newbie introduction

[JamieM]

I'd first like to say that I've been reading this forum for a while now and recently decided to register as a user so perhaps I could get some better tailored advice for my personal situation. Not that my situation is that unique, but with so many posts here, it's hard to find someone else that has a situation like mine and see what advice they have either given or received. BTW, the posts I have read are very helpful and I've received much encouragement from reading them.
I am a second timer, in other words, I tried cpap therapy about 2+ yrs ago and found I couldn't tolerate the mask. So, after a couple months of trying to use the cpap randomly, I gave up and sold the cpap at auction since it was gathering dust in my bedroom. This past year I have noticed my OSA has become much worse and my Dr. agreed. So, back to the sleep lab for a titration study, a new pressure setting, and back to the DME for a cpap. Long story short, my DME was terrible, wouldn't return phone calls, etc. I suspect they found out my insurance wouldn't pay for a new cpap since they had just bought/rented one a couple yrs earlier, so they blew me off. In the meantime, I was/am miserable with the sleepiness, so I bought a used cpap online and have been using it for 4 nights now.
I feel like this time I have a better outlook and mental attitude to make this work. My sleepiness is affecting my work, social life, etc.
So far, I'm a little diappointed. I've been using the cpap about 6-7 hrs/nite but still not feeling much better during the day. I definitely don't feel any better when i first get up in the the morning but I have noticed MAYBE a slight improvement during the day, but its so minute that its hard to say, perhaps I just WANT to feel better so I think I do. My mind definitely works that way. I'm one of those people that sees a documentary on TV about Lupus and suddenly I have all the symptoms. I'm thinking that perhaps the mask, which I still find terribly uncomfortable and waking me up several times during the nite, is offsetting any benefit I'm receiving from the cpap. My thoughts are, as I get used to the mask, I will sleep better and thus feel the benefits of the cpap more. At least that's my hope....
That's my story in a nutshell. I'm sure I will receive questions from you all and I encourage that. Please support me with this and as I become an old pro, I will offer any advice back that I can.
Now I need to figure out how update my user acct to show my equipment since I know people will be asking.

Thanks, Jamie

[Madalot]

Welcome to the forum, Jamie, from a fellow Virginian!!!

I'm sorry you've struggled so much, but am glad you're back trying again with a good perspective. Many people find that it takes a while of consistent usage before they begin to see or feel any real benefits. Don't give up!! If the mask isn't comfortable, can you work with the DME to try other ones?

You'll get a lot of help and input here. I look forward to seeing more posts from you.

[Tired Linda]

Welcome to the forum, Jamie. You will find a lot of useful information and helpful people here. Read, read, read and ask questions.

What pressure(s) are you using? Do you use the ramp? 6-7 hours a night is good for the first few nights.

Hang in there. Although some people slap on a mask, turn on the machine and feel better after the first night or two, many of us need more time. There's an awful lot to get used to with this therapy, and it takes time for the body and mind to adjust.

[Janknitz]

Welcome, Jamie, and congratulations on your committment to "getting it right" this time.

The first question I have for you is whether you've purchased the Encore Viewer software? It is crucial that you have access to the data your machine collects because that's the key to learning if your therapy is effective or not. You can be as compliant as possible but if you aren't getting effective therapy you are not going to feel any better. With the software, you can see if your apnea is under control, whether your pressure is adequate, and whether or not leaks are an issue. You cannot get that information without the software, even if the onboard screen (your PR machine is older and I'm not familliar with the display) shows you AHI and large leaks.

The damage from apnea is cumulative, and you've had a lot of time to accumulate damage, so you may need a lot of time to heal your body. Very few of us wake up refreshed after our first night with CPAP and "live happily everafter"--so you have to be patient with yourself and your body. But the key is making sure you're getting effective therapy in the first place.

[OutaSync]

Welcome, Jamie!

