1st Night Using Vpap St.. Need Advice Now.. Please!!!

TmjTerri · Post by **TmjTerri** » Tue Sep 21, 2010 9:24 pm

Ok, I have severe complex sleep apnea and need oxygen at night. My pressures are 17/30. I was diagnosed back in December and have had my machine for a few months now and have tried it a several times with no luck at all. For some reason I end up taking the mask off in the middle of the night. Actually, I hate using it. The mask is annoying, I feel like I am not getting any air despite the high pressure and it is just not comfortable. So, I do not use it and am living miserably every day. My doctor ordered a over night pulse ox test and I have to use my machine tonight with the pulse ox. To be honest, I do not know how I am going to make it through the night. This whole process has been so difficult for me to get used to and I don't know what to do. I have posted on here before and have been told by alot of folks that I need to use my machine or I am asking for a death wish. I understand the seriousness of my condition and that I have to get used to my machine and use it nightly. For some reason it has been the most difficult thing to adapt to. Any advice would be helpful as tonight I am going to use it. Thanks all for your responses. ~Tired Terri

ozij · Post by **ozij** » Tue Sep 21, 2010 9:54 pm

TmjTerri wrote:Ok, I have severe complex sleep apnea and need oxygen at night. My pressures are 17/30. I was diagnosed back in December and have had my machine for a few months now and have tried it a several times with no luck at all. For some reason I end up taking the mask off in the middle of the night. Actually, I hate using it. The mask is annoying, I feel like I am not getting any air despite the high pressure and it is just not comfortable. So, I do not use it and am living miserably every day. My doctor ordered a over night pulse ox test and I have to use my machine tonight with the pulse ox. To be honest, I do not know how I am going to make it through the night. This whole process has been so difficult for me to get used to and I don't know what to do. I have posted on here before and have been told by alot of folks that I need to use my machine or I am asking for a death wish. I understand the seriousness of my condition and that I have to get used to my machine and use it nightly. For some reason it has been the most difficult thing to adapt to. Any advice would be helpful as tonight I am going to use it. Thanks all for your responses. ~Tired Terri

Terri, the machine in your profile, S8 VPAP™ ST BiLevel Machine is not the optimal one for treating severe complex sleep apnea. The optimal machine is the type called ASV, and functions differently. As a matter of fact, intolerance of CPAP (and bi-level) therapy and mask removal are considered signs of possible complex sleep apnea. If the machine in your profile is the machine you have, I don't think you can get used to it. Ask your doctor about an ASV titration.

For tonight - just use the machine the way you can. Remove the oximeter each time you remove the mask -- so the doctor and you will know the state of your oxygenation when you feel the need to remove the mask.

They may have started you on a VPAP S/T because failure of VPAP S/T therapy may have to be proven to the insurance before insurance approves of an ASV.

If the doctor pooh pooh's the ASV issue, look for another doctor.

Wulfman · Post by **Wulfman** » Tue Sep 21, 2010 9:59 pm

I would suggest asking your doctor to reduce your pressures to something "reasonable" while you try to get used to this new way of sleeping. "Some" pressure is better than none (the way you were sleeping before and when you're taking it off during the night). These doctors are idiots if they think anybody can adapt to sleeping with high pressures right off the bat.

Edit: After reading ozij's post, I agree with her thoughts, too.

Den

TmjTerri · Post by **TmjTerri** » Tue Sep 21, 2010 10:19 pm

The optimal machine is the type called ASV, and functions differently

Thank you for your advice. For some reason I was told that this was the most complex machine for complex sleep apnea. If that is not true it really bothers me that I do not have the correct machine for my condition. Just out of curiosity I checked my pulse ox without using the machine and my numbers was in the low 90's with room air. I am going to take your advice and talk to my doctor. This thursday I have an appointment to see him. Can you tell me if the ASV machine can record data so I can keep track and be able to see how I am doing? Thanks again, Terri

rested gal · Post by **rested gal** » Tue Sep 21, 2010 10:24 pm

ozij wrote:Terri, the machine in your profile, S8 VPAP™ ST BiLevel Machine is not the optimal one for treating severe complex sleep apnea. The optimal machine is the type called ASV, and functions differently.

ozij is right.

ozij wrote:If the machine in your profile is the machine you have, I don't think you can get used to it.

I agree. If that's the machine you have, and if you have been correctly diagnosed as having Complex Sleep Apnea, I don't think you can get "used to" the machine you were given. An ASV (Adapt Servo Ventilator) machine is much more likely to suit someone who truly has Complex Sleep Apnea. I'd be asking the doctor if the centrals got worse when CPAP was used during your titration sleep study. ("Titration" being when they put a mask on you during the sleep study.)

ozij wrote:Ask your doctor about an ASV titration.

