anyone had a relapse of non compliance after long cpap use?

echo · Post by **echo** » Sun Jul 06, 2008 6:13 pm

Hi Sharon! I sympathize too! I don't really qualify as a long-timer (started in August 07) but I've definintely had those bouts! You mentioned congestion - that's the slippery slope that caused me tons of aggravation too. Using a Neti Pot every day or every few days really helped out with that, and then i was more happy to put on the mask every night. I also replaced the silicone on the mask, as others have suggested, and that seemed to also help a lot. I also got a FFM that I still don't like too much but helps with the congestion and gives me a 'break from the routine'.

So I guess my advice would be the same as the others. First, don't beat yourself up!! Everyone can fall off the wagon, and when you do, don't give yourself hell for it.
Then look at what's bothering you the most. Is it the congestion? Or the mask? Make some changes, "mix it up" as they say and at least while you're tyring something new that'll distract you for a few days. Maybe try Pursleep? A lot of people have said it helps them relax.

One last thought - maybe meditation might help. Not only for the CPAP stuff, but just in general, just to take the edge off of all your frustrations. Probably the lack of CPAP usage is also affecting you during the daytime, and meditation might help calm and settle you... just a thought.

Good luck!! I hope you find what works for you....

deerslayer · Post by **deerslayer** » Sun Jul 06, 2008 8:33 pm

Hi Sharon, my 90% pressure has been at 10 consistent here lately . try & persevere with the increased pressure, it will pay off.Like you, i still have a few lip flutters during deep sleep but leak data keeps declining (34) and have weened myself off of ramp.Only time i am conscious during the night is when the better half is having the jumpy leg . have decreased cflex to (2) & oa at (.06) h at (.06) plus flow is way down. You can do it Girl! hang in there...i wish sleep was my only issue...tomorrow i go back to see the rheumatologist & he will most likely put me back on prednasone & methatrexate

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cflex, Ramp

sharon1965 · Post by **sharon1965** » Sun Jul 06, 2008 8:50 pm

hey all
thanks for all the kind encouragement and suggestions
i've been strict with myself since my first posting on this subject and i guess it's getting better
some of the things you all mentioned, ie: being consistent with the nasal rinsing for example, i must confess have fallen by the wayside over time, so i'll have to get back into that habit; i'm also due for a new mask so i will get that taken care of asap
again, thanks for weighing in...i just needed a nudge from some friends who can relate, i guess

Snoredog · Post by **Snoredog** » Sun Jul 06, 2008 9:25 pm

well, you are too good looking to fail and I bet you don't even know which hand to hold up on your forehead as an L for loser either

so I blame it all on your doctor, they cannot see the forest for the trees.

It is their arrogance, stubborness and insistence that a patient be on straight CPAP why so many patients fail this therapy. It is their insistence that the patient be kept totally in the dark with their therapy why they fail. Them bastards!

you should have been on a autopap from day one! "Best for therapy" and AHI means absolutely NOTHING if you are NOT using the machine.

I bet you had to fight with them aholes just to get the Pro you have now for a few reports, but had you had an autopap, you could have:

-set the Minimum pressure lower where; it would have been quieter, more comfortable to breathe against, easier to tolerate and where you could have remained on some kind of therapy

-with the autopap you would have been half way there, all you would have had to do was find a mask interface you could tolerate in the way of comfort. I've purchased more than a dozen out of my own pocket before landing on the Soyala, I keep trying new ones if there is promise but so far nothing has dislodged it from me.

If you do anything sleep on your side or stomach but that hypoxia will eventually catch up to you.

But know if you use your current machine at a lower pressure of say 6.5 it will still keep your oxygen levels up near normal levels. Even if your AHI goes to 10 it is still better than without.

Go for comfort anyway you can, don't worry so much about leaks, more important to use the machine than not, but if you want to try a good chin strap check out Bret's Pur-Sleep one, that is pretty non-invasive.

gasp · Post by **gasp** » Mon Jul 07, 2008 11:49 am

It's so good to 'see' you : ) And, I'm sorry for your struggle.

