New member with question

CrazyCrow,

I'm joining this late because I've been on vacation---as in camping far away from internet services.

You've got a bunch of conditions that you're being forced to juggle simultaneously. And at a young age to boot. No wonder you're stressed out. In order to provide more useful advice, I'd like the answers to some questions:

Question #1: Since food-related issues are causing problems and since you are very sensitive to many foods and since you're also a picky eater, can you help us out a bit? Instead of telling us what you can't eat and what you won't eat, can you let us know what kinds of foods you do eat?

Question #2: How much caffeine do you consume everyday? I don't mean just coffee---but all sources of caffeine, including soft drinks, tea, and energy drinks as well.

Question #3: What kind of a mask are you using? Since you know you mouth breathe and cannot do a chinstrap, it's very important that you use a full face mask (one that covers both your nose and mouth) even though they are heavier and can be more difficult to seal. In the long run, you'll be more comfortable once you master a full face mask.

Question #4: What is your preferred sleeping position? And what position are you sleeping in when you are using the machine? If you don't know, the can you tell us what position you tend to wake up in when the aerophagia/nausea wakes you up

Question #5: You've been diagnosed with osteopenia (the precursor to osteoporosis) and osteoporosis. I assume this was through a dexa scan. Why were you screened for it in the first place? Have you been light boned all your life? And other than calcium pills (which you say you can't take), what's been prescribed for this condition? Are you on a bisphosphonate (Fosamax, Reclast etc.) of some sort?

Question #6: You've listed the following medical conditions other than the sleep apnea: Acid reflux, headaches and migranes, TMJ, fibromyalgia, hypermobility syndrome, depression and anxiety, ocd, osteopenia and osteoporosis in my neck, and kyphosis and scoliosis. You've mentioned "taking meds", but you've only specifically mentioned xantac (300 mg per day?) and nexium, which you say caused the osteopenia. I assume you are no longer taking the nexium. What is the complete list of daily meds you are on? What meds do you take on an as needed basis---including such things as ibuprophen or antacids? As you already know, medicines have profound and sometimes unintended consequences on the body. They also can have profound affects on the overall quality of sleep too.

Question #7: Do you wear a night guard for the TMJ issues? Does it help?

Question #8: Do you get some weight bearing exercise every day? If so, what kind of exercise? When do you do it? Exercise too close to bedtime can aggravate night time reflux as well as make you hungry at times. Exercise too soon after eating can cause big time problems with reflux.


Now on to some suggestions:

1) Since you feel the need to eat right before bedtime, but it has triggered some really serious problems such as throwing up profusely when using your machine, I'd suggest keeping a food log. Keep track of what you eat for that last meal/snack and your reaction to it. That's the only way you're going to identify what kinds of things will cause minimum problems during the night.

2) Aerophagia is often aggravated by sleep position, as is acid reflux. Yes, I understand that the back problems seem to prevent the "sleep on a wedge or raise the head of the bed" type solutions. But some sleep positions are better than others at preventing both acid reflux and aerophagia. For me, sleeping on my back and my right side make both aerophagia (which is a frequent problem for me) and acid reflux (when I occasionally get it) much worse. I find that when I'm having problems, my best sleep position is on my left side with my head tucked so that my chin is as close to my chest as possible. I do remember that when I was pregnant some 23 years ago with my daughter, indigestion, gas, and acid reflux where really big problems and my OB told me something along the lines that sleeping on my right side (my then preferred position) allowed more acid into the tummy and simultaneously made it more difficult to get rid of the gas. Our insides after all are NOT symmetric around a vertical axis. So it can make a big difference.

3) Although no one else has commented upon it, I will. You write:

I am now going to bed at 6 am. Because I'm always tired I can't get a normal sleep schedule let alone a sleep schedule of any sort period. It's sporatic. I get tired very easily, so I eventually give up due to usually getting a headache from being too tired and go to sleep again.

and

My sleeping all the time causes me to have no friends ;-; My only friend I gave up trying to hang out with. I couldn't wake up. I also had to withdrawl from 2 classes last semester because I couldn't wake up.
If it weren't for my boyfriend living with me I would have no one to talk to.

The irregular, or perhaps more accurately, nonexistent sleep schedule that you currently have is certainly contributing to a whole host of your medical issues and not just the adjustment to CPAP. It is also clear that your nonexistent sleep schedule is now interfering with your life in other significant ways. The lack of friends and the inability to keep up with your college work are NOT insignificant.

You need to get your sleep cycle/circadian rhythm normalized. And I don't mean "normalized" in the sense of going to bed at 10:30-11:00pm and sleeping for 8 hours straight and waking up at 6:30-7:00am every day. What I mean by "normalized" is you need to establish a schedule that you and your body can tolerate. And by "tolerate" I mean a schedule that you are mentally willing to live with seven days a week, a schedule that fits your current lifestyle, and a schedule that gives your body enough time asleep to function.

Using CPAP to get the apnea under control will NOT fix your entire set of sleep problems. It will, however, eliminate one significant source of poor sleep by eliminating the constant cycle of "airway collapse which leads to not enough air getting into the lungs which leads to O2 desats and/or EEG arousals which leads to fragmented sleep" But there are many, many other causes of fragmented sleep that are more than likely at work in your case as well as the apnea. And until you manage to bring all of the causes of fragmented sleep under control, you are likely to continue to feel pretty bad.

And while the meds and other medical conditions are undoubtedly causing/aggravating sleep problems in your case, there's also the issue of pretty severely distorted sleep hygiene that is most likely also feeding much of your bad sleep as well.

So I also offer this set of suggestions for you as well:

A) If you are in serious nighttime pain from the TMJ, the migraines, the fibromyalgia, the kyphosis, and/or the scoliosis, you need to talk to your doctor(s) about getting the pain properly managed. It is difficult to sleep soundly when you are in significant pain.

B) Talk to your sleep doctor about insomnia problems and highly irregular sleep patterns. There are things that can be done to help consolidate and regularize the sleep cycle. Judicious use of sleeping pills may help some people, but a cognitive behavior therapy may be more effective.

