Two steps backwards -LONG TERM UPDATE pg2

Sorry about the fact that I need to whine.

But last night was really rough:

Went to bed just fine and relatively early for me around midnight. Had a bit of trouble falling asleep, but nothing out of the ordinary.

Then at 1:30AM I woke up with a monstrous stomach ache and feeling like the old stuffed goose again. I also felt exhausted when I woke up. Had to take the mask off and wake up my husband because I felt so uncomfortable. Could NOT get comfortable laying down. My husband said my stomach felt like a hard, inflated balloon. It hurt, but did NOT hurt like indigestion/heartburn does. It also hurt to breathe because my *lower* throat (below the adam's apple) felt really dry and scratchy. I sat in bed for two solid hours wide awake because I could not lie down at all. At one point I tried putting the mask back on, but within 5 minutes the stomach was feeling really, really bad. So I took the mask off again and continued to sit straight up in bed (and NOT sleep because the pain was not allowing me to get sleepy.) At another point, I decided to take my husband's advice and just try to get some sleep without the mask. Didn't work since as soon as I lay down, the stomach started hurting really bad again, so I sat back up and spent more time sitting straight up and NOT sleeping. Some time between 3:30 and 4:00 AM, I finally started to get sleepy. I reluctantly put the mask back on (after checking the LCD data) and fell asleep until 8:30. Did not wake up feeling rested at all.

Now, the data was good for the night: During the first ninety minutes, the S9 showed and AHI of 0.0 and a 95% pressure of something like 6.**. So I don't think it was an apneic event that woke me up---it was aerophagia. In the morning, the AHI was 0.1 (which means ONE event all night, given the total time I had the mask on) and a 95% pressure of something like 7.8.

I've been in touch with the PA again. No new suggestions on what to do, except that if my stomach is still feeling hard and full of air to try sleeping sans mask tonight and then watch the problem carefully until my next follow up with her on 11/30. We also talked about how much *more* fatigued I am and how much *more* sleepy I am since starting CPAP. She also decided to order a full set of non-fasting blood work to see if anything turns up that might explain why I am feeling so much worse on CPAP. She also said that some people take months to start to feel better. And she mentioned that if stuff doesn't get better after a certain point, that I may need to talk to the doctor about trying an oral appliance to see if it might work well enough.

I *want* to make this therapy work, but I'm super discouraged at this point in spite of my good AHI numbers. All I want is to feel functional again---the way I was before the first sleep study was done.

But I'd settle for having some kind of an idea of what the OUTSIDE time frame for how long it might be, and so far the PA hasn't been willing to speculate. I'm beginning to think that I might NEVER feel better while using CPAP in spite of my really good AHIs, which usually stay below 1.0 and, except for two nights out of the last 35 have been below 2.0.

Words of encouragement are needed.

Suggestions for dealing with the aerophagia that do NOT include "sleep on your back" are also welcome. My back despises it when I sleep on it, and I don't want to add a serious back ache to the woes I'm already dealing with.

But please don't tell me all the consequences of untreated apnea: I know them. That's why I want to make this therapy work.

And please don't tell me that I had symptoms I didn't know about before starting CPAP: I did NOT fall asleep during the day before and now I'm terrified I'll fall asleep while driving.

I'm sorry that you had such a bad night.

Is there any chance you had a reflux episode?? I wake with similar symptoms when I've had a reflux episode in my sleep. Some people find that the aerophagia from CPAP can trigger reflux if they didn't have symptoms before or make reflux worse if they did have GERD already.

One way to check for this (if you don't have any contraindications) is to try an over the counter reflux medication (i.e. Zantac or Prilosec OTC) and just see if it helps at all.

oh darn, sorry you had such a rotten night...

I used to get that air in my stomach too, but not anymore..

it seems if I can curl up with three pillows and bend my neck in a certain way forward, that pretty much stops it..

