02-27-2012, 09:44 PM
New - Intro; Intrduction
[parts of this thread were copied from the old forum]
Hi, I'm new to the board here. Was just looking for a place where I could talke with others dealing with sleep apnea like myself. Just a little background about me, I guess. I'm 29 (almost 30) and I feel like I"m falling apart. I'm dealing with high blood pressure, migraines and apnea. I just did my sleep tests back in December/January, got machine end of January. After my sleep studies, I talked with the doc who said I had "severe apnea", have a pressure of 19, she said I had something like 219 apneas, I don't remember though if that was total or what though! I didn't think I slept at all for that first test. I never hit REM sleep though. Second study with CPAP, slept pretty good, thought I was going to adjust to CPAP great. I haven't at all! I tried a nasal mask knowing I was a mouth breather, basically because it was more comfortable. I have since gotten a FF mask but am still struggling. What am I struggling with you ask? EVERYTHING! I can't get comfortable, I can't keep it from leaking, I take it off ALL the time and don't put it back on, or I just don't sleep with it. Since getting it in January, I have not logged even 300 hours of sleep time with it. I've been to a ENT doctor who ruled out surgery of any kind, said I had a deviated septum, but that was common, and shouldn't be an issue.
I'm looking for any sort of advice, support, whatever, that's why I came here. I look forward to getting to know everyone, and I hope I can pass along what wisdom I have learned along the way.
Just as far as specifics go, my machine is a ResMed S7 "lightweight" and my mask is a ResMed Ultra Mirage FF. I do have and use a humidifier as well.
Thanks!
B-Worthey
Welcome to Apnea Board, bworthey.
I know just what you're going through...I used to be on a pressure of 20-22 cm with a full-face mask.
The reality is that there is no full-face mask that will seal reliably at pressures greater than 14 cm or so. And the problems associated with severe leaks will usually keep all but the most persistent CPAP user noncompliant.
What finally did the trick for me was a combination of factors. First, I found an autopap that controls my apnea events while keeping my average pressure reasonably low.
Then I worked very hard to lose some weight, which brought down my pressure requirements to the point that I could use a full-face mask fairly effectively. That, in turn, helped me to remain compliant.
Finally, I discovered the Mirage Activa nasal mask. Very comfortable, and no leaks! Today I'm pleased to say that my PAP therapy has made a huge difference in my life.
The most important lesson I've learned is that you have to keep trying. You've got to take an active role in your therapy. Don't be shy about asking to try different machines and masks. Remember that time and technology are on your side. When I started CPAP in 1993, the machines were essentially reveresed vacuum cleaners and the masks were pretty crude. Today's PAP equipment is improving continuously. Hang in there and let us know how it goes!
Carl
"You knew the job was dangerous when you took it, Fred." - Superchicken
Aug 4 2007, 10:44 PM Post #3
You might try the nasal mask with a chin strap to help keep your mouth closed so you breathe through your nose. I expect the nasal mask is more comfortable and easier to keep sealed than a full face mask.
I use a Respironics Premium model chin strap. It isn't perfect but it's better than some and does the job most of the time. Some simple straps are totally worthless as they don't stay in place.
John
Hi: I am new too and just joined the board forum. I am 61 years old and have been put on a Bilevel Remstar M series and humidifier with a Opus Nasal pillows mask and an oxygen concentrator. I feel for what you are going thru as I am trying to adjust during this first week. How is it for you now since January?
I am 36 and just got the machine (my husband and I got them together - how adorable - huh? CHOKE!)
I am having issues with the fact that I have post nasal drip and everytime I cough, I feel like I am drowning.
I think that my auto-titrate may be set too high and maybe doesn't adjust to a lower pressure to allow for that - so I contacted my DME guy.
I also have a problem with the nasal masks headgear matting down my thick hair and making it feel like I have a neck blanket (long hair) on - great for 102 degree weather!
So needless to say, I have reached out to my DME guy and I anticipate that he and I are going to become close friends to try to remedy these issues.
I think that the losing the weight can make a difference - but you need to find out if you have obstructive sleep apnea (due to weight) and/or the neurological one - my husband and I have both, so even if we were thinner, we would still need the machines b/c our brains are deforned and not sending the appropriate messages to breathe -
Thanks for the advice ont eh chin-straps I will look into that as well!
Thanks for the replies. I think I have finally gotten past the leaks and things....now, I just can't keep the mask on during the night. I keep taking it off after like 2-3 hours and never put it back on because I'm not waking up and not realizing I'm talking it off.
Also, I'm not understanding what you are saying about trying out different machines, masks, etc., I've had to pay for everything. I mean, my insurance covers some, but there has been no talk from the places I've gotten stuff about taking stuff back, I'm still paying on the stuff that I got 8 months ago. I lost my job 3 months ago, so have no insurance so there is definitely no chance of getting anything new anytime soon.
