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[Diagnosis] New and Desperate - Printable Version

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New and Desperate - oventek - 08-27-2020

I would like to start off by saying this is an amazing place and I have learned a lot just from reading the various posts.  A heartfelt thank you to all that take the time to post and help others.

My doctor and wife have been pushing me to get a sleep study done for several years.  I started out in denial and finally came along.  First insurance road block, $900 copay after a referral from my primary care doctor.  I felt my problem wasn't worth paying that much.  A year later, I finally stopped the denial and started my research, this forum was a great help.  I went another route and found Lofta online and figured I would just buy the machine myself.  I ordered the home sleep test and it is attached below.  They wouldn't just sell me a machine.  On the advice of a coworker, I made an appt with a neurologist, who also happens to be the "medical director" of the sleep center that wanted the copay of $900.  Going through him was cheaper, I hope, as I was told he will "bill me" through him instead of the sleep center.  (Cant wait to see that bill....)  Over a month later, the insurance company finally approved the sleep study after many phone calls.  I went for the sleep study last Friday.  Now they are telling me that it might be "another week or so" before I get the results, and, to go the insurance route for a machine could take another month or so of back and forth.  They said I just need to be patient........

In my research here and other places, I have come to the belief that in the end, I am still better off just purchasing the machine myself rather then dealing with high deductibles, co insurance etc.  

The sleep study referred me back to a doctor because of centrals and Cheyne Stokes respiration.  The neurologist did not feel it was accurate.  When I did the home study, I did it in my RV while at a campground.  I did cough very often due to campfire smoke and I am a smoker (yes, trying to quit, that is another issues)  That may be a part of the problem with the results.  The home sleep study is attached here.

I have purchased, and used for the first time last night a Pulse ox monitor (CMS50F).  The report is attached below.

Is my logic about just purchasing my own machine sound?  If so, which machine should I get?  I believe that I can just order one from Vendor #2 on your list and have read they are very accommodating and good.  I figure even if I purchase the machine, and wait out the insurance company at least I have a spare I can use in my RV.  My research has me concluding Resmed is the way to go.  Do I need an ASV machine or just a Vauto?  

Some additional information, My sleep has always been terrible, now that I look back at it.  I am always tired and can fall asleep anyplace, but never have fallen asleep unintentionally.  I always attributed it to my Navy days on a submarine.  Sleep when you can......  As I have aged, I have developed high blood pressure, weight gain I cant lose, etc.  

I have downloaded and started to look through Oscar.  I was able to also import the results from my Pulse ox to it as an experiment.  Realize it does not do much without a machine data first so I am not attaching that.  

Thank you in advance for any insight or advice you may be able to offer me.


RE: New and Desperate - Gideon - 08-27-2020

Welcome to the forum.

First the important stuff, What boat(s) were you on. (SSBN610 b, SSBN633 g, MM1(SS) ELT)

the issue is the Centrals. if they are real you need a ResMed ASV, if not the ResMed AirSense 10 AutoSet or the 'for her' variant)

regarding the centrals "The neurologist did not feel it was accurate. "  Do you have any heart conditions?  Your test showed significant CSR and to have significant CSR is unusual.  Centrals are associated with CSR. I'd ask for a detailed 15-minute view of your CSR to evaluate it but you do not have this yet.  CSR is a very rymithatic breathing with central apneas between the nodes.  Causes could be 

Heart condition (CHF is frequently associated with CSR)
Drug usage, either medicinal or recreational (not judging)
Stroke or seizure
Brain injury

While we are at it any breathing issues other than the apnea and snoring?

A neurologist is the right specialization to investigate the centrals.

An Adaptive Servo Ventilator (ASV) (ResMed AirCurve 10 ASV) is designed to mitigate and prevent central apneas. It is the only member of the CPAP family with this capability.  Any other CPAP/BiLevel can only avoid Centrals.  My Advice is to see what your doctor says.


RE: New and Desperate - wstahlm80 - 08-27-2020

I first started CPAP back in 2007. Like you, I was VERY resistant. I eventually got used to it, but as time progressed, I stopped seeing my doctor about it. Fast-forward several years and additional health complications crept into my life. My doctor determined that these issues may be due to improper PAP therapy. I got scheduled with a new sleep doc, did a new titration study and determined that my pressures were WAY too low and that I needed to be on a bi-level machine for proper therapy instead.

