UARS, low numbers bad sleep, MMA, now on CPAP

Loreena wrote:It's a mouthguard that looks like it might work to keep the tongue out of the way. Why can't we buy it online? Or do we have to pay thru the nose at the dentist to get one?!

It has to be custom fitted by a dentist, can require multiple adjustments to the tail and costs anywhere from 2-5k depending on where you go.

My insurance covered it at 100% because it's billed as a medical device.

jawzz wrote:

Loreena wrote:It's a mouthguard that looks like it might work to keep the tongue out of the way. Why can't we buy it online? Or do we have to pay thru the nose at the dentist to get one?!

It has to be custom fitted by a dentist, can require multiple adjustments to the tail and costs anywhere from 2-5k depending on where you go.

My insurance covered it at 100% because it's billed as a medical device.

Thanks. Does it work? I'm hoping companies will make knock-offs and market them in stores so I can try them for cheap. I think the concept is doable for stores.

Loreena wrote:Thanks. Does it work? I'm hoping companies will make knock-offs and market them in stores so I can try them for cheap. I think the concept is doable for stores.

I'm picking it up in a couple hours, but it may take a while to get the full benefit because apparently the tail adjustment process can be really extensive.

I'll report back once I know for sure if it's working.

Also, this concept is probably doable at a much cheaper price point like you say. All you would need is a boil and bite mouth guard with a tail in the back that can be adjusted up/down and front/back. The tail part would be tricky, but not impossible.

jawzz wrote:Also, this concept is probably doable at a much cheaper price point like you say. All you would need is a boil and bite mouth guard with a tail in the back that can be adjusted up/down and front/back. The tail part would be tricky, but not impossible.

Exactly. I'm kicking myself for not thinking this up first. The concept is pretty straightforward. If it works, this guy could be a multimillionaire, even if it were sold only over-the-counter, I think. I'm really interested to hear back from you, so thanks!

7 months on ASV now, and 18 on CPAP. These treatments, particularly the ASV, have changed my life. I feel better every month. I feel better on 7 hours of sleep now than I did on 11 before. I am slowly but surely digging my way out from 10-15 years of sleep debt from untreated / barely-treated sleep-disordered breathing. After a decade of wondering "Why am I tired all the time? Can it be sleep apnea when I'm young, thin, and my AHI is only 10?", then after my MMA surgery, "Can it be sleep apnea when my AHI is only 5? Is UARS real?", I now know the answer is yes, UARS is very real.

And after a decade of trying surgeries, dental devices, breathe-rite strips, nose sprays, vitamins, and every quack treatment around (PowerLung, Alpha-Stim, Nozovent...), I've found that CPAP, the "gold standard" of treatment is (no surprise) what works the best. And further, that the more sophisticated version of CPAP - ASV - works much better, at least for me. ASV may not have been developed for UARS, but Dr. Krakow's lab found it dramatically decreased my RERAs, subjectively I find the sleep quality significantly higher each night, and over the months it has really added up.

It's been a long and frustrating journey, and I certainly did my part to make it harder by resisting CPAP for so long. I am grateful to the doctors who told me I had UARS (like Dr. Guilleminault & Dr. Li at Stanford, Dr. Park, Dr. Krakow) and glad I persevered despite the doctors who said my problem was bad sleep hygiene, there is no such thing as UARS, I can't have sleep apnea with an AHI of 5, and that ASV is for central sleep apnea only. I appreciate the collective wisdom of this board as well. Best to all.

I am so happy for you Patrissimo, knowing how much you have suffered.

And kudos to Dr. Krakow for thinking outside the box. Of course, not everyone is going to benefit like you but it should be definitely be an option for folks who aren't doing well on cpap in spite of having the "perfect data"

patrissimo wrote:7 months on ASV now, and 18 on CPAP. These treatments, particularly the ASV, have changed my life. I feel better every month. I feel better on 7 hours of sleep now than I did on 11 before. I am slowly but surely digging my way out from 10-15 years of sleep debt from untreated / barely-treated sleep-disordered breathing. After a decade of wondering "Why am I tired all the time? Can it be sleep apnea when I'm young, thin, and my AHI is only 10?", then after my MMA surgery, "Can it be sleep apnea when my AHI is only 5? Is UARS real?", I now know the answer is yes, UARS is very real.

