Has anyone had success treating sleep apnea without a CPAP (or surgery)?
July 6, 2008 9:00 PM Subscribe
Has anyone successfully used non-surgical alternatives to CPAP therapy (oral appliances, special pillows, etc) for treatment of mild-to-moderate sleep apnea, or been able to stop CPAP therapy after losing weight?
(Note: Surgery is not an option, I do not have severe apnea, and my doctor even told me it wasn't worth considering.)
I was recently diagnosed with mild-to-moderate sleep apnea after a sleep study. It had actually surprised me, as in the 6 months between when the study was ordered and when it actually happened, I had lost ~25 lbs and according to my husband hadn't been snoring at all anymore (I used to snore like a "chainsaw" apparently). Anyway...
I was given a CPAP machine along with a nasal pillows-style mask. I've tried to use it several times over the past 3 weeks, and I loathe it. I feel like I'm suffocating no matter whether the machine is on, off, or doing it's "ramping up" thing. I've forced myself to keep it on for hours, and I've fallen asleep with it a couple times, but I always wake up within an hour, and always with a tremendous headache. I'm at the point where just thinking about trying to sleep with it again makes me feel like crying.
I am planning to ask about getting a nose & mouth mask to see if it's the fact that I can't breathe through my mouth that makes me feel like I'm suffocating...but in the meantime, I'm just feeling VERY discouraged and miserable about the whole thing. I don't even have severe apnea ... I know there are some alternatives!
But I am having trouble finding first-hand accounts of people successfully using them. Also, I am having trouble finding accounts of people ever stopping CPAP therapy after starting it. Even people who have lost a lot of weight. And I find this really discouraging...
Has anyone here used (or known someone who used) alternatives to CPAP for sleep apnea with success? Has anyone ever been able to stop using CPAP therapy after losing weight (or anything else)?
(Note: Surgery is not an option, I do not have severe apnea, and my doctor even told me it wasn't worth considering.)
I was recently diagnosed with mild-to-moderate sleep apnea after a sleep study. It had actually surprised me, as in the 6 months between when the study was ordered and when it actually happened, I had lost ~25 lbs and according to my husband hadn't been snoring at all anymore (I used to snore like a "chainsaw" apparently). Anyway...
I was given a CPAP machine along with a nasal pillows-style mask. I've tried to use it several times over the past 3 weeks, and I loathe it. I feel like I'm suffocating no matter whether the machine is on, off, or doing it's "ramping up" thing. I've forced myself to keep it on for hours, and I've fallen asleep with it a couple times, but I always wake up within an hour, and always with a tremendous headache. I'm at the point where just thinking about trying to sleep with it again makes me feel like crying.
I am planning to ask about getting a nose & mouth mask to see if it's the fact that I can't breathe through my mouth that makes me feel like I'm suffocating...but in the meantime, I'm just feeling VERY discouraged and miserable about the whole thing. I don't even have severe apnea ... I know there are some alternatives!
But I am having trouble finding first-hand accounts of people successfully using them. Also, I am having trouble finding accounts of people ever stopping CPAP therapy after starting it. Even people who have lost a lot of weight. And I find this really discouraging...
Has anyone here used (or known someone who used) alternatives to CPAP for sleep apnea with success? Has anyone ever been able to stop using CPAP therapy after losing weight (or anything else)?
I have severe sleep apnea (my initial prescription was for 19" H20, I use 17" H20 presently), and I have been using a CPAP since 1999. About 3 months after I started CPAP therapy, I had lost about 30 pounds, but still needed to use the CPAP. About 2 years later, I weighed 70 pounds less than I weighed when I started therapy, but had to continue to use my CPAP. I'm back up to the same weight I was when I started CPAP. So in my experience, losing weight did not alleviate my need for CPAP therapy.
When I was considering surgery and alternate treatments, I found this forum on cpaptalk.com helpful.
I'd like to address a couple things that might help. I'm not your doctor or your mother, but I am a Fat Guy with sleep apnea, and I'd like to see you get a good night's sleep.