C) In order to start trying to get yourself onto a more regular sleep schedule, you should start with this kind of an approach:

• Pick a wake up time that you can live with seven days a week. Since you are a student, you need to balance what time your necessary classes start with what time you feel comfortable getting up at seven days a week.
• Compute a bedtime based on your wake up time: Since you can only sleep for short periods of time anyway, count back about 6-7 hours from your wake up time to establish your "bedtime". For example, if you want to be up by 7:30 AM every day, set bedtime at some time between 12:30 AM and 1:30 AM. Go to bed at bedtime only if you are actually sleepy enough to get to sleep with your CPAP mask on your face. Otherwise, stay up until you ARE sleepy enough to get to sleep with your CPAP mask on.
• Do your absolute best to NOT take naps during the daytime. Naps tend to cause more problems than they fix.

D) Read up on sleep hygiene and start working on improving yours. In the long run, improving your sleep hygiene may do more to help you adjust to CPAP than anything else you can do on your own.

Ive had less acid reflux on cpap

A cheap meathod for acid reflux is to drink a small amount of baking soda. Last I did that there were directions on the box for it so its not like your doneing something weird. Its not a drug so you dont have to worry about that. It works on a chemical level. Acid and Baking soda are chemical oppsite, and will neutralise each other. Though it may give you a little gas and make you burp some. Long term? talk to your Dr you may have things other then sleep apnea going on.

I took Tums for a while, and eventually my body compensated and cranked up my stomach acid generators.... I went off tum,s had worse acid reflux, and eventually my body turned down the acid generators and evened itself out.

Not eating before bedtime = Good

The cpap mask liner helpedme with my drool also... Though it makes the mask leak a little more.

Sorry to hear you had a rough time I hope it gets better for you, just stick with it, and be stubborn about it.

I posted what I can't do because I thought I better just get that info out of the way right away. I've been passed around by the cpap company so much that I'm getting worried my insurance is going to charge me soon. I've already decided to stay away from tomatoes. I haven't had anything spicy in a long time..as far as grease goes I'm not sure how to go about that. Just avoid the really greasy stuff since almost everything is cooked in oil if I cook it at home.

I was born with acid reflux. I threw up a LOT when I was a baby. Like I said before the PPI I took for 11 years decimated my calcium. I live in Arizona anyway...No one goes outside. You'd be crazy. I was REALLY active outside as a child, but then my back problem occurred and it hurt too much to do pretty much anything.

I'm really not sure why I digest food so fast. My metabolism has always been really fast. If I gorge myself on food a few hours before bed I'm fine not to eat again -__- But you know what gorging on food does to acid.
Thanks Insylem. I shouldn't of gotten grumpy anyway. I'm always at a short fuse because of family problems.
"I hope it gets better for you, just stick with it, and be stubborn about it." Well, if the aerophagia can be stopped then by all means I'll wear the annoying thing. It certainly makes me NOT want to sleep, so the moment I get enough sleep to get up for the day I'll take it. So sad it makes me HATE sleeping.

"You've got a bunch of conditions that you're being forced to juggle simultaneously" YESSSSSSS. I can't take several medications or do certain things because they conflict with each other. My doctors keep giving up. My neurologist flat out told me he couldn't help me after doing one test. Plus, I've been told my pain issues will get worse with age. Ooooh joy.


Hmm the kinds of foods I do eat...Basic sandwiches like peanut butter and jelly sandwiches or tuna fish sandwiches. Cereals, but I take the jug of milk and sit down and pour a small amount in at a time so it doesn't get soggy. Mexican foods such as taquitos, quesadillas, and burritos...wow I can't think of anything else besides sweets and crackers. I've been living off of peanut butter sandwiches lately I think. :S

I can't consume caffine unless it's in chocolate. My anxiety makes it produce pain attacks in me. Caffine is the devil to my body. Tea is horribly disgusting and bitter. No amount of sugar will ever change that.

I use the Mirage Quattro full face mask.

I sleep on my side with a pillow between my arms and legs as told to by my chiropractor. I do so even with the machine though it seems to threaten to break my neck. I loosened it considerable, but it leaks when I move, so I don't know what to do.

I was screened for a dexa scan because I had been on a PPI for 11 years. My sister learned about them in class and we were both on it so we both got scanned. Came back with both of us having it. I've read bad things about the medications for osteoporosis and been told it's likely it will give me bone cancer. The calcium pills are TOO large for me to swallow. Or rather after choking on them a large percentage of the time I'm terrified to try again. If there are chewables somewhere that'd be awesome. I've never heard of a small calcium pill. I also was taking..can't remember why I stopped..vitamin d of 1000 ius a day. I apparently have a vitamin d deficiency most likely from no sun light..oh dear lord that sun causes some of the worst headaches of my life.

A complete list of daily meds could be xantac 300 mg twice a day for a total of 600 mg a day, and wellbutrin 200 mg once a day, and nuvaring. I was on celexa, but I was so messed up a month ago I kept forgetting to take it. Before I knew it I was no longer taking it. Those pain meds and muscle relaxers just made the days fly by. I somehow haven't had a migraine in a long time now. FINALLY!
I've been taking a lot of ibuprofen and tyenol lately. "medicines have profound and sometimes unintended consequences on the body" you don't say..can't remember ever having a sex drive since I started anti-depressants in grade school. makes wonderful problems for a relationship

I tried a mouth piece for the TMJ I'm supposed to wear day and night..yea...I've had them chisel that sucker down to the point they can't take anymore away and it's still causes major jaw and head pain to use. If you have an idea on how to wear it like load up on ibuprofen before hand please let me know. I got my jaw scanned. The right is all pummeled looking like a rock and has arthritis. and the left side has major inflammation. I was told the inflammation is making wear it unbearable. I can go no more than 30 minutes at a time. Then I need a long break.
Exercise? What you mean that thing the breaks my back;-; I'll be heading to my 5th I believe PT soon.

