Smargie’s Therapy Thread...in Need of ASV Advice

[Smargie]

I think the doc misspoke when she said to bring my CPAP. I read the instructions for the study and it did say to bring the mask and hose. I’m glad I know better what to expect this time...last time I planned to go to breakfast afterward... I had no idea I’d have all that goop in my hair and look like a crazy person. I’ll bring stuff to shower this time.

It didn’t feel like I slept much last time. I thought I was awake for about 2 and a half hours in the middle of it, but according to the report I was in stage 2. I do think I’ll sleep better this time, but I wonder if the ASV part will wake me with those bursts of air.

I don’t understand how ASV works. How does exhale pressure take care of OAs? I also don’t know what pressure support being the difference between inhale and exhale means. It seems like the bursts of air would be uncomfortable. This is a more sophisticated and expensive machine isn’t it? I know it’s supposed to be more sensitive. I hope it really works.

I’ll post an update after the study, though I won’t have the results yet. Assuming I actually am prescribed an ASV I’ll need some guidance in picking one out. Thanks to this website I now know that the DME usually gives you the cheapest one possible, but you actually have some say in it.

[Jay Aitchsee]

Good luck, tomorrow.
Don't worry too much about the particulars of ASV, now. If you are prescribe one, it will take care of both OA and CA, no problem.
Tomorrow, just go, try to be relaxed and get a good night's sleep. Most likely you won't be able to tell much difference from your first study and probably won't notice any bursts of air.
If it turns out you are to get an ASV, plenty of people here can help you choose one and learn to understand and use it. They are a little more sophisticated than APAP, but not terribly so. Adjusted properly, one should be comfortable to use and provide restful sleep.
Let us know how it goes.

[beautifuldreamer]

Best wishes Smargie on your Sleep Study.

Once my sleep doctor said I could bring my own PAP to use during the sleep study, but when I arrived, they said that I had to use their PAP, not mine, and also I couldn't even use my own mask, but they brought in a new mask same as the one I had been using . . .

For me, I started with the Respironics ASV, and for the 3 years I used that, I had such a hard time sleeping - it was too noisy for me, and I felt like I was always in a light sleep state. Now that I have switched to the ResMed AirCurve 10 ASV auto, I am so much happier with it, my AHI is lower, and I sleep better overall - I wear the soft cervical neck brace to deal with the mouth breathing (now I am using the Dr. Dakota Anti Snoring, Stop Snoring, Snoring Solution, Sleep Pillow). I feel like the ResMed breathes with me, whereas I kept fighting the breathing with the Respironics.

There are others who posted that they did not like the switch from Respironics to ResMed, so it all depends on the person. Each person is unique

[Smargie]

Ok, Jay...I’ll try to take it one step at a time. When I went to the DME last time they had the Philips Respironics auto CPAP all ready for me and had chosen the mask themselves. All I know was that my doc ordered a nasal mask. That worked out pretty well (except that it didn’t actually work ), but I think I lucked out that time. I just want to make sure I have as much of a hand as possible in choosing my next machine.

Beautifuldreamer, thanks for your feedback regarding the Phillips vs the Resmed. 3 years is a very long time with a machine that made you feel so uncomfortable! Do you also have complex sleep apnea? Was that your initial diagnosis or did you start out on CPAP? Is your cervical next brace the same thing as a cervical collar and is it really that soft? How helpful is the pillow? Do you use it for snoring or is it to make sleeping with a mask on more comfortable?

Can Phillips masks for CPAP be used with a Resmed AVS? And I assume you can use a nasal mask with an ASV since you use a collar to prevent mouth breathing? I’ve been using a chin strap. I wonder if I’ll be able to wear it during the sleep study since it’s the kind that goes over my head and under my chin. Seems like not, since they stick so many wires on your scalp.

[Jay Aitchsee]

Ok, Jay...I’ll try to take it one step at a time.

Yes, I understand your wanting to get ahead of the game. At least now you know you can.
(and yes, masks can be mixed and matched with other brands of machines)

From what you've told us, it sounds as if your DME might be affiliated with your doctor. Maybe not, it just sort of sounded that way. No matter, what I'm getting at is that you don't have to use a specific DME, other than one in your insurance network. Some DME only handle one brand, so if you find that your DME doesn't carry the brand you want, you can go to another. So, after your study, if it looks like you'll get a new machine, you can begin thinking about which brand you want and then if your DME carries it. Really, I think there are only two brands to consider, Respironics or ResMed. I think there might be a thread or two compairing the two which will be helpful. Or, you can always start a new thread asking for recommendations.