And after a decade of trying surgeries, dental devices, breathe-rite strips, nose sprays, vitamins, and every quack treatment around (PowerLung, Alpha-Stim, Nozovent...), I've found that CPAP, the "gold standard" of treatment is (no surprise) what works the best. And further, that the more sophisticated version of CPAP - ASV - works much better, at least for me. ASV may not have been developed for UARS, but Dr. Krakow's lab found it dramatically decreased my RERAs, subjectively I find the sleep quality significantly higher each night, and over the months it has really added up.

It's been a long and frustrating journey, and I certainly did my part to make it harder by resisting CPAP for so long. I am grateful to the doctors who told me I had UARS (like Dr. Guilleminault & Dr. Li at Stanford, Dr. Park, Dr. Krakow) and glad I persevered despite the doctors who said my problem was bad sleep hygiene, there is no such thing as UARS, I can't have sleep apnea with an AHI of 5, and that ASV is for central sleep apnea only. I appreciate the collective wisdom of this board as well. Best to all.

49er wrote:I am so happy for you Patrissimo, knowing how much you have suffered.

And kudos to Dr. Krakow for thinking outside the box. Of course, not everyone is going to benefit like you but it should be definitely be an option for folks who aren't doing well on cpap in spite of having the "perfect data"

Hey, it's one night in the sleep lab to see if it works for you. Or renting a device for a month, if you need more data/tweaking. May not work for everyone, but seems to happen often enough it's worth a shot for others who have stubborn SDB / EDS.

They should try funding research studies by Kickstarter. We could get some sleep studies funded on this board.

patrissimo wrote: And after a decade of trying surgeries, dental devices, breathe-rite strips, nose sprays, vitamins, and every quack treatment around (PowerLung, Alpha-Stim, Nozovent...),

I'm glad to hear that things are working out for you. As the person who recommended PowerLung to you, however, it's disheartening to hear that you think it's a "quack" treatment.

My experience has been diametrically opposed to yours. I did not resist CPAP, and spent a year and a half in vain making endless trips to Stanford trying to resolve my SDB. It was by far the worst experience of my life. Besides surgeries, breathing exercises were the only thing that helped me. (I subsequently discovered another technique to help with sleep, although it's probably not directly related to SDB.) I ended up switching from PowerLung to PowerBreathe and developed techniques that are serving me very well. My RDI in my last sleep study was 6.4 with AHI 3.6, and my life is not dominated by sleep issues.

UARS is just not all that well understood. Things that work for some people don't work for others. That doesn't make them quack treatments.

I hope it goes without saying that people who have significant desaturations will probably be best served by some form of PAP therapy.

syzygy wrote:

patrissimo wrote: And after a decade of trying surgeries, dental devices, breathe-rite strips, nose sprays, vitamins, and every quack treatment around (PowerLung, Alpha-Stim, Nozovent...),

I'm glad to hear that things are working out for you. As the person who recommended PowerLung to you, however, it's disheartening to hear that you think it's a "quack" treatment.

My experience has been diametrically opposed to yours. I did not resist CPAP, and spent a year and a half in vain making endless trips to Stanford trying to resolve my SDB. It was by far the worst experience of my life. Besides surgeries, breathing exercises were the only thing that helped me. (I subsequently discovered another technique to help with sleep, although it's probably not directly related to SDB.) I ended up switching from PowerLung to PowerBreathe and developed techniques that are serving me very well. My RDI in my last sleep study was 6.4 with AHI 3.6, and my life is not dominated by sleep issues.

UARS is just not all that well understood. Things that work for some people don't work for others. That doesn't make them quack treatments.

I hope it goes without saying that people who have significant desaturations will probably be best served by some form of PAP therapy.

