CPAP failure
February 25, 2018 1:55 PM Subscribe
I think I'm a CPAP failure. I wore it religiously for 3 years. Finally I got sick of it.`
I stopped wearing it for about 6 months and I noticed no difference. I've started again because my new (not particularly liked) sleep specialist told me if I didn't wear it he's not going to say he approves for surgery if they ask (which is unlikely).
I never got any of those great results you're supposed to get. I'm just as tired in the morning and during the day. I still wake up with headaches. My mood is no better.
I've lost 150 pounds (gastric sleave) since starting and he upped the pressure on my machine. I've been wearing it for a couple days and no difference.
I told him that I felt no better and that I was tired in the mornings. He basically said, "Duh, that's because you're not using it". He won't listen. I asked about changing to a new doctor in the practice and was told no. It's not like I can go off on my own become I'm on Medicaid.
Are any of you CPAP failures? How do I get the doctor to listen when I see him in 3 months. I guess one option is just to stop going and returning the machine to the DME.
I stopped wearing it for about 6 months and I noticed no difference. I've started again because my new (not particularly liked) sleep specialist told me if I didn't wear it he's not going to say he approves for surgery if they ask (which is unlikely).
I never got any of those great results you're supposed to get. I'm just as tired in the morning and during the day. I still wake up with headaches. My mood is no better.
I've lost 150 pounds (gastric sleave) since starting and he upped the pressure on my machine. I've been wearing it for a couple days and no difference.
I told him that I felt no better and that I was tired in the mornings. He basically said, "Duh, that's because you're not using it". He won't listen. I asked about changing to a new doctor in the practice and was told no. It's not like I can go off on my own become I'm on Medicaid.
Are any of you CPAP failures? How do I get the doctor to listen when I see him in 3 months. I guess one option is just to stop going and returning the machine to the DME.
He increased your pressure after losing so much weight? That's a little odd.
I don't consider myself a CPAP failure, because I wore mine religiously for 10 years - until I lost 135 lbs after gastric bypass surgery and even the minimum pressure setting on my CPAP made it impossible for me to sleep (the pressure was blowing my mouth wide open in the night; I kept waking up in panic because my mouth was so dry I thought I was dying). But my symptoms of sleep apnea have resolved - I sleep through the night (as often as my bladder and cats allow), and wake up feeling good.
If you're still having all the symptoms of sleep apnea, I would ask the doctor to consider whether there's a problem with your treatment - maybe you're having bad mask leaks, or maybe your pressure has never been high enough, or maybe you need a different type of mask (there are so many kinds - nasal pillow, nose-only, full-face...). Maybe your machine is too loud. It's your doctor's job to figure out why the treatment isn't working, not just lecture you that you should continue it.
If he's unwilling to work with you, you have a right under Medicaid to file a grievance with either the state agency or the managed care company that administers your benefits.
posted by invincible summer at 2:15 PM on February 25, 2018 [4 favorites]
I don't consider myself a CPAP failure, because I wore mine religiously for 10 years - until I lost 135 lbs after gastric bypass surgery and even the minimum pressure setting on my CPAP made it impossible for me to sleep (the pressure was blowing my mouth wide open in the night; I kept waking up in panic because my mouth was so dry I thought I was dying). But my symptoms of sleep apnea have resolved - I sleep through the night (as often as my bladder and cats allow), and wake up feeling good.
If you're still having all the symptoms of sleep apnea, I would ask the doctor to consider whether there's a problem with your treatment - maybe you're having bad mask leaks, or maybe your pressure has never been high enough, or maybe you need a different type of mask (there are so many kinds - nasal pillow, nose-only, full-face...). Maybe your machine is too loud. It's your doctor's job to figure out why the treatment isn't working, not just lecture you that you should continue it.
If he's unwilling to work with you, you have a right under Medicaid to file a grievance with either the state agency or the managed care company that administers your benefits.
posted by invincible summer at 2:15 PM on February 25, 2018 [4 favorites]
Have you had a CPAP titration sleep study to make sure the CPAP is actually working for you, or do you just have an auto-titrating one at home? If you're really not feeling any benefit and you've been using it consistently, it would probably be reasonable to ask for an evaluation in the lab to make sure that everything is working the way it should, especially since losing so much weight can also change your facial contours and the settings you need. I am a little sympathetic to your doctor here because the absolute #1 reason for people's sleep apnea symptoms not improving is that they're not using their CPAP, but it does seem like you should be able to re-evaluate before 3 months if you're not having any improvement with consistent use.