Anyway, you don't have to worry about that tonight. Just try to get a good night's sleep and let us know how it goes.

[Smargie]

Well...I'm back from the sleep study. It went horribly! It didn't feel like I slept at all the whole night--I may have dozed a few times but then was woken by the machine again.

Because I have chronic pain and anxiety I take both a muscle relaxer and a medicine that's in the same family as Valium (Tranxene). I also have a pain pump with Dilaudid in it, but the advantage of having an opiate delivered straight into spine rather than orally is that it significantly decreases the side effects. At my first appointment with the sleep doctor she thought I probably had central sleep apnea, because of the meds I take and also because I don't snore or ever gasp for breath. She also commented that I don't know how to go to sleep on my own. (I was referred because of 2 high CO2 blood lab values in a row.) Anyway, last night I doubled the amount of the Tranxene, and I went to bed later the night before and got up earlier the day of, so that I got 5 hours of sleep. I was really tired yesterday and it was very hard to resist taking a nap, as I usually do.

The point of all of the above is that I was good and sleepy when the test started. I'd used a dreamwear nasal mask with pillows at home and wanted to try the one without the pillows, because I was always having to adjust them to stop them from leaking and they really irritated my nostrils (and because the LankyLefty says they're much better ). The tech gave me just the mask I'd wanted. I spent the first hour watching a show on my Ipad, and noticed that the pressure seemed much stronger than what I was used to at home. I have an auto cpap and usually use the ramp for ten minutes...but this felt like a lot of air being forced at a rate I wasn't comfortable with. When I put down the Ipad and tried to sleep I just couldn't. It was really loud--I think it was the blowing from the mask itself and not the machine. I kept trying to adjust it so it wouldn't blow in my face and it would work for a few minutes and quiet down, but not for long. Eventually the tech came in and tightened the headgear and that helped a little. Then the ASV started and that was really uncomfortable. I felt like I was being blown up like a balloon and it gave me a stomach ache. When the tech came back in at 6 he agreed that I hadn't slept much, but said the pressure was only around 12 (but the air that blows out of the vent was MUCH stronger than I'd ever felt at home). I asked if he was able to get enough data and he said "oh yeah!" and said that even though I'd only slept a little he still got the data (?!). During my first sleep test it felt like I'd slept for about 2 hours, was awake for 3 and then slept another 2, but the report showed that I was in stage 2 a lot when I thought I was awake, so who knows?

I don't know if I made a mistake by using a different mask, if it's just really different being tested when you're on a machine, if it was the ASV, or what. I'm not feeling very optimistic about it, though. I can't believe that the data he got was representative of me sleeping. And if it they decide it was and that I do need an ASV I can't imagine being able to sleep while using it. And boy do I have a sinus headache and dry back of the throat now! I did take a look at the machine and saw that is was Respironics...maybe a Resmed would work better? Is it possible I'll have to have yet another sleep test?

On the bright side I was able to sleep for 5 hours when I got home and then my son made me pancakes and bacon for a very late Mothers Day breakfast. Happy Mothers Day to all!

[Jay Aitchsee]

Well, at least it's done. On a positive note, most people have trouble judging how much they've slept and many think they have not slept enough during a sleep test, yet they have. So, there's hope there.
Do you have a follow up scheduled yet?

[Smargie]

Jay—yes, I’m very happy to have that behind me. My follow up appointment is on June 24. My doc is actually out of the country vacationing on an island with no WiFi, so she said she’d have a colleague read the results. I’m guessing probably very few people sleep well during these studies, though in my case I’d say I dozed at best this go round. I didn’t have any CPAP at all during my first study, so this one was really different.

Last time I got my results in about a week. I was given the choice of 3 DMEs based on my insurance. Since they only told me their locations I just chose the closest one. Would I have to go back there again since I’m still renting my machine from them? And is it really true that it’s up to the patient to choose the brand and model, so long as it fits the prescription?

I’d like to figure out how to have more input this time. I guess I’ll come back here and ask what to do after I get my results, though last time all they told me was that I had moderate apnea and that the doc had ordered a nasal mask. The prescription went straight to the DME and they had the machine and mask waiting for me when I got there. They also had a copy of my sleep study and gave it to me. I think I’ll ask for more details from the doctors office this time...maybe ask to speak with a non clerical person about the results. Whatever happens I KNOW I’ll be needing help from you all to get the settings adjusted properly.

Thanks to all who’ve helped me so far!

[tyrone747]

Does anyone get throat breathing (for lack of better term). Like the seal from the nasal passage to the mouth opens even though your mouth is closed? I think that's what happens with me sometimes and I get weird sounds that seem to come from inside my head.

