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Originally to "Smitty" in "Can't do..." post
Sorry, I didn't realize that the thread was closed, so maybe this can help others! Smitty, if you read this, it was meant as a reply to your problem with CPAP tolerance.
Smitty - I have not read through all the comments to your problem, so I can only hope I'm able to provide you with some insight from a different perspective - the RT/sleep tech/DME provider non-user side of things :)
First of all - you can sooooo do this! Rarely does anyone like CPAP/BiPAP therapy in the beginning. It's just not natural to have gale force winds blowing up your sinuses!!! Please don't give up, take it very slowly, and if you can only wear it for 20-30 mins per night for the first while, THAT'S OK. Do NOT consider this as failing. Wear it a few times during the day, beginning at ramp pressure with CFlex on 3 going up until you can no longer stand it. Do something else during this time to help take your mind off it - watch a good movie, do a puzzle, whatever you enjoy that occupies your mind. This helps you get used to the pressure a little faster.
Secondly - with your CPAP pressure at +18, you are more than likely qualified for BiPAP. (Can't say whether you are or not, I'm not an MD, nor an insurance company LOL). When I was doing sleep studies, my cut-off for CPAP was 12-13 cmH2O, then if the patient was still having events, I switched to BiPAP (with a quick note for insurance purposes regarding discomfort with CPAP pressures, etc. that I made up, if needed, to fulfill their requirements for payment. I'd MUCH rather have a patient comfortable and compliant with therapy than have an insurance company direct what they will/will not pay for. Grrrrrrrr...). BiPAP better simulates natural breathing, so will probably be more comfortable for you. Your sleep doctor might be able to look at your study results and find out the settings needed to keep your airway open and eliminate most/all the other events- without you having to go through another study.
With your pressures, I don't think a pillow mask (I know that's not what you have now) is appropriate as you may feel like it's blowing off your face! Some people feel that pillows seem to "increase" the pressure simply because of the directed flow up your nostrils, vs. a nasal for full face mask where it is more diffuse. You definitely don't need to feel any more pressure! If you want to stick with a nasal mask, maybe try the ResMed Mirage Activa LT. This mask seals like nobody's business! You can push on it, disconnect one of the straps, and it STILL seals. It's wonderful. I'm still waiting for them to come out with a Full Face Activa, and when they do, I will likely recommend it exclusively. Right now, I think the Respironics Gel FFM and the ResMed Liberty (hybrid FFM with nasal pillows and mouth cushion) are both good choices, and I have had a lot of success with both with my patients.
HOWEVER!!!!!! It doesn't matter what mask you use, it matters ONLY that you're comfortable with it. And that's it. Every major mask manufacturer offers a 30-day guarantee that states if within the first 30 days of your use of their mask you don't like the mask for whatever reason, they will switch you to another, from any manufacturer. Your DME provider will have this information, and should be able to show you different masks to try. Your insurance covers a new mask every 90 days, so you are never stuck with a mask for longer than that.
Finally - surgery does not work. Sorry. It is brutal, and recovery is long and painful, and it just does not work more than 30% of the time, with the majority of the "successes" having to come back a couple of years down the road and get CPAP anyway, as their symptoms have returned. And, to add insult to injury (literally!!!) you've gone through all that pain and removed all the "stuff" that CPAP supports so you'd likely have to have higher pressures than before the surgery.
I hope some little bit of this rambling message helps you! We are all pulling for you!!!!!!
PS - remember to have your follow-up study about 6 months after continuous use (this is when your pressures will change most drastically) and then about every 2 years after.
OK. I'm done. :)
Smitty - I have not read through all the comments to your problem, so I can only hope I'm able to provide you with some insight from a different perspective - the RT/sleep tech/DME provider non-user side of things :)
First of all - you can sooooo do this! Rarely does anyone like CPAP/BiPAP therapy in the beginning. It's just not natural to have gale force winds blowing up your sinuses!!! Please don't give up, take it very slowly, and if you can only wear it for 20-30 mins per night for the first while, THAT'S OK. Do NOT consider this as failing. Wear it a few times during the day, beginning at ramp pressure with CFlex on 3 going up until you can no longer stand it. Do something else during this time to help take your mind off it - watch a good movie, do a puzzle, whatever you enjoy that occupies your mind. This helps you get used to the pressure a little faster.
