I need help and encourgaement

[Sydneyguy]

Hello everyone

I have been recently diagnosed with pretty bad sleep apnea. (apneas happening 51 times an hour). Ive prob had it for years but not known it. Ive always complained about being tired.

I'm 38, pretty healthy, 75kgs, 175 cms height - I'm in good physical shape. This has been a huge blow to me personally.

I also have pretty bad allergies (all my life) so breathing through my nose doesnt really happen.

Was very stressed about the reaction by my partner of needing a machine for the rest of my life, but he has been amazing and supportive.

So, I got a nasal mask with chin strap. I hate the feel of it and its a little clastraphobic.

Ive tried it 2 nights in a row. The first night I couldnt continue after 3.5 hrs as I felt like I was filling up with air. And my stomach was a bit painful. Last night I only lasted 2 hrs. It was making whistle noises and then the tube had water in it which was making a sound as well. I couldnt sleep once the air ramps up to full force (im set on 15).

Sooooooo

- Has anyone experienced air in the stomach and what do I do to overcome this?
- And how about water in the tube? (The humidifer was set to 3 and I turned it down to 1).
- Did anyone struggle with the machine initially but then overcome it and feels much better?

I feel just terrible about the whole situation. Im going to get 2 ENT surgical opinions and Im also going to book in to a dentist to discuss a mouth guard.

But its lots of money for no guarantee of success.

Thoughts?

Good luck everyone

[Pugsy]

Air in the stomach.....aerophagia
wiki/index.php/Aerophagia
There may be some settings on your machine that would offer some relief...so what brand and model machine are you using?

Water in the tube.....rain out or condensation in the hose.
Placing the machine below the mattress lets gravity help....warmer bedroom air will help....lowering the humidity setting may help but may dry out your oral/nasal mucosa....adding a hose cozy to help insulate the hose to prevent the cool down that causes the condensation will help.
Depending on which brand and model machine you are using...they may be additional options...so again what equipment are you using?

- Did anyone struggle with the machine initially but then overcome it and feels much better?

Finally...yes.....the answer to this question. Happens all the time. While a few lucky people take to all this like a duck to water...most people will find it takes time, patience, lots of work and a good attitude.

[ubnoxus]

I think a good attitude is the big factor for most people. If you are positive and don't let the news of sleep apnea get you down, are excited to get treatment going, and go into with a can do attitude the therapy will be easy. If you go into it hating the idea, worried how the spouse or girlfriend will react, and hate the idea of an "alien" on your face you will fail miserably. Seems to be what I have gathered in all of my research over the years on XPAP therapy. Most problems can be overcome with trial and error on some and just persistence on others. Stick with it and listen to the wise ones on the forum and you will do great.

[Ontario CPAP]

I'm not much older than you and also in reasonably good shape (95 kg, 188 cm) and was diagnosed recently with an AHI of almost 50.

I was uncomfortable with the mask when I first started using the CPAP. A couple of things helped me adjust in the first few weeks.

First, if your machine has the capability of reducing pressure in the outgoing breaths (e.g., C-FLEX on the Philips Respironics) put that to maximum.

Second, focus on relaxing and take deliberate, slow breaths. Believe it or not, after a while you'll find the breathing easier. This may be the hardest task psychologically.

Third, if your machine has a ramp feature, use it. It's a lot easier to fall asleep at a pressure below 10 cmH2O than at 15. Let the machine ramp up to 15 over a long period.

Fourth, if you have a heated hose and still have water accumulation ("rainout") your room may be very cold. If possible, increase the room temperature. I would recommend 22 or 23C at a minimum.

Fifth, if at all possible ditch the chin strap -- a small amount of mouth breathing isn't a major problem. I wore a chin-strap during my titration study and did not enjoy it at all. My DME supplier told me that very few of her clients use chin straps. I've now "taught" myself to keep my mouth closed through practise doing so every night as I was falling to sleep. It's actually possible to have your mouth open and not mouth breathe. It takes a bit of getting used to.

Sixth, try really hard to keep the air coming out of the mask's built in vent from washing against the pillow or sheets. That means staying on the edge of your pillow when sleeping on your side or for that matter sleeping on your back (although OSA is usually worse on your back.) I found keeping the wooshing" noise to a minimum is important.

CPAP does take some getting used to. At first, I made the 4 hour compliance limit a personal goal to achieve. After a while, I was able to go 5 or 6 hours in a row without a problem, and in fact started looking forward to hooking up to the CPAP machine once I realized how much better I felt in the mornings. I had a period around Christmas where I "fell off the wagon" and was only able to go 2 or 3 hours, but one night I was so tired I went 8 hours without waking up, and just like that I was back to normal again with 4 to 6 hours of CPAP use at a time.

