Replies to This Discussion

Permalink Reply by Judy on December 13, 2010 at 10:35pm

I can't vouch for other brands but the Resmeds do best w/a leak rate 0.4 L/M or 24 L/s or less but can compensate up to 40 L/s w/o skewing the data. The therapy data is not reliable when leak rates are above 40 L/s.

 

HOWEVER, w/the Resmeds and the new PR SystemOne CPAPs the Mask Selection must be correct for the mask you are using for the reported Leak rate to be accurate.

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Permalink Reply by Mary Callahan on December 14, 2010 at 10:28am

Thanks for answering Judy. Much appreciated. Can I ask one more thing? What is a leak rate and why is it reported?

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Permalink Reply by Mary Z on December 14, 2010 at 12:55pm

Mary, a full face mask might not be as be as bad as you think.  I use the Respironic FitLife total face mask which goes completely around the face.  If you are having large leaks that could cause your numbers to be all over the place.  You could also try taping your mouth shut with micropore paper tape ( the paper kind only), or blue painters tape.  The right mask is , IMO, the key to successful PAP therapy.  If you can't get the mask to fit with minimal leaks your therapy will not be successful.  I don't suffer from clautrophobia myself, so good luck finding the right mask to get your leaks into acceptable levels.  Glad you are asking so many questions, it shows your dedication to your therapy.

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Permalink Reply by Donna B. on December 15, 2010 at 9:50am

Hi Mary,

I use a Swift Fx too. Is it possible that you were given the wrong size mask ? I have a small and it fits me perfect. I don't have any trouble with leaks. I use the Contour pillow too and it helps keep everything in place. Just wondering....

Donna B.

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Permalink Reply by Mary Callahan on December 15, 2010 at 10:02am

Donna, I tried the small and could barely breathe, and the large was definitely too big. So I use the medium. I was leery about purchasing the contour pillow due to some reviews I saw. It also looks like there is not much room for turning around. The area for the head seems so small. I imagine if one turns over the head falls into the crevice made for the mask. And to throw away what seems like a huge amount of money for a pillow if it does not work, seems a crime. 

 

I also am having trouble using a chin strap at the same time as the mask. I have tried the chin strap both over and under the mask, but neither way seems to work as they pull on each other. And the combined thickness seems to bother the side of my face the few times I tried to sleep on my side.  So I have called the DME guy and have an appointment this Saturday for either a new mask and definitely a new chin strap. 

 

Wish there was an easier way to sleep. This whole thing really stinks. Especially because I am feeling worse and not at all better.

 

thanks!

Donna B. said:

Hi Mary,

I use a Swift Fx too. Is it possible that you were given the wrong size mask ? I have a small and it fits me perfect. I don't have any trouble with leaks. I use the Contour pillow too and it helps keep everything in place. Just wondering....

Donna B.

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Permalink Reply by Donna B. on December 15, 2010 at 9:00pm

Mary,

I'm so sorry you are having such trouble with it all. I struggled with the whole chin strap thing every night for about a week. I would get so frustrated trying to put it on and keep it on ! I was so exhausted in the beginning that every night was such a chore trying to get it all in just the right position. I kept at it though and with the support of my friends here I knew I would have to just take it "one day at a time" instead of looking at it in the long term. I still have some crappy nights but overall I am feeling so much better and I am finally getting my life back.

 

I know it's hard, believe me I do. Education is the key and you will find it here. Keep asking girl, you can do it.

Donna B.

Mary Callahan said:

Donna, I tried the small and could barely breathe, and the large was definitely too big. So I use the medium. I was leery about purchasing the contour pillow due to some reviews I saw. It also looks like there is not much room for turning around. The area for the head seems so small. I imagine if one turns over the head falls into the crevice made for the mask. And to throw away what seems like a huge amount of money for a pillow if it does not work, seems a crime.

 

I also am having trouble using a chin strap at the same time as the mask. I have tried the chin strap both over and under the mask, but neither way seems to work as they pull on each other. And the combined thickness seems to bother the side of my face the few times I tried to sleep on my side.  So I have called the DME guy and have an appointment this Saturday for either a new mask and definitely a new chin strap.

 

Wish there was an easier way to sleep. This whole thing really stinks. Especially because I am feeling worse and not at all better.

 

thanks!

Donna B. said:

Hi Mary,

I use a Swift Fx too. Is it possible that you were given the wrong size mask ? I have a small and it fits me perfect. I don't have any trouble with leaks. I use the Contour pillow too and it helps keep everything in place. Just wondering....

Donna B.

