Replies to This Discussion

Permalink Reply by Jan vanNiekerk t SnoringElephant on February 17, 2011 at 2:03pm

From what I know is surgery is a short term solution. The CPAP  BIPAP is the only long term solution. There are somany masks available. From full face to nose pillow masks (fitting into the nostrils) to masks fitting into the mouth.

 

A Lot of it depends on the attitude towards the treatment.

 

Today's discussion is lifely.

 

What dissappoints me is the fact that people want to give up. I was told, after a nose operation that I can stop treatment. 9 Months later I fell asleep behind the car's steering wheel.

 

How many patients have been on treatment stopped it, Those end up with a heart attack, stroke or some heart problems.

 

I go on my knees and plead... "PLEASE DO NOT STOP?"

 

Please pull through?

Mary Callahan said:

From what I've read here, surgery works for some people but not others. Depends on the surgery also. Seems that deviated septms and turbinates seem like the least likely to cause trouble after surgery, but don't do too much to help. More serious surgery has more side effects, but can help some people. 

 

I have been using an auto pap for 2.5 months and still not liking it, especially the noise, and I have a supposedly quiet machine. I have serious insomnia and have been trying various meds to help with that. I use a nasal pillows mask and a chinstrap, and not sure if that is the best for me, but afraid to go to a full face mask after reading about all the problems with those.

 

How long have you been using the cpap machine? Everyone here told me it just takes time to get used to it. I think one can get used to it, but maybe just never like it.

 

jim flynn said:

If I cannot get use to this mask,how about surgery? Does surgery work?

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Permalink Reply by Kaye Eginton on February 17, 2011 at 2:09pm

I use the little pillow nose things and my CPAP seems to run all the time now.  When I turn it off in the morning, it's quite for a minute then you can hear a faint motor running and there is a little of the air coming out, does anyone else have this problem?  Oh, and I used to pull it off like every night and now the only time I do that is when I'm sick, I have trained myself to get up and go to the bathroom or whatever (blow my nose if I am sick) then I make myself put the mask back on and I hold the nose thing until I fall asleep so I can't remove it.  It was terribly hard to get used to though but you can find a way to do it (if I did you can).

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Permalink Reply by Jan vanNiekerk t SnoringElephant on February 17, 2011 at 2:11pm

Ricardo

 

Did the look at your central apnea, If you  snore through your cpap, it is either the pressure or the central apnea.

 

I would suggest that you go back to your specialist. You can also go for a second opinion. (to a medical practitioner please)

Ricardo Lopez said:

I have been using my CPAP religiously for over a year now and am ready to give up.  I have tried 6 different masks and no matter what I try they still leak at the pressure that I need.  Lowering the pressure reduces the leaks but does not work therapy-wise (and I snore quite a bit with the mask on).  Very frustrating!

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Permalink Reply by Ricardo Lopez on February 17, 2011 at 2:40pm

I snore only if the pressure is lower than what I need- which I imagine is indicative of obstructive apnea.  The problem is that every mask I try (full face because I breathe through my mouth) leaks a lot at the pressure I need, which is 19.  Does nayone know of a full face mask that can handle high pressure without leaks?  I would love to find something that actually works.

Jan vanNiekerk t SnoringElephant said:

Ricardo

 

Did the look at your central apnea, If you  snore through your cpap, it is either the pressure or the central apnea.

 

I would suggest that you go back to your specialist. You can also go for a second opinion. (to a medical practitioner please)

Ricardo Lopez said:

I have been using my CPAP religiously for over a year now and am ready to give up.  I have tried 6 different masks and no matter what I try they still leak at the pressure that I need.  Lowering the pressure reduces the leaks but does not work therapy-wise (and I snore quite a bit with the mask on).  Very frustrating!

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Permalink Reply by Mary Z on February 17, 2011 at 2:49pm

Kaye, it's normal for some of the machines to run a bit after you turn them off.  I don't know what the purpose is- drying it out?- but it's normal.

Mary Z.

Kaye Eginton said:

I use the little pillow nose things and my CPAP seems to run all the time now.  When I turn it off in the morning, it's quite for a minute then you can hear a faint motor running and there is a little of the air coming out, does anyone else have this problem?

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Permalink Reply by Brandy Winteler on February 17, 2011 at 2:58pm

I started out with a Comfort Gel full face mask. I hated it. I did some research (checking here and cpap.com mostly) and ended up getting a Hybrid. It was an immediate relief. I'd buy yours, Claude, but I get my mask, tubing, etc at no cost with my insurance.

Anyway, I agree that trying a different mask and working to find what is right for you is very important. Obviously, what works best for one person may be awful for another. I consider myself lucky that the second mask I tried was the right one for me. There have been a couple occassions when I couldn't use it. Once was with a cold and bad sinus pressure - it was just too painful to have the competing pressures and I wouldn't have slept well with or without it. One night, I was in a hotel and discovered I forgot my power cord. I definitely realized that night how much I need my CPAP. I could not get comfortable and it was hard to sleep.

Lately, I have not been feeling well and am having trouble sleeping even with my CPAP, but I think it would be worse without.

 

Claude said:

I too, thought I would never get used to the CPAP, but here I am 7 years later, and now can't sleep without it.  I am a stubborn person, and kept on trying until I found the right mask and pillow to get a good nights sleep.

I just recently had a brainstorm too: I wonder if the nasal pillows would work for me.  So I bought a Hybrid Full Face CPAP Mask with Nasal Pillows, and guess what--nope, I can't stand it.  I feel claustrophobic with it on, and yet, I love my resmed full face mask which covers just about everything. lol. So if anybody would like to buy a hybrid at a good price, I have one :).