I keep being told it will benefit me..well maybe it someone makes the CORRECT plan for me. PT usually has me taking heavy heavy doses of ibuprofen a day and the pain doesn't go away. I did them for a month with that pain being told it was like when u start exercising it's sore but goes away after a while. yea. didn't go away.
Thanks for the food log idea.
Hmm. I sleep on my right side. I have a hard if not impossible times sleeping on my back. And can't fall asleep on my left side. It would take a serious amount of time to adjust to that. Yuck. If it has to be done fine, but the amount of sleep I'll lose will be really bad >.< Ideas for adjusting?
My doctor told me to get a sleep schedule. she doesn't care how late I stay up so long as I'm in bed and waking up at the same time everyday. I'm having..issues managing that and not passing out before the time to sleep. I noticed the grand difference when I was woken up every day at the same time because of pain a short while ago. The meds wore off at the same time everyday thus waking me up. I'm sire I'd manage without the cpap machine altogether if I can get that down. Ehh. It's just getting to where I can stay up without naps.
I will try my absolute best and crack down on that.

How do I get my medical problems under control? My doctors told me there's nothing they can do besides PT for the fibromyalgia, hyper mobility, and back problems.

I have an appointment for a pain management doctor next month on the 6th -__- I can't stand seeing new doctors. Takes forever to get in.

I usually need a minimum of 12 hours of sleep

I still haven't figured out a way to stop my cats from excessively waking me up while I sleep. "I'm hungry, I'm hungry, feed me" uuuugh, I just fed you! I can't leave the food down because my oldest cat is huge and is on a diet. But he used to be 20 pounds and is now 16 I think for a cat of maine coon size that's pretty good. He still has a gut though..but then so do i >.> skinny with a gut..yep REAL proportionate.

Thanks guys. I think I got all of the questions covered. Sorry it took so long. I'm not sure I would read my own post honestly.

Also, turns out a missed a couple posts. i'll read those. sorry.

If you can't eat spicy food, why are you eating Mexican, that is spicier than Italian food. If you can't stand cooking with grease or oil, why not switch to a spray like Pam or some other canola oil spray..... There are ways to conquer food problems, have you tried going to a dietician lately? Tuna fish and peanut butter are good for you, also cereal (whole grain) and milk.

CrazyCrow,

I'm addressing hings you've said in the order I want to address them rather than in the order you put them in your post. It helps me focus on what I want to tell you. I've also broken my response into several smaller posts, each focusing on one critical aspect of what you're dealing with.

First things first: Insurance issues

You write:

I've been passed around by the cpap company so much that I'm getting worried my insurance is going to charge me soon

So you do have health insurance. Is it your own insurance or are you still on your parents' insurance? (I ask because I'm not sure of your age, but since you mention dropping out of classes, I'm assuming you're college age---i.e. early 20s at most.)

Do you know the particulars of your insurance coverage? Or have Mom and Dad always handled those details?

Since you're worried that you might be charged soon, it's time to start learning first hand just what your insurance covers and exactly how they cover it. If the policy is yours, a simple call to the insurance company is in order. Ask to speak to a case manager who deals with coverage of chronic medical conditions. If the policy is your parents, you still need to call the insurance company yourself---but you will need to know the principal policy holder's name as well as all the other stuff usually written on the insurance card you present to the doctor, the DME, or a pharmacy so they can file the claims.

You want to ask the insurance company about how they determine compliance. Different insurance companies may have somewhat different regulations. But typically an insurance company will ask the DME to download the compliance data (and only the compliance data) at about 30 days into therapy. Some insurance companies will require two or more compliance checks at thirty day intervals. Most companies define compliance as wearing the dang mask for a minimum of four hours per day for at least 70%-80% of the days during the trial period. Basically, they don't want to pay $$$ on a machine that's clearly going to wind up being tossed into the closet and forgotten by the patient.

You can't fake insurance compliance by running the machine for four hours without wearing the mask on your nose---the machines are designed to detect the presence of breathing at the mask end of the hose before counting the run time as compliance time. But even the most sophisticated of full data machines cannot tell if you are asleep when you are using the machine. So if insurance compliance is threatening to become at real issue, then you might want to drag the machine out to living room and use it while you are watching tv or reading something for a hour or more each day. This may also help you get more comfortable with the mask and it may help you figure out if keeping your mouth shut with mask on alleviates the worst of the aerophagia. Finally, if your doc is convinced that you are making a serious attempt at becoming compliant, s/he can write a letter to the insurance company asking for an extension on the time to prove compliance.

Finally, keep in mind that insurance compliance is not really genuine compliance. Real compliance is using the machine every single time you sleep---as in never consciously allowing yourself to fall asleep without the mask. And yes, that can be tough. But for therapy to be effective, that's what you need. CPAP is not a part time therapy; in order to gain the most out of it, you need to (eventually) get to the point where putting on mask is just another part of the bedtime routine. It takes some of us longer than others to get to that point. And at the start, baby steps are sometimes necessary.

Food, acid, and aerophagia
Since aerophagia and acid reflux are big issues for you, lets talk about FOOD next.

I want to encourage you to keep that food diary. There's nothing that replaces actual data when dealing with a seemingly intractable problem. I'd suggest keeping track of the following things in the food diary for now.

• Time of lat meal/snack before bedtime. Write this down when you start eating it.
• Food eaten during that last snack or meal AND the quantity of each item. Write this down either while you're eating or right after you finish the snack
• Time you go to bed---write this down when you head off to bed.
• In the MORNING write down the following things:
  • A note about whether you used the CPAP and for how long.
  • An estimation of how many times you woke up feeling bloated from aerophagia or in discomfort from acid reflux. If you can't tell the difference between them, don't sweat it----just keep track of how many times you woke up with stomach discomfort of some sort during the night.
  • A simple rating to describe the level of pain you are in when you wake up and/or the worst pain during the night. Keep it simple. Something like 0 = no pain to 5 = horrible, disabling pain.

If you prefer to, you can easily keep all this stuff organized in a spreadsheet in you want to.

Next, lets take a look at your diet and food that you can and will eat. You say:

I've already decided to stay away from tomatoes. I haven't had anything spicy in a long time..as far as grease goes I'm not sure how to go about that. Just avoid the really greasy stuff since almost everything is cooked in oil if I cook it at home.

