Doesn't this have to get better?

[macewa]

I am so frustrated!

Wednesday night was my first ight with my FitLife Total Face mask and I absolutely loved it Slept great and had pretty good numbers. Yesterday I woke up feeling great and had a very active day. By early evening I could hardly keep my eyes open and if I relaxed and used my eyes, I was falling asleep. So, I decided to go to bed much earlier than I usualy do. (but was distressed that I was so extremely tired). Well, I had a horrid night.

If I might digress, I had very dry lips and one part of my lip cracked and then turned into something like a fever blister, but not really a fever blister, but it hurts. Also, wearing all of these masks are pushing my teeth around and causing them to hurt at times and right now, I have an area by 3 teeth that really hurts.)

So, I put my mask on and go to bed. I could feel pain durng the 4 hours I slept and I woke up feeling awful. I stayed up about an hour and then went back to sleep. But my mask was driving me crazy. How can a mask be so great one night and so awful the second? I started feeing claustrophobic and I don't get claustrophobic). I just couldn't get comfortable. Finally I took a 1/2 ng tab of Lorazespam (sp) and was able to fall asleep I woke up this morning and the strap on one side of my mask had come loose. These straps leave a lot to be desired.

But the bottom line is that my numbers were up. The first night with this mask my AHI was 4.76 w/OA at 2.60. Last nights episodes left me with an AHI of 11.76 and OA of 6.80. When I finally woke up around 7am I took the mask off and shut down the machines. Then I went back into bed to watch my morning news and next thing I knew it was 10am, I had fallen asleep. I was so tired and thought about hooking up my stuff again and then I find myself walking up at 1pm. So, I was exhausted. I don't feel horrible today, but have no energy and have done nothing. Also, I have had no desire to eat anything which is highly unusual.

I will strap up tonight as usual but I am very disaapointed again. And it's not just a mask issue, it's the pain issues. I want this to work. I want my life back. And I want a quality of life that issomewhat decent. I am trying to go back to work and tomorrow have to take a 3 hour test to qualify for a job at the unemployment office. It's not about the job skills needed for the job, but ones ability to do math, read, comprehend. (The job I know frontwards and backwards because I have done it before). But that means I have to be sharp and have my mind working. I think I have a good chance at this job and I really really need it. This job would be the difference of me living in poverty (as I have been) or living a half way decent life, able to pay my bills, get my washer and dryer fixed and go out and mingle with friends once in a while.

Is there no end to this apena madness? I know if I'm not using the machine or it isn't working I will go into that narclopsey stuff and that will keep me from being able to hold down a job. I look back and wonder how I managed before BiPap. It seems like my health just came to a bubble and burst these past few years. And I seem worse rather than better since I started this five months ago. I hope tomorrow is better.

I feel for all of you that are struggling and wonder why in the heck we have to struggle so much to get well when we actually want to get well.

[Guest]

You've been at this for two nights, and you asking if there is "no end to this apnea madness?" Get a grip. Two nights. Sheesh. It took me almost three YEARS to get to the point where therapy was working well for me. THREE YEARS.

You may or may not have a long road ahead of you, but you need to adjust your perspective. Have some patience. A few people have no trouble adjusting, but most patients seem to have quite a journey getting used to this. Don't expect overnight miracles. If you get one, rejoice! But stop expecting that, and stop feeling like you've already spent an eternity working out the kinks in therapy. You are just getting started. If you expect this process to take a couple of months (or even a couple of years), you won't be so disappointed each time you have a set back.

[macewa]

For the record I've been at more than 2 nights and have had a number of road blocks. I don't expect miracles. My perspective has been above average if you ask me. I am very frustrated and certainly don't need a mommy or daddy lecture from you. Thanks so much for your compassion and understanding.

You've been at this for two nights, and you asking if there is "no end to this apnea madness?" Get a grip. Two nights. Sheesh. It took me almost three YEARS to get to the point where therapy was working well for me. THREE YEARS.

You may or may not have a long road ahead of you, but you need to adjust your perspective. Have some patience. A few people have no trouble adjusting, but most patients seem to have quite a journey getting used to this. Don't expect overnight miracles. If you get one, rejoice! But stop expecting that, and stop feeling like you've already spent an eternity working out the kinks in therapy. You are just getting started. If you expect this process to take a couple of months (or even a couple of years), you won't be so disappointed each time you have a set back.

