New Poster, 1 month on CPAP

[RJazz117]

Hi folks...well, as you can see from the subject, I'm new to posting here, but not completely new to CPAP.

I've had my gear for over a month, and have already switched from the nose mask to the air pillow style. I can't really say that I like either piece of gear...they're both awful for different reasons...but at least I'm still using CPAP. I detest strapping this thing to my face/head every night...and don't imagine that feeling will ever go away...CPAP is the LAST thing I ever wanted.

Over the last month, I can only report having slept well for one night...about 2 weeks ago. I woke feeling much better than I have in years, but the following night (and ever since) I seem to have gotten the same lack of sleep I usually get. I'm still using CPAP, waiting for some consistent "better" feeling the next day, but at this point I'm not very optimistic.

Also, over the last two weeks, I seem to have developed a habit of taking my headgear off in the middle of the night...without waking. Is there some way to combat this?

[DreamDiver]

Hi folks...well, as you can see from the subject, I'm new to posting here, but not completely new to CPAP.

I've had my gear for over a month, and have already switched from the nose mask to the air pillow style. I can't really say that I like either piece of gear...they're both awful for different reasons...but at least I'm still using CPAP. I detest strapping this thing to my face/head every night...and don't imagine that feeling will ever go away...CPAP is the LAST thing I ever wanted.

Over the last month, I can only report having slept well for one night...about 2 weeks ago. I woke feeling much better than I have in years, but the following night (and ever since) I seem to have gotten the same lack of sleep I usually get. I'm still using CPAP, waiting for some consistent "better" feeling the next day, but at this point I'm not very optimistic.

Also, over the last two weeks, I seem to have developed a habit of taking my headgear off in the middle of the night...without waking. Is there some way to combat this?

Welcome RJazz117!

It's a little different for each of us. If you haven't already, check out the yellow lightbulb at the top of the forum to learn more. As to your mask, someone who is familiar with it should come along soon with advice for your particular mask. Sometimes it takes a few months to get things right. You'll figure it out.

Meanwhile, if you have the software and haven't used it yet, consider installing it and giving us some data. If we know things like your AHI and leak rate, other forum members can give better suggestions.

If you have any questions about terminology in a particular post, look first at the top of that post in the blue section labeled "CPAPopedia Keywords". Most of the acronyms and terms of interest will be there.

[carbonman]

I detest strapping this thing to my face/head every night...and don't imagine that feeling will ever go away...CPAP is the LAST thing I ever wanted.

It is your choice.
There are the alternatives to embracing the mask.

Cardiovascular system failure
High Blood Pressure
Stoke
Hypertension
Diabetes
Chronic Fatigue
....just to name a few possibilites.

These are the alternatives I consider each night as I
contemplate the mask.

Hope this helps.

[Wulfman]

I detest strapping this thing to my face/head every night...and don't imagine that feeling will ever go away...CPAP is the LAST thing I ever wanted.

It is your choice.
There are the alternatives to embracing the mask.

Cardiovascular system failure
High Blood Pressure
Stoke
Hypertension
Diabetes
Chronic Fatigue
....just to name a few possibilites.

These are the alternatives I consider each night as I
contemplate the mask.

Hope this helps.

RJazz117......here's two more......"Depression" and "EARLY DEATH".

Are you married and do you have children? What would you say to your children if they had a life/health-threatening condition and to improve it would only require them to wear something while they slept?


Den

[Dennisla]

Hi folks...well, as you can see from the subject, I'm new to posting here, but not completely new to CPAP.

I've had my gear for over a month, and have already switched from the nose mask to the air pillow style. I can't really say that I like either piece of gear...they're both awful for different reasons...but at least I'm still using CPAP. I detest strapping this thing to my face/head every night...and don't imagine that feeling will ever go away...CPAP is the LAST thing I ever wanted.

Over the last month, I can only report having slept well for one night...about 2 weeks ago. I woke feeling much better than I have in years, but the following night (and ever since) I seem to have gotten the same lack of sleep I usually get. I'm still using CPAP, waiting for some consistent "better" feeling the next day, but at this point I'm not very optimistic.

Also, over the last two weeks, I seem to have developed a habit of taking my headgear off in the middle of the night...without waking. Is there some way to combat this?