Good luck, and keep at it! The first time you are able to get a solid 6 hours of CPAP sleep, I hope you will be absolutely amazed what it feels like to actually have a proper nights' sleep. Before using a CPAP, I had honestly forgotten what it like to not be tired in the morning -- or for that matter I may never have known.

[Sydneyguy]

Thank you so much for the comments. Ive terribly down atm over this.

Im going to stick at it.

Im just heading out but will respond more fully on my return.

Best wishes to all

[DEXSUZ]

Sydneyguy:

I'm older than you but have always been in good shape, exercise religiously, and have many commendable life habits. Nonetheless, I've been a lousy sleeper my entire adult life and began CPAP one year ago. Right off the bat, I had many of the problems you've mentioned but have found nocturnal bliss as I adapted to the gear and the way it works.I've got a simple program that did wonders for my adaptation to assisted sleep. Here it is:

This is the four-step program I devised. I had a tremendous sleep study at the local krankenhaus but ran into a granite roadblock as I attempted to get accustomed to masks on my own. You might want to give this a try:

My main advice is to back away from immediately trying to do all-nighters with your full-face equipment. Use my four-step weekly plan WHICH WORKED WONDERFULLY for me:

1) During the first week sit, watch TV, or read with your equipment whirring away next to you. Get accustomed to the sounds, feelings of the moving air, and all the external trappings of the great chance at quality sleep you are nearing. Do NOT go to bed with the equipment.

2) Take the phone off the hook, draw the shades, evict everyone from the house, don't think about any nearby clock, and loosen your clothing as you lie on your bed in mid-afternoon. Turn on the CPAP gizmo, put the mask on your face, and close your eyes. Think peaceful thoughts, whatever they are to you. At some point in the week you WILL fall asleep. After you have this nap, you'll be amazed at what a refreshing experience it was.

3) During the third week have all your CPAP gear ready for action as you go to bed for the night. As you've done so many times throughout the years, you'll awaken far before morning. When you do, slap the mask on your face and turn on the CPAP gear before your groggy brain has any idea what's going on.

4) After successfully completing the first three steps at your pace, decide on a night (mine was March 3rd) when you have full confidence and will retire for the night WITH your mask on. You'll succeed!

My biggest mistake was expecting everything to go perfectly from the first night. One must be patient and keep anxiety as far away as possible. Come March 3rd (just a few days from now), I plan on some sort of goofy celebration to mark one year of refreshing sleep I never had - over four decades - before last year.

Best of luck and God bless.

[Kennerly]

Sydneyguy:

You mentioned that in the past you've had issues with allergies and nasal congestion. Keep in mind that a full face mask can route some of that air through your mouth. Or all of it when you're really stuffed up.

During the acclimation period I wouldn't let any one thing get under your skin too much, just take the problems as they come. The problems tend to seem much bigger than they really are, and once you get a little farther down the road this stuff won't seem so foreign. When you're dealing with a new diagnosis it's tough to get a decent perspective on things -- the human mind doesn't turn on a dime. But in the long run adaptation is what the mind does best.

Back to masks, over time you'll probably try a number of them and gradually get to know what works best for you, so don't let the current one become a big deal. It's just one test drive and there are a lot of other cars on the lot. Over the next few nights try to sort through what the specific issues are, and keep coming back for ideas. There are products that can help where the mask causes skin irritation and others that will alleviate discomfort caused by straps. And you can add straps to tweak the overall fit.

[sydneyguy]

Hi everyone

Well Ive lasted almost 4 weeks.

I have the New Phillips Respironics Remstar Auto 60 series with heated tube humidifier.

Im using a resmed Swift Fx mask.

Things are getting a little better. Though Im having huge anxiety issues and I find I wake up at 4 or 5am every morning. So I am tolerating the mask but Im not sleeping for 8 hrs.

Thanks so much for the kind words and encouragement.

[Janknitz]

If you are having anxiety issues, it's a good time to look at your data.

When CPAP treatment is optimized, the anxiety should be diminished, because you're not bathing your blood in stress hormones triggered by lengthy apneas all night. So the fact that you're still waking with anxiety should be looked at--you may need a different pressure or something to smooth things out.

There may also be other reasons you are waking with anxiety around that time of the morning. Typically, we have an insulin surge around that time--your body is preparing you to wake up. For some people, who are insulin resistant, the surge is poorly calibrated and can cause waking, anxiety, high blood sugars. So if it's not the CPAP, that's the next place to look. It could also be an adrenal issues.

Check the CPAP data first, because that's certainly the simplest thing to tweak.

[robysue]

Things are getting a little better. Though Im having huge anxiety issues and I find I wake up at 4 or 5am every morning. So I am tolerating the mask but Im not sleeping for 8 hrs.

Does the anxiety start after you find that you are awake at 4am (again) or are you waking up anxious?

If you are waking up and then getting anxious because you are now awake[/], it may be that you need to focus more on learning to not stress out over the wake. A few wakes here and there are pretty common even in people without apnea. So one thing you might try is to try to not focus too much on the wake. Don't look at the clock when you first wake up and don't watch the clock once you are awake.