As an FYI, the sleep doctor I saw yesterday called UARS a minor issue. I asked him about it when he seemed to be discounting the fact that I could have apnea as he didn't trust home sleep studies which is how I was diagnosed with apnea. Needless to say, I terminated the visit.

I will definitely look into the Power Lung and Power Breath treatments that you mentioned. Heck, if I thought crystals would prevent awakenings, I would look into it.

Sorry you have had such a tough time and I hope the PowerBreath treatment continues to work for you.

49er wrote:[

I will definitely look into the Power Lung and Power Breath treatments that you mentioned. Heck, if I thought crystals would prevent awakenings, I would look into it.

Sorry you have had such a tough time and I hope the PowerBreath treatment continues to work for you.

Thanks. I've been doing these exercises for about 20 months. Here's what's worked best for me: get the PowerBreathe with the lowest pressure, and work on endurance. The device itself comes with instructions to use it 2x/day at 30 rep maximum; I've tried this as well as high pressure/low rep and low pressure/high rep. The low pressure definitely works best for me. I do 500 reps/day (set of 50 or 100 reps) 5 days a week at a setting of 2 on the light pressure PowerBreathe. This is, I believe, equals to 33 cm/h2O. It took me a while to work up to this. There are also issues related to technique, but they're hard to explain.

I'm not saying that anyone should do this as a replacement for CPAP; I view it as a complementary therapy.

I have other techniques as well. Let me know if you're interested.

syzygy wrote:

49er wrote:[

I will definitely look into the Power Lung and Power Breath treatments that you mentioned. Heck, if I thought crystals would prevent awakenings, I would look into it.

Sorry you have had such a tough time and I hope the PowerBreath treatment continues to work for you.

Thanks. I've been doing these exercises for about 20 months. Here's what's worked best for me: get the PowerBreathe with the lowest pressure, and work on endurance. The device itself comes with instructions to use it 2x/day at 30 rep maximum; I've tried this as well as high pressure/low rep and low pressure/high rep. The low pressure definitely works best for me. I do 500 reps/day (set of 50 or 100 reps) 5 days a week at a setting of 2 on the light pressure PowerBreathe. This is, I believe, equals to 33 cm/h2O. It took me a while to work up to this. There are also issues related to technique, but they're hard to explain.

I'm not saying that anyone should do this as a replacement for CPAP; I view it as a complementary therapy.

I have other techniques as well. Let me know if you're interested.

I am definitely interested, thanks. Which PowerBreathe model did you get? I have seen different ones

Totally understand that this should be considered complimentary therapy.

49er

49er wrote:

syzygy wrote:I have other techniques as well. Let me know if you're interested.

I am definitely interested, thanks. Which PowerBreathe model did you get? I have seen different ones

Totally understand that this should be considered complimentary therapy.

49er

I got the POWERbreathe Plus 1 Light Black from chponline.com. I hope you find it helpful. It's been great for me, but I haven't found anyone else who's had a similar experience.

As for the other techniques, I would preface my comments by saying that while I believe that I definitely do have some kind of SDB problem, there's a complex interplay between the disordered breathing and the problems it creates. In particular, I noticed that if I had a bad night's sleep, it would create havoc with my circadian rhythms. I also had the classic UARS symptoms of having ice cold feet. I couldn't sleep at all without lots of warm clothing.

To deal with the circadian rhythm problems, I learned that using bright light in the evening for a few weeks is a big help. I got a kind of visor that shines light in my eyes. I was told at first to use it early in the morning, but that did exactly the opposite of what I wanted: it caused me to wake up at 3 am every day. Using it in the evening caused everything to even itself out. After a few weeks, I stopped using it, and use it only occasionally these days. This obviously is not directly related to apnea, but I found that using it improved my sleep nevertheless.

To solve the cold feet problem, I started taking a cold bath for 15 minutes before bed. It sounds goofy, but somehow it's helped my brain regulate my body temperature. Sleep and body temperature are closely related (although not completely understood), and this worked surprisingly well for me. When I don't take the cold bath, I sleep poorly. I would encourage anyone with persistent insomnia to try it out.

