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Newbie. Not sure if I'll be using a CPAP long term
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alby_c Offline

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Machine: resmed s9 autoset
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Sex: Male
Location: Brisbane, Australia

Post: #11
RE: Newbie. Not sure if I'll be using a CPAP long term
If you really think the first sleep study was botched, then get another one done by another provider - a second opinion is a great thing. I would do it sooner than later. Your untreated AHI is high. If they are right you do not want to muck around as it will hurt you. You need to get it settled in your mind.

CPAP is a treatment, not a cure i.e. it will not make the underlying apnea go away or decrease, it just treats the symptoms (blockages while you sleep) which is why if you have apnea, it is on the mask for life. Do a search on the board for discussions about all the various alternatives if you want but it does not really get better. The moment you stop the treatment, the issue is back in full force. Depressing - true, but its best not to delude yourself.

I was one of the lucky ones that took to it easy, but then it was finally a reasonable explanation of all the issues I was having so it was easy for me to embrace it. I know the difference it has made for me and my wife

But regardless of whether you have a dramatic life improvement or not, as noted before, APNEA should not be ignored it as it does have a very nasty sting in its tail.
07-28-2015 10:56 PM
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under pressure Offline

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Sex: Male
Location: Colorado

Post: #12
RE: Newbie. Not sure if I'll be using a CPAP long term
I was in the same boat years ago, I felt like I got less sleep on the CPAP than I did without it so I quit using it after about a month; four years later I had severe A-Fib and none of the A-Fib drugs worked so my next step was heart surgery, don't make the same mistake that I did. It takes getting used to, and the secret is discovering the best mask for yourself, I tried about ten different masks before finding the right one for my particular face and sleeping positions.

I am in Colorado too, the machine you have will automatically compensate for altitudes up to 8,500 feet, if I remember the figure from the manual correctly......your excursions to higher altitudes are close enough that it should not be a problem for you, or you can compensate by increasing your pressure settings slightly, but it shouldn't be a big issue at any rate.

If you download and use Sleepyhead the machine and software will show you if you are having Apneas, Hypopneas, Flow Limitations, and Vibratory Snore problems. If you don't see those events to any degree on the data then you can try lowering your pressure and in this way kind of do your own home titration study to determine if you really need the CPAP. I am able to keep my AHI number below 2 most of the time with pressures in the 13 cm area, if I were to lower the pressure settings the result would be a marked increase in my AHI number and it would eventually end up well above the magic number of 5 which clues me into the fact that I must continue using the CPAP or suffer the consequences.

I have now been using the machine for years and would not ever consider not using it, you'll get used to it over time to the point that you can't sleep without it!

Make a dedicated effort to stick with it, find the best mask for you, and monitor the software to keep track and fine tune your therapy settings.......avoid all the pit falls of untreated Sleep Apnea.
07-29-2015 12:02 AM
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sonicboom Offline

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Location: Washington

Post: #13
RE: Newbie. Not sure if I'll be using a CPAP long term
I, like many here, too avoided the issue for years. Slowly, little symptoms crept in as I aged - AM headaches, inability to lose weight, increasing blood pressure, daytime sleepiness, falling asleep while driving. While I was no fan of CPAP I was definitely not a fan of A-fib, diabetes, or heart surgery, so I joined the CPAP crowd. I feel fantastic now even at low pressures. Everyone here can help and encourage you. I have found all the answers I need from the people here. If you post your data from sleepyhead for one night folks here will help you interpret it to get you started. Good luck and stick with it. Your family and friends will appreciate that you did.

Coffee
07-29-2015 01:47 AM
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kaiasgram Offline

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Location: Northern California

Post: #14
RE: Newbie. Not sure if I'll be using a CPAP long term
Hi mogulman,

I'm having a little trouble understanding the logic you're using. You have high blood pressure and you're ok with taking medication for it. I'm guessing that you didn't have symptoms with the high blood pressure, yet you took it seriously enough to accept medication for it.

Now you've been diagnosed with severe sleep apnea and you're debating whether to treat it because you don't think it's affecting you (though high blood pressure, chronic cough and overweight have all been associated with untreated sleep apnea in research). People don't question the seriousness of high blood pressure but awareness about the seriousness of sleep apnea has such a long way to go.

As for questioning the sleep study -- the diagnostic portion of the study (before they put you on CPAP) is based on the data being recorded by all that equipment. It's not a subjective judgment on the part of the technologist running the study. It would have to be a massive technological failure to produce a false positive result like 70 AHI. Even if you only had half the AHI that the report indicates you would still be in the severe category with your apnea.

I think you would be wise to take this seriously and be earnest about accepting this treatment. I understand it's tempting to be casual about it since you don't currently have symptoms of excessive sleepiness, and right now the machine doesn't seem to be adding much benefit to your quality of life. On the other hand, symptoms are one thing -- clinical signs are another and you have some clinical signs, most notably the high blood pressure. BTW, it's not unusual to hear people report that when they got stabilized on CPAP they were able to get off their blood pressure medications.

You asked for thoughts and advice, and my advice is to stop thinking of the CPAP machine as a consumer item that you can return if you don't like it. Assume that like untreated high blood pressure, untreated sleep apnea can be doing lots of damage along the way and though you "feel fine" right now, the damage could catch up with you in some disabling and irreversible ways down the road.