1. Don't get discouraged, you've only used CPAP for 3 weeks! When I first got my unit, I could only sleep 4 hours at a time, and after 4 hours I wanted to rip my nasal mask off and hurl it across the room. It does take some time to get used to CPAP. I recently bought two used CPAP units that had 30 hours and 80 hours of use on them to replace my CPAP that had 8000+ hours on it. You haven't used your CPAP enough, stick with it, don't give up! Those people who sold their units with 30 and 80 hours on them didn't take enough time to get used to CPAP therapy.
2. I was a mouth breather, a lot of people on CPAP were. I think you will get used to breathing through your nose. Here's a link for you that addresses difficulty breathing through your nose. (I use a nasal mask myself, and I couldn't see switching. My brother started his CPAP therapy with a full face mask, and couldn't stand it, and went for nasal pillows.)
3. I know you said you feel like you're suffocating no matter what state the machine is in, but have you considered not using the ramp feature? I feel like I'm suffocating when the pressure on my machine is below my prescription level. Also, while you may feel like you are suffocating, I'm sure you realize that you have a machine pumping air into your nose! When you think you are suffocating, remember that and try and psych yourself out of that suffocating feeling.
4. You may not have *severe* sleep apnea, but you have sleep apnea, which means of course you stop breathing in your sleep. That's bad, use your CPAP machine.
I realize that my sleep apena is more severe that you sleep apnea is, but I hope this helps. If you ever want to talk CPAP, you can email me.
posted by Fat Guy at 10:16 PM on July 6, 2008
When I was considering surgery and alternate treatments, I found this forum on cpaptalk.com helpful.
I'd like to address a couple things that might help. I'm not your doctor or your mother, but I am a Fat Guy with sleep apnea, and I'd like to see you get a good night's sleep.
1. Don't get discouraged, you've only used CPAP for 3 weeks! When I first got my unit, I could only sleep 4 hours at a time, and after 4 hours I wanted to rip my nasal mask off and hurl it across the room. It does take some time to get used to CPAP. I recently bought two used CPAP units that had 30 hours and 80 hours of use on them to replace my CPAP that had 8000+ hours on it. You haven't used your CPAP enough, stick with it, don't give up! Those people who sold their units with 30 and 80 hours on them didn't take enough time to get used to CPAP therapy.
2. I was a mouth breather, a lot of people on CPAP were. I think you will get used to breathing through your nose. Here's a link for you that addresses difficulty breathing through your nose. (I use a nasal mask myself, and I couldn't see switching. My brother started his CPAP therapy with a full face mask, and couldn't stand it, and went for nasal pillows.)
3. I know you said you feel like you're suffocating no matter what state the machine is in, but have you considered not using the ramp feature? I feel like I'm suffocating when the pressure on my machine is below my prescription level. Also, while you may feel like you are suffocating, I'm sure you realize that you have a machine pumping air into your nose! When you think you are suffocating, remember that and try and psych yourself out of that suffocating feeling.
4. You may not have *severe* sleep apnea, but you have sleep apnea, which means of course you stop breathing in your sleep. That's bad, use your CPAP machine.
I realize that my sleep apena is more severe that you sleep apnea is, but I hope this helps. If you ever want to talk CPAP, you can email me.
posted by Fat Guy at 10:16 PM on July 6, 2008
Response by poster: Thanks for the responses so far. :-)
With regards to just getting used to breathing through my nose -- I don't think that's possible. I usually breathe through my nose, but I have terrible allergies and while they are mostly under control, I don't always feel like I get enough air in through my nose when my allergies are bad and I'm all post-nasal-drippy and have weird shit going on in my sinuses.
Also...I know I haven't tried it for long, but I really don't understand how it's expected for someone to go weeks or months with crappy sleep while they get used to the thing. I mean...I can't function after one night of shitty sleep, let alone multiple nights. I mean, the timing really sucks as I just started a new job, and I simply cannot afford to go into work exhausted and miserable because I was playing games with the damn thing.
Honestly, my sleep has only turned bad since getting the machine because if I'm not trying it and feeling crappy because of the headache it gives me, I'm stressed out and miserable because I keep beating myself up about why I'm not using it. I haven't had such anxiety-related insomnia in ages.
posted by tastybrains at 10:51 PM on July 6, 2008
With regards to just getting used to breathing through my nose -- I don't think that's possible. I usually breathe through my nose, but I have terrible allergies and while they are mostly under control, I don't always feel like I get enough air in through my nose when my allergies are bad and I'm all post-nasal-drippy and have weird shit going on in my sinuses.
