Need support

[Sleepy2011]

I need some motivational support. I’m having a hard time adjusting to this therapy.

Here my story
I’m in mid 30’s about 40lbs over weight, I have high blood pressure, celiac disease, and have suffered from depression, anxiety and insomnia for the last 10 years.

I have been treated for depression and anxiety on and off for the last 5 years. I tried several pills and had really bad side effects. It was finally recommend that I see a sleep Doctor.

I went to a sleep Dr and was told I have insomnia and restless leg syndrome and I need to have a sleep study to see if I have sleep apnea.

So I did the sleep study a little over a month ago

The first night was really bad and they woke me up at 6am and DR came in and told me I may not have slept well enough to diagnosis sleep apnea. He gave me ambien and told me to come back that night to either redo the study or get setup for a CPAP.

So I came back that night and I guess there was enough data to set me up with a CPAP. The nurses made a couple of comments about how poor I slept the night before. So I tried several masks and I found one that worked. Took my ambien and fell asleep. I was woken up at 6am and I was pretty much in an ambien coma when the DR came in. He told me I would be getting a CPAP and the pressure would be 8 and I would get it in a couple of weeks. So I did not get a whole lot of details.

So I got my ResMed S9 elite about 2.5 weeks ago, they did not have the mask I had used during my sleep study, after trying several more I settled on the ResMed Swift FX.

Last night I wore the mask 8 hours, but I really did not sleep much. I even took 2 benadryl and they only made me drowsy but did not help me sleep.

I’m averaging about 7 hours a night wearing the mask for the last week.

My major problem is feel absolutely horrible every morning. I’m so tired and have a very hard time getting out of bed. I was hoping I would start to feel better by now.

I guess I’m just looking for some support.

My Equipment:
Machine: Resmed S9 Elite
Mask: Swift FX Nasal Pillow
Humidifier: S9 Series H5i Heated Humidifier

[ameriken]

I don't know how I can help, I just wanted to welcome you and let you know you're not the only one. I'm sure more will be along that can give you some more specific help. All I can say is hang in there.

Are you monitoring your sleep with software?

[cflame1]

are you not sleepy because of the equipment... or would you have been not sleeping without it?

[Sleepy2011]

I'm not sure ...I think I would be sleeping better without the CPAP.

Here my data from last 19 days

[ems]

I'm a newbie as well and really understand where you are coming from.

I can only tell you that a couple of weeks isn't enough to assess how you will do on the machine. It's about six weeks for me... and I'm nowhere near comfortable with it by any means. I might suggest that you speak to your doctor about giving you something to help you sleep for awhile. While I don't advocate meds as a forever thing, perhaps it could get you over the hump.

Also, have you tried the pillows... don't remb if you said anything in your post. Many people find it much easier to deal with than the mask... me included!

I recently found out I have early onset diabetes, type 2. I need to lose weight also, probably 20 pounds, and right now find it hard to do. Getting use to the machine is hard enough. But, I'll get there, and so will you!

If you read around here, you'll find so many people have/had the same issues we have. They are kind and quick to answer every stupid question you could possibly come up with... I've asked many.

Hang in there... give it time... it will all come together for you!

[Sleepy2011]

More Data

[moresleep]

Looks like you're probably not yet sleeping enough hours per night to feel rested--unless five is normal for you. Is there anything that's causing discomfort, such as mask leaks? Also, be on the lookout for breathing through the mouth, allowing pressure to escape. This was a problem for me. I noticed you are experienced centrals; if you know how to adjust your CPAP, you might consider lowering the pressure to 6 or 7, to see if they go away.

Good luck, and please don't give up!

[apneawho]

Definitely give yourself more time. I am 3-4 weeks into my therapy and I was writing with almost the same sentiments the first week. I expected the overnight miracle cure, but it hasn't happened for me. I am slowly but surely feeling better as the days go on and hope you will too. From what I have heard, each individual case is unique. Have reasonable expectations and some small goals in terms of educating yourself and feeling more comfortable with therapy. This is a great group. Stick with it. We are all in the same boat and we have been or will all be where you are from time to time. Ask questions and use the advice given. You are correct in knowing that support is important. We are here for you.

[DoriC]

I'm no expert but since your pressure is pretty low, I might make a suggestion to lower your EPR to 2 or even 1 which might help with some of your events. Each level of EPR lowers the pressure by that number so an EPR of 3 is lowering your pressure to 5 when you exhale which may causing events to slip through. EPR is only an individual comfort feature which many turn off after awhile even at higher pressures once they adjust. Oh, and if you really had a more comfortable night with the titration mask, the DME should be able to order it for you if they don't stock it. Getting the right mask is key. Good luck and keep us posted.

