I would kill a man for a good night's sleep, if I had the energy
April 23, 2014 5:25 PM Subscribe
I have sleep apnea. I'm looking for non-surgical treatments other than CPAP and BiPAP—I've tried both, and neither works for me.
I was diagnosed with severe obstructive sleep apnea a couple of years ago. I tried CPAP, which simply traded one cause of restless sleep (the apnea) for another (having a goddamn Darth Vader apparatus strapped on my face). Then I tried BiPAP, which didn't fare much better. Try as I might, I haven't been able to make myself wear the masks on anything approaching a regular basis.
What's more, they don't really seem to work when I do wear them—sometimes, I feel worse in the morning. I've tried several different sizes and styles of masks. I've played around with different settings for the pressure and (on the BiPAP machine) the breath rate. Nothing helps. I just can't stand breathing on the machine's terms and cadence, instead of my own.
I really need to get this shit under control, though—the effect on my quality of life, and the knock-on effects on my health, are intolerable.
So: I know there are new-ish options out there that aren't based on airway pressure. What I don't know, for any given option, is:
—where it falls on the continuum from "this is a bleeding-edge experimental therapy" to "this is a fully commercialized product";
—how widely available it is (i.e., can any old country doctor prescribe it, or is it only available in certain markets or to certain fancy hospitals?);
—whether it's typically covered by insurance (I have Blue Cross/Blue Shield, which seems to be pretty good).
FWIW, my ENT thinks that my obstruction is mainly caused by the soft tissue in the back of my throat, and I think he's right.
Basically, I'm trying to figure out what the most realistic option(s) are to pursue next. I asked my ENT about the new/emerging options, and while he wasn't dismissive, he also didn't seem very interested in discussing them. (I am considering finding a new ENT.)
You are not my doctor. I know that every case is different, and that what worked for you might not work for me.
I was diagnosed with severe obstructive sleep apnea a couple of years ago. I tried CPAP, which simply traded one cause of restless sleep (the apnea) for another (having a goddamn Darth Vader apparatus strapped on my face). Then I tried BiPAP, which didn't fare much better. Try as I might, I haven't been able to make myself wear the masks on anything approaching a regular basis.
What's more, they don't really seem to work when I do wear them—sometimes, I feel worse in the morning. I've tried several different sizes and styles of masks. I've played around with different settings for the pressure and (on the BiPAP machine) the breath rate. Nothing helps. I just can't stand breathing on the machine's terms and cadence, instead of my own.
I really need to get this shit under control, though—the effect on my quality of life, and the knock-on effects on my health, are intolerable.
So: I know there are new-ish options out there that aren't based on airway pressure. What I don't know, for any given option, is:
—where it falls on the continuum from "this is a bleeding-edge experimental therapy" to "this is a fully commercialized product";
—how widely available it is (i.e., can any old country doctor prescribe it, or is it only available in certain markets or to certain fancy hospitals?);
—whether it's typically covered by insurance (I have Blue Cross/Blue Shield, which seems to be pretty good).
FWIW, my ENT thinks that my obstruction is mainly caused by the soft tissue in the back of my throat, and I think he's right.
Basically, I'm trying to figure out what the most realistic option(s) are to pursue next. I asked my ENT about the new/emerging options, and while he wasn't dismissive, he also didn't seem very interested in discussing them. (I am considering finding a new ENT.)
You are not my doctor. I know that every case is different, and that what worked for you might not work for me.
I've been doing the low breathing technique known as Buteyko Breathing for the last few weeks. This is good for dealing with anxiety, asthma and sleep apnea. Its very easy to learn - breathe through the nose only, low and slow, etc.
At night I apply a small strip of microcore tape (about 3") across my mouth (fairly easily removed if I need to cough or say something) and I've noticed I sleep more soundly. My husband says I no longer snore - or have sleep apnea.
posted by Tullyogallaghan at 6:00 PM on April 23, 2014 [7 favorites]
At night I apply a small strip of microcore tape (about 3") across my mouth (fairly easily removed if I need to cough or say something) and I've noticed I sleep more soundly. My husband says I no longer snore - or have sleep apnea.
posted by Tullyogallaghan at 6:00 PM on April 23, 2014 [7 favorites]
A friend of mine swears by some sort of special custom-fitted mouthguard his dentist made for him, since CPAP wasn't a good fit for him either. Might be worth investigating, although I don't know if it works for all apnea causes or only certain ones.
posted by Stacey at 6:03 PM on April 23, 2014
posted by Stacey at 6:03 PM on April 23, 2014
Have you tried a CPAP or BiPAP combined with sleeping medication?
