I really need some help.

Hopefullady · Post by **Hopefullady** » Mon Dec 21, 2015 5:28 am

Hi all. I am trying to use my CPAP each night but it's just but working. Something is wrong.
I am absolutely exhausted beyond belief. Slept from about 10pm to 4:30 this morning (always wake up too early, unrested with big bags under eyes, more tired than when I went to bed).

I got a new mask (size small - see my signature for details) and it's tiny. DME guy was dirt of in a rush; not sure if I should go back to my medium size. Made a mask liner out of old PJs which helps with leaks.

Problem: Have muscle pain in arms and legs while side sleeping, so have to sleep on back. Apnea is much worse on back. My mouth opens when I'm back sleeping. Is this ok?

After 2 hours or so I always take off mask. I am asleep when I do this is I can't remember "why" I take it off. I only know I wake up with machine still running and mask off.

I raised bottom pressure myself from 5-7. This feels fine and I like it while awake. Last night AHI was 4 and 90% was 8. Mask fit was 67%. Don't know how accurate these numbers are since I unhooked hose from mask and it kept running for 4or 5 hours more on its own.

I'm tired beyond belief and am waking up with chest discomfort and nerve problems on left thumb. It's scary.

I've been exhausted for years.

I've been asking for help from docs but they need to see me. Problem is, I'm stuck living 2 hrs away at my parents summer home an have nowhere else to go. They are about to kick me out (they're abusive and are taking advantage of my exhaustion and situation). I have no friends or family left due to all the abuse I've taken from everyone around me and my not speaking up. So I'm facing a shelter situation. I'm really scared that I'm going to die out there.

My apnea has been considered mild but sleep study was short and I didn't sleep on back. I wish i had the luxury of a safe place to go and my own bed so I would have time to get a titration study and work all this out.

blownaway · Post by **blownaway** » Mon Dec 21, 2015 6:05 am

How old are you? Adult or juvenile?

You have it together enough to write this intelligent post, so I would think you have the ability to extract yourself from this situation. You are not alone with such problems, many others have traveled that path.

Problems are solved one at a time, so identify your most serious problem and start with that. There are no magic bullets. It takes a little help and a LOT of effort on your part.

You'd probably be wise to start with removing yourself from the clutches of parents if you are an adult, which it sounds like you are. Your writing is very literate.

Then, there are government agencies that can help with keeping you off the streets and dealing with your issues, especially if you are not capable of holding a job. There are programs that will work with you to get you to the point where you can.

Pugsy · Post by **Pugsy** » Mon Dec 21, 2015 6:20 am

After about a minute or so of your machine running after you have taken your mask off it won't register as a large leak...it will register as no breathing detected so the leak rate won't be artificially high due to the mask being off.

My mouth opens when I'm back sleeping. Is this ok?

Mask fit was 67%.

Are you using a full face mask? That's what is showing in your profile...if mouth drops open and you mouth breath it won't hurt anything if you are using a full face mask.
Now if you are using a nasal mask then there could be serious loss of therapy pressure from that mouth breathing.

Some of that 67% mask fit will be the machine blowing without you being attached but not all of it.
It doesn't take the machine long to realize there is no breathing on the other end and stop thinking that there is a big leak. The bulk of your poor fit leak number is fitting leaks.

Is this chest discomfort you are experiencing something new or is it long term?

Sheriff Buford · Post by **Sheriff Buford** » Mon Dec 21, 2015 6:26 am

Sorry to hear about your situation. I think if you get your cpap problems fixed, at least it will make feel better.... after some time. I'd go back and get the medium size. Place some tape on your mask (a little on your face and a little on your mask) and when you take the mask off at night, it will wake you up. Work each of you issues here. We will help you thru this.

Sheriff

Hopefullady · Post by **Hopefullady** » Mon Dec 21, 2015 6:28 am

Thanks. I know - my situation seems that of a teenager but I'm 50. Toxic family dysfunction can keep people sick for years in many ways. The exhaustion has always been what's holding me back.

I am in fact highly intelligent and very capable...I began to come out of denial 5 years ago and started to see what was really going on in my family. I was also a very beautiful, kind woman and people got nervous when I started getting well...I had a voice. So everything possible has been done my many people who were uncomfortable with my wellness and change ..

Some other things happened that have to do with an untrustworthy AA sponsor and other people...the result was a huge character assassination and trauma for me. That trauma turned into stress and fibromyalgia and other physical conditions.

My solution is speaking up with the truth. Facing my fears. Dealing with reality. But I need rest in order to do that.

It's really sad that I have been reduced to this. None of it was necessary.

quote="blownaway"]How old are you? Adult or juvenile?

You have it together enough to write this intelligent post, so I would think you have the ability to extract yourself from this situation. You are not alone with such problems, many others have traveled that path.

Problems are solved one at a time, so identify your most serious problem and start with that. There are no magic bullets. It takes a little help and a LOT of effort on your part.