Also, like you, I was not happy about the cost. But, I personally feel that my unwillingness to invest in proper oversight cost me far more regarding my overall health (some effects may be irreversible). So, I would highly recommend that you consider consulting a doctor that specializes in this type of treatment instead of trying to go it alone and relying only on information you find online.


RE: New and Desperate - oventek - 08-27-2020

(08-27-2020, 09:22 AM)bonjour Wrote: First the important stuff, What boat(s) were you on. (SSBN610 b, SSBN633 g, MM1(SS) ELT)  SSBN642 b, YN2(SS)  Nice to meet another brother!


regarding the centrals "The neurologist did not feel it was accurate. "  Do you have any heart conditions?  High blood pressure.  Had ECG and showed "minor leaky valve"  

Drug usage, either medicinal or recreational (not judging)  No.  Drink alot of coffee and smoke.  Prescriptions for Losartin and Carvedilol for HBP.  Buproprin for smoking and Rosuvastatin for cholesterol.

Stroke or seizure No
Brain injury No

While we are at it any breathing issues other than the apnea and snoring?  Nothing diagnosed.  Dr was concerned with air volume test, was very low, smoking for 40 years.  Very close to quitting now.  Down to like 5 a day.



RE: New and Desperate - Gideon - 08-27-2020

That's the Kamehaha isn't it? The piano from the edison is now in the Steinway museum.

For an ASV you will need a sonar scan to evaluate your LVEF (<45% I believe) because a study showed that old men with heart conditions died when they didn't use ASV. In other words flawed test conditions. I don't have your doctors knowledge so listen to him but. . .

Ask him his plan to manage the central apneas. A contingency of whatever he says should include ASV, so ask him if that fails? questions. So what path would lead you to ASV? He could have other ways to manage the centrals.

Since you mentioned the VAuto, it IS a better machine than the AutoSet, but is more expensive. It has a couple of tricks that may or may not help with central BUT it is NOT designed in anyway to manage central and will, just like the autoset, sit and do nothing when a central apnea pops. ASV is significantly more expensive than either of these.


RE: New and Desperate - oventek - 08-27-2020

It is the Kamehameha.  The good old days!!  Made 1 patrol then went into yards in Portsmouth for overhaul.  I ended up getting out because I couldn't stand the cold and being pierside all the time.  Wish I would have stayed in.

If I were to get an ASV, I see a used one on Supplier #2, Would it hurt if the centrals are not an issue?  I plan on continuing with the neurologist, just looking to get a jump start.  I do not know if my acceptance and acknowledgement is making me notice it more, but it seems it is getting worse.  

After my titration sleep study, it almost felt like the best sleep I have had in a long time, I was physically tired but not mentally if that makes any sense.

I am aware of the ultimate consequence potential if I ignore the problem.  I am looking to get a jump start on the diagnosis and insurance fight game.  Mostly looking to move past the insurance issue on the machine.  My work health care insurance really sucks.  One of the problems with working for a small company these days.  I have no problem paying the copays etc for doctors and testing, its the insurance company waiting fight that kills me, possibly literally!


RE: New and Desperate - Gideon - 08-27-2020

Post your titration study,  it will help with the decision.

The ASV is not the solution if the Central Apneas are not real.


RE: New and Desperate - oventek - 08-27-2020

I will post it as soon as I get it.  I just got off the phone with the neurologists office and they said they will call and try and have it expedited.


RE: New and Desperate - Gideon - 08-27-2020

FYI, if your neurologist didn't say he questioned it I would suggest the ASV ($1350 at Supplier #2 I believe for "gently used".)


RE: New and Desperate - oventek - 08-27-2020

I saw the one you are talking about.  It is actually in my cart.  Lol.  

Can the ASV function be turned off and it used as a normal machine if the ASV is not needed?  Considering I have almost $3000 before I meet my deductible and only have 4 months left to do it, It is still cheaper I think than getting through the insurance co.