The first mask you try might not be the best fit for you. Some of us had to go through several tries before we found one that we can sleep comfortably with. Others slap one on and get it right from the start. So if it is the mask that is giving you problems, try another.

Bev

[vipertec]

Jamie,Welcome to cpap talk.com ,there is alot of good advise and information to be had here. I've been on cpap for almost two yrs now and it does take a while to get used to ,Hang in there it will get better ,I can tell you, you may have to try a few different types of masks to find one that you are comfortable enough with that you'll get a good night sleep.good luck and sleep well!

[JamieM]

Thanks all for the warm welcome and encouragement. That's exactly what I need!!
To answer a couple questions, my pressure is currently at 8, I am not using the software but I've already received a PM from another member and she is sending it to me. I have been experimenting with the ramp feature but lately I've not been using it because I seem to be starved for air when using the ramp in the beginning until the pressure builds to 8. I'm really not bothered by the pressure or the sensation, the mask is the only thing I find uncomfortable. I'm not used to sleeping with something strapped to my face as i'm sure no one is at first.
I will probably have questions about the software so please bear with me. I'm guessing I'll need a smart card to use with the software? Mine didn't come with one as I bought it used.

Thanks again!!

Jamie

[cflame1]

Jamie,
You'll need one of these:
https://www.cpap.com/productpage/Respir ... r-USB.html

as well as a smart card... computer's not cooperating to get you a link at the moment.

[sleepnationtv]

Welcome to the forum,

If you have any questions about equipment feel free to email us directly sleepnationtv@gmail.com

Also our video blog is a good way to investigate new masks and machines. http://www.sleepnation.tv

Welcome,

Dane

[jweeks]

Thanks all for the warm welcome and encouragement. That's exactly what I need!!
To answer a couple questions, my pressure is currently at 8, I am not using the software but I've already received a PM from another member and she is sending it to me. I have been experimenting with the ramp feature but lately I've not been using it because I seem to be starved for air when using the ramp in the beginning until the pressure builds to 8.

Jamie,

Welcome to the forum. I had really bad OSA that I let run for 20 years, right up to the point where I couldn't work any more. I did feel much better day one. I went from feeling like walking death up to simply horrible. It took 6 months to climb the rest of the way back from feeling horrible to feeling pretty good. It took me 20 years to get that awful, so recovering within 6 months seems great in comparison.

How did you come up with a pressure level of 8? As you note with starving for air, that is just about the minimum possible pressure that a person can have and still stay alive. If you have moderate to severe OSA, I'd expect higher pressure levels, though there is no direct correlation between severity and pressure levels. CPAP pressure works like a light switch. That is, you get very little benefit until you hit that magic pressure level that stents open your airway. Once you hit the magic pressure, you can breathe freely, and thus, are getting benefit from the treatment. The net-net is that it is possible to be just a sliver low on pressure, and end up feeling like you are getting no benefit at all. This number is what they should have come up with in your titration study. Often times, the sleep lab will not give you this number--they don't want folks to do what you did, which is go out and get your own machine. You may have to fight to get that info if they haven't provided it to you.

As far as a mask goes, that is the nirvana of CPAP. I went through a number of masks before I found the one that works for me. In my case, it is the Swift LT. Others report great luck with the Swift FX. If you can breathe through your nose, getting a nasal pillow mask might really help you since these masks are so small and light. I really don't even notice it anymore. In comparison, the Quattro that I started with feels like a torture device. The challenge here is that every face and every case is different, so what works great for me might be a total washout for you. Unfortunately, the only strategy that works is to try a number of different masks until you find that one that works for you.

-john-

[JamieM]

Thanks All! I also thought that a pressure of 8 seemed low but that is indeed what is on my prescription from my Dr. Fortunately, I can change the pressure myself and was thinking of tweaking it up a tad. If I remember correctly, my pressure was set at 10 the last time I had a sleep study and cpap. I wondered why it went down....

[rested gal]

Welcome to the board, Jamie. Sounds like you're on the right track!