I'm so sick of this--venting

[Moondance]

I've been trying to get this to work for me. I'm in my 4th month of therapy and I'm so done with it.

vent alert
*I'm tired of waking up every night (still) and then unable to quickly fall back to sleep because the headgear has slipped or the nasal pillow is leaking or the tube is around my neck or my nostrils are sore or my throat is as dry as a desert or I can't get comfortable on my side. I seem to rotate through them randomly despite efforts to resolve the issues. If I've hit my minimum 4 hours, it's all I can do to not pull it off and continue sleeping without it. Most nights I'm successful at keeping it on, but not every night.
*Working with my DME is like pulling teeth, every time. I want to pull my hair out each time I have to talk to my insurance company. And the fact that I have to keep calling, keep checking on them, monitor my bills, etc. ticks me off.
*I don't feel like the therapy is doing much for me except costing me money and adding to my stress.
*I really, really hate it.
end vent

[Julie]

Oh.. Hi, love your name but so sorry for all the hassles.

I'm sure at least most of the stuff can be helped, so starting nowhere special what about dealing with the hose - have you heard about Hose Buddies? They're like little IV poles beside your bed and keep the hose away from you... but many others attach the hose (loosely) to headboards, sky hooks, etc... if you haven't tried any of those.

Dryness - you're using nasal pillows now, but have you ever tried a well fitted FF mask (when lying down cuz your face changes a lot then)? The idea of mouth breathing may not be cool, but if you do it, you lose Cpap therapy that way and acquire dryness. Maybe you could try taping for a couple of nights to see what happens - if it helps. Do you not use the humidifier?

What about a new mattress?

Any chance you can change DMEs - you shouldn't have to put up with lousy service!

Are you using Sleepyhead to see what goes on overnight otherwise? Whether you're actually getting effective therapy? If not, it can't help your mood, to say the least.

Some of this may be old news to you, but gotta start somewhere.

[HoseCrusher]

When you hold back it significantly adds to your stress level.

Quit trying to be diplomatic. Tell us how you really feel...

OK, your DME doesn't see to be able to support you. That means you will have to figure this out for yourself. We are here to help but you will have to do all the work.

First question: Why do you want this therapy to work?

Some people think health may not be worth the effort to achieve it. Others may leave the impression that living long isn't all its cracked up to be. Still others will remind you that you are just growing old and that causes you body to fail. We think this therapy can help keep you healthy and avoid may health problems.

Who do you want to listen to?

Next question: Can you break down your issues into little bits? It is easier to address a little bit at a time and eventually this will lead to addressing all the issues.

Next question: What is the first bit you want help with?

[Moondance]

Thank you for your replies!

Some days it all feels overwhelming (especially when I don't get a solid night's sleep!).

I haven't tried other masks yet because no one explained to me that I could order additional masks/pillow more frequently than the every 3 month automatic supply, even when I asked (though I didn't follow through as I should have). I know now I can order more frequently and have done so, but am waiting for additional pillows so I have some thing new instead of limping along with a 3 month old piece. Then I'll look into trying other styles.

Speaking of nasal pillows, the leakage I refer to is from sleeping on my side and the pillow (the one my head is on) slightly dislodges the nasal pillow and I've got air blowing in my eyes.

Yes, I use the humidifier, but in dry Colorado, sometimes even a setting at 5 or 6 isn't enough. But if I crank it up, I get the water build up (can't think of what it's called).

My headboard has a natural "hook" for my hose. Apparently, my rolling side to side causes it to occasionally get wrapped around my neck.

I do have sleepyhead, I just haven't had time to understand what all the graphs mean.

I don't know if I can change DME's. I'm using the #1 provider on my insurance company's list for my area. I guess I could look into it, but I shudder at the thought of starting over, especially because my Dr. can't event get a request for an Rx to up my minimum pressure right. I can't imagine the hassle of having to start over.

If I felt better rested or more energetic or something, I might feel like the hassles are worth it. But I'm not giving up. Some days it's just hard.

[Julie]

Ok, we can interpret SH for you if you post some graphs ... on Imgur.com and leave a link in this thread.

Google PapPillow.com re special pillows with cutouts for masks.

What about adding a room humidifier?

So the hassle of staying with your DME is better?

Thank you for your replies!

Some days it all feels overwhelming (especially when I don't get a solid night's sleep!).

I haven't tried other masks yet because no one explained to me that I could order additional masks/pillow more frequently than the every 3 month automatic supply, even when I asked (though I didn't follow through as I should have). I know now I can order more frequently and have done so, but am waiting for additional pillows so I have some thing new instead of limping along with a 3 month old piece. Then I'll look into trying other styles.

Speaking of nasal pillows, the leakage I refer to is from sleeping on my side and the pillow (the one my head is on) slightly dislodges the nasal pillow and I've got air blowing in my eyes.

Yes, I use the humidifier, but in dry Colorado, sometimes even a setting at 5 or 6 isn't enough. But if I crank it up, I get the water build up (can't think of what it's called).

My headboard has a natural "hook" for my hose. Apparently, my rolling side to side causes it to occasionally get wrapped around my neck.

I do have sleepyhead, I just haven't had time to understand what all the graphs mean.

I don't know if I can change DME's. I'm using the #1 provider on my insurance company's list for my area. I guess I could look into it, but I shudder at the thought of starting over, especially because my Dr. can't event get a request for an Rx to up my minimum pressure right. I can't imagine the hassle of having to start over.

