Ready to Give up! Can't sleep! Feel worse!

Sorry, long post! I don't want to be whiny! I am just so frustrated and TIRED! I think I am so sleep deprived I am losing my mind. Yesterday I lost a paper at work and looked everywhere for it. I went to the person I was supposed to take it to and she said I had already brought it it and left it on her desk a little while before that!!! WHAT!! I have almost completely lost my short term memory. There have been other instances where I can't remember if I told someone something and I tell them again. YIKES!! I also am irritable, achy, feel like I am sick, and I am losing interest in life!! This has all happened since starting CPAP. Before I was at least sleeping some now I am getting so little sleep I am dreading trying to go to bed. With apnea I just roused up now I wake up fully constantly. I am on my 3rd mask, I feel them on my face, they hiss and make noise when I move, they leak constantly, I feel like someone is trying to suffocate me, I get claustrophobic and panic. I have worn the torture device even though it is a battle. My compliance is 89%. I just don't sleep even as much as I did before!

I have been very active in trying to "fix" this. I have posted on here and tried as many of the suggestions as possible. I am trying my 3rd mask (I hate them all and can't sleep). I have been back to my doctor, changed pressure, changed humidity, got rid of water in my tubing (tube cover), and tried all the suggestions to help with the masks. I drink no caffienne, I try not to sleep without the cpap because I want to get used to it and MAKE it work!

I need sleep so bad. I seem to only get some when I don't have cpap on. That is in short naps on the couch when I can't hold my head up!
Is there a time where you just say this doesn't work for me? If so, what is my alternative? I have another appointment with my doctor on March 17. My DME has tried to help me and been very encouraging but I live 45 minutes away. I truly don't think it is the mask it is just that I am not tolerating this well. I am very sensory and that is making it extremely difficult to adjust. I am desperate to make this work. As it is I dread facing bedtime and a night of torture!! HELP!!
Karen

ka-ann wrote:Sorry, long post! I don't want to be whiny! I am just so frustrated and TIRED! I think I am so sleep deprived I am losing my mind. Yesterday I lost a paper at work and looked everywhere for it. I went to the person I was supposed to take it to and she said I had already brought it it and left it on her desk a little while before that!!! WHAT!! I have almost completely lost my short term memory. There have been other instances where I can't remember if I told someone something and I tell them again. YIKES!! I also am irritable, achy, feel like I am sick, and I am losing interest in life!! This has all happened since starting CPAP. Before I was at least sleeping some now I am getting so little sleep I am dreading trying to go to bed. With apnea I just roused up now I wake up fully constantly. I am on my 3rd mask, I feel them on my face, they hiss and make noise when I move, they leak constantly, I feel like someone is trying to suffocate me, I get claustrophobic and panic. I have worn the torture device even though it is a battle. My compliance is 89%. I just don't sleep even as much as I did before!

I have been very active in trying to "fix" this. I have posted on here and tried as many of the suggestions as possible. I am trying my 3rd mask (I hate them all and can't sleep). I have been back to my doctor, changed pressure, changed humidity, got rid of water in my tubing (tube cover), and tried all the suggestions to help with the masks. I drink no caffienne, I try not to sleep without the cpap because I want to get used to it and MAKE it work!

I need sleep so bad. I seem to only get some when I don't have cpap on. That is in short naps on the couch when I can't hold my head up!
Is there a time where you just say this doesn't work for me? If so, what is my alternative? I have another appointment with my doctor on March 17. My DME has tried to help me and been very encouraging but I live 45 minutes away. I truly don't think it is the mask it is just that I am not tolerating this well. I am very sensory and that is making it extremely difficult to adjust. I am desperate to make this work. As it is I dread facing bedtime and a night of torture!! HELP!!
Karen

Try writing down exactly what is happening for your Dr. It is easy to forget by the time when you get there . (I know)
go through things one thing at a time.
hose cover -good

what pressure is machine set at?
what ramp is it set at?
what is humidifier set at?
hissing sound?= mask leaking =get right mask

I can understand what you're saying. I've had my machine for just eleven days, and for the first eight, felt the same as you. I read advice here and tried something new every night, with no concernable affect. I also felt I was waking more than before I started on CPAP.

When I did the titration, the tech just guessed at what size I needed, and sent me on my way. I researched here and other sites, and finally figured I had the wrong size. I got a different size, and must say, for the last two nights anyway, I am doing better. Too soon to tell, but I'm determined to make this work.

Other information

Pressure = 9 (it was 7 but the dr. changed it when I felt like I couldn't get enough air)

Ramp - not using ramp feature anymore. I feel like I am suffocating with it.

Humidifier setting = 2 (straight up - no water in hose or mask but not I'm not dried out either.)

My AHI, HI, AI and leaks were better with the Swift nasal pillows and I like them best but I got terrible headaches every day with those.

