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Permalink Reply by Belinda Haman on September 17, 2009 at 11:40am

Rock:

You know some docs think they know it all--No my doc doesn't feel the need to do a titration study--well I have increased my levels 7to12 on my own without his approval as per recommendation on this site.....I still have lip flutters but I see a decrease in them.....I told him that I think I would do better on straight cpap--his arguement is my data showed I do better on auto-set--I was very blunt in telling him that I felt like he didn't give me enough time on the straight cpap--he said no that I need to stay on auto-set......I really wish I had this information about auto-set machines prior to my doc prescribing auto-set......

My data also showed that I am not going past 10 during my apnea events....I go back to see him in six weeks.....in the meantime I am going to try to get a titration study elsewhere in the city ....I know how to change my machine to straight cpap--(do you know where I am going with this??? lol....I am very tempted to change it back to straight cpap myself--but unsure of the consequences........

If you could advise me on this I would appreciate it......:)

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Permalink Reply by RockRpsgt on September 17, 2009 at 12:29pm

We have to hope that are docs know what is best for us, and assume that they have the proper training to apply what they know to our situation. I believe that your PCP is doing what he thinks is right for you. It would be wrong of me to go against that advice. I can understand with the technology of the APAP machines why a doctor would think that a titration study might not be needed. I personally do not feel that way. It is not that you can't titrate someone like this. It just takes longer, and in my opinion is harder on the patient. Belinda you have a decision to make. Either stick with, and commit to your current physician, or switch doctors. Switching docs may set you back even more in your therapy. You may get lucky and find a super doc. Either way it is a crap shoot at this point. The thing to remember is that the sleep you are getting now is better than what you were getting before.

Belinda Haman said:

Rock:

You know some docs think they know it all--No my doc doesn't feel the need to do a titration study--well I have increased my levels 7to12 on my own without his approval as per recommendation on this site.....I still have lip flutters but I see a decrease in them.....I told him that I think I would do better on straight cpap--his arguement is my data showed I do better on auto-set--I was very blunt in telling him that I felt like he didn't give me enough time on the straight cpap--he said no that I need to stay on auto-set......I really wish I had this information about auto-set machines prior to my doc prescribing auto-set......

My data also showed that I am not going past 10 during my apnea events....I go back to see him in six weeks.....in the meantime I am going to try to get a titration study elsewhere in the city ....I know how to change my machine to straight cpap--(do you know where I am going with this??? lol....I am very tempted to change it back to straight cpap myself--but unsure of the consequences........

If you could advise me on this I would appreciate it......:)

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Permalink Reply by Judy on September 17, 2009 at 2:18pm

I've never gotten around to taping my lips so I can't say. A LOT of members at the cpaptalk forum tape and are firm believers in it. What I DID do for a while that worked great for me (but I was too lazy to continue doing so since I was and am feeling pretty good) was to spread a thin layer of PoliGrip Denture Gel from one corner of my mouth to the other and then press my lips together. That sealed them but I could open them easily w/no discomfort if I needed to. And if I did open my mouth I could easily reseal my lips by moistening them w/my tongue and pressing them together again. Its safe, the denture gel is made to go in your mouth on tender mouth surfaces. It isn't a strong enough seal to prevent actual mouth breathing if you're one who tends to open your mouth during the night to breathe. But it does work great for the lip flutters. Its just that my bedtime routine is long enough and involved enough as it is w/o adding yet another step regardless how simple. When I'm tired and want to go to bed I want to go NOW not 5 minutes from now, but NOW. What can I say?? I'm a lazy son of a gun.

Hey, I wouldn't part w/that Resmed S8 AutoSet Vantage or S8 AutoSet II for anything!!!! The great thing about Autos is that they CAN be used in straight CPAP mode, whereas a straight CPAP can NOT be set to Auto mode!!!! I'm a FIRM believer in ONLY a fully data capable xPAP, whether it is an APAP or not isn't as important to me. But - forgive me, Rock Hinkle, my hero - I disagree w/you completely about APAPs. ESPECIALLY if one is stuck w/an unresponsive or so-so sleep doctor. There ARE those who actually do MUCH better w/the adaptability of an APAP, and there are some who do better w/o the pressure fluctuations. It depends on the individual.

Do NOT let data from some device sidetrack you. How you FEEL and are feeling is a lot more indicative. Trust your body and what it is telling you. You're feeling better, your data is better than it was w/o xPAP ... what more do you need or want? You will continue to improve as you get more acclimated to CPAP therapy and as you do a little "tweaking" to find your "sweet spot" of therapy settings, mask and accessories. Rome wasn't built in a day.