In any case, I hear ya, it took me almost an entire year before I could comfortably sleep through the night with mine.
posted by XMLicious at 6:21 PM on April 23, 2014 [1 favorite]
In any case, I hear ya, it took me almost an entire year before I could comfortably sleep through the night with mine.
posted by XMLicious at 6:21 PM on April 23, 2014 [1 favorite]
My sleep apnea disappeared once I lost a considerable amount of weight.
posted by KokuRyu at 6:28 PM on April 23, 2014 [5 favorites]
posted by KokuRyu at 6:28 PM on April 23, 2014 [5 favorites]
Like KokuRyu, weight loss solved my problems. I lost 80 pounds, and I've never slept better. Not everyone's apnea is caused by obesity. But if you are overweight, shedding pounds might help.
posted by Crotalus at 6:48 PM on April 23, 2014 [2 favorites]
posted by Crotalus at 6:48 PM on April 23, 2014 [2 favorites]
There are apparently oral appliances that some dentists offer. I used to transcribe for a cardiology office, and one of the cardiologists wrote a letter to some dentist who does this because he was extremely interested on behalf of the millions of patients he sees who LOATHE the CPAP machines. Anything to help them breathe better (i.e., get more oxygen, reduce various cardiovascular risks), in his opinion, would be worth study and further inquiry. He was interested in whether a sleep study would show good results with such an appliance worn by the patient. Since there were 15 of us on that account, I never heard anything more about it. They are apparently primarily meant for snoring, but for someone who rips the CPAP off in their sleep if they are not tied down, it is a last best resort or something.
One site I found had this description:
Oral appliance therapy can be an effective alternative for people who are intolerant of breathing machines like CPAP and prefer non-surgical treatment options. They may also be used as first-line treatment for primary snoring that is not associated with Obstructive Sleep Apnea.
Oral appliances are devices similar to sport mouthguards; they are worn during sleep to reposition the lower jaw and tongue and permit the airway to remain open, often reducing and even eliminating apneic events. Sometimes oral appliances must be assisted by CPAP to achieve desirable clinical results.
posted by AllieTessKipp at 7:50 PM on April 23, 2014
One site I found had this description:
Oral appliance therapy can be an effective alternative for people who are intolerant of breathing machines like CPAP and prefer non-surgical treatment options. They may also be used as first-line treatment for primary snoring that is not associated with Obstructive Sleep Apnea.
Oral appliances are devices similar to sport mouthguards; they are worn during sleep to reposition the lower jaw and tongue and permit the airway to remain open, often reducing and even eliminating apneic events. Sometimes oral appliances must be assisted by CPAP to achieve desirable clinical results.
posted by AllieTessKipp at 7:50 PM on April 23, 2014
I did read your question and I know you said non-surgical, but honestly it sounds like surgery could be a good way to go. I had sleep apnea caused by enormous tonsils and excessive tissue in the back of the throat. Once tonsils and extra tissue were gone, no more sleep apnea.
Sounds like it might be time to do a bit of research and then find a new ENT. Check out your local library and see what medical databases they subscribe to, do some searching through current research. I just did a quick scan of the health databases at my library and cropped up a few recent studies comparing CPAP to MAD therapy (MAD = mandibular advancement device) which indicates that although the CPAP was more effective in treating the sleep apnea, compliance with the treatment was better with the MAD because it's not as difficult and invasive to sleep with. IANAD and maybe that wouldn't work for you either, but if I can turn that up in 5 minutes of searching, sounds like there are other reputable options out there worth investigating. Good luck!
PS: I totally agree, CPAP = Darth Vader mask and completely sucks, excellent description!
posted by Athanassiel at 7:54 PM on April 23, 2014 [2 favorites]
Sounds like it might be time to do a bit of research and then find a new ENT. Check out your local library and see what medical databases they subscribe to, do some searching through current research. I just did a quick scan of the health databases at my library and cropped up a few recent studies comparing CPAP to MAD therapy (MAD = mandibular advancement device) which indicates that although the CPAP was more effective in treating the sleep apnea, compliance with the treatment was better with the MAD because it's not as difficult and invasive to sleep with. IANAD and maybe that wouldn't work for you either, but if I can turn that up in 5 minutes of searching, sounds like there are other reputable options out there worth investigating. Good luck!
