New to CPAP, having some serious issues, could use some help

[sleepyinstlouis]

Hello *waves* As the subject of this post indicates, I am new to the world of CPAP. I am not unfamiliar as my father spent nearly 20 years on one, way back in the days when the machine was a gigantic beast and noisy as heck. Before he passed away, he had one of the newer models with a humidifier (this was in 2005).

My journey started with a sleep study that my doctor recommended because of high blood pressure. My first visit was terrible with an incredibly uncomfortable bed that did not allow for me to get much rest at all. I kept insisting on going back for another one in one of the better beds (hospital beds do not make for a good sleep study). The doctor was adamant that they got good info and set me up for a second study on a CPAP. That went slightly better as I was fortunate enough to get a Sleep Number bed. However, the mask I had was terrible and leaked nearly all night, not to mention I dealt with rainout, so I did not get a good night's sleep. Again, I made this known but it was seemingly swept under the rug. The diagnosis from the two studies was hypopena, so I get a machine to sleep with from now on instead of my husband.

About a week later I was contacted by the DME company and was set up with a Respironics ProStar M C-Flex with Heated Humidifier and a ComfortGel Nasal mask. I tried the nose pillows and it felt like someone was jamming something up my nose, not to mention it made it hard to breathe.

With that out of the way, I am struggling with this. I spent my first four nights with little to no sleep and came back from work after the Memorial Day weekend so deprived of sleep I broke down at my desk not long after I got in. I was sent home and my sleep doctor prescribed Ambien for me (5mg) to relax and sleep, but I do not sleep through the night. I will fall asleep, only to wake up about 2-3 hours later and spend the rest of the night up trying to tire myself out. I just want to sleep through the night like I did before this whole thing ever started. I feel like I'm getting worse sleep than I ever did before this. The sleep deprivation is not helping me any and makes me incredibly achy and irritable. I'm very concerned that if this keeps up, I'm liable to make a mistake on the job and end up unemployed. This is something that I have stressed with the nurses and doctor. Unfortunately I cannot go to another doctor because all the hospitals here apparently use this clinic for sleep research, so I'm pretty much stuck.

Can anyone give me suggestions/help/anything. I'm to the point where I want to return everything and tell them that there has to be another way. I cannot go on like this.

[Fafner]

First of all..welcome to this forum and know that you are not alone in having these experiences and that you WILL get thru this phase of your therapy. At the start of my therapy last June I had so much trouble that I thought I might even need a psychiatrist's help. My experiences mirrored yours re. seeming to be even more exhausted than before, feeling suffocated, getting up in the middle of the night, regretting that I ever moved forward with the suggested Sleep Study and ready to just give up.

Scan the forum's archives and monitor continuing exchanges and you will find many valuable answers to your concerns because we have all been there.

Stay with this! We will all help!

[BeanMeScot]

The first week I was on CPAP, I was much more tired than normal. And I would wake up several times during the night. But all that passed. I still wake up one time a night to turn over but I go back to sleep quickly and easily. I don't have to get up to pee at all. I feel rested on less sleep. It feels like the air blowing in my mask is nothing.

Just keep with it and work through the issues. You can get there, too.

[ozij]

If your machine is a Remstar M Series Pro, you can use it to track your own sleep data. So instead of turning it in, use it to have you own cpap titration at home - in the comfort of your own bed.

You may be able to find the kind of pressure that will be good for you.

Getting used to cpap therapy was very difficult for me in the beginning too - if you can, take time off from work -- the way you would if you had broken a leg.

The diagnosis from the two studies was hypopena, so I get a machine to sleep with from now on instead of my husband.

That sounds wrong - I wouldn't want to sleep with a machine instead of with a human being. If you're not joking, then this is something that has to be solved. No reason not to sleep with both - and masks can be removed pretty fast...

O.

