Relative newbie, have a few questions :)

Ok, Miss Nice Girl. It is now time to be a P.I.T.A. with the CPAP group of your current DME. They have demonstrated they are not interested in your welfare.

As engineers, we need data. Earl

Well, after work I hauled butt to the new DME and was able to get in 20 to close, waited for a RT to be available, and got some really fantastic news.

So, because I have an insurance change, I'm getting DANG lucky here. I'll be able to return the brick to my old DME, and get an elite from the new one when the changeover happens. Or if my doc can write it for me, the autoset. (They said my doc needs to do a DAW for the APAP over CPAP. Fine. Either way, they'll be getting me the kind with full data, not just hours run. I bet he will if I ask, he seems to be pretty chill.) In addition, they said I can get supplies on the 21st with my current, rollover and once again when my new insurance takes effect. Sooo that means a FF or hybrid *and* the pillows and I can then figure out in 3-6 what is going to be my main for the future.

RT also gave me as freebies a filter and a new small pillows for my swift as that one is actually fitting and working fairly well, and he told me he'll be working Saturdays when I am eligible for new masks. He was pretty stunned at what's happened to me so far with the other place.

They also believe there that without data you can't really have effective therapy, so they just go for the ones we can pull data out of, especially as the difference in price they said was pretty small. That was SO reassuring.

They also said that the ear thing is uncommon, but they have a hearing guy who does hearing aids and will do a ear screening for free, and direct me to some ENTs if need be. So that was cool of them.

Hm, as far as current setup and what I've been doing....
I have my cpap about a foot lower than the mattress, and I already pillowstack enough that I'm at a nice 45 degree angle, so no rainout unless the whole thing gets upended. I keep waking up and the bed's shifted farther away from the bookcase though....apparently I've got the very active sleep again. Blankets were all kicked off the bed too this morning. I think I'm going to have to ask the new guys if they can get me a super long hose or something if i'm causing the whole bed to move. o.O

I did have an idea as I was driving home from work, though....I know I swallow to try to get my ears unstuck and to finish popping all the way....could it be that's how all that air swallowing is happening is the ear pressure is painful I'm swallowing without realizing it?

Jan, thank you for popping in! I actually do the tongue at the roof of the mouth basically all day, and I have little tooth-shaped divots in my tongue, I'm guessing I do it in my sleep too? I know I usually wake up and it's like I've got peanutbutter sticking it in place.

@Earl: Hi Yeah, once I get the new machine the nice is going away. Politeness won't but they've lost me as a customer and I'm letting family and friends if they ask know too...which is a shame. Their orthotic and prosthetic work is truly wonderful. Not sure what's gone so wrong in cpap land. The guy also made a comment on the first day that they don't like engineers much as they tinker with the machine. If I wasn't so inexperienced at life things like that....I would've walked but I was so scared that the machine would be taken away entirely I didn't. That as an upsetting comment. But now I know better, and I'm doing something about it. Which feels great.

Anyone have opinions on that F&P mask that goes under the chin a bit along with the Mirage Liberty? The F&P they had on a dummy and it looks like it may work with my jaw being a bit farther back than the Air does...I go mostly side sleep but sort of go back and forth between sides and my back as the night goes. Never stomach sleep though. I guess I'm trying to brainstorm things before I go in so we can direct the fitting time better.

Yay! Things are looking up! Keep us posted.

Definitely.

So oh, I got a funny thing from my dentist visit...I had brought my masks to the bite guard pickup as he wanted to see what I use (he wants me to bring them to my next cleaning and xray too, make sure everything is working together cohesively. Awesome dentist!), and I mentioned I'd found one really awesome thing about it that I never would've thought up were it not for CPAP...

Y'know, you can totally hang out in a blanket cocoon/fort and totally cover all of you head to toe in blankets with the cpap on, and still get nice fresh air. He thought that was actually a pretty good plus. So do I.

I see that no one has responded to your question about the Liberty mask. I am a side sleeper and have used the Liberty. The air vent holes are on either side of the mask, which means that, when lying on either side, half of the vent holes are in your pillow and creating noise. The mask ended up being too shallow for my face. It caused teeth problems when I had to tightenit up enough to stop leaks at the cheeks. I switched to the Hybrid which vents directly in the center of the mask. It is quieter and works well for this side sleeper.