Hi RJazz,

I am new to this also. 2 and a half months now.
The first month was horrible as you described. The during the second month I started to get used to things.
First I got used to having pressure (air blowing into my nose). Now believe it or not I grew to like it.
Second I got used to having the straps on my head. That is a mind over matter thing. But choosing the right mask can help
with that. Because some masks do not require to be strapped down so tight. I went threw four different masks before finding
the right one for me. Now that I have that down there are other things I'm focusing on like the number of apneas per hour
and more details of my treatment. I guess what I am say is don't give up. You will overcome one obstacle at a time. I felt exactly the same as you did when I started. As it turns out this is just one more fact of life we have to learn to live with.
You will find a lot of support on this forum, all you have to do is ask.
Good Luck!
-Dennis

[RJazz117]

Dreamdiver...thanks for the comments. I have read most of the "lightbulb" stuff already...not much of it was new to me, though. I had researched the heck out of Apnea and CPAP prior to being diagnosed. I might consider getting the software, but don't have a card reader (and can't afford one) so I don't see how it would help. I can get some basic data out of my machine though, and I'll do that later and post what I get.

Carbonman...Yeah, I'm aware of all those risks/symptoms. Most of what I suffer from is chronic fatigue, but I'm probably getting more susceptible to cardiovascular system failure the older I get. I used to wake sweating profusely, breathing very heavily, virtually every morning...at least THAT has changed.

Wulfman...Yes, I'm married and I do have children, and would tell them the same thing I tell myself: Just put the d*^$#d thing on and go to sleep.

Dennisla...I'm okay with the air up the nose thing so far. My major complaint would be the sore nose/upper lip upon waking. When I used the mask instead of the "air pillows" (what a lame name!) it was the bridge of my nose/upper lip that ached. In effect, all I've managed to do is change the location of the discomfort a bit. I've been awake for over an hour now, and my nose still hurts, and I'm still exhausted. Also, there is the "dork factor" in play here. These contraptions look ridiculous...a definite detriment to having a sex life.

My wife is trying to be as supportive as possible, pointing out as many of the positives as she perceives as often as possible, but she does get a little chuckle out of my appearance every night...sometimes telling me that I look like a scuba diver...which is not a "plus" in my book. She has told me that I've stopped snoring since using the CPAP machine...which is the main symptom that started me getting checked out by various doctors over the last 4 years.

I tried every stop snoring product out there, I've had UPPP surgery and a snoreplasty...nothing stopped me snoring for longer than a few months, but CPAP did immediately. Now, if only I could get some decent sleep, maybe the exhaustion would go away.

[RJazz117]

Follow up:

Okay, it has now been 2 years and about 8 months, give or take, of me using my CPAP machine...yup, I use it every night.

Here's where I am:

I still wake every day feeling as if I never slept. <---I look/speak/act practically drunk in the morning

The mask is uncomfortable and comes off at night...not every night, but more frequently than not. <---This thing slides around on my head as if it is greased

The mask leaks water despite adjusting the humidity to the lowest possible setting. <---I'm thinking of growing gills

The mask leaks air periodically, every time I move my head at all when sleeping. <---Maybe if I move my head enough, I can catch some of the escaping air?

The tubing still gets in the way...there seems to be no good way to secure it. <---It's like wrestling a hissing plastic snake all night long

The mask causes congestion. <---Nice little thumb in the eye there, huh?

I am now snoring/gurgling again and the wife isn't sleeping anymore (hasn't for days) I will be moving out of our bedroom again today.

Net result: ONE good night of sleep in 2.5+ years.

To my knowledge there remain only two "procedures" I could have performed to alleviate this issue, but neither of them are even remotely appealing. One is a tracheotomy and the other involves resuspending my tongue. Is there really nothing else?

[cflame1]

What have you tried in order to fix your problems?

[HoseCrusher]

The big question is...

Did you stop by just to vent?

Or

Are you interested in trying a few different things that may help?

[kteague]

I just hate to hear that you've struggled over 2 years with issues that should be addressable, but it is good to hear that you have persevered and not just quit. Just my opinion - it's not another procedure your need, but a process of methodically addressing your issues.

Mask fit: It this the same mask you've had all along or have you tried others? Someone will come along here with a link to tips and tricks for your type of mask. If it cannot be made to work for you, it will be time to switch. Have you tried to stabilize the mask with extra straps? I've been reading on here that Padacheek has a strap to help prevent leaks.

Hose management: What have you tried to manage your hose? A hose that tugs and pulls will cause leaks and discomfort. Have you tried suspending the hose above your bed?

