Don't like it much...

[IFLEW]

I have been using a Respironics Remstar Plus CPAP for just over three months. I also have their heated humidifier and Optilife headgear and nasal pillows. It is more comfortable than I had anticipated but even though I sleep much better I really dislike the process. I can't hear the birds when I wake up in the morning, can't talk to my wife, and always am dragging that hose around when I want to change sleeping positions.

Most of what I hear on this board is happy talk. Are there others out there who dislike the treatment as much as they disliked the sleep deprivation? The other down side is that I really do not feel the "burst of renewed energy" that many speak of. My CPAP is set to 12 and I have experimented as high as 14 and as low as 10. I really think they have hit the sweet spot for me at 12 so I put it back there and left it.

What are the alternatives to CPAP as treatment and has anyone here tried them? I have another appointment with my sleep doctor next month and I think I am going to find the best ENT surgeon I can find and see what he says after that appointment.

Thanks in advance for replies... this site has been very helpful... like telling me how to adjust the pressure, clean the mask, etc.

Later,

Ed Badenell

[Wulfman]

I have been using a Respironics Remstar Plus CPAP for just over three months. I also have their heated humidifier and Optilife headgear and nasal pillows. It is more comfortable than I had anticipated but even though I sleep much better I really dislike the process. I can't hear the birds when I wake up in the morning, can't talk to my wife, and always am dragging that hose around when I want to change sleeping positions.

Most of what I hear on this board is happy talk. Are there others out there who dislike the treatment as much as they disliked the sleep deprivation? The other down side is that I really do not feel the "burst of renewed energy" that many speak of. My CPAP is set to 12 and I have experimented as high as 14 and as low as 10. I really think they have hit the sweet spot for me at 12 so I put it back there and left it.

What are the alternatives to CPAP as treatment and has anyone here tried them? I have another appointment with my sleep doctor next month and I think I am going to find the best ENT surgeon I can find and see what he says after that appointment.

Thanks in advance for replies... this site has been very helpful... like telling me how to adjust the pressure, clean the mask, etc.

Later,

Ed Badenell

Hi Ed.

Welcome to the forum.
You mention CPAP (REMstar Plus) in your post but your profile shows the Bi-PAP Plus.
Too bad you don't have a data-capable machine. If you did, you might KNOW what settings work best for you.
I never got the "burst of renewed energy", either......just gradual improvement.
I'm sure an ENT could do wonders in my nasal passages, too. But, unless or until things get worse, I'll be hosing up every night. I still might need CPAP after surgery, so I'll stick with what seems to be working best for me. Besides, I've got a good deal invested in my equipment now......and I can't seem to sleep WITHOUT it.

After four years, I don't mind the "process" (routine). It beats many of the alternatives.....including pushing up daisies.
I get up and go outside when I want to hear the birds and my wife usually does most of the talking anyway.....so, I'm not feeling deprived in any way......especially for oxygen, which I was lacking in my sleep, previously.

Good luck.

Den

[carbonman]

Ed, welcome to the forum.

viewtopic/t41592/viewtopic.php?f=1&t=41316&p=362720

Don't know what else to tell you.

[mdbarthe]

Hi, Ed

Let me also welcome you aboard. I was one of the lucky ones who felt terrific right off the bat when I began my therapy a little over 2 years ago. Since then I've had some ups and downs with how I felt, but by having the data capable machine, I can see exactly what's going on with my therapy and make gradual adjustments which make things even better.

I doubt there is any of us on this forum that would choose XPAP therapy over just being able to lie down each night, sleep well, breathe well and function normally. BUT........that's not the case. We need the therapy to keep our health in reasonably good condition and mitigate the many OSA-related conditions some of us got because we didn't get on XPAP therapy sooner. We either use the machine every time we sleep or we slowly deprive ourselves of oxygen which destroys the regeneration of cells that maintain our vital organs like our hearts, lungs, pancreas, liver, brain, etc.

I had the surgery which was sold to me as the "end all-be all" to stop my snoring and cure my OSA. The surgeon got rich and I can now have everything I drink come out my nose if I fail to swallow just right. It stopped my snoring for about 2 months and then it was back to the pre-surgery sleep disorder. It was also EXTREMELY painful and took me a month to quit having a sore throat. In my humble opinion, surgery is a waste of money and time.

Stick with your CPAP therapy. In most cases it takes patience, perseverence and time to get used to the things that make it a challenge in the beginning. Giving up is choosing to slowly suffocate your vital organs and waste your health. Good luck!!