There are other things that can cause fatigue, of course, and it's worth talking to your primary care doctor about those as well.
posted by The Elusive Architeuthis at 2:31 PM on February 25, 2018 [3 favorites]
There are other things that can cause fatigue, of course, and it's worth talking to your primary care doctor about those as well.
posted by The Elusive Architeuthis at 2:31 PM on February 25, 2018 [3 favorites]
If you're not able to switch doctors outright, can you meet with someone else as a second opinion?
I'd recommend keeping a daily log of CPAP use, how you feel, etc. and bringing that in whenever you see a doctor.
posted by trig at 2:38 PM on February 25, 2018 [1 favorite]
I'd recommend keeping a daily log of CPAP use, how you feel, etc. and bringing that in whenever you see a doctor.
posted by trig at 2:38 PM on February 25, 2018 [1 favorite]
If you can see an ENT, I'd suggest trying that (in addition to some of the other suggestions above). Nasal valve collapse can prevent CPAP from treating sleep apnea effectively.
More information on nasal valve collapse here.
posted by pie ninja at 3:46 PM on February 25, 2018
More information on nasal valve collapse here.
posted by pie ninja at 3:46 PM on February 25, 2018
I just got my CPAP and I'm learning a lot but it seems like if you have a decent enough machine, you can take the little SD card and read it and get a bunch of data like whether you're actually still having apneas and how often, etc. Maybe look into that (or a better machine if you need it.)
posted by callmejay at 4:56 PM on February 25, 2018 [2 favorites]
posted by callmejay at 4:56 PM on February 25, 2018 [2 favorites]
I'm not exactly a failure, because I do wear my CPAP every night. But I have not found it to be a miraculous and life-changing intervention the way my sleep specialist said it would be. I'm still tired in the mornings - I will never be a morning person; I have not lost stacks of weight; I still wake up with headaches sometimes (no, not hangovers). I'm pretty sure I still snore sometimes too, though my cat isn't telling.
For me, the main difference is that I am no longer uncontrollably tired. I was getting to the point where I would fall asleep in meetings and even once or twice caught myself in a microsleep when stopped at a red light while driving. That was terrifying, and thankfully has stopped with the CPAP use. That's the main reason why I keep using it.
The other thing that helps is having access to the data. Knowing that I used to stop breathing approximately 80 times an hour (yep, more than once a minute) and that using the CPAP has dropped my AHIs down to 2 or less is also positive reinforcement because it is a measurable difference.
What I would suggest the next time you see your doctor is to ask if you can have a follow-up sleep study done without the CPAP. If you have lost stacks of weight due to your gastric sleeve, it may be that your physiology has changed so that you either don't need the CPAP because you no longer have apnoeas (or are within the normal range) or, as others have suggested, that you are not using the right type of machine/mask combination. Sleep apnoea is very much affected by weight and other lifestyle factors, your doc is being unreasonable to insist that your treatment must remain exactly the same if other things have changed. Having the sleep study done and having actual data about your AHIs both without and then with the CPAP seems like it would also be really helpful both for you and your doctor.
posted by Athanassiel at 4:59 PM on February 25, 2018 [3 favorites]
For me, the main difference is that I am no longer uncontrollably tired. I was getting to the point where I would fall asleep in meetings and even once or twice caught myself in a microsleep when stopped at a red light while driving. That was terrifying, and thankfully has stopped with the CPAP use. That's the main reason why I keep using it.
The other thing that helps is having access to the data. Knowing that I used to stop breathing approximately 80 times an hour (yep, more than once a minute) and that using the CPAP has dropped my AHIs down to 2 or less is also positive reinforcement because it is a measurable difference.