Very good suggestion.

ozij wrote:They may have started you on a VPAP S/T because failure of VPAP S/T therapy may have to be proven to the insurance before insurance approves of an ASV.

That may very well be why they chose to put you on an S/T machine instead of an ASV machine.

Another possibility...a strong one, given what you said you were told:

TmjTerry wrote:For some reason I was told that this was the most complex machine for complex sleep apnea.

it may be that the doctor is not really "up" on ASV machines and is simply used to the older way of prescribing a bilevel with timed backup rate for people who have a great many centrals in their sleep study. That's what was used (S/T machines) to try to handle central apneas before ASV machines were designed.

ozij wrote:If the doctor pooh pooh's the ASV issue, look for another doctor.

Indeed. If you get that kind of response from the doctor, ask him why he thinks an ASV would not be a more helpful machine for you...or be at least worth a trial.

ozij wrote:For tonight - just use the machine the way you can. Remove the oximeter each time you remove the mask -- so the doctor and you will know the state of your oxygenation when you feel the need to remove the mask.

Good idea. Just be sure to put the oximeter clip back on your finger each time you muster the will to put the mask back on.

TmjTerri · Post by **TmjTerri** » Tue Sep 21, 2010 10:47 pm

Thank you for responding and for giving me the information so I can bring it up to my doctor. Would you all happen to know if this machine can record data and can I use the ResScan software with it? You guys are the greatest and I appreciate all your wonderful information and advice. I am learning new things every day and I love that. I am absolutely going to do what you all suggested and we will see what happens. The pulse ox machine I have is just a overnight test and I have to return it tomorrow. Hopefully the results will be in so that I can go over it with him. I do know that I am going to buy a pulse oximeter so I can track nightly. Thanks agin folks. You are the greatest!!!

ozij · Post by **ozij** » Tue Sep 21, 2010 10:52 pm

TmjTerri wrote:
ozij wrote:The optimal machine is the type called ASV, and functions differently
Thank you for your advice. For some reason I was told that this was the most complex machine for complex sleep apnea.

It's a complex machine. Probably the most complex (as far as settings options go) than any other -- except for the ASV. The fact it's complex doesn't mean it's good for complex sleep apnea. If that's what they really said, they must be... fill in the blanks.

Can you tell me if the ASV machine can record data so I can keep track and be able to see how I am doing? Thanks again, Terri

Resmed makes an ASV machine, and so does Respironics. Both machines track data, with software. I would want a doctor wants to see those reports. Especially if I was diagnosed with complex sleep apnea.

Here's a review of "Positive Airway Pressure Treatment for Obstructive Sleep Apnea" published 3 years ago;
CHEST September 2007 vol. 132 no. 3 1057-1072
Rahul K. Kakkar, MD, FCCP and Richard B. Berry, MD, FCCP

Adaptive servoventilation (ASV)28 is the most recent variant of PAP. ASV was developed to treat Cheyne-Stokes central apnea in patients with congestive heart failure. However, ASV and bilevel PAP devices with a backup rate are also approved for use with patients with complex sleep apnea (central apnea that persists or appears during a PAP titration). In ASV, a level of EPAP is chosen to keep the upper airway open and the IPAP-EPAP difference adapts between minimum and maximal levels to stabilize ventilation with a goal of providing 90% of the recent average ventilation. With low tidal volume, the IPAP-EPAP increases; with high tidal volume, the IPAP-EPAP difference decreases. A backup rate triggers an IPAP/EPAP cycle if central apnea is present. ASV is not indicated in patients with hypoventilation and may not be as effective in OSA patients requiring a very high level of EPAP.

Note the caveat -- if your needed pressure really is as high as you note, it may be another reason you were give an S/T (that's a bi-level with backup). Many comfort settings can be changed on the VPAP S/T to try to make your breathing more comfortable -- if the doctors office hasn't attempted that yet, they should.

http://chestjournal.chestpubs.org/conte ... 9.abstract
Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
CHEST December 2007 vol. 132 no. 6 1839-18
Joanne Shirine Allam, MD, Eric J. Olson, MD, FCCP, Peter C. Gay, MD, FCCP, and Timothy I. Morgenthaler, MD, FCCP

Abstract
Background: Complex sleep apnea syndrome (CompSAS) is recognized by the concurrence of mixed or obstructive events with central apneas, the latter predominating on exposure to continuous positive airway pressure (CPAP). Treatment of CompSAS or central sleep apnea (CSA) syndrome with adaptive servoventilation (ASV) is now an option, but no large series exist describing the application and effectiveness of ASV.

Methods: Retrospective chart review of the first 100 patients who underwent polysomnography using ASV at Mayo Clinic Sleep Center.

