"Thanks for this information Lisa. It really helps.
Anyone else?
"
Sleep Apnea Forum Bringing Power to the Patient
New? Free Sign Up
Then check our Welcome Center to a Community Caring about Sleep Apnea diagnosis and Sleep Apnea treatment:
CPAP machines, Sleep Apnea surgery and dental appliances.
CPAP Supplies
Latest Activity
Lisa replied to ZolliStar's discussion What's the Right Machine?"Hi Zollistar, I much prefer using an Apap to a straight Cpap. I changed over a few years ago and found straight away that I had much less of a problem with leaks. Another thing that I have noticed is I used to have ongoing problems with my nose…"
Terry Vella replied to ZolliStar's discussion What's the Right Machine?"He's still going, a bit of a pain sometimes but that's life, thanks for asking."
ZolliStar replied to ZolliStar's discussion What's the Right Machine?"This helps a lot, Terry! Thanks for letting me know.
How is your dog??
"
Terry Vella replied to ZolliStar's discussion What's the Right Machine?"ZolliStar, I went straight to an auto so can't really compare but from what I have heard there are two major benefits, first, the comfort factor of not having the high pressure all night and second, it adjusts to what you require, so if you use…"
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"Ginny, they are probably not doing anything against the law- though it may seem like fraud to us it may be an accepted practice. I would rather change DME's. Have you talked to the manager. They don't want to lose your…"
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"It really burns me up that they are doing things like this. Monday I am going to lok up th eMedicare complaint number and give them an ear full.
"
RockRpsgt replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"Companies like this will have to pay in the end. Medicare is taking no prisoners in their effort to reform medicare fraud."
RockRpsgt replied to Mary Z's discussion Symptoms"I had zero symptoms. I was testing equipment one night and fell asleep hooked up. When I woke up my doc said I had an AHI of 10 with 30 second events. I have been on PAP ever since."
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"I just use a large rubber band and safety pin to attach i tho the sheet. It doesn't exactly kink, but rather seems to have almost bends that don't quite ever go away. I have one that doesn't but all the others seem to.…"
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"My light weight tubing does not have a tendency to kink. It just hangs down from the stand and comes back up to the bed. I tried a hose hanger, but bought the cheaper travel model and it just wasn't up to the task."
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"I was really surprised when the congestion improved without the humidification. Yes, I use the lighter weight tubing too. Do you have trouble getting the bends and kinks out of them???? I have one favorite that is broken in and I hate…"
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"The reasoning behind changing the tubing is that it may develop small holes or tears which causing leakage. I am careful with my tubing and don't have any animals or children playing with the tubing. I don't feel like they have…"
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"I have ben using one of my cushions for 3 months now. I think I will just see how long I can actually use it without leaks before I replace it. I wonder if it is OK that I do not replace the tubing but about every 6 months???? I…"
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"I agree Ginny, it does come out of all our pockets. I too have Medicare with a Humana supplement and insurance with my partners work. This is the only year I will have anything but Medicare and supplement. My last two Medicare…"
Terry Vella replied to Mary Z's discussion Symptoms"Good post Mary, I was like you when I was younger but the the sleep deprivation really started kicking in a few years ago my symptoms change, actually didn't change but got much, much worse. I was diagnosed with depression and on meds for 2…"
Mary Z posted a discussionSymptoms
Just trying to drum up a few posts-What symptoms did you have that got you to the sleep apnea diagnosis?I was excessively tired during the day- falling asleep eating breakfast and standing on my feet. I couldn't drive or stay awake during appointments. I thought this was the beginning of my apnea. Then I remembered the mandatory 4-5 hour naps in the afternoon when I was dead to the world. That must have been the real beginning. I went to my family practice doctor hoping for a prescription…See More
Ginny Edmundson replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"My insurance is Medicare plus supplement. SO I pay nothing out of my pocket. BUT it is coming out of ALL out pockets...........My DME is a nationally known company. I am really thinking of calling the medicare hotline.