The Ultra Mirage FFM hurt my nose BAD and left a bad red bruise, it also leaked, felt like it weighed a ton, and felt like something was sucking my face off when I got it to stop leaking.

Just got the Forma. It makes me feel like I am not getting enough air, it leaks bad, it feels like it squeezes the top of my nose shut.

PAD your mask. Stick some fabric between your skin and the mask - it makes a world of difference (Just find an old t-shirt , lay the mask on it and cut around it. Hold it up , note where your nose is and cut a small hole, enlarge until it feels right.)

Change your attitude. When you go to bed say to yourself "I love my mask. I love the way it heals my body" over and over until you fall asleep
Hold your pointer finger to get the best rest as per Oriental meridians.

It is like trying to ride a horse - if you are angry or suppressing fear the animal knows and will fight you. Your sleeping mind is the same way.

Karen, I'm sorry you're having so much trouble and frustration. It is a big change to sleep with the mask and air blowing at your face.

I sense, though, that you understand how important this is, and you are strong enough to win this struggle. When you are able to just relax and sleep with cpap, things WILL improve, and you WILL feel better. Hang in there and give it some time. Try to relax and not worry about it. Stress just makes it more difficult. You can do it!

Good Luck,

Irene

Cpap Friends,
I do plan to continue this journey. I just felt so bad this AM and was so frustrated! It just gets so overwhelming and one question just leads to another. I know I will do this and maybe I will be able to help someone else. I am a person who takes action and does not let go easily. I am thinking of my plan for tonight. Jersey Girl, I am thinking about breaking it down to make it less daunting! I just need to step back and take deep breath and jump back in!

I do need to relax and find my "happy place" in the middle of all this! I will try to remember my childbirth classes from many years ago!!

For tonight, I think I try setting my EPR to 2 (saw that on here and have not tried that). I am going to go back to my Swift pillows (I slept best with those), crank up my humidity a little more and see if I can alleviate the headache problem.

If that doesn't work I will try padding one of my FFM's and make it work.
Thank you, Thank you, Thank you all for caring and for hearing the pain that goes with this! I don't know how I would do this without this site and all you!!

I don't have same machine but I know setting of 2 is much better on mine..

My DME asked me how I was doing and how many hours I kept my mask on when I first started using it. I told him it was fine and I used it whenever I was sleeping, all night every night. The key was my wife for six months before I got the mask would punch me in the back or shake my head when I was snoring. She also yelled at me and sometimes kicked me out of the bedroom due to my snoring. Compared to that, having a mask strapped on and hooked on a hose all night is a walk in the park. I'm not sure how to apply my success to you, but it could include having your significant other hurt you when you take off your mask, much more so than the feeling of having it on..... good luck to you.

Karen,
You have already got some great advice. Jersey Girl gave good advice, try to break it down and attack one issue at a time. I am only 5 months in but had a lot of issues in the beginning. I advise you to keep notes, or a journal, of changes. And try not to make a lot of changes all at once. You cannot know what caused an improvement or made things worse. I try to change one thing at a time, and give it at least a few days. You never know when you just have a bad day not related to changes or even Cpap. We all have them. One day does not a trend make. Making small changes, one at a time, makes it easy to see what helped and what hurt. Attack things you can fix first, like comfort issues, mask leaks, etc.
I went through about 12 masks in 3 months before settling on the Quattro. It is not perfect, and it leaks, but it is acceptable leaks and with comfort pad on nose is tolerable. You said you went through 3. I would try more. If possible at your DME or maybe even doctors. My sleep doctor runs the lab so I have tried 1-2 there on dr appts. But I purchased 12 to try over 3 months. You can buy them on Cpapauction.com for about 1/4 the DME prices, sometimes less, frequently new.
Last advice is wear your mask watching tv before going to bedroom. Wear it in bed if reading, but turned on in case you fall asleep. The idea is to make the mask normal, not a dreaded part of going to bed. if you wear it for 1-2 hrs, and then go to bedroom and just attach to hose, you may get used to it faster. I did that way.
Good Luck,
Don

I have been having problems adjusting to mine too and when I looked into solutions, one of the ones I found (that isn't on the above suggestions) is to put some aromatherapy through the mask. If you look up Pur-Sleep on here, you'll find lots of info and if you're in the US apparently there is a sample kit available. I'm in Canada so I was sol but here's the website http://www.pur-sleep.com/content/index.asp?id=6. Mine isn't here yet so I can't give you my personal opinion but there are raving reviews all over this forum on it!

I think the best advice I got was from a technician at one of my sleep studies. We were talking and he told me he never met a single individual that wanted cpap to work and failed to make it work. It has been a long time for me, but I do remember how tough it was getting used to it.. At first, I was up all the time, taking the mask off, putting it on, trying nose pillows, different humidity settings, at times it was really frustrating. During those times I would recall what the technician said to me and I convinced myself it was going to work and I just kept at it. On the other hand, cpap does have some undocumented advantages, like if you share the room with a dog that has a Flatulence problem, you never have to deal with it.