Also...I know I haven't tried it for long, but I really don't understand how it's expected for someone to go weeks or months with crappy sleep while they get used to the thing. I mean...I can't function after one night of shitty sleep, let alone multiple nights. I mean, the timing really sucks as I just started a new job, and I simply cannot afford to go into work exhausted and miserable because I was playing games with the damn thing.
Honestly, my sleep has only turned bad since getting the machine because if I'm not trying it and feeling crappy because of the headache it gives me, I'm stressed out and miserable because I keep beating myself up about why I'm not using it. I haven't had such anxiety-related insomnia in ages.
posted by tastybrains at 10:51 PM on July 6, 2008
I'm sorry I can't provide advice about your situation but I implore you to stick with the CPAP. A close friend was diagnosed with apnea 2-3 years ago but (like you) hated the mask and never wore it. Two weeks ago he had a stroke. It was a small one, he was VERY lucky, but his doctors said his blood pressure was the cause of the bleed. High blood pressure and sleep apnea go hand in hand so please, please, do whatever it takes to adapt to the CPAP. I wish you good luck and good health.
posted by killy willy at 10:52 PM on July 6, 2008
posted by killy willy at 10:52 PM on July 6, 2008
I snore and dream about holding my breath for some reason and wake up gasping and all that. But didn't do so during a sleep study, so I must be fine. The doctor said so.
Then I started sleeping on my stomach. Somewhat less comfortable, but way better sleep. I just pile up the pillows and slump over them.
If you haven't tried other sleeping positions, it might be worth a whack. It's cheaper than CPAP, and less hassle to boot.
posted by spacewrench at 10:54 PM on July 6, 2008
Then I started sleeping on my stomach. Somewhat less comfortable, but way better sleep. I just pile up the pillows and slump over them.
If you haven't tried other sleeping positions, it might be worth a whack. It's cheaper than CPAP, and less hassle to boot.
posted by spacewrench at 10:54 PM on July 6, 2008
At first I couldn't use a CPAP unless I had a Breathe Right strip on and took Claritin before going to bed. I eventually got used to it. Do your CPAP have a humidifier with a heater? The only time I usually get headaches is if the air is to cold or dry, usually in the summer when the AC is on more.
As for losing weight, I had lost 40 lbs in three weeks a few years ago from food poisoning. I didn't need the CPAP, stopped snoring, and slept much better for about 6 months. After getting back to a "healthier" weight I started needing the CPAP more and more.
I might suggest addressing your sinus issues, continuing your weight loss, and checking back with your doctor before dropping the CPAP use entirely. Just because your not snoring doesn't mean your breathing all the time.
posted by Yorrick at 11:44 PM on July 6, 2008
As for losing weight, I had lost 40 lbs in three weeks a few years ago from food poisoning. I didn't need the CPAP, stopped snoring, and slept much better for about 6 months. After getting back to a "healthier" weight I started needing the CPAP more and more.
I might suggest addressing your sinus issues, continuing your weight loss, and checking back with your doctor before dropping the CPAP use entirely. Just because your not snoring doesn't mean your breathing all the time.
posted by Yorrick at 11:44 PM on July 6, 2008
My dad lost ~80 pounds about a year after starting CPAP and stopped needing to use the CPAP. The "suffocating" feeling definitely heavily influenced his weight loss.
posted by alcopop at 1:48 AM on July 7, 2008
posted by alcopop at 1:48 AM on July 7, 2008
Hey, you know Tracy's sister in Montreal runs a sleep apnea clinic, maybe you could get some suggestions from her. T could fwd your questions, IM her and let her know.
posted by zarah at 2:51 AM on July 7, 2008
posted by zarah at 2:51 AM on July 7, 2008
Best answer: If you have the "ramping up" function turned on, turn it off. I've found that if the ramping option is turned on, I feel like I can't breathe until it gets up to full pressure. Full pressure right away has never bothered me.
posted by dforemsky at 3:56 AM on July 7, 2008
posted by dforemsky at 3:56 AM on July 7, 2008
How much alcohol do you drink and when? (drinking wine after 6pm gives me sleep apnea)
posted by cda at 4:31 AM on July 7, 2008
posted by cda at 4:31 AM on July 7, 2008
Best answer: Another vote for giving the CPAP a chance. It took me a month to adapt but my sleep got so much better I didn't mind the annoyances of the machine. I never used the ramp function, I preferred to have the full pressure right away.
