Hi, I'm new.

[Sablerose]

Hi, I'm new to the world of CPAP and am happy to find a community of folks who share information and encouragement.

I'm 40 years old and overweight, and have always, always been a snorer. The last couple of months I was getting progressively sleepier during the day and prone to bouts of just random falling asleep, being grumpy, tired, etc. In conjunction with a diagnosis of hypothyroid, I also underwent a sleep study and the doctor classified my apnea as severe, saying I woke up 100 times in 4.5 hours with apneas of up to 30 seconds and 50% blood oxygen levels. The same day they got me my machine.

I've been on the machine now for a very, very short time -- less than a week. I have a Respironics System One with humidifier and full face mask at 15.0 cm/H20. It's definitely taking some getting used to. It feels like gale force winds when I first try to settle in for the night.

With my husband's help I think we've found decent mask placement, in that I no longer have irritation on the bridge of my nose. I've found myself waking up a few times a night, and I am reckoning it's because of the blasted contraption on my face. It's like I have minor claustrophobic moments. I find myself much less sleepy during the day but still quite fatigued, which they tell me could be due to my hypothyroid and I'm waiting for the medicine for that to kick in.

My husband says in general, only about four days in, that I am much nicer to deal with. That's a benefit, for sure.

I just want to feel better. When I was ignorant about my apnea I was annoyed at how drowsy I was. Now that I understand the severity of it, I'm almost afraid to sleep. I have a lot of tension when settling in, getting my mask on, etc. Will it leak? Will I wake up? Will I still apnea? Will I ever be used to it?

I guess I'm in the combination honeymoon and horror movie phase of adjustment. I hope to get a lot of positive reinforcement from reading here and arming myself with the tools to be successful.

Thanks!

[Irene P.]

Hi, Sablerose,

Welcome to the forum, and thanks for sharing. It sounds like you're doing well for being so new. Pressure of 15 is pretty high, so be sure to ask questions here or see your doctor if you have problems adjusting. Good luck.

Irene

[Emilia]

Welcome to the forum, Sablerose! Please go up to the User Control Panel and then Edit Profile....and then Edit Equipment. Choose your machine, humidifier, and mask from the drop down menus and then choose to show those choices in text, not in pictures. This way, we will all know what you are using and those with the same equipment will be able to offer you advice and help with problems.

Please take some time to read the wiki at the top of the page....click on the yellow lightbulb. Continue to read, read, read the forum threads and ask questions. You will find that the members of this forum are more than happy to help you acclimate to this therapy. Educating yourself will go a long way in empowering yourself and making your therapy successful.

If you do not have the software for your machine, it would be wise to consider getting that so you can monitor your sleep events and see how therapy is going for you. Having a fully data capable machine is very important for you to be pro-active with this.

Best of luck, and keep us posted on your progress.

[JeffH]

Hi Sablerose. I'm just down the road from you in Pauls Valley. Been on the hose around 12 years now. Believe me, there will come a day when you can't imagine sleeping without the mask. Hang in there, it gets better.

Good luck

JeffH

[elena88]

Hi, I'm new to the world of CPAP and am happy to find a community of folks who share information and encouragement.

I'm 40 years old and overweight, and have always, always been a snorer. The last couple of months I was getting progressively sleepier during the day and prone to bouts of just random falling asleep, being grumpy, tired, etc. In conjunction with a diagnosis of hypothyroid, I also underwent a sleep study and the doctor classified my apnea as severe, saying I woke up 100 times in 4.5 hours with apneas of up to 30 seconds and 50% blood oxygen levels. The same day they got me my machine.

I've been on the machine now for a very, very short time -- less than a week. I have a Respironics System One with humidifier and full face mask at 15.0 cm/H20. It's definitely taking some getting used to. It feels like gale force winds when I first try to settle in for the night.

With my husband's help I think we've found decent mask placement, in that I no longer have irritation on the bridge of my nose. I've found myself waking up a few times a night, and I am reckoning it's because of the blasted contraption on my face. It's like I have minor claustrophobic moments. I find myself much less sleepy during the day but still quite fatigued, which they tell me could be due to my hypothyroid and I'm waiting for the medicine for that to kick in.

My husband says in general, only about four days in, that I am much nicer to deal with. That's a benefit, for sure.

I just want to feel better. When I was ignorant about my apnea I was annoyed at how drowsy I was. Now that I understand the severity of it, I'm almost afraid to sleep. I have a lot of tension when settling in, getting my mask on, etc. Will it leak? Will I wake up? Will I still apnea? Will I ever be used to it?

I guess I'm in the combination honeymoon and horror movie phase of adjustment. I hope to get a lot of positive reinforcement from reading here and arming myself with the tools to be successful.

Thanks!

Hi Sablerose!

