What am I doing wrong?

[cherylann]

I made a couple of other posts under the name dg not realizing I had to register.

So here is my story. I began to have breathing difficulties about a year ago. Doctors couldn't find anything wrong. I had been having trouble sleeping for about a year before that, but it started about the time I was diagnosed with epilepsy and so I thought it was related to that. It wasn't until this past May when I stopped breathing during recovery after gallbladder surgery that I was diagnoised with sleep apnea.

I was told my apnea was very severe - I don't have the actual results or understand how to put that in numbers. I tried several different masks but simply could not adjust to them. Finally, after seeing and ENT doctor, I was told that I have narrow nasal passages which makes it too difficult to breathe through my nose and I needed a full face mask. I guess I've always been a mouth breather and just didn't know it. So I switched to a full face mask.

Things are just not getting better..in fact they are getting worse. I just can't tolerate having my face bound up in plastic. It's hot, it''s sweaty, and it hurts. Every time I turn over or shift position, the mask shifts and I start feeling air blowing into my eyes. The hose gets tangled around my neck. I pull the machine off the table. The most I've been able to wear it is four hours. Most of the time I don't even remember taking it off. When I realize I have taken it off, I intend to put it back on, but I never find the strength.

Prior to being diagnosed, the breathing trouble I was having was during the day. if I was not breathing at night, I did not know it. Now, though, I go to bed unable to breath and I wake up unable to breathe and with a splitting headache. My chest feels like it is caving in. I have a few hours mid-morning to late afternoon when I feel OK.

I

[Emilia]

I moved most of my last reply to your post on the other thread before you registered:

2. Please take a minute to go up to the User Control Panel (under search, top left) and then to your Profile and then Edit Equipment. Choose your gear from the pull down menus and the choose to show those in TEXT, not pictures. This will put your equipment at the bottom of every post your write automatically, like mine below. Those with the same equipment can help you better than having to constantly ask you what you use!

Once you are fully registered and we know what equipment you are using, we can attempt to help you resolve these issues. It might have been better to start your own threaded discussion... but once you are fully registered and logged in properly, you can do that.

You've landed in the right place.....we can help you, but you have to be willing to learn and become knowledgable and empowered to handle this therapy. Once you have, you will begin to feel better, think better, and that new relationship will be able to blossom. There have been many discussions about handling new relationships and taking the step toward intimacy with cpap as the third party in the room. Do a search for those....

Once we know what your equipment is....those with the same machine/mask/etc. can help you tweak things to get you on the road to recovery.

Hang in there......

[cherylann]

I guess there is a limit on how long a post can be so here is rest of my comments.

I check my oxygen level several times a day and it is always fine. But, my doctor had me do an overnight oximetry test and while sleeping it was dropping into the 60s. Now I have oxygen bled in, but since I still can't tolerate the mask for very long, I don't think it is helping.

I know this is long and rambling, but I am just so frustrated that I don't know what to do. The bottom line is that I feel worse than I did before I started using the CPAP machine. I guess because I am getting so much less sleep.

I just don't know what to do. This is affecting every minute of my day and every aspect of my life. I have had every heart/lung test possible in the last year and the only thing doctors can find wrong is the apnea. I just never know from one day to next whether or not I will live through the night.

[Pugsy]

Welcome to the forum.
Please add your equipment to your profile. It will help the members help you better.
Here's how. wiki/index.php/Registering_Equipment_in_User_Profile

What pressure do you use?
Do you use ramp? If so at what pressure for how long?
If your machine has any form of exhale relief do you use it and if so at what setting.
You cannot hope to feel better using the mask for 4 hours and then taking it off and not putting it back on.
Bad habit to start.
There are ways and things to help make masks more comfortable but we need to know some facts to be able to offer anything other than very general ideas.
There are hose management systems (for purchase and homemade) that can help with the hose pulling the mask loose.

[ameriken]

Things are just not getting better..in fact they are getting worse. I just can't tolerate having my face bound up in plastic. It's hot, it''s sweaty, and it hurts. Every time I turn over or shift position, the mask shifts and I start feeling air blowing into my eyes. The hose gets tangled around my neck. I pull the machine off the table. The most I've been able to wear it is four hours. Most of the time I don't even remember taking it off. When I realize I have taken it off, I intend to put it back on, but I never find the strength.

