After three sleep studies the impression was:
1.  Obstrutive and Central Sleep Apnea by previous sleep testing
2..Complex sleep apnea by previous sleep testing
3.  Previous CPAP and BiLevel titrations alone were unsuccessful
4.  Sucessful BILevel/oxygen titration with "backup rate required".

It was suggested initiate BiLevel therapy at a pressure of 25/20 cmH20 plus supplemental oxygen at 3 lpm with a backup rate of 12 breaths per minute.  My initial AHI 101/hour
I saw a Pulmonary Dr and he started me on Respironics BiPap M series set at 23/18 with 3 L oxygen.  He did not prescribe the backup rate.  Does anyone know how much of a difference this might make?  I'm using Resmed's Ultra Mirage FF mask.  I woke up after 3 or 4 hrs the first two nights I was able to keep the mask on for 8 hrs.  My present machine does have a "smartcard" even though I don't have the software or reader to use it.  The DME can read it.  Will the smartcard show whether I'm on tract?  Are you suppose to be able to sleep through the night?  Any help would be appreciated.  Thanks
Carol

As I understand it, the backup rate of 12 breaths per minute means that if your device is capable of it it will initiate your breathing to ensure that you take at least 12 breaths per minute which would mean inhalation every 5 seconds, right? My math isn't the greatest.

Yup, the goal is to eventually getting you sleeping a full 7-8 hours a night. That doesn't happen to too many of us right away tho and takes some adjustment time. Lets face it, sleeping w/a mask on our face and air blowing up our noses and down our throats isn't the most natural way to sleep.

I'm not real familiar w/bi-levels, having just got one a couple of months ago, and I'm even less familiar w/just what data the Respironics software does and doesn't  provide since I have a Resmed. It should provide plenty of helpful data tho and that coupled with how you feel should give a decent indication of how you are doing.

When are you scheduled to see your sleep doctor or prescribing doctor again? I'd ask my DME to do a download and printout for me and take the printout to my appointment and plop down in the sleep doc's face and start asking him to explain the data it contains.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

Thanks Crohnie Too for your reply.  I see my Dr in another month.  Believe me, I will be asking a lot of quesstions.  I wasn't too impressed with him the first time I saw him.  He did take an extra year of sleep study and runs his own program.  He did not do my study, but I decided I wanted to have him look at my results and hopefully get me on track.  I had my first test back in Mar and the last one in May.  The first DME did not get me a machine in six weeks!  I have no idea why.  The Dr's office got me a DME that delivered one the same day.  I'm now dealing with a stiff neck.  I am probably so tense with the mask on I gave it to myself.


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AHI=101 Lowest oxygen 73% Started CPAP 7/22/08
Respironics BiPap M 23/18 with 3L oxygen
Resmed Ultra Mirage FF mask
Humidifier set at 3

Well, don't be bashful and be persistent. Be prepared when you see the sleep doc. No one has a more vested interest in your health and your health care than you do. You're paying for his knowledge and expertise, he can spend the time w/you to bring you up to date and to answer your questions - willingly or somewhat reluctantly, what do you care? You're paying for the time.

It might not have been just that first DME, it could have been that sleep lab's sleep doctor dragging his feet getting around to dictating the results and signing off the full scored data summary report and getting it FAXed over to the DME.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

seajay515 I have read some of your previous posts because I was curious about your high pressure and your supplemental O2. I started off on CPAP and then was on BiPAP with O2 like you. My BiPAP was  at 20/16.  I was  just wondering if they had ever mentioned the ResMed VPAP Adapt SV, it is specifically made for Central Apneas and Complex SA. I know I had a very hard time with the high pressures and mask leaks, but this past May they put me on the VPAP ASV and WOW what a difference, my average pressure is  usually around 12.4. and I actually am able to sleep at night! I still am on O2 at 3 lpm. Anyway it took about a year and a half before they finally got it figured out. And I had to change  SA Doctors  (now I have Board certified SA specialist) but it is 100 % better now. I know for me every time they upped my pressures my CA's increased, even on the BiPAP. It took 6 sleep studies and 18 month to get it right. But my sleep center had been recommending the VPAP ASV for over a year, but my first Doc wouldn't listen. Anyway maybe you should ask your Doctor about it, also  you might want to go to the ResMed  web site and look up Central  and Complex Sleep Apnea. There is some good imformation. Good Luck to You


