Desperate for Advice

[doughsthoughts]

Hey everyone,
Its been a few months since I've been here, but im desperate, So let me catch ya up to speed.

I started with a AVAPS machine < severe OSA and central sleep apnea, index of like 140. I start with pressures of epap min 7 / Ipap min 12/ ipap max 20 / rr 13 / Ti 1.6 ... Using an Opus 360. . I start to improve, im sleeping im dreaming.(holy shit i dreamed for the first time in 10 years) that was really nice.... I thought i was broken.. anyways after 6 weeks. My real machine shows up. I was originally ordered an AutoSV because of my centrals, but because of pricing and ordering it. It finally showed up, resperonics Bipap Auto SV.. It works great most of the nights, but pressure blows the pillows out.. So i try a mirage quattro, IM claustrophobic, So i can maybe use the mask for 30 mins max. Plus im a stomach sleeper because of my bad back. I switch back to pillows and try the swift FX. wow I love the pillows and i tighten it down so its sort of working. working enough where the machine is not freaking out.. well slowly but surely i got worst and worst.. I got so bad i fell asleep driving to work, but i thought i was doing better. I started to fall back asleep at work, All the bad stuff you can think of. Not knowing where I am, nodding off while talking to people the whole deal.

I start to freak out, im crying to my girl , I dont know what else i can try to do at this point. I contact the Sleep DR. they ask all the questions, eventually they say, ok well the last machine did good lets switch back to that.. ok.. I think im getting an AVAPS. took like another 2 / 3 weeks. well I get an ADAPT SV (old model) they covered their asses and reported thats what I got the first time instead of the AVAPS. I had reports and the data card showing i got an AVAPS, but what ever I let it slide.

Im on pain medication for Chronic back pain, Morphine sulfate extended realease 30mg, Morphine Sulfate Instant release 30mg, neurotin , and zanaflex..

I read around apparently people are getting good therapy with this devce adapt SV, but i think most people have the newer model.. (enhanced) ,but anyways i think lets try it out. First of all the mask, dosnt work at alll... Not even close it dosnt reconize it, it does a test and it wont pass any of the circuits. So damn it.. i wear it in liue of the alarms.. Its been like a week. and its miserable the mask wont stay the swift FX just leaks anytime it tries to treat an apnea, it blows it out of my nose. than im awake for real so i just take it off and try to go back to sleep..

IM miserable, i feel like im dying again. I dont know what to do.. I ordered a liberty mask, it showed up today, just testing it and fitting it on my face , i can tell ya it wont like it. Its leaking its making noises, it whistles when I breath out. I tried different pillows in it..

so Should I ask for another Machine, another Mask? what the hell are my options, can i ask for an Enchanced version of what I have? I read S9's can help with CEntrals or at least detect them.. wait for a VPAP s9.I just dont know what I can do to get this under control. I felt what it feels like to be normal, to dream, to wake up rested and alert, to have a memory.. I want that back. My insurance has been wonderful, I have not paid a cent for 2 sleep studies, 4 machines, 4 maskss. Not a penny, I dont want to abuse the system where I do have to pay for it, because I oCouldnt pay for it if that was the case.

My mother has severe OSA, on a bipap her machine is 10 years old and she believes its not working as well, she does not have insurance and just going back for the sleep study is 800$. I look online and found a vpap auto 25. for 300$ with mask hoses data card, everything you can think of. I brought it home for one night and hooked it up and used it.. what a miracle data can be.. I slept 5 hours. AI of 5 AHI of 33, but I felt good. It raised my min IPAP to 13 I guess It thought I needed too.. but I can tell it couldnt fight the centrals. at all, but my Nose pillows work in it wonderfully..

So please the advice, I need it , I really need it right now. So please humor me! thanks so much I really enjoy reading the forums. I wish I contributed more but im just soo busy!

[GTOJim]

I usually just lurk, love reading what people post.

My wife was on pain killers due to an accident, her pain medication caused centrals. We discovered her sleep apnea while she was in the hospital, her oxygen levels dropped while sleeping. She was still on pain meds during her sleep study. She had a lot of centrals during the study. Once she was off the pain medication the centrals stopped. Her sleep apnea didn't go away but her centrals did.

A month ago she had a knee replacement. The surgeon put her on different pain medication and she hasn't had any centrals. She is still on pain meds but currently at a lower dosage. I think the change in pain medication was the main factor in my wife's case. Because as she lowered the dosage her centrals improved, but didn't stop until she was completely off the pain medication.

I don't know if another pain medication is an option for you. It might be something to discuss with your doctor if you haven't already.