I can do this on my side or tummy.. I think when your neck is too straight, its much easier for the air to go into your tummy..


so try curling up on your side and bend your neck forward like a kitty curling up in a ball and I bet that will help..


as for feeling worse on cpap.. Im your twin.. its been eight months for me, and like you, I was never tired before cpap..

I think its harder for insomniacs and light sleepers to deal with this machine... but any, try curling up like a cat, it worked for me..

I've struggled with aerophagia too. The things that seemed to work for me are:

--cpap mode of 11.8, rather than apap with a narrow range (11-12)
--EPR of 2
--what I eat/drink: no caffeine (coffee or tea), no chocolate, no citrus fruits or juice, no carbonated beverages. Minimize anything fried or spicey, or eat it for lunch instead of dinner.
--a very light dinner, a minimum of 3 hours before bedtime. Occasionally, when that's not possible, I take a Tagamet before eating.
--drink lots of water during the day, to be sure I'm hydrated
--only drink water or herbal tea, 3 hours before bedtime
--just before bed, take 1 or 2 OTC Gas X
--go to sleep on my left side, with a pillow between knees and another pillow for arm/should support. I usually wake up a few hours later, so then I switch to my right side.

viewtopic.php?f=1&t=47818&p=433694&hili ... ng#p433694

--consider any stress or unresolved issues that may be upsetting you, or causing digestive upsets
--and if I wake up feeling gassy, I do this yoga pose:

viewtopic.php?f=1&t=54508&p=509145&hili ... na#p509145

Robysue,

I'm just wondering. What you're describing shouldn't be happening. You're using a nasal mask and breathing through your nose like God intended, or so says my pulmonologist. Where is your tongue in your mouth when all this is going on? If you keep your lips tightly closed, your jaws almost together and suck all the air out of your mouth, your tongue should seat behind your front teeth and stay there all night. And that should prevent you from swallowing air, which appears to be what's happening. And sleeping on your side should help, too.

Thanks for the many tips.

Some things I didn't mention, but have been mentioned by others:

1) Side sleeping: I sleep on my side 90% or more of the time. Consciously woke up with the tummy ache when I was in the process of switching from my right side to my left side, if I recall correctly. It is good to know that side sleeping apparently doesn't make the problem worse.

2) CPAP vs APAP. Until last night, the aerophagia was much, much worse for me when I was on straight CPAP at 9cm. A weeks worth of autotitration at home was done with the APAP running wide open. No serious problems during that week and that's part of why I'm now have the S9 Auto running with a prescription of 4--8 cm.

3) Food and drink: The PA asked about this. I don't really think food was the problem, but it maybe it could have been a contributing factor. Drinks, on the other hand: We went to a Chinese buffet last night that has good jasmine tea, and I just couldn't say "No" to the tea, which was fully caffeinated. I'm sure it wasn't the food since I had a "grill while you wait" plate that had food chosen by me and known not to cause me any problems. Didn't make it very spicy either, except for adding some sliced ginger from the sushi bar. But I have decided I'll have to be more vigilant about food and drink even at supper time. It's been really, really hard giving up the caffeine since I love both coffee and tea (both hot and iced). Herbal tea is OK once in a while, but I'm getting really tired of it right now and wish I could have a nice warm mug of fully caffeinated chai since I'm a bit chilly right now because we have the heat off.

4) Reflux: I suppose it's a possibility. Prior to CPAP I'd occasionally get a bad stomach ache with lots and lots of gas. Usually as the result of eating something with too much tomato or too much spiciness. And very seldom more than a couple of times a month. But it's not been an on-going, regular complaint of mine and I've certainly never been diagnosed with GERD, unlike my hubby.

5) Yoga position at: http://viewtopic.php?f=1&t=54508&p=5091 ... na#p509145 This is a position that I know about and have used to help back aches. Have never tried it with a stomach ache. I'll try to remember to use it more often. Funny thing is I think I may have done this position in my yoga workout yesterday evening.

