New here...my OSA story...help?

Hi, I'm new here...just found this forum from doing a google search. Wish I had found it last years.

Okay...I'm 46 year old male who is about 30-40Lbs over weight and s/w heavy smoker. For a few years now my wife has been telling me that I snore really loudly, but I really didn't take any notice of this until last summer when she told me it was either me or her that had to go...my snoring was intolerable. For awhile I slept on the couch or another bed in another room, but this was doing nothing for our relationship so I finally made an appointment to go have a sleep study done. This was done through my primary care physician's office by way of phone call...but I was referred to an actual sleep clinic.

When I finally got to the sleep study at the end of Sept. last year, I was given a questionnaire. It asked questions about if I was tired in the morning, if I fell asleep or felt tired during the day, etc. My answers to all of those were a big NO. I never felt tired, always fell asleep immediately, always slept fine during the night. My only concern was my snoring. The nurse who did my intake told me that I was just in "denial" and as soon as I started CPAP I would feel so much better....what in the world is CPAP...why are they assuming stuff about me...I was put off to say the least.

Anyway, the sleep study did not go well. The room was cold...the bed was hard. The pillows uncomfortable and the hallway noise. On top of that, all the wires were in my way, not to mention that I think they scalped me trying to put electrodes on my head and those areas hurt. To me, my sleep study was the most restless sleep I had ever had and it only felt like I slept a few minutes during the night.

The next morning (or endless night), the tech came in and told me that I had actually fallen into REM sleep several times (unbelievable) and although the Dr. would have to look at the results, it appeared that I had very severe OSA. In a few weeks I was scheduled for a "fitting" and another sleep study.

On my second time, things were not much different. But this time, air was being forced into me at an incredible rate and I was actually gagging from it. The tech had to come in to tell me to turn on my side several times, or to turn on my back. Evidently, on my side, I had no OSA, but on my back it was severe.

The follow up meeting with the Dr. was a shocker. I was going on what was called a B-Pap machine. He told me that although on my side, I was looking half-way-decent, there were still issues, and that over-all, my breathing was stopping an average of 50-60 times an hour. Wow! I can't believe it. I was having no life-style issues from this and was feeling fine through-out the night and the next day without such a gadget.

I was fitted for a machine within a few days. BiPap Pro2 and a snap-in base with a water tank- a humidifier. Several masks were tried on but none fit the contours of my face. I asked if there was a company that took a mold of your face and customized a face mask, but I was told there wasn't (there should be one in my opinion....maybe a good business for someone). Anyway, life as I knew it was about to be over. Edit here: Mask I ended up with and still use is the Ultra Mirage full face mask with headgear.

I struggled with the machine for weeks. Pressure was set to 19/15. It was intolerable. I would wake up in the middle of the night gagging and feeling like I would throw up...heavy belching and lot's of gas the other direction too. Pressure was lowered on my insistence. Still it was 17/15 and intolerable...but I stuck with it, often throwing the mask off in the middle of the night just to be told to either put the mask on or go to the other room to sleep by my wife. I asked for another study.

The Dr. did not want to lower my pressure although I was at 95% oxygen saturation level with these numbers. He said he was afraid that it would fall below 90% if he lowered it and that I should just get used to the pressure. He offered "beeno?" pill before sleep to deal with the gas in my stomach. I struggled for a few more weeks but had the same experience and asked for another sleep study.

Finally, the pressure was lowered to 15/13 and oxygen saturation was at 92-3%...doctor wanted to raise the air level back up to 17, but I refused.
Anyway, long story short, I struggled with the machine and the mask for 6 months. Finally by about March of this year I was able to fall asleep with the BiPap machine, sleep through the night and feel fine the next day. Actually, until then I was having the worst sleep in my life (with or without snoring), but now I was feeling like my old self again and my wife wasn't complaining about my snoring.

So, how has it been since then? Fine really, until this summer when school let out for a few months (I'm a high school principal). I guess my wake/sleep schedule changed. Also, I decided to try to become healthier. I cut back on my smoking (not completely quit yet) and have been dieting sensibly trying to lose some weight (maybe I've lost 10 lbs?). Don't know if this is the reason, but I've gotten the gas back...nothing else has changed. I now wake up 3 or 4 times in the middle of the night belching loudly and have a stomach ache. When I wake up in the morning, I have severe gas...and my bowel movements are not good...very irregular and soft. Not only that, the mask seems to not only give me indentations on the side of my face (I was used to that....usually clears up by 10-11AM) but the nose piece rides on the bridge of my nose and has caused bruising and pain.

I don't want to start back to school next week in this state. I guess I need to call my Dr. and see what the matter is, but if anyone here would suggest anything, I would appreciate it.

You may want to provide the group with more detail about the mask you use in order to get more detailed suggestions.

Your health initiative may be helping with your obstructive apnea and you may need a pressure adjustment. I'm sure others with more experience will chime in here shortly.

