Please sugest a mask

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Julie
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Re: Please sugest a mask

Post by Julie » Tue Jan 20, 2015 10:04 pm

You asked why we help if we're doing ok... that makes me sad, as I wonder if you've only known people who take care of themselves, and not others who ask for help? I'm sure part of the answer is not particularly admirable - I think we all like to see our words in print , like to think we have the answers, but we also really like to think we can help people and hope they pass it on themselves in some way... don't you? It's not easy to hear others say they're having a hard time and not want to help if we think we can... it's normal!

I also suggest you go to the light bulb at the top of the pages here and start reading - lots and lots of info and great links about Cpap... and please don't waste your money on homeopathy... it absolutely is not something OSA can be helped by.

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palerider
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Re: Please sugest a mask

Post by palerider » Tue Jan 20, 2015 10:45 pm

Johnny Bravo wrote: Thank you again. So, guys. Just out of curiosity. For those of you who are doing well already sleeping with your cpaps: why do you go in here and help people out like me ?
's called "giving back", or maybe 'pay it forward', or just being a decent human being.

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Re: Please sugest a mask

Post by Johnny Bravo » Mon Jan 26, 2015 1:32 am

Hi:

I don't know if anyone sees this forum anymore. So don't know how but i'm starting to sleep with my Mojo full face mask now and i've noticed i'm a bit less bad now. I still have to sleep a lot of hours to be able to get up and i'm not feeling refreshed, but at least i'm using my cpap (together with my oral device). I've found out that's the only way for me to use it cause the device makes room for the air to be able to go in. Otherwise i'll get leaks or won't tolerate it and i'll feel choked. I still have this strong mark and discomfort in the root of my nose, but i think that's the least of my problems. After a lot of prayer I hope this is the start to a journey to recovery. I've never believed in this therapy cause all the struggles i've had with it and with sleep apnea alone. Now i'm planning to have my oral device adjusted, probably to go to the US to get a better one that works with cpap, and to probably get surgery later on this year. I just hope i have a bit of strenght to do all this from using my cpap. So thank you to all who posted here and helped. I love you all for that and i admire you for fighting for your sleep and getting it.

John.

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chunkyfrog
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Re: Please sugest a mask

Post by chunkyfrog » Mon Jan 26, 2015 1:21 pm

Of all the adult relatives who died before their children were grown up, I suspect most were due to untreated OSA.
My baby brother was six, some of my cousins were even younger. I need a tissue right now.
Too many orphans or half-orphans, kids I was close to, and loved.
How can I not try to help?

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Re: Please sugest a mask

Post by Guest » Mon Jan 26, 2015 4:08 pm

Hi, forgive me if I missed something in the thread about this, but has anyone recommended the Tap Pap nasal pillows mask? It fits on your teeth but it's just nasal pillows, not a dental device. It was the third mask I tried and it is great, nothing crawling all over your face. I have GERD too and low carb diet does seem to help. (Also for energy, more even throughout the day.) Good luck!

Guest

Re: Please sugest a mask

Post by Guest » Mon Jan 26, 2015 4:34 pm

Guest wrote:Hi, forgive me if I missed something in the thread about this, but has anyone recommended the Tap Pap nasal pillows mask? It fits on your teeth but it's just nasal pillows, not a dental device. It was the third mask I tried and it is great, nothing crawling all over your face. I have GERD too and low carb diet does seem to help. (Also for energy, more even throughout the day.) Good luck!
Hmm, not sure why it is posting me as "Guest" all of a sudden. Should be coming from surf_rower. Anyway... even if you think you can't be a nose-only breather, it may be worth a try.

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palerider
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Re: Please sugest a mask

Post by palerider » Mon Jan 26, 2015 5:42 pm

Guest wrote:Hmm, not sure why it is posting me as "Guest" all of a sudden. Should be coming from surf_rower. Anyway... even if you think you can't be a nose-only breather, it may be worth a try.
because you're not logged in.

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chunkyfrog
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Re: Please sugest a mask

Post by chunkyfrog » Mon Jan 26, 2015 10:36 pm

Tap pap is an acquired taste, the bite plate is a different feel, and may take a few tries to get it just right.
You need a good base of your own natural teeth. Keep it really clean or it will get icky.
Headgear haters might love it.

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archangle
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Re: Please sugest a mask

Post by archangle » Tue Jan 27, 2015 5:49 am

Johnny, please sign up for an ID and fill in your equipment on your profile. There's a link in my signature line below.

A few thoughts. Pardon me if they've been covered.

Have you tried chin straps? I didn't see them mentioned.