"
Mary Z replied to Ginny Edmundson's discussion New "Rant" about DME/Wisp"I think this kind of behavior may be the norm with DMEs. I happen to have one of the good ones so I'm lucky. It would be great if you called your insurance company. You can steal millions if you steal $40 from a bunch of…"
If you had two pieces of advice to give a newbie....
...what would those two pieces be?
A lot of us would really benefit from the been-there, endured-that experience you veterans have to offer us.
AND....
Happy New Year!
Views: 1936
Replies to This Discussion
-
Permalink Reply by Susan Jane Lau on -
Reply from Susan
I have had my bipap machine for 10 days. The technician led me to believe I would feel better the next day. My days have not been good but today I got up feeling much better. I have no problems with my mask or sleeping, just feeling bad when I awake in the morning. After reading these comments I feel much better knowing it does take time. Hope it will lead to getting rid of my Paxil in the future. Thank you so much for your helpful comments.
-
Permalink Reply by Wade Hampton on
-
(1) Don't trust your equipment supplier.
(2) Question everything that you are told. Do your own research.
-
Permalink Reply by Marianne Kleminski on
-
Where do you find the think that hangs your hose above your head? Thanks, Marianne
-
Permalink Reply by Banyon on -
Many good suggestions here. Some of them will work for some people and some will not work for some people. For instance, hose hangers I hate and they are counterproductive to my therapy but others swear by them. Same for mask liners.
Now for a couple of things that are critical and will help 99.9% of dedicated users. First, is get a data capable machine and software. It is true with all processes, and CPAP is a process, it is very difficult to improve that which you don't measure. The software gives you the measures of your therapy's effectiveness. It can be used to improve the therapy.
Also what Wade says is true for all CPAPers:
Wade Hampton said:(1) Don't trust your equipment supplier.
(2) Question everything that you are told. Do your own research.
-
Permalink Reply by Marianne Kleminski on
-
I have had a few suppliers. First it was praxaire. They would not let you try on. Not good. Find a supplier that you can try as many masks as you would like and lay down with them with cpap pressure adjusted to your pressure. Also find a supplier that has a return policy of some kind and ask what all that entails. I made the mistake of not asking for details in how it worked.
I ended up with an infection from the Opus nasal pillows. Then they told me when using Nasal pillows to use KY Jelly with them since I tend to get sores. I have used a CPAP and Nasal Pillows for maybe 6 years and never once has anyone told me that.
Praxaire was bought out by Apria and they were a joke. Told me they had a return policy and that I could try on masks, so went through the whole process to get the script and get the insurance co to authorize the mask and then got there and they said they have neither option and did i want to take a mask with me. I was furious and asked to talk to a Manager. I got a phone number and it took days for me to find him! He said they did have a return policy but no they could not allow me to try on masks. I opted to find another supplier. The RT that I had seen was so ineffective she never called me back as promised by the manager anyway.
So advice is be diligent and don't let people drag you around by your nose! LOL, litterally!
-
Permalink Reply by Brad Helms on
-
1. Don't quit, It will get easier.
2. If the stress builds up, get help just don't quit.
-
Permalink Reply by Bill BIstak on
-
As an RT, this is so difficult to answer because one answer leads to another question or question set....
I'll try though ;)
1) Be a stickler for a very comfortable mask, full face masks wear differently than nasal pllows and each type of mask demands a different breathing pattern, which determines how quickly you can get used to the mask and positive pressure from the sleep device you ultimately acquire.
2) Get as educated about your OSA (mild, moderate, severe, etc) as much as possible.
And know how you can achieve optimal sleep with the mode of treatment that is decided along with your doctor, RT, clinician, sleep technician etc.
Sometimes, this optimal sleep formula involves information that is very consistent with all of the professionals involved in your care.
And sometimes information can get misinterpreted easily (no one's fault, it has to do with how much information is passed along the professional chain).
