I can't use my cpap!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
melbykins

I can't use my cpap!

Post by melbykins » Mon May 02, 2005 9:53 am

I have been diagnosed with sleep apnea which is most severe in my dream stage. I was fitted for a cpap back in February and I have one of the newer ones, with the nasal pillows. I cannot use it, and I don't know what to do. I have always had a ton of trouble getting to sleep and when I put the machine on and try to use it, I just lay there, waiting to fall asleep, which is incredibly frustrating. I can hear the air whooshing in and out and it just drives me nuts. I also sleep on my stomach regularly and can't do that with my cpap. What do I do? I'm tired all the time and need help, but this isn't working for me. Can anyone help me? I'm desperate.

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rested gal
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Post by rested gal » Mon May 02, 2005 10:45 am

melbykins, another person who posts on this board ("2listless" is her nickname) likes to sleep on her stomach and has had a difficult time finding a mask that allows her to do that comfortably. She's now using the new Comfort Curve mask and likes it. I don't know if it would be right for you, but you might want to read the topics about "Comfort Curve" to see 2listless's comments about it.

The Aura is the mask that I've found to be comfortable in any sleeping position - side, back, stomach. The Breeze with nasal pillows is my very close "2nd favorite" now. However, the Aura became my favorite mask because of some drastic tweaks I've done to it...you can see pictures of the changes I made to my Aura by clicking these links to topics on two message boards:

Posted on cpaptalk by rested gal Fri Apr 29, 2005 subject: Aura Lite - solution to hair breaking or thinning

Posted on TAS by LCM (Lorraine) Apr 27 2005 subject: My Hair! It's Being Destroyed!

If you want to give the Aura a try, I'd strongly suggest buying it from cpapsuperstore.com since that particular store has a policy of full refund for the purchase price on that particular mask. If you buy the Aura from that store and don't like it after using the mask at home, you can send it back and get your money back.

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Post by Night Owl » Mon May 02, 2005 11:15 am

Can you specify for the people who read your post, what your pressure is at, do you use the ramp feature, what machine you have, and which nasal pillows ? There's lots of people with experience out there to help. A few general thoughts:

Sounds, generally, like even though you may have received decent equipment from your provider, it is your preexisting trouble falling asleep that is frustrating your efforts to use cpap. There are dental appliances that your doctor may determine would be better for you if the noise from the nasal pillow and sleeping position is all that is in the way of a good night's sleep.

I also have trouble falling asleep, and hate that antsy time of waiting and waiting for sleep to come. It took me two months of attitude adjustment to be able to use my new cpap equipment. I also use nasal pillows and after awhile, found I could sleep on my stomach, with the my pillow positioned just at the edge of my cheek, head on the side, and nasal pillows free of the edge of the pillow.

I use the Swift nasal pillows, and the whooshing sound bothered me also, and others. Silly-sounding, but I try to think of it as the ocean, as peaceful, as rhythmic and comforting. After using it now a few months, amazing to me, I don't hear it at all and love that mask. Getting used to something new is part of it. Many people have to try a few masks to get the one that suits them.

You can try using your mask and machine, before bed...just to get used to it in a neutral setting. I found the ramp feature bothered me and turned it off, but others find it easier to ramp up to a higher pressure.

Once my apnea was treated, and sleep was refreshing, my trouble falling asleep was greatly reduced. It took good equipment, trying a few masks if necessary, and time to adjust, plus a few trips back to the provider and doctor. Some posters here have had the same problems as you are having, and most agree to keep trying because it is worth it to restore you.

A little humor about it helps, and there's lots of that available on this forum also.

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Liam1965
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Post by Liam1965 » Mon May 02, 2005 2:13 pm

Boy, do I know where you're coming from.

Not to discourage you, but I gave up, for a time (due as much to heavy stress in my life as to the problems sleeping).

But I know exactly what you mean, lying awake listening to the machine whooshing and yourself breathing and never being able to shut your brain down enough to get to sleep.

I'm about to start another trial on the machine (as soon as my new Auto arrives, thanks to the person who sold it to me), and I hope this one goes better than the last one.

But if you find a solution, please let me know.