Have you thought about using Ambien while you adjust to the new regimen?
I recently lost some weight; after dropping about 50 pounds I don't use the CPAP anymore.
posted by Wet Spot at 5:27 AM on July 7, 2008
Have you thought about using Ambien while you adjust to the new regimen?
I recently lost some weight; after dropping about 50 pounds I don't use the CPAP anymore.
posted by Wet Spot at 5:27 AM on July 7, 2008
I know of at least one guy who lost 100 lbs, and didn't need the CPAP, and pretty much whipped diabetes too.
posted by unrepentanthippie at 5:52 AM on July 7, 2008
posted by unrepentanthippie at 5:52 AM on July 7, 2008
My wife's dad used to use CPAP, and after he lost a lot of weight (had gastric bypass), he was able to stop using it.
If allergies are a contributing factor, you should address them directly. If Claritin alone isn't doing it, look into using a neti pot, and getting allergy shots. Allergy shots aren't a quick fix - they take months to kick in, and at the beginning, you have to go weekly.
I have awful allergies, but now I only very rarely need to take a Claritin - and this in the midst of one of the worst allergy seasons on record. It's made a huge difference to my quality of life.
posted by canine epigram at 6:07 AM on July 7, 2008
If allergies are a contributing factor, you should address them directly. If Claritin alone isn't doing it, look into using a neti pot, and getting allergy shots. Allergy shots aren't a quick fix - they take months to kick in, and at the beginning, you have to go weekly.
I have awful allergies, but now I only very rarely need to take a Claritin - and this in the midst of one of the worst allergy seasons on record. It's made a huge difference to my quality of life.
posted by canine epigram at 6:07 AM on July 7, 2008
spacewrench wrote: I snore and dream about holding my breath for some reason and wake up gasping and all that. But didn't do so during a sleep study, so I must be fine. The doctor said so.I did my sleep study a couple of weeks ago and am still waiting for the results (but I'm pretty sure I have at least mild sleep apnoea). I find that when I sleep on my stomach the dreams of drowning, choking, holding my breath etc go away, and I don't wake up choking. The way I do it is to put my head next to the pillow and sort of leaning on it, so my neck is getting a little bit of support and my face is more or less pointing directly down. This seems to help (I'm also pretty skinny, so this might not work so well for everyone).
Then I started sleeping on my stomach. Somewhat less comfortable, but way better sleep. I just pile up the pillows and slump over them.
If you haven't tried other sleeping positions, it might be worth a whack. It's cheaper than CPAP, and less hassle to boot.
I don't have much of a problem with rolling onto my back, although I do it sometimes. If it happened too often I'd fold a couple of tennis balls into the back of a T-shirt and wear it to bed.
posted by A Thousand Baited Hooks at 7:32 AM on July 7, 2008
Best answer: Doctors love to push the CPAP as first line merely because it works, ignoring the discomfort and other issues. You might want to try some alternatives first. A boil and bite mouthpiece which holds your jaw back works for many people. You can buy one over the counter or go to a dentist who specializes in these things to get a professional fit for a more complicated one. Inhaled steroids (Flovent) to fight allergies help many people. It may seem weird, but this pillow actually works. Sleeping on your side with your lower arm pointing up and away from you seems to open the breathing passages.
posted by caddis at 7:37 AM on July 7, 2008 [1 favorite]
posted by caddis at 7:37 AM on July 7, 2008 [1 favorite]
First of all, spend some time looking at the two main forums for folks with apnea (it's like AskMe for "hoseheads!"):
www.cpaptalk.com
www.apneasupport.org
Other notes I can offer off-hand:
--Your mask absolutely matters, and nasal pillow masks--while perfect for those who feel clausterphobic with a larger mask--are not the best for everyone. Plus, if you're at all leaking air out your mouth, you're probably not getting your full pressure delivered anyway. I'm a fan of the Hybrid mask; I also like the Quattro as a full-face mask. If you're feeling sticker shock looking at those prices, keep in mind that I was able to buy them (new) for around $60 at cpapauction.com.