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Permalink Reply by Mary Callahan on December 15, 2010 at 9:37pm

I don't know, Donna, I am ready to throw in the towel. If I felt a little bit better, it would be easier to hang in there. But every day I feel worse. If I don't hear from the sleep doc tomorrow, I just might toss it. And if all he has to say is, "It just takes time'" I will fire him. Someone has got to help me feel better, even just a little.

 

I am such a light sleeper, that all the breathing noises bother me, the fact that I cannot turn over and sleep on my side bothers me, that the darn headgear and chinstrap hurt and make my upper lip and chin red and my nose sore, it's getting to be more than I can handle at this time.

 

All I want to do is sleep deeply and feel good in the morning. I used to when I could use a very strong sleep med. But the insurance co. stopped paying for it, and at $2700 a month I cannot afford it. This whole sleep thing is so frustrating.

 

But thanks for the vote of confidence. I'm just so frustrated with feeling worse every day.

Donna B. said:

Mary,

I'm so sorry you are having such trouble with it all. I struggled with the whole chin strap thing every night for about a week. I would get so frustrated trying to put it on and keep it on ! I was so exhausted in the beginning that every night was such a chore trying to get it all in just the right position. I kept at it though and with the support of my friends here I knew I would have to just take it "one day at a time" instead of looking at it in the long term. I still have some crappy nights but overall I am feeling so much better and I am finally getting my life back.

 

I know it's hard, believe me I do. Education is the key and you will find it here. Keep asking girl, you can do it.

Donna B.

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Permalink Reply by RockRpsgt on December 16, 2010 at 2:28am

Mary please do not give up! You have taken a tough road with auto-titration, but it can be done.

 

Many different things can affect the way you sleep. Our body begins the journey back to sleep the moment we wake up. The different situations that we encounter throughout the day can influence our night's sleep. Mood, biological cycles, work, daily routines, and even the cycles of the moon can influence our sleep. This is why we look for trends rather than one night averages when we evaluate sleep.

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Permalink Reply by Donna B. on December 16, 2010 at 7:27am

Mary,

If your Doc does say that then I would definitely fire him. If you are not getting the help you need from him, it is time to find another Doc.( I fired mine ! )

You will find it easier to sleep once you get a machine that is tailored to your specific numbers. I found it very difficult on the APAP trial, it was a long 4 weeks. When I got my CPAP I found I slept better the first night. Remember though I have been at this since September, in just 3 months of use I feel an 80% improvement in my sleep and daytime alertness has returned.

I feel your frustration and it is easy to get depressed over all of this, I was there, I wanted to give up but I knew  deep down that I was not going to let this OSA beat me. It is a tough road to navigate but with the right Doc and therapy you will see improvement. I promise you, you will.

IMO: If the noise from the hose bothers you, why not try those little foam ear plugs? They're soft and comfy and should help with the distraction of the air noise. Just a thought.

 

Donna B.

Mary Callahan said:

I don't know, Donna, I am ready to throw in the towel. If I felt a little bit better, it would be easier to hang in there. But every day I feel worse. If I don't hear from the sleep doc tomorrow, I just might toss it. And if all he has to say is, "It just takes time'" I will fire him. Someone has got to help me feel better, even just a little.

 

I am such a light sleeper, that all the breathing noises bother me, the fact that I cannot turn over and sleep on my side bothers me, that the darn headgear and chinstrap hurt and make my upper lip and chin red and my nose sore, it's getting to be more than I can handle at this time.

 

All I want to do is sleep deeply and feel good in the morning. I used to when I could use a very strong sleep med. But the insurance co. stopped paying for it, and at $2700 a month I cannot afford it. This whole sleep thing is so frustrating.

 

But thanks for the vote of confidence. I'm just so frustrated with feeling worse every day.

Donna B. said:

Mary,

I'm so sorry you are having such trouble with it all. I struggled with the whole chin strap thing every night for about a week. I would get so frustrated trying to put it on and keep it on ! I was so exhausted in the beginning that every night was such a chore trying to get it all in just the right position. I kept at it though and with the support of my friends here I knew I would have to just take it "one day at a time" instead of looking at it in the long term. I still have some crappy nights but overall I am feeling so much better and I am finally getting my life back.

 

I know it's hard, believe me I do. Education is the key and you will find it here. Keep asking girl, you can do it.

Donna B.

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Permalink Reply by Judy on December 16, 2010 at 8:27am

Mary, you might want to consider the old Respironics Simplicity simple nasal cushion w/the less expensive white Respironics simple chin strap. NOT the white Respironics Deluxe chin strap. The less expensive one is just one strap w/a soft, silky chin "saddle". When I used this pairing I was able to leave the chin strap positioned right on the headgear of the Simplicity and use them as a one piece mask easy to put on each night w/o constant adjustments.