What the hay, if you want to try straight CPAP mode - GO FOR IT! Its your health and YOUR therapy. Its not like you are changing your therapy settings willy-nilly every night w/no idea of what you are doing.You've had some good suggestions from some pretty savvy people. Try them in the order of what seems to fit your situation best. You can always go back to your original settings or to settings that worked better for you if a change doesn't seem to work out. Just be sure to give each change sevral nights before evaluating it - unless the first night is a disaster for no known reason except that you made a change.

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Permalink Reply by Belinda Haman on September 17, 2009 at 2:36pm

Hey Judy:

I really enjoy your replies....I am going to the store to get some of that PoliGrip denture gel, this forum is full of wonderful advice....would have never thought of that one on my own.

Not sure if I will mess with my settings or not.....I do however; like it better set at 7 than 4 for sure--like you said I need to listen to my body it is telling me..... it is feeling better than before....yes still room for improvement but, I think those of us who have went through the worst of the worst with sleep apnea this improvement is sooooooooooo appreciated--look forward to more good feelings in the future yahoo!!!!!

Thanks again Judy :)

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Permalink Reply by Judy on September 17, 2009 at 3:01pm

I can't take credit for the denture grip gel tip. I read about it at apneasupport.com, tried it and it worked for me! That was one reason I help off trying a chin strap. I couldn't see where a chin strap would stop the lip flutters and I was sure I wasn't opening my mouth to breathe anymore because the noise and surprise I got when I did whilst awake surely would have woke me up if I opened my mouth in my sleep. Besides my sleep doctor and my RRT weren't concerned, despite my bringing up my Leak data on more than one occasion.

Ha! So much for what "I" know about when I'm sleeping. The chin strap DEFINITELY reduced my Leak rate. - But it hasn't stopped the lip flutters so obviously I WAS opening my mouth and mouth breathing during the night even tho it wasn't waking me up.

And, sooner or later, I really think it would be worth your while to change to straight CPAP mode and just see what kind of data and how you feel for at least 4-5 nights - unless the first night is a disaster. Just beware "the first night effect". It can fool you. I know I liked straight CPAP mode, even w/my AutoSet Vantage, despite straight bi-level mode isn't working as well as auto bi-level mode w/my VPAP Auto.

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Permalink Reply by RockRpsgt on September 17, 2009 at 3:56pm

"Hey, I wouldn't part w/that Resmed S8 AutoSet Vantage or S8 AutoSet II for anything!!!! The great thing about Autos is that they CAN be used in straight CPAP mode, whereas a straight CPAP can NOT be set to Auto mode!!!! I'm a FIRM believer in ONLY a fully data capable xPAP, whether it is an APAP or not isn't as important to me. But - forgive me, Rock Hinkle, my hero - I disagree w/you completely about APAPs. ESPECIALLY if one is stuck w/an unresponsive or so-so sleep doctor. There ARE those who actually do MUCH better w/the adaptability of an APAP, and there are some who do better w/o the pressure fluctuations. It depends on the individual"

What is best for the patient, and what the pt is comfortable with are generally 2 different things Judy. Titrating a pt with an auto-pap does not do the patient any favors. Too much guess work. A straight pressure that prevents all events from ocurring is what is best. Now i do understand that this is not what is comfortable with alot of my pts. In order for an APAP to properly prevent events the lowest pressure setting should be the the oone that makes all events go away. If you want it to have some wiggle room after that so be it. By setting the range below optimal pressure a Dr/RT/RPSGT is saying that it is ok for you to have events.

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Permalink Reply by RockRpsgt on September 17, 2009 at 4:15pm

if you look at AHIs of patients on autos you will typically find that they run a little higher. Especially if the range is left unrestricted. Now if you restrict the auto say to a range of 2 to 3, which is where most patients benefit, you are basically turning it back to a straight pressure. So I will not argue with you on that one Judy. When an auto is restrricted to the pts optimal pressure range they will do well in auto mode because it is basically a straight pressure. I guess we can save my views on Resmed's weaknesses for another discussion.

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Permalink Reply by Judy on September 17, 2009 at 4:19pm

Oh, hell, Rock Hinkle. NO WAY did I mean that titrating a patient w/an APAP was preferable to an in-lab titration!!!! I'm too aware of the multiple sleep disorders that can occur concurrent w/OSA and as much as I love my Resmeds, I have a WHOLE LOT more faith in a good sleep tech than I do ANY manufacturer's APAP. Maybe I misunderstood or didn't make clear my opinion on APAPs. I just meant, I think providing patients w/an APAP AFTER having had an in-lab evaluation AND titration is a GOOD idea. I am not even a fan of in-lab split-night studies.