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White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

White Beard.  Thank you so much for your reply.  I was suppose to be tested on the VPAP if they couldn't get the BiPAP to work.  It seems the Insurance won't pay if they can't prove I need that one.  According to the sleep center, I didn't need the VPAP.  Like you I think the high pressure does increase the centrals.  I insisted on a BiPap with a smartcard, so I hope that will tell them something.  I had all the sleep study reports sent to me and have been looking up Centrals and Complex.  I saw what you were using and looked up that machine and it sounds like just what I need.  I tried again last night and the air leaks drove me nuts.  I finally took the mask off and fell asleep without anything.  I'm going to touch base with RT and see what he says.  I don't see the Doctor for another four weeks.  I can't get anyone to discuss the "backup rate".  The sleep study said I needed it, not sure why but they were insistant that it be on the order.  My Doctor said I didn't need it.  I guess I need to contact the sleep center and ask them. Thanks again for the info.  I'm trying to hand in there but I sure hope it doesn't take a year and a half!


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AHI=101 Lowest oxygen 73% Started CPAP 7/22/08
Respironics BiPap M 23/18 with 3L oxygen
Resmed Ultra Mirage FF mask
Humidifier set at 3

seajay515 I am on medicare disability and one of the people at the DME also told me that medicare requires you to be on one thing and if that doesn't work then they can up it to the next and so forth. I think it is such a waste. After my second sleep study the center recommended the VPAP, it took 4 more sleep studies for me before I got it. The thing is, it really makes a difference, it hasn't completely done away with my tiredness and fatigue, but it is heads and tails above anything and everything else I have used! (CPAP & BiPAP) and at least the pressures are manageable.
 How do you stand a pressure of 23?? That amazes me!! At 20 I was so blown away so finally the Doctor agreed to lower it to 18 after a couple months of complaining!  I think he was getting tired of me calling, and then I had the DME calling him. That is when he finally agreed to lower it to 18. which did little or nothing to help the situation!
 seajay515 I really am sorry that you are having to go thru this process, I wish these doctors would have to sleep with a mask on at those high pressures and experience what it is like, and how difficult it is to try to get a mask to seal at those pressures!  I know I found it practically impossible! I had even shaved a good portion of my beard off trying to get a  good seal. But when that failed I let all my whiskers grow back, and just let the darn thing leak! I still wore the mask every night  but I used the Hybrid so I didn't have air going into my eyes! And I kept up my  complaining, then my Doc got sick and they sent me to a different one, and things finally started looking up! I hope you don't have to go thru as many sleep studies as I did nor wait as long!.
 Do try and use your BiPAP as much as you can, even a little is better than nothing! If you can stand the leaks (as long as it isn't in your eyes) then let it leak a little! But do try to use your machine! Hopefully when you see your Doctor he or she will be able to help you! There is allot of good and interesting information on Central Apneas, and from what I have read they are not that easily treated! I do wish you luck seajay keep us posted on your progress!


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White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

White Beard,  I sometimes wonder if the machine I have is really giving me a pressure of 23.  It says it is.  When the mask is not leaking, it really doesn't bother me too much.  I'm a shallow breather and  for the most part, breathe from my nose.  The first night my chest ached after using it.  Not much but I noticed it again the next night.  Twice I have spent 8 hours with the machine but I'm awake too much of the time.  I do use it every night or try to. Last night the bones on my face started to hurt because I had tightened to stop the airleaks.  

I'm on Medicare, too and have no idea what I'm being charged.  I have supplemental insurance, but that doesn't seem to help a whole lot.  They are trying to get $900.00 out of me for the three tests I already had.  The sleep clinic is trying to fight it because they say it should be charged like a Doctor's office visit and  I should only pay my $40.00 copay.

