nice compromise. The Respironics Wisp back strap was a bit annoying.

Also re evaluate your bed pillow and how it might affecting how you sleep and mask fit. I prefer a buckwheat hull pillow myself. It works well for me for finding just the right support my neck needs and lets me make a little "nest" for my mask to rest in so that it doesn't put extra pressure on the mask. I end up on my stomach often.
There are also cpap masks with cut outs for the mask to rest...you can make your own with a cheap memory foam pillow from WalMart. Just use an electric knife to cut the foam.
I don't do well with memory foam pillows as most of them are a bit too high for me and put unwanted torque on my neck. I like them otherwise but the buckwheat hulls let me find the perfect height for whatever position I am in.

[Wulfman...]

A good motive to use the machine is "to live longer".

I'll take quality over quantity

Without "effective" therapy, you won't have either.


Den

.

[Pugsy]

I'll take quality over quantity

I understand what you are saying but remember...not all heart attacks or strokes put us in the grave.
Often they just put us on life support being a vegetable or in diapers and can't feed ourselves or speak or walk..... and I don't know about you but that doesn't qualify as "quality" in my book.