Returning To Therapy with Startling Results

[OpalRose]

Don't make any hasty decisions. We can still work with you, until you decide what to do.
We may be able to tweak your settings a bit to try to get an improvement. We are not doctors and there's no guarantee.

Turn the EPR to off. When you tried straight Cpap, what pressure was the machine set at?
This is another option.

I think if you are not self paying, then you need to consider going through Medicare or the VA. If money is an issue, then this is the route to take. Either way, start a conversation with your doctor. Explain what you have already tried.

To answer your question, a bipap won't treat central apnea, but our crazy insurance system will want you to try it.

[Walla Walla]

How long you live is a question no one here can answer. But as far as a quality of life issue it can make a big difference. Hang in there!

[OldMarineOceanside]

Don't make any hasty decisions.  We can still work with you, until you decide what to do.
We may be able to tweak your settings a bit to try to get an improvement.  We are not doctors and there's no guarantee.  

Turn the EPR to off.  When you tried straight Cpap, what pressure was the machine set at?
This is another option.

I think if you are not self paying, then you need to consider going through Medicare or the VA.  If money is an issue, then this is the route to take.  Either way, start a conversation with your doctor.  Explain what you have already tried.

OK and tomorrow is my appointment for flu shot and to get a supporting letter for my PTSD & Agent Orange medical nightmares etc. He gave me the newer prescription for THIS APAP just 10 days ago:-) 

OK, my original CPAP was in 2011 and was set to 12.9 period. Blew my eardrums out and I spoke well enough to talk my way up to a new APAP that my share was $580 or so plus masks etc which is why we self paid this time to get what we WANTED. I set this to APAP and 5 up to 13 max since I was concerned about pressure. With full face I had NO problems with my sinus. Tried switching to nasal mask and BAM! I sleep great, no panic attacks to speak of but oh my God do my ears both ache so I worry it may be a bad plan.  and speaking to that, I am, and we are ordering a nasal mask with the identical nasal air delivery piece as my full face, it is called the "DreamWear Nasal CPAP Mask with Headgear - Fit Pack (All Cushions Included with Medium Frame)".  It also allows me to exchange this exact nasal opening that is a slit style opening and swap it to gel pillow piece if I choose. My guess, and it is only that, a GUESS is, if the Amara full face causes me NO issues, NONE beside leaking, why not try this new one we just ordered last night with the same nasal piece but has NO frame to freak me out etc? Just trying everything...

  Anyway, machine is now set by ME (i ain't afraid of no stinkin clinicians menu) 5 up to 13 on APAP and reset to zero on the relief darn it. Now my data for tonight will stink because I will likely be up all night with worry about seeing my doctor tomorrow. I WILL tell him what I need and let him advise me and listen to what he suggests. I suppose he will write me ANY prescription since we also just spent thousands of dollars wasted thinking I had ALS, MS and who knows what to 1 year later discover I have late stage Chronic Lyme Disease which has put me in a wheelchair nearly fully paralyzed. Unsure if it is that or the failed 6 spine fusions with full Mastectomy etc, etc, but I am toast. Just wish I could have a nice little nap before my FINAL nap! 

  I will adjust my machine to anything you suggest, I know you are NOT a doctor and that is a GOOD thing because I would not listen if you were. Sorry but THEY created that in me.

[OldMarineOceanside]

Don't make any hasty decisions.  We can still work with you, until you decide what to do.
We may be able to tweak your settings a bit to try to get an improvement.  We are not doctors and there's no guarantee.  

Turn the EPR to off.  When you tried straight Cpap, what pressure was the machine set at?
This is another option.

I think if you are not self paying, then you need to consider going through Medicare or the VA.  If money is an issue, then this is the route to take.  Either way, start a conversation with your doctor.  Explain what you have already tried.

To answer your question, a bipap won't treat central apnea, but our crazy insurance system will want you to try it.

