Replies to This Discussion

Permalink Reply by Banyon on March 2, 2010 at 10:21am

Smitty said:

Thanks Mary Z, 99, SleepyCarol, jeff, Amy and Banyon -- you're right...attitude is everything and mine needed some adjusting...so glad I came on and wrote for help and support.

Allow me to contradict you on this point. Attitude is not everything – if you have the wrong machine, the wrong mask and the wrong machine settings, Superwoman’s attitude won’t make you successful with CPAP. Don’t go on a guilt trip because you think you have the wrong attitude.


Smitty said:

In answer to Banyon, my machine is made by Phillips Respironics, Remstar Pro C-Flex +. Its set at 18 for Therapy and I was prescribed 18. I pushed on info and found an AHI # for 7 days 7.1 and for 30 days it was 6.8. What does that mean? The mask is a Respironics ComfortGel nasal mask. …. The equipment is all paid for by my health insurance and it is a 3-month rental for now.

IMO, you were prescribed the wrong machine. 18 cm is a very high pressure and the good sleep doctors will prescribe a bi-level machine for anyone needing pressure over 12 cm or so. This issue needs to be absolutely resolved before the ninety-day rental period expires and the insurance company purchases the machine. Should they do this it could be difficult to get them to pay for a second machine. So I would approach the doctor (assertively if necessary – don’t take “no” for an answer) for a new script for a bi-level machine (BiPap). A bi-level machine will drop the pressure well below 18 cm on exhale, which in theory makes it easier to exhale.

Also, all current models of bi-level machines are “fully data-capable” and have an option for software which is critical to monitoring your therapy and making appropriate adjustments. You likely will have to obtain the software on your own as I am not aware of insurance ever paying for it.

Forget about attitude – it is actions that matter at this point - start working on getting a different machine.

After you get the appropriate machine and have some data to look at, we should talk about the appropriate mask.

Here is hoping that you have an enlightened doctor,

Permalink Reply by Mary Z on March 2, 2010 at 10:32am

Well said Banyon. I certainly did not even consider the valid points you bring up. A person could certainly be set up for failure with the wrong equipment. I agree- no guilt or beating oneself up will help, but the steps you suggest may well lead to success.
Thanks,
Mary Z.

Permalink Reply by Banyon on March 2, 2010 at 10:45am

I wonder why a %$#^&$ sleep lab would not titrate you for bi-level when they see you are requiring such high pressure.

This industry has a long way to go. I hope someone outside the industry soon invents a better solution than CPAP so we can fire all the sleep labs.

Permalink Reply by Brian Katzung on March 2, 2010 at 10:49am

Many people have already posted on several of your issues, but I haven't seen much comment on this one, so I'm going to focus on this one:

Smitty said:Branson, I asked my husband if the mask resolved the loud snoring. He said I still snore, its just a muffled snore now.

If you are still snoring consistently, then something is definitely not right.

Your mask leaks can certainly be a contributing factor, but there may be other issues that need to be resolved here too.

It might be that your prescribed pressure is wrong, or you may need an APAP machine to adjust to different positions and other factors as you sleep.

I'm wondering if you should be considering another sleep study, perhaps somewhere else from your first one.

Do any of our resident professionals want to weigh in on this one?

Also, regarding masks, you may want to investigate nasal-oral hybrid masks as an alternative to full face masks. They can still leak, but are less likely to blow in your eyes. On the other hand, I'm not sure how they will do at 18 cm.

Permalink Reply by Lynette on March 2, 2010 at 10:53am

Smitty,

I have used my CPAP for almost 3 years and I have yet to sleep through the night without it waking me up several times. I, too, quit CPAP for a short period of time. However, I realized that what I thought was uninterrupted sleep really wasn't, the apnea just wasn't waking me to a conscious state. And when I reviewed all the nasty other problems sleep apnea can cause/contribute to, I decided I needed to power through it.

I have been compliant with my mask for over a year now (I should say "masks," it took several to find one I semi-liked - I finally settled on the Liberty hybrid mask), but I can definitely tell a difference if I have a night where I can't use my machine. I may not get as much "uninterrupted" sleep, but the quality of sleep is SO much better. And I have stayed healthier this past year, which I attribute directly to CPAP.

As far as girlfriend weekend trips, I was embarrassed to take my CPAP machine the first time or two. Then I figured, hey, it's my health..."love me, love my CPAP." I tell them in advance that if they hear a loud swish of air, don't be alarmed, it's a little air leak and will end in a few seconds. I always carry a fan with me to help drown out the sound of the machine, and the occasional air swoosh is less noise than my snoring! At bedtime I tell them it's time for me to put on my Darth Vadar mask, laugh with them at how ridiculous I look in it (of course, ham it up a bit) and then head off to dreamland. I figure, if my CPAP machine rouses them during the night....well, welcome to my world! :-D

Just remember you are NOT alone...we've ALL been there. CPAP is a love/hate relationship. I don't know of a single CPAP user who hasn't wanted to throw the machine out the window more than once. I've read of several throwing the mask across the room during the night. :-) I've never done it, but certainly felt like it.

I think you are wise in your decision to revisit your doctor. Finding the right mask - or even machine - is a trial and error process, but it WILL get better eventually. And it's great that your insurance is covering it (every bit of mine has been out of pocket, including the sleep study). Hopefully that will make it easier for you to find the right equipment combo faster. So hang in there, Smitty....we're rooting for you, girl!! Keep us posted on how you are doing.

Lynette

Permalink Reply by Smitty on March 2, 2010 at 11:34am

Thanks for covering this Brian. I was hoping someone would comment on it. I thought it was odd enough to mention.