 I'll have to look up that Hybrid.  I don't know anything about it.  Can you see your own data or do you have to take it to the DME?  I was hoping to be able to track my own but I guess that software is next to impossible to get.  

I'll keep plugging away.


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AHI=101 Lowest oxygen 73% Started CPAP 7/22/08
Respironics BiPap M 23/18 with 3L oxygen
Resmed Ultra Mirage FF mask
Humidifier set at 3

seajay515 that doesn't sound right for a co-pay, what good is supplemental insurance if you have to pay that much. Doesn't medicare pay 80% I know I have Tricare as a secondary (I am retired military) and they pay the other 20% I didn't have to pay anything for all my studies! I sure wouldn't think you should have to pay that much! There are allot of threads in this forum about the Hybrid mask along with allot of information on most other masks too!
Yes I even have a pulse-ox connected to my machine, and I can down load  via a smart media card, all the information onto my computer and see it all hour by hour on graphs and make reports, and even sent them to the Doctor or who ever! I had to buy the ResLink and Pulse-Ox myself, as the insurance wouldn't pay for it, and it wasn't cheap! But is great being able to keep track of everything, and my Doctor thinks it is great to be so involved in my care and treatment! I think the software for the Repironics is a bit easier to get than the ResMed software, at least that is what I have heard lately.But from what I understand most of it is available over the internet. Anyway I do wish you luck and hope things work out for you, if I can be of any help, just let me know.


_________________
White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

White Beard,  Well, I just talked to my sleep clinic and they want me to come back for the ASV titration.  I'm not sure who is going to order it.  I've seen so many Doctors!  The Doctor at the sleep clinic might go ahead and order it.  They say I should have had it in the first place.  I want to follow my own treatment with the software.  The one RT told me "you don't need the smartcard, you will be able to tell if it's working!"  I didn't know for forty years I needed help!!!  As far as the insurance goes, my supplimental wants me to pay the Medicare 20%.  Unlike you, my sister and twin brother, I don't have Tricare!  I'm already in the gap for my meds and have to pay full price for them.  This is a crazy world.  You work hard all your life only to be eaten up by Medicare.  Enough of that.

Just to let you know, I did get through 9 hrs last night, but three hours later my face is still hurting.  I guess I never had the mask on that long.  The pressure has created a new canyon in my face along with a black eye and a nose I can't put my glasses on.  Did I really say the pressure didn't bother me????  Back to square one.


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AHI=101 Lowest oxygen 73% Started CPAP 7/22/08
Respironics BiPap M 23/18 with 3L oxygen
Resmed Ultra Mirage FF mask
Humidifier set at 3

seajay515 I am glad they want you to go back for the ASV titration, I wonder if the reason they didn't want to have you on it because of the cost the ResMed  VPAP Adapt SV Enhanced is about $7,600. dollars and the Humidifier is about another $600. at least that is the figures my DME quoted. Medicare paid 80% and my TriCare paid the other 20% My DME didn't want to order that machine  but since the insurance I have they agreed. The ResLink and all the rest I paid for out of pocket the ResLink and Card and Card reader isn't to bad but the Pulse-Ox is very expensive!

Seajay515 I am a little confused what is a supplemental insurance for? if not to pay for what your primary doesn't? Aren't they suppose to pay that other 20%? I mean that is what you have it for isn't it?  will they pay for your new machine if you get one? The ResMed VPAP Adapt SV enhanced does let you see your Leak Rate, AHI, AI, Resp. Rate, VT, MV, Usage, all on the top screen on the machine, so you really don't have to have the ResLink and card reader right away if you don't want! It is nice to have the card & ResLink because you can then see the hour by hour data on your computer!

I am glad that your using your BiPAP, it does sound like you are having a rough time of it, I know what those high pressures are like, I think the ASV would be much better. keep posting I want to know how things work out for you!


