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Introduce Yourself!

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AgreeableTurquoiseKoala6149 +0 points · almost 9 years ago

I have had my machine since Dec. of 1997. I have not slept a night without it since because the rewards are way to great. Before using my machine I had chest pains so bad that I would have to pull off the road while driving and wait for the pain to go away. I had many other symptoms, and everything went away after using my machine regularly. My first setting was 7.5 and a few years ago my wife told me that I was snoring while using my machine. It is amazing how long it took me to check this out. I then was diagnosed with A-Fib. After about 3 years of dealing with that, I decided that I needed to check on a different machine. My heart doctor prescribed an auto machine. He now has me at 13.8 lbs. of pressure, and I have been in sinus rhythm for 4 months now. I have just one great big issue. I love my nose Nuance Pro mask, but I can't keep from leaking air through my mouth even while wearing a chin strap. I would switch to a full mask, but my events go from 1.5 to 5 events per hour with the nose Nuance Pro, to 27 when I sleep with a full mask. I have made all kinds of thing to stop the mouth leak, but I have to say that I am out of ideas. I will never sleep without my machine, but I need to get my air leak/events per hour issues solved. By the way, I feel so lucky that I am in sinus rhythm now, and I really don't know if my new machine plays any part in that. I know it did not hurt.

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DiligentApricotLeopard8586 +0 points · over 8 years ago

I tightened my straps once i laid down with my full face mask. That helped for sleeping on my right side. When i rolled to the left i got air leakage again. i.m going to try a neck roll instead of a pillow. There are special pillows just for PAP users, that will be next if this does not work.

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DanM +1 point · almost 9 years ago Sleep Enthusiast Support Team

Hi @AgreeableTurquoiseKoala6149. Happy to hear your Afib is under control and your therapy is helping control your sleep apnea. Most physicians and technologists are very happy to see events at 5 or less per hour! Sometimes mouth leak just happens, and mask leak may be present even with a full face mask. A full face mask may also change your pressure needs a bit. If you are already using a chin strap that is secure enough to hold your jaw closed without causing discomfort, then it sounds like you are probably doing the best you can. Do you know your leak level? Some leak is normal, and it is referred to as "intentional leak." As long as you are sleeping well and keeping the number of events within reason, and if the mouth leak is not causing discomfort or waking you up, it may not be bad enough to worry about. Hope this helps!

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OptimisticAmethystMink3821 +0 points · almost 9 years ago

hi I like when somebody is HAPPY with the tratment

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OptimisticAmethystMink3821 +0 points · almost 9 years ago

Hi my name is Carlos I am 45 years old...In 2005 I was diagnosed with OSA. My doctor put me in CPAP 10cm. honestly I used it for 2 weeks then stop ,I couldn't get used to it

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OptimisticAmethystMink3821 +0 points · almost 9 years ago

sorry ...anyways years go by with no health problems then in summet 2015 got very sick went to the ER and they found a enlarged heart,panic attacks, respiratory index elevated, irregular heat beats,etc....doctor did all the studie s and they got the conclusion that OSA is the reason why I am very sick.they put me in APAP 4cm - 12cm. last night was my first night with the treatment I will keep you post....I KNOW ALL THIS COULD BE PREVENTED USING THE CPAP MACHINE....PLEASE DON'T STOP THE CPAP TREATMENT....

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AmusingVioletOstrich1800 +0 points · almost 9 years ago

Hi - 63 years old, diagnosed 12/15, been on CPAP just over 2 months. I am very, very frustrated. I want this to work; I know I need it. If I could get any mask to work for more than 2 nights in a row without leaks (blowing air into my eyes or farting loudly at the chin and waking me up) OR get decent support from my dr or DME, I would be a very happy camper. (Sorry, had a bad night. :<) Hi!