Liam who, like Clinton, feels your pain, but unlike Clinton, won't feel anything else of yours.

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meister
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Try some ear plugs for the noise!!

Post by meister » Mon May 02, 2005 2:25 pm

They can really make a big difference. I hated laying there listening to
my mask whistle Dixie all night. Next, you may need to use some "help"
for a couple of weeks. Tylenol PM, or maybe Melatonin, or some Ambien
should get you asleep. Now staying asleep, that is a different matter. My
first three nights on PAP, I just laid there counting my breaths with my
eyes closed, until the alarm clock went off. Also, meds like Trazadone,
Xanax, and Valium can be used. Of course, all meds can be problematic,
so work with a good Doctor. Also, try a white noise machine, along with
a black Sleep Mask. But start with the ear plugs!!

Guest

Post by Guest » Mon May 02, 2005 2:30 pm

I also had trouble the first few nights which was quickly solved with the help of AMbien - took it for the first 3 nights and then switched to Benadryl for the next 2. I have never needed anything since that.

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Post by Liam1965 » Mon May 02, 2005 2:47 pm

Anonymous wrote:I also had trouble the first few nights which was quickly solved with the help of AMbien - took it for the first 3 nights and then switched to Benadryl for the next 2. I have never needed anything since that.
This is interesting... I hear a lot of people talk about various sleep meds, and thus far not ONE of them has worked for me. Since I seem to have the same sort of sleep disturbance as the original poster, I wonder if they also would have trouble with them.

The ONLY medications I've ever taken that make me fall asleep are Benadryl and Elavil. Benadryl isn't reliable, though, and the sleep isn't the greatest (although poor sleep sure beats NO sleep). The Elavil only worked when I was on depression-therapy doses of it, and then I was a zombie all the time, sleeping 12 hours a night, and pretty much spending any time I wasn't otherwise engaged in work or eating lying in bed asleep.

Ambien, trazodone, various benzodiazepenes, none of them have helped. I think it's because of my slightly obsessive personality, once I start obsessing on the fact that I can't get to sleep, it's incredibly difficult to get me past that hump.

That's been my problem with the CPAP. I focus so much on the hose and the breathing and the noise and wondering whether this is the night I'll be able to sleep with it on that the whole night goes by (or as much of it as I allow before getting frustrated and hurling the mask across the room) without sleep.

Liam, who knows he's not being encouraging, but provides this info in case some other obsessive personality has found a solution.

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Difficulty sleeping

Post by 2listless » Mon May 02, 2005 5:02 pm

I am repeating myself here but it evidently is a larger problem than "Sleep Doctors" care to acknowledge. CPAP corrects sleep disordered breathing.
If, you are unlucky like so many of us apparently are, you also suffer from insomnia, then you are having an entirely different problem that all the cpap machines, hoses, masks etc will NEVER correct. I will generalize here, and probably irritate a few people, but most sleep doctors decide, in their infinite wisdom, that sleep apnea is causing you to be awake - so slap that CPAP machine on and you are miraculously cured. They do not LISTEN to you when you tell them that you are doing laundry at 3AM or reading your 3rd novel at 4AM or sitting at your computer writing responses on CPAP message boards at 5AM. What truly amazes me, and you can include me in this, how many of us get any sleep medication from the "Sleep Doctor?" No way, you get it from your General Practitioner after your 400000 complaint about lack of sleep. Most sleep meds are meant for short term use only - and Ambien was not worth a hill of beans. You must be careful about using any medication to help you sleep. Some medications will cause you to go into this lovely deep sleep and then you relax and all the muscles relax and before you know it - you are having more apneas and do not understand why! It is truly a vicious cycle and I wish I had a great solution for you. And yes, once you focus on the mask and machine, you turn into an adult with ADD and fixate on it. I could tell you to "just relax" and charge you $100 for that useless piece of advice - but we all know that the mind does not turn off easily for many of us. The only useful piece of advice I can give you is how to sleep on your stomach. I have successfully used the Comfort Curve on my stomach. But my best solution was to take the Activa out to the garage, light a propane torch and get rid of the forehead piece. I then covered the flat edge with some calico stuffed with cotton and added a bow - that way you are protected from the sharp edge. I place the mask between my 2 giant down pillows - do not hook it to your head - and then I just burrow my nose right down in it. One thing about the Activa - that baby will suction cup to your face. All you have to be careful of is being sure the exhaust vents are free from blockage. I have also purchased a cheapo foam pillow from Wally World and cut an opening the shape of the mask and made a hole to feed the tubing through and burrowed the same way. I am certain that you could do much the same thing with other masks - it just takes a sharp exacto knife and a little patience. I have been struggling with this for a year and if it had not been for the supportive people on this message board - I would have taken my CPAP machine, hoses, masks, heated humidifiers, distilled water and filters and taken them back to the "Sleep Doctor" and inserted them where the "sun don't shine"!! Good Luck!! If anyone finds the cure for insomnia, please let me know!!!!!!
Life is not a dress rehearsal

