I'm Out

[elena88]

It is unfortunate that you have been to the doctor over ten times and you have not found a solution, but
that is actually to be expected. They really just want you to comply and get over it..

YOU are the only one who is going to manage to figure out how to get this to work.. you cant rely on anyone else..

My doctor told me I would have to try at least a dozen masks to maybe find one that would work..

I have been at this since march, and I have not had a good night sleep either, and I was never tired before cpap either..
.. I read the posts of people who come back after a year with success
stories.. but if you need a break take one, but then YOU take charge.. you figure out what mask you should get..
You dont breath thru your nose, so concentrate on oral masks only..

I cant find the one that you just stick inside your mouth with NO headgear, but that might be a great one for you.. its out there..

What is your ahi? how badly did you desaturate? maybe you have very mild apnea, can you let us know the details so we can help you?

Im on my fourth machine in five months, Im on mask number six, I havent slept well either.. it sucks, I know, I feel worse than I ever did before
cpap, but Im not giving up yet.. I had to take some breaks.. some nights I dont sleep with it, some nights I can get thru a few hours, then I have
to give it up.. I was never so happy to have a power outage a couple weeks back so I could go a whole night without out.. so I GET IT.. really...

You need to put it away a few days, and get some rest. YOu are not in a good place right now.. Come back after you get some sleep...
we will help you figure it out..

[chunkyfrog]

CPAP is the first choice in most cases, as it is noninvasive, and the only method since tracheostomy PROVEN to be consistently effective--
and insurance and Medicare cover it. (if anyone disagrees, speak up, please)
Alternatives--it depends on your individual circumstances, your insurance, and, as I have heard, a lot of luck--
as there is almost no way to tell the gifted pioneer from the charlatan.
Sorry; but if anyone has heard of a viable alternative, you should hear from them within a short while.
In the meantime, please don't give up--it is a royal pain until you get all the kinks worked out, but it is worth it.
This forum is full of successes and frustration.

[DreamOn]

Also, it wasnt the dying so much I was worried about, it was when someone asked me who was going to change my diapers when I had a stroke..
that stung...

Those motivating words were written by BlackSpinner. Since stroke and heart attack are two of the consequences that can occur with untreated sleep apnea, it does put things into perspective, doesn't it?

I can certainly understand your frustration, Annoyed. It sounds like you have tried a number of masks. I had to try about 15 before finding just a few that do work for me. Many people have had success with the Anti-Leak Strap made by Karen at Pad A Cheek: http://padacheek.com/PAC_AntiLeak_Strap.html. It was designed to minimize leaks with the Quattro, Ultra Mirage Full Face, F&P 431, F&P 432, F&P Forma, and Comfort Gel Full Face masks.

Many mask problems can be fixed by using the tips found here: viewtopic.php?t=15104.

You mentioned that you have the "Resmed System One machine." I assume you meant the PR System One machine. Which model do you have -- the PLUS, the PRO, or the AUTO? If you have the Pro or Auto, which are capable of reporting full data, have you learned how to check the results data on your machine, to see if your therapy is effective?

Sorry I can't help with your question regarding alternative treatments. I have mild/moderate sleep apnea and a dental appliance was suggested to me as an option. CPAP is considered the Gold Standard for sleep apnea treatment, so that's the route I chose. It's worked very well for me.

[LoQ]

I went to the doctor as my wife had been complaining since before we were married about my snoring. I was never overly tired or anything like that. I am overweight and can't seem to lose it. So I did the sleep study and I was dianosed with obstructive sleep apnea.

I was put on CPAP in June and I haven't had a good night sleep yet. Been back to the doctor's 10 times to get help with masks and fittings. Every full facemask that I have used leaks into my eyes unless I tighten the headstrap to the point that it leaves welts on my face. I have tried a hybrid mask and the nose pillows tend to start leaking after about an hour of use.

I am exhausted and am stopping this stupid CPAP thing so I can actually sleep. What alternate treatments are out there for somone like me? I want to be prepared when I talk to the sleep doctors as I don't feel they have helped me at all. Most of what I learned I read on this site and then questions the doc and there techs.

DreamOn had a pointer that eventually leads to this excellent suggestion--I have used this trick myself, and it works very well:
viewtopic.php?p=227972#p227972

[jweeks]

I am exhausted and am stopping this stupid CPAP thing so I can actually sleep. What alternate treatments are out there for somone like me?

Hi,

There is a pretty sure-fired surgical option that doesn't involve CPAP machines. It is called a tracheotomy. Doctors open an alternate airway, and you can breathe normal air pressure at night. You plug the hole during the daytime, and you can breathe and talk like you always did.

-john-

[SnoresLikeWalrus]

I was a mouth breather all my life. Snored like a walrus. Was convinced I needed a full face mask or hybrid so i could breathe through my mouth, but they both made my mouth feel very dry and were covering too much of my face to be comfortable. So I tried the Swift FX, and lo and behold, with this mask on I am breathing through my nose and my mouth stays closed. When I take the mask off in the morning and nap another half hour or so, i continue to breathe through my nose with no snoring. I know some don't think a person can be "retrained" to breathe through the nose, but it happened to me. My AHA is 1.1. No major leaks.

