C-pap doesn't work for me.....

irishdame · Post by **irishdame** » Mon Sep 14, 2009 11:31 am

About a year ago I was told I stopped breathing 53 times in an hour, 10 sec. at a time. I got my machine Resperonics and the Gel face mask. I was told it would change my whole life!!!!! I was so excited. I couldn't wait to feel like a human again! They said it would help my heart, BP, insomnia, loose weight and just have a better life! Wow I would do anything to feel good again at 54. Well I am one of the few people that it doesn't help. My doctor said that to me. It does I guess help me to breath better WHEN I sleep. And I have used it every night because of that. Now I am having a different problem and haven't been able to wear it for the last week. I have had problems with chronic dry eyes, and now my throat gets very dry at night with it on. I tape my mouth cause I'm a mouth breather and I use the humidifier, altho I get water in my mask. I wake up and need to cough and can just barely get it off before I do and of course untape the mouth....I almost panic...lol Any advice? Thanks, and I am so very happy for those of you that it really helps....Only wish I was one......

drj130 · Post by **drj130** » Mon Sep 14, 2009 11:37 am

One of the things that you could try, is a full face mask. They were designed, from my understanding, for people who mouth breath. There are several different types out there. I'm trying the Hybrid right now. It is something that I'm still trying to get use to. I'm not a mouth breather, but it is a really comfortable mask.

David

irishdame · Post by **irishdame** » Mon Sep 14, 2009 11:40 am

I tried a full face mask, I couldn't deal with it. Thanks so much for advice tho.....

Muse-Inc · Post by **Muse-Inc** » Mon Sep 14, 2009 11:47 am

The RespCare Hybrid is not like most FFM...it only covers the mouth and has nose pillows. I have pretty bad clautrophobia, so there's no way I'd wear a nose or FFM mask. I loved my first mask, the Respironics OptiLIfe, then started losing air thru my lips...no more pillow mask . The Hybrid is NOT like other FFM. Do a search, lots of us here like it.

CPAP has improved my BP, mostly healed my brain, cured my insomnia, given me back dreams and memories of them, improved my mood, and I've lost 53#s so far. It's an adventure that's for sure; for me, a long, slow journey.

GumbyCT · Post by **GumbyCT** » Mon Sep 14, 2009 11:52 am

It could be you simply are not at the right pressure for you to receive effective therapy. Just how long have you been on what?

ozij · Post by **ozij** » Mon Sep 14, 2009 12:01 pm

Hi there, irishdame, and welcome to the forum.
Three issues that can help make things better:
Data (efficacy data)
When you doctor told you CPAP may not work for you -- did he do that after unloading the data the machines gathers? Did he discuss you results and settings with you?

Because, you see, you have a machine that can record how many breathing disruptions you have at night -- it will record them onto a smartcard -- but in order to read that data, the card has to be read by software.

The data gathered by the machine is called AHI for short - but there's acutally much more to it than mere apnea and hypopnea numbers. Would you consider pronouncements about BP medication not working of some people, from a doctor who never monitored the patients BP?

The pressure settings
The machine -- if it is indeed the RemStar Auto can be given a great variety of pressures to range through. Do you happen to know what your minimum pressure setting is, and what the maximum is? Some doctors and equipment providers only know the machine's sales pitch -- that it "self adjusts" and will give you the machine set with a min. of 4 and a max of 20. Few people do well when the minimum is set at 4 -- the machine takes far to long to get to a pressure they need -- and then it drops back to the minimum without having learned it shouldn't stoop so low....

Avoiding rainout
Rainout is annoying, it disrupts sleep, it also keeps an automatic machine from reading your breathing properly and responding accordingly.
Steps to slove rainout:
A hose cover
A cover for the masks hose
A Heated Hose.

I need all three solutions, I got my heated hose at http://www.sleepzone.com.uk, and have been using it for 4 years. Therapy would not have worked for me without it -- at all.

So you see, there are many things you can do to improve your therapy.

O.

drubin007 · Post by **drubin007** » Mon Sep 14, 2009 12:11 pm

don't overlook the obvious when it comes to rainout... can the humidifier level be set slightly lower to prevent rainout?

On my F&P apap, if I set the humidity to 3 I swim. at 2.5 I am just fine...

also, how about a chin strap? I used to be a mouth breather and dreaded a full face mask. Tried one for the second sleep study and said no way... can't do it.
Then used a nasal mask and that worked for me. The pressure forced me to keep the mouth mostly closed. Have since moved into nasal pillows and a chin strap and seem to be getting good therapy.

