Hate to make my first post a vent but...

[JoeP]

you folks are the ones who truly understand what i am experiencing.

The sleep center called last Friday to tell me they were prescribing the autoPAP. Since then I have made several calls to both the sleep center and DME. FINALLY was told today that my insurance was approved and that i can come in MONDAY to pick it up. The girl I talked to had no idea what type of machine I was getting, only that i had to bring $116 for the copay (50% of insurance contract cost). Not real sure what type of APAP would have a $332 contract cost. I am almost to the point of strangling someone, i just want to sleep. For the past few nights I have stood at the edge of the bed and told my wife i didnt even want to crawl in because it is a waste of effort, i will feel just as tired the next morning as I did then.

ok vent off, now for more of an intro and background.

For the past 6-9 months i have been having issues with daytime tiredness and it has been worsening. Had a very stressful fall and lost my dad after a short but tough battle with cancer. During that time i gained about 20 pounds and was also having lots of body aches and pains. I am a sound sleeper, the house could fall down around me and i would sleep through it, but when I wake up i am just as tired if not moreso than when I went to bed. I am sleepy all day, have a tough time driving more than 30 minutes and could nap whenever/wherever.

I took some online "quizzes" that pointed to depression and sleep apnea issues so I went to my GP in December. I had bloodwork done and both thyroid and testosterone were ok. We discussed it all and decided that maybe if we could fix the sleep that the rest of the issues might be resolved along with it. He also started me on setraline as a short term fix.

I had my first sleep study in January. Now to look at me, I fit the prototypical description of a sleep apnea sufferer - male, 40+, overweight, 18.5" neck and as the sleep tech said a long, palate and narrow throat, to top it off my wife complains of my snoring and says she has observed me not breathing. I also suffer all the symptoms. Here is the problem, I normally sleep on my side or stomach, and the first sleep study showed 1 CSA and 0 OSA. HUH?

The study showed that it took me almost 2 hrs to get to REM and for the entire 8 hours i was asleep 90% + of the time but only in deep sleep for 30 minutes. Also I fell asleep in 4 minutes - in a strange room, in a strange bed, with all those wires hooked up to me. The sleep doc said that was borderline narcolepsy so wanted to schedule me for a multiple sleep latency test. This also required me to go off the setraline for 3 weeks, which kinda sucked because it took most of December for it to work and was just feeling pretty good.

Onto sleep study 2 - slept 95% of the night this time, but had a few OSAs and an AHI of 6.5. For the multiple daytime naps my average time to fall asleep was <4 minutes. This places me right square in narcolepsy range again except that I did not go into REM during the naps so thankfully I am not narcoleptic just really tired. Sleep doc and I looked at each other after reviewing the results. Again i appear to be the classic sleep apnea guy but the sleep study barely shows it. but she said the 6.5 was above 5 and therefore considered sleep apnea so now it is time for titration.

Sleep study 3 -titration - here we go again, wired up, nasal pillows in, lights off - flip and flop for 4 hours!! The techs had a hard time getting a good seal on the nasal pillows and when they did i felt like my breathing was really labored and i really had to force the air out. The one tech was concerned that they wouldnt have enough results to determine the effectiveness of using a CPAP and that I might have to come in again. Well that was the call last week that I was being prescribed an AutoPAP. I am guessing that this is so i can pretty much self titrate at home.

Sorry for the long winded rambling. My family and friends are sympathetic but i really needed to spill my guts to some people that truly understand.

[IndyDave]

First of all I'll say "oof!". Sorry to hear what you have and are going through.

I totally understand your frustration. My experience has been similar - my symptoms of fatigue, ache, and all that got to the point of being a major issue about a year ago. I'm self employeed, and only have catastrophic medical insurance... so chasing after it all was out of pocket, fortunately my GP is the best Doc I've ever had, and we work together as a team, rather than the normal role. Went through the blood work, but in my case testosterone was low, and thyroid was low enough that I went on a low dose of synthroid. No real improvement. Lots of tweaking of doses and more blood tests.

Again like you, we "knew" I had sleep apnea, but the cost of a sleep study was totally out of my ability to pay for at this time. I did pick up a cheap recording oximeter, and based on those results, I shopped the net for the most capable, yet cheapest bilevel machine I could find - my Doc's idea, and he wrote the script. Sort of like you - we don't know if this is the problem, but its just the next step in investigation, and it took me a couple months to save up the money for the machine, mask and supplies. Right now I'm still in the process of titrating myself to the right pressures.