I was born with acid reflux. I threw up a LOT when I was a baby. Like I said before the PPI I took for 11 years decimated my calcium.

and

I'm really not sure why I digest food so fast. My metabolism has always been really fast. If I gorge myself on food a few hours before bed I'm fine not to eat again -__- But you know what gorging on food does to acid.

and

Hmm the kinds of foods I do eat...Basic sandwiches like peanut butter and jelly sandwiches or tuna fish sandwiches. Cereals, but I take the jug of milk and sit down and pour a small amount in at a time so it doesn't get soggy. Mexican foods such as taquitos, quesadillas, and burritos...wow I can't think of anything else besides sweets and crackers. I've been living off of peanut butter sandwiches lately I think. :S

I can't consume caffine unless it's in chocolate. My anxiety makes it produce pain attacks in me. Caffine is the devil to my body. Tea is horribly disgusting and bitter. No amount of sugar will ever change that.

Let's break this down:

The GOOD:
You don't do the caffeine thing. Not drinking coffee and tea is a huge help in getting both the sleep and acid reflux stuff under control. What about caffeinated soft drinks? They are often hidden (or sometimes not-so-hidden source of caffeine.

You're willing to give up tomatoes, at least for a while. That should help.

And there is a basic core of somewhat boring, but bland foods that you're willing to eat. Hopefully some of those foods will turn out to be acceptable night time snacks as far as the aerophagia is concerned.

The BAD:
You have a long, long history of problems attributed to acid reflux that were treated for years with PPIs, which you can no longer take due to the osteopenia/osteoporosis.

You admit that much of what you cook for yourself is cooked in oil and somewhat greasy. Now one funny thing about frying things in oil is that sometimes they turn out super greasy and sometimes they really are not all that greasy. So one thing you might want to consider is less deep fat frying, more pan sauteing, and more stir frying where the added oil is kept to a minimum.

You say that you "digest food very quickly". I assume that what you mean is that if you don't "gorge" (i.e. overeat), then you get hungry more quickly than you should---as in you can't make it through the night without waking up to a seriously growling stomach. Not meaning to add to your woes, but---this kind of "hunger" can be a symptom of type II diabetes. You might want to look at the list of type II diabetes symptoms (one such list is at WebMD's Guide to Diabetes Warning Signs If you have not been tested for diabetes, you probably should be.

The OTHER STUFF:
You like Mexican food. (and living in Arizona, who wouldn't like the local Mexican food?) And most Mexican food is at least a bit on the spicy side, but not all of it is. So you may want to carefully examine whether your definition of "spicy" and your stomach's definition of "too spicy" are in some disagreement. In other words, when you're eating Mexican food, pay close attention to the level of heat. And also the other spices---since "spicy" is not always equal to "hot." Another thing to consider is whether peppers---both cooked and fresh---might be contributing some to your problems. I say this because I have very limited tolerance of both tomatoes and peppers. Cooked bell peppers in particular will give me serious gas problems, but fresh ones don't bother me at all. Go figure.

You add milk in small quantities to your cereal to keep it from getting soggy. (I've always eaten my cereal completely dry for the same reason---I hate eating soggy things.) But I'm wondering if there's another thing at work here: Any chance you might be lactose intolerant? In other words, if you drink a nice big 8 to 12 ounce glass of fresh, cold milk, do you sometimes or often wind up in pain a few hours later? Some lactose intolerant people can consume milk and milk products in small amounts without it causing any problems. And maybe that's real reason you wind up adding milk in smaller amounts to your cereal---it slows you down and it helps limit the amount of gastric distress from the milk perhaps? Keep in mind that many lactose intolerant folks can eat cultured milk products without any problems. Common cultured milk products include sour cream, buttermilk, yogurt, and most natural cheeses.

Some Suggestions to try that might help with aerophagia problems
1) Try eating smaller, more frequent and at least somewhat healthy snacks during the evening. And leave at least a couple of hours between the snacks.

2) Try a bedtime snack that has some complex carbs (whole grains) or some protein in it for your bedtime snack. Some suggestions: Dry cereal with whole grain as its first ingredient and preferably one with no added sugar. If you like hard boiled eggs, they'd make a good bedtime snack. If you like yogurt, that can be a quality bedtime snack if you pay attention to the amount of added sugar and avoid the sweetest ones. An ounce or so of your favorite all natural cheese with a few whole grain crackers might make a good bedtime snack. And even a peanut butter sandwich, preferably on whole wheat bread might be a good snack. The point here is that you want and need something in your stomach that's going to take while to digest, but you also want to keep it very, very small so that it causes a minimum amount of problems during the night.

3) Much as you like them, you should try to avoid the sweets, chocolate, and crackers made from refined white flour right before bedtime. While these things may not trigger the acid reflux, they are likely NOT to help you last all night unless you eat enough of them where the volume of food in your stomach may become a potential aerophagia issue.

3) Try timing the bedtime snack so that it not immediately before you go to bed. See if eating a very small snack 30 minutes before bedtime is enough to take the edge off the aerophagia and night time acid reflux problems while still allowing you to get through the night. Once you're comfortable with that, then try moving the snack back to 45 minutes before bedtime and get comfortable with that. And then move the snack back to an hour before bedtime. In other words, incrementally work on training your body to go just a bit further without food during the night over the course of several weeks or months with the eventual goal of being able to go to bed about 3 hours after you last eat anything.

Three seemingly crazy ideas that might not be so crazy after all
Given the long history of gastric problems, I'd suggest getting a few more medical tests done just to rule a couple of things out or possibly uncover some additional problems.

1) Get a diabetes test done. The fact that you get hungry enough to wake you up if don't gorge yourself a few hours before bedtime is significant and it could be a symptom of diabetes.

2) Talk to your PCP about whether you might be lactose intolerant. And how to properly determine whether you are lactose intolerant if s/he thinks that might indeed be a problem.

3) Request an ulcer test. Most ulcers are caused by bacteria (Helicobacter pylori) and respond to antibiotics. But overuse of NSAIDs, including ibuprophen can also cause them. Ulcer symptoms include: A gnawing or burning pain in the middle or upper stomach between meals or at night (your growling stomach perhaps?); bloating; heartburn; and nausea or vomiting. To read more about ulcers, go to http://www.webmd.com/digestive-disorder ... er-disease

Next we deal with the TMJ problems since I've got lots of first hand experience with TMJ issues.