PS: I totally agree, CPAP = Darth Vader mask and completely sucks, excellent description!
posted by Athanassiel at 7:54 PM on April 23, 2014 [2 favorites]
Response by poster: Athanassiel, I know there are various surgical options, but I've been reluctant to pursue the remove-tissue-from-the-back-of-the-throat thing, because my ENT made it sound utterly traumatic—intense pain, at least ten days off of work, having to re-learn how to swallow over a period of months, that kind of thing. Was that your experience?
Weight loss is definitely on the agenda. It's just really hard to work out when you're exhausted all the time, and of course long-term sleep deprivation changes the way your body processes energy, and makes it harder to burn off excess calories anyway. I'm hoping to find something that will help mitigate the immediate problem (the apnea) enough to make it easier to work on the weight issue.
posted by escape from the potato planet at 8:15 PM on April 23, 2014
Weight loss is definitely on the agenda. It's just really hard to work out when you're exhausted all the time, and of course long-term sleep deprivation changes the way your body processes energy, and makes it harder to burn off excess calories anyway. I'm hoping to find something that will help mitigate the immediate problem (the apnea) enough to make it easier to work on the weight issue.
posted by escape from the potato planet at 8:15 PM on April 23, 2014
Surgery wasn't that bad for me. I was in hospital for 2 nights, they had me on a morphine drip which I loathed and kept telling them I wasn't in pain so they would take me off it and let me go home. I probably had the rest of the week off from work (it was a while ago, can't remember exactly) and sure, it hurt, but I had panadeine forte and I don't remember it being too horrible. No one indicated I might have trouble eating/swallowing and I didn't. I imagine it would depend how much tissue they have to get rid of. In summary, it was one of the best things I ever did.
BTW this is the citation for the journal article I found:
Health Outcomes of Continuous Positive Airway Pressure versus Oral Appliance Treatment for Obstructive Sleep Apnea: A Randomized Controlled Trial
Phillips, Craig LView Profile; Grunstein, Ronald R; Darendeliler, M AliView Profile; Mihailidou, Anastasia S; Srinivasan, Vasantha K; et al. American Journal of Respiratory and Critical Care Medicine 187.8 (Apr 15, 2013): 879-87.
Memail me with your email address and I'll send you the article.
posted by Athanassiel at 8:24 PM on April 23, 2014 [2 favorites]
BTW this is the citation for the journal article I found:
Health Outcomes of Continuous Positive Airway Pressure versus Oral Appliance Treatment for Obstructive Sleep Apnea: A Randomized Controlled Trial
Phillips, Craig LView Profile; Grunstein, Ronald R; Darendeliler, M AliView Profile; Mihailidou, Anastasia S; Srinivasan, Vasantha K; et al. American Journal of Respiratory and Critical Care Medicine 187.8 (Apr 15, 2013): 879-87.
Memail me with your email address and I'll send you the article.
posted by Athanassiel at 8:24 PM on April 23, 2014 [2 favorites]
You were very clear you want non-cpap options. But did you cover all the bases? Nasal pillow (way less intrusive than a full face mask)? CPAP pillow? Those things are amazing. Did you give it enough time to get used to? When I was first starting, a physician friend suggested wearing it for before-bed reading, things like that, just to get used to it. It's been a miracle for me, so it makes me sad when people say it doesn't work for them, because I think there might be small adjustments to mask type/humidity/getting used to it that might make it an option for people who think it isn't.
posted by colin_l at 8:41 PM on April 23, 2014 [1 favorite]
posted by colin_l at 8:41 PM on April 23, 2014 [1 favorite]
Your question reminded me of an article i once read about a study that showed learning to play the didgeridoo can have positive effects for people suffering from sleep apnea.
http://www.bmj.com/content/332/7536/266
I have no personal experience with this remedy, and I present it only in the interest of giving you every possible opportunity to solve your problem. Hope you find something that works for you.
posted by novelgazer at 8:47 PM on April 23, 2014 [4 favorites]
http://www.bmj.com/content/332/7536/266
I have no personal experience with this remedy, and I present it only in the interest of giving you every possible opportunity to solve your problem. Hope you find something that works for you.
posted by novelgazer at 8:47 PM on April 23, 2014 [4 favorites]
I was diagnosed with mild apnea over a year ago and have been using a mandibular advancement device (mentioned above) acquired through my dentist. I haven't gone back for a second sleep study yet to confirm the improvement, but my snoring is almost completely gone and I'm crossing my fingers that this means my apnea is pretty much gone, too.