You'd probably be wise to start with removing yourself from the clutches of parents if you are an adult, which it sounds like you are. Your writing is very literate.

Then, there are government agencies that can help with keeping you off the streets and dealing with your issues, especially if you are not capable of holding a job. There are programs that will work with you to get you to the point where you can.[/quote]

Hopefullady · Post by **Hopefullady** » Mon Dec 21, 2015 6:34 am

Thank you Pugsy and Buford.

The tape is a good idea. Still confused as to how much of that mask leak rate issue to actual leaks but I'll find out more on that today.

Chest discomfort and other signs of longterm exhaustion have been happening for a few years. It's all due to exhaustion, yep.

Pugsy · Post by **Pugsy** » Mon Dec 21, 2015 6:44 am

The actual time in large leak vs time with mask off is easily seen on the software reports.
Unfortunately as you know Sleepyhead doesn't work with your machine yet so you would have to use Encore.

At this point though...while leaks are a potential issue of course...your taking the mask off prematurely and not sleeping well with it is a bigger issue.

Julie · Post by **Julie** » Mon Dec 21, 2015 7:13 am

You have a PM.

Hopefullady · Post by **Hopefullady** » Mon Dec 21, 2015 8:23 am

Pugsy wrote:The actual time in large leak vs time with mask off is easily seen on the software reports.
Unfortunately as you know Sleepyhead doesn't work with your machine yet so you would have to use Encore.

At this point though...while leaks are a potential issue of course...your taking the mask off prematurely and not sleeping well with it is a bigger issue.

Thanks Pugsy. I will call DME now and ask them about the actual leak rate.

Sleeprider · Post by **Sleeprider** » Mon Dec 21, 2015 10:05 am

Hopefullady, your current issues seem to center around mask fit. This should be relatively easy for your DME to remedy. A different style or size may be all it takes. Also, there are a number of specialty CPAP pillows that can facilitate side-sleeping with a FFM. You would have to purchase an accessory like that on your own. Your problems with leaks and comfort have been the topic of several threads, here and on the Apneaboard. If you can't get your DME to service this need, then switch, or buy online from a provider like CPAP.com that provides a 30 day return warranty.

Get the fit you need, and the rest should fall into place. More than machine settings, mask fit and comfort is the key to making this work.

Hopefullady · Post by **Hopefullady** » Mon Dec 21, 2015 10:15 am

Thank you Sleeprider.
I agree that I need a specialty pillow and a better mask fit.

Also FINALLY got someone on the line at the DME who spent the time with me I needed and explained so much more. I had been practicing breathing deeply with this machine instead of just breathing normally - or even shallowly. He got me to get my mind off numbers and concentrate on keeping that mask on - and putting it back on if i take it off, and getting used to the whole process.

I believe each new patient should have someone explain all of this to them, not just be tossed a machine with no understanding of how it works and what to do.

I'll keep at it

Sleeprider wrote:Hopefullady, your current issues seem to center around mask fit. This should be relatively easy for your DME to remedy. A different style or size may be all it takes. Also, there are a number of specialty CPAP pillows that can facilitate side-sleeping with a FFM. You would have to purchase an accessory like that on your own. Your problems with leaks and comfort have been the topic of several threads, here and on the Apneaboard. If you can't get your DME to service this need, then switch, or buy online from a provider like CPAP.com that provides a 30 day return warranty.

Get the fit you need, and the rest should fall into place. More than machine settings, mask fit and comfort is the key to making this work.

Heart Jumping · Post by **Heart Jumping** » Mon Dec 21, 2015 10:20 am

Hopefullady wrote:Hi all. I am trying to use my CPAP each night but it's just not working. Something is wrong. I am absolutely exhausted beyond belief.

I'm sorry if you already set it and I missed it, but how long have you been on CPAP? It's actually quite common for people to be exhausted at first until they get used to it and find a good mask fit and best settings etc., but that should improve as the first couple weeks/months go by, assuming the other issues (mask etc.) are in order. I can't tell from your comments if it's been weeks or many months?

Hopefullady · Post by **Hopefullady** » Mon Dec 21, 2015 12:50 pm

Heart Jumping wrote:
Hopefullady wrote:Hi all. I am trying to use my CPAP each night but it's just not working. Something is wrong. I am absolutely exhausted beyond belief.
I'm sorry if you already set it and I missed it, but how long have you been on CPAP? It's actually quite common for people to be exhausted at first until they get used to it and find a good mask fit and best settings etc., but that should improve as the first couple weeks/months go by, assuming the other issues (mask etc.) are in order. I can't tell from your comments if it's been weeks or many months?

Heart Jumping

Thanks for your response. Interesting screen name. Hope all is going okay for you now.
In new to this, about 10 days in. I appreciate your support.

