UPDATE: My new backup plan for power outages. . .

[DreamStalker]

"Also, OSA severity is independent of treatment pressure/titration. "

Dreamstalker, did you read the "news" item on the forum today where a research doctor reported in CHEST Journal that his study determined those with greater severity OSA require higher pressure? Would like to have seen the details of that study. Hope Medicare doesn't get wind of that and use it to justify not paying for titrations unless a set pressure based on a predetermined scale correlating to severity is tried first. Also reported that a higher BMI is not an indicator of a need for higher pressure.

I just now went and read it. I suppose that "levels" is to be interpreted as "pressure" ... so according to this study I stand corrected. The question is what was the sample size? Was bias removed from data? Yes, it would be nice to see the details and more importantly the data.

I have a very high severity of OSA so I guess my high BMI cancels out my need for very high pressure (mine is less than 12).

[rested gal]

How clever, Rosemary! Sounds like an excellent plan that you've researched thoroughly and are going about very sensibly. Will also be interested in your updates as you make the gradual TAP adjustments.

For new readers who haven't come across discussions of the TAP (Thornton Adjustable Positioner) and other dental devices:

LINKS to surgery, turbinates, Pillar, TAP experiences
viewtopic.php?t=2836

[RosemaryB]

Oral appliances are FDA approved for mild to moderate OSA. I understand that they really only work for mild and barely moderate OSA.

Likely this is based on statistics, and with statistics there are always outliers (people who are the exception). I do think some people with severe and/or high pressures may use dental devices to help decrease the pressure they use as well. Although I have moderate, I'd still probably be trying it if I had severe. The idea of depending on the electric company to prevent apneas isn't to my liking. We are used to having easy access to power, but with longer power outages and worse (like hurricane Katrina), it seems good insurance. Even if I had severe and was using it with a cpap, I'd still be glad to have it knowing it is doing some good. I probably wouldn't use it to go camping, though.

I would never use it on its own without a sleep study to confirm that it's working. If someone with severe OSA wants to spend the money to give it a try they may succeed, but it needs to be confirmed with a sleep study to see how it's affecting their AHI and IMHO they need to be wearing a cpap the whole time they are getting used to it, then do the sleep study for one night without the cpap but with the device to see if it's working. That way, if it's not, they can be awakened and go back to cpap. I'm very conservative when it comes to this. Cpap is reliable way to go for nearly everyone.

This costs a lot of money, that's the problem. For me it is a priority, so my 17-year-old car will have to serve me a while longer, or it's replacement will have to cost less. Plus the camping, of course!

[RosemaryB]

How clever, Rosemary! Sounds like an excellent plan that you've researched thoroughly and are going about very sensibly. Will also be interested in your updates as you make the gradual TAP adjustments.

For new readers who haven't come across discussions of the TAP (Thornton Adjustable Positioner) and other dental devices:

LINKS to surgery, turbinates, Pillar, TAP experiences
viewtopic.php?t=2836

Thanks for that link, RG. I, too, will read through them again when I have time to see if there's anything I've missed.

[rested gal]

I doubt if you've missed anything, RosemaryB. Looks like you've done your research very, very well!

Wise words you posted here:

I would never use it [the dental device] on its own without a sleep study to confirm that it's working. If someone with severe OSA wants to spend the money to give it a try they may succeed, but it needs to be confirmed with a sleep study to see how it's affecting their AHI and IMHO they need to be wearing a cpap the whole time they are getting used to it, then do the sleep study for one night without the cpap but with the device to see if it's working. That way, if it's not, they can be awakened and go back to cpap. I'm very conservative when it comes to this. Cpap is reliable way to go for nearly everyone.

[RosemaryB]

OK, I have been looking at my Encore Pro results for the last 5 days. In a couple of cases there were more leaks than usual, but no Large Leaks. I'm not wearing a chinstrap or tape, so I expected this. But most of the time, my leak line is very good and pretty level. This means that I can wear the TAPIII without a chinstrap or taping during the time I'm wearing cpap+TAP. I'm very happy about this. I also wanted to say that I looked at this feature when I chose the device. Some devices (previous TAP's for instance) do not allow you to close your mouth fully while they are in place. This one does and it seems to be working well enough to wear on it's own with a pillows type mask. A few extra leaks, but normally I have an exceptionally level level leak line. My AHI is ok, too, similar to what it has been. So far, so good. I'm still adjusting very slowly, more slowly than the dentist recommended. But then, he wants me to see quick success. I want to see my jaw stay good, pain-free and gradual success is fine with me.

[RosemaryB]

A quick update: I have the TAP III extended nearly all the way out. A few nights ago I tried it fully extended and my jaw joint joint got very sore. It had been pretty trouble-free up to that time since I've been going slowly. Tonight, it being a new year and all, I will celebrate by again trying it all the way out. Once that's done and comfortable with, I'll sleep with the machine set to the lowest level and see how many apneas I get.

