Will I Ever Get a Restful Night?

As I sit her typing this and recovering from my nasal surgery I had last week I can't help but wonder if I will ever sleep well again. I am completely envious of the stories I read here where people get their cpaps and are getting a good night's sleep right from the start or with a little tweaking.
I'm almost a year into using mine and with the exception of fewer night trips to the bathroom have felt no other benefit from it. I continue to use it every night all night but I am desperate for that "wake up fresh" feeling I should have. Instead it's wake up with a headache and if not for daily activity would fall asleep in a minute.
After my last trip to my sleep doctor, I was getting the distinct feeling that he has no clue what else to do for me. He suggested raising my pressure from 14 to 15. I told him that there was no improvement when I went from 12-14. I agreed to go with the 15 and he told me that he didn't know how to adjust my paticular machine. (he wasn't the same doctor that prescribed it). That's when he looked at his watch and told me that I was cutting into his time he needed to prepare a speech he was to give that night. I was dismissed. I have since learned to adjust my machine and have tried it at 15 and I think it was even worse. I came back down to 12 which seems a little better.
I am still using the Remstar Plus with the mirage FF mask. My concern is where to go from here? I have received more interest and help from this forum than all the doctors I have seen but still desperately seeking a restful night. I will be looking for a different doctor to start with. What do I look for in qualifications for a good doctor. What should be his specialization? I suspect this last doctor I was seeing was a psychotherapist who was diagnosed with OSA and became interested in it so he bought some books and advertised himself as a sleep specialist. Should I ask for him to prescribe a autopap with cflex that I hear talked about on here. Please Help!

I have just begun to read and post to this site. I really love it. I've been on CPAP for 6 months with only marginal improvement. But getting an APAP helped and seems to be helping more. If for anything my APAP has software that tells me how I slept the night before. This has helped me mentally and emotionally because it takes the guess-work out of it. I have the power to make adjustments as I see fit and not wait on some do-nothing doctor. What else are you doing to take control of your health? Are you eating right? Taking vitamins? I think for some of us, this takes time. We didn't get here overnight and we're not getting out of it overnight. Let's be persistent and patient.

DCTom wrote: .... I think for some of us, this takes time. We didn't get here overnight and we're not getting out of it overnight. Let's be persistent and patient.

I think DCTom is so wise. Now, if only I can be so patient.
Good luck to everyone!


Linda

As a newbie, I can't offer a lot of advice. But to me, it seems that a year should be enough time to get some benefit. I would think you should be feeling more rested.
From what I read on this forum, most seem to love their auto paps with C flex. If you can afford it, get your doctor to give you a script for one. While you're at it, get the card and reader. I don't have one myself, but if I found myself in your shoes, I'd find a way to afford it.
I think you are probably having a lot of leaks or something that is keeping you from getting good therapy from your equipment. The only way to find out if that is correct is through the software. You can post your readouts here in this forum, and there will be several really smart knowledgeable people who can tell you what is happening to you during your therapy.
Just my humble two cents worth.
As far as a new doctor, if you can find one that will interpret your information once you get the card & reader, so much the better. At least he would know whether your pressure is therapeutic, how many leaks you have, and whether you are still having apnea events. (which is what I suspect.)
I am so sorry you aren't getting better. Hang in there.
Betty

photogal wrote: As a newbie, I can't offer a lot of advice. But to me, ...... Just my humble two cents worth.

Horsehockey, Photogal....! You may be a "newbie" but you give great advice and encouragement to people. .... Don't sell yourself short. Your advice is terrific. Advice from newbies, oldbies, anybodies, it doesn't matter. It's all great advice!


Linda

LDuyer, I'm only trying to give back what I've been given from all of you.

I finally got a descent sleep last night,

Sleepless,
Another thought I had. When you got your equipment, did anyone show you the proper way to put on the mask, and how tight to adjust the straps? Or was it like it was with me. She slapped a mask on me, it whistled, so she yanked it off and put a large on. The large didn't fit but didn't whistle, so that's what I was sent home with. She basically showed me how to take off the soft interface for washing and how to put it back on the mask. She never had me put the mask on while she watched, or told me where the bottom should fit, or anything.
I was left to figure out that the mask was way too big when I couldn't stop the leaking.
This was with the Ultra Mirage FF like you have.
I insisted on trading it for a medium, and at last, I have a fit. Leaks can stilll happen, though, if you don't put the mask in the sweet spot or tighten the straps enough.
If you sleep on your sides quite a bit, the mask can be pushed askew sometimes, and develop a leak. I do that sometimes.
Was it explained to you the importance of having your face freshly washed and to have the soft plastic interface of the mask washed daily? Oils from your skin, or applied from a jar can effect the seal. I wash my face shortly before bed, put on a squeaky clean mask with lotionless hands.
I recently got the Swift pillow interface, and am switching back and forth between it and the Ultra Mirage while my nostrils get used to pillows. I can actually apply moisturizer to my skin before bed with the Swift.
You may know all of this stuff, and if you do and I'm preaching to the choir, ignore it!
Betty

Photogal is catching on fast. Good advice written above.

