I'm Done. Cannot do this.

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Zeecat
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I'm Done. Cannot do this.

Post by Zeecat » Thu Jul 24, 2014 9:54 am

I've only posted here a couple of times, which means I've provided no feedback or support for anyone though I'm looking for some. I apologize upfront.

Begin rant:

It's been 6 weeks. My DME is condescending, and expects me to grovel for masks with hodgepodge headgear. I'm swallowing air and suffering horrible abdominal pain. I have leaks and they seem to always aim at my eyes. I wake up repeatedly throughout the night. Often with my hose around my neck. My nose is congested at night to the point that when I breathe my clear nostril sucks closed.

My doctors all say, with the CPAP I will feel so much better. The sleep doctor says, well, your AHI is better so it must be other things making you feel like crap. I just want to scream, throw in the towel, and go to sleep the way I used to.

:End Rant.

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Slartybartfast
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Re: I'm Done. Cannot do this.

Post by Slartybartfast » Thu Jul 24, 2014 10:58 am

Rant away; you're entitled. Nobody said it would be easy.

I don't know how helpful this will be, but when I was still in denial, a friend confided in me that he was on the hose. He told me his doc told him he was 60, overweight, sedentary, stuck in a high-stress job with few options and less support, and he was a prime candidate for a stroke. He said he simply took his doctor's advice seriously and decided, "I'm going to do this no matter what." And it turned out it wasn't so bad. So a few weeks later, when I went to my sleep study and was diagnosed, I adopted my friend's attitude and decided I would learn everything I could, and do whatever it takes to make CPAP therapy work. And it's made a huge difference.

Everybody has their own particular challenges, and getting help from the other folks who have trodden down the path is what this forum is for.

1. My DME is condescending, and expects me to grovel for masks with hodgepodge headgear.

2. I'm swallowing air and suffering horrible abdominal pain.

3. I have leaks and they seem to always aim at my eyes.

4. I wake up repeatedly throughout the night. Often with my hose around my neck.

5. My nose is congested at night to the point that when I breathe my clear nostril sucks closed.
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1. Some DMEs are like that. Others, not at all. Try another DME. Or see if you can get help from someone else at your DME.
2. Aerophagia is something you ought to discuss with your sleep doctor. Sometime sleeping on one's back can cause it.
3. Leaks are often caused by having the strap(s) too tight, odd though that might seem.
4. As you begin to get some of the other problems solved, that should moderate. I still awaken several times, but usually only long enough to readjust a mask, or re-route the hose, then I'm out like a light.
5. My sleep doc, who is also a pulmonologist, said, "I can't emphasize strongly enough to my patients the importance of using a saline nasal spray before putting the mask on. The spray is just salt water. Spray into each nostril while inhaling until you can feel the salt solution running down the back of your throat. Then put the mask on and you should have no problem with congestion."


Attitude is everything.
Last edited by Slartybartfast on Thu Jul 24, 2014 11:03 am, edited 1 time in total.

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Julie
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Re: I'm Done. Cannot do this.

Post by Julie » Thu Jul 24, 2014 11:03 am

Lowering humidity setting can often help (or get rid of) congestion. Lowering your pressure settings (just by a notch) can often help with aerophagia, as can raising the head of your bed on blocks by about 4". Trying as many masks as you can manage - lying down, in the size most appropriate for you, and otherwise fitted properly (not overtightened - causes more leaks than otherwise) would be a good place to start, and being able to track your nightly progress with software would make a big difference. We'll help all we can - and there are some very knowledgable/experienced people here, so don't quit just yet, and give us a chance. Don't cheat yourself because your doctor's a dud!

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palerider
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Re: I'm Done. Cannot do this.

Post by palerider » Thu Jul 24, 2014 11:14 am

Slartybartfast wrote:3. Leaks are often caused by having the strap(s) too tight, odd though that might seem.
many people, myself included, find a cloth mask liner helps to muffle and diffuse leaks and turn an intolerable situation into something that's much easier to put up with.

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Zeecat
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Re: I'm Done. Cannot do this.

Post by Zeecat » Thu Jul 24, 2014 12:17 pm

Thank you so much for the replies! I've been subscribing to the "I'm doing this no matter what" train of thought and my compliance is 100%. My AHI is down to 2. I know how good this is for me, yet I am so frustrated.