And each person has a slightly different focus for your proper care;
1) mask fit and ideal PAP unit (from RT or clinician perspective)
2) ideal pressure (from sleep technician perspective)
3) AHI control (sleep doctor perspective)
etc.
I could write volumes more but this is the heart of it all.
Here's to great sleep!
Bill
-
Permalink Reply by ZolliStar on -
Say that again, Wade!
My DME contact offered "advice" that was completely wrong (he suggested that I add some nice smelling lavendar to the water in my humidifier) and their RT, who was supposed to show me how to use my equipment, told me I could use ordinary tap water. When I found out (thanks to this web site) that I should use distilled water, not tap water, I called him to let him know so that he wouldn't pass along this mistaken advice to any other new CPAP user.
Do YES! to both pieces of advice, Wade.
Wade Hampton said:(1) Don't trust your equipment supplier.
(2) Question everything that you are told. Do your own research.
-
Permalink Reply by SarahVee on
-
@ Susan: Hang in there! You've got the hard part down--sleeping with the mask on :) You won't feel better overnight. The damage that apnea did to your body didn't just happen overnight so neither will the repair. But now there's no more damage being done and you'll notice that you feel better gradually. I realized it one day at work. It was the middle of the afternoon and I thought, "hey--I'm not exhausted!" and realized I hadn't been in a while. Keep it up!
Susan Jane Lau said:Reply from Susan
I have had my bipap machine for 10 days. The technician led me to believe I would feel better the next day. My days have not been good but today I got up feeling much better. I have no problems with my mask or sleeping, just feeling bad when I awake in the morning. After reading these comments I feel much better knowing it does take time. Hope it will lead to getting rid of my Paxil in the future. Thank you so much for your helpful comments.
-
Permalink Reply by My Sleep APnea on
-
Not all machines are created equal/ as well not all masks are going to work for you. Here are the two pieces of advice. If you are having problems, ask the folks here who have experience instead of asking your equipment provider. They are in it for the profit.
My first CPAP was used and was sold to me as new. it had problems with the humidifier.
After talking to the person who helped me, she went against her employers orders and sent me out the door with a brand new up to date machine that worked, It cost her her job.
And get the mask that works for you once again don't listen to the sellers, ask those who have the experience and not everyone has the same needs.
-
Permalink Reply by ZolliStar on
-
I don't have a data capable machine.
I think I'm going to spend my own green money to get one. I'm using the machine I was "issued". I didn't know as much as I know now, thanks to this forum and the support group meetings.
One learns. Oh! How one learns!
Banyon said:Many good suggestions here. Some of them will work for some people and some will not work for some people. For instance, hose hangers I hate and they are counterproductive to my therapy but others swear by them. Same for mask liners.
Now for a couple of things that are critical and will help 99.9% of dedicated users. First, is get a data capable machine and software. It is true with all processes, and CPAP is a process, it is very difficult to improve that which you don't measure. The software gives you the measures of your therapy's effectiveness. It can be used to improve the therapy.
Also what Wade says is true for all CPAPers:
Wade Hampton said:(1) Don't trust your equipment supplier.
(2) Question everything that you are told. Do your own research.
-
Permalink Reply by Kristi Halsey on
-
Thank you so much for your encouraging words. I am in the beginning stages of trying to get used to sleeping strapped to a machine and have been having just as hard of a time mentally getting used to the idea as physically. I have wanted to give up, throw the machine out the window, and scream in frustration, but reading posts like yours helps me to calm down and keep on keeping on.
John Camacho said:1) Don't give up.
2) Don't give up.
I waited 8 long years to try again. It is so unnatural to sleep with an aparatus strapped to your face, but the benefits far outweigh the uncomfortable feelings that many of us struggle with in the beginning. Trust that it will get easier and know that you are not alone in what you are going through. If only I had been connected to a community 9 years ago, or that the science had progressed as much and the care workers understood it all back then as they do now I would not had struggled for so long.
I have been using the cpap for 1.5 years now, and its as natural as breathing!
God Bless and Good Luck
© 2013 Created by The SleepGuide Crew.