Welcome to the forum, its so fantastic you have been diagnosed.. as so many health problems are caused by OSA, especially severe cases like yours.
It is extremely important that you have a machine that shows your complete therapy data so you can download it yourself, and one that has
some sort of expiration relief feature, as your pressure at fifteen is pretty high.. Do you know if your machine is set to give you expiration relief?
This would be a very important feature for you to be using on your machine with that pressure.
Please know that this takes time to adjust too, but Im glad your husband noticed that your mood seemed to be improving.. Did your insurance pay
for your machine one hundred percent? Did they tell you how long you have to return your machine and trade it in, if you dont like it?
Did your doctor prescribe this particular machine, or did the equipment provider pick it for you? How is your relationship with your sleep doctor?
The reason Im asking, is because if you have trouble with this after a three weeks, and cant deal exhaling against that pressure, you may need
a different machine.. so keep that in mind, you DO have options.. this therapy is all up to you, so read everything you can asap..
I will tell you there is a bilevel machine that lowers the exhale pressure, if you cant handle it after a few weeks, talk to your doctor about
a bilevel machine.. Also know, that most equipment providers will not take a machine back after thirty days, unless you are renting it.. so do you
know if you are renting this or are you buying it? YOu have a severe case, and will need to stay on this treatment, so it is very important to make
it is comfortable for you as possible, and that should be your doctor's goal too.. I hope it is..

[Emilia]

Okay.... now that you have your equipment listed we know you have an Auto with Flex.... but you appear to be using it in CPAP mode w/Cflex at a pressure of 15. Since that pressure if very high, you could move to Auto mode and set a range of 12 - 17 with A/flex. If you don't have the clinician's manual for your machine to get under the hood to change things, you can go to the link below and scroll down to the bottom where you will see your machine listed. You will need to ask the admin via email to send you the link to download the manual. http://www.apneaboard.com/CPAP%20Adjustment.htm

If you get the software, you will be able to monitor your therapy much more efficiently. You can purchase the software for your machine at our host's site: https://www.cpap.com/productpage/respir ... eader.html

If you have problems changing settings, just ask and someone will be by to answer your questions.....

[M.D.Hosehead]

Hang in there, Sable!

Some folks seem to take to cpap the first night and feel great thereafter, but those people seem to be a minority. Usually it takes a while to get used to the strangeness of it and some people don't find the right mask at first.

It took me a couple of months to settle in to treatment.

[blueboxer]

Hi, Sablerose, and welcome.

I had my sleep study in Nov. 2005 and titration in January - a bitterly cold snowy night when I barely made it to the sleep lab. But oh! - was that study convincing. When I got up from my night in the mask I felt better than I had for a couple of decades. and couldn't get a machine fast enough.

I'm not sure the basic Fisher & Pakel machine recommended for my was the world's best, but apparently my condition is very simple and straightforward and fancy software isn't needed. I run at the common 8 psi. I use a full-face mask - constricted nasal passages have left me a semi- mouth breather all my life. And no one told me the subtleties of adjusting the mask, like balancing the straps to make the mask bear on proper areas of the face, or that sometimes the seal is improved by loosening the straps, not tightening them further. I had a Respironics mask that was stiff, heavy, fragile and uncomfortable.

Recently I discovered cpap.com had a new mask, the ProbasicsZZZ from Germany. I tried it. The mask is soft and light, and the seal is replaceable separately (nice cost saving). It disassembles into seal, frame and hose assembly. I am delighted with it, except that the seal seems to get too soft and floppy within a very few months, and the headgear seems to stretch and not recover, just stays stretched. This results in the reappearance of leakage issues soon after you have them licked. I am still struggling with this. Of course your insurer may pay for new masks more frequently than mine does.

I am greatly slowed down by my artificial hip and broken back, which limit my mobility. But I do have the energy to exploit the movement I do have, I can drive without fear of falling asleep, and despite my 80-year accumulation of ailments still go places and do things and can enjoy it.

My take is that without my machine, something is going to catch up with me soon and unpleasantly, but for the moment I am warding it off and working well. Yes, it's a hassle - but it sure is better than any alternative.

[Sablerose]

Hi all, and thank you. Let me see if I can answer some questions or clarify some stuff.

There was not an option to pick a REMstar Auto A-Flex but that is what my user's manual says I have, the c-flex was the closest thing. So I put in my comments that it's actually an A-flex. I don't know what A-flex, C-flex, or any of that means except that I think I might understand the 'flex' to be as in, does it decrease the pressure some when I exhale...?

This is the out of the box prescription and I see my sleep doc in 45 days. New doctor. I like her very much. 3 doctors were in concurrence to get the sleep study and my doctor is very proactive and kind and helpful. At least she has been in the all of 20 minutes I've seen her. This has all happened really fast. I like my primary doc and my sleep doc and I really liked the technician who did my test.