Secondly - with your CPAP pressure at +18, you are more than likely qualified for BiPAP. (Can't say whether you are or not, I'm not an MD, nor an insurance company LOL). When I was doing sleep studies, my cut-off for CPAP was 12-13 cmH2O, then if the patient was still having events, I switched to BiPAP (with a quick note for insurance purposes regarding discomfort with CPAP pressures, etc. that I made up, if needed, to fulfill their requirements for payment. I'd MUCH rather have a patient comfortable and compliant with therapy than have an insurance company direct what they will/will not pay for. Grrrrrrrr...). BiPAP better simulates natural breathing, so will probably be more comfortable for you. Your sleep doctor might be able to look at your study results and find out the settings needed to keep your airway open and eliminate most/all the other events- without you having to go through another study.
With your pressures, I don't think a pillow mask (I know that's not what you have now) is appropriate as you may feel like it's blowing off your face! Some people feel that pillows seem to "increase" the pressure simply because of the directed flow up your nostrils, vs. a nasal for full face mask where it is more diffuse. You definitely don't need to feel any more pressure! If you want to stick with a nasal mask, maybe try the ResMed Mirage Activa LT. This mask seals like nobody's business! You can push on it, disconnect one of the straps, and it STILL seals. It's wonderful. I'm still waiting for them to come out with a Full Face Activa, and when they do, I will likely recommend it exclusively. Right now, I think the Respironics Gel FFM and the ResMed Liberty (hybrid FFM with nasal pillows and mouth cushion) are both good choices, and I have had a lot of success with both with my patients.
HOWEVER!!!!!! It doesn't matter what mask you use, it matters ONLY that you're comfortable with it. And that's it. Every major mask manufacturer offers a 30-day guarantee that states if within the first 30 days of your use of their mask you don't like the mask for whatever reason, they will switch you to another, from any manufacturer. Your DME provider will have this information, and should be able to show you different masks to try. Your insurance covers a new mask every 90 days, so you are never stuck with a mask for longer than that.
Finally - surgery does not work. Sorry. It is brutal, and recovery is long and painful, and it just does not work more than 30% of the time, with the majority of the "successes" having to come back a couple of years down the road and get CPAP anyway, as their symptoms have returned. And, to add insult to injury (literally!!!) you've gone through all that pain and removed all the "stuff" that CPAP supports so you'd likely have to have higher pressures than before the surgery.
I hope some little bit of this rambling message helps you! We are all pulling for you!!!!!!
PS - remember to have your follow-up study about 6 months after continuous use (this is when your pressures will change most drastically) and then about every 2 years after.
OK. I'm done. :)
Views: 38
Replies to This Discussion
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Permalink Reply by Stephane Bergeron on
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Good post Kristen!
I myself am a month into my therapy and one of the reason I think I'm adapting this well is my ResMed Activa LT mask. It does seal very well and I barely feel it on my face. The straps are loose and I have very little marks on my face in the morning. I was afraid it wouldn't work for me because I use to mouth breathe before, probably because I was gasping for air so much (was diagnosed with severe apnea at 42-45 events an hour). But, in a month, I have been able to avoid mouth leaks without the help of chin straps or anything special. My machine is set to a wide range though, starting very low (originally 4 to 18) and my average pressure is in the 6 to 8 range.
I was originally titrated at 15 though but here they often send patients home with an APAP and monitoring equipment. Rock called that "trial by CPAP" when I described the process to him when I started participating here a month ago. My mask leaked like crazy during my titration and I would wake up with high pressure blowing in my face trying to re-adjust my mask so, in my case, I do believe the titrated pressure was artificially high. For example, last night my pressure has hovered around 6-7 most of the night and my AHI was 1. I even had a night at AHI 0.7 a couple weeks ago. My worst night so far was 3.7 and my pressure never went beyond 11 (very shortly) during the last month and I have slept with my machine and mask on every night for 7 hours on average.
If I would be "stuck" with a straight CPAP set to 15 or more as I might have had if I hadn't done my research and insisted my doctor prescribe an APAP, I might be struggling a lot more myself. So maybe in Smitty's case, a "second opinion" titration might be in order?
In any case, I know that treating my Apnea is primordial for my health so, if my therapy conditions were harder for me than they are now, I'd still fight through it as my health and ultimately my life depend on it. I realized I'm one of the lucky ones and it is easy for me to say but, I don't feel I have a choice. As easy as I'm having it, I'm still far from thrilled to have to wear a mask every night, but the alternative for me is unthinkable...
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