As Emilia said, you're in the right place.

You say you just can't tolerate having your face bound up in plastic. That's not the first time that's been said and most folks do have a difficult time acclimating to the mask. There is no easy answer except that you have to learn to tolerate it. Some things you can do to help are to wear the mask during the day when you're watching tv, cleaning, reading, or whatever. Just wear the mask without the machine. Take a nap with the mask and machine, even if for just 20 minutes. At night, before going to bed, put the mask and pressure on about 20 to 30 minutes before you actually go to sleep. Read a book or watch tv or play a video game, or anything to keep yourself occupied. The point is to understand that the mask and the machine is your best friend, your comrade, your lover. Do everything you can do to make yourself comfortable with it because you are most likely going to remain married to it for the rest of your life.

Try to think of it as a good thing, because it is and find ways to acclimate yourself to wearing it so when you go to sleep, it's not so unbearable. And when you wake up after 4 hours with it? Force yourself to put it back on.

I'm sure others will be along with some better suggestions. Good luck!

[cherylann]

Thanks, guys. To answer some of your questions:

Pressure is 8-15 - supposed to auto adjust as needed. I seriously wonder if they set it right. The challenge is that I cannot tell . The people at the store said the pressure reading shows on the display, but the display isn't lighted so I can't see it. Maybe I'm not understanding how the read that?

Ramp is 5 mintues. I don't know what pressure relief means.

As far as wearing the mask while doing other things around the house, that sounds like a good idea, but not possible because I wear glasses and even with the new mask I have - the Quatro FX - I can't get them to set properly.

I know I have to use the mask more than the 2-4 hours I have been able to manage it (I only sleep six hours a night anyway so it's not really that much more). But, even the hours I am wearing it, I'm not really fully asleep. I have not had a solid night's sleep since this all started in May.

[ozij]

Hi Cheryl, and welcome to the forum.

What is the name of your machine?

Meahwhile, here are some tips that are true, regardless of your equipment:

No mask should hurt.
Full face maks are harder to seal that either nasal or pillows masks - which means getting the right one and training it can take time.
Even with a fitting mask, hose management / hose routing and mask pads and mask liners can be crucial. Mask straps and mask liners save you from much of the plasticy feel.
Many of us have found that sleep becomes much better - and the seal much easier to keep whe you get the hose to dangle from above.
Then there's the pillow you use for your head - that too can make or break the mask's seal. There are a number of dedicated CPAP pillows, some people use water pillows, Target's Shapeable pillow has helped others, a cervical pillow .... nothing to do but try and err, until you find the right one.

When I had to switch from a nasal pillows mask to full face one I had to try 3 before the 4th one worked. The one that works for me - and seems to work for many women - is the Innomed Hybrid.
I actually had to change both my hose hanging method and my pillow when I switched to the Hybrid.

rested gal has collected links to many topics, and here's her ALL LINKS by rested gal topic. Note epecially this one:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

I know what you mean by needing glasses. Same here. Can you try to listen to relaxing music with your eyes closed and the mask on your face?

Good luck.

[archangle]

Welcome.

Cheer up. There's usually a way to make it work.

If your SPO2 (blood O2) is really getting down to 60, you're going to die if you don't fix this. (How's that for being cheerful?)

Unfortunately, oxygen may not help much with apnea patients. If you're not breathing, even 100% oxygen doesn't help.

First of all, you've got to stop taking off the mask. Tell yourself "I'm going to DIE if I don't wear my mask." If you have to take off your mask, do so, but only AFTER you get up from the bed. Do not lie down, even for a minute, without the mask. Go into another room and sit down for a minute or two if necessary. Do NOT lie back down until you're ready to put the mask back on.

Do you really have a ResMed S8 AutoSet Vantage? Does it say "AutoSet Vantage" next to the display? Is there any particular reason you got that machine?