I think I finally got a truely good night's sleep last night. Its only taken a year and a half, reading untold hours of apnea forums (and asking questions), and trying EVERY trick in the book....lets see......fer instance...
A pile of masks.
Rotating nightly between two masks (Swift and Activa and expect that to change)
A pile of now obsolete chin straps and now a DIY tongue posititioner and much time practicing blocking mouth leaks with my mouth open. (Yogis have nothing on Apnea folks)
AutoPAP
Several sleep studies
Dropping my pressure after surgery much lower than I would have thought.(doc told me to do that one)
3 hours of nasal surgery
Heated humidifier
Heated hose...double insulated
AYR gel...on the NOSE and Swift.
$200 of overpriced software and card reader and looking at my results EVERY day.
Mask and face washing routine. (Castille soap is good stuff)
Saline rinse of sinuses ever since surgery.
Anticonvulants for Restless Leg Syndrome.
Special pillows
Special hose routing
Special mods to masks and how to wear them.
One aspirin and 1.5mg melatonin at bed time.
What am I forgetting?

And I am STILL debating other machines and interfaces...just to see if it gets better.....

The only way I got rid of the noise and leaks was with something I made, plus I made new head gear for my Mirage FF.

I did sleep rather well last night.

I hope I can get the same kind of sleep tonight.

Wow, thanks for the great advice and support. I've said before on this forum and I will say it again. It makes all the difference just to have a group of people that know and understand my concerns. If nothing else than to hear my complaints and lend a sympathetic and listening ear.

DCTom and photogal, I will certainly check into getting a prescription for autopap with c-flex. Tell me more about the card and reader. Is that what makes it possible to see the results of my sleep patterns? Does it use my home computer? It sounds like I'm a perfect candidate for the Apap. Right now I feel hopeless because I don't know where to begin to figure out why my treatment isn't working. The Apap, as DCTom says will take the guess work out of it and give me power over my treatment. Photogal, because I do sleep mostly on my side, I suspect leakage is part or possibly all of my problem. My experience with the training of how to use the mask was similar to yours. It's apparent that the person showing me doesn't wear one of these masks every night. I read here that the mask might not be tight enough, or it could be too tight and cause leaks also. I've experimented with different settings but without something like the software offered with Apap I have no real conclusive way of determining whether my sleep was a little better or a little worse. I can only conclude that it's still not what it should be. I hope that makes some sense. I know I can do a better job with the face washing and mask cleaning just before bedtime.

Snork1, I appreciate your list of all you've been through with OSA and can only say that I've got a long way to go to compete with your list but it did make me realize that I can't just throw my mask on every night making no changes and hope for better results. I guess that I'm just not a very good troubleshooter when it comes to my sleep. I'm an electronic technician so maybe I should apply what I've learned about troubleshooting electronic equipment to my sleep habits.

Severeena, congratulations on your good night's sleep. It gives even me hope.

Mark

Sleepless, I can't help you on the card/reader as I don't have one. I asked for one, but my evil DME said "There are so many different machines/programs out there that we can't possibly be expected to have all of those on our computers," and refused me. I could get them on cpap.com, but I'm having surgery tomorrow and that will cost us enough without my adding other expenses.
All I know is about what I read on the forum, so you guys with the cards jump in here and help Mark.
But yes, the card/reader will tell you just what is happening during your sleep. I don't know about the computer end of it, but I assume you can load it?? (Come on, people) The thing is figuring out what the terminology means along with the numbers. That's why I said there are people here who can help with that.

The Encore Pro software for my Remstar auto loaded onto my XP computer system and uses a proprietary funky double connector serial port card reader.

I don't understand how anyone makes timely headway on solving CPAP issues without it. I look at my results from the night before every day. That way I know if I really had a good night of CPAP or maybe it was something else affecting me for better or for worse. Then I can try a different variable and separate out the variables one at a time. For a technician type person it should feel like any standard diagnostic tool.

I had to take in hard copies of printouts to my doctor before he would finally get the software loaded on HIS machine.

Thanks Snork1 for helping me to understand what the reader does and how it works. I agree that is what a technician like myself could make good use of. Its hard to troubleshoot a problem without the data to back up the problem and this will give me the data that I need.

Thanks Photogal for sending out a plea on my behalf.

Mark

Just a note - for the Respironics/Encore card reader, it is possible to get in either a serial port or USB port reader - unless you don't have a USB port on your computer, definitely get the USB interface. I concur with what has been said. Without feedback, it is just hit and miss whether changes you make are making things better or worse. Knowledge is power!

I too read my data every morning. My assumption is that if the numbers look good on a consistent basis things will improve.

The night before last, I didn't use my mask at all. I had an allergic reaction to something and my face was way swollen and itchy and I decided that the mask would only aggravate things. I could really tell the difference this morning, back on the mask. So, for me, the improvement has been very gradual and only really noticable when I did a night without xpap.