6) Head position:

elena88 wrote: ... but any, try curling up like a cat, it worked for me..

This idea, which is also mentioned on the link posted in #5, is very, very appealing to me: This is exactly how I used to sleep pre-CPAP---curled up in a tight little "Robin-ball" is how my husband describes it. But because I'd read somewhere else here on CPAP that it might help to fight aerophagia by trying to keep the neck straighter or even a bit extended in the other direction a la the CPR and mouth-to-mouth position, I'd been intentionally trying to NOT curl into my familar little Robin-ball. So that's a fix I can look forward to doing---working hard on finding a way to curl up in my ball hose and all

7) Re my nasal pillows and breathing:

Slartybartfast wrote:What you're describing shouldn't be happening. You're using a nasal mask and breathing through your nose like God intended, or so says my pulmonologist. Where is your tongue in your mouth when all this is going on? If you keep your lips tightly closed, your jaws almost together and suck all the air out of your mouth, your tongue should seat behind your front teeth and stay there all night. And that should prevent you from swallowing air, which appears to be what's happening. And sleeping on your side should help, too.

Well if our breathing and upper airways worked the way God intended them to, then none of us would have sleep apnea, right?

At any rate, I do use a nasal pillows mask and have had pretty consistent low leak rates. S9 reports the median leak rate as 0.0 every single night. Most nights the 95% is between 0.0 and 6.5. All the rest have 95% leak rates in the low teens. Max leak rates never exceed the 24 L/min line in ResScan. In looking at detailed graphs, I do see some 10-15 minute periods of "large leaks" on some nights, but not on others. Typically the number of large leaks on a bad leak night is between 3 and 5. And I looked at the detailed data for last night earlier this evening: In the hour before I woke up with the aerophagia, the leak line was a nice, flat constant at 0.0 L/min.

Now as far as where my tongue and teeth are all night: I grind my teeth really bad and have a night guard that I wear every single night. So the jaws stay (too tightly) closed as do my lips. Where does my tongue goes? I really don't think it goes anywhere other than staying right behind my top front teeth, but that's only because that's where the tongue is when I go to sleep and when I wake up.

But I don't know what you mean when you say "suck all the air out of your mouth" because that's the problem: Even though I'm using nasal pillows and the CPAP air is being blown directly into my nostrils, I feel that air coming down into my mouth from the back of my throat even when I am awake and have my mouth very firmly closed. The CPAP air is inflating my mouth like a balloon and there's nowhere for that air to go except to swallow it or try to blow it out of the mouth. But if I open the mouth to try to blow the excess air out, tons and tons of fresh air coming rushing in, as those of you who are unfortunate enough to be mouth breathers trying to work out a system of keeping the trap shut at night know. [Not sure any of that makes sense to anybody but me though.] Basically when I'm still awake with the CPAP on and I'm consciously aware that my jaws are firmly shut and my tongue is behind my teeth, I feel like I'm getting chipmunk cheeks from air coming down through my nasal passages and into my mouth with no where to exit.

I also still feel air on my eyes that seems to be coming up through my nasal passages and into the sinuses and tear ducts---in other words, the "eye leak" feels like it's coming from inside my head and it's there even on nights when my max leak rate is 0.0. [This was one of the symptoms that lead to the PA ordering the autotitration.] However, the way the eyes feel has gotten much better since the PA told the DME to lower the pressure from straight 9cm to the 4--8cm range. But I'm beginning to think that my sinus cavities are somehow creating great avenues for the CPAP air to get everywhere except my lungs.

you know what the best advice was when I came here and everything was a disaster?

someone said," change nothing, just add the machine.."

boy was that a life saver.. as I had changed EVERYTHING.. trying to adapt!

so do your own thing, and let all the rest of it fall into place, it takes time for that.. let all this stuff find a place in YOUR life
instead of you trying to fit into it..

curl up like a kitten, relax, smoosh your nose pillow basins into the bed, or the pillows.. and when you get that pressure situated....

it will come....

