Returning To Therapy with Startling Results

[OpalRose]

Opiates can be the cause of your Central Apnea, but you really need to discuss with your doctors before stopping any medications.  That should be done slowly and you should be monitored.

At least your doctor wrote the Script for an ASV, so that is always an option should you decide to buy one.   If you have heart issues, you need to have a workup by a cardiologist before using an ASV.

For now, it doesn't hurt to stay the course and try the APAP in CPAP mode as discussed earlier and see if it improves your situation.

[OldMarineOceanside]

Opiates can be the cause of your Central Apnea, but you really need to discuss with your doctors before stopping any medications.  That should be done slowly and you should be monitored.

At least your doctor wrote the Script for an ASV, so that is always an option should you decide to buy one.   If you have heart issues, you need to have a workup by a cardiologist before using an ASV.

For now, it doesn't hurt to stay the course and try the APAP in CPAP mode as discussed earlier and see if it improves your situation.

  Yeah and thank you. Even though we can't afford losses like this, there is just so many reasons I at least may be better served as is VS switching. At least this early and at this juncture. And I am very aware of withdrawals etc as I used to council I others I arrested prior when working for assorted Police Departments and such. I just fat have way too many balls in the air, trying to juggle at once and make a lot of different people happy. 

 I also have an EKG every 6 months which is required along with 30 day monitoring by Pain Management doctors etc, etc. Another "Racket Profession" in many cases but with the insane amount of drug abuse in America now, and especially with Heroin being cheaper than Fentanyl and list just goes on forever, it is a feeble and failed attempt in a lost War On Drugs.

  I am skipping all tonight , I know I KNOW it is 100% wrong but haven't slept more than 2 hours at a time in 4 days and tomorrow is Trish's birthday. With all she has done with me and this week off work taking me to assorted doctors and VA etc for next 2 weeks, I really want to be a bit alert and with it hopefully to spend a day together and just not do anything together. I ordered the mask from (* I won't say where and stay out of trouble*) today as they had the option for both nasal prongs all 3 sizes AND the other type cushion for the most insane cheap price I could not resist. My guess is my leaks will stop in their track since you are SO correct. I swear I never feel or hear it, but leaks all darn night! It arrives Thursday. 
  I will switch to CPAP and have already lowered my doses as of yesterday. I have at least a bit of hope as I see centrals showing I THINK, at times I am awake but still fighting with whatever mask, trying in vain to get calm, relax and stop fidgeting etc. I think I might be actually causing at least some of the central showings on my charts?

  I very much appreciate the guidance. If the weather was not the hottest last 10 days on record,I would do a LOT better. I am responding as proactively as I know to in an effort to fix this. If I do lose the $883.00 for this APAP, I lose it. But I have a VERY strong sense of guilt returning it and also am simply not yet sure I should....It will afford me the opportunity to get masks dialed in etc and make 100% sure I don't go deaf again and get my doctors upset as well. Doing what I am doing is what ALL my current doctors accept as a conservative first effort approach as long as I don't go too long if signs show my body CAN tolerate returning to this modality to treat. It is sometimes a real pain trying to get everyone's approval! But I am really trying.

[Sleeprider]

This is not meant to be a dumb question yes may possibly be? My first partial night was AHI over 27-mostly Central. All the rest 10-13 range, again Centrals. Is it really ALL that alarming and worrisome and is is unrealistic for me to thing wait a minute. Maybe I should KEEP this brand new 4 day old machine and not rush to the ASV although my doctor wrote the prescription TODAY! He was horrified when he saw the reports after all I survive but he's chicken:-)

  I would more than anything else, really like to see what if anything MIGHT be accomplished by trying to cut back on my opiate pain meds and just SEE if I have any chance at all to resolve using this device. I mean I was PURE OSA before those surgeries 4 years ago. Then I quit ALL PAP because to be honest, sort of wanted to "check out" and that is that, just the way it has been. And since my Sinus surgeon ORDERED me to stop and find other options, why not. But here I am and just wonder. Isn't there at least some chance this could ALL be the Fentanyl and Opioid medications? Everything I read on Central Apnia seems to list it as #1 likely cause is why I ask?


