I can't bring myself to use the CPAP

Thanks. I'll probably try this again tonight, but I'll have to sleep in the other room. There's no sense in both of us being up all night again.
Any tips on how to roll over without having to come almost into a sitting position to do so? Also, do you use your regular pillow? How do you know what mask would be best? How do you get other ones to try? They're too expensive to just start ordering them over the net.
What happened the last couple of nights is that when I first put it on, I feel as though I have to breathe in so hard at first. It's like I'm trying to breathe through a straw instead of that huge tube. Is that normal?
As you can probably tell, I got no instructions when I left with this machine other than to call the sleep clinic (after 11:00 p.m.) if I had any questions. It was just put it on, press this button, now out the door with you!
I did find a website with instructions on how to get into the set up mode on the machine. But now, what should I change?

If I were in your position, I'd be tempted to bug the heck out of the "medical professionals". They (more than likely) charged your insurance big bucks for your equipment (and service) and THAT'S what they're getting all that extra money for. Make them EARN it!

I don't recall what you've said your pressure is set to, but if it's too low and that's causing the "breathing through a straw" effect, then your pressure may be too low.

Den

I agree with echo about cpap curing insomnia. Once you GET THERE, full compliance and catch up on sleep. Now I fall asleep in minutes. Used to be, it wasn't unusual to lay there for hours. This was b4 cpap. I used to have a lot of problems revolving around sleep.

I also used to have high blood pressure and was told I was at risk for fibromyalgia. I was misdiagnosed with depression for 10 years before I finally got the right diagnosis. Now, almost all of my seemingly random and unrelated health issues have evaporated. BTW, I've only been on the hose since June. I'm a true recent convert to the church of CPAP. No disprespect to my true God, of course.

Jen

Sleepless, you're going to make it! Right now it seems overwhelming, but you'll get there, little by little. The most important thing is your attitude, and you're getting there with that, too, by keeping on with it even though it is a big adjustment for you. Forget the separate beedrooms! That's counterproductive and will make you resent the CPAP even more.

You've been very clear about what you think about it, but you haven't said anything about your husband. Is he supportive or not? It's nice to want to not disturb him, but he's got to get used to this thing, too. My wife has NO problems with mine. You have GOT to recognize the benefits for using it and long term penalties for NOT using it and accept it as part of your life.

Over the first few nights you will slowly start getting used to it, and then you can start working on each little piece of the puzzle that bothers you. It's usually the mask, but if your pressure is wrong that'll make it worse. Keep talking to your Dr, DME, and/or sleep lab, and tell them what's not working for you. It will slowly come together and you'll be comfortable with it.

We can help with specific questions once you get to that point mentally.

Hang in there and keep us posted with your progress!

Sam

SleeplessinCLE,

The discussion of heart attacks and strokes and other dismal effects of SA are interesting and can be a strong motivation of people already at risk for these threats. I find the best motivation is the effects you see day to day. You do not mention the other symptoms you have, how tired you are, or how often you sleep during the day. My motivation was being half asleep ALL the time! This leads to getting poor rest during the day (half asleep at the desk) and not being as tired at night when you should be sleeping. It feeds on itself and your description of trying to go to sleep sounds like part of the pattern. Focus on your daytime state to support getting better sleep at night. No naps when you get home from work, some form of exercise but not too close to bedtime, set a bedtime and train yourself to go to sleep at that time by sticking to the time each night. The amount of energy I have during the day now is worth the way I look in the mask. And no, I haven't looked in the mirror and I won't start now. I did see my brother in law wearing his fighter pilot outfit and it put me off getting a sleep study for another 9 months. Bad mistake. I wish I had those months back to enjoy awake like I am now. And like you, the two sleep study nights were the worst. After the second one I swore I would not go back if they did not get enough data. Those are lost nights but yours are behind you now. Work through the adjustment to the machine and get the benefit of being fully awake for the many days ahead. By the way, you probably look hot even with the mask compared to most of us on this forum. Good luck and keep in touch, these folks can help with this stage and any other problems you might have.

Got into the set up mode on the machine last night and turned down the pressure to 5.0. I still cannot exhale sufficiently to relax. After 2 hours of trying, I took the mask off. I had a horrible headache!! I took 2 ibuprofen, put on a Breathe Right strip, and slept like a baby!
I called the clinic yesterday and someone is supposed to call me back today. We'll see...
Last night John tried to use his CD player and headphones to block out my noise with the machine, but it didn't work. I kept him awake until 1 a.m. when I took the thing off.
I don't believe that my machine has C-flex. Perhaps with that I could use it.
I just can't for the life of me figure out why someone has not, cannot come up with a more comfortable way to deliver air. Seems rather odd to me.
I'm using a mask called a Flex-fit (or something like that). Any suggestions as to another mask I should ask for? I think I'd be scared to death with one that covered my face anymore than this one does.