--What's your pressure? If it's in the single digits, your ramp-up may be making you feel like you're suffocating, as mentioned by a previous poster. Turn it off.
--Sadly, I wouldn't pin too much hope on weight loss either. See this thread here.
PM me if you want, but I can't say enough for the forums listed above.
posted by availablelight at 10:28 AM on July 7, 2008
www.cpaptalk.com
www.apneasupport.org
Other notes I can offer off-hand:
--Your mask absolutely matters, and nasal pillow masks--while perfect for those who feel clausterphobic with a larger mask--are not the best for everyone. Plus, if you're at all leaking air out your mouth, you're probably not getting your full pressure delivered anyway. I'm a fan of the Hybrid mask; I also like the Quattro as a full-face mask. If you're feeling sticker shock looking at those prices, keep in mind that I was able to buy them (new) for around $60 at cpapauction.com.
--What's your pressure? If it's in the single digits, your ramp-up may be making you feel like you're suffocating, as mentioned by a previous poster. Turn it off.
--Sadly, I wouldn't pin too much hope on weight loss either. See this thread here.
PM me if you want, but I can't say enough for the forums listed above.
posted by availablelight at 10:28 AM on July 7, 2008
[whoops, PM= Personal Message= MeMail, on this site. But you get the idea. Feel free to drop me a line.]
posted by availablelight at 10:33 AM on July 7, 2008
posted by availablelight at 10:33 AM on July 7, 2008
Response by poster: There are a lot of great answers, thanks everyone. I know I had a lot of concerns wrapped up in my question.
I am not completely giving up on the CPAP...I am definitely going to try both the breathe right strips and turning off the ramping function, and maybe that will help.
To address some other concerns people mentioned:
- I already have a pretty effective routine for my allergies - saline nasal rinses at least once a day (twice if it's high pollen), Flonase at bedtime, and Claritin at bedtime. My allergies are actually a LOT better than they used to be ... I used to have the worst chronic post nasal drip ever. But it's not perfect, and I do feel that's contributing to the suffocating feeling.
- I don't drink alcohol regularly anymore, not even on a weekly basis. I know not to drink alcohol within 4-5 hours of bedtime.
- Someone suggested Ambien ... I would like to try this, but it was my impression that if you have sleep apnea you shouldn't take any sleeping pills as that can make things worse. I'm going to ask my doctor if it would be ok to try, though.
- I'm going to try to see my doctor (or maybe get a different one for a second opinion as mine barely gave me any info at all on any of this crap) and talk about alternative. He had mentioned oral appliances in passing, and I'd like his opinion on pillows like the Sona pillow.
posted by tastybrains at 6:06 PM on July 7, 2008
I am not completely giving up on the CPAP...I am definitely going to try both the breathe right strips and turning off the ramping function, and maybe that will help.
To address some other concerns people mentioned:
- I already have a pretty effective routine for my allergies - saline nasal rinses at least once a day (twice if it's high pollen), Flonase at bedtime, and Claritin at bedtime. My allergies are actually a LOT better than they used to be ... I used to have the worst chronic post nasal drip ever. But it's not perfect, and I do feel that's contributing to the suffocating feeling.
- I don't drink alcohol regularly anymore, not even on a weekly basis. I know not to drink alcohol within 4-5 hours of bedtime.
- Someone suggested Ambien ... I would like to try this, but it was my impression that if you have sleep apnea you shouldn't take any sleeping pills as that can make things worse. I'm going to ask my doctor if it would be ok to try, though.
- I'm going to try to see my doctor (or maybe get a different one for a second opinion as mine barely gave me any info at all on any of this crap) and talk about alternative. He had mentioned oral appliances in passing, and I'd like his opinion on pillows like the Sona pillow.
posted by tastybrains at 6:06 PM on July 7, 2008
Response by poster: Also, my pressure varies (it's an auto CPAP) from 5-12.
posted by tastybrains at 6:09 PM on July 7, 2008
posted by tastybrains at 6:09 PM on July 7, 2008
Anything below 7 can make some folks feel like they're suffocating in the mask, FYI. An additional idea would be to try raising the bottom level to 7, or run it as a straight CPAP (not auto)--your doc would know what number to try.