I know from personal experience getting the right mask can be quite a problem. A one time I tried just about every full face mask on the market.

Hang in there, I'm sure things will get better.

[doughsthoughts]

THanks for the info, it says in my sleept study the centrals could be to the back pain, my only issue is, take the meds away and I don't even get a chance to sleep. the meds are barely enough to let me lay down and attempt sleeping with the pain..

Do you by chance know what meds she was switched too? or what she was on when she had centrals?

thanks.,

[unadog]

Don't change the meds. Not worth the disruption. You will need them to sleep!

I am on fentanyl patch and oxycodone and doing great. I would worry more about the neurontin interfering with sleep, but that is another question.

You should be able to do fine with the machine you have! It is had on masks though.

Can you try a full face mask? The Mirage Quattro FF is kind of a standard. You are going to get the best therapy on FF.

I listen to relaxation tapes after I lie down. Even when it took me + hour to fall asleep, those helped me to relax. The biggest problem with the ASV is the high end pressure. I had a lot of leaks with the pressure higher. Within 3 nights I bought the top pressure down to 18 and got everything under control. Started doing great, AHI under 1.0.

Can you get your data off of the Resmed? You really need that. Maybe he DME will help?

You have to both select the mask type - Mirage FF, Activa, ec on the Adapt, then run the learn circuit. Therapy will suck with the wrong mask type! You are close, should be fine if you can get that thing going!

[GTOJim]

THanks for the info, it says in my sleept study the centrals could be to the back pain, my only issue is, take the meds away and I don't even get a chance to sleep. the meds are barely enough to let me lay down and attempt sleeping with the pain..

Do you by chance know what meds she was switched too? or what she was on when she had centrals?

thanks.,

After her accident she was taking Percocet (Oxycodone-APAP 5-325MG) one or two tablets every 4 to 6 hours. When first home she need 2 tablets at a time. As she healed, she slowly cut back.

Knee replacement 4 weeks ago she is taking Norco (Hydrocodone-APAP 10-325) one or two tables for pain every 4 hours. At first she need to take two at a time.

I'm not a doctor and don't know much about pain medication. I do know is my wife isn't having centrals with her current medication, she was having a lot of centrals when taking Percocet. Her AHI was in the 90's during her sleep study when she was taking Percocet.

It might be a shot in the dark talking with your doctor. Hopefully he might be able to come up something for pain control that might lesson the centrals, assuming your current medication is causing them or making them worse. Sounds like your on very strong medication, I hope there are options for you.

Hopefully others on this forum more knowledgeable than I will have some suggestions.


+

[ozij]

From what you wrote, it looks like you did best with the AVAPS, and the way it was set.

Please look at your data from the AVAPS, and tell us exactly how it was set.

The main question is: is there another machine you can set up to respond exactly the same way. The answer may be NO, because the AVAPS is a machine that responds to your breathing volume and makes sure you get a certain volume of breath -- and if the assured volume is what is helping you, the the SV machines won't do the job.

O.

[Julie]

Maybe it's the nature of morphine itself vs other analgesics. It's really so counterproductive when it comes to OSA and I can't imagine trying to feel better (more alert) if I was using it when sleeping. Have you discussed different meds with your MD? Does he/she understand about your OSA?

[doughsthoughts]

Maybe it's the nature of morphine itself vs other analgesics. It's really so counterproductive when it comes to OSA and I can't imagine trying to feel better (more alert) if I was using it when sleeping. Have you discussed different meds with your MD? Does he/she understand about your OSA?

Yes she is aware of the OSA and centrals, I gave her a copy of the report.. The problem we've encountered was, less medication I dont even attempt to sleep from pain. ON medication, at least I can fall asleep but then i am aroused by the centrals.. viscious cycle, we are getting a new bed in a few months. I am hoping that will help, currently I can only sleep on my stomach from back pain, I have tested other beds and do get better sleep in different positions because of how supportive the bed. which helps with my pain when laying down..


I want to say the AVAPS was setup as AVAPS / epap 7 / min ipap 12 / max ipap 20/ ti 1.6 / RR 13 / I want to say total volume 1200 - 1600?

[doughsthoughts]

anyone else got some advice? anyone gone through alot of machines and masks and feel at their wits end? i cant be the only one.

[ozij]

From what you wrote, it looks like you did best with the AVAPS, and the way it was set.

Please look at your data from the AVAPS, and tell us exactly how it was set.

The main question is: is there another machine you can set up to respond exactly the same way. The answer may be NO, because the AVAPS is a machine that responds to your breathing volume and makes sure you get a certain volume of breath -- and if the assured volume is what is helping you, the the SV machines won't do the job.

O.