[kay53]

The sleep doc told me that it would take at least 60 days to get used to being on the CPAP - so I started with the idea that I was not going to feel great right off the bat which I think lessened my anxiety. I also had some really "good nights" during that first couple of weeks which encouraged me. My regular MD also gave me Xanax - very low dose - and Ambien 10 mg [/b]which I still take every night (I only take the Xanax occasionally now). There are two kinds of Amien - the regular and the Ambien CR and I have taken both (obviously not on the same night). Right now I am on the regular Ambien as I am staying asleep all night. I love those nights when I sleep a full seven hours and wake up with the mask on, but most of the time I take it off after about 5 - 6 hours and throw it on the floor. Of course, I don't remember doing this. I am not a medical professional, but you might want to talk to your doctor about trying the Ambien CR, or increase your dose to 10 mg instead of 5. I do feel kinda groggy when I first wake up but that goes away quickly. Not getting the sleep you need also makes you depressed and anxious. Talk to your doctor about how you are feeling. The whole thing is quite difficult to get used to (I have not completely accepted it yet either) but please keep in mind that this adjustment period can take a long time. You also might practice using the CPAP while watching TV in the evening. Kinda helps you get used to it. My sleep doc even suggested I walk around the house with the mask on during the weekends (No thank you!) By the way, if you felt too much pressure with the nose only gear, you were not fitted right. They aren't suppose to be that tight. Please keep reading this site - it has helped me tremendously.

[Gerald]

Sleepy.....

Here's how to start getting out of trouble.....

1. Please fill out your profile....so that we can know what equipment you have. Use the "written" style of profile....not pictures.

2. Let us know what pressure was prescribed for you

3. Cram (like you would for final exams) all the info listed with the yellow lightbulb at the top of this page.

4. Immediately order Respironics "Viewer" software....and a card reader...from CPAP.com (the sponsor of this forum).

Don't give up. There's a bunch of very nice people on this forum who'll do everything they can to see you succeed.

Gerald

[yardbird]

If the nasal pillows felt "jammed up" you nose, then they were adjusted incorrectly (way too tight). Nasal pillows rest gently against the OUTSIDE of your nostrils and when the air pressure comes on they kind of inflate to form a seal.

Regardless... the mask is the hardest part. If you get one that you can sleep with in comfort AND it doesn't leak, then you have this 99% licked.

[sleepyinstlouis]

Thanks for the replies. I'll try to address the responses as best I can.

@ Fafner - thank you. I think about this and I just want to cry because I am so frustrated and tired. I don't do well when I'm like this and tend to turn onto an emotional wreck. All I want is sleep. That ends up being my mantra. I feel like I'm just losing it.

@ozji - I've discovered that now, from looking at different sites I can monitor the machine. I really can't take time off work without serious repercussions. The only way I was able to get two days off was because of my meltdown when I came back from the Memorial Day weekend. Unless I can convince my doctor that I need to be written a note for mental time (which doesn't sound like too bad of an idea), it's not going to fly with my manager.

@kay53 - my sleep doctor upped me from 5 to 10mg for the next few days starting tonight for the next few days to see how it works. Do you take xanax around bedtime or sooner? I have some leftover from when my regular doc prescribed it for some anxiety issues I had last year. I wonder if I should talk to her about maybe giving me a regular prescription or maybe a referral to a psychiatrist to see if that would help.

@Gerald - I would love to purchase the items you suggested, however money is not plentiful at the moment. I've got a bill from the hospital for the 1st sleep study, with a second one on the way. Both after the insurance picked up its share of costs. I had to fight the DME to be "approved" for their financial aid so I could at least leave their office that day with the CPAP machine. My presribed pressure is 12, and I start the machine and go to the ramp up. The full pressure is too much for me to try to get comfortable right away. I have to psyche myself to get ready for it by putting onthe mask, trying to relax, hooking up the hose and turning on the machine.

@yardbird - there weren't many sizes to choose from at the clinic, so I had no choice but to go with what they offered me. again, it did not make for a comfortable night with so many leaks. I got the feeling all they wanted to see was something so they could justify writing a prescription for the machine. I don't know how true that is, but it certainly feels that way. I'm not saying I don't think I need this, but I really do feel that they could have done a much better job making sure that I was fitted properly and that I was comfortable.

