Need support/information - Haing a tough time with CPAP

[SleepingUgly]

I am going to take action and email my DME and request a loaner LT and an EasyLife Nasal Mask in Medium and size Medium pillows for my FX. I am going to order a barrel cozy for my FX, a Pur-Sleep hose management system and some Remzzz mask liner.

Laurie, Remzzz have to be ordered for a particular mask in a particular size, and right now you don't know which mask you will wear, and whether you'll need Remzzz with it. That's great if your DME will lend you all these things.

With the Activa LT, watch the video and slide show on the Resmed site. The mask inflates to greet your face, so you don't want it strapped down too tight, or too loose. If the bridge of your nose hurts a little with it, but not terribly, consider putting some mole skin on your nose to protect it while you try the straps and the nose bridge dial at different settings. If I find a setting that works, I use a tape measure to measure the top and bottom straps and I write it down along with the number I have the nose bridge dial set at.

Oh, I see from someone else's post that perhaps you meant a different LT than the Activa LT. If you like Nasal masks better than pillows, I would ask your DME to try an Activa LT.

[Ms. L]

One More for the Swift LT-

http://www.youtube.com/watch?v=YEIQtJfBfas Rotating barrel/360degree rotating elbow for hose

There is also Swift LT for her on cpap.com

Hope this helps!

[Laurie1041]

Laurie, I have had a lot of the problems you've had, including sores inside my nostrils and sores on the bridge of my nose. Have you tried the Activa LT nasal mask? A lot of people like it. My experience with it is somewhat limited, but so far no welts on the bridge of my nose. Admittedly, I haven't used it for a ton of days in a row, so I can't speak to whether it would cause sores after awhile.

If you're going to stick with nasal pillows, my advice is like Ozij's--take a short break to let your nostrils heal (assuming your apnea isn't so severe that this would be hazardous for your health). After that use Ayr Gel inside your nostrils, and you can try Lansinoh. The latter will also help with the seal.

I don't know much about the medications you are on and how sedating they are. Trazadone used to be the drug of choice to knock people out at night, but I don't know what's currently used, or what's best for you.

No, I have not tried the Activa LT nasal mask, but I will certainly ask if I can get a loaner. I have Ayr Gel which I use inside my nostrils and I also have Lanisoh. Trazadone works for some, but unfortunately for me it just leaves me groggy. I am going to give Silenor (doxepin) a try. I just sent a fax over to my doc asking him to call it in for me. With the nasal masks I have tried so far (EasyLife and ComfortGel) with just one night's use, I have a huge red welt over the bridge of my nose. I'll definitely give the Activa LT nasal mask a try! Thank you for the suggestion. Laurie

[brazospearl]

Laurie, honey,
I am completely in awe of your dedication to helping yourself in these difficult circumstances. Your special situation is about as complicated as things can get, and little changes for the better can have huge returns later on. I know it's hard to practice patience, but figuring out what to tweak to optimize your therapy (both chemical & cpap) takes time because it's trial and error. There IS a solution--just keep looking for it!

Have you tried the Sleepweaver mask? It's kinda pricey, and many people have leak problems with it, but it sure is soft and light. Might be handy while your nose heals up. I credit using it in the beginning to my good start on cpap. Just a thought.

Wishing you sweet dreams!

[tonycog]

Laurie
I don't have any specific suggestions regarding a nasal mask since they don't work for me & I use a full-face one. But when I read your words about how bed is no longer the inviting place it once was I could understand that. In June of 2009 I was in my first month of BiPAP, and I struggled mightily. I said nearly the exact thing you said about bed no longer being comforting. It will get better because you obviously are not giving up. Take the advice offered here. Try things out one-at-a-time and gradually you will get this PAP thing figured out. The first time you wake up and have to check to see if you still have your mask on, only to realize that you do and don't really notice (too much) it is a wonderful thing. It will happen.

Best wishes,
Tony

[ozij]

Laurie, try alternating the masks you have -- the bridge of the nose needs as much of a break, and time to toughen as do your nostrils -- repeated irritation, without giving the skin a time to heal will cause problem on any part of the body.