If you can get a dental appliance to work (without causing other issues with bite or alignment)--god bless ya, that's awesome. There's a forum about dental appliances for apnea here:
www.talkaboutsleep.com
posted by availablelight at 6:37 PM on July 7, 2008
If you can get a dental appliance to work (without causing other issues with bite or alignment)--god bless ya, that's awesome. There's a forum about dental appliances for apnea here:
www.talkaboutsleep.com
posted by availablelight at 6:37 PM on July 7, 2008
Best answer: I also have non-severe apnea, but neither my doctor nor I thought CPAP was a great idea for me - I don't want to become dependent on it, for one thing, and I'd really like to be able to travel without schlepping it etc.
So far the regimen that works for me is:
- No alcohol or caffeine within 3-4 hours before bed
- No food within an hour or two of bed
- Two squirts of Nasonex in each nostril to shrink the nasal tissues
- Slap on a BreatheRight strip, and
- Sleep on my side on a Memory Foam contoured pillow.
It seems to work pretty well so far.
posted by AngerBoy at 7:34 PM on July 7, 2008 [1 favorite]
So far the regimen that works for me is:
- No alcohol or caffeine within 3-4 hours before bed
- No food within an hour or two of bed
- Two squirts of Nasonex in each nostril to shrink the nasal tissues
- Slap on a BreatheRight strip, and
- Sleep on my side on a Memory Foam contoured pillow.
It seems to work pretty well so far.
posted by AngerBoy at 7:34 PM on July 7, 2008 [1 favorite]
Nasonex has made a big difference for me, especially since I don't seem to tolerate CPAP well. I'm now functioning, whereas I had a few months after being diagnosed with severe apnea when I could hardly work at all.
posted by lukemeister at 10:32 PM on July 7, 2008
posted by lukemeister at 10:32 PM on July 7, 2008
Don't have too much to add to what's been said. I think that the Ambien is worth trying -- I use it when I can't get comfortable with the CPAP. It probably does make the Apnea worse, but if the mask stays on, it's a win, IMHO.
I find the sinus rinse really helpful before bed.
Caffeine is out.
posted by prophetsearcher at 7:03 AM on July 8, 2008
I find the sinus rinse really helpful before bed.
Caffeine is out.
posted by prophetsearcher at 7:03 AM on July 8, 2008
Keep at it. It takes a good while to get used to CPAP and to find a mask and sleep position that works for you. It took me months before I found the right humidity setting, pressure setting, mask, etc, but now I have no problems getting a good night's sleep. Also, things may change over time and you may need to make adjustments. In the winter, I need much more humidity than in the summer. In fact, these days it's so damp in my apartment that I get rainout in my mask and I don't even use the humidifier.
Good luck with everything. It's hard to get used to, but so worth it.
posted by linuxgrl at 7:18 PM on July 8, 2008
Good luck with everything. It's hard to get used to, but so worth it.
posted by linuxgrl at 7:18 PM on July 8, 2008
Response by poster: Just thought I'd update ... after talking with the pulmonologist, who agreed that my sleep apnea wasn't severe to the point of me NEEDING the CPAP in order to not die, I returned the CPAP, lost 40 lbs, don't snore anymore, and feel great. I'd go back for a follow-up sleep study to confirm I no longer have sleep apnea, but my pulmonologist didn't really think it was worthwhile since I am sleeping well, feel fine, and have good blood pressure.
posted by tastybrains at 2:22 PM on March 31, 2009 [1 favorite]
posted by tastybrains at 2:22 PM on March 31, 2009 [1 favorite]
Thanks for the update, and I'm glad to hear things are going so well.
posted by unrepentanthippie at 9:36 PM on April 7, 2009
posted by unrepentanthippie at 9:36 PM on April 7, 2009
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I also personally know a girl who lost 50lbs and was able to go off the machine completely and she became sleep apnea free. It depends on what type of sleep apnea you have.
posted by fluffy battle kitten at 10:03 PM on July 6, 2008