[Sleepy Taz]

Sleepyinstlouis,

I am a long time cpap used (20 years) and I can testify that after a short period of time you will not be able to sleep without your machine. yardbird was correct on the nasal pillows and the same hold true for most masks. New users overtighten most of the time which creates morel leaks and can leave marks on your face. My pressure is set at 17 and I have used the pillows for about six months now and will never go back to a regular mask. The best thing that you can do is relax and remember that this is therapy to help you sleep better and live a normal life. If something isn't working after a week or two work with your sleep doc and DME to find something that will. AA uses a 12 step program to help alcoholics stop drinking and I think that many of those steps apply to new cpap users as well. Cpap therapy is not the end of the world and in many ways your life will improve once you have adjusted. Keep plugging and let us know how you are doing and remember, take it one day at a time and it will be easier to conquer.

[SaltLakeJan]

Oh Sleepyinstlouis.
If you were to pull up my initial posts, you might think you were reading your own. "

"The nasal pillows have blocked my breathing; and to have something like a vacumn cleaner blowing gale force winds up my nose is so cruel, it would be outlawed if they did it to a dog"

Initially, I called the doctor saying the insane pressure of 8, was blowing my head off. For a beginning state, she lowered it to 5, which I quickly adjusted to. I called the dr. back and said If they didn't object, I would increase my pressure every few days 'till it was back to 8. (which I did)

After a rocky start with my DME, I got a different R.T.,. He gave me suggestions that helped me. I have sensitive nares
and the pressure of the nasal pillows blowing forcefully into my nose created raw places. A good fitting mask is crucial for your success. You may laugh at the statement "Good Fitting Mask" but it will come. Many on the forum have pillows mask and think they are the greatest, but they didn't work for me. I changed to a Fisher & Pykel Zest Nasal Mask, it is comfortable, and I wear it all night without problems.

The R.T. also told me that initially many people can't go the entire night trying to force themselves to keep the mask on. He said if you awaken and it is 1:00, and you can't stand the whole thing, take the mask off. Do this for a few nights, and as you become accustomed to it , you will leave it on longer and longer. Again this worked for me, helped with the sleep deprivation, and within a short time, I could leave it on all night.

You may not believe it now but since you found the forum in the beginning, you are very fortunate. Those who have been through, what you are experiencing, will gladly give you help. The suggestions that worked for me, may not work for everyone, but here, you will get help, suggestions, and ideas that wiil carry you through this beginning part which is the roughest.

My very best to you,
Jan

[sleepyinstlouis]

Thank you for the replies and encouragement. Last night, I kicked hubby out of the room and made him go into another part of the house to watch tv or whatever he wanted to do, took the ambien and went to sleep. As expected, I woke around 1:45am, but rather than get up, as I just didn't feel like it, I went back to sleep and didn't get up till the alarm went off.

I'm still feeling a bit foggy, but I don't feel exhausted like I have been.

[sleepyinstlouis]

Hello everyone, I know it's been a while since I posted, and hopefully there's no issue with necroing an older post. I wanted to give an update on my progress into this new stage of my life.

My sleep doctor was not too happy with my progress of little sleep so he upped my ambien to 10mg and gave me a 90 day supply that I had to pay out of pocket for. Fortunately, I'm a member of Sam's Club so I got a good discount that didn't break the bank. Over the last couple of weeks they've been weaning me off the pills: 10mg for the first week, 5mg for the next week, 2.5 for the third until I can finally fall asleep on my own.

My level of comfort has gone up now that I have some time before hubby comes to bed to relax and get to sleep. I'm supposed to start this coming weekend with no ambien to see if I can fall asleep on my own. If so, then this will be a milestone for me. It's working out, slowly but surely. I've been told I look better and I do feel better now that I'm getting sleep. The thing that amuses hubby is that I stay in one position all night and I'm not rolling over to "squish" him.

All in all, I think it's going well.

[ozij]

Thanks for the update - I appreciate your taking time to write it. Glad to know you doing better!
O.

[BeanMeScot]

Sounds like you are doing fine!