Everyone is different, for me and my wife, we both use the $39.00 Aclaim 2 masks from cpap.com and use "over the head", dangle like a fish on the end of line hose setup. I did not like having the hose lay aside of me, I like it out of the way. The Aclaim 2 will leak at times, especially as my face flattens out, but usually just by pulling the mask gently away from the face a tiny bit will allow the membrane to fill with air and reseat. The Aclaim 2 will also whistle some times when it leaks, I just love that at 2 AM - it's almost as much fun as rainout from having too much humidity.

ka-ann wrote:Sorry, long post! I don't want to be whiny! I am just so frustrated and TIRED! I think I am so sleep deprived I am losing my mind. Yesterday I lost a paper at work and looked everywhere for it. I went to the person I was supposed to take it to and she said I had already brought it it and left it on her desk a little while before that!!! WHAT!! I have almost completely lost my short term memory. There have been other instances where I can't remember if I told someone something and I tell them again. YIKES!! I also am irritable, achy, feel like I am sick, and I am losing interest in life!! This has all happened since starting CPAP. Before I was at least sleeping some now I am getting so little sleep I am dreading trying to go to bed. With apnea I just roused up now I wake up fully constantly. I am on my 3rd mask, I feel them on my face, they hiss and make noise when I move, they leak constantly, I feel like someone is trying to suffocate me, I get claustrophobic and panic. I have worn the torture device even though it is a battle. My compliance is 89%. I just don't sleep even as much as I did before!

I have been very active in trying to "fix" this. I have posted on here and tried as many of the suggestions as possible. I am trying my 3rd mask (I hate them all and can't sleep). I have been back to my doctor, changed pressure, changed humidity, got rid of water in my tubing (tube cover), and tried all the suggestions to help with the masks. I drink no caffienne, I try not to sleep without the cpap because I want to get used to it and MAKE it work!

I need sleep so bad. I seem to only get some when I don't have cpap on. That is in short naps on the couch when I can't hold my head up!
Is there a time where you just say this doesn't work for me? If so, what is my alternative? I have another appointment with my doctor on March 17. My DME has tried to help me and been very encouraging but I live 45 minutes away. I truly don't think it is the mask it is just that I am not tolerating this well. I am very sensory and that is making it extremely difficult to adjust. I am desperate to make this work. As it is I dread facing bedtime and a night of torture!! HELP!!
Karen

Karen,
I know all of this is so hard to get used to, and it's frustrating as heck. I just started treatment
on Feb 19 th, and have my shar of problems. I had to call cooporate to get my DME to even
work with me, or call me back.

Iwas just wondering if something for sleep might help? I take Trzadone, and it makes me sleep
so sound I hear nothing at all.

I was also wonder if this might be something that you could talk to a therapist about? This is a
real life change, and this is a wonderful place, but there maybe something else that is triggering you
about all of the equipment???

Good Luck,
Debbie

Ka-ann, I don't hear whining here--just intense frustration with the difficulties, despite your determined efforts. I sure relate to your memory loss experience, having been horrified and humiliated by the same type of events every day at work for months before I became convinced that I must have Alzheimer's and be on the road to unemployment and early death. Really. And I am no drama queen. My issues were before I was diagnosed with OSA, and I do hear you that you feel worse since starting cpap.

I am probably reiterating some of what others have suggested here, but I do want to add my observations and thoughts. Your anxiety and dread are the last feelings that you wanted to be having, but clearly feeding into your difficulties with adjusting to and carefully working on one thing at a time. The suggestions already made by Blackspinner & others about relaxing and practicing a positive attitude and thoughts toward this life-giving, memory-restoring machine...are really important! Viewing the cpap journey as a "battle" and a "torture device" can only get your adrenalin going at a time when you need to be slowing down each night to prepare to sink into the warmth of your bed and sleep.

I do believe that you are having serious mask problems, and that it is not that cpap is just "not able to work" for you. All of us are here because we needed help to tweak things and "make it work" better. You have shown admirable fortitude and perseverance in reading & posting here and taking initiative to try suggestions given. Great! Keep on with it, Ka-ann---one thing at a time, as many others have said. Slow & steady....Try hard to not give in to getting worked up with frustration. I know it sounds lame, but I found it helpful to view every night with curiosity and as an experiment. Do follow the advice to get the mask on well before bed time to get the leak issues resolved.

And if you can afford it, please do indulge yourself in some of the comfort items that you have read about here. I can't tell you how much more pleasurable the whole experience became for me when I bit the bullet and invested in things like Pur-Sleep scents, PadaCheeks, cpap pillow, etc.

Hang in there, girl!