[Jay Aitchsee]

Jay—yes, I’m very happy to have that behind me. My follow up appointment is on June 24...
is it really true that it’s up to the patient to choose the brand and model, so long as it fits the prescription?

Hi,

Yes, you have quite a bit of control in choosing your equipment, though it may not seem like it. Essentially most, if not all, insurance companies won't care at all what brand of machine you get as long as it matches your prescription, although your Doctor may have a preference.

If you get a new machine, you will have to take your old one back to the DME you got if from, but you won't have to get a new machine from them. They obviously handle Respironics, since that is what you have, but they may not handle ResMed. Once your prescription is sent to a DME, you don't have to accept what they offer. You can refuse, ask for a different model, or have your prescription sent to another DME.

The next thing, I think, is to find out from the doctor's staff if your prescription will be changing and, if it is, to what. If it is changing, you might want to ask if they think the doctor has a preference as to brand (although, even if she does, it doesn't mean that's what you have to get). As you mentioned, you will probably want to meet with a nurse, nurse practitioner, PA, or some other comparable doctor's assistant to answer your questions and concerns.

Next, you should come back here, start a new thread, something like "Getting a new ASV, What brand should I get" and see what the forum thinks. Here, it might help to have a copy of your prescription. You can get one when you visit the Dr's office. Then, when you settle on a brand and model, you can seek out a DME to provide it.

After you get your new machine, the folks here will help you with the settings.

Just remember, you are in control. The doctor, staff, and DME work for you and don't have to accept anything you are unsure of. If questions come up, come back here for advice.

It will all work out great

[Smargie]

Does anyone get throat breathing (for lack of better term). Like the seal from the nasal passage to the mouth opens even though your mouth is closed? I think that's what happens with me sometimes and I get weird sounds that seem to come from inside my head.

Well, I’ve certainly never had that or read about it here on the forum, but I’m pretty new. Even though the title of this thread is “Mouth Breathing” it’s strayed very far from that topic and has basically become about my strange journey so far. I think you’d get much better feedback if you started a new post of your own about throat breathing (or whatever you decide to call it. )

[zonker]

Does anyone get throat breathing (for lack of better term). Like the seal from the nasal passage to the mouth opens even though your mouth is closed? I think that's what happens with me sometimes and I get weird sounds that seem to come from inside my head.

Well, I’ve certainly never had that or read about it here on the forum, but I’m pretty new. Even though the title of this thread is “Mouth Breathing” it’s strayed very far from that topic and has basically become about my strange journey so far. I think you’d get much better feedback if you started a new post of your own about throat breathing (or whatever you decide to call it. )

you know, if you want, you can change the title of this thread. like maybe "smargie's therapy thread". or anything else you'd like.

[tyrone747]

Neat, didn't know you could do that. Sorry to butt in.

[Smargie]

Tyrone, I didn't mean to imply that you were butting in at all... I'm sorry if it came off that way. I just wanted to let you know that your question might get lost in this particular thread.

Zonker, I've been thinking about starting a new thread since the topic has strayed so far from the title, but I was trying to follow the 3 month rule. It didn't occur to me that I could just change the name. Thanks, I'll do that! (Provided I can figure out how)

[Pugsy]

Anyone wanting to change something within a post of theirs all you have to do is go to that post and click on the little pencil thing on the upper right of the forum editor.
Then you can make any chance you wish including the subject line for that post.
Don't forget to click on "submit" for any changes to stick.

So if you want to change the main subject line you go back to the very first post and click on the pencil to edit...make your changes and click on submit. This will change the main subject line that shows up on the forum as thread name.
It won't change the topic line for all those other replies but any subsequent replies will reflect the new subject line from the very first post.

Also...I can do it now with this post of mine and I will....smargie's therapy thread...anyone can change the subject in a post that they created.

Now I can edit anyone's post and change the subject line but that's a lot of work for a thread 5 pages long...so I don't normally do that but it can be done....not really needed though.
Just edit the very first post in the thread and change the subject line to whatever you wish to have it show up as you want others to see it.

People can do this to correct typos in the subject line if they wish or if they just want to change to something that reflects the overall thread content like in this thread...it quickly morphed into issues not related to mouth breathing at all.
Smargie's therapy thread would be an appropriate more inclusive name.

When she starts the ASV therapy then maybe starting a new thread "Smargie's ASV thread" might be a good inclusive choice.

Anyone wishing me to fix something or change something in one of their posts or threads and they can't figure out how to fix it...let me know and I will fix it for you.