Results: ASV titration was performed for CompSAS (63%), CSA (22%), or CSA/Cheyne Stokes breathing patterns (15%). The median diagnostic sleep apnea hypopnea index (AHI) was 48 events per hour (range, 24 to 62). With CPAP, obstructive apneas decreased, but the appearance of central apneas maintained the AHI at 31 events per hour (range, 17 to 47) [p = 0.02]. With bilevel positive airway pressure (BPAP) in spontaneous mode, AHI trended toward worsening vs baseline, with a median of 75 events per hour (range, 46 to 111) [p = 0.055]. BPAP with a backup rate improved the AHI to 15 events per hour (range, 11 to 31) [p = 0.002]. Use of ASV dramatically improved the AHI to a mean of 5 events per hour (range, 1 to 11) vs baseline and vs CPAP (p < 0.0001). ASV also resulted in an increase in rapid eye movement sleep vs baseline and CPAP (18% vs 12% and 10%, respectively; p < 0.0001). Overall, 64 patients responded to the ASV treatment with a mean AHI < 10 events per hour. Of the 44 successful survey follow-up patients contacted, 32 patients reported some improvement in sleep quality.

Conclusion: The ASV device appears to be an effective treatment of both CompSAS and CSA syndromes that are resistant to CPAP.

And I agree with Den: Even if we assume you do need those super high pressure, an acclimatization period in which the pressure starts out lower than needed and is raised gradually could very helpful. Your body and brain have to learn to breathe in new coditions -- one doesn't run 26 miles when beginnig to train for a marathon either.

timbalionguy · Post by **timbalionguy** » Tue Sep 21, 2010 11:14 pm

Based on what I am reading here, and my own experience, I would try to get on an ASV machine as soon as you can (barring any complications that would contraindicate ASV). Although they were originally designed for people with heart problems, etc. they can do wonders for people who have plain, stubborn CompSAS or other problems that are hard to characterize. I do not have any heart problems, etc., but my sleep apnea therapy varies all over the place. Some nights, its OSA. Others, I seem to have a lot of centrals. The Respionics machine (which i use), that functions baseline as an autoPAP takes care of both problems. It also allows me to use much lower pressures (with the pressure increasing rapidly when I need it), which may be helping more than the ASV part. The ASV machine has also helped me learn to breathe better, and 'tells' me which sleep positions are OK and which are problematic. I am also experiencing an extended period of 'REM rebound', and have had many (mainly good) dreams.

The ResMed ASV machine works a little differently, and tries to keep your 'minute ventilation' constant. Although this machine is a real 'taskmaster' to breathe against at first, most people who have tried it have come to really like it. That said, it is not nearly as 'fine tuneable' as the Respironics machine.

Some have theorized that ASV is the future of general sleep apnea treatment. And I strongly believe they are correct!

tony72 · Post by **tony72** » Tue Sep 21, 2010 11:57 pm

does her machine have the ramp feature?

timbalionguy · Post by **timbalionguy** » Wed Sep 22, 2010 12:06 am

tony72 wrote:does her machine have the ramp feature?

Nearly all modern machines have a ramp feature.

tony72 · Post by **tony72** » Wed Sep 22, 2010 12:33 am

that lion needs a sleep study lol.

Breathe Jimbo · Post by **Breathe Jimbo** » Wed Sep 22, 2010 12:49 am

I would fax the foregoing journal article (the full PDF is available by following the link) to your doctor a few days before you see him again, with something like the following fax cover note:

"Dr ___, I find it almost impossible to use the BIPAP machine at the current settings for an entire night. My research suggests that an adaptive servoventilator (ASV) may be more appropriate for someone, like me, with central apneas. Please see the attached article. Do you think an ASV would be easier for me to tolerate?"

Then call his office and talk to the staff, explaining that you want your doctor to read the article before your next appointment. He SHOULD call your RT to talk about an ASV if he is not familiar with it.

You might also ask whether the very high pressures are causing your central apneas.

Good luck and I hope you feel better soon.

Jim

TmjTerri · Post by **TmjTerri** » Wed Sep 22, 2010 7:16 am

Thank you ALL for responding and your great advice. Tomorrow is my doctors appointment and I am going to take all of your advice. If I get the asv machine I will post it here and let you know. Thanks again you guys are really GREAT!!!, Terri

rested gal · Post by **rested gal** » Fri Sep 24, 2010 1:05 am

Terri, how did the visit to the doctor go?

Bons · Post by **Bons** » Fri Sep 24, 2010 7:34 am

You may be in the boat with me - my insurance company has to be convinced that I truly need the AVS before they will spring for the big bucks that it costs, so first I have to be home titrated for a BiPap (which I used in the lab for awhile until they switched me to the AVS). If my centrals don't drop on that, then they will have no choice but to pay for the AVS.

1st Night Using Vpap St.. Need Advice Now.. Please!!!

1st Night Using Vpap St.. Need Advice Now.. Please!!!

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Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!

Re: 1st Night Using Vpap St.. Need Advice Now.. Please!!!