If I felt better rested or more energetic or something, I might feel like the hassles are worth it. But I'm not giving up. Some days it's just hard.

[Wulfman...]

I've been trying to get this to work for me. I'm in my 4th month of therapy and I'm so done with it.

vent alert
*I'm tired of waking up every night (still) and then unable to quickly fall back to sleep because the headgear has slipped or the nasal pillow is leaking or the tube is around my neck or my nostrils are sore or my throat is as dry as a desert or I can't get comfortable on my side. I seem to rotate through them randomly despite efforts to resolve the issues. If I've hit my minimum 4 hours, it's all I can do to not pull it off and continue sleeping without it. Most nights I'm successful at keeping it on, but not every night.
*Working with my DME is like pulling teeth, every time. I want to pull my hair out each time I have to talk to my insurance company. And the fact that I have to keep calling, keep checking on them, monitor my bills, etc. ticks me off.
*I don't feel like the therapy is doing much for me except costing me money and adding to my stress.
*I really, really hate it.
end vent

I don't know who deleted your first post or why, but I'm resurrecting it so that the thread may make some sense.
( Otherwise it's Julie replying to "nothing" )

Anyway, if you really want it deleted, that can be accomplished, too.

But, to the OP, your frustrations are not unusual. Stick with it. Do some thinking "out of the box" and hang in there.


Den

.

[Michelle-OH]

If your nostrils are sore as in chapped, I found the pad a cheek barrel cozy totally got rid of that for me, lanolin didn't help me too much. The barrel cozy also helped with pillow leaks.

[Gasper62]

Hey. Here's a thought. Maybe buy and try some other masks with different configurations. A nasal-type mask could give your nostrils a break from irritation caused by your current setup. IMO, everyone should have at least one FFM for times when breathing through the nose is impossible, for whatever reason.(allergies-colds-etc.) Many members here can guide you in changing and tuning your machine's pressure settings. Hose management hangers are good for folks that toss & turn a lot. Link below is to a great "custom fit" nasal mask that I loved back before I turned into a mouth-breather. Maybe you'd be comfortable using one. Good luck.

https://www.cpap.com/productpage/profil ... onics.html

[kteague]

Just a few things to maybe mitigate the aggravation...
- As to your sleeping pillow dislodging the mask when turning from side to side, my first resolution was to sleep at the edge of the pillow. Later I discovered that a very firm pillow that doesn't allow my face to sink in allowed me to not have to hang my face off the edge of the pillow. I've used both firm memory foam and buckwheat hull pillows successfully. Also, many on here in the past have added an extra strap or scarf - just a little something to help stabilize the mask. I used something extra for the first few years. The big caution if you do this is to be very sure whatever you add cannot slide and block vent holes.
- If your headboard allows your hose to wrap around your neck, you may need to do some modification or switch to another hose management technique. You shouldn't have to deal with getting tangled up on top of other issues. You may not be able to completely resolve every irritating aspect of treatment, but as you address the ones you can, maybe the others won't seems like as big a deal.

If you want a chuckle search the forum for pantyhose tights. Tights were once all the rage here as the stabilizer of choice.

[Moondance]

Again, thanks for the replies.
I have NO idea what happened to my original post. How strange! Anyway, thanks for adding it back in.
I have a better attitude about therapy today, as I had a better night's sleep. I sincerely appreciate everyone's suggestions and comments. I will continue working for a solution to each irritant.

[ger365]

Hi Moondance,
On the hose around your neck...can you shorten the length hanging down from the headboard?
I went to the dreamwear mask-hose fits on top of head...now no 15 MM boa constrictor around my neck...lol
good luck on your journey.

[Sir NoddinOff]

Somebody got crazy or sloppy and probably hit the spam button on you. Here's your original text which I got by scrolling down the quote/replies segment. WHOOPS... JUST SAW DEN DID THE SAME THING ABOVE

I've been trying to get this to work for me. I'm in my 4th month of therapy and I'm so done with it.

vent alert
*I'm tired of waking up every night (still) and then unable to quickly fall back to sleep because the headgear has slipped or the nasal pillow is leaking or the tube is around my neck or my nostrils are sore or my throat is as dry as a desert or I can't get comfortable on my side. I seem to rotate through them randomly despite efforts to resolve the issues. If I've hit my minimum 4 hours, it's all I can do to not pull it off and continue sleeping without it. Most nights I'm successful at keeping it on, but not every night.
*Working with my DME is like pulling teeth, every time. I want to pull my hair out each time I have to talk to my insurance company. And the fact that I have to keep calling, keep checking on them, monitor my bills, etc. ticks me off.
*I don't feel like the therapy is doing much for me except costing me money and adding to my stress.
*I really, really hate it.
end vent

You've received a good deal of practical advice which should help so I've only one thing to add. A lot of people, including me, have had more than a few 'why me' moments, especially when it finally sinks in that this CPAP device is generally a life-long endeavor. The problem with adopting the 'why me' stance is that it spreads to other areas of your life: often it's 'why me' when you have a fender bender, 'why me' when you don't get a promotion, 'why me' when sickness strikes etc. It becomes a vicious life attitude cycle that starts to erode one's faith in simply existing and, more importantly, enjoying life. Due to my DNA and heritage, I have to be constantly on guard against the 'why me' trap - I'm northern Germanic heritage featuring long winters, crazy wars and a not too healthy diet ...blah, blah and so forth. Just dredging up these few words brings back some of those old feelings - so I'm now ending this philosophical ramble.