You write:

I tried a mouth piece for the TMJ I'm supposed to wear day and night..yea...I've had them chisel that sucker down to the point they can't take anymore away and it's still causes major jaw and head pain to use. If you have an idea on how to wear it like load up on ibuprofen before hand please let me know. I got my jaw scanned. The right is all pummeled looking like a rock and has arthritis. and the left side has major inflammation. I was told the inflammation is making wear it unbearable. I can go no more than 30 minutes at a time. Then I need a long break.

Sounds silly to ask, but I will anyway: Who is treating the TMJ? Your primary care dentist or a specialist in orofacial pain?

Let me tell you a bit about my own experience with TMJ. For over 25 years I was treated for my TMJ by my primary care dentist and all the costs went trough my dental insurance. Unlike you, my custom night guards were very comfortable and they worked well---in the sense of relieving the daytime TMJ pain and headaches when I slept with the guards. But I literally chewed through guard after guard after guard ... Most of which I had to pay for completely out of pocket because the dental insurance would only pay for a guard only every 3-5 years or so and I was lucky to get 18 months to 2 years worth of wear out of one of them. After starting CPAP I started doing major grinding again and my dentist made a brand new guard---which I cracked within 2 or 3 months. It was at that point that the dentist finally referred me to specialist. The specialist's office coded things differently and has been successfully billing my health insurance company for reimbursement. The specialist first did a series of chewing tests, including an MRI of my TMJs and discovered that my TMJs were literally dislocating every time I shut my mouth and painfully and loudly popping back into place when I opened my mouth. The mouthguards I'd been using for 25 years did effectively cushion my jaw and protect my teeth from the worst of the grinding, but the guards were also inadvertently encouraging me to pull my jaw too far back when I was sleeping. (Indeed all that gnawing I was doing was an unconscious effort on my part to create a target stable "bite target" for my lower incisors to fit into during the night. In my case, the TMJs were badly inflamed and very tender, but essentially sound. And so the TMJ specialist crafted a special night guard with a "ramp" feature to force my lower incisors to hit closer to my front incisors. And two weeks of a totally "no chew diet" that turned into four weeks. As the TMJ specialist put it: If you have a dislocated knee, the doc will tell you to stay off the knee so the joint can heal.o But it's rather difficult to do that with the TMJ. And that's what the no-chew diet plus 24-hour wearing of the guard is designed to do: Allow the TMJ to heal naturally and protect your teeth." And after I was through the "no-chew" phase, there were several months of gradual weaning off daytime wear with a "soft diet." I've spent the better part of a year dealing with this; but my TMJs are in better shape than they've been in decades.

So---if you not yet seeing a TMJ specialist, that's the first step in getting this problem under control.

Next: Your situation sounds much more complicated than mine is because of the damage caused by the long term PPI use and the arthritis. It sounds to me as if you've been prescribed some kind of long term therapy designed to encourage as much healing of your TMJs as possible. But of course, no healing can happen if you're not compliant with the therapy. And of course, you're not compliant with therapy because it hurts like the dickens. So one of the things you need to do is learn from the person treating your TMJ exactly what his/her strategy for your therapy actually is. If the whole point of the guard is just "wear the thing all the time and hope for the best" then you need another doctor/dentist---one who can actually explain to you how the guard is supposed to work to ease your long term pain and what other things you are expected to do. You also need to find out from the person treating you what you can reasonably expect from the treatment.

In other words, you need to find out if the TMJ guard is only designed to prevent fyurther deterioration in your TMJs or whether it is supposed to help minimize the pain you currently have in your TMJs. And how much improvement you can realistically expect.

And you ask: "If you have an idea on how to wear it like load up on ibuprofen before hand please let me know."

Here are the things I was told to do at the start of my TMJ therapy to minimize the pain---both caused by the dislocated TMJs and the guard itself.

1) The use of moist heat is really critical to promote healing and ease the pain. I was told to get a microwave heating pad rather than an electric one. The microwave ones typically have some kind of a gel in them. I was told to follow the pad's instructions about heating it up and then use it for twenty minutes on each side of my jaw three or four times a day at the start. This helped tremendously with the pain. And I strongly recommend it. Wrapping a wet washcloth around the heating pad will make it more effective.

2) I was told to gently massage my TMJs with my index fingers whenever they felt tight or tired or achy. Just gently rub the sore spot in a circle. You don't need to press very hard; press hard enough to feel "good" and not hard enough to make the pain worse.

3) Avoid opening the mouth any wider than needed. And at the same time, try to consciously not close the teeth all the way when you're not chewing anything. Try to avoid intentionally grinding your teeth even when you've got the guard in your mouth.

4) Stick with a NO-CHEW diet for a while. Yes, a no-chew diet is very challenging. And boring. But chewing aggravates the pain from the guard and TMJ's inherent problems. And the only way to rest the TMJ is to not chew. During my first month of therapy I ate at lot of the following foods: Yogurt; cream of wheat and grits; soup; mashed potatoes; what few pureed foods I can stand (refried beans comes to mind); the inside of baked potatoes (I missed the skins); well cooked peas; pudding; ice cream without crunchy additions; and milk shakes. It was really challenging since I'm a pretty picky eater. But I stuck with it because I knew that it would help.

5) Once things are starting to improve, start gradually going to a "soft chew" diet. In my case I was soon able to add things like soft bread (no crusts), tender meat cut into very, very small pieces; noodles; soft cooked vegetables; soft baked goods (no crunchy cookies); cottage cheese; very thinly cut cold cuts; and so on. I was literally on this soft chew diet for months. Yes, I broke the rules now and then. Sometimes I paid for it with the return of real pain. Sometimes I didn't.

6) The occasional use of ibuprophen when the pain is really bad is OK. But keep in mind that constant use of ibuprophen is going aggravate your stomach issues.

One HUGE problem to point out straight away that my mom gives me hell about is..I can't eat whole grain bread
Nope. Not at all. That bread has to be crammed down with some sort of liquid and not easily. Choked down is more like it. My taste buds scream yuck and try to bring it back up.