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Post by Liam1965 » Mon May 02, 2005 5:36 pm

For what it's worth, I have BOTH. My sleep study clearly indicated apneic events when I DID fall asleep. So I have two problems, I just never knew I had two problems.

I always assumed the light sleep and tendency to rouse during the night was related to the insomnia, and that it was all one problem.

But I think the doctor is probably right, because even on the nights when I DO fall into a deep sleep, and DO sleep all night, I still (as often as not) wake up not feeling at all rested...

Liam, two, two, two ailments in one! Now with a drop of retsyn!

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Post by Night Owl » Mon May 02, 2005 9:49 pm

2listless -- that is so my experience also -- and the doctor keeps saying the same thing, prescribing meds, that only make apnea worse. I can run full tilt, even get a lot accomplished some nights when I just give up trying to sleep. I hate that creepy-crawly feeling laying in bed on and on waiting for sleep. It's been a problem for most of my adult life.

Getting comfortable ( as in hacking apart your Activa ) with the mask was a big help. I use the Swift now with only one of the straps and that very loose and can sleep on my stomach.

What changed my life, was a serious illness that the sleep deprivation and apnea was accelerating and causing some part of. Ha, very quickly I made my bed my new best friend. Made it into a luxurious respite. How my brain was finally able to shut down in order to sleep, I don't know. Self-preservation kicked in, I guess.

My guess, is my having trouble falling asleep was a vicious cycle and a habit in my case. Faced with livin' or dyin', it resolved.

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Post by lvehko » Thu Jul 13, 2006 6:01 pm

Just in case the original poster isn't on 'information overload...'

Insomnia is one of the main symptoms of clinical depression, and clinical depression and sleep apnea are highly correlated. So, if you have apnea AND insomnia, I'd suggest you be evaluated for depression.

Contrary to common belief, clinical depression is not only 'feeling depressed,' it is also a physical illness with physical symptoms. Medication often helps with those physical symptoms, though finding the right one can be a real pain. However, if you are depressed, and you can successfully treat your depression, often the insomnia will improve also.

Min

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Additional Comments: Started CPAP June 14, 2006, pressure set at 8.0

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Liam1965
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Post by Liam1965 » Thu Jul 13, 2006 6:06 pm

minerva wrote:Contrary to common belief, clinical depression is not only 'feeling depressed,' it is also a physical illness with physical symptoms.
Boy, don't I know it.

Liam, echoing out of the past, and then quickly receeding into the mists of time again.


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neversleeps
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Post by neversleeps » Thu Jul 13, 2006 6:30 pm

WAIT!!!!!!!!!!

COME BACK!!!!!!!!!!!!!!

A spammer must have resurrected this thread from May of '05, but it brought Liam out of the mists of time so it was worth it!!!

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Post by Liam1965 » Thu Jul 13, 2006 6:40 pm

neversleeps wrote:WAIT!!!!!!!!!!

COME BACK!!!!!!!!!!!!!!
Yes?

Liam, in full boomarang mode.

(For what it's worth, I really don't hang around here much anymore, but every so often I still get the "reply notifications", and this one struck close enough to home that I thought I'd reply).


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Post by neversleeps » Thu Jul 13, 2006 6:45 pm

How are you? How's the baby? What's new? Do you ever drag your machine out and give it a whirl, or is it a paperweight?