Wear the mask and do CPAP while reading or watching TV. Or just listening to music.

Experiment with the straps on your mask. Tighter is not necessarily better. The mask should not hurt. How specifically does it hurt? Skin irritation, squeezing you, etc.

There are oral and hybrid masks that don't cover as much of your face. Look here https://www.cpap.com/cpap-masks.php for some pictures of various types.

Try everything. Maybe sleeping in a recliner will work for you by keeping you from turning over.

Keep trying. Lots of us here are CPAP basket cases who finally figured out how to make it work.

[cherylann]

I found the book on my machine. It is a ResMed autoset & Elite. I had started out with a different one that my brother gave me, but when doctor said I needed to have auto adjusting of the pressure, this is the one the medical equipment place said I had to have.

I'm not sure what y'all mean when you say "hanging the hose". I have a six foot hose so it will go all the way across the bed when I turn over, but sometimes it pulls loose. And with the new mask, it comes loose there too. And the oxygen tube comes loose. So I spend a good part of my time in bed just hooking everything back up.

After being diagnosed with apnea, I did sleep in my recliner for the 4 weeks it took the medical equipment place to be able to see me. I was so scared I was going to die, I was afraid of going to bed. if this doesn't start working soon, I may just go back to that and forget about using this machine.

I sleep on four pillows (always have) so I am not lying completely flat in bed anyway.

It's strange, but the night of my sleep study, they woke me up at 1:00 and hooked me up to a machine. Then they woke me up at 5:00 and I felt better than I had in over a year. I was so excited - I couldn't wait to get my own machine. But, that is the last good night's sleep I have had and that was in May.

[archangle]

I found the book on my machine. It is a ResMed autoset & Elite. I had started out with a different one that my brother gave me, but when doctor said I needed to have auto adjusting of the pressure, this is the one the medical equipment place said I had to have.

After being diagnosed with apnea, I did sleep in my recliner for the 4 weeks it took the medical equipment place to be able to see me. I was so scared I was going to die, I was afraid of going to bed. if this doesn't start working soon, I may just go back to that and forget about using this machine.

It's strange, but the night of my sleep study, they woke me up at 1:00 and hooked me up to a machine. Then they woke me up at 5:00 and I felt better than I had in over a year. I was so excited - I couldn't wait to get my own machine. But, that is the last good night's sleep I have had and that was in May.

Does your machine look like this?



Look next to the power button. Does it say AutoSet?

If so, you have a ResMed S9 AutoSet, one of the best machines out there. Many patients get shafted by their DME and get a machine that doesn't do as much. Rejoice. That machine can tell you a LOT about what's happening to you in your sleep.

Try the recliner WITH the CPAP machine. See if it helps you adjust better to the machine. I'm not saying the recliner is better than the bed. I'm just suggesting that it's enough different that maybe you can get used to sleeping with CPAP there. Plus it keeps you from rolling over and strangling yourself with the hose.

In particular, don't assume you'll breathe better in the recliner. You might or you might not.

Keep trying. You may be able to get that 5 AM feeling again. Keep discussing your progress here.

Unfortunately, you can't just hand your apnea treatment over to your doctor and DME and expect to get the right answers, you have to work at it yourself. It's like hitting yourself over the head with a hammer. It feels so good when you finally get to stop.

How bad is your nose breathing? If you close your mouth and breathe exclusively through your nose, is it difficult without the CPAP? How about with the CPAP. Maybe you can still use a nasal mask.

[cherylann]

Yes, that is it. But, there is another part, too. The humidifier. What is a DME?

If I sleep in the recliner, why would I need the CPAP? I'll be sitting up.

I just got up after being in bed for 1 1/2 hours. Never once did I fall asleep. The oxygen hose came off three times. The mask hose came off once. I was constantly tugging at the mask because air was blowing in my eyes. I think I will go back to the mask with the headgear - at least it didn't leak so much and this one really hurts my jaw.

My nose breathing is almost non-existent. I tried every mask they had for the first two months. I used a chin strap and even taped my mouth shut, but within ten minutes I was suffocating. I finally went to an ENT to see if there was something blocking my nasal passages and he said they were just too narrow for me to breath through.