What I would suggest the next time you see your doctor is to ask if you can have a follow-up sleep study done without the CPAP. If you have lost stacks of weight due to your gastric sleeve, it may be that your physiology has changed so that you either don't need the CPAP because you no longer have apnoeas (or are within the normal range) or, as others have suggested, that you are not using the right type of machine/mask combination. Sleep apnoea is very much affected by weight and other lifestyle factors, your doc is being unreasonable to insist that your treatment must remain exactly the same if other things have changed. Having the sleep study done and having actual data about your AHIs both without and then with the CPAP seems like it would also be really helpful both for you and your doctor.
posted by Athanassiel at 4:59 PM on February 25, 2018 [3 favorites]
My husband has sleep apnea, caused by the collapsing of throat muscles (confirmed by drug-induced sleep endoscopy) not by extra weight (never had any). He was a CPAP non-starter. His god awful doctor/technician put the CPAP on a "low" setting (ha ha ha ha) where the air was being blown into his mouth with such force that he had a hard time breathing - I tried it as well and could barely breathe, absolutely no way someone could sleep like that - and refused to adjust it since it was on a low setting already.
The good news is, he had some success with an oral appliance. First he had a custom appliance done by a specialized dentist at a cost of several thousand dollars (never covered by insurance) but it had metal parts that were cutting into his normally healthy gums to the point where he couldn't sleep or eat. So he got a cheap plastic appliance that you boil to customize to your mouth and it's been better than the professional one. His apnea is not gone by any means but it's improved and as his co-sleeper I can tell you that the snoring is significantly improved as well. He estimates that he sleeps about 50% better and I estimate the same for snoring reduction; also he started having dreams again sometimes, which I understand you can only have after deep sleep, so it appears to be working. If you can spare a $100 I highly recommend it as something to try.
He has also started practicing this digiredoo. It's been about two months and in his subjective opinion it helps mildly but noticeably on those nights when he does 20 minutes continuous play AND drinks no alcohol whatsoever.
posted by rada at 6:09 PM on February 25, 2018 [4 favorites]
The good news is, he had some success with an oral appliance. First he had a custom appliance done by a specialized dentist at a cost of several thousand dollars (never covered by insurance) but it had metal parts that were cutting into his normally healthy gums to the point where he couldn't sleep or eat. So he got a cheap plastic appliance that you boil to customize to your mouth and it's been better than the professional one. His apnea is not gone by any means but it's improved and as his co-sleeper I can tell you that the snoring is significantly improved as well. He estimates that he sleeps about 50% better and I estimate the same for snoring reduction; also he started having dreams again sometimes, which I understand you can only have after deep sleep, so it appears to be working. If you can spare a $100 I highly recommend it as something to try.
He has also started practicing this digiredoo. It's been about two months and in his subjective opinion it helps mildly but noticeably on those nights when he does 20 minutes continuous play AND drinks no alcohol whatsoever.
posted by rada at 6:09 PM on February 25, 2018 [4 favorites]
Does your CPAP reduce your AHI? How low is your AHI on nights that you use your CPAP? If it's still as high as it was when you had your sleep study, or close, then it's no wonder that you don't feel any different with it. You could try different masks or sleeping positions to see if those get your AHI down, or you could tweak the settings on your machine (e.g., disabling the EPR on my ResMed AirSense 10 machine helped a lot).
If your AHI is low with the CPAP (under 5) but you still don't feel well-rested, then you may have another health issue or sleep disorder to discuss with your doctor.
If you don't know how your CPAP affected your AHI, I would start by figuring that out. You can buy an SD card if your machine didn't come with one, and upload the data each morning to SleepyHead. When I did that, I discovered clusters of apneas every time I slept on my back, which is why my AHI stayed higher than I wanted it to. I'm training myself to sleep more on my side, and my AHI is trending downwards (below 4) - and I feel the difference.
Finally, if you need help interpreting your SleepyHead data and/or have other questions, I recommend the folks on Apnea Board. They're very friendly and helpful.
posted by southern_sky at 6:25 PM on February 25, 2018 [1 favorite]
If your AHI is low with the CPAP (under 5) but you still don't feel well-rested, then you may have another health issue or sleep disorder to discuss with your doctor.