It's a custom-molded nylon mouth guard in two pieces connected by a replaceable plastic hinge. The way it works is that over a period of weeks to months, your dentist replaces the hinge with one that's just a millimeter shorter as you return for biweekly or monthly appointments. The idea is that as the hinge shortens, your lower jaw advances slightly, opening up your throat slightly at the same time. (The linked article says that it tightens the throat instead of opening it up, but I'm just quoting my dentist for now.)
The molding process was easy. I thought it would trigger my gag reflex, but I was fine throughout.
When I first started wearing it, it felt annoyingly tight around my teeth, but I adjusted. Some people have jaw pain in the morning, but that rarely happens to me. After the first night or so, I became pretty comfortable with it.
So if your insurance covers it, you might want to try it. But it usually isn't recommended for severe apnea. Talk with your doctor and dentist about your options.
Alternatively, you might want to try singing.
posted by rosebuddy at 9:00 PM on April 23, 2014 [1 favorite]
It's a custom-molded nylon mouth guard in two pieces connected by a replaceable plastic hinge. The way it works is that over a period of weeks to months, your dentist replaces the hinge with one that's just a millimeter shorter as you return for biweekly or monthly appointments. The idea is that as the hinge shortens, your lower jaw advances slightly, opening up your throat slightly at the same time. (The linked article says that it tightens the throat instead of opening it up, but I'm just quoting my dentist for now.)
The molding process was easy. I thought it would trigger my gag reflex, but I was fine throughout.
When I first started wearing it, it felt annoyingly tight around my teeth, but I adjusted. Some people have jaw pain in the morning, but that rarely happens to me. After the first night or so, I became pretty comfortable with it.
So if your insurance covers it, you might want to try it. But it usually isn't recommended for severe apnea. Talk with your doctor and dentist about your options.
Alternatively, you might want to try singing.
posted by rosebuddy at 9:00 PM on April 23, 2014 [1 favorite]
I was diagnosed with severe obstructive sleep apnea a couple of years ago.
...
FWIW, my ENT thinks that my obstruction is mainly caused by the soft tissue in the back of my throat, and I think he's right.
I think your apnea could be connected to the chronic, maddeningly itchy ear problem which, in a previous question, you said started more than three years ago, now.
If that itchiness did indeed stem from your inner ear, as one of the answers suggested, swelling there could very easily be pushing the soft tissue in the back of your throat into your airway.
If there is some chronic inflammatory process going on in your inner ear-- whether from infection or something else-- successfully dealing with it might take of your apnea.
posted by jamjam at 9:32 PM on April 23, 2014 [3 favorites]
...
FWIW, my ENT thinks that my obstruction is mainly caused by the soft tissue in the back of my throat, and I think he's right.
I think your apnea could be connected to the chronic, maddeningly itchy ear problem which, in a previous question, you said started more than three years ago, now.
If that itchiness did indeed stem from your inner ear, as one of the answers suggested, swelling there could very easily be pushing the soft tissue in the back of your throat into your airway.
If there is some chronic inflammatory process going on in your inner ear-- whether from infection or something else-- successfully dealing with it might take of your apnea.
posted by jamjam at 9:32 PM on April 23, 2014 [3 favorites]
My husband has this exact problem, minus the weight problem. He does use a CPAP, but has pursued many other therapies as well. He tried a dental appliance, but it didn't work for him. Something that worked rather well for him was doing certain throat exercises. I wish I could point you to a website or a youtube channel that featured demonstrations of these exercises, but to my knowledge (and my husband's), that doesn't exist.
He learned the exercises from an oro-facial myologist. He was quite methodical in his exploration of this method for reducing his sleep apnea. He did sleep tests before starting the exercises, and at 3 and 6 months. His AHI went down 15 points just with exercises. He was pretty diligent in doing the exercises, though. I think he did a lot of them in the car during his drive to work.
Also, Novelgazer is right; learning circular breathing like what's done to play the didgeridoo can help.
posted by cleverevans at 9:54 PM on April 23, 2014
He learned the exercises from an oro-facial myologist. He was quite methodical in his exploration of this method for reducing his sleep apnea. He did sleep tests before starting the exercises, and at 3 and 6 months. His AHI went down 15 points just with exercises. He was pretty diligent in doing the exercises, though. I think he did a lot of them in the car during his drive to work.
