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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!

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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.

(1) Don't trust your equipment supplier.

(2) Question everything that you are told. Do your own research.

Where do you find the think that hangs your hose above your head?  Thanks, Marianne

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.

 

 

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!

 

1. Don't quit, It will get easier.

2. If the stress builds up, get help just don't quit.

 

 

 

 

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 

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.

 

 

@ 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.

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.

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.

 

 

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 

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