If you don't know how your CPAP affected your AHI, I would start by figuring that out. You can buy an SD card if your machine didn't come with one, and upload the data each morning to SleepyHead. When I did that, I discovered clusters of apneas every time I slept on my back, which is why my AHI stayed higher than I wanted it to. I'm training myself to sleep more on my side, and my AHI is trending downwards (below 4) - and I feel the difference.
Finally, if you need help interpreting your SleepyHead data and/or have other questions, I recommend the folks on Apnea Board. They're very friendly and helpful.
posted by southern_sky at 6:25 PM on February 25, 2018 [1 favorite]
I had a diagnosis of sleep apnea, got a CPAP, and like you, never felt any better. Thing is, obstructive sleep apnea often co-occurs with other (neurological) sleep disorders. Is your doctor a neurologist and a board certified sleep specialist? In order to diagnose or rule out some of these sleep disorders you would need to take another overnight Polysomnagram, and a Multiple Sleep Latency Test. That's one where they keep you the following day and you take a series of naps.
Also, note that the two options for helping with daytime sleepiness are either 1) increase the quantity/quality of the nighttime sleep and/or 2) get a medication to keep you awake during the day. CPAP is just one strategy to get better sleep. Have you tried medication?
In order to get to the root of the problem, any doctor will ask you to go through some preliminary steps in addition to CPAP if you're still sleepy during the day. They'll look at your sleep patterns and sleep hygiene. So, in preparation for your next appointment, arm yourself with data to show them the problem. First, wear the CPAP every night and keep a sleep diary until you meet. How long you sleep, what time you get up and go to bed, whether your sleep is disturbed or not, how you feel in the morning, etc. Look for patterns. How long does it take to fall asleep? Are you worried about the next day? Do you wake up too early? Is your problem waking up during the night or falling asleep? Or both?
Also, prepare yourself to fill out the Epworth Sleepiness Scale. Don't exaggerate, but DO realize that the questions are asking if you *could* fall asleep in those situations, not *have* you actually fallen asleep.
If you have had any of the following symptoms, tell him: sleep paralysis, waking up often at night (even if you don't stay awake), dreaming/hallucinating while falling asleep or waking up and having a hard time figuring out if it was real. Do you ever (and this will sound weird) have a loss of muscle control when you feel a strong emotion? Like, do you ever drop things or have your knees give out, because something was funny or pissed you off? Do you doze off when you don't want to? Do you find yourself doing things on autopilot and kind of "come to" in the middle of a shower or a car ride?
SO, hang in there, be gentle with yourself, keep trying to figure it out, and if you can/need to, switch to a doctor that has the ability to address sleep disorders other than just apnea. Best of luck. I went 15 years before I got the right diagnosis. I'm not 100%, but it's way better.
posted by Stewriffic at 6:31 PM on February 25, 2018 [2 favorites]
Also, note that the two options for helping with daytime sleepiness are either 1) increase the quantity/quality of the nighttime sleep and/or 2) get a medication to keep you awake during the day. CPAP is just one strategy to get better sleep. Have you tried medication?
In order to get to the root of the problem, any doctor will ask you to go through some preliminary steps in addition to CPAP if you're still sleepy during the day. They'll look at your sleep patterns and sleep hygiene. So, in preparation for your next appointment, arm yourself with data to show them the problem. First, wear the CPAP every night and keep a sleep diary until you meet. How long you sleep, what time you get up and go to bed, whether your sleep is disturbed or not, how you feel in the morning, etc. Look for patterns. How long does it take to fall asleep? Are you worried about the next day? Do you wake up too early? Is your problem waking up during the night or falling asleep? Or both?
Also, prepare yourself to fill out the Epworth Sleepiness Scale. Don't exaggerate, but DO realize that the questions are asking if you *could* fall asleep in those situations, not *have* you actually fallen asleep.
If you have had any of the following symptoms, tell him: sleep paralysis, waking up often at night (even if you don't stay awake), dreaming/hallucinating while falling asleep or waking up and having a hard time figuring out if it was real. Do you ever (and this will sound weird) have a loss of muscle control when you feel a strong emotion? Like, do you ever drop things or have your knees give out, because something was funny or pissed you off? Do you doze off when you don't want to? Do you find yourself doing things on autopilot and kind of "come to" in the middle of a shower or a car ride?