[idamtnboy]

You've been at this for two nights, and you asking if there is "no end to this apnea madness?" Get a grip. Two nights.

I think she's referring to second night with a new mask. She joined Jan 7 so I believe she's been at for a couple of months already.

[Newbie Woman]

I feel for you. I know it must be especially frustrating to want to be sharp for the test and unable to have a good night's rest. Hang in there.

[macewa]

Yes, I was referring to my second night on the new mask. I started all of this in July 2011. It took until Sept. 2011 to get my machine. I almost lost my machine because one of the doctors wouldn't hear what I was telling him, as I had a serious problem. It was my DME that helped me out so that I didn't lose my machine. Since that time I'm on my 4th doctor. I've also lost a job because that doctor wouldn't listen to me and things weren't working right causing me to go into a form of narclopsey and I couldn't stay awake at the new job. I've just had surgery for my deciated septum and a turbinate reduction. All in hopes that it would help in some way. So, I feel my attitude has been good, and that I'm doing what I need to be doing. I am frustrated and have absolutely no one to talk to about this except the folks on this board. I try not to post my problems and try to just ask questions. I guess I should just keep my freaking mouth shut.

You've been at this for two nights, and you asking if there is "no end to this apnea madness?" Get a grip. Two nights.

I think she's referring to second night with a new mask. She joined Jan 7 so I believe she's been at for a couple of months already.

[macewa]

Thank you, I really appreciate that.

I feel for you. I know it must be especially frustrating to want to be sharp for the test and unable to have a good night's rest. Hang in there.

[MaxDarkside]

I guess I should just keep my freaking mouth shut.

No worries. Feel free to open your mouth (unless you are using a nasal mask, then... hahaha...) This is what this board is for as I see it. There's so many helpful people here with great experience. I can help only by giving encouragement. Many of us share your frustrations.

[macewa]

Thanks MaxDarkside (love the name)

I am hopeful that tonight will be better. I was so busy trying to get things straighten out with my doctors, etc that I didn't find this group until February of this year. It has been a lifeline for me and I have learned so much here.

I guess I should just keep my freaking mouth shut.

No worries. Feel free to open your mouth (unless you are using a nasal mask, then... hahaha...) This is what this board is for as I see it. There's so many helpful people here with great experience. I can help only by giving encouragement. Many of us share your frustrations.

[idamtnboy]

I will strap up tonight as usual but I am very disaapointed again. And it's not just a mask issue, it's the pain issues. I want this to work. I want my life back. And I want a quality of life that issomewhat decent.

Your tenacity is commendable. I just looked at the info about the mask at cpap.com. Rather interesting design. Could this be a case, kind of like with nasal pillows, where too tight is worse than too loose? Are you by chance cinching the mask down tighter than optimum? If so, that may be causing some of the pain. Just asking since I don't use a FFM and so don't know first hand.

[robysue]

macewa,

I sure hope that you're in bed and having a much better night than last night. I just want you to know that I sympathize with your months long battle to get this crazy therapy to work for you. You've had the tenacity and courage to stick with it so far. I know that you've hit yet another rough spot, but I think you'll find a way to keep muddling through until the pieces all fit together.

Like idamtnboy suggests, I think that you should revisit the issue of making sure that you are fitting the FitLife Total Face mask correctly.

And maybe you just overdid after that first GOOD night with the FitLife: I know that whenever I overdo and try to go to bed early, I tend to wind up having a multitude of problems pop up---some of which I thought I'd conquered long ago. So perhaps the problem on the second night was indeed pain, and the new sensory stimuli from the FitLife, and the problems with the dry, cracked lips all conspiring together to make things miserable.

It may help you to focus on the good days rather than the bad ones. A sleep journal of some sort might help. But make sure that the focus is on measuring both how you feel and what the data says. The data are inputs, not outputs. The one and only output that matters is how you feel. You want to track the inputs to find out which are the most critical for you to manage in order for you to feel at your best.