I can't handle spicy food whether it be eating or digesting it. The spices have to be at a minimum so it's not really a problem.
I'm' still under my parent's insurance. I was told that I have to use the machine just like u said minimum of four hours a day yadda yadda yadda. So since I'm not and the machine has been sitting there and I've been trying to get it sorted out with the company and my doctors I don't know how long that leeway will last.

Yea, even if I do eat I can wake up with hunger pangs and major stomach growling. No clue what to do since the major taste of "wheat" causes me to be able to only eat white bread and white enriched flour. Trust me when I say I've tried to go to multi grain and the like several times only to be close to puking. I had the rest of my dad's sub sandwich and it was the most horrible disgusting bread with oats and crud in it. I poured a puddle of salad dressing on a plate and dipped it in globs.
Mexican food is my favorite food..that and Indian. I don't get spicy types in either. I could NEVER give up Mexican food. I've already given up too much because of my jaw. Give up sweets? along the lines wit the Mexican food. I'd go into depression if I gave it up. I think I have an addition. An addiction that at least brings some happiness to my life. I love my animals and such, but ferrets and sugar just make me SO happy. Ferrets...who knows. don't have one, but I get seriously on a happy high when I play with them at Petco. My parents will NOT let me get a ferret. I understand completely. They are destructive and eventually heavy on the vet bill side. Plus, in this house total counting everyone's animals we have 2 chinchillas, 1 hamster, 4 cats, and 2 rabbits.

Maybe I could do an egg salad sandwich before bed for the whole boiled egg thing...actually I'm really hungry. I want that now. Then again..I plan on taking Tylenol pm in a couple hours to force myself back to sleep. Need to switch this sleep thing around. I got so much interrupted sleep today it was ridiculous.

I had a test done for diabetes before. Only one blood test I believe. I get some serious low blood sugar attacks. I can't stand those, I feel like I'm dying. Plus, I've learned during those not to drink anything cold..I will shake like crazy. My recent discovery of last week was that the chocolate and peanut butter haagen daz ice cream fixes that attack right up I've tried peanuts, cheese, and such for it. Never works. i don't have a primary anymore. Don't tell me to go back to her. That'd be like getting on League of Legends and waiting to the common racist, sexist, degrading @$$ to come around. It is VERY hard to find a primary for some reason. Best one I've had was when I was in Lake Havasu for a few years.

I've been a heavy milk drinker my whole life. People grabbed a soda. I grabbed a glass of milk. I just finished a large glass of milk a couple minutes ago. It's possible, but I'm not so sure since I drink milk so often I think I'd have to be majorly screwed up. I would like to get tested for that though.

An ulcer test would be good, but I think as of a few days ago I have IBS. I'm not going into that since this isn't a board for that and that's quiet personal.

A specialist is treating the TMJ.

"If you have a dislocated knee, the doc will tell you to stay off the knee so the joint can heal" lol funny I've had that happen there was an ambulance and everything. And NO i DON'T recommend staying off that leg. They put me in a brace and had me stay off of it. Made things SERIOUSLY worse.

I was never told to do a no-chew diet. I don't think my hunger could take it.
I'm sorry if this sounds dumb..but how in the world would you get a heating pad to stay on your jaw?
"I was told to gently massage my TMJs with my index fingers whenever they felt tight or tired or achy. Just gently rub the sore spot in a circle" I was told to as well, but it has yet to help once. And trying to avoid opening your mouth wide as told to me as well.

no-chew? That's rather tricky isn't it? I would have mashed potatoes, inside of potato like you said, refried beans, ice cream (I chew all of those anyway -_-) and then soups like my favorite potato leek soup, pudding, and milkshakes. I'm fairly certain I would starve to death though? I'm stomach digests through that stuff like crazy. In fact my bile sometimes stays through my colon :/ I only have a gut due to the absurd amount of sweets I eat like when it started. I got a coupon for buy 1 get 1 free cinnabon cinnamon rolls..yea..I ate 3 in less than a 24 hour period. One of my worst mistakes.

As far as soft chew foods go. I plain out can't chew tough food. It hurts so bad I start to tear if I try. I have to smash the crud out of the western bacon cheeseburgers from Carles Jr if I get them. They are too thick. As a child I found that cottage cheese is nasty by itself, but when eaten simultaneously with apple sauce it's amazing!

For some reason a little over a month ago I had severe pain in my neck/shoulder/arm and had gotten a MRI of my upper back. It came back normal. My neurologist said he couldn't help me and to go to a pain specialist and that he wouldn't give me any prescriptions, just to take 3 ibuprofen 3 times a day. I added the Tylenol due to the ibuprofen not doing anything by itself. The pain has mostly subsided about a week ago since. I had a full month of SEVERE I-can't-dress-myself pain. It just kind of melted away. I HATE taking meds, so if I don't have to I won't. I hate the side effects and I choke easily.

Thanks so very much for helping me. One more thing. I was told to soak my mask, humidifier, and hose part in warm soapy water. Where in heavens name do you do that? The bathroom sink is kind of small..and you spit in it after brushing your teeth :/ The kitchen sink..just ew. The bath tub..that's more disgusting. I need to wash it before using it again and I have no clue how.

OH! I forgot to add from last time:
"Keep in mind that dealing with sleep apnea and sleeping with a machine at night is losing something important to you (freedom of sleeping normally). Becuase of this huge change, we end up dealing with the normal 5 stages of grief - denial, bargaining, depression, anger, and acceptance. The order may vary, but we all get stuck dealing with it, and some stages last a lot longer than others. " I feel like..the day humans need machines to breathe when they sleep is really the day humanity should probably end. But it did not. I feel SEVERELY depressed because of that dumb mask. It was the ONE thing I prayed not to have. But of coooouuuurrrse I get it. Worst luck. Everyone tells me my luck is the worst they have ever seen. Like going through a driving course. Supposed to get my licence right away. a 1% chance of getting pulled for a random road test anyway. got pulled for it. one time when I played monopoly...got sent to jail twice in a row..finally got past go..hit tax. GAH! Just a couple instances of bull that happens.