So if your out of pocket is low and you can afford it, I say go for it, just to see, or eliminate a variable. As far as what you are getting from the DME, call them back, and say you won't be in to pick it up until they tell you what machine you are getting. What can they do? They want to sell you something! Do you watch "The Office"? Be like Andy last night, and say "no" until you get what you want. If you have to argue with them or insurance - well you aren't completely sure you need this anyway, based on your sleep studies, so you can afford to wait them out.

Really hope you can get some satisfaction, and that you get some positive results. I'm hoping this makes a significan't difference - that it was a combo of apnea and the hormone levels combined. Its been so frustrating. Hang in there!

[chunkyfrog]

It is so good you have come on here before it is TOO LATE!
Just be intractable. Stubborn. (save 'rude' for extreme situations)
You're sick, but you're not stupid.
Refuse to sign anything or hand over any money until they trot out the machine you want.
If you decide to go elsewhere for your machine, (most of us can) do NOT sign anything that states you refuse treatment.

[Pugsy]

Typically the initial cost (when using insurance that normally uses "rent to own" formula) is that you get the machine and humidifier.
Humidifier normally is not "rent to own" and is billed out full and separately and the machine blower is billed out in monthly rental payment depending on your insurance contract.

So I would anticipate that further monthly payments would be less and reflect the rental term on the blower only.
Check with your DME and/or insurance to confirm.

Welcome to the forum. Once we know which machine brand you are getting we can point you to appropriate software. Normally APAP machines offer full data..the exception being the ResMed S9 Escape Auto. It does offer a little bit of data beyond hours of use but only an overall AHI and average pressure..no leak report..no graphs...no AHI breakdown.

[Slinky]

If it is a Resmed you want the AutoSet, NOT the Escape Auto.

[Gerryk]

You are not going to self titrate with the auto set. The auto set will be set within a range and if you need it, it will kick up into a higher range and if need be kink up until it reaches the maximum that your machine is set for.

From what you have said, I have a feeling that they got some data, but not enough. Hence the insurance company agreed to pay more for an auto machine rather another sleep study.

Do not get discouraged and ask questions.

[DavidCarolina]

Statistics are helpful but inadequate. Supposedly my numbers are "great" but i know i still have apneas. I still snore on my stomach
with the mask on !!!!!!!!!!

Dont get overly caught up with numbers. Be sure you know more about your body than somebody "interpreting" it.


My opinion of physicians is very very bad. Particularly ones treating diseases they've never experienced.

[JoeP]

Thanks all, I will be pushing for a good machine.

Will let you know how it goes.

Of course I will probably follow that up with a ton of questions.

[NightMonkey]

This is the cause,

long, palate and narrow throat

and this is the effect,

overweight, 18.5" neck ,

AHI of 6.5

What was your respiratory disturbance index (RDI)?

Don't take crap from anyone about that machine. Refuse delivery until you get the right one. Make sure you can accurately identify the model numbers. Walk out and leave it behind if not certain.

Totally avoid backsleeping until you start CPAP. It is the worse possible position for sleeping. Sides or stomach are better for many people.

[JoeP]

Don't remember the RDI.

Always go to sleep on side or stomach, almost never sleep on back, but according to the Mrs I still snore, which I didn't think was possible.

[osako]

Sounds like you are actively working on treating the OSA and that is good. We have a number of things in common. I'm similar age and build, and 2 years ago, like you, I had a sleep study that showed an AHI of 6.5. The Dr. said it was borderline normal and we agreed to look for other reasons for my sleepiness thyroid, lowT. None of these panned out and eventually I gave up. Fast forward to last summer. I spent a few days with some family on vacation and they were aghast at the noises that I made during sleep . They could hear them clear across the house. When I got back I setup another sleep study. This time the test had to be stopped two hours in (split-study) and showed an AHI of 59. You're doing the right thing by seeking treatment now. Your OSA can get much worse if left untreated. I've been on CPAP for about 8 months now and I feel better. Not awesome, but definitely better than before and I regret not starting CPAP when my AHI was 6.5.

[chunkyfrog]

Remember, that a sleep lab and the equipment may itself contribute to a failure to reach REM sleep, where many apneas occur.
One can only guess as to the margin of error.
Full data machines, used every night, are the ONLY choice for effective treatment.

[JoeP]

Well I ended up with the PR System One REMStar with A-flex with a humidifier.

Trying out the Resmed Swift LT nasal pillows and and Mirage nasal mask that the sleep center gave me to start with. Also got a chin strap from the DME.

I will be downloading Sleepyhead tonight.

I want to go home and go to sleep now just to try it all out

As for cost, one time payment, no rent to own but i do have to send in the data collector in 90 days to prove compliance, i think the requirement is 70% for 4+ hrs per night.

Thanks for the response to this thread, and thanks in advance for the questions I will probably have in the upcoming days, weeks and months.