Rough Night in the Sleep Lab

[Lizzzabeth]

Had my titration study last night. It was one of those "what can go wrong, will go wrong" kind of nights.

Started with a slight sinus headache, not the kind that would normally drive me to sudafed, just tylenol and flonase. After reviewing mask choices together, my sleep tech and I decided to try an F&P nasal mask. The nasal pillows made me panic! I'm a side sleeper, so I was reluctant to try the FFM.

We started at 5 cm and I could not breathe out. I tried every relaxation technique, prayer, everything--and I was tired. She let me struggle way too long before we first tried a different mask (another F&P because the first seemed too noisy) and then she finally turned on C-flex. Phewww...now I fall asleep.

Over the course of the night, she had to wake me multiple times for the following: to reattach a sensor on my leg, to add a chin strap, I flipped the wrong way in my sleep and tangled myself in the wires, we tried a full face mask just so I could see if it would work for me. I got to experience rainout. I only remembering dreaming once, but it was a vivid dream that she had removed half the sensors and got called away, leaving me in limbo (must have been some wishful thinking!)

Anyway, I was not pleased to hear that there may not be enough data, and the doctor might decide to order a new test. I'm hopeful the doctor will just decide to set me up with a fully data capable APAP and see how it goes (apparently the probable second alternative according to sleep tech). I expect the study will show I truly slept less than three hours out of the nine hours I was in bed. But even with that, I felt more alert--just still sleepy and tired and still with the sinus headache.

I came home, called in sick at work, and finally went to sleep where there were no wires or tubes, at least for now.

Now the waiting begins for the doctor's recommendation.

[mayondair]

Sounds like a bad night. I had a bad titration also, my new doc agreed that an auto was a reasonable option. If you have a big deductible, or co pay, have a conversation with your doc, a fully data capable auto would be the best machine regardless. I'm in SE Mich also, do you have a DME yet? I had one that was particularly slimy, send a PM if you want their name Best of luck to you and welcome ! kathy

[DaveL]

Had my study after 2 years requesting one from my GP. It was in an old, unused Nurse's residence on the hospital grounds. Got to walk through a tunnel to get there.

While getting wired, I watched bugs crawling across the floor. Finally went to bed. Slept a little. (Later confirmed, OSA, and restless leg syndrome). Morning they stripped the wires off me and kicked me out. It was about 6:00 in the morning. I had glue through my hair, and on my forehead where they pulled the wires off. No hat--hadn't thought of bringing one. Stood on the corner making sure it was safe to cross. A nurse coming to work took a look at me and crossed the street! Suspect that I looked like an escapee from the mental ward! Certainly felt like one!

That was 13 years ago. First sleep study.

DaveL
Toronto

[LSAT]

And sooo many people feel that government controlled healthcare like Canada has is what America needs.

[Mike6977]

And sooo many people feel that government controlled healthcare like Canada has is what America needs.

To my knowledge there are two private (not university run) sleep labs in Manhattan.

Can't ask for a more dense, upscale market to serve than the Big Apple, can you?

I've been to both labs for sleep studies.

One lab was a horror story and the other lab—at best—indifferent.

I hear Canada is beautiful in the fall . . .

[jefff]

Wow, that sounds awful. I guess I am lucky, as mine was done in a brand new building, in a nice room, nice bed. The room even had my own private bathroom with a shower and everything. I took a shower in the morning and the guy even told me how to get the glue off. It was a really nice experience, thank goodness.

[ThirdOutOfFive]

I was less than impressed with my titration night, too. I have fibromyalgia (17 years & counting) and can have a tough time sleeping. The technician who talked to me in the morning seemed insulted that I had not had the best sleep ever that night. I explained that the mask was a poor fit -- she said it was not. I explained that I was awakened when they changed the pressure -- she said that was impossible. I explained that I have fibro -- she didn't believe that, either. Sheesh!

However, I do believe that I have OSA and am trying to make the PAPpy work for me. I hope you can get it to work for you, too. Lean on the folks here, they are great!

[ems]

Sorry it was such a bad nite, Liz. Mine wasn't that much better. If I ever have to have it done again, I'll do it at home. More and more people seem to be doing it that way, and it makes so much more sense. You are in your own comfortable bed, etc.,etc. I wish I had known it could have been done at home. Would have opted for that in a minute!

[jess]

Not all states have the home studies yet. I asked for one, but they are not available in Alabama (at least not in Mobile). We are so far behind here. My friend in California had a home study 3 years ago. It costs the insurance companies something like $4000.00 for the two inpatient studies here ---- can't understand why they continue to pay that when the home studies should be good enough for a lot of us.