I agree that apap or bipap sounds like the way to go for me. That's the direction my doctor was going, at least she was leaning to bipap right before I lost my insurance. I will say this, I have gotten to a point that when I don't get even those 2-3 hours of sleep with my mask I can tell a difference the next day. I usually take my wife to work and if I have not slept with my mask the night before, I can not stay awake driving her in, but if I have I do okay, it's the weirdest thing!
Anyway, thanks for the info.
B-Worthey
sorry to hear you are having so much trouble bworthy. I live in Reno, NV and the pulmonary docs here give me different masks to try at no extra charge. I am able to take them home to try and if it does not work I can take it back and get another without having to buy each time. I still have trouble with leaks but the tech said you don't have to have a complete seal and some leakage is ok.
I don't like the air blowing up my nose so they gave me one that has the air comming down from the top and it is so much better.
I am on my 3rd week now and starting to feel sightly better. They said it takes about a month and you will just notice small differences each day. Last night was the first I did not fall asleep watching TV.
Good luck to you.
I'm new to the Board but I've been a hose head for almost ten years. I get my medical apnea medical care from a wallet Dr. I shouldn't complain. 10 years ago he was the only Dr. In town that could spell apnea. My first sleep study showed that I had mils apnea with an AHI of 4.5 but my O2 level was low. I've been on a couple of CPAPs since the first with a pressure oh 9. Aren't all these numbers interesting?
I recently had a new sleep study (Dr's wife wanted a new car). This time my AHI was 67. It's amazing what effect a couple of glasses of wine will do to your sleep study.
I'm one of the fortunate ones who can fall asleep anywhere anytime. Fortunately, I've never killed anyone in an accident. I haven't had any problems with my CPAPs after I found a mask that wouldn't put a blister on the bridge of my nose. I'm lucky to have good med techs to work with on mask selection and fitting. Whenever I go to the Wallet Dr. The Med Techs call me back to check the new masks that are available.
My wife is also a hose head. We are quite the site when we go to bed. I wish that this board was up and running when I started using a CPAP. If it was, I'm sorry I didn't find it.
Edited by Cutter, Dec 10 2011, 05:49 PM.
Quote:bworthey wrote:Jul 25 2007, 10:31 AM Post #1
Hi, I'm new to the board here. Was just looking for a place where I could talke with others dealing with sleep apnea like myself. Just a little background about me, I guess. I'm 29 (almost 30) and I feel like I"m falling apart. I'm dealing with high blood pressure, migraines and apnea. I just did my sleep tests back in December/January, got machine end of January. After my sleep studies, I talked with the doc who said I had "severe apnea", have a pressure of 19, she said I had something like 219 apneas, I don't remember though if that was total or what though! I didn't think I slept at all for that first test. I never hit REM sleep though. Second study with CPAP, slept pretty good, thought I was going to adjust to CPAP great. I haven't at all! I tried a nasal mask knowing I was a mouth breather, basically because it was more comfortable. I have since gotten a FF mask but am still struggling. What am I struggling with you ask? EVERYTHING! I can't get comfortable, I can't keep it from leaking, I take it off ALL the time and don't put it back on, or I just don't sleep with it. Since getting it in January, I have not logged even 300 hours of sleep time with it. I've been to a ENT doctor who ruled out surgery of any kind, said I had a deviated septum, but that was common, and shouldn't be an issue.
I'm looking for any sort of advice, support, whatever, that's why I came here. I look forward to getting to know everyone, and I hope I can pass along what wisdom I have learned along the way.
Just as far as specifics go, my machine is a ResMed S7 "lightweight" and my mask is a ResMed Ultra Mirage FF. I do have and use a humidifier as well.
Thanks!
B-Worthey
Quote:ConnCarl Wrote:Jul 26 2007, 07:34 PM Post #2
Welcome to Apnea Board, bworthey.
I know just what you're going through...I used to be on a pressure of 20-22 cm with a full-face mask.
The reality is that there is no full-face mask that will seal reliably at pressures greater than 14 cm or so. And the problems associated with severe leaks will usually keep all but the most persistent CPAP user noncompliant.
What finally did the trick for me was a combination of factors. First, I found an autopap that controls my apnea events while keeping my average pressure reasonably low.
Then I worked very hard to lose some weight, which brought down my pressure requirements to the point that I could use a full-face mask fairly effectively. That, in turn, helped me to remain compliant.
Finally, I discovered the Mirage Activa nasal mask. Very comfortable, and no leaks! Today I'm pleased to say that my PAP therapy has made a huge difference in my life.
The most important lesson I've learned is that you have to keep trying. You've got to take an active role in your therapy. Don't be shy about asking to try different machines and masks. Remember that time and technology are on your side. When I started CPAP in 1993, the machines were essentially reveresed vacuum cleaners and the masks were pretty crude. Today's PAP equipment is improving continuously. Hang in there and let us know how it goes!