  I don't have $883 to throw away but i am also simply terrified at the thought of any machine that will slam whatever amount of air it decides, into me without warning when asleep. I appreciate I NEED it and all, I do. But I imagine being in the middle of just finishing a deep inhale the BAM! IT decides to let me have it. Yeah and I become a human blowfish and rip up all my pretty new many man masks as my face explodes..... I am sincerly worried I may be emotionally unable to endure that treatment given my battle with this treatment over the past 8-10 years or so. I want to be fair to my wife and myself with money as well as health. But I don't have much time left, I AM if very poor health after almost 4 years of massive and horrible surgeries. Throw in my Lyme Disease and I have kinda had enough. But being a natural born survivor is messin up my "I don't give a damned" anymore mantraso I am in the middle at this point. 

  I have a mirical offer to retun my machine only, NO loss except maybe shipping. I have NO idea what on Earth is making seller #1 SO KIND! I am in a state of shock and now in the pressure cooker of my life. I hate to throw this chance away, but my wife and I both feel it might be even less of a loss to keep this, thry THIS a month or even 2 to see if my body rejects it like last time. My hope is, with the new mask ordered today with the Amara style nasal slit instead of the nasal "prongs" many deliver that pressure in a less harsh, more subtle way and put less presure into my sinus. Given I do SO well with any full face health wise except for running into the night screaming naked with flahbacks that is. 

  I can take the loss of this if I end up unable to us Pap of any sort. To lose $2500 plus for used? Not so much. I just keep thinking it has GOT to be the Opioid meds. I t almost always is and my history never had this uyntil I was forced to take them. Think I have even a half decen chance of getting my Centrals to resolve using this AND medication reduction? Now I place my heart at risk not to mention a life that is pure HELL even with the meds, can't imagine life without them. But I want to wean a tiny bit (50 percent say) and see what the numbers tell me? And besides, my wife Trish snores and says maybe SHE can use thismachine soon...

Been a while since I posted, and nothing has change...you need ASV.  That said, if you can wean from opiates and maintain quality of life, considering that you take them for pain, then your results might change.  Personally, I'm hoping to become younger and thinner again, but let's get real.  You have an offer for return on the original investment.  Your type of apnea is more common than you'd like to think, and its response to ASV is predictable.  ASV will work greatfor you, and I would prefer to see you on the Resmed Aircurve 10 ASV or S9 VPAP Adapt than a Philips SV Auto. I would not have told you that in post #2 if it wasn't true.  You got a do-over. Take it. It's expensive, but your quality of life can change more than you know.

[OldMarineOceanside]

  I can take the loss of this if I end up unable to us Pap of any sort. To lose $2500 plus for used? Not so much. I just keep thinking it has GOT to be the Opioid meds. I t almost always is and my history never had this uyntil I was forced to take them. Think I have even a half decen chance of getting my Centrals to resolve using this AND medication reduction? Now I place my heart at risk not to mention a life that is pure HELL even with the meds, can't imagine life without them. But I want to wean a tiny bit (50 percent say) and see what the numbers tell me? And besides, my wife Trish snores and says maybe SHE can use thismachine soon...

Been a while since I posted, and nothing has change...you need ASV.  That said, if you can wean from opiates and maintain quality of life, considering that you take them for pain, then your results might change.  Personally, I'm hoping to become younger and thinner again, but let's get real.  You have an offer for return on the original investment.  Your type of apnea is more common than you'd like to think, and its response to ASV is predictable.  ASV will work greatfor you, and I would prefer to see you on the Resmed Aircurve 10 ASV or S9 VPAP Adapt than a Philips SV Auto. I would not have told you that in post #2 if it wasn't true.  You got a do-over. Take it.  It's expensive, but your quality of life can change more than you know.

   I know Sleeprider and this is my quandary as well. If I only knew with certainty that my sinus will hold up. I have not been able to breath anything through either side of my nose since the night before last. Turned my humidifier up to 5, no help. Since day 1 I put Ayr Saline in each nostril first, sort of tried everything I know like before etc. It is honestly very much up in the air that my body will be able to maintain ability to be faithful to PAP again. That is how I got seriously wrecked last time when ordered to stop and refused. I spent over 4 months 95% plus deaf and not a good time as my equilibrium rendered walking or anything else nearly impossible. 