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FriendlyPinkMeerkat4903 +0 points · over 8 years ago

Hi, I'm not sure that I have enough experience to help you because last night was my third night on CPAP, however, I think my mask is probably what is keeping me sane in this. I use the Respironics DreamWear mask. Here is a link so you can see it. http://www.cpapsupplyusa.com/Respironics-DreamWear-Nasal-CPAP-Mask-Headgear-Fitpack.aspx

944 posts
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wiredgeorge +0 points · almost 9 years ago Sleep Enthusiast

My own experience is similar to yours although I have been diagnosed and use a BIPAP for about 5 months. I quickly figured out that assistance from the professionals I PAID would be minimal and the equipment company I used would be no better. Best thing, in my amateur opinion is to figure out as much as you can yourself.

First, the most important thing is blood oxygen levels and sound sleep. I am forced to use a full face mask because of the high pressures needed. Having a mask not leak seemed to be nearly impossible at first but I found the right mask by trying a couple, learning to use mask pads learning to wash my face, shave my beard and how to put the mask on without ratcheting up the straps to the point of pain.

The mask pads were at the heart of me overcoming mask leaking into my eyes and the disgusting noises. Not sure they will work for everyone but worth a try. The pads keep the air out of my eyes and from the mask seal to let go and the noises that result.

I struggled with dry mouth and use Biotene rinse and that helps a lot. I faced a lot of lower back pain but learned to pile up a couple pillows to tilt up some and that really helps.

Use this forum for support and information and learn to learn on your own; there are lots of sources but keep in mind that the information isn't equal and some advice won't be helpful. Good luck with your search for sleep. Oh yeah, I bought a watch-style oximeter from eBay to monitor blood oxygen as I think effective therapy is reflected in good oxygen; my sleep study showed bad dips as events occurred for long periods while I slept. This is no longer the case and I am actually fresher and not sleepy during the day anymore.

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CreativeOcherPenguin0099 +0 points · over 8 years ago

Right on George, i thought i was the only one! Thanks for the post

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DanM +1 point · almost 9 years ago Sleep Enthusiast Support Team

Hi @AmusingVioletOstrich1800, and welcome to the MyApnea.Org forum. @wiredgeorge has provided some sound advice about doing as much as possible to educate yourself, so I'm glad you are here. Mask fit is probably the most difficult part of beginning PAP therapy. I encourage you to contact both your home care equipment provider and your physician and let them know you require assistance. A good home care company will allow you to try several masks, and they should fit you with the mask connected to the machine and have you try to wear the mask in various sleeping positions. Masks can leak for many reasons--poor fit, being too loose or too tight, defective seals, etc. Many patient report that mask pads/liners are helpful for improving issues related to leak and skin irritation. They can usually be obtained from your home care company of through a number of online sources. Some people use moleskin to make their own liners. I hope you are able to resolve your mask fit issues, and please keep us posted!

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NeedMoreInfo +0 points · over 8 years ago

Hi All, I am 73 and have had sleep apnea for at least 3 decades. I have used several different type of mask, all with one type of problem or another. My current problem is painful nose abrasion all the time.

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barbz +0 points · over 8 years ago

When I use a mask that does that, I use a bandaid. I only leave under 1/4 inch sticky tape at each side of the padded area. Works for me.

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NeedMoreInfo +0 points · over 8 years ago

I will try. I didn't think a bandaid would stick since the nostris is a bit moist. Thanks for the suggestion

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NeedMoreInfo +0 points · over 8 years ago

barbz, I tried your suggestion and it worked fine. Much less sore today. In a few days I'm sure it will be fine. Thanks

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NeedMoreInfo +0 points · over 8 years ago

I have tried the bandaid as suggested. The original sore is gone, but now I have a sore where the bandaid is. I am now also getting blow surges. I never had that before.

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DanM +1 point · over 8 years ago Sleep Enthusiast Support Team

Hello @NeedMoreInfo. Depending on the location of the nose abrasion, there are a couple of things that may help. Using a CPAP mask liner may be helpful, or using a piece of moleskin cut to fit the area and placed between the mask and the skin may also work. CPAP mask liners are made for nasal masks, full face masks, and even for nasal pillows now. A quick Google should display some options for you. Irritation may also occur if mask headgear is too tight. Hope this information is helpful!