Carl
"You knew the job was dangerous when you took it, Fred." - Superchicken
Quote: jdickins wrote:
Aug 4 2007, 10:44 PM Post #3
You might try the nasal mask with a chin strap to help keep your mouth closed so you breathe through your nose. I expect the nasal mask is more comfortable and easier to keep sealed than a full face mask.
I use a Respironics Premium model chin strap. It isn't perfect but it's better than some and does the job most of the time. Some simple straps are totally worthless as they don't stay in place.
John
Quote:becka wrote:Aug 11 2007, 12:40 PM Post #4
Hi: I am new too and just joined the board forum. I am 61 years old and have been put on a Bilevel Remstar M series and humidifier with a Opus Nasal pillows mask and an oxygen concentrator. I feel for what you are going thru as I am trying to adjust during this first week. How is it for you now since January?
Quote:NHSkiGirl Wrote:Aug 12 2007, 02:40 AM Post #5
I am 36 and just got the machine (my husband and I got them together - how adorable - huh? CHOKE!)
I am having issues with the fact that I have post nasal drip and everytime I cough, I feel like I am drowning.
I think that my auto-titrate may be set too high and maybe doesn't adjust to a lower pressure to allow for that - so I contacted my DME guy.
I also have a problem with the nasal masks headgear matting down my thick hair and making it feel like I have a neck blanket (long hair) on - great for 102 degree weather!
So needless to say, I have reached out to my DME guy and I anticipate that he and I are going to become close friends to try to remedy these issues.
I think that the losing the weight can make a difference - but you need to find out if you have obstructive sleep apnea (due to weight) and/or the neurological one - my husband and I have both, so even if we were thinner, we would still need the machines b/c our brains are deforned and not sending the appropriate messages to breathe -
Thanks for the advice ont eh chin-straps I will look into that as well!
Quote:bworthey wrote:Aug 18 2007, 09:44 PM Post #6
Thanks for the replies. I think I have finally gotten past the leaks and things....now, I just can't keep the mask on during the night. I keep taking it off after like 2-3 hours and never put it back on because I'm not waking up and not realizing I'm talking it off.
Also, I'm not understanding what you are saying about trying out different machines, masks, etc., I've had to pay for everything. I mean, my insurance covers some, but there has been no talk from the places I've gotten stuff about taking stuff back, I'm still paying on the stuff that I got 8 months ago. I lost my job 3 months ago, so have no insurance so there is definitely no chance of getting anything new anytime soon.
I agree that apap or bipap sounds like the way to go for me. That's the direction my doctor was going, at least she was leaning to bipap right before I lost my insurance. I will say this, I have gotten to a point that when I don't get even those 2-3 hours of sleep with my mask I can tell a difference the next day. I usually take my wife to work and if I have not slept with my mask the night before, I can not stay awake driving her in, but if I have I do okay, it's the weirdest thing!
Anyway, thanks for the info.
B-Worthey
Quote:becka wrote:Aug 19 2007, 03:22 PM Post #7
sorry to hear you are having so much trouble bworthy. I live in Reno, NV and the pulmonary docs here give me different masks to try at no extra charge. I am able to take them home to try and if it does not work I can take it back and get another without having to buy each time. I still have trouble with leaks but the tech said you don't have to have a complete seal and some leakage is ok.
I don't like the air blowing up my nose so they gave me one that has the air comming down from the top and it is so much better.
I am on my 3rd week now and starting to feel sightly better. They said it takes about a month and you will just notice small differences each day. Last night was the first I did not fall asleep watching TV.
Good luck to you.
Quote:Cutter Wrote:Dec 10 2011, 05:38 PM Post #8
I'm new to the Board but I've been a hose head for almost ten years. I get my medical apnea medical care from a wallet Dr. I shouldn't complain. 10 years ago he was the only Dr. In town that could spell apnea. My first sleep study showed that I had mils apnea with an AHI of 4.5 but my O2 level was low. I've been on a couple of CPAPs since the first with a pressure oh 9. Aren't all these numbers interesting?
I recently had a new sleep study (Dr's wife wanted a new car). This time my AHI was 67. It's amazing what effect a couple of glasses of wine will do to your sleep study.
I'm one of the fortunate ones who can fall asleep anywhere anytime. Fortunately, I've never killed anyone in an accident. I haven't had any problems with my CPAPs after I found a mask that wouldn't put a blister on the bridge of my nose. I'm lucky to have good med techs to work with on mask selection and fitting. Whenever I go to the Wallet Dr. The Med Techs call me back to check the new masks that are available.
My wife is also a hose head. We are quite the site when we go to bed. I wish that this board was up and running when I started using a CPAP. If it was, I'm sorry I didn't find it.
Edited by Cutter, Dec 10 2011, 05:49 PM.
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