I've made a list of things to purchase and try, such as the saline spray and actual mask liners. I've been cheating and cutting liners out of thin cotton cloth. I noticed last night that while on my back I was snoring, so perhaps that could also indicate that I'm more prone to swallowing air in that position? Side sleeping tends to push the mask off. Has anyone had any luck with the special CPAP pillows? I currently have a tempurpedic pillow but I'm willing to try just about anything.

Lowering the humidity might help? This is good to know and the opposite of what my DME told me. I have the sleepyhead software, (which I am so grateful for!), and tonight I will try my 4th mask which is what set off this rant. I was sent the Philips Respironics Comfort Gel Blue nasal mask, with headgear that goes to a ResMed mask /sigh. I've been using the wisp nasal mask, though I really like the idea of the nasal pillows. I've tried two sets of the pillows and they either leak or I feel like I've got something up my nose and can't breathe.

Every professional I've seen said just keep trying masks until you get it right. Problem is, my DME doesn't agree. They are pushing specific mask styles and brands and when I requested something different it was a huge inconvenience. Looks like I'm just going to have to do it myself and start buying stuff and seeking reimbursement if possible. I've also requested a referral to a sleep center, in addition to the ENT I've seen elsewhere. I'm hoping the sleep clinic will have different advice since it is staffed with multiple physicians.

I am so open to any suggestions anyone has. I look forward to a day where I can provide useful advice here!

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Slartybartfast
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Re: I'm Done. Cannot do this.

Post by Slartybartfast » Thu Jul 24, 2014 12:36 pm

You said you were snoring while sleeping on your back. Was your mouth open (mouth-breathing) or were you snoring through your nose? If the former, you might need a full-face mask. If the latter, you might need more pressure to keep your airway open.

Re: sleeping on your side, most any pillow will work. Just position your face so the nose and associated hardware hangs off the side of the pillow. The special CPAP pillows make that easier, but I've never found that I needed anything but making sure my schnoz is off the edge of the pillow.

What pressure(s) are you using?

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woodworkerjunkie
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Re: I'm Done. Cannot do this.

Post by woodworkerjunkie » Thu Jul 24, 2014 12:51 pm

Might be time to start looking for a new DME.

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palerider
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Re: I'm Done. Cannot do this.

Post by palerider » Thu Jul 24, 2014 1:02 pm

Zeecat wrote: I've been cheating and cutting liners out of thin cotton cloth.
the mask liners I've gotten so far have been more like fairly heavy t-shirt material, the double knit fabric, stretchy, etc... I think thin shirt/sheet type material wouldn't work as well.

they're not perfect, but they do muffle noises.

worth sacrificing a old t-shirt for, or possibly (though I haven't tried) an old kitchen towel.

it'll leak, but it'll be more of a gentle breeze instead of a BRAAAAPPPP!! SQUEEEE blast

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Drowsy Dancer
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Re: I'm Done. Cannot do this.

Post by Drowsy Dancer » Thu Jul 24, 2014 1:08 pm

Zeecat wrote: Has anyone had any luck with the special CPAP pillows? I currently have a tempurpedic pillow but I'm willing to try just about anything.
I have! I like mine a lot. (I use nasal pillows and Bella loops, FWIW)
Zeecat wrote:Lowering the humidity might help? This is good to know and the opposite of what my DME told me.
This is a real YMMV area. Sometimes you need to boost it, sometimes you need to drop it. Everyone's nose is different. Have you tried using a neti pot? If you experiment with one, try using it early in the day.
Zeecat wrote:Every professional I've seen said just keep trying masks until you get it right. Problem is, my DME doesn't agree. They are pushing specific mask styles and brands and when I requested something different it was a huge inconvenience. Looks like I'm just going to have to do it myself and start buying stuff and seeking reimbursement if possible. I've also requested a referral to a sleep center, in addition to the ENT I've seen elsewhere. I'm hoping the sleep clinic will have different advice since it is staffed with multiple physicians.
You might be able to experiment with different types of masks purchased from Craigslist if that's an option in your area. Check here to confirm whether prices offered are fair.

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Tatooed Lady
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Re: I'm Done. Cannot do this.

Post by Tatooed Lady » Thu Jul 24, 2014 3:06 pm

Zeecat wrote:Every professional I've seen said just keep trying masks until you get it right. Problem is, my DME doesn't agree. They are pushing specific mask styles and brands and when I requested something different it was a huge inconvenience.
So here is my evil trucker side...

