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Hard to breath with CPAP and RSD(CRPS) - Biggz - 10-22-2018
Hello everyone, I have reflex sympathetic dystrophy and I just started CPAP two days ago. The mask is really hard to wear with this painful disease, RSD in my foot and leg doesnt let me lie down very much. When i go to lie down my nerves go crazy and pain intensifies and my breathing gets worse then when i try to put the mask on and relax i just seem to get more suffocated. for the last 12 years i have averaged only 2 hours a sleep a night, and its from this pain that i have and then from the apnea at night. i am not a quitter and i will keep trying to get used to this mask so i will be around for my children later in life. Is there anyone else on this board that has a disease that makes it hard for them to use the CPAP but has gotten passed the cant wear part with any tips would be greatly appreciated. With all my other body problems that hurt i just need something to go smooth for me and this doesnt seem like it will at first.
Thank you
Chris
RE: Hard to breath with CPAP and RSD(CRPS) - Sleeprider - 10-22-2018
Chris, have you tried a nasal pillows mask? It seems if you are sensitive to the mask contact, then you should minimize that. Nasal pillows like the Resmed Airfit P10 are a minimal interface that uses soft headgear and only contacts the bottom of your nose. It's effective and comfortable. Your DME supplier should allow you to try different masks until you obtain an effective comfortable fit.
RE: Hard to breath with CPAP and RSD(CRPS) - Biggz - 10-22-2018
Thank you for the reply Sleeprider, I asked about the pillow ones but they said that i breath out of my mouth at night mostly so they said i needed a full facemask. I asked about the nasal with a chinstrap and she said it would not work. I will just keep working at it a little at a time or try and see if i can sleep sitting up.
thank you
RE: Hard to breath with CPAP and RSD(CRPS) - Sleeprider - 10-22-2018
We have had many members that were told the nasal pillows would not work, but I'd guess at least 50% overcome the mouth leak problem. Comfort is the number one priority, and this may be wort a try. How did the person you talked to determine you breath through your mouth? Was this a sleep technician for your study?
RE: Hard to breath with CPAP and RSD(CRPS) - Biggz - 10-22-2018
kinda just told me thats what is going on and this is what ya need. And when i asked it was just shot down real fast. I may have to go back and still try it. Wont the machine record my sleeping with the pillows as well and say if i was breathing to much out of my mouth while using nasal pillows? They say to sit and relax and read or watch tv...lol. guess what i have glasses so that kinda blows. Hey thank you very much for your help Sleeprider. Also i have insurance so do they just let you try different mask?
RE: Hard to breath with CPAP and RSD(CRPS) - mesenteria - 10-22-2018
I use a nasal mask that covers about halfway down the bridge of my nose and under it to midway between nostrils and upper lips. I don't have any problem with glasses, which I have worn since the age of 7, and which I was advised to use and to read in order to get used to the mask when first commenced the treatment.
Could you find a position, or fit, where the full frame mask still does its job and allows you to support glasses more-or-less normally?
About the machine recording breathing and leaks: I am only familiar with the RESMED AirSense 10 Elite, but as far as I know all machines need to be 'told' what type of mask they are supporting. The machine will accommodate different hose thicknesses and mask shapes/volumes once it is programmed to do so. In that case, it will still measure leakage and other parameters that have a bearing on the efficacy of your treatment from night-to-night.
RE: Hard to breath with CPAP and RSD(CRPS) - Sleeprider - 10-22-2018
Biggz, the software will tell the tale on leaks, especially if you download and install #Sleepyhead. I'd like to ge a look at your data sometime soon, because you live at a very high elevation. This can have a big effect on your therapy, and it would be worth checking for problems. Also, do you notice any change in TSD with elevation? What model Airsense 10 were you given, CPAP, Elite oe Autoset?
RE: Hard to breath with CPAP and RSD(CRPS) - Biggz - 10-22-2018
thank you for the reply mesenteria[b],I have a no go on the glasses with my mask. i want to try the nasal pillows sometime, i will have to see if i can. [/b]
[b]hello Sleeprider. I have the autoset.. i know there is different settings that i need to learn about. I will get it set right, just will take some time.[/b]
[b]Thank you for everyones help.[/b]
RE: Hard to breath with CPAP and RSD(CRPS) - Gideon - 10-22-2018
Mouth Breathing from our Mask Primer Wiki article.
Mouth Breathing is when you open your mouth and the air pressure from your PAP is venting out your mouth typically showing on your charts as a large leak which can substantially negate the effectiveness of your therapy. It is generally not good. The solution varies depending on the person
With SleepyHead look at your Leak Rate graph where it is shaded (large leak/ LL), flat tops on this graph suggest mouth breathing. In SleepyHead right click on the left header of the Leak Rate graph and click on Dotted Lines then select "Leak Rate Upper Threshold" to get a line across the graph for ResMed. Manually set the value for Philips Respironics. Severity depends on how much over this threshold and for how long it is in the Large Leak territory.
How to manage Mouth Breathing, not in any particular order.
Tongue Trick. Place the tongue on the roof of the mouth, Practice during the daytime. The idea is to train the tongue that this is a good place to be, not overnight, but it works for some.
Cervical Collar. A "soft" Cervical Collar. This helps support and align the neck and keeps the jaw/mouth from dropping. This is becoming a very popular option. Rarely used prior to mid 2016. Users are posting a high success rate with this device. When OA tends to occur in clusters at different times of night. It's an indication that an obstruction may have occurred when the chin tucks towards the chest. It's common, and the solution is either an ergonomic pillow or soft cervical collar that prevents the neck and head from being out of alignment and cutting off the airway, but they can be comfortable, prevent leaks and prevent an airway from closing up due to tucking your chin to chest and other issues.
- Fit: You are looking for a comfortable fit 2-inches larger than the circumference of your neck and just tall enough to support the jaw when your head falls out of alignment (measure your neck from collarbone to jaw and subtract 1".
Chin Strap. A chin strap is to manage mouth leaks from a variety of causes. Most result from the jaw dropping or opening either partially or wider. The chin strap is to gently keep the jaw closed. If you have to crank it shut to make it work this is not the correct solution. Note that your jaw is strong enough to open if it wants to. There is one chinstrap that is notably different than others, the Ultimate Chinstrap, Search for it if you desire.
Ergonomic Pillow or CPAP Pillow, The purpose being to maintain a proper head and neck alignment while allowing for the mask maintaing the seal in multiple positions.
Mouth Guard The concept here is a closed mouth guard to keep the air from leaking out.
Taping. Definitely the most controversial. The purpose of taping is to seal the lips and prevent mouth leaks / mouth breathing. It is not to stop the mouth from opening. I make sure that I can easily open my mouth, when taped, if I need to.
FFM – Full Face Mask or Hybrid Mask. This is a very traditional solution and it is generally effective.
Dry mouth is a symptom mouth breathing that is uncomfortable. It can and does occur with some users of a Full Face Mask.
- Many users use a product called Biotene to get relief from this symptom.
RE: Hard to breath with CPAP and RSD(CRPS) - Biggz - 10-22-2018
Bonjour than you for the reply with all the useful and helpful information