Difficulty wearing mask.

[Sleepless in Utah]

Hi,

First time poster. I stop breathing 88+ times an hour. I feel like I am dying. I got setup for a machine, but I have not been able to wear the thing. Yes I want relief, but clausterphobia and the other issue I am going to write about are issues.

The person that came to set the machine up made it to where it dials down (air pressure wise) when I breath out then it come back full force. I'd like to turn it off, so where it is full force when I breath in. It causes a little click/pop in my pallet that shuts off the air flow for a moment when I am relaxed. Effectively stoping the breathing. Sure I can manage the breathing awake... but that's not really the point for this machine.

I have tried about 3 masks, the one I have now I like. I have the ResMed S9, I just want to know the setting to change to not dialback/stall the pressure in the mask when breathing out.

The other item, It really feels like it's giving my sinuses a work out - that's more of a complaint than anything...

[jweeks]

Hi,

Welcome of the forum. It would help if you could go into the user control panel and pick the machine and mask that you are using.

It is easy to change how your machine works. The first question is if you want to do this yourself (which many people here do), or if you want to have your equipment supplier or respiratory tech do this. As far as you doing it yourself, there could be one of three cases:

1) you have a CPAP or APAP machine, and it has EPR or "flex" turned on. In that case, this is normally a user setting, change it back to zero.

2) if you have a BiPAP machine, and it was set this way for comfort, you can go in an change the two pressure levels to match, or set the pressure support to zero.

3) if you have a BiPAP machine, and you need it due to having central events, then you probably don't want to change this without your doctor getting involved. The idea is that some folks need a high pressure to breathe, but the pressure is so high that it tricks their brain into thinking that they don't have to breathe at all. The lower exhale pressure keeps the brain from being tricked.

Some people do better on a single pressure level, so your request is reasonable.

-john-

[truckee147]

I am on day 7 and days 1&2 I struggled mightily with wearing the mask. One thing that helped was reading the "change" article found in the announcement section.

When I finally got 4 hours of sleep on day 3 I could really feel the difference. My energy level zoomed. The next night I still hated the mask but know it is saving my life. I am up to 5 hours last night and increase every night.

I am claustrophobic and have worked through the panicky moments by realizing that I am in control of the mask and can remove it whenever I want. I OWN it, it does not own me. I also try to use mental imaging to put my mind elsewhere such as replaying a round of golf shot by shot or remembering a great life event and replaying that minute by minute.

I find the support here is super. There are hose veterans on here that have been through it all and can help us going forward. Read all you can using the various threads on the site and it will come to you. Best of luck

[Sleepless in Utah]

I found the setting. That made it more bearable to wear.

That said, MAN, I can't stand the thing. When I am driving down the road and having to slap myself to keep alert, I think; Ok, tonight I can beat it. Been about 2 weeks of having it. Wearing the thing is almost as bad as the affliction.

Writing this at 1am... I don't want to go to sleep, I'll wake up all paranoid from low O2. I used to take sleeping pills, but that only made it worse I think. Sleeping more soundly through the interrupted breathing I think only made the O2 levels dip further.

Any tricky ways to tricking yourself into dealing with the thing on your face?

[jweeks]

Wearing the thing is almost as bad as the affliction.

Hi,

What part is the difficult part? Is it the air pressure? Noise? Leaks? Discomfort with the part on your face? Issues with the headgear or hose? Self-conscious about how you look? Feelings of inadequacy or of being damaged?

If you can narrow it down a little, please post back, and perhaps folks here can come up with some solutions.

For many folks, it is a motivation factor. For example, a health crisis or a job crisis. In my case, I am disabled and not able to earn an income unless I can stay awake. For me, I have no other option than to do CPAP or get a trach. I don't want to get cut on, and I don't want to become homeless, so CPAP simply to work -- I have no other option. Perhaps you need to find that motivator. For example, think what life might be like if, in your example of trying to stay alert driving, if you blinked out for a moment and hit another car killing a child. Isn't that horrible thought reason enough to make CPAP work, or to consider quitting driving until you find a treatment that works?

Sorry to be so grim, but that is what life is like after being diagnosed with a deadly disease. Thankfully, there is a treatment, CPAP, that will somewhat difficult, is no where near as bad as what folks with diabetes or cystic fibrosis have to put up with. That sort of puts it in perspective.

-john-

[DavidCarolina]

Im really sorry youre struggling so much. But this is the right place for you. The level of knowledge of some of the people here is amazing.

Claustrophobia is a tricky topic because it seems to me that its part psychological and part finding the ideal system and pressure individually.

A few thoughts, i hope this helps, and feel free to PM me if i can help encourage you any way possible:

-warm air can cause the feeling of your problem. Get your room really cool, plenty of blankets, and see if it makes it easier to breathe.

-are you using a prescribed sleeping pill? Try reading something light before sleep and just before nodding off apply your mask. Im not a big fan of ramp. If the presssure is too much you can simply pull aside your mask for a moment and then re apply. It seems like a low starting ramp gives the feeling of trying to suck air when you first start off.

-the higher your prescribed pressure the easier to breathe. Of course, the harder to keep the mask on too.

-I wonder if a mild med (anti anxiety, not anti depressant) might help. The usual stuff is zoloft and the like but some people do better on other things
such as buspar (desipremine). Its a soothing feeling that also raises your serotonin.

-a celing fan or light fan can really help. The breeze across your body and face makes a nice difference.

-make sure your filters are always clean. They can clog.

Good luck and God Bless. Keep working at it, Believe me, you'll make it but you gotta be tough and have help. This isnt something to go alone.