Katie, I was hoping you'd pop up !.

Robysue, I'm certainly not an expert and I'm not even a user, I'm just the caregiver for my hubby's therapy, but I'm wondering if some pros might give an opinion about my thought. Is it possible that you're struggling to breathe at such a low pressure and are taking in too much air with that effort? This is not related but I have asthma/sinus and when my sinuses are blocked and I'm breathing/panting through my mouth, I get painfully bloated . This does not happen when I'm breathing normally through my clear nasal passages. Any ideas about that?

I understand about the mouth breathing issue. I also understand the comment about sucking all of the air out. What I have been doing is putting my tongue up against the top of my teeth and then basically trying to suck all of the saliva out of my mouth with causes a suction of my tongue up to the roof of my mouth. I do sometimes still get that mouthful of air. The way i get it out is as I am taking a breath in through my nose I slightly crack my lips out and that pressurized air escapes. Then as I am still inhaling through my nose I close my mouth back up. Basically you have to act like you are swallowing and then leave your tongue in that final position before it goes back to the normal relaxed position. When you swallow your tongue covers your trachea so that the liquid or solid doesn't go down it. You basically need to keep your tongue in that position the whole night. That's my theory anyway.Well some of it is anyway and some is fact.

Hope you sleep better tonight.

Just had another thought. I noticed that you're using the Swift FX. I only tried it for 1 night, and didn't like the way it vented, and it may have been a coincidence, but I had the worst aerophagia that night. You might consider trying a different mask, to see if that makes a difference.

Apanasana is also called wind relieving pose. I find that a supine twist, with bent knees helps also. Move slowly, and with the breath, in both poses.

You said you're using apap at 4-8 cm H2O, what is your 95 percentile pressure? You might try a tighter range, for example instead of a minimum of 4, go 1 below your 95 percentile and 2 above. Or try cpap at the 95 percentile pressure.

robysue wrote:The CPAP air is inflating my mouth like a balloon and there's nowhere for that air to go except to swallow it or try to blow it out of the mouth. But if I open the mouth to try to blow the excess air out, tons and tons of fresh air coming rushing in, as those of you who are unfortunate enough to be mouth breathers trying to work out a system of keeping the trap shut at night know. [Not sure any of that makes sense to anybody but me though.] Basically when I'm still awake with the CPAP on and I'm consciously aware that my jaws are firmly shut and my tongue is behind my teeth, I feel like I'm getting chipmunk cheeks from air coming down through my nasal passages and into my mouth with no where to exit.

I also still feel air on my eyes that seems to be coming up through my nasal passages and into the sinuses and tear ducts---in other words, the "eye leak" feels like it's coming from inside my head and it's there even on nights when my max leak rate is 0.0. [This was one of the symptoms that lead to the PA ordering the autotitration.] However, the way the eyes feel has gotten much better since the PA told the DME to lower the pressure from straight 9cm to the 4--8cm range. But I'm beginning to think that my sinus cavities are somehow creating great avenues for the CPAP air to get everywhere except my lungs.

When I had all that happening to me I had to switch to a full face mask. I tried 3, and only the 4th - the Hybrid was good for me. The Hybrid is good for many women.

robysue wrote:
[Snip]

The CPAP air is inflating my mouth like a balloon and there's nowhere for that air to go except to swallow it or try to blow it out of the mouth. But if I open the mouth to try to blow the excess air out, tons and tons of fresh air coming rushing in, as those of you who are unfortunate enough to be mouth breathers trying to work out a system of keeping the trap shut at night know. [Not sure any of that makes sense to anybody but me though.] Basically when I'm still awake with the CPAP on and I'm consciously aware that my jaws are firmly shut and my tongue is behind my teeth, I feel like I'm getting chipmunk cheeks from air coming down through my nasal passages and into my mouth with no where to exit.