One last thing..."If you can't eat spicy food, why are you eating Mexican, that is spicier than Italian food" hah? I had NO idea that Italian food was spicy to being with. That BLOWS my mind. Only thing I can think of that is spicy is that Godly zuppa tuscano soup from olive garden. I managed to find out how to make it at home. That has to be my hands down favorite food. I think I'll go get the ingredients for that tomorrow. See what you've done!?!?

Onto the sleep comfort issues triggered by CPAP.

If you can force yourself to keep working at the CPAP for a period of six months, you'll be able to figure out solutions to the aerophagia and sleep position problems with ample help from this forum. But only you can provide the will-power and downright stubborn cussedness to stick with a therapy that you know will do you good in the very long run (as in "the next fifty years") that is making your current life (as"the next six months") so miserable.

About your sleep comfort issues you write:

Well, if the aerophagia can be stopped then by all means I'll wear the annoying thing. It certainly makes me NOT want to sleep, so the moment I get enough sleep to get up for the day I'll take it. So sad it makes me HATE sleeping.

I understand how the aerophagia (and everything else CPAP-related) is making you hate sleeping. I really do. I went through my own protracted battle with adjusting to CPAP. Aerophagia was a major contributor to my long battle with CPAP-induced insomnia. And for a very long time I absolutely dreaded going to bed each night and I had major anger issues. In my case, I finally resorted to getting some anger management counseling from a psychologist who uses CBT techniques.

But getting the aerophagia down to a bearable amount was a necessary task. In my case, I was working with a PA in my sleep doc's office who was willing to listen to my on-going complaints of severe aerophagia. She first authorized a week long autotitration which verified that I was slightly over titrated at 9cm. And she then authorized a change to APAP with a 4-8cm range. That took the edge off the worst of the aerophagia, but did not really make the night time bloating bearable on a daily basis. And so after two and half months of sheer misery, she suggested that I be re-titrated on a bi-level machine. The switch to bi-level really helped me, although I had to have a second bi-level titration study done and switch to auto bi-level before I could really say that my aerophagia was clearly under control and no longer an issue. Now mind you, I still have to do all the other stuff---as in watch what I eat close to bed in particular and watch what I eat that triggers gas and acid reflux problems in general. But getting the pressure correctly set was an important part of the whole puzzle.

So---even though you're not getting much help or sympathy from the sleep doc's office you should still be complaining to them. You might ask the questions directly: Can my pressure be reduced? Can I be switched to an APAP machine for a week or two to see if my pressure could be reduced? Can I be switched to APAP to see if that helps reduce my aerophagia? And if switching to APAP doesn't help, then proactively ask about bi-level machines.

I sleep on my side with a pillow between my arms and legs as told to by my chiropractor. I do so even with the machine though it seems to threaten to break my neck. I loosened it considerable, but it leaks when I move, so I don't know what to do.

One suggestion is to replace the pillow under your head with a special CPAP pillow that has a cutout for the mask to hang down into. That should help a bit with the feeling that you are threatening to break your neck when you try to sleep on your side.

As for the leaks that happen when you move around in bed: If they're bothering you, start by simply reseating the mask in your new position: Gently pull the mask slightly away from your face and then let it settle it back down. That should fix the worst of the leaks. You might also want to read through JanKnitz's guide on Taming the Mirage Quattro for some very practical tips on dealing with the leaks. But if the leaks aren't waking you up don't get too worried about them right now.

Hmm. I sleep on my right side. I have a hard if not impossible times sleeping on my back. And can't fall asleep on my left side. It would take a serious amount of time to adjust to that. Yuck. If it has to be done fine, but the amount of sleep I'll lose will be really bad >.< Ideas for adjusting?

Sleeping with a full face mask like the Quattro and a six foot hose attached to your nose is an art. It does get easier with time---you eventually start to figure out what works for you and what doesn't. In general you want to aim for a sleeping position that maintains as much of your original position as possible.

But---given the aerophagia and the long history of reflux problems, you might want to try to switch to sleeping on your left side. (There's no good reason for trying to learn to sleep on your back---apnea is typically worse in that position and it can also aggravate back problems as well.)

As I said before, I originally preferred sleeping on my right side to my left side. But during my first pregnancy my daughter wedged herself up near my stomach and kicked it (hard) every time I ate anything and crowded her. Nights were particularly problematic and I had serious gas problems night after night for the first time my life. My OB explained that the position of the opening of the stomach was such that sleeping on the right side usually minimized problems with acid reflux and gas at night. So I wound up making hubby change sides of the bed with me and much to my surprise, sleeping on my left side did a lot to help the nightly pain.

As for getting used to it: Well the immediate lack of pain while trying to get to sleep was all I really needed. I'd always rolled from one side to another when fighting nasal congestion and so it wasn't like I felt uncomfortable on my left side. It just felt different. But the biggest difference was that there was so much less gas and acid pain no matter how much my daughter kicked my stomach.

Even now I have a slight preference for sleeping on my right side----as long as there's no stomach pain or aerophagia. But when either gas/acid reflux or aerophagia threatens to kick in when I go to bed, I find being on my left side is simply much more comfortable. And comfort encourages sleep whereas pain encourages insomnia.

So my advice to you is this: Lie down on your left side for a while when you first go to bed just to see what it feels like. If it's too strange to get sleep, then turn back over to your right side. As long as there's no pain and no impending sense of aerophagia, fall asleep on whichever side you prefer. But if you wake up in pain and you're on your right side, then turn over to your left side and see if that helps to alleviate some of the pain you are in. If changing sides helps the pain, you'll quickly adapt to avoiding the more painful side.

Just a note on the cat issue. Large breed cats such as Maine Coons and Ragdolls are known for having a fat pad on their belly. So, if it is not extreme, it is healthy, even if there is fat there. If he larger boned than a normal breed cat, then 16 lbs may be just fine. My Ragdoll male great at 16 lbs, and a bit chubby at 17.