Hi M'ohms Thank you for the input! I've started to notice a few people saying that around the forums, so I'll be definitely asking about the hybrid first, I think.

To anyone: So, tomorrow I'm going to current DME to make sure they don't auto-refill my not-fitting masks and stuff Tuesday, when I'm eligible for a new set of stuff. Wait, I could go to the new DME and they could at least *fit* me tomorrow and actually fill Tuesday when I'm eligible, right?

And then this weekend will be crazy....I'm moving out to my own place!

My new apartment has a sink in the bedroom. I won't have to clean my cpap stuff in the bathroom sink anymore. Very excited for that.

....is a cardboard box lid enough to put over the carpet to put my cpap on for the first few nights? I'll be sleeping on either a borrowed-from-parents air mattress (it's one of those taller aero beds) or on my futon with a memory foam topper until I get what I want for a new bed sorted out, still haven't found quite the right match. I'm hoping that this will help the machine-tipping fail, that happened again early this morning, my blankets got tangled with the hose

I have a page I typed and printed with masks I am interested in trying as priorities, masks I've tried at home, and what I remember of the masks from the sleep studies and what I liked and didn't like about them. Overkill or do you think they'll be happy for the information?

Got the next step in the changeover done.

Wasn't able to get the masks today or try any, but we did do a bit of "what are you looking for" and as soon as I come back in starting tomorrow (when insurance says I can) I have about 5 FFM to look at, all different brands. (Quattro, Ultra Mirage, Amara (gel and silicone), Flexifit 431/432, Forma are on the list right now...) We decided to wait on pillows again until I change insurances...and also for them to get the AirFit P10 in stock. I asked about it, the guy hadn't heard of it yet but said there was a resmed rep coming next week, so I bet I know what the topic of it is.

I also from the new DME got a copy of my sleep study. AND the guy helping me totally sat and answered my questions. I have a great feeling about these guys!

They also said once I switch insurances I should be able to just get the blower, and to definitely talk to my doctor about the autoset given the pain with the ear pressure. They also said they start out with you wide open at 4-20cm with the autoset, but will help you narrow it down as you find the magic range. Sounds like it's really going to be a great partnership!

Well, quick check-in as I'm packing my CPAP up to bring it to my new apartment... (First place on my own, wooooooooooo!)

Yesterday I went to the new DME after work. The guy there was incredibly helpful. We ended up trying.....something like 5 or 6 masks before we found the right one, but we found me a FFM for once allergy season hits or if I get the flu since I have yet to find somewhere with an egg-free flu vaccine in stock, etc.

Tried the Liberty (loooved the concept, but was leaky for me), the Quattro, I nixed the Quattro FX before starting because it didn't work at all at the sleep study, we talked about the Flexifit 431/432 & Forma but they didn't have any in stock in a Small, they only keep M/L/XL on hand...but no luck at that point. The funny thing was I kept getting leaks in exactly the same spots on my face with every single ResMed FF Mask. I think there's another one we tried but I don't remember what. Brain's a little fuzzy on that point.

Then we started talking about the gel masks. He wanted to try the Amara but they were out of the size I needed....so he got out a PR ComfortGel. NO LEAKS.

And my ears hurt less than any other mask I'd tried while testing. Awesome RT thinks it's because the machine wasn't trying to compensate so much for the leaks. They still are bothering me a fair bit but it's a step in the right direction!

So that's what I took home.

First 3 hours I slept well, then I woke up coughing like crazy and it was verging towards panic hyperventilating so I took the mask off. Fell asleep a bit with no mask, but put it back on when I woke up again for the last hour of sleep and got the compliance at least. Had a good wakeup not a bad one like earlier too, so that's nice.

Going to try again tonight, keep working towards a full night with the FFM. And this time keep the Swift FX closer at hand so if I need to I can switch mid-night.

I asked about the 10 foot hose but he told me he wanted to check with the Resmed guy before giving it to me, he wants to be sure it doesn't affect the...tidal volume I think he said? Not sure what that is yet. I really appreciate that he's asking before he dispensed the hose!