That's what I was trying to get at. Everyone's mouth is different, and you're wearing a night guard, so maybe this won't work for you. It's sort of difficult to explain in words, but my doctor told me that one of the hardest things some nasal mask/nasal pillows patients face is avoiding mouth-puffing. By the time I saw him, I had already figured it out, but he told me the following anyway: With the CPAP machine running, close your jaws and push your tongue forward and against the roof of your mouth. In effect, what you're doing is forming a plug that keeps pressurized air in your nose and your airway. Air from the CPAP nasal pillows pressurizes the back of your throat, forcing your tongue forward, pressed lightly against your front teeth, and against the roof of your mouth, preventing air from passing over or around your tongue and forcing your lips apart, or "puffing." He said to keep air pockets from forming between your tongue and cheeks and you will minimize any infiltration of pressurized air from your throat and sinuses. If you do it right air cannot leak between your tongue and your teeth.

However, with a mouth guard, maybe that won't work. But it does work for me, so I thought I'd offer that. Aerophagia doesn't sound like any fun.

Thanks all for tips for dealing with the aerophagia.

An update: Last night was much, much better: I slept a total of 8 1/2 hours with the CPAP. Got to bed around 11:30 and I'm pretty sure I was sound asleep by midnight. And I did curl up into a Robin-ball last night as suggested by elana's post. Woke up around 5:30 with my nose's insides being very sore and dried out and needing to go to the bathroom. The dry, sore nose was pretty easy to explain---I'm still recovering from the head cold and I forgot to put any Lasinoh on before I went to bed at 11:30. So while going to the bathroom, I also squirted some saline nasal spray in the nostrils and put some Lasinoh around the irritated parts. Put the mask back on and had no trouble getting back to sleep and slept pretty soundly until waking up at 8:30 and actually felt like getting out of bed at that point. Notably my nose felt much better when I woke up at 8:30 than it did at 5:30. Gotta work on remembering that Lanisoh every night. Still had a pretty bad morning headache---felt like a tension one since it ran from ear to ear around the very base of my head/top of my neck area. But it hurt in a different way than a stiff neck does---when I get a stiff neck, it's farther down the neck than my tension headaches are. [And today I did NOT wake up with a stiff neck for once!] Some caffeine and just being active has taken the edge off that headache however, so right now it's just a very mild low grade throbbing.

So maybe Thursday night's problems were triggered by the caffeine in the jasmine tea. Or maybe supper was just a bit too late that night. Or maybe the head cold was much more problematic than I thought.

Re some of the suggestions that have been made since my last post:

Pressure at 4cm might be too low: I don't think so---I don't find myself struggling to breath in when I first turn the machine on and it's at 4cm. And until Thursday night, I really had not had any serious problems with aerophagia since the PA switched me from straight CPAP at 9cm to APAP at 4--** where ** was 20cm for a week of diagnostic autotirtraion (with a max reading that week of a bit over 9cm if I recall right) and now 8cm as prescribed after the autotitration was done. I had had really major problems with aerophagia at 9cm before then. So I don't think I'm sucking in additional air because I'm struggling to breathe at 4cm.

Katie's comment about the Swift FX: Yes, it's exhaust flow is really, really irritating. However I like everything else about the mask and I've now gotten better at figuring out what to do with the exhaust flow. I have noticed that when the APAP pressure is close to 8cm, if the exhaust flow is in a "bad" place it may wake me up. But when the pressure is below 6 1/2 cm (which is pretty close to the median pressure according to ResScan), I don't tend to be bothered that much by it anymore.

Full face masks: I really, really don't want to try one of these: At my titration study the tech first tried to put a nasal mask (not pillows) on me. The mask had a gel-based cushion. I started sneezing uncontrollably every time she got the mask close to my face. Never did get the head straps on. At any rate, I really like being able to scratch my nose and my lips when they're itchy. Also I'm a very, very small person (5' 1" and 108 lbs) and I don't want to have the extra weight on my face at night. Now if I was having leak issues or other evidence of mouth breathing, I'd reconsider. But everything I see in the detailed leak rate graphs seems to support my belief that I'm not having leak issues or problems with mouth breathing.