 

I've been reading of some problems w/the soft cushions of the Swift FX having to do w/them degrading so soon and collapsing during use. There's been a long thread or two about this at cpaptalk.com. Maybe 2-3 months ago.

 

How long ago has it been that you had to give up the strong sleep med that seemed to work for you? Did you have to give it up cold turkey or were you able to taper off of its use? Sometimes there is a "rebound" effect when a med is discontinued and the problem we were using the med to treat becomes worse. And there are quite a few meds that shouldn't be stopped cold turkey but rather tapered off of its use.

 

What brand and model CPAP are you using? Do you know what the pressure setting(s) are? As I mentioned earlier to get an accurate reported Leak rate the Resmeds require a proper Mask Selection be set and the new PR SystemOnes also require a proper Mask Selection to get an accurate reported Leak rate. Frankly, the reported Leak rates you mentioned aren't excessive and your CPAP should be able to compensate nicely for them and still report accurate data. IF your leaks actually are excessive it is possible that your CPAP is chasing the leaks to compensate and thus providing more pressure than is comfortable for you. OR it may not be able to compensate, therapy is lost thru the leaks and you aren't getting enough pressure for adequate therapy. You really need a sleep profession, whether DME provider's RRT or the sleep doctor or knowledgeable sleep lab staff member to help you sort out the problem(s).

 

Did you ever ask for and get the full scored data summary report w/condensed graphs which consists of some 5 plus pages of data? You may have an additional sleep problem(s) in conjunction w/OSA that your sleep doctor opted to see if CPAP therapy would reduce it/them before addressing them too.

 

I would be inclined to ask your DME provider to do a COMPLETE download and printout of your data so far. If your CPAP is fully data capable that should provide some answers.

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Permalink Reply by Mary Callahan on December 16, 2010 at 10:15am

Judy, When I go to the DME on Saturday I will try and request the Respironics Simplicity and their simple chin strap. I will also ask if he can print out the complete data to this point--it has only been 2 weeks though. Thanks!

 

As far as the sleep med I take, there is no rebound with it as it leaves your body in less than 6 hours, that is why you even have to take it 2x a night for it to work. The medicine is sodium oxybate and it renders one unconscious. That is the only way I can get deep sleep. It is also the only sleep medicine that worked for me without any side effects at all. And I have tried Elavil, Trazadone, Senequin, Ambian to name a few.

 

Besides the new dx of OSA, I have had lifelong insomnia most likely brought on by PTSD. Too much abuse and trauma in my life, I think it has left my brain damaged. And some of this is probably why I am having such difficult "adjusting" to my machine and mask. The rest is the doc and the DME just keep saying "get used to it" without any real help.

 

I am using a resmed S9 auto. I am using a certified Sleep Doc who also specializes in PTSD, fibromyalgia and  especially UARS which is more than likely what I also have (my sleep study showed 3 apneas, 52 hypopneas and 27 other awakenings not due to leg movements, and then there were also RERA's as well).

 

I tried getting the full summary and graphs from my first study in September, but the place said they didn't have that software. That is one of the reasons I changed places after that to another sleep center, that first place was so unprofessional.

 

Thanks for all your time in trying to help me get through all this without giving up.

 

Judy said:

What brand and model CPAP are you using? Do you know what the pressure setting(s) are? ... You really need a sleep profession, whether DME provider's RRT or the sleep doctor or knowledgeable sleep lab staff member to help you sort out the problem(s).

Did you ever ask for and get the full scored data summary report w/condensed graphs which consists of some 5 plus pages of data? You may have an additional sleep problem(s) in conjunction w/OSA that your sleep doctor opted to see if CPAP therapy would reduce it/them before addressing them too.

I would be inclined to ask your DME provider to do a COMPLETE download and printout of your data so far. If your CPAP is fully data capable that should provide some answers.

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Permalink Reply by Tom Cannon on December 23, 2010 at 3:58pm

Hi Rock

 

Why did you refer to auto-titration as "tough road"? I'm curious because I'm considering the ResMed S9.

 

THanks, Tom

Rock Hinkle said:

Mary please do not give up! You have taken a tough road with auto-titration, but it can be done.

 

Many different things can affect the way you sleep. Our body begins the journey back to sleep the moment we wake up. The different situations that we encounter throughout the day can influence our night's sleep. Mood, biological cycles, work, daily routines, and even the cycles of the moon can influence our sleep. This is why we look for trends rather than one night averages when we evaluate sleep.

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