I also got to see an ENT specialist since I last posted. One of her specialties is OSA. She was good. She looked at the structure of my nose and throat with a camera. There are no obvious blockages while I'm awake. I had my tonsils and adenoids out when I was a kid, so I didn't expect huge blockages, but still it's good to have had it done and rule out other causes.

She knew all about UARS/spontaneous arousals or whatever it's called. So, for my sleep study with the dental device, I will also have some extra testing for UARS. I'll report back on what the test is like and how it goes. It includes some kind of a sensor that goes down your nasal passages I think. More info once I get it done. Both on the TAP III and the UARS testing in a separate thread.

She also gave some stats about the dental devices. For mild OSA they find them to work in 80% of the cases. For moderate OSA it's 60% (I'm moderate). For severe it's 40%. Not sure where these came from, but I was impressed that she knew more about OSA than anyone I've talked with so far. Next time I see her, I'm going to ask her how they measure up to cpap in effectiveness for those 80, 60, or 40%. IOW, comparing the two (dental and cpap) devices that ARE successful, how much does each one help.

I also saw this report, something like what I read that pushed me over the edge to finally try the dental device. it's about the electric grid infrastructure, given a grade of "D" by the American Society of Engineers http://www.asce.org/reportcard/2005/page.cfm?id=25

[roster]

Happy New Year Rose,

Just a note to let you know I appreciate this thread and your updates. I am interested in the dental device and in testing for UARS. The latter is for my wife and maybe daughter.

Oh great, let the power grid fall apart and see how the death rate for our members spikes.

Regards,

[Mtnviewer]

I've been using the Klearway oral appliance for about 3 years now. I had hoped that it would more helpful and especially able to be monitored for it's effectiveness than it has been. I had also hoped that for me it would be a good alternative to CPAP. Before getting the appliance 3 years ago, I had tried CPAP for about 6 weeks but had a hard time with it, didn't know about this forum and so I quit using it. And now the even the mild effectiveness of the Klearway appliance is waning and I'm back and determined to getting PAP therapy to work for me. I may still use an oral appliance as well, but only to make sure that my jaw stays closed while using the APAP.

I had two PSG studies and had mild to moderate results, so I had hoped that the oral appliance would work, and now I realize, that the orthodontist and the inventor of the Klearway also felt that I'd be a suitable candidate. After getting to know him better, I soon realized that he needed my money, $2300, more than his belief that the appliance would really work well for me. He has a big office, staff, BMW, nice house in expensive area and exotic vacations that I heard of, to pay for with profits from selling the appliance. Sorry for my cynicism but it is based on my experience with him, and from the results and from his misinformation / lies to me. Also these devices are HUGE and I mean HUGE profit makers for these guys. The costs of these things is totally out of whack with what they're worth in molds and plastic.

At any rate, and IME, the best thing that these oral appliances can do is to keep the lower jaw closed. I tried my appliance at various expansions forward and backward and settled on 6 mm's forward, which is not much and the "Dr." always wanted to do far more. However, there is no way in hell that I wanted my bite changed significantly more than it already had been at 6 mm's and so I had sadly lost a very very good bite, which I still very much miss. Chewing is just not the same and I've learned also extremely important to good health. My main complaint to the "Dr." about his repeated requests to keep moving the lower jaw forward was to first prove to me that it would make a difference. There doesn't seem to be any measureable test to prove better airflow at any forward expansion, other than another sleep study and those are fraught with variables anyway and can't be done often enough to make a definite connection. I would sit in the chair and jut my jaw forward, breathe in and out, and tell him that I was not getting any more airflow with a severe forward expansion than I was with my normal bite. He also did not want to listen to my sleeping experiences that my airway was mostly being blocked by my lower jaw opening than requiring any lower jaw movement forward. I discovered this after a few weeks of little success with the appliance. He was constantly dismissive of my experience. I also told him that there was just too much movement allowed side to side, and open and closed in the appliance and that I wanted much less, and that I wanted the thing basically wired shut at 6 mm's maximum. He got upset at this, and refused to help me test this idea until I told him that I'd do the modifications to the appliance on my own as soon as I got home anyway. At least if he helped, then he'd get the benefit of the test. He did so reluctantly, and he drilled some holes and I used dental floss to prevent movement in the appliance and THAT WAS THE GREATEST BENEFIT of the appliance, meaning, keeping my lower jaw from opening. I did not require forward jaw movement, but rather just keeping my jaw closed. How I felt and doing sound recordings of these differences was proof to me of what I needed and I'd bet of what most folks need that don't have lower jaw problems or that actually do need forward expansion to open the airway. My orthodontist didn't like my results and once my pre-paid visits were up, I stopped seeing him. The only way that he could quantify how his appliance might be working was based on how I felt, yet without forward expansion, he didn't want to hear that I felt better without it than with it, other than feeling better with the device wired shut.