Truly, I have not been plagued by daytime sleepiness. I've never fallen asleep at my desk or anything like that. I would take a nap 3 out of 7 days. I did have low energy, though. After my first sleep study I started to look at things. I got a cushy new mattress top and bought some Breathe Right strips. I started sleeping 6 -7 hours a night. I started feeling really great. Energy to burn. Plus, I've been seeing a chiropractor because my C1 and C5 were out of whack. With that relief, I think I began to sleep better, too.
Then, I went for my second study and came home with this machine. It's been downhill ever since. I was totally depressed at the thought of having to wear this mask and use this machine. Now, I'm trying it and it's just been a nightmare.
I have not been examined by any sleep doctor. My rhumatologist sent me because I have fibromyalgia and he said not sleeping well was bad for that. I think I'll make an appointment with an ENT or at least my GP to discuss all of this. Anyway, that's my tale of woe from last night. So just call me Still Sleepless in CLE.....

SleeplessinCLE wrote:Got into the set up mode on the machine last night and turned down the pressure to 5.0. I still cannot exhale sufficiently to relax. After 2 hours of trying, I took the mask off. I had a horrible headache!! I took 2 ibuprofen, put on a Breathe Right strip, and slept like a baby!
I called the clinic yesterday and someone is supposed to call me back today. We'll see...
Last night John tried to use his CD player and headphones to block out my noise with the machine, but it didn't work. I kept him awake until 1 a.m. when I took the thing off.
I don't believe that my machine has C-flex. Perhaps with that I could use it.
I just can't for the life of me figure out why someone has not, cannot come up with a more comfortable way to deliver air. Seems rather odd to me.
I'm using a mask called a Flex-fit (or something like that). Any suggestions as to another mask I should ask for? I think I'd be scared to death with one that covered my face anymore than this one does.

Truly, I have not been plagued by daytime sleepiness. I've never fallen asleep at my desk or anything like that. I would take a nap 3 out of 7 days. I did have low energy, though. After my first sleep study I started to look at things. I got a cushy new mattress top and bought some Breathe Right strips. I started sleeping 6 -7 hours a night. I started feeling really great. Energy to burn. Plus, I've been seeing a chiropractor because my C1 and C5 were out of whack. With that relief, I think I began to sleep better, too.
Then, I went for my second study and came home with this machine. It's been downhill ever since. I was totally depressed at the thought of having to wear this mask and use this machine. Now, I'm trying it and it's just been a nightmare.
I have not been examined by any sleep doctor. My rhumatologist sent me because I have fibromyalgia and he said not sleeping well was bad for that. I think I'll make an appointment with an ENT or at least my GP to discuss all of this. Anyway, that's my tale of woe from last night. So just call me Still Sleepless in CLE.....

Sleepless,


They gave you a DS100, the lowest of the M-series line. It offers only straight CPAP -- one constant pressure all the time, once you've ramped up to the set pressure. That is, if ramp was set. That is a tough pressure mode for most people to tolerate well. Honestly, that is the original CPAP therapy and not the best therapy for the vast majority of OSA sufferers.

Stay on them and complain. Demand that they provide you an A-FLEX unit.

The DS510 M-series A-FLEX can operate in multiple modes. The device can deliver the following therapies:

CPAP – Delivers Continuous Positive Airway Pressure; CPAP maintains a constant level of pressure throughout the breathing cycle.
CPAP with C-Flex – Delivers CPAP therapy with pressure relief upon exhalation to improve patient comfort based on patient needs.
Auto-CPAP – Delivers CPAP therapy while automatically adjusting the pressure level to meet the patient’s needs.
Auto-CPAP with C-Flex – Auto-CPAP therapy with pressure relief upon exhalation to improve patient comfort based on patient needs.
Auto-CPAP with A-Flex -- A-Flex is a comfort feature built on top of the REMstar Auto algorithm. If breathing events occur, the auto algorithm raises the A-Flex pressure profile to eliminate those events, while simultaneously making sure that pressure never rises to a level thats unnecessarily, and uncomfortably, high.