Also, Novelgazer is right; learning circular breathing like what's done to play the didgeridoo can help.
posted by cleverevans at 9:54 PM on April 23, 2014
It's just really hard to work out when you're exhausted all the time,
Working out is not going to do it. As an endocrinologist once told me, you would have to work in a coal mine to burn off enough calories to lose weight.
You have to eat fewer calories.
On the other hand, you also have to get *some* exercise. Try walking for 30 minutes a day.
I say this as someone who went from 136 kg in September to 107 kg right now. I didn't do anything special. I just walked, and a health emergency a couple of months ago forced me to change my diet.
I work in a deadline-driven environment, and I have kids, so basically I have no free time.
If I can do it, so can you.
posted by KokuRyu at 8:36 AM on April 24, 2014
Working out is not going to do it. As an endocrinologist once told me, you would have to work in a coal mine to burn off enough calories to lose weight.
You have to eat fewer calories.
On the other hand, you also have to get *some* exercise. Try walking for 30 minutes a day.
I say this as someone who went from 136 kg in September to 107 kg right now. I didn't do anything special. I just walked, and a health emergency a couple of months ago forced me to change my diet.
I work in a deadline-driven environment, and I have kids, so basically I have no free time.
If I can do it, so can you.
posted by KokuRyu at 8:36 AM on April 24, 2014
I had surgery a few years back and though it worked for a while, my snoring (and perhaps apnea) is back. I dread going the CPAP route. I am currently investigating Provent Sleep Apnea Therapy, which is a "discreet, disposable device is applied to the nostrils nightly and requires no mask or machine." I have no connection to this company, have not tried the product yet, and have one friend who tried it unsuccessfully. Yet, I hold out hope that it may work for me. It requires a prescription, so I am planning to discuss with my doctor shortly. It may be worth investigating as an option.
There is also a non-prescription version, Theravent, for snoring (not apnea). You may want to consider that version as a trial.
posted by flyingrock at 8:46 AM on April 24, 2014 [1 favorite]
There is also a non-prescription version, Theravent, for snoring (not apnea). You may want to consider that version as a trial.
posted by flyingrock at 8:46 AM on April 24, 2014 [1 favorite]
I have severe sleep apnea. I tried the CPAP machine with a full mask as part of a sleep study, and it suuuucked. Absolutely not an option for me. My doctor put me on an APAP machine instead (automatically-adjusting/variable pressure rather than continuous pressure) with a nasal pillow, and it's so much better. Have you tried an APAP machine, and/or a nasal pillow mask?
From what I understand of the surgical option, it's unnecessarily risky and invasive, and usually has to be re-done in a ~10-year timeframe anyway. A couple family members with sleep apnea have had success with the mouthpiece option.
I was in a similar position as you when it came to starting a working-out routine. But if you exercise really hard, it makes it a lot easier to sleep through the night. Even if you don't feel like you have the energy to start it, make yourself do it. Make sure you're eating properly and drink plenty of water beforehand, and it will make it much easier to do it. Seriously, make the time, you will be glad you did.
posted by hootenatty at 3:31 PM on April 24, 2014
From what I understand of the surgical option, it's unnecessarily risky and invasive, and usually has to be re-done in a ~10-year timeframe anyway. A couple family members with sleep apnea have had success with the mouthpiece option.
I was in a similar position as you when it came to starting a working-out routine. But if you exercise really hard, it makes it a lot easier to sleep through the night. Even if you don't feel like you have the energy to start it, make yourself do it. Make sure you're eating properly and drink plenty of water beforehand, and it will make it much easier to do it. Seriously, make the time, you will be glad you did.
posted by hootenatty at 3:31 PM on April 24, 2014
Do you sleep on your back, side, stomach? If you sleep on your back, you might breathe better on your side, or stomach. I know people who thought they could only sleep on their back, but with pillows, beanbag chairs, etc., have learned to sleep in more favorable positions. Something like a massage table with a hole for breathing might even allow you to sleep on your stomach.
posted by at at 11:51 PM on April 24, 2014
posted by at at 11:51 PM on April 24, 2014
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posted by fshgrl at 5:53 PM on April 23, 2014 [1 favorite]