Rather, scan your body and assess the situation: If there is an obvious problem---such as a leak or you're in an uncomfortable sleeping position, deal with the problem and then snuggle back into the covers and allow yourself to get back to sleep.

If there's no obvious problem to address, then just snuggle back into the covers and allow yourself to get back to sleep and while you're trying to get back to sleep, try your best to not think too much about the wake. It's important to not go into worry mode where you allow your brain to start racing along trying to figure out why you're awake and how to fix the big problem of always waking up at the same time; instead focus on relaxing and going back to sleep for tonight.

[millich]

Generally, if I wake up and APAP seems to be bothering me, I roll over and hit the ramp button. The lower pressure seems to help me go back to sleep quicker.

I hope you will hang in there. CPAP can make such a difference in your life and in your health. I'm approaching 5 years of being a "hose head" and I won't go without it for a single night.

[Sclark08]

I think we all need help and encouragement from time to time. Like you say just the diagnosis of OSA is a blow to your ego. I also feel the medical community is very poorly trained and don't want to admit it. There are so many questions they can't answer it is very frustrating when you go to them looking for answers, I have learned more from websites like this , just hang tough and remember you have to be your own advocate! Best of luck

[ChicagoGranny]

Things are getting a little better. Though Im having huge anxiety issues and I find I wake up at 4 or 5am every morning.

You need to post what your data is showing. Are you using SleepyHead yet?

[prion]

Hello everyone

I have been recently diagnosed with pretty bad sleep apnea. (apneas happening 51 times an hour). Ive prob had it for years but not known it. Ive always complained about being tired.

I'm 38, pretty healthy, 75kgs, 175 cms height - I'm in good physical shape. This has been a huge blow to me personally.

I also have pretty bad allergies (all my life) so breathing through my nose doesnt really happen.

Was very stressed about the reaction by my partner of needing a machine for the rest of my life, but he has been amazing and supportive.

So, I got a nasal mask with chin strap. I hate the feel of it and its a little clastraphobic.

Ive tried it 2 nights in a row. The first night I couldnt continue after 3.5 hrs as I felt like I was filling up with air. And my stomach was a bit painful. Last night I only lasted 2 hrs. It was making whistle noises and then the tube had water in it which was making a sound as well. I couldnt sleep once the air ramps up to full force (im set on 15).

Sooooooo

- Has anyone experienced air in the stomach and what do I do to overcome this?
- And how about water in the tube? (The humidifer was set to 3 and I turned it down to 1).
- Did anyone struggle with the machine initially but then overcome it and feels much better?

I feel just terrible about the whole situation. Im going to get 2 ENT surgical opinions and Im also going to book in to a dentist to discuss a mouth guard.

But its lots of money for no guarantee of success.

Thoughts?

Good luck everyone

I'd try a full face mask. My feeling of claustrophobia went away with a FFM. I'm self treating with no support other than here So appreciate the fact that you have insurance, a real sleep test AND that you caught the problem fairly early in your life. I'll bet I've had OSA and CSA most of my adult life and didn't catch it until I was
almost 60 years old. Many times I could have fallen asleep at the wheel and not been lucky enough to catch myself. Not to mention all the might be catastrophic
health consequences that apnea brings. I had no idea how destructive it can be. I only started to connect the dots because of snoring. The really funny thing is that
for years I had an irresistible need to nap in the daytime. I have an African Grey parrot that "napped" with me. She picked up my snoring pattern. Anytime I sat down
in my "nap chair" to watch TV, she would "snore" complete with the snort and gasp of a good long apnea event. I'd yell at her to stop so we could watch TV. That was
a good part of the start of my search about sleep apnea. My wife said "See, Chelsea is copying your snoring. That's what I have to listen to." That was just another puzzle
piece. I could go on but look up my other posts for the whole story. Just be thankful you caught yours early.

[GregLH]

I have had my CPAP for only one week and still struggle trying to keep it on at night. My record time for wearing it so far is about 3 hours. Although my experience doesn't help you, knowing you are not alone might be somehow encouraging. I am trying different settings on the machine, different sleeping positions, trying to get use to this contraption on my face and breathing with it on. It's kind of frustrating because I want to experience the benefits of the therapy. I want to feel rested, alert and remember a persons name I've know for years. I'd like to believe that all my efforts to date indicate a determination to make this work. Since I find the nasal cap so restrictive I may talk to my doctor about trying out the nasal pillows? I looked at pictures of the nasal pillow and it seems to be very similar to the nasal cap except the pillows go into your nose so I don't know if that will be any better. I would tell you to try not to get too discouraged, explore your options, be determined to make it work. Focus on the benefits think of your health and well being. Good luck to you. This is not impossible to do, it's just something new and different.