What that means is... it is a most versatile flow generator. As your needs change the mode of the machine can be changed to meet them. For most people this type of versatile machine is the best option.

Good luck, and I am deeply pleased that you are really trying to adapt to the therapy. Good wishes and prayers are with you.

Nodzy

Yes, you need a better machine. Make sure your DME knows that you are aware you could buy a top of the line machine online and bill your insurance yourself for lwaaaaaaaaay ess than the cost they are charging for the stripped down machine. Check out the prices at cpap.com.

Make sure they let you try diff masks on too. I don't know which flexifit you have--does it cover your face and mouth? Did they say you are opening your mouth when you sleep?

I was on the verge of fibromyalgia when I was diagnosed with apnea. I was just a few "pressure points" short of diagnosis. My joint pain is now almost gone, I would say I'm definitely in the normal range now for joint pain. Getting good sleep is CRITICAL with this disorder.

The key is to reverse all the damage before it gets permanent--this is also true for high blood pressure, diabetes and heart issues. Having low blood oxygen when you sleep does a lot of damage to your body. A LOT.

I'm sure my husbands sleep was disrupted a bit when I first started but he never complained. It takes time to adjust. Try a white noise machine--you know those little machines that can sound like rain, or crickets or just plain white noise.

You never mentioned how severe your apnea is. CPAP is the gold standard and you need to keep with it, but there are other things that can be done too. Some people have had success with an oral appliance from an oral surgeon who specializes in sleep. It is called the TAP device. It can sometimes be effective for mild to moderate apnea.

You say you slept like a baby. I would have said the same thing 6 months ago. Just because you don't consciously wake up doesn't mean that your body isn't being roused and flooded with stress hormones just to breath many times an hour. If you keep waking up all the time you never get into delta wave sleep, the most restorative sleep where all the tiny little damage that you incur during the day is repaired by your body--it is well known that the chemicals that build up in your joints and cause the pain of fibromyalgia are removed by the body during delta wave sleep.

You sound a bit panicky in your posts. I would venture a guess that the poor sleep you are getting is leaving your body on edge--you are being flooded with panic chemicals all night long, coupled with poor sleep, no restorative sleep and you are going to feel like a train wreck.

I would also try to get longer hours of sleep if you can. The amounts you mention are not adequate for most adults. We need 7 hours minimum and 8 is better. When I was recouping lost sleep after getting on cpap I slept 9-10 hours a night for a few weeks. Then one day I just didn't need it anymore and 8 has been enough.

I know it is hard. I remember feeling very isolated and alone during that time when I started on xpap. My first machine wasn't satisfactory either and I (like many others here) had to fight a little for one that worked better. The one I would work for if I were you would be Respironics M-series Auto with A-flex. Call your sleep clinic/sleep doc and tell them you can't exhale and tell them you want a scrip for this machine. If they won't help, call your rheumatologist or GP, get an appt and EXPLAIN all of this. You just need a scrip from an md, it doesn't matter much, from what I've heard which one. Of course sleep doc would be best.

It sounds like you have more energy than most of us did upon diagnosis--congrats--you have more energy to fight for optimum treatment than most of us!

jen

I agree with Nodzy about the machine. They also gave you an inexpensive mask. My DME let me try at least 4 different masks before I chose one. I had tried a different one for my sleep study, so that made 5. I chose the Swift. Here's a photo of it.

https://www.cpap.com/viewImage.php?PNum ... illows.jpg

It is lighter weight than most masks. It may or may not work for you, but I found it very comfortable from the start. I still use it, though I use a different one more. To me, it looks like a snorkle. You can see very well with it, too. This may cut down on the closed in feeling you have. If you just recently got the mask, they should take it back if it's not working for you. Then they should let you try on several masks, different types, to see what works for you. You may end up buying masks eventually, but the first one should be a reasonable match for you. That's their job.

I think some people react more strongly to the way the mask looks than others. This is not always vanity or sexism, but can be something else. One guy I know just doesn't like the way it looks because it's kind of scary looking to him. I think it reminds him of surgery and life threatening situations or something like that. Or maybe movies about aliens.

It sounds like you husband might not be very supportive, and I think that makes it harder. I agree that the alternatives are things like having a stroke or a heart attack, and those things are far less convenient and also more unattractive or scary looking. If he understands the risks, he may see the convenience differently.

The other issue you raise is your feeling you can't breathe. If you lowered your pressure to 5, this may cause more breathing problems. Most people at those low pressures feel somewhat suffocated. If there is a way for you to try the machine during the day for naps, this will also help you get used to it. Or just try it while watching tv to get used to it for a couple of days, try different ways of breathing. You will be surprised once you are acclimated how little you notice it most of the time.