[macewa]

Thanks. I will check how tight I'm pulling the straps, but I don't think I'm pulling too tight This mask is the most comfortable one I've had. But i do notice my head feels bruised, so maybe they were too tight. It doesn't take much for my head to feel bruised. I can't wear barretts or have my hair pulled back in a pony tail or anything like that because it gives me headaches. The straps on this mask are different and they hook in a certain way and I don't think I've gotten the habit of it. I'll think they're shut and maybe they aren't.

I'm getting ready to go to bed now. I got up so late . . no way I could go to sleep earlier. We will see. Tomorrow is another day and tonight is another night . . I hope for the best.

I will strap up tonight as usual but I am very disaapointed again. And it's not just a mask issue, it's the pain issues. I want this to work. I want my life back. And I want a quality of life that issomewhat decent.

Your tenacity is commendable. I just looked at the info about the mask at cpap.com. Rather interesting design. Could this be a case, kind of like with nasal pillows, where too tight is worse than too loose? Are you by chance cinching the mask down tighter than optimum? If so, that may be causing some of the pain. Just asking since I don't use a FFM and so don't know first hand.

[macewa]

Getting ready to go to bed. Woke up so late today that going to sleep earlier just wasn't gong to happen. But I'm hopeful. I try to be hopeful every night. I am so concerned about having to do that 3 hr test tomorrow afternoon and cannot afford to fall into that narclopsey stuff.

I have actually made a binder where I keep info on my progress or lack of. It helps me see that sometimes I'm doing better than I think. At least I'm not dreading go to bed as I was with the other masks, pain and pressures.

When I read about the trials of others and what they have to go through, and the problems they have with doctors and DMEs -- that just shouldn't be you know? This is difficult enough and to have to fight these people who are supposed to be helping is just ridiculous. I am lucky that the gal at my DME is wonderful and I think now I have found the doctor to work with me. So, in someways, I'm ahead of a lot of others and am grateful for that. I feel for all that are struggling and wonder why in the heck we have to struggle so much to get well when we actually want to get well. People who don't have this problem, don't have a clue. Even my best friend, I get so frustrated trying to explain to her what this entails because try as she will, she just doesn't get it. And that is why this forum is so important to me.

Thanks for your comments. Truly appreciated.

macewa,

I sure hope that you're in bed and having a much better night than last night. I just want you to know that I sympathize with your months long battle to get this crazy therapy to work for you. You've had the tenacity and courage to stick with it so far. I know that you've hit yet another rough spot, but I think you'll find a way to keep muddling through until the pieces all fit together.

Like idamtnboy suggests, I think that you should revisit the issue of making sure that you are fitting the FitLife Total Face mask correctly.

And maybe you just overdid after that first GOOD night with the FitLife: I know that whenever I overdo and try to go to bed early, I tend to wind up having a multitude of problems pop up---some of which I thought I'd conquered long ago. So perhaps the problem on the second night was indeed pain, and the new sensory stimuli from the FitLife, and the problems with the dry, cracked lips all conspiring together to make things miserable.

It may help you to focus on the good days rather than the bad ones. A sleep journal of some sort might help. But make sure that the focus is on measuring both how you feel and what the data says. The data are inputs, not outputs. The one and only output that matters is how you feel. You want to track the inputs to find out which are the most critical for you to manage in order for you to feel at your best.

[Newbie Woman]

I know everyone here understands apnea. It's almost like hanging out with people you've known for thirty years. You don't have to explain the history of what's going on with you because they already know it. I don't know one single woman in my "real" life who has apnea.

So how did the test go?

[hades161]

We all have fought with DME's, Doctors, Masks, Machines, Brain Fog, and the sheer pissed off frustration of it all when all your friends and family are as about as understanding as a brick upside the head. Vent if you need too, never keep your mouth shut but always ask for help and seek to fix the issues one by one. You WILL make it !

I can relate to your friend btw, my brother was all about OSA being a Fad Medical "desease" caused by being fat lazy and weak willed. That was until his heart problems started flaring up and the Doc made him do a Sleep study and guess who is on the hose now ? Hey Bro ! guess it's not a fake thing made up by Doctors now is it !??? Man you don't look fat ! What gives? Ok Ok /evil off

Keep up the good fight and your doing great just keep truckin =)