My husband is active duty Air Force, and the folks who supplied my mask said the insurance through the USAF is very good about the CPAP equipment as they seem to see it as not only treating the apnea, but preventing other complications down the road. I will know soon though, if I get a bill for part of the machine or equipment. I did not have to pay any portion up front. I was told I am buying-after-30-days and that my hoses and masks and equipment are on a six-month replacement.

I have high hopes that when I get my thyroid under control and now that I should be able to lose some weight with both that and the machine, that as I lose weight I might be able to adjust my pressure down. This is a new development, I might have had apnea before but it was never EVER this bad and it seems to correspond to both my hypothyroid tendency, which is new since my last physical a year ago, and my short term weight gain which could have been due to the thyroid. So I'm sort of praying that if I can get on a really good weight loss run, perhaps my prescription can be altered although I'm trying to come to terms with the fact that I'm gonna be on the machine forever.

I have a full face mask and I am assuming they did that because of the pressure. I don't know if nose masks work at higher pressures or if your mouth opens or what, I have read here about people taping their mouths (closed?) which is probably something I'd have to do if I went to a nose mask.

I just want to be okay. If I were being really honest I'd say when I stop in the middle of the day and think about having to sleep with the machine it makes me cry. But I feel better with it than without it. At least I can tell I'm sleeping.

-Rose

[elena88]

thanks rose for all the information you gave us..

right now I just want to address this:

I just want to be okay. If I were being really honest I'd say when I stop in the middle of the day and think about having to sleep with the machine it makes me cry. But I feel better with it than without it. At least I can tell I'm sleeping.

I know this is a huge shock, and the fact that it happened so fast does not make it any easier.. I the fact that you want to stop and cry when
you think about it, well, you just got told you have to wear this thing for the rest of your life.. thats pretty tough.

I felt that way too, but someone told me, " its just air" of all the things we would have to have as a treatment, its just air.. I hate medications..
so, when I thought about it, its not so bad.. many people feel once they get used to it, their cpap is their new "best friend"

Its like someone you met you dont think you like, but once you get to know them, you find out how much you really like them.. first impressions
with cpaps are not always the greatest.. There is a huge learning curve for some folks, and it might take a few weeks or months to get
used to the pressure.. you truly need some "flex" with that pressure of yours, and yes, that does decrease pressure on expiration..
Do check into who is going to pay for your machine, or what portion.. there are some nightmare stories of equipment companies charging insurance
five times the retail price of a machine, and patient has to pay a percentage..
READ THIS THREAD:
viewtopic/t55436/Vendor-Charges-and-Ins ... Error.html
so get informed as fast as you can, and make sure this is the machine
for YOU.. or take it back and switch it out for a machine which will be best for you.. figure this out before YOU see the doctor again, it will be over
thirty days by then.. Im not sure, but if your machine was an a flex, it would be an auto.. an auto you can run in cpap or auto mode. If you are planning
to lose weight, I would seriously make sure you have an auto machine.. an auto machine will be able to automically follow you breath by breath each
night, and give you only the pressure you need to stop events.. a straight cpap will be ONE pressure all night long....

[Janknitz]

I'm a little confused about what machine you have and whether your great coverage got you the current generation of machine (System One) or you have an older machine (Series M or even older?). Your signature says Remstar Auto C-Flex, and then under additional comments it says Remstar Auto A-Flex.

Can you look more carefully at your machine, and perhaps compare to the photos on CPAP.com to make sure of what you have? This is important because it will help us help you trouble shoot if you are having difficulties.

BUT, it sounds like you are doing great and already noticing a difference. That is important because that will keep you going when it's tough (and it will be for a while yet).

Hang in there, and anything we can do to help, just holler.

[jazzer4]

Hi Rose.
Hey girl I really understand your being scared.
I was too.
My hands would shake so bad I couldn't reassemble my mask after cleaning it. Everything is soooo hard to cope with when your sleep deprived. That will get better as you sleep better.
Like everything else in life you accept it. My dad used to say "you can get used to hangin' if you hang long enough".

Nine months in and ALL IS WELL for me now, and it will be for you too.

You'll get there just read, read and read everything on this forum. Then, you'll be very prepared and informed.

Good luck.
Susan

[tony72]

with the bridge of nose irritation try this:buy band-aids that are 3/4 of an inch long and use it like those nasal things athletes spread across their noses.

[OKCCowboy]

Howdy Sablerose,

I am just a bit West of you in OKC. I went on my CPAP 5 years ago and was wondering if I would be able to deal with it. Like the others have said, you will get used to it and you will wonder how you ever did without it. You will also find that once you are used to it, you won't want to sleep without it. In fact, I can't anymore. Once I start snoring, I wake myself up.

Give it a little time and accept that it is a good thing that you are on the machine and that you will start feeling better soon.

John

[lbw]

Welcome,
I have had my machine for 4 months now. The major fatigue is gone now. Only have a nap the occaisional weekend. As the others have already mentioned it may take a little while to get used to the cpap. Now I cannot even imagine a night without it.

Good luck.