Now that my Klearway is wearing and it's not staying on my teeth as well as it used to, I will not be getting another, as it's too expensive and I don't have insurance to pay for it. But for my application of keeping the lower jaw shut, it's still FAR better than any chin strap that I've tried, which seems to also pull the jaw too far back. The other negative with the oral appliance is drooling. It was very severe for me the first couple of months, but now years later, it's still there, some nights less than others. I'm still waiting for my APAP parts and software to arrive to get it going and I'll be testing the use of APAP with and without the Klearway appliance. I am also researching much less expensive types of oral appliances that will just help to keep my lower jaw up, which is THE main problem for me. I also have a FF mask on order.

So be aware that your bite will change and your teeth may permanently shift position. I was warned of this, but I did not expect it to be as severe as it was. I regret losing my previously good bite and my previous ability to chew food properly. Also make sure that you indeed do need forward advancement, vs. just keeping the lower jaw up and closed. The latter may not need jaw advancement at all and don't let the dentist do it. I'd suggest that you first try any oral appliance for it's ability to keep your jaw closed and even tying or wiring it closed before you try jaw advancement. Also press your dentist for a way to measure the before and after airflow benefit from increasing jaw advancement. I don't think that is as important as keeping the jaw closed except for special cases.

[roster]

......... Sorry for my cynicism but it is based on my experience with him, and from the results and from his misinformation / lies to me. .........

I would not consider this cynicism based on what you have told us. Maybe "realism" fits better.

......... I also have a FF mask on order. .........

That is probably a good decision.

Thanks for your detailed story about your experiences with the oral appliance.

Good luck,

[GaryGarland]

for what it's worth, if you're seriously concerned about a power outage i'd consider the battery pack from cpap.com
i'm mildly concerned so i bought a $45 battery/power station from sam's club (which i recently returned - way too bulky, fairly heavy, and the inverter was loud (the running fan) - i figured i wouldn't get a full night out of it though it may have been possible)
i have a $50 (from years ago) 12 volt battery/car jumper plastic handled thing - i'm going to see about replacing the battery, and i'll have that as my standby source. it uses 12v dc to charge (via wall plug) but i'm sure i can charge with a cord from my car to the unit - so if there was a week long power outage i'd just take the thing along while driving the car.
i ordered a dc inverter from ebay so i can use the heater, but i've since decided i want to get the $79 proprietary resmed plug (which i think will be quieter and also more power efficient) - i won't use the heater, and i'm going to sell the inverter either on cpapauction or ebay.

[Guest]

My "big" Christmas present was a battery backup. This was a "practical" Christmas at my family's home.

[RosemaryB]

Happy New Year Rose,

Just a note to let you know I appreciate this thread and your updates. I am interested in the dental device and in testing for UARS. The latter is for my wife and maybe daughter.

Oh great, let the power grid fall apart and see how the death rate for our members spikes.

Regards,

Happy New Year, Rooster. I will be letting everyone know about the testing for UARS, perhaps in a different thread. I just got some info about it from the sleep lab but haven't had time to read it yet. It looks like I'll be getting the sleep study some time in March.

My latest tests are this: Wearing the TAPIII, last night I used my apap at a pressure of 4.0-4.5 (I set it there to record flow limitations which it only does in apap mode. No particular reason except to see what they were like). My AHI for the night was 1.7, not too different than many nights with the cpap set at my regular pressure. This is good news. I think the dental device is working somewhat, but I won't know how well until the sleep study confirms it.

Unfortunately, I've been unable to side-sleep all night even wearing the pillow stuffed backpack, I end up sleeping on my back, comfortably I might add. Kind of like a bit of extra yoga back stretching during sleep So, testing the dental device plus low pressure cpap with exclusive side sleeping is not working. The next step is to get a basketball to put in the backpack . Maybe this weekend I'll try this if I have time to get a basketball or rig something else up to keep me sleeping on my side.

Once I test this I'll post again (successful side sleeping). I know that side-sleeping was a big issue for you, Rooster. In my sleep study I had most of my apneas and hypopneas while sleeping on my back. I was sleeping successfully on my back with the pillow/backpack, but after a while it didn't work. I got good at rolling on my back despite that. I gave up since my numbers were good enough with cpap. But I'm suspecting that with the dental device sleeping on my back will make a much bigger difference. That's why it's so important to me.

[RosemaryB]

I may still use an oral appliance as well, but only to make sure that my jaw stays closed while using the APAP.

Mtnviewer, I agree with you there, it's the most comfortable substitute for a chin strap I've found and no mouth-taping either. I love it, though it's waaaay too expensive as a chinstrap substitute if it doesn't work otherwise.