Back when I was trying masks that touched the bridge of my nose -- and getting a red, irritated mark I found that even a strip of 1" Micropore tape across the bridge of my nose was helpful.

Given the time to heal, the skin toughens very quickly -- but it must be given that time.

Contact padacheeks about her various nose bridge solutions, and take a look at cpap.com too -- in the comfort and cleaning part, there are nose protectors under "leaks".

Padacheek's cheek protectors for the Opus worked great for me.

[Laurie1041]

With the Activa LT, watch the video and slide show on the Resmed site. The mask inflates to greet your face, so you don't want it strapped down too tight, or too loose. If the bridge of your nose hurts a little with it, but not terribly, consider putting some mole skin on your nose to protect it while you try the straps and the nose bridge dial at different settings. If I find a setting that works, I use a tape measure to measure the top and bottom straps and I write it down along with the number I have the nose bridge dial set at.

Hi SU,

I stopped in at my DME and they had a brand new Mirage Activa LT waiting for me to try out and was informed that I could take as much time as I wanted in order to be sure that it was going to work for me. I watched the video regarding the Activa LT on the ResMed site before I went to my DME so that I knew a little bit more about the mask and its settings. I received a fitting and about a 20 minute demonstration on how to change settings, etc. It felt very comfortable in the office setting and I am actually very excited to try it out tonight. I am going to run out and get some moleskin before I settle into my evening - just in case. If this proves to be "my mask", I will use your tape measure method and write down the measurements and the nose bridge dial settings - once I have everything dialed in. That's a great idea! Thank you very much for all your suggestions. I'll post my findings in the morning. Laurie

[Laurie1041]

Laurie
I don't have any specific suggestions regarding a nasal mask since they don't work for me & I use a full-face one. But when I read your words about how bed is no longer the inviting place it once was I could understand that. In June of 2009 I was in my first month of BiPAP, and I struggled mightily. I said nearly the exact thing you said about bed no longer being comforting. It will get better because you obviously are not giving up. Take the advice offered here. Try things out one-at-a-time and gradually you will get this PAP thing figured out. The first time you wake up and have to check to see if you still have your mask on, only to realize that you do and don't really notice (too much) it is a wonderful thing. It will happen.Best wishes,Tony

Tony,

You gave me the most wonderful gift - that of renewed hope. For this, I am eternally grateful. I am really at a loss for words. You and the other members of this forum are so very special. I cannot wait for that day when I wake up and wonder where my mask is, only to find out that it is right where it should be! That will be a moment to celebrate! In the meanwhile, I will do what I am supposed to do - not give up, and ask for help when needed. Thank you again!
Laurie

[Laurie1041]

SUCCESS! I used my new Mirage Activa LT nasal mask and I slept like a baby. No pain, no discomfort, no leaks that I was aware of. No cold air blowing on my neck, no sore nostrils. I slept beautifully on my side and only woke up at 5:30 AM for a bathroom break. Went right back to bed and off to slumberland I went.
I feel so much better this morning and feel rested and ready to start my day. I do have a small red mark over the bridge of my nose, so I will search for either Remzzz or moleskin.

Thank you, thank you everyone for your support! Let's see if I can make night number 2 just as successful! Hugs to all, Laurie

[Janknitz]

Whoo Hoo! The mask is THE most important part of CPAP success. If the nose ain't happy, ain't nobody happy

[Tired Linda]

SUCCESS! I used my new Mirage Activa LT nasal mask and I slept like a baby. No pain, no discomfort, no leaks that I was aware of. No cold air blowing on my neck, no sore nostrils

Good to hear it, Laurie!

This has been a struggle for me as well, and this gives me hope. I'm going in and requesting an Ultra Mirage FFM later today...that will be mask no. 8, and I'm hoping I can report the same tomorrow, as well!

Linda

[brazospearl]

Congratulations! Hope you have many more nights like this!