Hang in there, try some different masks, and make those Dr's and DME people help you out. That was my mistake up front, I didn't get good counseling and follow up on things like I should have.

Good luck and let us know how it goes!

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Permalink Reply by Mary Z on February 17, 2011 at 3:12pm

Ricardo, I have good luck with 99% 0.0 leaks with the Respironics FitLife Total Face Mask, size large.  Not the one size fits all.  You can look for one on cpapauction under total face msks, or buy it on-line where you can get insurance in case it doesn't work for you.  I've used it up to a pressure of 25, but had to readjust it often.  At your pressure it could work.  Getting a mask to hold with these high pressures is tough.

Mary Z.

Ricardo Lopez said:

I snore only if the pressure is lower than what I need- which I imagine is indicative of obstructive apnea.  The problem is that every mask I try (full face because I breathe through my mouth) leaks a lot at the pressure I need, which is 19.  Does nayone know of a full face mask that can handle high pressure without leaks?  I would love to find something that actually works.

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Permalink Reply by Brandy Winteler on February 17, 2011 at 3:22pm

I tried to add to my post after a bit, but I guess I ran out of time. I wanted to add that I was sure my husband had sleep apnea long before I even suspected I might (I've actually noticed that in the middle of his snoring, he'll stop breathing for a moment, then a loud snort as he starts up again). I got diagnosed and started CPAP at the end of August, got the right mask in September. Husband still snores. He finally has a referral for a sleep study (got a referral in December, but they messed it up and it was only valid for one day. It just got fixed). I think we'll both sleep better once he stops snoring too.

Also, I have issues with the exhaust on my mask blowing on my arm or on my husband (I'm sure my mask won't bug him as much when he gets his own). I've started to get where I can arrange myself and my pillows to avoid that. The exhaust also makes more noise when the hose moves in front of the holes. I've discovered that I've started to cuddle with the hose to keep it away from the holes. Oddly,  it has become a comforting habit to cuddle with it. Not sure why, but at least I'm sleeping.

Brandy Winteler said:

I started out with a Comfort Gel full face mask. I hated it. I did some research (checking here and cpap.com mostly) and ended up getting a Hybrid. It was an immediate relief. I'd buy yours, Claude, but I get my mask, tubing, etc at no cost with my insurance.

Anyway, I agree that trying a different mask and working to find what is right for you is very important. Obviously, what works best for one person may be awful for another. I consider myself lucky that the second mask I tried was the right one for me. There have been a couple occassions when I couldn't use it. Once was with a cold and bad sinus pressure - it was just too painful to have the competing pressures and I wouldn't have slept well with or without it. One night, I was in a hotel and discovered I forgot my power cord. I definitely realized that night how much I need my CPAP. I could not get comfortable and it was hard to sleep.

Lately, I have not been feeling well and am having trouble sleeping even with my CPAP, but I think it would be worse without.

 

Claude said:

I too, thought I would never get used to the CPAP, but here I am 7 years later, and now can't sleep without it.  I am a stubborn person, and kept on trying until I found the right mask and pillow to get a good nights sleep.

I just recently had a brainstorm too: I wonder if the nasal pillows would work for me.  So I bought a Hybrid Full Face CPAP Mask with Nasal Pillows, and guess what--nope, I can't stand it.  I feel claustrophobic with it on, and yet, I love my resmed full face mask which covers just about everything. lol. So if anybody would like to buy a hybrid at a good price, I have one :).

Hang in there, try some different masks, and make those Dr's and DME people help you out. That was my mistake up front, I didn't get good counseling and follow up on things like I should have.

Good luck and let us know how it goes!

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Permalink Reply by Charlie Rodgers on February 17, 2011 at 4:08pm

I am having lots of problems with mask leaks. I have been on cpap for about 5 years, and every so often this happens. I go to sleep easily but awaken after3-4 hours with my mask leaking like crazy. I can reposition it, readjust it, whatever, and nothing helps. It seals well when I first put it on and adjust it, but it doesnt seem to hold as the pressure goes up. I have tried about 6 or 7 different masks but none fit completely well and all seem to have this tendency of leaking after several hours. I am tired ALL the time, I suspect its because i am never able to get to deep sleep and refresh myself. After all these years( I use my cpap religiously even for naps), I am seriously considering a permanent trach. This is always a 100% cure for OSA, and none of the difficulties of cpap use. It is a surgical procedure, but is reversible and cures the problem completely. It seems that a number of people are trying it when cpap is not totally effective or well tolerated. I hope those who dont like the idea of severe restructuring of the throat and palate would be presented with this option as well- remember: 100% cure.

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Permalink Reply by Virginia Smith on February 17, 2011 at 4:12pm

Glenn,

 

I got an auto-pap machine which I like much better then the C-Pap. The air pressure adjusts automatically so I don't get anymore air pressure then I need so don't have so much back pressure.  I know the machines are more expensive but for me it is worth the price.

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Permalink Reply by Todd Morgan, DMD on February 17, 2011 at 4:14pm

May I suggest an oral appliance as an alternative to CPAP? Try finding a dentist near you on the website "snoring isnt sxy.com"

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Permalink Reply by gm on February 17, 2011 at 5:38pm

My wife had a problem of feeling sufficated with her CPAP.....she actually had central sleep apnea. I would be curious if you actually have CSA or Mixed sleep apnea. CPAP's with a Cflex mode will not help you if you do have CSA.

 

Anyhow get it rechecked and stay up on it.

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