After getting to know him better, I soon realized that he needed my money, $2300, more than his belief that the appliance would really work well for me. He has a big office, staff, BMW, nice house in expensive area and exotic vacations that I heard of, to pay for with profits from selling the appliance. Sorry for my cynicism but it is based on my experience with him, and from the results and from his misinformation / lies to me. Also these devices are HUGE and I mean HUGE profit makers for these guys. The costs of these things is totally out of whack with what they're worth in molds and plastic.

I'm well aware of this with my dentist, too. I don't like it but it seems to be the only way to get a device that is custom made. I think it's par for the course with all kinds of sleep medicine that the majority of them, I suspect, are in it for reasons of greed and don't care much about the patient. I do think there are some good ones, but probably in the minority from what I see, both the sleep doctors that churn out boilerplate reports with the DMEs that sell the cheapest equipment at inflated prices and the sleep dentists that don't know much about sleep apnea with the labs that together sell you plastic devices for outrageous prices compared to their actual cost. (Maybe cpap.com should start another branch for these devices ) My dentist is clearly in it for the money, but he may be competent as well and that's what I'm hoping.

So be aware that your bite will change and your teeth may permanently shift position. I was warned of this, but I did not expect it to be as severe as it was. I regret losing my previously good bite and my previous ability to chew food properly. Also make sure that you indeed do need forward advancement, vs. just keeping the lower jaw up and closed. The latter may not need jaw advancement at all and don't let the dentist do it. I'd suggest that you first try any oral appliance for it's ability to keep your jaw closed and even tying or wiring it closed before you try jaw advancement. Also press your dentist for a way to measure the before and after airflow benefit from increasing jaw advancement. I don't think that is as important as keeping the jaw closed except for special cases.

I think it's awful that it has affected your jaw and that your dentist was so ratty about it all.

My dentist did measure the airflow with a pharengometer and it seemed to make a difference. But I'm not sure if the pharengometer measuring what happens when you are awake can determine what happens when you are asleep since your muscle tone changes, etc.

I do know that my bite is changing, for me it's a bit for the better since I had an underbite and quite a bit of TMJ. My teeth meet differently and it feels odd, but my bite is more even than it was before.

I used to wear a bite guard but couldn't do this with the cpap. This device seems to help the TMJ so far and my device is extended all the way out. It doesn't seem very far out and I wonder if the dentist made a mistake and didn't make it far enough out. If so, and if my sleep study shows improvement that's significant, but still higher than I'd like, I may eventually get another one made that takes my lower jaw and advances it more. But I won't go back to this dentist because I did feel the money was too important to him and he did not answer my questions.

Thanks to this forum, I see that many sleep professionals, medical or dental, are too swayed by greed to do a good job. There are exceptions and I was impressed with the ENT I saw recently, for example. cpap.com is another big exception in the DME side. But generally, it seems to be built into the culture of the profession.

I do think that these devices don't work for everyone and don't work as dependably as the cpap. But I'm still hoping it will work well enough for me so I have more than one option. I appreciate your posting your experiences, since it may help people see the pitfalls if they are interested in dental devices.

[RosemaryB]

for what it's worth, if you're seriously concerned about a power outage i'd consider the battery pack from cpap.com
i'm mildly concerned so i bought a $45 battery/power station from sam's club (which i recently returned - way too bulky, fairly heavy, and the inverter was loud (the running fan) - i figured i wouldn't get a full night out of it though it may have been possible)
i have a $50 (from years ago) 12 volt battery/car jumper plastic handled thing - i'm going to see about replacing the battery, and i'll have that as my standby source. it uses 12v dc to charge (via wall plug) but i'm sure i can charge with a cord from my car to the unit - so if there was a week long power outage i'd just take the thing along while driving the car.
i ordered a dc inverter from ebay so i can use the heater, but i've since decided i want to get the $79 proprietary resmed plug (which i think will be quieter and also more power efficient) - i won't use the heater, and i'm going to sell the inverter either on cpapauction or ebay.

Hi Gary. I do think everyone using a cpap should have battery backups, and generators if possible (not possible in my condo). I do have 2 backup batteries. One is a glassmat battery pack from Xantrex and the other is from cpap.com and is a smaller one. I plan to get a larger glassmat deep cycle battery when my budget recovers from the "dental adventure" I'm now on, depending on how much my medical insurance reimburses me, too.

These batteries are good for shorter outages. But the more I read about the fragility of the power grid and its future, the more I am concerned about having other options. People think that it will be repaired, but living in the "rustbelt" I'm not sure that money is going to be there any time soon either from the electric companies or from the gov't. So, I want as many options as possible. Plus the dream of camping and traveling without a machine or battery pack is like a cpaper's wildest fantasy life. I'm hoping it will work for me.

Though I may need to carry a backpack with a basketball on planes and backpacking . (See above post about side sleeping)