  Having been tortured in War also is a BIG issue for me but not quitting Pap was likely my way of saying you can't BEAT me to some fear inside? I just don't know. I want to return this machine and STOP, let nature do what it must. Wife won't stop crying and wants me to order machine NOW and I just want to hide and pull those covers up over my head. I need a day with sleep to think....How much do I want her to risk and for MANY reasons, the investment "value" is questionable for very valid reasons.

[OldMarineOceanside]

I just wanted to post an update. The owner of a different website AND one of it's members as well has done an AMAZING thing. The owner of the website is going to "donate" one of his out of service, and very old ASV machines to me for nothing more than the cost of shipping. He just has to go retrieve it out of a storage place:-) It has NO ability to use any software as it is only for use in a clinic setting. BUT, it should be of at least some value he thinks even though he states it has a very large number of hours on it. I am so overwhelmed I could care less about any of that if I can simply have ANY resource to allow me to breath.

The next stunning development is one of it's subscribers who turns out to be someone who helped me on my very first nights of PAP treatment way back in 2010 and 2011 found me there and is donating to me a used ResMed AirCurve 10 ST! Now I understand it is not an actual ASV machine but the group owner has told me it IS very much a machine that is also used for the treatment of central apneas. It will also record data and IS compatible with SleepyHead. So he recommends I use it as well and will help the woman donating it and myself get it set up properly. I am overwhelmed and in an honest state of shock since this news last night. I called the woman who is donating the Resmed (she gave me her number) because I INSISTED on paying shipping and a bit more, just as I will on the oldie machine. He and the other person have been communicating to surprise me and both feel I should have BOTH machines and see how they may help. There is even a "Plan B" in the works for the option of a very old but functioning full ASV machine down the road should it be needed in just a few weeks.

I never solicited for any of this and honestly can't believe anyone can be SO caring, so generous. I did know (only by posting back and forth online) the woman donating the Resmed for many years as a wonderfully helpful & kind person but THIS, THIS is so over the top. Their kindness combined with all of you here who have done so much to guide me has been a very heartwarming experience. My wife is mailing the return of my Airsense 10 back to seller #1 on her lunch break today. Somehow, someway, as much as I have lost in this purchase, I feel as though I actually have actually gained something far more valuable than just money here. ALL I know to say is thank you. To everyone who makes this awful experience we have to face every single night, so very much easier. I will cherish this for how ever much time I have remaining. At least now, it is more of a fair fight.
Mike

[OldMarineOceanside]

Sleeprider And anyone else!).  Is THIS looking any better to you?

Image at:    https://imgur.com/pS3kYIO

And: https://imgur.com/pS3kYIO




It is using a used Resmed AirCurve 10 ST Set on ST using the following settings:

Was 
Ipap-8 
Epap-4 
Respiration-10 BPM 
Ti max-2.5s 
Ti Min-1.2s 
Rise Time-300ms 
Trigger-High 
Cycle-Low 

For tonight I was considering changing to below.
NOW-
Ipap-10 
Epap-5
Respiration-10 BPM
Ti max-2.5s 
Ti Min-1.2s 
Rise Time-300ms 
Trigger-High 
Cycle-Low 




Would the above numbers in the "NOW" column be agreeable? The bottom line is for me, unless I can find some way to make any pressure over that 10 IPAP not such a L O N G and drawn out breath, I know I will just trigger a panic attack when feeling like I am being "Airboarded". 

Another issue with my Hypopneas is I see some in the first segment when I switched mask liners after just a very few minutes after going to bed since it is so hot here and yet while I was wide awake, it shows quite a few Hypopneas... I think this is when I test it before allowing myself to try to actually sleep by holding my breath at the very end of expiration to see if the machine will do anything to help. And sure enough it did, just a little push to get me started. I haven't a clue about this stuff since never used this SleepyHead software before. Years ago on an old Phillips Machine like Jason uses I used to use their Encore Pro software so I am beginning all over and have honestly forgotten all of it. All I remember is I went from 17-23 AHI, all OSA to 0-2.0 to 3.0 a night and never had any of these issues. But never had to take heavy Opioid Pain medication or had Lyme Disease before either. Bless all of you to take the time and EXPENSE to help me with this. I can never repay you for all you have already done & accomplished.