Every so often I get creative and increase the humidity. I have to drop it back down the next day though.

MoneyGal · Post by **MoneyGal** » Mon Sep 14, 2009 12:56 pm

Echoing what the others have said! I don't know that it is that CPAP "doesn't work" for you -- it sounds instead like there are some barriers to effective treatment which you will need to overcome in order to get the benefits that have been described to you. This is the case for *virtually all* CPAP-ers. It is extremely rare to get it working well right "out of the gate," so to speak.

In addition, you will likely get better and more comprehensive support here, from other users, than from your DME or sleep doctor. Let us support you in getting this right!

irishdame · Post by **irishdame** » Mon Sep 14, 2009 1:06 pm

Thank you all for your advice. Yes I do have the card that is read when I go to the doctor. Said I only stopped breathing 2 times a night instead of 53. So thats why I continue to wear it. Its the dry throat that is stopping me from wearing. I am 9on 7-11 air flow. They tested me a few times on that and the card said that was enough. I do like the looks of the mask that only covers the mouth and has nose pillows. Now if my ins. will pay for another style of mask. They just bought the machine and mask out right. The water getting into my mask don't bother me much, I can handle that, its having my mouth taped shut, (advice I got on Cpap)
and wake up needing to cough so bad, It makes me panic a little. I have coughed with my mouth taped and that scared me a little....lololol I though I blew out my ears....lolol Looks like this other mask might do the trick...I will let u know. Again thanks for all of your advice!

drj130 · Post by **drj130** » Mon Sep 14, 2009 1:19 pm

I have this mask, I brought it from our host out of pocket. I did a little searching on the net and found it for a cheaper price. If you'd like, I'll look for the site again and see what their price is, and send you the needed info. Our host will price match, I've done it with the Hybrid mask and with a humidifier I just brought from them today.

I know it isn't much, but it might help with the cost a little. One of the other things I can think of, is if this mask doesn't work for me, and I don't think that it will, I can send it to you for you to try, and keep if it works for you.

David

carbonman · Post by **carbonman** » Mon Sep 14, 2009 1:55 pm

irishdame wrote:I tried a full face mask, I couldn't deal with it.

I couldn't deal w/gluing my mouth shut, clamped into a chin strap....
...then I couldn't deal w/a FFM either....

....then I realized that I really couldn't deal w/watching
my life continue to swirl around and slowly disappear
down the white, procelain convenience.

A lot of choices in life...
a lot of trade offs....

jnk · Post by **jnk** » Mon Sep 14, 2009 2:47 pm

In harmony with carbonman's statements, I have found that turning "failure" into "success" often involves using joyful creativity in (1) defining the specifics of a problem and then (2) making a list of possible solutions to try over time.

I have found this board very valuable in helping me with that approach to PAP therapy.

Muse-Inc · Post by **Muse-Inc** » Mon Sep 14, 2009 6:32 pm

drj130 wrote:...if this mask doesn't work for me, and I don't think that it will, I can send it to you for you to try, and keep if it works for you...

David, what's the problem? Can those of us who like this mask help?

concerned mom · Post by **concerned mom** » Tue Sep 15, 2009 8:51 am

Definitely try the Hybrid mask with the nasal pillows .My daughter wears glasses and keeps them on while watching tv to relax before falling asleep, and this mask allows her to do t his comfortably. It doesn't make her feel as confined or "claustrophobic" as the other full face masks to. She has needed this therapy for two years now and we have tried just about every full face mask out there. The Liberty full face mask with nasal pillows was okay, but we found the Hybrid pillows stay in much, much better than the Liberty ones. In addition, there's a little piece that is attached that goes on the chin and helps with mouth breathers, without making you feel like you are taping your mouth shut. The only problems we have encountered have to do with abrasions to my daughter's nose due to the rubbing of that bar. I have tried some of the suggestions posted here and have been dealing with Pad a Cheek company (wonderful people). We are still trying various solutions to try to help her. Rainout is also an issue. We have her humidifier on the lowest heat setting and we cover the tubing with a cotton cloth each night, which was a recommendation from her respiratory therapist, but it doesn't always help. Even with these issues, this is still the best mask we have tried for her. Best of luck to you.

LinkC · Post by **LinkC** » Tue Sep 15, 2009 9:52 am

Does CPAP work for Multiple Personality Disorder??

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