[robysue]

Lizzzabeth,

Your titration study sounds a lot like my first BiPAP titration: Tuesday night before Thanksgiving. We were planning to drive all night Wednesday from Buffalo to NJ with two exchange students. I was already a bit woozy from some vertigo testing. And I woke up in the middle of the night to a full blown migraine aura. And the migraine pain started about 30 minutes later. I slept just under two hours (out of a seven hour "time in bed" period). Needless to say, I was wiped when I got home that morning. And then the comedy of errors continued. Just as I was getting up from a two or three hour nap, we got word that one of the exchange students had decided to move out of our house rather than do the trip to NJ. We'd been having trouble with this guy previously, but on Monday night he'd told his liason, us, and the local AFS team that he'd go to NJ rather than be kicked out of our house. At least it didn't snow on the drive.

Fortunately, there was just enough data to let the doc's PA recommend me switching to biPAP since at least I was more comfortable lying in bed wide awake for several hours than I'd been in my own bed on CPAP/APAP for the previous two months. And a decent, but not perfect starting guess for pressure settings.

Now the waiting begins for the doctor's recommendation.

While you're waiting, there's plenty to do.

What to do next? Start by asking your sleep doctor's office for the full sleep study reports. Make sure you get the full report---both the dictated interpretation AND the full summary data with the graphs. And start learning what that report means. Ask your questions here.

Next: It is imperative that you call your insurance company NOW and find out about your coverage. You want to find out exactly how they cover durable medical equipment. The copays for equipment like CPAPs may be very different from the copays you are used to for the occasional prescription drugs. You will also want to ask for a list of "in-network" durable medical equipment providers (DMEs) that the insurance company works with. The reason why is that YOU want to be the one contacting the DMEs and interviewing them to make them earn your business rather than simply accepting a machine from a DME that you've never heard of and then---after the fact---finding out that the machine they "gave" you is not the one you really want or need.

So that means you also need to start researching CPAP machines. While they all provide the pressurized air you need to keep your throat open, they are NOT all the same in terms of important features that improve your comfort and improve your odds of fully adjusting to therapy and thus benefiting from CPAP for a long time to come.

My advice about what kind of a machine to get? Get yourself a CPAP that records full efficacy data to start with. And be as demanding as you need to be in order to find a mask that works for you. Better yet, get yourself an APAP that records full efficacy data. APAPs can be set to run in straight CPAP mode, but a CPAP can't be set to Auto to auto-adjust the pressure based on what's going on with your breathing each night.

Once you know what KIND of machine you want, then start making phone calls to the DMEs that are in-network for your insurance company. Interview each DME and make them earn your business: Start the conversation by saying something like: I've been recently diagnosed with OSA and I am looking for a DME. If I were to use you for my DME, would you provide me with a <your choice of CPAP machines>? If the answer is no, politely hang up and keep on making phone calls. When you locate a DME that will give you your choice of machine, then start asking them about their mask return policy: How many times can I swap a mask that's not working out for me while I'm getting used to the machine? What kind of restrictions do you have on returning a mask that is not working? You want to find a DME that has a reasonably generous mask return policy since some new CPAPers literally go through 5--10 masks (or more) before finding one that is right for their nose.

[Lizzzabeth]

Thanks for the stories and for the advice. This forum is great--always someone who can relate to your current issues and concerns.

I've done a lot of research on the machines and masks. I didn't think I would like the FFM, but I think that's probably what I'll start with. It just made it easier for me to not have to think about keeping my mouth closed right now. And there are only 2 or 3 machines I would accept, thanks to the advice from all the veterans on this forum.

I've already interviewed and rejected my current DME (who I use for diabetic supplies) because the so-called cpap expert in their office underwhelmed me with her knowledge and had to run to her supervisor for a couple answers. And they are fine for mail order but a little far for any type of face to face interaction on a regular basis.

The sleep lab told me about a small local DME, so I'm going to try calling them tomorrow. The office staff at the sleep lab had a lot of positive things to say about the DME manager and the RT. They have space right at the hospital campus, and they work really closely with the lab and doctors.

My insurance treats all providers the same--they'll only reimburse so much. The difference comes in whether a DME wants to accept that amount. "In network" DME's have to accept it, so they have to work on you to accept a cheaper machine. They have to do the billing for you. "Out of network" need not accept that amount, they can ask you to pay the difference and they can ask to do your claim forms (you can shop around if they do!)

I'm trying not to make this an emotional decision, but I know I've got to find a DME who makes me feel positive about the whole initial experience.

[robysue]

I'm trying not to make this an emotional decision, but I know I've got to find a DME who makes me feel positive about the whole initial experience.

Nothing emotional about this feeling at all: A DME that makes you feel positive about the whole experience is one that values you both as a patient and a customer. It's completely rational (and logical) to insist on finding one that wants its customers to do well and encourages them to come back and ask questions.

Best of luck!

[DaveL]

And sooo many people feel that government controlled healthcare like Canada has is what America needs.

We don't have health care anymore; we have health management. Keep the costs down...rants over. :-]

[poppi2]

In the middle of my titration night, the trash dumpster for the office next door needed emptying. This required a truck backing up with a loud backup horn blaring out. He must have backed up for 150 feet.

[Lizzzabeth]

Doc says not enough data...so back to the lab again (sigh)