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Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 11:57 am
by Emilia
I did a test drive of these nasal dilators, and while I was amazed by how much more air I got breathing with them in, they didn't change my therapy. That said, they may be a good thing for you to try since you have such narrow breathing passages. These work much differently than Breathe Right strips.... https://brez.com/

Here is the review I wrote after trying them:
You could have knocked me over with a feather, yesterday, when my free sample of this product arrived after only 9 days! Usually free samples take 4 to 6 weeks to come by mail. Needless to say, I was anxious to open the package and try it out. I waited until bedtime to see if I could handle it along with my nasal pillows. First, the free sample is a set of three Brez -- one in each of the sizes, S, M, and L. They say over 70% of users opt for the M so that is the one I opened. I have to say, it is a very clever device, and when I inserted them into my nostrils, it was an instantaneous difference in breathing! They do stent open your nostrils so your nose appears quite different visually. I have a slightly deviated septum in the right side of my nose, and I noticed immediately a change in the amount of air I was getting on that side. Now, I know this is what you are wondering..... They are practically unnoticeable once in place. They don't feel like much of anything.... I have to say, this product is a winner! No discomfort at all! The next big test was using my Swift LT with these in place. Because of the way they are structured, the Brez doesn't interfere with the nasal openings at all. I put on my mask, turned on the machine and WHOA! I had clear, unobstructed air flowing into my nose like never before! I slept like a baby last night..... I may try the size S tonight to see if that works for me. The M was a good fit, but I think it was a tad large for me. We will see tonight... These are supposed to one use only, but I think they can be sanitized and reused if one is very careful.

Give it a try!

Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 12:10 pm
by archangle
cherylann wrote:If I sleep in the recliner, why would I need the CPAP? I'll be sitting up.
Sitting up will not necessarily prevent apneas.

Some people will get fewer apneas when sleeping in one position vs. another, but there are no guarantees. I definitely still get apneas when sleeping in the recliner. My CPAP machine will display them if my pressure is too low.

You might be one of the lucky few who doesn't get apneas if you sleep in a recliner, but don't count on it, even if you feel better sleeping in the recliner. You may get fewer apneas, but still have some. You might be getting the same number of apneas but just feel better because you have acid reflux when you apnea or have mucous collect in your throat when lying down.

"DME" is Durable Medical Equipment Provider. That's what the insurance calls your CPAP salesman.

It's good that you've got the S9 machine. Does it say "AutoSet" next to the power button? If so, your machine collects a lot of data that may help you figure out what's going on.

What's keeping you awake?

Posted: Mon Sep 05, 2011 12:21 pm
by archangle
Let's attack the problem of what's keeping you awake.

Once you put the full face mask (FFM) on, do you have any problem getting enough air? Apart from your normal problem of not being able to breathe through your nose. Do you ever get feeling of suffocation or not getting enough air?

When you inhale through your mouth with the mask on, do you feel like you're sucking air out of the mask faster than the machine can supply it? Put your hand over the air vents where air comes flowing out of the mask all the time. When you inhale, is there still air flowing out of these holes? If so, you know there is still pressure in the mask.

Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 5:37 pm
by cherylann
When I was using the nasal masks, I did feel like I was suffocating and not breathing. With the FFM mask, I don't feel anthing other than the air coming out the top which they told me is how I know it's working. The only time I feel air is if I shift position and leaks occur. The inability to breathe and gasping for air does not happen when I am sleeping. It's during my waking hours - and it's only been in the last few weeks that it starts as soon as I get out of bed, wanes during the day, and starts up again late afternoon. Prior to the sleep study, I had no idea I wasn't breathing at night.

Everyone tells me that difficulty breathing during the day doesn't have anything to do with the apnea, but it has gotten considerably worse since I was diagnosed and started using the machine.

Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 5:58 pm
by Pugsy
cherylann wrote:Everyone tells me that difficulty breathing during the day doesn't have anything to do with the apnea, but it has gotten considerably worse since I was diagnosed and started using the machine.
Using the machine won't make it more difficult to breathe during the day but being anxious, nervous and apprehensive sure can. This is all very scary and for some people very hard to adjust to. You have got some great advice and support here. You aren't the only one to thinks this diagnosis is the end of the world (yes, I saw your post about being single and never will have a partner now). The negatives are all too easy to spot and dwell on. If you continually look for them that is all you will ever see. There are many positives to this therapy and even this diagnosis. There are much worse things in life than sleeping with a mask and machine at night.