Too f'ing bad it's inconvenient for them to have to do their job to help you regain your health. My opinion is simple...if they can't handle their current job, they should turn in their little shiny nametag, grab a spatula and a paper hat and learn to call their new 17 year old pimple ridden boss "sir" while asking "would you like fries with that?" with a smile. Same as I tell whining truckers who constantly complain that people expect them to do their job.

YOUR HEALTH IS AT STAKE. Don't let them talk you out of it.

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library lady
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Re: I'm Done. Cannot do this.

Post by library lady » Thu Jul 24, 2014 3:31 pm

There's nothing wrong with making your own mask liners. I use my own made from t-shirts interchangeably with those I purchased. If the ones you are making now aren't working well for you, I'd suggest buying a package of RemZzzs liners to get you started on the right path, then find some material similar to it to cut your own. I bought a large men's t-shirt at the local goodwill store; it makes a good many liners. I wear each once, then put into a mesh bag and at the end of the week put them into my laundry. I let them dry flat, then iron them and they are good for another round of wear.

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Sclark08
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Re: I'm Done. Cannot do this.

Post by Sclark08 » Thu Jul 24, 2014 3:43 pm

After two years on Cpap this is what I have learned.

There is no mask in this world that fits my face Ive tried them all. I am using the one that works the best out of all I have tried. I use mask liners to help with leaks.

I went from Cpap to Bilevel because I also have COPD and I could not exhale against the high pressure needed to stop my events. It was almost like learning to breathe again but it is working my numbers are great and I feel much better.

I dont feel perfect, I have my bad nights I try to work through them. I have terrible osteoarthritis so pain at night is another issue with me.I have had to try 50 different pain medications to find one that would not depress my breathing too much but I did finally find the right one.

There are other issues I ecperience from time to time but in the end I feel better, numbers are better and I need CPAP to stay alive. Apnea puts all of us at greater risk for stroke heart attack.

Learn as much as you can, work with you Dr and DME. If you cant work with the one you have get another one. Tune into this sight, many experienced people here to help you. Please try to tamke it work. Its too important. Best of luck

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Pugsy
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Re: I'm Done. Cannot do this.

Post by Pugsy » Thu Jul 24, 2014 4:19 pm

memberlist.php?mode=viewprofile&u=62662

Send the above forum member a private message and ask about free sample pack of Remzzzs mask liners. She works for them and will send out a free sample pack of liners. You just have to get with her and tell her what mask and size.
She will get an email notification that she has a private message and will get back with you

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Sir NoddinOff
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Re: I'm Done. Cannot do this.

Post by Sir NoddinOff » Thu Jul 24, 2014 5:46 pm

Sclark08 wrote:After two years on Cpap this is what I have learned.

There is no mask in this world that fits my face Ive tried them all. I am using the one that works the best out of all I have tried. I use mask liners to help with leaks.

I went from Cpap to Bilevel because I also have COPD and I could not exhale against the high pressure needed to stop my events. It was almost like learning to breathe again but it is working my numbers are great and I feel much better.

I dont feel perfect, I have my bad nights I try to work through them. I have terrible osteoarthritis so pain at night is another issue with me.I have had to try 50 different pain medications to find one that would not depress my breathing too much but I did finally find the right one.

There are other issues I ecperience from time to time but in the end I feel better, numbers are better and I need CPAP to stay alive. Apnea puts all of us at greater risk for stroke heart attack.

Learn as much as you can, work with you Dr and DME. If you cant work with the one you have get another one. Tune into this sight, many experienced people here to help you. Please try to tamke it work. Its too important. Best of luck
Well said, Sclark08. In a nutshell, a lot of CPAP'ers go thru similar stuff, especially the older ones... not necessarily the same issues but lots of problems none-the-less to be sorted out. I am one of the CPAPtalk members who thinks it's best just to simply adopt a 'problem solving' mentality early on (in case you need it) and forge ahead as best you can. As a side note: I'm always jealous of my mother-in-law, obviously much older than I am, who from the first, slapped on a mask and hasn't had a problem since. IMO, she's part of the 'easy fix' minority and damned lucky to be in that category - hey, lucky for her. I try not to chide her too much when we get together

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chunkyfrog
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Re: I'm Done. Cannot do this.

Post by chunkyfrog » Thu Jul 24, 2014 6:31 pm

I am one of the lucky ones--but it wasn't always so.
My odd little face took over 20 masks before I found one that fit ---ME!
My first DME stuck me with straight cpap, when apap is wonderful for me.
Find out what you need; and don't take "No" for an answer.

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