Keep workin at it ...

- roberto

Thanks...just found it and updated my signature...will also edit my original post: Ultra Mirage full face mask with headgear.

Your GI pains and gassy feeling (and passing) are a condition caleld aerophagia. It emans that you are literally swallowing air because of the air pressure.

Bi-level PAP is usually the sloution for this at higher pressures. You may want to explore with your sleep doc the prospect of lowering your EPAP, while keeping your IPAP where he is comfortable to maintain your O2 sats.

Many with aerophagia have reported improvements using a new full-face mask called the Hybrid, and you might want to give that a try.

Finally, Respironics makes an auto-titrating bi-level PAP called the BiPap Auto w/Bi-flex that is THE stte-of-the-art in current bi-level therapy. It'll automatically adjust to the LOWEST pressures that you require throughout the night tto keep your airways patent. You might want to explore that.

Finally, I say this as a 35 year, now ex-smoker. STOP SMOKING!!!! Otherwise, you may wake up dead one morning.

Cheers!

Chuck

Badger,

I think you would be an excellent candidate for an Auto Bipap. Given the fact that your pressure needs change depending on whether you are sleeping on your back or side, you need a machine that can accommodate your varied pressure needs during the night.

Also, the EPAP seems to high to me. I think a lot of people would find it hard to exhale against that kind of pressure. Most people need at least 8 CM H20 on EPAP to keep from feeling like they are suffocating. So, say it was set to 8 [with biflex that would give you even some more relief], you might feel much more comfortable.

Lowell

Thanks Lowell, Chuck and Reberto...I've tried to get my Doc to lower the pressures...will try again. Maybe he'll do an at-home study for me this time, or maybe just taking the card in to get read will do it. I do appreciate your input here. Btw, my name is David (long story on the Badger name...dates back to when I was 12).

I do believe in having fun in life...so check this out- just found it. Ignore the video's past the first one:
http://www.vmix.com/viewVideo.php?ID=38 ... controller

The difference between your IPAP and EPAP seems WAY too low if you are having gas problems. The purpose of a bipap machine is to have lower exhale pressure, but yours is set at the minimum difference (Since 2 cm difference is the minimum difference for my auto bipap, I am guessing that it is the minimum for the bipap pro also).

Basically, they gave you a machine that could help you with this problem, and then they set it where it is no help at all!

While you might want to talk to the doc about changing your pressure settings, you also might have the nerve to change it yourself. Just make small adjustments at a time. If I was having this problem, I would start with a change to 15/11 (same IPAP, lower EPAP by 2 cm).

To reassure yourself, see this article about titrating your own pressure:
http://ajrccm.atsjournals.org/cgi/conte ... /167/5/716

If there is any way for you to get an auto bipap with biflex, that would also help. However, if you are stuck with this machine for financial/insurance reasons, you can probably tweak the settings to make it work better for your new, healthier self.


Just my personal non-medical opinion, take it or leave it,

Moogy

Thank you Moogy. I'm not sure how to set the machine myself (they've kept that a secret from me), but I'll try looking at the link you provided and go from there. I'd have to check with the insurance at this point. I got the machine as a "rent-to-own." Somehow the insurance company wants to make sure you're going to stick with things before they actually buy it. I think it's paid off next month, so I may have to start all over if I get the other machine. Never-the-less, I'll talk to my Doc. about it.

- David

viewtopic.php?t=7152&highlight=bipap+clinician+menu

See this link for general instructions for accessing the clinician's menu on Respironics machines.

Moogy

Thanks again...you are a real Godsend!
David

Badger, you might want to investigate a nasal mask or nasal pillows. Nasal pillows do not rest on the bridge of the nose and neither kind cover the mouth.
(If you are a mouth breather, then they generally do not work well, but if you do not mouth breathe they are much lighter and less instrusive on your face.) As was mentioned earlier, I would definitely look into a lower exhalation pressure. If you can train also yourself to sleep on your side, you should notice your pressure needs go down, and the aerophagia improve. An auto bi-pap seems like a definite possibility.

Losing weight and cutting back/stopping smoking are both big steps forward for your general health. Do your best to stick with the xpap therapy.....that, too, is a big step forward towards a longer life and better health.

Good luck!

Thanks...I am a mouth breather so the nose only method is out of the question for me. The Hybrid however looks like it might be my best solution, that and lower exhale pressure. I'll talk about both of these with my provider.

Badger wrote:Thanks...I am a mouth breather so the nose only method is out of the question for me. The Hybrid however looks like it might be my best solution, that and lower exhale pressure. I'll talk about both of these with my provider.

I'll bet mouth-breathing is aggravating your aerophagia (swallowing air). Sorry to say, I dunno a good solution to this --

By the way, your picture cracks me up! Can we call you "Abe?"

Minerva

Sure, call me whatever you want (I answer to most anything)...searched long and hard for that picture then had to use paintshop to get it to an acceptable level of pixels! LOL