Have you tried the Oracle oral mask? I found it uncomfortable, but it fits differently than other masks and doesn't have the same problems with fitting as other masks. It has its own problems, but is sometimes it's the only mask that works. There are also total face masks, same caveats. There's some info on Oracle masks in my signature line.

A "Hybrid" mask might also work.

Many of the masks need to inflate into your face to fit right. Someone described it as being like a hovercraft. Sometimes, loose fits better than tight.

Try to fit your mask at full pressure. Sometimes, if you have an auto machine, you fit it when you put it on and when the pressure ramps up, you end up not fitting. Also, when you put the mask on, don't tense up. I found that I tend to tense up and flex my face to stop leaks. Then when I fall asleep and relax, I leak. I found I needed to consciously relax my face and try to cause leaks and then adjust my mask with a relaxed face.

If the leaks are happening at full pressure, you might be able to make it work by reducing the max pressure. This may make your therapy less effective in theory, but it might not be as bad as having the leaks.

Do you have SleepyHead or ResScan to monitor your results?

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Re: Please sugest a mask

Post by surf_rower » Tue Jan 27, 2015 7:28 am

chunkyfrog wrote:Tap pap is an acquired taste, the bite plate is a different feel, and may take a few tries to get it just right.
You need a good base of your own natural teeth. Keep it really clean or it will get icky.
Headgear haters might love it.
Snorkelers won't mind it. Nor people who do sports with mouth guards.
You can clean it with a toothbrush, but yeah, you want to replace the guard part fairly frequently. Actually, my dentists gives it a good cleaning when I take it in there. Not sure what they use.
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Julie
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Re: Please sugest a mask

Post by Julie » Tue Jan 27, 2015 8:31 am

Johnny - I'd very much like to help if possible, and my first thought is that the Mojo is quite an old mask, haven't heard of anyone using it in years, though it may still work for some, though don't know if it's replaceable any more. My second thought is that I wish you'd do a search on this forum about surgery for OSA - it's definitely not well thought of at all... people have it (the UPPP is the least popular one) and within less than a year are back where they started, needing Cpap again, but having an even worse time of things because now their anatomy's been changed so using a machine/mask is even more difficult. Please consider very carefully what you plan - ENT's love operating, but their patients may not always love the results! We can certainly help you get fitted better mask-wise and help setting up your machine to work at its best for you.

Johnny Bravo

Re: Please sugest a mask

Post by Johnny Bravo » Wed Feb 18, 2015 10:51 pm

Julie, and everyone who posted:

I'm sorry I took so long to post again, having started this post. I didn't think people would continue to reply.

I don't even know what to write or where to begin. I always find hard to post here, cause i feel like a freak, so far beyond help.

I am not using my cpap again, had to travel to the capital, Bogota, to get my dental device adjusted, and to see my surgeon. I haven't come back to my home town, where i left my cpap. I don't even bother to carry it with me anymore, since i don't use it. I don't even bother to use it anymore.

It's not like i nevere tried. If i list the troubles i had with it i'll never end. If i list all the issues i have with sleep i won't either. i feel i need psychiatric help. I have all these other chronic health issues that have seemed to originate from sleep apnea, but i'm not sure. And i don't know if those are the reasons why cpap doesn't work when i try it.

Last time i tried it, about a month ago, i spent awake all night in bed with my mask on, after taking the strong sleep aid i take every night, and couldn't fall alseep.

Here it goes again (and this is hard for me to write, shameful): i have chronic acid reflux, chronic bloating (i have had shortness of breath from it), i feel i can't digest anything, chronic fatigue and weakness, chronic insomnia, depression and anxiety to name a few. Right now i'm facing a flare up of gastritis and i feel hungry all the time. I've gained weight and my cholesterol is very high. I just started taking medication for it and a diet. My sleep is extremelly light. I can't fall asleep even with anything on. And it's been years like that.

i feel i don't have either the strenght or motivation to do anything anymore. It's not like i wanna die. I just don't have the strenght to get up from bed or do anything from my extreme exhaustion from my severe lack of deep sleep. I feel so far beyond help or rock bottom. I feel i'm going crazy and dying.

The oral device i use makes my mouth be open, so my soft palate is not so closed. And i just had it adjusted so my lower jaw is forward. It's sad to say, it helps, but i feel the same. I insist on saying that if i don't use it i'd ve dead or crazy. I've woken up choked, heart racing and with very light or no sleep at all if i don't use it or take my sleep aid.

i'm 40, living with my parents, who have to take care of me now, and off course i'm jobless. I have been forever. I feel lost and hopeless. I gave up hope a long time ago. I know it's easy to judge. I'm still somewhat young (thogh i feel like i'm 90), and people who don't know anything about sleep apnea here just think i'm depressed and lazy.