So once my insurance changes...Swift FX or AirFit P10....I'm one of two that have asked about the airfit so far at the DME. The RT was like "oh I bet that's what the inservice coming up with Resmed is about then!" so I'm amused.

Thank you all for the push to make the switch. This is such a night-and-day difference!

Congrats on your new apartment AND on getting the new DME. Things are looking up, eh?

Yes! Just have to sort out the panic mid-sleep, but I think that might be just an adjustment thing with the anxiety. (Anxiety monster likes to rear its head once in a while. I will vanquish it with time!) I might just use my pillows tonight as it'll be new apartment + air mattress + no tv for tonight...that's enough change for a single night.

Sooo excited. Should uh, finish packing and get out there, it's a 45 minute drive yet. I'll be back for a bit more posting once I arrive.

Hi Guys!

I got a few things happening on the sleep front. One of which is I got one of those serta icomfort beds and the freaking Cadillac of adjustable bed frames. (Gardner white had free delivery and 5 years no interest to pay. ^_^ ) I still have the air mattress as my "couch" for now, too much snow to get my furniture moved...going to try again this weekend assuming we don't get another storm. It's looking iffy though. I'll be going for cheap/free table and chairs and a desk, but a bed's way more important furniture-wise. If I live with tv trays for a while longer, so be it.

The awesome thing about my new bed? I don't even care about all the bells and whistles (idk why Bluetooth speakers, for example?) , but the important thing is all the positioning awesomeness. I've been waking up with no joint pain for the first time multiple days in a row that I can remember since before puberty when my leg joints started doing really weird stuff. It's also taking a bit of the edge off the air swallowing, though it's not fully solved. Feels less like a basketball that I've swallowed. More a kid's soccer ball, not a grownup's sized one. Still swallowing air, but less is in the right direction. Actually my tv tray fits perfectly next to the bed, I haven't pulled my cpap off it once, I have what went from feeling like nowhere near enough tubing to plenty.

Well, my new DME is freaking awesome!!! I gave it a good week, but I kept waking up with panic attacks with that gel mask and it was also bruising the bridge of my nose right where my glasses needed to sit during the day...so we went to officially putting me on the Swift FX for Her. And they gave me a chinstrap to try to see if it helps the air swallowing. And got my tubing done (the last of the supplies, since I haven't pulled the machine since the new bed we figured I didn't need the extra length).

I saw my sleepdoc. With the escape we could only see times used and that I was back to 30/30 days > 4 hours (I broke the streak one day over winter break, only slept for 3.75 hours the morning I got my new bite guard. oops.) But what we could see was a bit of information that was useful - every single night I tried that comfort gel I went from sleeping with the machine un-interrupted to having gaps mid-sleep. A few of the very long ones I actually dozed off no mask. But after a couple times of that I actually started sleeping with my Swift right by my head so I could make a very quick switch if I woke up in a panic. It just wasn't the mask for me. Which is sad, as it fit by far better than any other FFM.

So yeah, we had a good talk. I let him know the ear thing isn't really any better even with dropping the pressure to 13, and that I've been swallowing a ton of air. He was going to write me for the the Elite since my insurance is switching, and I asked about the AutoSet. He wrote me for an auto-cpap with "elite" and a range of 7 (where my ramp has been starting) to 15cm. He also said he'd write a letter to my old DME on my behalf....he was not impressed that they couldn't get me filters correctly. He was very happy that I was researching into this and looking for support and trying like crazy to get it all going though!

I gave the script to my new DME with a "don't fill this until my insurance switches" and they said they'd hold onto it. And they understood what my doc and I were after, (they're really awesome, and they're stumped by my ear troubles and want to see the AHI and leak data for themselves, too). And that they'd ask the manager folks if I could special order the For Her version. If not, oh well, but if I can get it, I'd prefer the pretty pink, especially if the price is the same...if not, well, when the rent-to-own is done I'll get one of those neat skins.

So yeah. Things are definitely looking up! No panic attacks last night since I was with the swift all night too.