Water in mask: Is your humidifier off and just being used as a passover? Is you machine sitting lower than your bed? Have you put a cover on the hose to help with condensation?

Snoring again: Is this while your mask is off or having large leaks? Or maybe your pressure is too low.

I know this sounds like a lot to figure out, but fixing one or two things may cascade and resolve other issues. If you have to suffer through this is one thing, but why suffer unless every option to improve the treatment has been tried. Best wishes.

[TonyLfromVA]

I have been using Cpap for several years however recently I am being told that the snoring has returned. On occassion I catch myself making noise. Do you think the pressure needs to be bumped up some? I feel that I have a drip of congestion going on at the same time. Any help would be appreciated.

[Pugsy]

I have been using Cpap for several years however recently I am being told that the snoring has returned. On occassion I catch myself making noise. Do you think the pressure needs to be bumped up some? I feel that I have a drip of congestion going on at the same time. Any help would be appreciated.

What mask are you using. What machine are you using? Is it possible that the snores are heard because of mouth breathing?
Is your machine data capable to check leak rate? Before I would change pressures I would try to figure out if other factors were involved.

If you will formally register at the forum and in your profile fill out the equipment page, it will help us help you better.

[RJazz117]

cflame1: I had thought I had tried just about everything, and was checking in to see if I was mistaken.

HoseCrusher: I stopped by partly to vent my frustration, and partly to find out if there was something else I could try. Though I don't post much, I do read the posts here periodically, but am probably not "current" on new techniques and/or technologies in the field.

kteague:

Mask: I have tried several and yes...I am using the original, since it seems to suck the least.

Hose: I have tried just about everything, and do currently suspend it over my side of the bed by the headboard. It is still like fighting a python hanging out of a tree each night. There is either too much slack from the point it is attached, and I find myself rolling my head around on a ball of hose, or it has too little slack and it yanks my mask around causing leaks...and me to wake.

Water: I have adjusted the humidifier every way possible, short of turning it off or disconnecting it entirely, even including using it as a passover humidifier. I either wake with my sinuses totally dry and sore, or get wet all night...there doesn't seem to be a good setting.

Snoring Again: I somehow manage to snore with my mask on, but it's not exactly snoring as we all know it. More like gurgling/choking/gasping/some snoring noises...my wife describes it as if I'm drowning and being strangled at the same time. I also just stop breathing for brief periods and when I restart, I gasp very loudly as if I had just been under water for nearly too long. I had my pressure adjusted up last summer, and it seemed to help until a couple weeks ago, when I started sleeping very noisily again...if you can call it sleep, that is.

It is a lot to figure out...no doubt...and I don't really hold out much hope that I will every figure it all out and get good sleep.

[Drowsy Dancer]

I also just stop breathing for brief periods and when I restart, I gasp very loudly as if I had just been under water for nearly too long. I had my pressure adjusted up last summer, and it seemed to help until a couple weeks ago, when I started sleeping very noisily again...if you can call it sleep, that is.

Dude. That stopping breathing and then gasping? Sounds like, um, sleep apnea.* Go back to your doc ASAP. Without the appropriate pressure (whether it be straight CPAP, BiPap, AutoPAP or ASV), the most comfortable hose and humidifier in the world aren't going to help you.

Good luck!

DD

*not meant to be unsympathetic at all, BTW.

[HoseCrusher]

OK, here are some suggestions.

Pick up or borrow a pulse oximeter and see how your oxygen levels are doing while you sleep.

As far as your mask goes, try it looser. This is a tough one because everyone's face is a little different.

Pick up another hose and connect the two hoses together. Take your hose off of the headboard and find an old tie or robe belt. The extra length will allow you some freedom. The idea is to use the tie to fasten the hose to your body, probably at your waist. When you set this up lie down on the bed with the hose going up your belly. Tilt your head back a little and turn your head off to the side. Now you can tie the hose to your waist. If you have an extra tie, you can put another one around your chest. Both of these want to be snug, but not tight.

Caution: If you sleep walk or have to get up in the middle of the night to pee, be sure to untie your straps or you will pull the machine in tow behind you.

With minimal tweaking, you should end up with a hose that follows your every turn in bead, and doesn't pull on your mask. This will allow for a looser mask fit that shouldn't leak.

This routing of the hose may also keep water from collecting inside of it and eliminate that problem.

Finally, listen to Drowsy Dancer. On the surface it sounds like your pressure is not enough to keep your airway open.