It also sounds to me like you might be a person who is more sensitive to stimuli than most. This means that your nervous system is more highly tuned so things bother you more. It may be harder to adjust. There's a woman who's written a book about it. Here's her website. It may help you understand more about your reaction to the cpap.

http://hsperson.com/

She's written about "The Highly Sensitive Person and Love" and "The Highly Sensitive Person and Work." I think she needs to write a book about "The Highly Sensitive Person and CPAP." I'm only half-joking about the book.

Based on her test, I scored in the highly sensitive range. This was before cpap. I'm still highly attuned to stimuli, but not as much an irritant now that I'm no longer sleep deprived. I just marvel at the variety around me and the nuances of what I see, hear, and feel.

Best of luck to you.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): swift, CPAP, DME

Did I miss where you said what kind of machine and mask you have?

Apparently another victim of the "Medical Profiteers"......THEIR profit is more important then YOUR health.

Den

Yes, I'm freaked. I'm freaked because I don't know a thing about the sleep center I was sent to and don't know how reliable they are, I'm freaked because I don't know enough about machines to make an informed decision, I'm freaked because I got (literally) a 2 minute tutorial on a machine I'm supposed to be able to use and maintain, I'm freaked because I feel that I did not have any choices presented to me, I'm freaked because this is the only place I can find anyone who will talk to me about all of this!
Ah, I'm better now...

I think I will return this machine and go to my GP and have him give me a script for a real machine and mask. I just don't trust the sleep center DME anymore and I'm not sure that I want to give them another chance. I feel as though they took advantage of me because I don't know which end is up. My healthcare provider can and will guide me through getting a proper machine.

You all are the veterans here and I thank you for fighting this war before me and supporting me now. You've given me more useful information in just a few days that I could have gotten in a lifetime.

And, even though I called the sleep center yesterday afternoon and they said they'd call me today, they haven't. Makes me think they're really there for me, know what I mean? I think I'm just getting ripped off.

[quote="SleeplessinCLE"]Yes, I'm freaked. I'm freaked because I don't know a thing about the sleep center I was sent to and don't know how reliable they are, I'm freaked because I don't know enough about machines to make an informed decision, I'm freaked because I got (literally) a 2 minute tutorial on a machine I'm supposed to be able to use and maintain, I'm freaked because I feel that I did not have any choices presented to me, I'm freaked because this is the only place I can find anyone who will talk to me about all of this!
Ah, I'm better now...

I think I will return this machine and go to my GP and have him give me a script for a real machine and mask. I just don't trust the sleep center DME anymore and I'm not sure that I want to give them another chance. I feel as though they took advantage of me because I don't know which end is up. My healthcare provider can and will guide me through getting a proper machine.

You all are the veterans here and I thank you for fighting this war before me and supporting me now. You've given me more useful information in just a few days that I could have gotten in a lifetime.

And, even though I called the sleep center yesterday afternoon and they said they'd call me today, they haven't. Makes me think they're really there for me, know what I mean? I think I'm just getting ripped off.

[quote="SleeplessinCLE"]I went for a sleep study, then a 2nd one and came home with a CPAP machine. That night at the study was the worst night of my life. I apparently tried to cough in my sleep and nearly choked to death because of all of the rushing air. I woke up more that night, than I ever had in the past.
Besides that horrible, terrifying experience, I have another HUGE issue with the CPAP. It's hideous!! I just cannot bring myself to put on that headgear and mask and lay next to my husband.

Question: How do any of you with these machines accomplish having spontaneous sex with your partner? I just can't see how it could be done. I mean there you are, tethered by a snorkeling hose, unable to open your mouth or move and...

Please don't think that this is a joke. It's not. How do you ever feel sexy or attractive wearing one of those things?

Sleepless, talk to your GP about a different sleep lab. The level of apathy you're describing in your posts makes me think the lab you went to was an "apnea mill" and had no idea of what to do with you.
Y'all may find it interesting to know that the dirty little secret of the sleep medicine world is this: It is perfectly legal for some Joe Schmoe to open a sleep lab, hire somebody off the street, and have them perform a sleep study and PAP titration. I'm a registered respiratory therapist and a registered polysomnographic technician. I work in a small 2-bed hospital-based lab. Any lab that ignores your questions is deplorable......but perhaps thay don't know the answers themselves??