SO, hang in there, be gentle with yourself, keep trying to figure it out, and if you can/need to, switch to a doctor that has the ability to address sleep disorders other than just apnea. Best of luck. I went 15 years before I got the right diagnosis. I'm not 100%, but it's way better.
posted by Stewriffic at 6:31 PM on February 25, 2018 [2 favorites]
have you tried different masks for cpap? i started with a nose cushion but it didnt help, now i use a full mask over nose and mouth and it made a big difference
posted by askmehow at 6:58 PM on February 25, 2018 [1 favorite]
posted by askmehow at 6:58 PM on February 25, 2018 [1 favorite]
In your shoes, I'd try pulling the data from the CPAP to see what kind of AHI it's seeing from a normal night of sleep.
There's a free and open program called Sleepyhead which can read data from a lot of machines; you can also locate the software released by the manufacturer to doctors with just a little work. Apneaboard.com probably has it.
I'm a success case for CPAP-- my AHI this week was 3, compared to 99 (every ~40 seconds) pre treatment. But like Athanassiel above, I've had to learn to temper my expectations. When I am tired, it's usually because I'm getting less than 6 hours. But believe me, I'm getting more out of my typical 7 hours than I used to get out of 12 hours. (I used to literally have 1 day in my weekends, sometimes, thanks to all the sleep I tried to catch up on.) I did have a positively euphoric experience of REM Rebound when I first got CPAP-- the night of my sleep study, in fact. Woke up at 11:30AM, feeling like a I'd never felt before. But that was temporary and ephemeral. Now I'm just glad that I don't need 3 alarm clocks. I didn't lose a lot of weight, but that's because my habits aren't conducive to weight loss; there's only so much good sleep can do.
I think you've gotten a good idea in switching doctors. You should explore other practices, if you can; you might get some traction with your current practice if you express a desire to leave them. And if not, then leave them.
posted by Sunburnt at 7:20 PM on February 25, 2018 [1 favorite]
There's a free and open program called Sleepyhead which can read data from a lot of machines; you can also locate the software released by the manufacturer to doctors with just a little work. Apneaboard.com probably has it.
I'm a success case for CPAP-- my AHI this week was 3, compared to 99 (every ~40 seconds) pre treatment. But like Athanassiel above, I've had to learn to temper my expectations. When I am tired, it's usually because I'm getting less than 6 hours. But believe me, I'm getting more out of my typical 7 hours than I used to get out of 12 hours. (I used to literally have 1 day in my weekends, sometimes, thanks to all the sleep I tried to catch up on.) I did have a positively euphoric experience of REM Rebound when I first got CPAP-- the night of my sleep study, in fact. Woke up at 11:30AM, feeling like a I'd never felt before. But that was temporary and ephemeral. Now I'm just glad that I don't need 3 alarm clocks. I didn't lose a lot of weight, but that's because my habits aren't conducive to weight loss; there's only so much good sleep can do.
I think you've gotten a good idea in switching doctors. You should explore other practices, if you can; you might get some traction with your current practice if you express a desire to leave them. And if not, then leave them.
posted by Sunburnt at 7:20 PM on February 25, 2018 [1 favorite]
I'm right at my three years and don't consider myself a CPAP failure, I'm a plain ol' CPAP quitter.
I swore I would do the machine at least three full years. I had to fight like heck to finish the last six months before I finally threw in the towel. I wake up a couple times a night without the mask--just exactly like I did WITH the bloody mask. I tested at a 'mild' apnea, and according to the recorder, the past year, I usually have <2>
Invincible summer has great ideas.
Don't ask this doc, tell him. "This is impacting my quality of life. I want you to resolve this, or give me a referral for a second opinion." He may not like it, but it's your health, and your money. If you're uncomfortable with asserting yourself, do you have someone that can advocate for you?
Sleep apnea is a real thing, and you don't want to risk the possibility of a stroke. But apnea treatment is horrible, and the machines are positively medieval. The whole setup is a major insurance scam IMO, and there won't be anyone looking for a better resolution because there is so much money to be made with this.