I got the POWERbreathe Plus 1 Light Black from chponline.com. I hope you find it helpful. It's been great for me, but I haven't found anyone else who's had a similar experience.

Thanks, I will look into this. Again, I am glad it has helped you.

As for the other techniques, I would preface my comments by saying that while I believe that I definitely do have some kind of SDB problem, there's a complex interplay between the disordered breathing and the problems it creates. In particular, I noticed that if I had a bad night's sleep, it would create havoc with my circadian rhythms. I also had the classic UARS symptoms of having ice cold feet. I couldn't sleep at all without lots of warm clothing.

To deal with the circadian rhythm problems, I learned that using bright light in the evening for a few weeks is a big help. I got a kind of visor that shines light in my eyes. I was told at first to use it early in the morning, but that did exactly the opposite of what I wanted: it caused me to wake up at 3 am every day. Using it in the evening caused everything to even itself out. After a few weeks, I stopped using it, and use it only occasionally these days. This obviously is not directly related to apnea, but I found that using it improved my sleep nevertheless.

Very interesting as I wondered if I have Advanced Phased Syndrome. Unfortunately, due to feeling drugged after eating dinner which I am looking into, I have never been able to use any type light device long enough to be benefit. Perhaps, I will revisit the issue if I find that resolving the other problem has not helped.

To solve the cold feet problem, I started taking a cold bath for 15 minutes before bed. It sounds goofy, but somehow it's helped my brain regulate my body temperature. Sleep and body temperature are closely related (although not completely understood), and this worked surprisingly well for me. When I don't take the cold bath, I sleep poorly. I would encourage anyone with persistent insomnia to try it out.

I don't get cold feet but many times in the evening, I am turning off the AC and putting on a sweater even though it is 80 degrees outside. I will try the cold bath. Nothing to lose.

Thanks for a very helpful post.

49er

syzygy wrote:

49er wrote:[

I will definitely look into the Power Lung and Power Breath treatments that you mentioned. Heck, if I thought crystals would prevent awakenings, I would look into it.

Sorry you have had such a tough time and I hope the PowerBreath treatment continues to work for you.

Thanks. I've been doing these exercises for about 20 months. Here's what's worked best for me: get the PowerBreathe with the lowest pressure, and work on endurance. The device itself comes with instructions to use it 2x/day at 30 rep maximum; I've tried this as well as high pressure/low rep and low pressure/high rep. The low pressure definitely works best for me. I do 500 reps/day (set of 50 or 100 reps) 5 days a week at a setting of 2 on the light pressure PowerBreathe. This is, I believe, equals to 33 cm/h2O. It took me a while to work up to this. There are also issues related to technique, but they're hard to explain.

I'm not saying that anyone should do this as a replacement for CPAP; I view it as a complementary therapy.

I have other techniques as well. Let me know if you're interested.

I am interested. But how do you keep from hyperventilating during the reps. I tried what you suggested, but on a lower setting, and felt the beginnings of hyperventilation in about 2 or 3 minutes. I would inhale through the Powerbreath, and then exhale slowly. Then after about 10 seconds since the inhale, begin the inhale for the next rep. What length of time do you inhale for? How long do you exhale, and how long do you wait between inhales? Finally, will I get used to this and no longer begin to hyperventilate, or am I just doing something wrong. Thanks for your response.

This thread got me curious about PowerBreathe, but after extensive research I decided that either "Expand-A-Lung" or "The Breather" would best meet my needs.

I've been fighting with my Airfit P10 nasal pillows off and on for a long time. Yesterday my Expand-A-Lung arrived in the mail.
I did the exercises as described, inhaling and then exhaling slowly through the device, resting between each repetition so that I could catch my breath.

My breathing was much more relaxed after the exercises, and I could breathe comfortably through the P10 pillows from the moment that I put them on.
I also felt more rested than usual this morning.

I tried using my Expand-A-Lung this morning but didn't really feel like I got much benefit from it.
I'll probably just do the exercises once a day, at bedtime.