I feel a LOT better breathing through my nose, I can tell you that.

I'm super glad I tried it just to see if it would work. you just never know.

[syzygy]

If you have a deviated septum, you might consider a septoplasty and turbinate reduction. I'm just starting with CPAP, but I've noticed that it's much easier to tolerate now that I've had my own nose problems fixed.

[elena88]

while you are taking a much needed break, and I really think you should..

here is a link about surgeries for sleep apnea.. it may make the grass look a little greener to get the cpap to work..
http://www.sleepapnea.org/resources/pubs/osa.html

One surgery that sometimes works besides the tracheostomy is the MMA.. but its the sort of surgery one might have they went thru
the windshield in a horrible car accident.. and needed thier broken jaw rebroken and fixed.. they cut your jaw bones and advance them forward..
might as well have a half of a face transplant.. There is an age limit on it, and few doctors know how to perform the surgery.

so yes, there are other alternatives, but no surgeon will even talk to you having been on cpap since june.. not long enough..
I havent seen many people show up here, and yell "yahoo, guess what, my surgery worked, and I dont need my cpap anymore!"

I think you just havent found the right mask or machine.. and thats a recipe for disaster.. no wonder you have had it.. and its gotten
so BAD..... not getting enough sleep can make your life suck beyond imagination..

hope you get some sleep tonight, naked.. w/o the machine..

[sleepycarol]

I disagree that going "naked" to get a good night's sleep is okay.

Depending upon the severity of the sleep apnea and the amount of oxygen destat one night just might be the deal breaker and as blackspinner noted -- stroke, heart attack, death, or any number of other not so good alternatives.

If you tell yourself -- "oh one night to catch up on my sleep won't hurt". Who will be there for your family when things go south on you? Will your partner or children take care of you? Do you have a good idea of what it cost to be in a rest home? How much funerals are these days? Those are things you need to think about.

It just way too easy to justify going without it for "few" nights of "good" sleep that the machine ends up in the closet or trash can after a period of time.

Yes, I know you are frustrated -- many of us have walked in your shoes. ATTITUDE is so IMPORTANT when starting out. Focus on the positive aspects of treatment instead of the negative.

Remember it will get better if you give it a chance.

[elena88]

I agree sleepy carol, but it sounds like his personal life is going down the toilet..

I mean, dealing with THAT can break up a family as easily as a death..

If he has severe osa and terrible desats and heart problems, that is another story, but he hasnt given us any information that he
is severe... maybe he is..

I dont know..

I just know what happened to me, and had I not taken a break from the machine, Im afraid of what might have happened..

and none of it would have been good..

Anyway, the title of his post is IM OUT.. and this isnt the best place to come to be talked OUT Of cpap, as we are all pro cpap.. for good reasons..
Its a shame he hasnt gotten the help he needs, but if he sticks around, maybe he will..

[kteague]

Two to three months in this situation can feel like an eternity, but in view of your lifetime, it's another perspective. I was one who quit for a while, but was too scared by repeated wakings of gasping for air with my heart pounding to not try again. I can say from the time I started back, I've never intentionally slept in the bed without the mask and machine. Never mind the times I fell asleep with the mask in my hand, or woke up with it beside me on the pillow, or threw it against the wall in frustration in the middle of the night and gave up and sat in the recliner all night. But every night I approached it with the anticipation that this just could be the night that would make it all worthwhile. For me, I saw no other choice. I knew 3 people who had not had successful results with surgery, and TMJ would not allow me to use a dental device. It took a long time and much effort, but one night my expectations were realized.

I know that doesn't matter much to you in the throes of your misery. Just want to suggest you do as others have suggested and know the facts before making a decision. First, data would be good, if you have that access. And for your own knowledge, do look at your report in black and white. Know how many events you experience, how long each lasts, and how low your oxygen goes. Do implement tips you find here. I did, and it made the difference for me. Just about any battle one can encounter has already been fought. Hose management and a firm sleeping pillow can help with leaks. There's a lot of successful side sleepers here. I have used an extra strap made from whatever I have available to stabilize my masks, and it really helps with leaks. Just be sure to not position the strap where it can slide and block the vent. It may help you to use lower pressure if you incline the head of your bed a few inches and be sure to stay off your back.

[nobody]

I am a side sleeper and can't keep the masks from leaking. Also my mouth is always bone dry even when I have the humidifier set to 5.

That's probably because you're getting a lot of leaking (or something is wrong with the humidifier). Do you have facial hair? I can't get a good seal on the quattro if I don't shave. Also, make sure you wash your face before putting the mask on. It's best to use a soap that doesn't have any lotions in it. I use that neutrogena soap.

