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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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Yeah, Terry, I'm not exactly surewhat's the reason they don't give information about the forums.  Probably it's because they are not in control of what information you get. Could there be any liability involved for the doc if you start changing pressure settings on your own before you're educated enough?  A person can learn a lot from the forums, but that information is not always used intelligently, and is often opinion couched as fact and just plain wrong. 

The docs and dmes just don't make time for  the small stuff all the time.  Mask fitting seems to be one big problem.  There are the comfort features such as ramp and EPR which can be used or not and tweaked as necessary.  I've heard of some people who actually are given a day long class on their machine.  The questions often come up after the class, though.  One thing we can get from the forum that we'll never get from the doc or dme is the clinical manual and the information and warnings about changing youir own pressure.  I have never heard of anyone getting into real trouble.

Mary, You know what I think, I think most Dr's and DME's don't have sleep apnea and don't understand what we go through. They learn everything from books instead of the 'school of life'. That goes for all illnesses not just sleep apnea. In Australia, they are not called DME's just sleep clinics or sleep centre's and the one I go to is very good, the owner has sleep apnea and he has a number of sleep centres. He gets his assistants to take home new masks etc and they have to use them for a night to know what it's like for the patients. That's just my opinion

Very good point, Terry.

My sleep specialist knows that I tweak my machine - I tell her what I'm doing, and ask for safe ranges to use. The comfort settings (like ramp and ESR) can be enabled to work in non-clinician mode, so I've done that (with her approval). I reduced the upper limit of correction after discussing it with her - I was getting a hurricane of a leak at the old upper limit, and sufficient correction at a lower upper limit, so she was OK with me changing it.

I've also discussed mask changes and usage with my doctor, and she encourages people to do their own reading on the web - as long as they check in with her to keep any changes within the safe range for the patient. She's always interested in hearing about new insights that I find (from forums like  this one).

Some doctors may not be as cooperative... I don't tend to stay with such doctors for long!

My DME provider is OK for supplying gear, but only give a short session about how to use the CPAP machine.  They have people who can answer questions, but the various web forums are lot more informative. They also are unable to provide any gear that isn't 'on their list', so for specialty items like batteries and DC power supplies I've had to go elsewhere and then fight with the insurance company for reimbursement (my doctor had prescribed these devices because a power failure and loss of CPAP could be dangerous for me).

1. Spend the extra money if you can, and get an auto-cpap. My assigned pressure for a CPAP is 7.5, but with my auto-cpap (since it can sense what pressure I need) it's at an average of 4.5 all night and it's much easier to sleep. It's also great to have the printouts of my AHIs etc every day, to track improvement. Also, as I'm hoping to lose weight, if I do I won't have to go back in for another awful overnight titration study as my machine will automatically adjust regardless of how much weight I gain or lose.

2. Give the nasal pillow mask a try--I thought I would HATE it, but it's turned out to be the only kind I can tolerate. And if you can buy from a site that allows you to get mask insurance and try out different masks, it is absolutely worth it. I was convinced I was going to feel uncomfortable and suffocated for the rest of my life until I finally tried my 4th or 5th mask, and now I barely notice it (I ended up with a nasal pillow, with the tube going out the side--great for side sleepers or people who move around a lot).

#1 Stay away from Apria Healthcare for your CPAP supplies..I had several years of insurance nightmares, over billing, lost orders, etc...terrible company...I now use CPAP USA ..they are very good.   #2. Give it time to get used to your mask, like any major change, it will require time to get used to sleeping w mask on.  

1. CPAP treatment is better than no treatment, but address the underlying causative factors first (excessive weight, late-night eating, nasal obstruction, consider dental malocclusion as well).

2. Try to obtain a Sleep Dr. that is also ENT qualified or working closely in tandem with your ENT.

Adjust the straps by small increments.

I do this in the day time so I am not too tired and frustrated.

Then I lie down with the mask on and the CPAP attached to check for leaks.

If it is too loose you, will hear and feel air escaping from the sides of the mask.

If it is too tight, it might be uncomfortable.  So loosen the strap (s) ever so slightly.

Also, the straps may need to be adjusted again after washing and drying the straps and over time the straps may stretch out.

Good Luck and Don't Give Up.  If you don't success the first time, try again the next day.

Hello,

I would say that one crucial key to success is the mask.  You can't assume that a mask will be good for you because it is recommended by a lot of people.  Everyone has a unique face shape and this is crucial to having the right mask for comfort and leak prevention.  Buy masks on a trial basis and try a lot of different ones to find your favorite.  Replace your mask cushion monthly as it will be covered by insurance.

If you possibly can, get an automatic machine so you can see results daily and so you can make adjustments and so that you only get the amount of air you need. 

Get in the habit of wearing your mask every night without fail.

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 

The seal is the most important thing.  Lift up your mask so it can seal properly.  If it doesn't you probably need to adjust your straps.

 

 

I've been a CPAP user now for 1 year.  I wear the full-face mask.  When I first started using it, it left horrible marks.  I went online to see if there was something I could get.  Just 6 months ago it was not covered by Medicare of United Healthcare but it is now;  cloth liners.  Here is where I first order them:  http://www.remzzzs.com/default.asp but I contact Medicare and they now pay for them as well.  The next thing I am going to see if Medicare can change is how often one can get the head gear.  I feel one a month would be good because mine seems to stretch out so much that I'm pulling it tighter and tigher by the time I can get a new one.

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