[kteague]

Hi. Sounds like you're off to a rough start. I can relate to that. Bit by bit on here I got tips that helped me work through the issues.

Just wondering about your nasal issues. Do you mouth breathe when you're awake? If you can get adequate air through your nose when awake, it seems you should be able to at night. If you are always a mouth breather due to maybe a deviated septum, maybe it would be a worthwhile discussion if repairing it would make you able to use a less obtrusive mask.

Hope you make progress so as not to lose hope. You're in a good place to get help sorting things out.

P.S. As I was posting this I see you've posted again. Looks like a hose management system is a priority for you. As far as sleeping in a recliner, I have fewer apneas when in a recliner, but if that recliner allows my back to sink in and my head is pushed forward, I'll still be miserable. A straight backed recliner that keeps my back and neck in alignment gives a tolerable though imperfect sleep for me. Just can't assume a recliner an adequate answer. Hope the tips on working with your mask prove helpful.

[cherylann]

thanks, everyone for your comments. As a result of joining this forum yesterday, I did better last night. By that I mean I did wear the mask every minute I was in bed which was a little over 6 hours. I got up once after fighting the new mask too much and changed back to the old one (full face with headgear). I think that one is going to work better for me after all. But, even though I wore it all night, I never fully went to sleep. I was just kind of in that state of being close to sleep and always conscious of having something pressed on my face and not being able to move much. And I woke up exhausted with a splitting headache and gasping for breath as usual.

To answer your question about mouth breathing, kteague - once all this started and I realized I couldn't breathe through my nose, I stared paying more attention to that. And yes, I realize now that my mouth is almost always open even when awake. I've consciously tried to keep it closed, but after a couple of minutes I start suffocating. Doctor did several tests - no blockage, no deviated septum - just narrow nasal passages.

[jcurt172]

Chreylann, sorry to hear you're having such a rough time but rest assured, you are not alone. I'm just four weeks into this myself and although progress is slow, there is progress. The posts you're reading from others in this forum are spot on and good advice. I have a Quatro FX as well and using glasses with that mask is a juggling match at best. This mask is designed to rest a bit down on the bridge of your nose so be sure it's not riding too high and that may help with the spectacles. Hose management sounds like a good plan as well. If nothing else, you may want to consider a 8ft hose so you're not as apt to pull your machine off the night stand. Finally, my personal experience has been that, for me at least, this is one of those therapies that gets worse before it gets better. When I first got my machine I hoped that my troubles were over that very night, but, alas, that was not to be. While some people do take to the therapy very quickly, I gather that the majority of us do not. The best advice I have is not a quick or easy fix but simply this: don't give up...ever; don't panic, it will get better; remember you're not alone, there's a huge community of "hose heads" ready and willing to help you through this. Oh...and did I mention "don't give up...ever?"

[robysue]

cherylann,

I am sorry to hear how difficult the early going with CPAP has been for you. I really do understand since I spent the first four months of xPAP therapy feeling much, much worse than I had before starting CPAP. I developed a really bad case of insomnia during the early going; but by the end of month three I had been switched to a BiPAP machine and I was able and willing to start doing some hard cognitive behavior therapy for the insomnia. By around the tenth month of therapy I finally started to feel a bit better than I had before starting this crazy therapy. I'm now 11 1/2 months into therapy and finally I'm noticing a real positive difference with sleeping with the mask almost every day now.

There is a real learning curve for some of us. And it sounds as though you're one who's finding it more difficult than many. But stick with it---because it will eventually become easier. Maybe sooner (if you're lucky) or maybe later (if you're not), but it WILL happen---if you are stubborn enough to stick with the therapy and willing to work hard at making it work.

One suggestion concerning the hose problems that has not been made is to consider a longer hose together with a hose managemnt system. The combination may make you feel less tethered.

For the plasticy feeling (which many of us hate), you might find mask liners useful.

And for some general ideas on how to handle the fact that you're having trouble getting to sleep with the mask on, read the "Taming the CPAP Induced Insomnia Monster" link in my signature.