Do I like using this at night? No, not really but it is simply something that I have to do each and every night.
I no longer have to get up and pee 6 times in 5 hours. I no longer wake up with killer headaches. Do I feel like I did when I was 30? No, but I am 59 now and even without the diagnosis I wouldn't feel like 30 again. My body has other issues but having the OSA enables me to deal with the other issues a little better.

Oh, one other hint. I saw your comment about 4 hours and compliance and maybe losing the machine. Wear you mask and have the machine on while watching TV. It will accomplish 2 things... It records as use to meet compliance requirements (can't tell if you were awake or not) and it will help you to adjust to using the machine.

Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 6:17 pm
by Resister
My heart goes out to you--sleeping should not have to be this hard!

BUT, it does get better. It took me the better part of 2 months to actually feel like I was sleeping at night, rather than laying there awake, or maybe drifting in and out of light sleep.

I don't have any really good advice (I'm still new) but just wanted to say you must stick with it! If your apnea is severe, wearing your C-pap is important to staying alive.

Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 6:28 pm
by chunkyfrog
I just noticed there is an ongoing discussion in an epilepsy forum about a possible link between apnea and epi attacks.
Once you can get used to your equipment, no telling what benefits you could have--no promises; but it couldn't hurt.
Fight the good fight, cherylann.

Re: What am I doing wrong?

Posted: Mon Sep 05, 2011 6:34 pm
by ameriken
chunkyfrog wrote:I just noticed there is an ongoing discussion in an epilepsy forum about a possible link between apnea and epi attacks.
Once you can get used to your equipment, no telling what benefits you could have--no promises; but it couldn't hurt.
Fight the good fight, cherylann.
Can you briefly describe what the link is between apnea and epilepsy?

Re: What am I doing wrong?

Posted: Tue Sep 06, 2011 6:38 am
by SleepyT
You have gotten great advice here....and since I am not a FFM (full face mask) user...I cannot help you with that aspect of your therapy. I CAN relate to what you are going thru emotionally though. Having a medical condition that can't be cured (only treated) is a big toughie. It takes a shift in attitude for sure. And for I dare say most of us....sleep apnea often coincides with getting older....another mental shift! A double whammy! I believe it is much easier to find what is wrong with a situation than to notice what is positive with it. It seems to be human nature to find the flaws in things. Changing one's perspective is what is needed. HARD to do! I struggle with it every day. My hope is that you will embrace this therapy...indeed, even look forward to masking up! Sounds crazy, I know...and it may take a while for you to arrive at that place....but arrive you must...because if you come at it with a "I'm going to make this thing work come hell or high water....no matter what!" attitude...you won't fail! And your health will improve drastically. Find a way! Show us how you did it! Then before you know it...you will be coaching others. I wish you the best!

Re: What am I doing wrong?

Posted: Tue Sep 06, 2011 10:33 am
by robertcrrt
you havent said what your pressue was, that may be part of the problem, their are other machones-bipap or avaps that may suit you better, call your supplier and talk to their therapist

Re: What am I doing wrong?

Posted: Wed Sep 07, 2011 9:30 pm
by cherylann
robertcrrt wrote:you havent said what your pressue was, that may be part of the problem, their are other machones-bipap or avaps that may suit you better, call your supplier and talk to their therapist
When the therapist was insisting that I use the nasal mask, the pressure was at 15. I changed doctors and he determined that I needed a full face mask because I have narrow nasal passages (the sleep study report - which I just got a copy of today - stated that I should use a FFM, but the therapist apparently chose to ignore that). The new doctor also prescribed pressure that would go from 8-15 as needed and an the autoset machine. Whenver I check the pressure on the machine now, it is always around 14.

Re: What am I doing wrong?

Posted: Wed Sep 07, 2011 9:34 pm
by cherylann
Emilia wrote:I did a test drive of these nasal dilators, and while I was amazed by how much more air I got breathing with them in, they didn't change my therapy. That said, they may be a good thing for you to try since you have such narrow breathing passages. These work much differently than Breathe Right strips
[/quote]

Thanks, I will give these a try. I did try the BR strips - they did nothing for me.

Re: What am I doing wrong?

Posted: Thu Sep 08, 2011 7:18 am
by Lizistired
Emilia, Thanks for reposting your review of the Brez. I hadn't seen it. I had ordered the sample but because of the connector band, had not thought about wearing them with my pillows. They have been in a drawer... So I tried them last night.
There is a big difference. I have always thought that most of my restriction was in my nose, but you can't tell a sleep dr that.
I did have minor leakage around the band at times, but not as much as when I open my mouth, which I didn't do last night.
I'm going to wear them some today to get used to the feeling and try again tonight with the oximeter on for comparison.