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BrainsNeedSleep +0 points · over 8 years ago Sleep Commentator

I found it sort of counterintuitive that my mask instructions say that OVERtightening the mask straps was likely to lead to MORE leaking... now with the use of EERS treatment and having to patch the normal vented mask's vent holes with Mack's silicone Putty (the vent holes have been moved further down the hose assembly, I still have them!) I have two different leak-abatement issues to address, but my sleep is getting better, and my numbers, such as they are, are waaaay down. But one leak and poof -- there goes the night... !

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DiligentApricotLeopard8586 +0 points · over 8 years ago

My name is Regina and last night was my first CPAP night. I was made aware of my APNEA 20 years ago and finally was able to get diagnosed and treatment started.

I see a lot of valuable info on the forum. Thanks to everyone for sharing your experiences. It does help.

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DanM +1 point · over 8 years ago Sleep Enthusiast Support Team

Hi @DiligentApricotLeopard8589 (Regina!), and welcome to MyApnea.Org. Please feel free to share your experiences here on the Forum!

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BrainsNeedSleep +0 points · over 8 years ago Sleep Commentator

@diligentapricotleopard8586 Wow, that was a long time between being made aware and getting treatment started, but good for you and hope it helps!

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wiredgeorge +0 points · over 8 years ago Sleep Enthusiast

Dillegent, you can change your user name to something less cumbersome. Probably under settings tab after you log in.

I second the suggestion to try the mask liner. They have transformed my full face mask from a whistling and hissing noise machine into something I can wear without intrusive seal leaks AND my face doesn't feel as much pressure. The mask can leak BUT you don't really notice much and my moderate apnea is well controlled with few (less than 1 per hour) incidents. Good MASK LINER and your MASK TYPE

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BrainsNeedSleep +0 points · over 8 years ago Sleep Commentator

Yeah, I like the "less cumbersome" approach, @WiredGeorge! I keep seeing your remarks about mask liners...maybe I'll try some. Any in particular you recommend? I know some people make their own...

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FriendlyPinkMeerkat4903 +0 points · over 8 years ago

Hi, my name is Helen.

A little history, I am 44 years old, and have not slept through the night since I was a young child. My brain just won't shut down, it's like bumper-cars in my brain. One thought right after another. I was referred to a sleep specialist who said I needed a sleep study because she was certain I have sleep apnea, due to a tiny mouth and a big tongue (that's too big for my mouth). I had the sleep study and the tech, who isn't supposed to say anything, told me that I'd be hearing from the doctor "pretty quickly". Sure enough, I heard from them that same day. My AHI was 87, and the AHI during REM sleep was 141.8. HOW SCARY!!! She said my brain was keeping me awake to keep me alive. I picked up my CPAP the next day, and I'm struggling to get comfortable with it, but last night was the first night in as long as I can remember, that I wasn't up roaming around the house during the night. I did wake up at least half dozen times during the night, but apparently went back to sleep fairly easily. I felt just as exhausted as ever this morning and it's 3:15 in the afternoon and I still feel like a zombie. I'm hoping for good sleep and feeling better tomorrow.

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BrainsNeedSleep +0 points · over 8 years ago Sleep Commentator

It may take you a little bit of time to get that brain out of "wake the heck up!!!" mode, and it may occasionally get bumpy, but FINALLY you are getting what you need. Hang in there. It will get better! I've had mine since childhood, too, and while I was diagnosed in 2008, it wasn't until just this past December that I actually started getting GOOD sleep and the right treatment. When I first started using CPAP, I had someone else's mask (leaked like crazy) and no help and no brain to ask for it, but after weeks, I did begin to see that I could make it a couple of hours before I got too exhausted...then three...then four...so even with "two steps forward and one step back," I made progress. You will, too.