Stepping off the soap box now -- but really, do take care of yourself.
(This post was last modified: 07-29-2015 02:14 AM by kaiasgram.)
07-29-2015 02:11 AM
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yohanes sunaryo Offline

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Location: Jakarta & Kediri. Indonesia

Post: #15
RE: Newbie. Not sure if I'll be using a CPAP long term
Hi Mogulman, I had same experienced , new in cpap, but did not have luxurious to have a sleep study, no such facilities in my home town. But I think I got sleep apnoe since all of my fiend said I snored very loud.
Bought the same cpap like yours, using full face mask...but it made me worst, problem with leakage, could not sleep during the night, palpitating dperhaps due to high pressure as FYI I had same pressures like your, my AHI was 18-20. until finally I got the nasal pillow one.
It help a lot, my AHI was 2.7.
Try to get the sleepy head software then try to analyze your sad card with the help from friends in this forum...like I did. Hopefully you can see the difference .
07-29-2015 04:53 AM
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OpalRose Offline

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Post: #16
RE: Newbie. Not sure if I'll be using a CPAP long term
(07-28-2015 08:39 PM)mogulman Wrote:  I am a skier, about half the winter I spend up in the mountains in CO. Do CPAP machines work at 9000 Ft?

I'll try the sleepyhead software. I'm a computer geek.

I have look at the resmed myair website and the U-sleep websites for the CPAP. U-sleep is a little funky. Seems like it is made for some kind of compliance thing. The place that supplied my CPAP said that I can't have the myair info without the U-sleep.

Really the expense isn't the big thing for me. I have decent insurance and am willing to pay. I just really don't like wearing the CPap or taking meds in general. I'm willing to try though.

Hi mogulman,
What is your current AHI number, compared to the 70 AHI from the sleep study?
Download sleepyhead, and let us know your numbers.

I have a hard time understanding how you can accept being strangled 70 times an
hour, and think that you can get away with not having CPAP therapy. Start reading up on this disease, and the terrible effect it will have on your quality of life if left untreated.

If you doubt your sleep study, then have another done, since you are able to pay for it. This is not a game, it is your life. Untreated apnea will kill you one way or another! Treated apnea will give you a longer and healthier life so you can enjoy that sking you like to do. Smile

OpalRose
07-29-2015 06:59 AM
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mogulman Offline

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Post: #17
RE: Newbie. Not sure if I'll be using a CPAP long term
Ok. Thanks for the advice everyone. I think I will take it more seriously. Definitely I'll try it for at least a month. Maybe get a 2nd sleep study before I just stop using it. For now I'll just keep trying.

Last night I don't feel like I slept too well. I did sleep somewhat though. I rolled over quite a bit. I think I usually do. When I was trying to sleep on my back I felt like I kept opening my mouth. Then it would wake me up. I don't think this was happening on my side but maybe. I think maybe my nose was getting congested or something. I figured the machine would tell me something like the mask didn't fit well, but on the screen its all smiley faces with an AHI of 5.4.

Should I be trying to sleep on my back?

I guess I need to try the pillows some more.. maybe I need to go back to the wisp nose mask or get a full face mask. I think if I had to use a full face mask that would be torture.

Sorry about the rambling. I'll check out the sleepyhead software later in the week after I've done a few more nights.

Thanks for the help
07-29-2015 08:11 AM
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Sleeprider Online
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Post: #18
RE: Newbie. Not sure if I'll be using a CPAP long term
So you're at Breckenridge. It's the only place I know that you sleep above 8500 feet. The XPAP machines supposedly compensate for altitude to about 8000 feet. My experience (been doing this since 2008) is the unit feels great at altitude. Especially with humidification and a heated hose, it delivers air at pressure and temperature I find especially nice at altitude. I have never had problems with HAPE anyway. Also, in a crowded ski accommodation, the lack of snoring is a plus. You's like me much better as a house-mate with the XPAP than without.

I think you'll find Sleepyhead is much more complete and interesting than My-Air or the compliance software. U-Sleep is for your DME to track usage, and create invoices for it's services. It does nothing for you but generate text messages. Seems intrusive to privacy to me, but you can decide. http://www.resmed.com/us/en/commercial-p...sleep.html

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07-29-2015 08:25 AM
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Shastzi Offline

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Post: #19
RE: Newbie. Not sure if I'll be using a CPAP long term
Hi Mogul.
Make best possible speed towards using the SleepyHead software. That will tell you right quick what is going on.
It's like getting your own private sleep study every night. (minus the brain waves)
If you're ok this machine / software will show it to you. If you are like most folks you'll need to make a few adjustments.
(stuff that the Dr isn't going to bother to go over with you)

Getting used to it is NOT FUN. Accept that. You didn't learn how to ski overnight either I'm sure. Wink
Hang in there and let your body acclimate to this therapy for at least 3-4 months.

Persist and you'll settle into a therapy that works right for you.

If you have problems adapting to this new way of breathing then post it here
and this group can help you work it out.

Best of Luck!
Sleep-well

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

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07-29-2015 09:19 AM
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PaytonA Online
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Post: #20
RE: Newbie. Not sure if I'll be using a CPAP long term
I have a question for you, mogulman, that has application to skiing and CPAP. How many face plants did you have while learning how to ski and even afterwards?? having lived less than an hours drive from 4 ski resorts in Utah, I have some experience with this. Another thing I found is that it takes a really good skier to have the worst falls.

Best Regards,

PaytonA
07-29-2015 10:58 AM
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