  I am flying by the seat of my pants here. Googling all I can, winging it after trying to study an old Remed Titration guide from their S9 days. I'm trying the best I can here. My feelings are this might be good enough? I would do most anything to avoid borrowing another $1800 to $2500 for ASV. Seems to me that this is nothing short of a remarkable improvment. I have not slept a solid 8 hours in over 15-20 YEARS and with Lyme Disease, never more that 2 or 3 hours a night. Foe me, this is a flat out Miracle ...

And factoring in the first 30 minutes or so when I was wide awake trying the foam face cusion on my also new AirFit F20 Full Face CPAP Mask with Headgear, I just wanted to see if the soft memory foam of the AirTOUCH was any ni cer but that foam made me sweat too much in this heat so I shut down and went back to the standard AirFit and in that 30 minutes or so was playing with holding my breat a bit after a full exhale to see if this machine would do anything. Sure enough, it would give a little "push" of air to tell me to take a breath. Problem is, it shows these as Hypopneas even though awake and testing how it behaves so I wonder if all the times I roll over and "test" this is possibly what shows so many of these events? Either way, I am more optimistic than evenr in my life that maybe just MAYBE this is good enough?

[OldMarineOceanside]

PS my primary care physician did write a new prescription and faxed it to the seller of my original machine seller who then issued me an RMA to return it. I was stunned that they would help me that much and even though the 15% penalty they charge, and the whopping $50.00 cost to return ship it, I feel like I am in as good a place possible. Likely a much better place overall.

[Sleeprider]

Is the new prescription for ASV? The St machine is still leaving you with a lot of hypopnea, and we will presume that is central in your case. There is a significant difference between the ST and ASV, and you should familiarize yourself with the intended use and applicability of each of those machines. You have been blessed with a lot of generosity and help. If you have the option to get a modern ASV with auto pressure, it is a far preferable solution to the legacy machines.

Clarify for me what machine you plan to use. On the ST, the need will be for more pressure support, not necessarily higher EPAP, but your newer settings increase EPAP by 1 and increase PS from 4 to 5 cm. I think that is a move in the right direction. You may need pressure support as high as 7 or 8 cm to induce a breath during a central event or hypopnea. The difference between ST and ASV is the intelligence of the ASV to apply that pressure support only when needed, and only as much as needed. The Aircurve 10 ASV also uses Pacewave instead of a dumb timer to maintain a natural breathing rhythm. It will be a bit more difficult to self-titrate the ST, but I think it will improve things for you, just go slow as you are. If you can get the autoASV, then it will pretty much take care of everything. Let me know if you get one, and I'll give you a good set of settings to input.

[OldMarineOceanside]

Is the new prescription for ASV?  The St machine is still leaving you with a lot of hypopnea, and we will presume that is central in your case.  There is a significant difference between the ST and ASV, and you should familiarize yourself with the intended use and applicability of each of those machines.  You have been blessed with a lot of generosity and help.  If you have the option to get a modern ASV with auto pressure, it is a far preferable solution to the legacy machines.  

Clarify for me what machine you plan to use.  On the ST, the need will be for more pressure support, not necessarily higher EPAP, but your newer settings increase EPAP by 1 and increase PS from 4 to 5 cm.  I think that is a move in the right direction.  You may need pressure support as high as 7 or 8 cm to induce a breath during a central event or hypopnea.  The difference between ST and ASV is the intelligence of the ASV to apply that pressure support only when needed, and only as much as needed.  The Aircurve 10 ASV also uses Pacewave instead of a dumb timer to maintain a natural breathing rhythm.  It will be a bit more difficult to self-titrate the ST, but I think it will improve things for you, just go slow as you are.  If you can get the autoASV, then it will pretty much take care of everything.  Let me know if you get one, and I'll give you a good set of settings to input.

Thank you so much-Thenew prescription IS for an ASV. He gave NO numbers at all for titration, just told me to do whatever I wanted since I seemed to know far more than himself. He told me he was scared to death for me and to buy SOMETHING and do it now. So next is, I am using a Used ST with a bit over 3500 hours on it. Smelled like it was from a heavy smoker so spent 2 days using Ozuim sprayed on a cotton ball next to the intake to get rid of "some of it". Enough to use it last night and not throw up anyway. 