Regarding your congestion/allergies, are you caught in a medication cycle? This being one where a doctor prescribes this med and that med and another med to help the side effects of another med.

It took me over a year to get off meds and get my body's auto immune to kick in. Now all I need is the Neti Pot. I believe better sleep and regular breathing on APAP has actually helped me stay off my asthma meds.

If you get your congestion under control, then all your experience and advice here should get you going on therapy again.

Don't forget, if you're not on XPAP, then your brain is a bit foggy and makes it even harder to make decisions such as getting back on XPAP : )

I'll never forget the help you gave me when I first joined this forum and thank you again for it. Best wishes on getting back on therapy!

sharon1965 · Post by **sharon1965** » Mon Jul 07, 2008 2:09 pm

snoredog
thanks for the compliment!! that alone will make me feel better!

you're right...i had to fight tooth and nail to get the Pro 2 and it took me nine months to do that! my stoopid dr. won't prescribe me an auto (the stoopid provincial guidelines won't let me get one that's covered) but one of these days i'll have the bucks to buy one out of pocket and i'll get an rx somehow

in terms of comfort, i'm not even sure what my problem was...my headrest has always been comfy; the pressure is no problem to tolerate..i guess it was just the sudden advent of mouth leaking when i increased my pressure that messed me up

i'm back on the hose and will stay there..i'll figure it all out again

thanks snoredog!

sharon1965 · Post by **sharon1965** » Mon Jul 07, 2008 2:15 pm

gasp wrote:It's so good to 'see' you : ) And, I'm sorry for your struggle.
Regarding your congestion/allergies, are you caught in a medication cycle? This being one where a doctor prescribes this med and that med and another med to help the side effects of another med.
It took me over a year to get off meds and get my body's auto immune to kick in. Now all I need is the Neti Pot. I believe better sleep and regular breathing on APAP has actually helped me stay off my asthma meds.
If you get your congestion under control, then all your experience and advice here should get you going on therapy again.
Don't forget, if you're not on XPAP, then your brain is a bit foggy and makes it even harder to make decisions such as getting back on XPAP : )
I'll never forget the help you gave me when I first joined this forum and thank you again for it. Best wishes on getting back on therapy!

gasp
thanks for your input
actually after my septoplasty last year i had been off the allergy meds completely...unfortunately, when spring sprung my allergies were off the charts, but everyone around here felt the same way...plus our air quality is dismal, so that's when the congestion became a huge issue again which was very discouraging...plus the increased pressure caused mouth leaking which started me on the full face mask quest and that was a DISASTER!!
so, i'm back on my headrest (new one on order) and i'm back to breathing somewhat normally (gotta get back into the NeilMed rinse thing though); i have the hybrid full face if i really need one and i'm due for a new mask thru my dme
so it's enough whining out of me and time to get back on track, wouldn't you say?!
thanks again for your message, and i'm more than happy to hear that i was ever any help to you

tangents · Post by **tangents** » Tue Jul 08, 2008 8:45 am

Hey, Sharon,

I've been off the board for a week or so. Sorry to hear about your continuing struggles with CPAP. Have you stopped using a mouthguard? If so, maybe it's time to try one again? I couldn't sleep without mine at this point.

Keep trying, Sharon, you're too important to too many people to give up.

Hugs,
Cathy

goose · Post by **goose** » Tue Jul 08, 2008 3:34 pm

Hey Sharon,
Sorry to hear of your problems with the new pressure.....
I agree that it could mean that it's finally working well and you're hitting REM sleep more often. I think that hasn't been happening to me, so you're a step ahead of me.
I don't mouth breathe (that I can detect or that wife has reported), so perhaps my pressure isn't high enough even though at 10 my numbers are very consistent and when I set it to 11 the numbers go weird on me.

Like a "drug" you may need to taper up to the 10cm pressure from your comfy 8.5.....I think I'd do what's comfortable and move it up .5 a week or so until you seem to have the issues -- then work on solving the problem and moving it up to the next increment.