Brian Katzung said:

Many people have already posted on several of your issues, but I haven't seen much comment on this one, so I'm going to focus on this one:

Smitty said:Branson, I asked my husband if the mask resolved the loud snoring. He said I still snore, its just a muffled snore now.

If you are still snoring consistently, then something is definitely not right.

Your mask leaks can certainly be a contributing factor, but there may be other issues that need to be resolved here too.

It might be that your prescribed pressure is wrong, or you may need an APAP machine to adjust to different positions and other factors as you sleep.

I'm wondering if you should be considering another sleep study, perhaps somewhere else from your first one.

Do any of our resident professionals want to weigh in on this one?

Also, regarding masks, you may want to investigate nasal-oral hybrid masks as an alternative to full face masks. They can still leak, but are less likely to blow in your eyes. On the other hand, I'm not sure how they will do at 18 cm.

Permalink Reply by Eric James Bennett on March 2, 2010 at 12:09pm

Smitty,

I have been at it for over a year and have probably slept all night one night.. I have been through the whole gammet of equipment. I went back to the doctor yesterday and he prescribed a full face mask for me.. I am in anticipation till it gets here. I am sure that most people would probably freak out wearing one but, I was a commercial diver and a scuba instructor for years and had become used to having my face covered up. My point is that there is almost an infinite number of options. Also start thinking more positive of yourself.. You are a unique individual someones daughter and most important a mother. I have been the brunt of a lot of jokes about my snoring as I do a lot of camping and out of town work. Since I have had the machine I have taken everywhere. Even though I haven't been able to wear it all night it has helped and no ne jokes about my snoring anymore.. Keep trying your life may depend on it..

Stephane Bergeron said:

Hi Smitty,

So sorry to read about your struggle. I'm a newbie at CPAP myself but it seems I'm having a much easier time adjusting than you are. I was worried before starting my therapy because I had been prescribed a pressure of 15 and I feared I wouldn't be able to deal with that. I have been titrated at home back in November '09 and I had a horrible mask that leaked like crazy and felt that prescription was artificially high because of that.

Like you, I had done a lot of reading before starting so that is why I insisted on getting an Auto-CPAP machine so my therapy could adjust to my "real" pressure needs. My doctor agreed with me and prescribed one and my pressure never went past 11 for nearly a month (and that was a very occasional occurence). My average pressure is 7 or 8 which I can tolerate very well and my AHI numbers are great.

Just mentioning that even though I realize your sleep studies were done in a much more controlled environment than mine and 18 may be the pressure you really need. But then again, maybe not. Others here that are more knowledgeable have suggested a bipap, I use the new Philips Respironics System One Remstar Auto-CPAP machine set from 6 to 18. It is very easy to breathe with it and it is a fully data capable machine which means I can see exactly how my night went and track my therapy and the small pressure changes I made to my machine (I started at 4 to 18 and increased the low pressure to 6).

In any case, before resorting to other measures, I would stick with PAP therapy and try either a BiPap or Auto-CPAP machine. Your doc and the experts here are in better position to suggest the best option for you than I am but I know I could never go back to sleeping as poorly as I had for years before starting CPAP...

Good luck and hang in there!

Permalink Reply by Linda on March 2, 2010 at 3:23pm

I think you level is way to high I go from a 1 to a 2 . try that and see if it is any better . I too hated the mask , but now I feel so better when I use it . Stick with it , the benefits un weight the health issues .
Linda

Permalink Reply by Melinda Hertel on March 2, 2010 at 3:25pm

Hi there. I am wondering if you have a copy of your sleep study...not just the dictated report but the actual numbers and graphs? It's possible that you need a pressure of 18, but I can't tell you how many times a patient has come to see the doctor I work for because he/she is not tolerating CPAP and he finds that the CPAP study was not done with the correct technique. The study shows a best pressure of 18cm. He lowers the pressure and the patient tolerates CPAP while the apneas are still eliminated at the lower pressure. If I could see a copy of what was done at the sleep lab, I could maybe help you understand what you need to talk to your doctor about.

Permalink Reply by Raymond J. Young, Jr. on March 2, 2010 at 4:26pm

I don't know of anyone who has not had their problems with cpap. you just have to make up you mind to do it. It took me over a year to get used to it. Remember that if you do not find a cure you increase your chances of death from heart attack or stroke by30 to 40%. You love your family and want to grow old watching all their progress, right.
\
Surgery is your next choice. It is effective only about 50% of the time. It too requires some adjustments, and causes permanent chances in body. Cpap does not disfigure and is 100 % effective once you work through these issues. Jack

Permalink Reply by RockRpsgt on March 2, 2010 at 5:40pm

Really Banyon? Are you having a bad day? Hug it out man, hug it out.

Banyon said:

I wonder why a %$#^&$ sleep lab would not titrate you for bi-level when they see you are requiring such high pressure.

This industry has a long way to go. I hope someone outside the industry soon invents a better solution than CPAP so we can fire all the sleep labs.

Permalink Reply by RockRpsgt on March 3, 2010 at 9:20am

Smitty I can not in good conscience talk of whether or not you were over titrated. Without being the one to perform the study I do not know what that tech saw. The pressure that you are on is most likely to high for the nasal mask that you are using. I also agree with an earlier statement about mouth breathing. You might want to try another nasal mask like the Resmed Micro with a chin strap:

http://www.resmed.com/us/products/mirage_micro/mirage-micro.html?nc...

A Full Face Mask (FFM) is a nice back up, and works well at your prescribed pressure.

http://www.resmed.com/us/products/mirage_quattro/mirage-quattro.htm...

Do not let the mob mentality persuade you into believing that your sleep practitioners were idiots without first doing everything that you can to fix your current situation. They could have been right.

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