[ozij]

I'm no expert but since your pressure is pretty low, I might make a suggestion to lower your EPR to 2 or even 1 which might help with some of your events. Each level of EPR lowers the pressure by that number so an EPR of 3 is lowering your pressure to 5 when you exhale which may causing events to slip through. EPR is only an individual comfort feature which many turn off after awhile even at higher pressures once they adjust. Oh, and if you really had a more comfortable night with the titration mask, the DME should be able to order it for you if they don't stock it. Getting the right mask is key. Good luck and keep us posted.

Sounds like excellent, expert advice to me. None of us (except for NotMuffy) are really "expert" here. But Dori speaks with the voice of experience.

Welcome, and good luck, sleepy2011.

[archangle]

I noticed you are experienced centrals; if you know how to adjust your CPAP, you might consider lowering the pressure to 6 or 7, to see if they go away.

Good luck, and please don't give up!

If your average number of centrals is really 1.4/hour, don't worry about centrals, but it would be good to look at the waveform for the central apneas. Are you using Resscan? Does it show flow waveforms?

How did you get a higher pressure on August 4?

You can usually exchange a mask for free with the DME if it's been under 30 days. Don't let your time limit pass. Don't let him delay you until the time runs out. Do you know what the mask was that you liked?

You need to fix those leaks. Is air leaking around the mask? Out of your mouth? You may be leaking air out of your mouth. Do you wake up with a dry mouth? That in itself may keep you from benefiting from the therapy. You may need to try a chin strap. Leaks can also screw up the ability of the machine to score how many apneas you have.

You actually don't sound that bad for a CPAP newbie. You may need to work through some problems to get CPAP right.

Is anything in particular bothering you when you're hooked up and trying to sleep? Pressure, leaks, noise, etc.?

Please enter your equipment into your profile. There's a link at the bottom of this post.

[justbreathe]

When it comes to CPAP having a plan has helped me and I am still just 30 days old.

Plan:
Find a mask I can sleep with.
Fix the leaks
log enough hours of sleep
address centrals

I use the swift fx nasal pillows. It works for me. Use your mask when not sleeping to get used to it. Do this every day for 30 min to an hour before you go to sleep.

I had mouth leaks. I got a chin strap and had to get used to that and it stopped my leaks. I am now able to sleep without it and have learned to keep my mouth shut. It took some time.

Clearly you are not sleeping enough. No matter how good you are with your cpap it is not a substitute for sleep. You have to use it. and you have to stay in bed. If you take naps throughout the day then you need to use your cpap at those times. You need to shoot for 7-8 hours use a day. Without enough rest you will be sleepy.

I have about 9 centrals an hour and am still waiting for Dr. to address it. I think I will be on an ASV shortly. Then I will have a new learning curve.

One step at a time is all we can do.

[robysue]

Sleepy2011,

Welcome to the board. And also I bid you a sad welcome into the CPAP& Insomnia club.

Others have given you many good suggestions on the CPAP end of things. It does take time and you can't expect instant results. For most people, it takes several weeks to a few months to start noticing that they feel better with CPAP than without it. But some of us take longer, sometimes quite a bit longer. And the fact that you have a long history of insomnia and other medical conditions as well may very well mean that you wil have to work extra hard to make CPAP work for you. So realistic expectations for CPAP therapy are very important in keeping you willing to continue working on making CPAP work. Too many folks give up on CPAP simply because they didn't start feeling better "fast enough".

What I mean by all this is pretty simple: You have to actually sleep with the mask before the CPAP can do you much good. As long as you're not sleeping, there's a real limit for how much CPAP can do to make you feel better.

And my guess is that in addition to the OSA, there are a number of other issues involved in your long history of not sleeping well. In addition to the insomnia, you say that you've struggled with depression and anxiety for years. They also affect your ability to get a good night's sleep. And if you have any pain from the celiac disease, that too can adversely affect your sleep.

And so here's where things stand right now: CPAP can (and should) prevent most of the arousals and desats caused directly by the OSA. But it cannot and will not directly fix other medical issues that are causing problems with your sleep. In particular, unless the OSA is the primary cause for the depression, the anxiety, and the insomnia, the CPAP will not fix the problems with fragmented sleep triggered by these conditions. And until those issues are better under control, you are likely to continue to have problems with daytime sleepiness, daytime fatigue, and a host of other symptoms associated with sleep deprivation in general.