Poligrip worked for me pretty well when I was testing for mouth breathing.
Until I tried Bret's PAP-Cap I never found a chinstrap that worked very well, and after some playing and tuning, it now works pretty well (the first couple nights the strap would slip and the cap would move, but working with Bret and monkeying around with it, I think I've got it wired. -- I'm also working on an experiment with my ComfortGel to use the PAP-Cap as the headgear).

I really like my Headrest!!!! I will have to say that with the "factory headgear" I haven't been able to use the PAP-Cap because of the way the headgear works (that rubber band effect ). A decapitated headrest may work with that Cap.....one of these days I'll get my moto-tool out and decapitate one of my headrests.....

Just tweak with it until you make it both comfortable and work. I think the whole thing is a tweak, but then I tend to be a tweaker....

I've just taken it as a challenge -- and it's still a process in the works for me......
Anyway -- I know you'll hang in there -- you know the importance (no lecture from me!!!).

Take care
cheers
goose

ozij · Post by **ozij** » Tue Jul 08, 2008 9:52 pm

.....one of these days I'll get my moto-tool out and decapitate one of my headrests.....

My moto-tool is called scissors.

Step 1:
Gently disconnect narrow tube from the transparent hard part of the plastic seal. Wiggle, don't pull.

Step 2:
Put the hose safely away - far from sharp objects....

Step 3:
Snip the thin cream colored plastic guides just above the point where they curve from vertical to horizontal to joins the seal assembly to the headgear. (Thats is two snips, one for each side).

Step 4:
Store scissors

Step 5:
Reconnect narrow tube to transparent plastic.

goose · Post by **goose** » Wed Jul 09, 2008 11:02 am

Thanks Ozij!!!! Appreciate the photo as well.....I've been trying to figure out how I'm going to get that hose off without destroying it as it seems as though it's glued on -- I have a new one to replace the old one (so I guess it doesn't matter whether I destroy it or not, but I like having a spare -- the old one has tape on it where some weak points formed), but haven't been able to wiggle the old one off as of yet.

You must have the extra heavy duty industrial scissors!!!!
I figure the moto will make short work of it and I can put on a sanding disk and smooth all the edges as well.....I need to get another pair of tights to make the headgear out of.....I'll try to hook it up to SleepGuy's PAP-Cap as well...

Thanks again!!!!
Take care
cheers
goose

ozij · Post by **ozij** » Wed Jul 09, 2008 11:07 am

You must have the extra heavy duty industrial scissors!!!!

You're right, Goose! Thanks for reminding me It was my secateurs, not scissors.

It was actually Joanie (Catnapper) who found out the hose wasn't glued on.
And I too waited till I had a reserve mask before becoming adventurous. As a matter of fact, the first hose I disconnected was one that had sprung a leak on the top....

Enjoy!
O.

Guest · Post by **Guest** » Wed Jul 09, 2008 11:08 am

Hey Sharon, I decapitated one by just YANKING it out.

BTW, thanks for this thread. It's motivated me to start using my Sinus Rinse again. I'd really like to cut down at least ONE of my meds.

Hang in there. You know we love you!!!!!
Babs

goose · Post by **goose** » Wed Jul 09, 2008 11:29 am

That's exactly where mine was getting a weak point -- right at the end where the hose connects....I've got some "hospital" cloth tape that I used to relieve the stress on the joint before it broke.....

Yeah -- Babs, I've been neglecting my rinse as well....I guess it's time to get out the Neti pot and get back to it......

Hope things are going a bit better by now Sharon.....good vibes coming your way!!!!!!!
<<Big group hug>>

cheers
goose

JZ · Post by JZ » Wed Jul 09, 2008 8:00 pm

goose wrote:I'll try to hook it up to SleepGuy's PAP-Cap as well...

I see a PAP-Cap in my future. Goose, if you or anyone tries it with a Headrest, please post. I'd like to know how it works.

Sharon, it sounds like you are headed back on the track. The great thing is that you knew to come here to ask for help and support. You have been a help and support to so many others there is no doubt we are all rooting for you.

Janna

Machine	Mask

Additional Comments: straight cpap 12.20 AHI avg.0.79

Mask	Humidifier

Additional Comments: Pursleep, Padacheek, Regenesis™ Pillow, Neti Pot, Travel Buddy hose hanger