My father is a loud snorer and he has sleep apnea too, but he lives in denial. I don't have support from him or anyone. And i simply don't have the strenght to do anyghing on my own. i need help and i don't know how to ask for it. Everyone seems to be so busy with their own lives and problems. I don't know what to do.

About the surgery. It's not UPPP, it's MMA (maxilo mandibular advancement). I still haven't taken the decision to go through it. I know sleep apnea surgery is controversial. Even my surgeon warns me that there aren't garanties. I found her after a long search and research. I've turned down several ENTs that wanted to cut my soft tissues. I have the paper work in my hands to go through it now, it's all up to me. I just feel that i'm too weak and crazy now to get it. Specially if it doesn't work. I feel i'd take the risk and get it and bear the post if if i wasn't this weak.

I use a RESMED VPAP ADAPT SV the old first version without a card, cause i was diagnosed in the usa with complex sleep apnea. i don't even know if i'm using the right machine. Or pressure range. I don't remember what it is. It's set to the last titration i got in Stanford (EEP-8, Min PS-4, Max PS-17, Rate auto). And i have a Mojo mask cause it's the only one i can barely stand now. All masks i try i have to buy online and wait for them to get here.

I'm sorry for this sad post. I don't know why i wrote it. Maybe cause perhaps there's a bit of hope still in me, and i'm completely alone in this. Please don't judge.

John.

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Re: Please sugest a mask

Post by purple » Thu Feb 19, 2015 12:04 am

Yes, sounds like you need a good titration study. When I see someone who has a wide pressure range, I know they are not likely to be getting good sleep. Only if the pressure they need is on the very low end of the scale.

Back to the mask question. If your face is irregular, (mine is larger on one side than the other) then perhaps a FitLife Total Face mask might work. Could add a mask liner. Someone has a list of things which can be done to make this mask more effective. I get an XL mask and slip the end of the mask down below my chin (I can only get away with that because I have a small nose) and I use Large straps as the XL straps are too long. There is a new version of head straps, which I have never gotten, have an extra strap that goes below the chin, which sounds like it would be worlds better in keeping the mask in the right place.

I should say that the mask has a very high intentional leak rate, to clear the CO2 out from under the mask. The air flows out around the circular nozzle. Then some air comes out where the flap on the ninety degree turn of the hose connector is. That is correct, let all that air come out.

Also I use a hose management system. I use the Hose Buddy from our sponsor, and I think just tying the hose up on the headboard would work pretty well. Helps to reduce the pull of the mask hose on the mask, plus it can make it nearly impossible to pull the machine off in the floor.

There are some home sleep monitoring equipment which might be helpful in determining what is happening, which can be correlated to pressures, events later.. This should make it easier to figure out what you might do in terms of settings that might make the thing better. I have never used one. Maybe someone else on the forum can jump in here and give some advice.

I looked into MMA. What I heard is, does not help at all for many individuals. Some it helps a little, reduces the pressure they need. Some go for awhile without xPAP, and then they need to go back onto xPAP. It is fairly painful. Only let a surgeon who has done a lot of these surgeries, and then has done them successfully, (successfully does not necessarily mean that they get off xPAP, but it does not create more problems). I do not need to spend a bunch of money, go through a lot of pain, and with a very low odds I can get off the machine. I will stick with the pains I know.

Removing soft tissue. My first sleep doc told me that the ENT surgeons who used to do those things. now send those patients to him. Soft tissue removal has a very low chance of success, and I personally suspect it is really painful.

Best Wishes.

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Re: Please sugest a mask

Post by 49er » Thu Feb 19, 2015 3:21 am

Hi Johnny,

I can't remember you mentioning this but have you made sure your nasal breathing is optimized? If not and you have tried all conservative methods, I would look into a septoplasty/turbinate reduction first before going the route of MMA. That alone could make a big difference with your pap therapy tolerance issues.

If you were go through with the surgery and it didn't work, then in my opinion, the MMA would be worth considering if you have feel you have given pap therapy every opportunity to work. According Casey Li, whom would be my number on choice for surgeons if I had my druthers (I don't ), he feels that surgery has the best single chance of considerably alleviating symptoms.

However, he also suggests a complete exam of the airway to pinpoint where the problematic areas are to make sure that the surgery being chosen will address the problems.

http://www.sleepapneasurgery.com/solutions_adults.html

To summarize, verify that you have completely optimized your therapy and given it every opportunity to work. If you are considering surgery, start with a septoplasty/turbinate reduction first. That alone might improve your pap therapy experience and not necessitate further surgery. If it doesn't, then study this site very carefully before proceeding any further:

http://www.sleepapneasurgery.com/solutions_adults.html