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White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

White Beard...Well I just got done talking to the Doctor at the Sleep Clinic.  The ASV titration is out for now.  It appears I have to struggle with the BiPap and pressure for the next three to six months.  He says the ASV won't help me.  I get the central apneas after they apply the pressure.  He said the sore face and black eyes can be addressed.  His quote "I shouldn't throw the baby out with the bath water".  He now wants me to take ambien for sleeping and keep on with the Nasonix even though I can breath just fine through my nose.  I just picked up a prescription for Nasonex that cost me $87.00 because I'm in my Medicare gap when they don't pay anything.  Maybe I'm calling my secondary insurance the wrong thing.  It's considered a Managed Care HMO.  They receive Medicare funding, I think.  I pay $90.00 a month for the HMO on top of my Medicare fee.  My sister has her husband's insurance and doesn't pay a cent for anything.  It just doesn't seem right.  Maybe I should start a thread about insurance and sleep apnea.  I don't want to take the Ambien.  All these Doctors can do is throw pills at you.  I just want to tell them all to go to you know where!


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AHI=101 Lowest oxygen 73% Started CPAP 7/22/08
Respironics BiPap M 23/18 with 3L oxygen
Resmed Ultra Mirage FF mask
Humidifier set at 3

seajay515 I am sorry, did the doctor say why he didn't want to do the ASV titration? Is there any other sleep doctor you can go to? Or is that controlled by the HMO? and is that the reason they won't do the other titration? seajay I am mad for you! I can only imagine the frustration you must be feeling! Is your sleep doctor  board ceritified? I would love to know what his reasoning is, I bet I already know and I bet I am right! If there is anyway you can get a different Doctor I sure would be trying, increasing pressure is not the proper treatment for central apneas ! at least as far as  know! I would like to know why he thinks ASV won't help you, it is made specificially for our type of condition! Sounds like he needs go back to school! Please keep posting and let us know how you are progressing, Good Luck to you seajay!


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White Beard with a White Beard
Resmed VPAP Adapt SV Enhanced, HumidAire 2i, ResLink with Model 8000 Flex sensor Pulse Oximeter, and ResScan 3.5 software. Respironic EverFlo OPI Oxygen Concentrator 3 lpm
EEP 9.0, min PS 6.0, max PS 16.0

seajay515 wrote:

I get the central apneas after they apply the pressure.

Well, that pretty much defines Complex Sleep-Related Breathing Disorder (CSBD) and the need for an alternative plan such as ASV rather than pursuing the present course.  However, looking carefully at the pressure-related central component is essential, including the nature and frequency (e.g, if there's only like 2 central apneas on "ideal" pressure, then maybe it's not a big deal).

However, if you "only" had hypopneas:

seajay515 wrote:

My AHI was 101/hr.  This included 245 obstructive hypopneas and 7 obstructive apneas.

Then this

seajay515 wrote:

they decided I needed BiLevel pressure set at 24/20 plus supplemental oxygen at 3 lpm with a backup rate of 12 breaths per minute.

is a tremendous amount of therapy to be on.  It certainly suggests that a central component was present even on diagnostic.

Colorado, eh?  What is the altitude where you live?

Do you have the complete sleep study results?

M

Hi Morbius,  Thanks for replying.  I have only the written results.  They did send me a one page graph with the 2nd study but that study had alot of problems with air leaks.  The Tech I had didn't know too much.  When I talked to the Sleep Doc yesterday, he said the ASV would not take the pressure I needed.  Maybe after 3 to 6 months if things weren't working out for me, they would try the ASV.  My last study with the 25/20 plus 3l oxygen with a backup rate of 12 breaths per minute, reduced the AHI to 2 events per hour including supine and REM sleep.  They did the study with a Resmed Quantro FF mask and chin strap.  The Sleep Doc tells me my diaphram does not get the signal from my brain to take a breath.  I don't know if that's why I need a backup rate but the Pulmonary Doc didn't think I needed it.  Frankly, I think he just glanced at the three reports and ordered what he wanted.

Yes, I'm in Colorado and am close to 5230 feet up there!


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AHI=101 Lowest oxygen 73% Started CPAP 7/22/08
Respironics BiPap M 23/18 with 3L oxygen
Resmed Ultra Mirage FF mask
Humidifier set at 3