[6PtStar]

I second what Wulfman said. Most of those that have the surgery still have to use the cpap. Sometimes it lowers the pressure but if you are trying to get rid of the hose your chances are very slim despite what the surgeons tell you. Some time it makes things worse because they remove part of the pallette and makes it so with the machine it air comes out the mouth and you can no longer use anything except a full face mask.

I wish you had a cpap that collects data so you could tell when things are working. My pressure set by the study was off by 2cm/h2o. Made a lot of difference when I started looking at the data and reseting my machine to it. I did not get a "burst of energy" but after about 6 months I started really feeling like I returned to the living.

Jerry

[Froro]

Hi Ed. I'll be honest. I don't much the whole process of it either.

I totally get the not talking to spouse thing but I'm starting to figure out how to "almost" talk if I need to. If it's something that needs more than a word or two I just turn the machine off and we have a chat. For me that works and since this is the first time in five years we've actually been in the same bed the entire night it's actually an improvement....how many of those conversations, however brief have not happened as a result of me being elsewhere. I have a pen and paper beside me on the nightstand now so I can let either husband or the kids know what I need to tell them.

I don't know your machine so I can't comment on the bird thing. I do hear the birds and it drives me crazy at 5:30 am. Could you perhaps switch machines to a quieter one? Are you renting it or did you buy it outright?

I'm one of those happy posters as I have seen a huge improvement in my entire life as a result of getting sleep but there are days I still feel pretty punch drunk. I try not to dwell on it and just accept that it's going to happen once in awhile. What does your data tell you, or do you have access to it?

I do wish I wouldn't have to go through the bother of all of the routine every night to be truthful, but on the other hand, I know my health is more important than the nuisance. My husband goes to bed earlier than I do so I need to ensure I'm in my jammies (which is also a new thing for me), have got everything ready to go and organized on my nightstand so I can come in and disturb him as little as possible. I snagged one of my kids nightlight flashlights so I can attempt to get myself sorted out without turning on lights and stumbling about. Last night I was so comfortable on the sofa I literally was ready to just stay there but I got up and got the gear on. I still feel like an alien in my own bed and completely unattractive, and while I know it's stupid and superficial it's a real part of who I am. Husband is fine with it all but I'm not there yet. I'm not thrilled with much of this process and investigated surgeries etc, but given the success rate of those surgeries I'm not willing to go through that on a 50/50 chance.

I don't know what I can say to you to make you feel less frustrated but know that there are so many here that completely empathize with you and understand. I was so excited at the beginning when I felt incredible, only to be followed by a drop in adrenaline I think and reality set it. My first two weeks I was like the walking dead. All I did was sleep and while my numbers were great, my body was just a blob wanting to go back to bed. I think that old sleep debt is finally paid off now and I have maybe one bad day for every 6 good days. I think knowing what your data says is probably one of the best indications of how your therapy is going. If its all good perhaps there is something else going on as well that needs to be investigated. Good luck to you! I"m still new on this too (almost two months now), so I suspect the Routine will become less foreign to me as time goes on.

[Wulfman]

Just a note with regard to my first post.

I was actually thinking about turbinate and septum surgery when I was writing my post. NOT UPPP!
I would NEVER have that done. I've heard too many horror stories in the last four years.


Den

[alnhwrd]

Ed,

Congrats on three months of treatment! I don't know that anyone "likes" it, we just dislike the alternative. It's not just about how how we feel, although that can be part of it. If you have sleep apnea and are treating it successfully, then you are not being damaged by low oxygen levels in the blood and blood pressure and heart rate spikes every night. Since many of us have been untreated for many years, it can take some time for our bodies to heal and for the benefits to become evident.

Most of the things that you say bother you about CPAP can be dealt with. I have learned to close off my passages so that I can speak without the air blowing out of my mouth. I tie my hose off with a couple of Command hooks on the wall and the head of the bed so that it comes down right over the top of my head. This way I can move freely without dragging the hose around. Maybe the birds in Oregon are tougher than where you live, because I can hear those little buggers chirping their guts out every morning! But if the noise of your machine is too loud you can try putting it down on the floor or in a drawer next to your bed or even a customized styrofoam cooler with airholes cut in it.

Unless you have insurance that pays 100%, you can probably pay for a fully data capable CPAP machine instead of surgery and come out ahead. The problem with surgery is that its effects are often irreversible. Personally, I would like to know for certain what was going on with my CPAP therapy before taking that step. I have no personal experiance with any surgery, but I have read of several horror stories about it and lots of dissatisfaction with the results on this site.