Heart Jumping · Post by **Heart Jumping** » Mon Dec 21, 2015 11:02 pm

Hopefullady wrote:
Heart Jumping wrote:
Hopefullady wrote:Hi all. I am trying to use my CPAP each night but it's just not working. Something is wrong. I am absolutely exhausted beyond belief.
I'm sorry if you already set it and I missed it, but how long have you been on CPAP? It's actually quite common for people to be exhausted at first until they get used to it and find a good mask fit and best settings etc., but that should improve as the first couple weeks/months go by, assuming the other issues (mask etc.) are in order. I can't tell from your comments if it's been weeks or many months?
Heart Jumping

Thanks for your response. Interesting screen name. Hope all is going okay for you now.
In new to this, about 10 days in. I appreciate your support.

Thanks Hopefullady. I'm a firm believer in knowing the challenges you MIGHT face with something up front makes it easier to deal with them. So it may help you to know that's it's very common for new users to feel exhaustion. I'm about a month into my treatment and I can tell you that while I was greatly hoping for increased energy, my initial reaction was one of complete and utter exhaustion, I was felt more tired than without CPAP. However I knew the dangers of not using it and the potential benefits and stuck with it.

I no longer feel that exhaustion at all and am starting to experience some benefits. Finding a mask that worked well for me was huge, and part of it was just adapting. Even now though I still often lay awake trying to get used to the breathing part, but it's so much easier and sleep is now so much better.

Also, please don't expect it to be a straight line of getting easier, I always remind myself success is going to look like the image below . If you keep experiencing issues remind yourself that it's going to get better, or to post searching for solutions to what's making it difficult. Best of luck to you!

Mudrock63 · Post by **Mudrock63** » Tue Dec 22, 2015 5:05 am

Hopefullady: You came to the right place for help. I've learned more from reading this board than I ever did from sleep technicians, doctors, etc. I took the mask off twice in the early goings. It is just an adjustment thing. It happens. Once you get a good, comfortable fit, you will get used to it and probably stop taking it off in the middle of the night. I am to the point now where I would not be able to go to sleep without it. That is another adjustment. When I first put it on I concentrate on getting comfortable, both in sleeping position and in breathing with the flow. Once I know it is working and get that last nose itch out of the way, I am usually asleep in just a few minutes. Now that I am used to it, the therapy itself never wakes me up.

The biggest steps you can take, IMO, is acceptance that the apnea MUST be treated, and a huge commitment to learning a lot of stuff that will help you manage your care. You have to be real sick and tired of being sick and tired. I too feel like I was thrown a machine and little else. No support. My sleep technician recommended a setting that was way too low to treat my level of apnea. I have learned here how to manipulate the settings on the machine, read the reports on the sleep I am getting, and get intelligent advice on what may work in my individual circumstance. If left to the doctors, I would still be slogging away at a pressure that was not helping me much, and would be very discouraged at this point. Instead, I am making progress and feel really good about where this is going.

The thing is, it can be very challenging trying to learn everything involved with this condition. It is also challenging to put yourself out there, and out of your comfort zone trying new things, like posting screenshots, etc., which I personally had never done. And the hardest part is motivating yourself to follow through when you just feel so dang tired and fatigued. But you have to make yourself do it. Even with my limited progress, I already after two months know I never want to go back to how I felt before getting the machine. I would also bet that once you address your sleep and fatigue issues, some of your other health issues will start to fade or at least not be as severe as you are suffering now.

As to family issues......obviously you are in a severely dysfunctional situation with them at this point. I was raised in a family that drank every day. It was so ubiquitous that when I spent the night out as a child, I was shocked to learn other people's refrigerators weren't full of beer and not much else. I didn't know any better and embraced the lifestyle for many years. Then at some point, working shift work and drinking all the time wasn't working for me anymore. This is before I knew I had sleep apnea. Drinking was starting to affect my job performance, so I came to the personal decision that that lifestyle was not going to work for me anymore. My family took that personal decision as a personal slight. They thought that me no longer partaking in all-day family drinking events was some sort of judgment on them, when it really wasn't. Trust me, the peer pressure exerted was enormous. You know what? I stuck to my guns. Have not been a regular drinker for almost 20 years, and now get along with my family just fine. I like to think I showed a few of them that you can survive and thrive without alcohol being a part of your life every single day of the week. The point of this story, if there is one, LOL, is decide who and what YOU want to be. And don't worry about everyone else. People hate change. They like to be able to count on those around them being the same and predictable year after year. Well, life is not like that. People change, and it's up to others to accept or not accept that change. It is up to YOU to order your life in the way that suits you best and makes you happy. My final thought is you can't be happy with yourself if you are angry and carrying grudges against other people. Much easier said than done. In fact, it is very difficult. But you must, or you are never going to be truly happy. One of the things I love about my relationship with God is I can give things up and let Him worry about them for me. I also pray for strength and wisdom to deal with the adversities that life inevitably throws our way. I am not a Bible-thumper, and believe everyone must find their own path in life. But is is a long, difficult road if you don't have SOME sort of spiritual support, whether Christianity, Buddhism, you name it.

Truly hope you get through your troubles and find your happy place. Now back to step one..........sleep apnea.

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