I probably only used my Resmed S8 AutoSet Vantage in Auto mode 4-5 nights. Just enough to sneak a peek and to "tweak" my settings a little. But when you've had an in-lab titration or a recent in-lab titration and then lose weight or find what had been good therapy going to the dogs, an APAP is a nice way to do some minor tweaking w/o an expensive in-lab re-titration that you have to wait a couple of months for. I think the key to the most successful APAP use is having an in-lab titrated pressure to work around. The trouble is too many times patients are sent home w/a APAP with a wide open pressure range.

I've run into just the opposite w/my VPAP Auto. But even so I had an in-lab bi-level titration FIRST and then started therapy w/the VPAP Auto BUT it was set to my lab titrated pressures even tho I was started w/it in Auto mode.

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Permalink Reply by RockRpsgt on September 17, 2009 at 4:30pm

I agree. should we talk about the Resmed machines now. they are horrible in auto mode. i better go hide before jnk throws something at me.

Judy said:

Oh, hell, Rock Hinkle. NO WAY did I mean that titrating a patient w/an APAP was preferable to an in-lab titration!!!! I'm too aware of the multiple sleep disorders that can occur concurrent w/OSA and as much as I love my Resmeds, I have a WHOLE LOT more faith in a good sleep tech than I do ANY manufacturer's APAP. Maybe I misunderstood or didn't make clear my opinion on APAPs. I just meant, I think providing patients w/an APAP AFTER having had an in-lab evaluation AND titration is a GOOD idea. I am not even a fan of in-lab split-night studies.

I probably only used my Resmed S8 AutoSet Vantage in Auto mode 4-5 nights. Just enough to sneak a peek and to "tweak" my settings a little. But when you've had an in-lab titration or a recent in-lab titration and then lose weight or find what had been good therapy going to the dogs, an APAP is a nice way to do some minor tweaking w/o an expensive in-lab re-titration that you have to wait a couple of months for. I think the key to the most successful APAP use is having an in-lab titrated pressure to work around. The trouble is too many times patients are sent home w/a APAP with a wide open pressure range.

I've run into just the opposite w/my VPAP Auto. But even so I had an in-lab bi-level titration FIRST and then started therapy w/the VPAP Auto BUT it was set to my lab titrated pressures even tho I was started w/it in Auto mode.

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Permalink Reply by Judy on September 17, 2009 at 5:10pm

No need to run and hide, Rock Hinkle! But I DO think that most of the problems w/the Resmeds prior to the S8 IIs was as much because too many were trying to use their Respironics experience in setting Resmed APAPs. And even in trying to convert an in-lab titration on Respironics equipment to settings for at home use of Resmed equipment. I really think lack of familiarity w/the Resmed algorhythm and settings requirements is the biggest problem for the Resmeds. But what do I know, I'm just a patient!! And I LIKE my Resmeds. And yes, I've used and owned a Respironics pre-M Series Auto w/C-Flex and do have a Respironics pre-M Series Bi-PAP Auto w/Bi-Flex as a backup/travel bi-level. The pre-M Series were/are a better device than the M Series and there were enough things I wasn't wild about w/the pre-M Series from this user's point of view that I wouldn't even consider an M Series. If an M Series were GIVEN to me I'd trade it in for a different brand. Now, this new PR SystemOne ..... when and if they come out w/a SystemOne Bi-PAP .... you wouldn't need to twist my arm too hard to try one!!!!! Not too hard at all!!!

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Permalink Reply by RockRpsgt on September 17, 2009 at 6:08pm

I think that the problem lies in the algorithm. Resmed left out too many variables. the formula is set up to treat apneas, not hyponeas. This to me would either make the pt require more personal time with their PCP, or push a pt to self titrate. Both choices have the potential to bog down the system even more than it already is. I think that they are a great company. Nothing beats a Resmed mask in a pinch. Since starting my career in sleep 9 members of my family have been put on PAP. 3 on auto-pap. I did not allow one of them to get a Resmed machine. for me, as a tech, it just came down which machine is better. In my opinion Respironics is winning the game right now. Still early though. The new covidien machines are getting alot of attention. The new merger between Embla/Covidien could up the game quite a bit.

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