To answer your questions, except for getting a hole cut in your throat, the alternate therapies rarely work, and when they do usually only for people with mild sleep apnea. I think you should keep at trying to make CPAP work. If you need to take a break from it then do it, but keep trying to come back to it. Try to sleep at least a couple hours with it and work your way up. Stay on this site and ask for advice from people here, there are many people who have been through their own situations and I'm sure together we can help you figure out how to make it work. Part of it is just plain getting used to it, but another big part is to get everything set right.

[BlackSpinner]

No one has mentioned how to sleep on a pillow on ones side yet. You sleep on its edge with the mask hanging over it. Some people take a foam pillow and with a bread knife shape it to give them more neck support by cutting a curve into it for the mask.

The hybrid should work for you. It is incredibly adjustable since it comes with 3 sizes of mouth pillows and 3 nasal pillows and 3 adjustments. Many of us add another strap of lycra fabric across the pillows to keep them in place so that the upper strap doesn't have to be so tight. It is very complicated to fit but it keeps the air out of your eyes and your mouth mostly shut. Nasal rinsing before bed also helps with breathing through your nose. You will find that wearing the cpap 8-9 hours a night especially using a mask like the hybrid may dramatically reduce your allergies and heal your sinuses.

[Gerald]

Annoyed.......

From what you said in your initial post, the problem you're experiencing is very clear to me. The problem is not mechanical....it's psychological. I don't think anyone has actually told you "why" you need to wear the mask and put up with the "stupid" CPAP ordeal.

You're not convinced that you need CPAP.

You don't need it to prevent snoring. You don't need to do it to please your wife. You don't need to do it to get a "good" night's sleep.

Here's what you need to know: Snoring is only a symptom of big problems that'll kill you. If you aren't interested in living as long as possible, quiit CPAP.

CPAP's purpose is to help prevent suffocation while you sleep. Your airway is collapsing while you sleep.....and you aren't getting enough O2.

Get your hands on a recording Oximeter with good software....and check your blood O2 saturation levels every night for two weeks. Print out a report after every night's use. After two weeks, look at all the data to see if your O2 levels are falling below 93% during the night. If you see that you're quite often below 93%, "get with the program" or purchase a burial policy so your family won't be inconvenienced by your funeral costs.

If you decide that CPAP is a better alternative than an early death, decide to take charge of your therapy. You can't go to the doctor for "mask adjustments" and other assorted forms of "hand holding". You've got to do it yourself. The people on this forum are busy managing their own therapy....they tweak their masks....they modify straps....they come up with all sorts of ideas to make their therapy pleasant and effective.

Your doctor and his technicians will "go thru the motions"....but they're not going to be the "magic solution" to your problem. You've got to be interested enough to get a top of the line CPAP machine with software and a good quality Oximeter with software. Then you have to be determined enough to defeat suffocation by using that software so that you....yourself.....can achieve success by monitoring your therapy so that you achieve maximum effectiveness.

If you aren't interested in making the effort, chunk the CPAP machine in the nearest dumpster....and put your affairs in order.

[SleepyT]

Annoyed.......

From what you said in your initial post, the problem you're experiencing is very clear to me. The problem is not mechanical....it's psychological. I don't think anyone has actually told you "why" you need to wear the mask and put up with the "stupid" CPAP ordeal.

You're not convinced that you need CPAP.

You don't need it to prevent snoring. You don't need to do it to please your wife. You don't need to do it to get a "good" night's sleep.

Here's what you need to know: Snoring is only a symptom of big problems that'll kill you. If you aren't interested in living as long as possible, quiit CPAP.

CPAP's purpose is to help prevent suffocation while you sleep. Your airway is collapsing while you sleep.....and you aren't getting enough O2.

Get your hands on a recording Oximeter with good software....and check your blood O2 saturation levels every night for two weeks. Print out a report after every night's use. After two weeks, look at all the data to see if your O2 levels are falling below 93% during the night. If you see that you're quite often below 93%, "get with the program" or purchase a burial policy so your family won't be inconvenienced by your funeral costs.

If you decide that CPAP is a better alternative than an early death, decide to take charge of your therapy. You can't go to the doctor for "mask adjustments" and other assorted forms of "hand holding". You've got to do it yourself. The people on this forum are busy managing their own therapy....they tweak their masks....they modify straps....they come up with all sorts of ideas to make their therapy pleasant and effective.

Your doctor and his technicians will "go thru the motions"....but they're not going to be the "magic solution" to your problem. You've got to be interested enough to get a top of the line CPAP machine with software and a good quality Oximeter with software. Then you have to be determined enough to defeat suffocation by using that software so that you....yourself.....can achieve success by monitoring your therapy so that you achieve maximum effectiveness.

If you aren't interested in making the effort, chunk the CPAP machine in the nearest dumpster....and put your affairs in order.

Gotta say, Gerald, I agree with you most of the time....and I most certainly agree with you here. Bravo.