OK so I WILL be using ONLY this used ST till further notice, unsure if I will ever see that old antique ASV with no ability to know results ot not now? So on this ST you say to "but your newer settings increase EPAP by 1 and increase PS from 4 to 5 cm.  I think that is a move in the right direction"

The results I posted was with:
Ipap-8 
Epap-4 
Respiration-10 BPM 
Ti max-2.5s 
Ti Min-1.2s 
Rise Time-300ms 
Trigger-High 
Cycle-Low 
--------------------------------------------------
OK I was all excited but woke up and changed it to:
NOW-

Ipap-10 

Epap-5

Respiration-10 BPM

Ti max-2.5s 

Ti Min-1.2s 

Rise Time-300ms 

Trigger-High 
Cycle-Low 
------------------------------------------------------

Are you suggesting I shult bump the EPAP to 6
and WHAT is "PS"? Is that IPAP? 

I am so sorry to waste your time with my ignotance. But I SO badly want, and NEED to try this machine for a few months and will do anything & everything to not borrow against our home to buy an ASV. I see SO much improvement, or at least I THOUGHT this was a significant improvement, I guess maybe I was all excited for nothing? I know one single thing. Make that two things. I NEVER felt so alert in over 20-30 years and that is not at all exaggerated. Next, I also never slept over 5 hours in the past 40 years and always just thought it was from so much PTSD from War and the crazy hours working for Police Dept's...whichever,this ST was like I went to Heaven. No matter how bad my chart is. But I swear I really thought it had gotten good so I have an awful lot to learn. 
THANK you so much,
Mike

[Sleeprider]

Mike, it is never a waste of time. I voluntarily give what I can because I enjoy it.

The ST machine is a bit of an enigma to me because it's best use is for people that don't get enough air because they have restrictive lung issues (COPD,), neuromuscular weakness that limits ventilation and obesity related hypoventilation. It's use in complex apnea, including opiate related central apnea is a complete puzzle to me because that is not what the machine is intended to mitigate. It's use in those applications, and complex apnea is a kludge, and I really disrespect the doctors that try to apply it that way. It's more common than you would think. What the ST does is provide fixed bilevel therapy with a backup rate that invokes higher IPAP pressure when a person fails to take a breath after a period of time in the settings. With 10 breaths/minute (BPM), that means IPAP is invoked after 6 seconds of a patient not taking a spontaneous breath.

Now, let's see how that helps you...Up to now, we have coached you to minimize pressure changes, and EPR to avoid central apnea. Now the ST requires that you use pressure support on each breath. That pressure support encourages more central apnea because it washes out CO2 and other reasons. So this therapy is inherently more likely to cause CA due to pressure support. It might be able to cause a breath if the pressure support is high enough to overcome the central apnea. Once the machine detects an apnea, it will transition to IPAP. If the apnea is central, pressure support needs to be strong enough to cause a breath. If the hypoventilation is an obstructive or neurological symptom the machine is "designed" to mitigate, the added pressure should ASSIST the inhalation of air. ST was never intended to deal with the patient that is not making a respiratory effort, but if the pressure support is in the range of 6-8 cm, then a breath is likely if the airway is open. What this means, is the ST makes most central patients need more machine initiated breaths because spontaneous breathing is suppressed by the pressure support on every breath.

With ASV a minimum pressure support of zero is possible, or another low value that is comfortable. I find most ASV users do pretty good on PS +2 over EPAP. This encourages spontaneous breathing. The intelligence of ASV is that it detects your normal respiratory rhythm, and when you are not breathing your normal volume, or having a central apnea, it applies just enough pressure support for that breath to cause a normal breath. That pressure support can be as much as 15 cm over EPAP. The bottom line is ASV intelligently applies pressure to keep you breathing naturally and comortably on a breath by breath basis. We set the EPAP high enough to prevent obstructive apnea, and the AutoASV can detect obstruction and increase that pressure if needed. We then set a minimum pressure support for comfort like 2.0-3.0 cm, and a maximum pressure support which may be 8.0 to 15 cm to cause a breath when central apnea occurs. The result is usually invisible and results in near zero AHI for central, complex and opiate related CA patients.

They are very different machines, intended for different purposes. i would be doing you a tremendous disservice if I encouraged you to pursue anything other than the ASV. I'll be glad to work with you to optimize CPAP or ST if that is the only choice, but it's not. Get the ASV.