Hi SleepyStar,

I'm an RT and a sleep tech with years of experience. It's now time for you to take the bull by the reigns and I'll tell you exactly how to do it.

First, pack it all up, go into the store and hand over the machine. Especially if it is within the first three months of purchasing it. Your insurance will convert to purchase within three months or may already have (hope not). If you are on Medicare, it may take ten months. Also, if you keep it, you will have to pay out of pocket for the auto. In that case, don't buy from a DME. Get it online like with CPAP *** com at a fraction of the price (if you have to buy it yourself). ($600 versus $1800) Secondly, tell them you want an auto with data gathering abilities or nothing at all. Both machines are reimbursed at the same price. They make more money selling you the cheaper machine.

You can buy your machine anywhere that accepts your insurance. The companies will prefer you to buy something from them so pipe up and tell them you need to buy a mask or white filters and you need a new company to provide supplies for you in the future. Dollar signs will appear in their eyes and you are in.

Physicians do work with some companies more than others and sometimes you just don't have a good DME around. There is a book called, "My Little CPAP Book" which explains many answers to your questions and would guide you in how to circumnavigate in that messy world called DME. Product codes, gastric insufflation (air in your stomach), tube sizes (6 feet versus 10 feet on the Respironics), mask choices, finding info on your auto and understanding what it means, getting sleep study results and understanding what they mean (it is part of your medical record and you have complete access to it legally) and much more is described in detail.

Being an engineer, and I have worked with many engineers, you are quite the thinker and problem solver. Now, you just need the tools to make things right. Currently, you do not have what you need. Get the book. It is only $2.99 and I assure you, you will find it to be very helpful. Kindle and iTunes has it. The book also goes over panic attacks. I greatly dislike the comfort gel for most people. The Eson or Wisp (for an around the nose mask) have been most popular and successful with most people. The book also goes over the different products, their codes and how insurance pricing works. For example, all nasal masks (pink, around the nose, nasal pillows, big and gaudy, cheap and horrible) are reimbursed at the same rate with the same agreed upon nasal mask price. Having an auto to use variable pressure instead of one set pressure could instantly resolve your problems with higher pressures causing ear popping and gastric insufflation. The pressure goes up when you need it and down when you don't.

Careful. As soon as the rent to own is done, you own the machine. Make sure you have an auto.

Heads up -- sleep711 wrote that little book she's encouraging you to buy. Very unclassy way of marketing.

Sleepy711, I'd really rather you didn't advertise books like that. : / Especially when it looks like you read about half of what my thread's journey so far has been! I already have switched DMEs for supplies, and the only reason I haven't switched for the machine is because my parent's insurance runs out at the end of this month and so I'm returning the rental then anyways with the easy termination point. It's a 13 month rent to own. No point in renting with the new DME just to have the script change a month later, y'know? That's a royal pain for everyone. I have the script for the AutoSet ready to go for March 1st with my new insurance.

Kindly, work on your listening skills. If you're only half listening to me as you're peddling your book, I bet you're only half listening to your patients, too. And if a patient has trust then amazing things can happen. If not, then what could be a pretty positive thing in a patient's life can become an anxiety-filled mess and well, half of CPAPers give up, and I suspect for a good number of those that give up it's due to not having a proper support system. Be the spark, not a salesman!

Guys, today I had to turn in my escape to the old DME.

And there's been paperwork snafu extravaganza for the last few weeks...on the work benefits/insurance company end really. My new DME's been kick-butt about it and is awesome but they're waiting on my new health insurance to call them back for the OK! It's just that my work's insurance plan is in a totally different state than Michigan, even though they're both BCBS, it's taking lots of extra red tape apparently.

I have no machine tonight. Or well, I have a humidifier, water, tubing, mask, and filters. Everything but the blower half, really.

Other than putting adjustable bed to "as close to sitting upright as I can stand" and using my bite guard, is there anything I can do to not have a completely crappy day tomorrow? I've not even done well with a nap no-cpap those rare times I've dozed a bit since getting it, I'm honestly scared to go to bed right now...yes the escape it wasn't really quite right with all that air swallowing and the earpain but I was at least able to think straight on the whole, and didn't have the absolutely splitting headaches...