  I screwed up (oh shock) and did not give you the info THIS NEW machine came to me with. Here is what it came with before I molested it "PRESSURE SETTING: 4 cm - 20 cm" APAP. Never ran it that way however.
Mike

[OpalRose]

Let us know how the DreamWare mask works for you.  

The one reason I asked if you used a straight pressure, was because I was thinking that might be a better way to go, as long as the pressure isn't too high which would cause more Clear Airway.  

Let us know how your are doing today.

[CapeMayDan]

Some info on filters for your machine. With your sinus condition you might consider up grading the filter, assuming the machine shipped with a standard filter. Every time I run my machine with the humidifier off , the cold irritates my sinuses and  i wind up with a lot of bloody q tips. 
Believe it or not, mouth breathing can also aggravate allergies and large mask leaks can dry out your mouth and sinuses.
Anytime your nasal or chest discharge is not clear or has color, suspect some thing is causing it like allergies, pets.
Wash your mask every day.
Mold can live in the humidifier and hose, not good ,so stay on top.
JMO NO pets in the bedroom.

Here is the info in video     Air filters.

Hang in there and hope things get better.

Dan

[OldMarineOceanside]

Let us know how the DreamWare mask works for you.  

The one reason I asked if you used a straight pressure, was because I was thinking that might be a better way to go, as long as the pressure isn't too high which would cause more Clear Airway.  

Let us know how your are doing today.

  Thank you, we head to the doctor in 30 minutes then home and back to BED! Less than 2 hours sleep even though in bed or 8.3 hours...full face-fail, driving me crazy with claustrophobia even though it is such an amazing mask for full face. Will NOT give up on it yet since I can't imagine any other full mask being as easy to deal with?  Swift FX Pillows for rest of my night. Never heard a single leak but shows constant leaks so I am simply bewildered. 4 nights with no sleep and pretty wrecked.
  
  Can you explain to me what the clear airway represents? I assumed (wrongly I guess?) that it was a GOOD thing to keep an airway open? So very very confused. 

  Since my machine seems to spend almost all it's time around 10, do you tink maybe I should try converting it to cpap and set to 10 steady?

[OpalRose]

Central Sleep Apnea - (Clear Airway) A period of at least 10 seconds without airflow, during which no respiratory effort is evident.

The Airway is open, but the brain forgets to send a signal to breath.

Did you set the EPR to off?

I have no problem if you try straight Cpap. Try a pressure of 9cm, no EPR.
You need to stick with a setting for a few days to see if it helps.

[OldMarineOceanside]

Central Sleep Apnea - (Clear Airway) A period of at least 10 seconds without airflow, during which no respiratory effort is evident.

The Airway is open, but the brain forgets to send a signal to breath.

Did you set the EPR to off?  

I have no problem if you try straight Cpap.  Try a pressure of 9cm, no EPR.
You need to stick with a setting for a few days to see if it helps.

Thank you,

   JUST walking in the door. Yes I DID turn  the EPR off all of last night & will never even glance it again. EVER:-) I will switch it over to CPAP now then and set it to 9 cm. I am likely using nothing at all tonight so I can get some actual sleep time. Kill me or not, I need a "moment" of peace. I know that is wrong but....I am flat exhausted and literally hallucinating from fatigue and not from my drugs either darn it. My wife Trish and I BOTH appreciate your help and everyone's help & suggestion SO much. My doctors face was SO horrified when I informed him of my Central Apnea and handed him my print out. He knows what I just lived through and was not expected to survive the first surgery and ended up 4 more due to changing & unforeseen events. Kinda just like buying this  machine to only have it tell me I need MORE machine. Oh the joy. Anyway, I have got to find some way to stop the leaks and since the full face that you say shows less or no leaks is the exact same nose piece as the one I am going to try next but without the rest of the mask that freaks me out, I believe it MAY just be my last real hope for for being able to do what I need to do?  

  Of to take a nap if I can just eough to quit seeing quadruple.

[OldMarineOceanside]

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...