If the mouthpiece doesn't work for me, I'm willing to go back to the damn machine, squirrel around with different masks and different settings, do more tests, because I did have a stroke, and I don't want another.
posted by BlueHorse at 7:32 PM on February 25, 2018 [2 favorites]
I swore I would do the machine at least three full years. I had to fight like heck to finish the last six months before I finally threw in the towel. I wake up a couple times a night without the mask--just exactly like I did WITH the bloody mask. I tested at a 'mild' apnea, and according to the recorder, the past year, I usually have <2>
Invincible summer has great ideas.
Don't ask this doc, tell him. "This is impacting my quality of life. I want you to resolve this, or give me a referral for a second opinion." He may not like it, but it's your health, and your money. If you're uncomfortable with asserting yourself, do you have someone that can advocate for you?
Sleep apnea is a real thing, and you don't want to risk the possibility of a stroke. But apnea treatment is horrible, and the machines are positively medieval. The whole setup is a major insurance scam IMO, and there won't be anyone looking for a better resolution because there is so much money to be made with this.
If the mouthpiece doesn't work for me, I'm willing to go back to the damn machine, squirrel around with different masks and different settings, do more tests, because I did have a stroke, and I don't want another.
posted by BlueHorse at 7:32 PM on February 25, 2018 [2 favorites]
My insurance only pays for my CPAP machine on my behalf if I use it regularly. Otherwise, they bill me for it. This means I've now been paying $76.95 a month not to use a CPAP. I had gastric sleeve surgery in August. They told me when my BMI got below 30, I would likely not need it anymore. My BMI is in the 28 range. I was supposed to wait until the end of March to see if they could get rid of it for me, but it got to the point where it felt like it was going to tear my face off, even after they reduced the pressure once. I begged and got an appointment for tomorrow.
I will report back if I manage to find a line that results in being able to talk myself out of the damned CPAP.
posted by DirtyOldTown at 1:09 PM on February 26, 2018
I will report back if I manage to find a line that results in being able to talk myself out of the damned CPAP.
posted by DirtyOldTown at 1:09 PM on February 26, 2018
Response by poster: Great advice. Thanks.
I'm on my second mask. I can't do nasal because I can't keep my mouoth shut when I'm asleep. Getting another new mask is something that's a non-starter. This last one I had to pay for out of pocket and I can't afford another financial hit like that. I get one mask per year with my insurance.
I see him in three months and I'll ask him about another sleep study. I'm reluctant to do that because next week I'm having a gastric bypass.
This new pressure isn't working for me. I feel like I can't get a breath out. It's constantly blowing air at me.
It looks like I'm about 10 on the sleepiness scale. That's higher than ever. I fill that out every time I see the sleep specialist.
I'll look into the sleepy head software. I'll have to dig out my windows laptop because it seems like I'd need to build it from source for Linux. I'm not too keen on doing that even though I know how to do it. I'll also look at the software doctors use. There's a desktop app from the manufacture but it didn't tell me much.
Again, thanks. I talked about it with my therapist today and she thinks it's a good plan to give it the three months and then reevaluate.
posted by kathrynm at 1:13 PM on February 26, 2018
I'm on my second mask. I can't do nasal because I can't keep my mouoth shut when I'm asleep. Getting another new mask is something that's a non-starter. This last one I had to pay for out of pocket and I can't afford another financial hit like that. I get one mask per year with my insurance.
I see him in three months and I'll ask him about another sleep study. I'm reluctant to do that because next week I'm having a gastric bypass.
This new pressure isn't working for me. I feel like I can't get a breath out. It's constantly blowing air at me.
It looks like I'm about 10 on the sleepiness scale. That's higher than ever. I fill that out every time I see the sleep specialist.
I'll look into the sleepy head software. I'll have to dig out my windows laptop because it seems like I'd need to build it from source for Linux. I'm not too keen on doing that even though I know how to do it. I'll also look at the software doctors use. There's a desktop app from the manufacture but it didn't tell me much.
Again, thanks. I talked about it with my therapist today and she thinks it's a good plan to give it the three months and then reevaluate.
posted by kathrynm at 1:13 PM on February 26, 2018
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Best of luck to you!
posted by GregorWill at 2:15 PM on February 25, 2018 [6 favorites]