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DanM +1 point · over 8 years ago Sleep Enthusiast Support Team

Hello @FriendlyPinkMeerkat4903 (Helen), and welcome to MyApnea.Org. It sounds like you have had some pretty restless nights leading up to your testing and treatment! Many of us with sleep apnea share similar stories of feeling tired and like we just were not sleeping at night. I'm glad to read that you are attempting to get comfortable with your CPAP. Starting treatment can be difficult. One thing that may help is to practice wearing your CPAP while you are awake and doing something to distract yourself--like reading a book or watching television. It often helps people to adjust to the feeling of the mask on the face and to become more accustomed to breathing out against the incoming air pressure. Hopefully, as you continue to use your treatment, you will adjust and start sleeping for longer periods. Better sleep may help you feel less exhausted, but there are other things, like medications, that may contribute to those feelings of fatigue. Please feel free to ask questions and share your experiences. We have a great member community here at MyApnea.Org, and many are willing to share their stories, tips and tricks for adjusting to treatment. Best wishes!

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wiredgeorge +0 points · over 8 years ago Sleep Enthusiast

Helen, WELCOME! Sounds like you found therapy just in time. Your numbers are off the chart and I can't imagine sleeping soundly with that many breathing interruptions. They prescribed a CPAP? What pressure is the machine set at?

To share a bit of my story, I was referred to the sleep therapy world because I was falling asleep constantly during the day; while driving, while using power tools, while sitting still... all the time. My wife took a video of me asleep and it showed me stop breathing for almost a minute. The sleep study was a revelation an showed when I stopped breathing and had AHI instances, I didn't sleep deeply AND my blood oxygen level went down into the 70s... sometimes for a minute or more.

When I slept, I constantly had shallow sleep dreams; somewhere between wakefulness and shallow sleep. I talked in my sleep constantly and was on the edge of wakefulness the whole night. I had to get up and make bathroom runs 3-4 times a night. I thought this was normal and it WAS my normal.

After the sleep study, I received a BIPAP machine because of the very high pressure needed to keep me breathing during the night. 25 and 20 on the exhale period. It took me about 3 months to figure things out. I have a ResMed machine and I get a daily report on sleep quality and I have only slept 7 hours once in about 5 months and normally sleep 5 to 5 1/2 hours and am fully refreshed during the day and not sleepy. I still get miserable marks for mask leak but wearing a mask liner makes the leaks insignificant. I have fewer than .5 AHI events per night consistently and that a a great blood oxygen history since treatment started makes me optimistic that treatment can only get better. FYI: I bought a small recording blood oxyimeter that I can download the info from in the morning to monitor blood oxygen levels. Looks like a wrist watch....

You are on the right track so self-educate as much as possible and enjoy some deeper sleep.

[+] [deleted] +0 points · over 8 years ago
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GregariousOcherSquid6492 +0 points · over 8 years ago

My name is Victor. I did a home study followed by sleep study this year. I know about Sleep Apnea because my college buddy had it bad at 30 something.

I had always grind my teeth since a kid. My spouse said I make enough noise that I wake her up when we first married but got used to it. I am 72 and finally getting the APAP machine to help me sleep.

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DanM +1 point · over 8 years ago Sleep Enthusiast Support Team

Hi Victor. Congratulations on finally getting your sleep apnea treated! Please come back to the Forum and ask any questions you have, offer advice, or just let us know how you are doing! Best wishes!

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AffableCrimsonGoldfish2638 +0 points · over 8 years ago

Just had my 1st night with the Cpap, it made the corners of my mouth bleed a little. Can't eat... My tongue feels fat and RAW!!!!

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Ruby +0 points · over 8 years ago Sleep Commentator

That doesn't sound right. What type of mask are you using? I would discuss this with your doctor immediately.

Please be advised that these posts may contain sensitive material or unsolicited medical advice. MyApnea does not endorse the content of these posts. The information provided on this site is not intended nor recommended as a substitute for advice from a health care professional who has evaluated you.