Best of luck to you!

[IFLEW]

Thanks to everyone who replied... I will see if my doctor will prescribe a recording machine at my next visit. He is not too open to suggestion... maybe time to change doctors. I have read that the auto machines with recording function are a lot better for patient awareness. Some doctors are not as interested in our awareness as others.

I have medicare so this is a rent to own situation... and fortunately the payments are not a problem after my supplemental insurance. I can only think how I would feel if it were both a financial and emotional burden.

Truthfully I guess I am not as frustrated as that first post sounded but I wondered what the sentiment was about this situation...

Again... Thanks.

Ed

[JimW203]

This is a club/crew/mob NOBODY ever wanted to join. But like the press gangs of old, the choices were few and decidedly less appealing. Just think of it as an opportunity to live a little longer (with a new, part-time umbilical cord).

JimW203

[kteague]

Ed,

Again, welcome. Maybe your doctor would be more receptive to ordering a temporary loaner for a couple weeks of an autopap to retitrate you to be sure your pressure is therapeutic. When I was in your position my doctor did at least do that much, but only at my insistence. Ended up buying a used one one my own. While the auto can be good, even a straight cpap that collects treatment data would suffice if you were inclined to check out used machine prices.

Oh, I'd rather not have to use cpap, but my apnea is severe so the chance of surgery helping is almost nil. Have 3 personal friends who had the UPPP and their results didn't sell me on it. I don't know if your apnea is mild, moderate, or severe, but that can make a difference in the odds of surgery or oral devices being effective. Nothing wrong with checking out your options. If you try anything else, just be sure it is working and not make assumptions. Of course, that's the same thing I say about cpap or any other medical treatment.

In the meantime, those little tweaks we can make to improve those things that irritate us can make the difference in tolerance. Hope you figure out what things work for you.

Kathy

[robertmarilyn]

Truthfully I guess I am not as frustrated as that first post sounded but I wondered what the sentiment was about this situation...
Again... Thanks.
Ed

That fact that you have been using the machine for 3 months puts you way ahead of other folks who don't like it much...good job hanging in there!

There are several surgical options but they should be last resorts....I have had an UPPP and even though 15 years later, I still have sleep apnea, I have probably been one of the more successful UPPP operations...but don't get one unless absolutely necessary! It hurts...and you may still have sleep apnea. And there are still more radical operations...I have one of them sitting on the back shelf of my mind in case it is the only option left open to me...but believe me...most folks don't have all my problems.

I have a feeling that by reading the posts in this forum, you may find more ways to make XPAP more tolerable. And really, I know it may be hard to believe, but I envy you if XPAP is working for you at all...there may be a few folks who it doesn't work for and they would give anything to be able to use it successfully.

Welcome to the forum,
mar

[Kiralynx]

This is not a club I wanted to join -- I'm claustrophobic, and the thought of sleeping with STUFF all over my face was petrifying. However, I was diagnosed because of chronic pain. Once I determined that sleeping properly with my Beastie allowed me to get through the night without pain, that was all she wrote. Everything else became dealable.

My husband used to come kiss me good-bye in the morning and I'd wish him, "Safe traveling." He still gives me a kiss good-bye, and I signal a "fingers crossed" for "good luck" and then a horizontal wave of the hand for traveling. The latter gave us the giggles when we developed it, because our local streets are so bouncy, and it looked like "Good luck bouncing over the streets!"

You must have quiet birds! The ones around here warble so loud I can hear them over the machine. Well, that's assuming my Shadow-goof, aka, a standard long-hair dachshund, doesn't decide to bark at them. Then I can't hear anything except, "Wharoof!"

[sam1234]

I was thinking along similar lines yesterday. I was thinking how much I hate to go through the process to go to sleep. I am not sure whether or not it is the mask, hose, machine noise, or just sleeping. I do know that I cannot sleep or even lie flat, without the machine. Once asleep, I would rather stay asleep.

Stay the path. It's not so bad.

[elader]

I swear it was only last week when I posted about cpap changing my life. This week, I am feeling like crap. Data from the machine does not enlighten me. I ordered an oximeter. I am interested in seeing if it sheds any light on my plight.

As a scientist, the randomness of good days/weeks vs bad ones with no apparent correlation to my data really irks me. I simply have no idea why my treatment seems great sometimes and terrible other times.

But of course I hate the whole mask thing. What alternative is there?