Slartybartfast wrote: Everyone's mouth is different, and you're wearing a night guard, so maybe this won't work for you. It's sort of difficult to explain in words, but my doctor told me that one of the hardest things some nasal mask/nasal pillows patients face is avoiding mouth-puffing. By the time I saw him, I had already figured it out, but he told me the following anyway: With the CPAP machine running, close your jaws and push your tongue forward and against the roof of your mouth. In effect, what you're doing is forming a plug that keeps pressurized air in your nose and your airway. Air from the CPAP nasal pillows pressurizes the back of your throat, forcing your tongue forward, pressed lightly against your front teeth, and against the roof of your mouth, preventing air from passing over or around your tongue and forcing your lips apart, or "puffing." He said to keep air pockets from forming between your tongue and cheeks and you will minimize any infiltration of pressurized air from your throat and sinuses. If you do it right air cannot leak between your tongue and your teeth.

However, with a mouth guard, maybe that won't work. But it does work for me, so I thought I'd offer that. Aerophagia doesn't sound like any fun.

Well one of the things that I've been noticing is that my mouth guard encourages me to keep my tongue right where you're saying you keep your tongue---right up against the back of my top front teeth and the front part of the top of the roof of my mouth. [The very back of my tongue is not on the roof of my mouth, however, because trying to get the whole tongue up there creates a funny pressure in my undersized Eustachian tubes and middle ear.]

And I don't have air getting between my front teeth and my lips and I don't think I'm "mouth puffing" at all because when I experiment and consciously let my lips or front teeth open up slightly, I do get an uncomfortable blast of air into my mouth and it blows right out the front of the mouth. That feeling is uncomfortable enough to keep me from opening my lips up at all. Moreover, when I feel like I'm getting chipmunk cheeks, the extra air in my mouth is much farther back---the air pocket is all the way back by my molars and it presses on my molars, the back of my tongue (really bad), and the part of my cheeks back by the molars. Fortunately the excess air problem is not something I'm fighting every single night all night long. But maybe I'm getting the excess air where I am getting it because of something strange in my small mouth that's been significantly altered by braces, oral surgery for wisdom teeth, night time teeth grinding, and 25+ years of wearing a night guard combined with my tiny Eustachian tubes, which probably allow little or no excess air to blow through them.

Glad to hear you had a better night. There's a lot to be said for a normal and comfortable sleeping position. I hope things start to improve for you now.

Good to hear last night improved. i had two fairly decent nights wednesday and thursday, not great, but i slept through the night and while i was still tired and not well rested it was better than usual.

last night was not good. i wasn't as tired as early as i usually am, took 1/2 dosage of my anti-anxiety meds which usually help me relax when i go to bed with the mask--wednesday and thursday i took full dosages, earlier on thurs than wed, but maybe because i was so tired to begin with i fell asleep easier and slept through but the grogginess carried over till the morning. this morning may have more to do with my sinuses, allergies, and head cold that just won't go away for good--took my flonase, been using my zyrtec, and saline spray but still woke up with a splitting headahce and a dried out nasal cavity.....

it probably didn't help that i woke up about 5 am, took the mask off out of frustration since i felt as unrested as i did, and fell back to sleep without it. but i was just too aggravated to refit the mask again and go back to sleep

i know what you mean about wondering how long it will take for the therapy to kick in with max benefits....i really need to start getting some quality sleep but since i have a plus and not a pro machine, i only get compliance data and that is frustrating. my doc said that at my sleep study with the mask on they found the 7 cfm was the optimal flow but also had tried 8 and 9, they put it up to 8 since i thought it might help and i think it is better now.