He told me I would be getting a CPAP and the pressure would be 8 and I would get it in a couple of weeks. So I did not get a whole lot of details.

Request copies of your sleep studies with the condensed graphs and data. You need to know more of the details of your condition. It will help motivate you to keep going in spite of your ongoing difficulties. Fortunately the machine you were given is a decent one that records full efficacy data. Others have commented on your posted data. I don't have anything to add to what they've said.

Last night I wore the mask 8 hours, but I really did not sleep much. I even took 2 benadryl and they only made me drowsy but did not help me sleep.

I’m averaging about 7 hours a night wearing the mask for the last week.

As you've already commented, mask time and sleep time aren't the same for you. And quite frankly, until your sleep time starts to look like that mask time, it won't feel like that CPAP is doing you any good.

Brief version of my story: I started xPAP in late Sept. 2010---not quite 11 months ago. I suffered an immediate severe and prolonged crash and burn in terms of daytime functioning that started almost immediately. Severe daytime sleepiness set in---of the sort that I'd never experienced in my entire life. And severe insomnia (worst of my life) had clearly started to invade my bedroom by night 3 of therapy. For the first 3 or 4 months, I felt much, much worse ON CPAP than I'd ever felt prior to CPAP. As in I consistently felt like a hairball upchucked by a cat in distress.

Several pressure changes and a change from CPAP to APAP to BiPAP finally brought most of my comfort issues under control by late December. At that point, I was finally ready to tackle the insomnia that was sucking every bit of good the BiPAP was supposed to be doing for my body right back out of my body, mind, and spirit. And add migraines that had gone chronic to that potent mix of discomfort by the way. The next four or five months involved lots of hard work on the insomnia and repeated trials of migraine meds that I could not tolerate.

After some additional tests were done was a migraine solution found. In May, my first sleep doctor's PAs essentially fired me as a patient (long story). But a switch to a new sleep doc and some additional work on the insomnia (with some new ideas from the new doc) proved to be beneficial. I am now finally bringing the insomnia under control: I can now get to sleep within 5 to 10 minutes of going to bed (sometime between 1:00 and 2:00) and I can now reliably get myself up between 7:00 and 8:00 and actually feel like getting out of bed. So I'm still only averaging around 5 to 5 1/2 hours of sleep and I still have anywhere between 1 and 4 wakes per night: But finally the sleep I'm getting is high quality sleep and the wakes are minor---I'm back asleep within 5 minutes or so for the vast majority of them. Most days, I can tell that I feel better physically than I did a year ago---before starting CPAP. On my best days I feel as good as I did 10 or 15 years ago. There's just not enough of those days (yet)!

My major problem is feel absolutely horrible every morning. I’m so tired and have a very hard time getting out of bed. I was hoping I would start to feel better by now.

As you can see from what I've written above, I too used to feel absolutely horrible every morning---with the CPAP. It's a shame that you're not yet feeling better. But you have to play the cards you're dealt, and you're not a "duck" that takes to CPAP like a duck to water. That means you have to work at solving the OTHER problems too.

What have you done in the past to deal with the insomnia?

What are you currently doing to deal with the anxiety and depression?

How well is the coping with the celiac disease going? Can you stick to the diet without much trouble?

Because until these are "under control", it may be difficult to make much progress towards feeling better. The CPAP just is not capable of "fixing" these issues and they are all capable of making you feel wiped out every day.

For the insomnia, you might want to read through the Taming the CPAP Induced Insomnia monster link in my signature. Not all of it will apply to you, but you might get some fresh ideas on how to deal with it.

Best of luck. You have a lot to cope with.

[Sleepy2011]

I called to get a new mask today. The swift FX really bothers my left nostril. My right nostril always feels fine. It really irritates my nostril opening and it also feels like my breathing is uneven between the left and right.

Last night I only made it with the mask on for 3 hours. I did however sleep much better after the removal. (I know bad) But I really needed some sleep.

Thanks for all the suggestions and support....

[Fitness Seeker]

@Sleepy:
I have also had my machine for 2 wks now. I have the same problem as you. I feel worst and exhausted w/ the mask than the worst nights w/o. The 1st week i had the machine hooked for the entire night. Then i was told to acclimate to it, using it for fewer hours, even 2 per day. i think the mask is ok. (FX Swift nasal pillows). I move alot , toss and turn. The swooshing sounds sometimes keep me up. I have to move to an angle that alleviates that. So now i'm wearing it less and just hoping to acclimate to it. Sometimes i get 5 hours on it. Sometimes i yank it off and put it on in the middle of the night, etc. So don't feel discouraged and keep us posted.