I have also found that larger kibble helps with maintaining weight and not gaining it. My cat would inhale food when I got him. I could not leave food out. He got up to 20 lbs. I changed his food to Royal Canin Maine Coon food. It has larger kibbles, and even glucosamine to help the larger cats. On his own, with food available 24/7, he lost weight. He went down to 16 lbs, 1 ounce and stayed there for 5 years. I didn't have to do anything. He had to eat slower because he couldn't inhale the larger pieces. And he learned to walk away from the bowl, satisfied. He did gain some weight this past year, but that was because another cat died, and thus his exercise program was reduced.

You might give the larger kibble a try and see if you can't leave the food out at night, thus eliminating one of the sleep issues.

I'm out of here, I'm beginning to think we are being had again...another or the same one.... sickwithapnea type......
We are not medically trained people, we are patients trying to help each other out and if someone does not want help,..... we are not helping as this person is not "listening".

Ditto, Nan.

Suz

Well ignoring the two whom I feel really irked with.
I came here because my doctor refused to listen to me.
I think there is a misunderstanding that is really being stressed out here. I don't believe I'm really having bloat or gas issues. It's heartburn of the worst caliber you can possibly imagine. I remember the last thing I ate before going to bed that night I used the machine I had falafal and I'm fairly certain that isn't greasy or spicy O.o
I'm was hoping someone would have an idea on how to prevent the aerophagia since my doctor brushed me off.
I'll try laying on my side tonight with the mask on, but I wish to use the machine before I go to bed first as well.
I would like to know if the machine IS causing this horrid horrid acid.

Does falafal have anything in it to cause heartburn? It's never given me it while I'm awake.

I could be getting bloat and gas from it, but the pain from the acid blows ANYTHING even my neck pain - which causes me not to notice the other pain - out of the water.
I'm sorry for my lack of communication and understanding I know I've been hard to deal with. Thank you for sticking with me.

EDIT: question..is the mask doing this whole inflate and deflate thing because of the bubbled up cushion? It like moves going against and away from my face as I breathe. It's distracting and annoying.

My cat is a mix, but always gets the comment by new people on how big he is. He could very well have maine coon in him. It's my guess. The vet had him switch to natural choice weight control. The kibble bits are very tiny. He does not chew them. Thank you for the advice and the info on the the belly being normal.
EDIT: I didn't know that maine coons grow slowly. yea, that is not him at all. In the first week he had him he almost doubled in size. I've never seen anything grow like that before.
I just looked up pictures of black maine coons. He really fits the bill. Except for his orange eyes :3

I'm thinking of making an appointment with my doctor and seeing if I can't persuade her in person. I already left a message saying I was going to try a lower pressure.

I may choose to ignore you two and continue to try things out and seek help. Or I may give in to the irritation and rude rude comments you just made.
I've been around many people and you two do in fact since you went OUT of your way just to comment planned to be rude in the first place.

Perhaps you could explain more about exactly what problems you are having. You have mentioned the Aerophagia.

From a website, Aerophagia, is a condition where patients swallow too much air. This air then goes directly to the stomach which can result in a number of complications such as belching, feelings of bloating and abdominal pain.

Symptoms of Aerophagia

• Feeling bloated/full

• Belching

• Passing Wind

• Reflux

This has many causes and can be a result of a range of lifestyle habits such as chewing gum, drinking carbonated soda drinks, eating too quickly, using CPAP machines (continuous positive airway pressure for sleep apnea patients). Any of these situations can cause you to swallow excessive air and so if you experience the symptoms listed above then you should try to avoid fizzy drinks and chewing gum.


When I read your first posts, I was thinking you were talking about bloating, and not reflux. I know you mentioned reflux, but i thought that was simply one of the problems you already had before starting cpap.

Can you tell us what is new with cpap compared to before cpap? That may make it easier to figure out how to help you.

As for Maine Coons growing slowing, yes and no. Maine Coons are considered a slow maturing breed, because they are not fully mature until 4-5 years of age. This does not mean that they grow slowly. I'm not sure what their average weight gain is the first year, but I can tell you that the Ragdoll, the second largest breed (also slow maturing), averages a pound a month for the first year for males. And there are many 8 month old Ragdolls that weigh 10 to 12 lbs already. Maine Coons are larger. I have seen many Maine Coons who are 20 lbs between 12 and 18 months. Over time, they get longer, thicker, and add more weight. But they still grow fast the first year. The main way to tell if your cat may have Maine Coon in him is his bone structure. Are his feet larger than the average cat, thicker legs, larger head, etc? Most cats would be fat at 15 lbs, but a Maine Coon can be 20 lbs or larger and still very fit and proportional.

I have only had heart burn of that severity twice before. It is very very painful. Just heart burn that has kicked it up a notch..or three. I thought that I maybe had forgotten to take my xantac since I have one heck of a bad memory. I did accidentally double dose on it before. Nothing happened. So I thought that I'd take another one in case I forgot and if I didn't forgot nothing would happen anyway. A while later the acid wasn't any better. I tried to munch on something to get rid of the acid. I accidentally choked on it...somehow . I coughed until I threw up. Hurt my throat because of all the bile. Threw up more bile about an hour later after it came up my throat and DIDN'T go back down like normal but instead came into my mouth.
It was like my stomach was trying to kill me from the inside out. I have to REALLY F up my diet AND not take my meds at the same time for that to happen.

When we got out cat he was a 8 week old kitten. I was the size of my smallest chinchilla. He grew at the most terrifying rate. He has very big paws...and won't let me clip them. He acts like I'm killing him. Screaming/shrieking, growling, slashing, biting, the works. He needs his claws clipped so bad it isn't funny. I'm thinking of taking him to the vet's and clipping his claws in the waiting room. He acts like a good child there. Except for last time when they had to gas him to clip his claws and draw blood for tests...he kept biting EVERYONE who got near him.
Drama king. <--kinda off subject though. I don't want to tick anyone off by going off subject.

I just washed my cpap parts and am waiting for the last bits of water I couldn't reach to dry. I going to put it two pressure settings lower.
I tried a baked potato before bed. It's been an hour since and I'm not hungry yet so so far so good.

Though I did notice tonight due to issues in my life (not all health issues, heavily family) I keep waking up feeling good and feeling like "I don't want to deal with everything" so I fell back asleep. Which only takes a couple minutes anyway.