So depressed...

MoonBear, where are you in the process? Have you have a sleep study yet? Have you gone back to your sleep doctor to discuss the results? Do you have a prescription for a CPAP machine in your hand? You can get through this one step at a time, but to give you specific help and advice it is best if we known exactly where you are in the process.

Aw, MoonBear. I think that many of us have been exactly where you are right now. Job number one for you is just refusing to give up. Ask yourself as you go along- do you feel that you are titrated to the correct pressure? Make sure you get the autopap with data capabilities! How do you feel about the mask you are in and the doctor and/or DME you are seeing? If you don't think your mask or caretakers are right for you, chip away at finding ones you can even remotely tolerate. That will go such a long way for helping you to gain confidence.

It can be overwhelming to read here at first because there is so much to learn. Don't stop reading here if you're overwhelmed. Eventually you will be able to read with less anxiety and your ability to make decisions about treatment will improve. If you need to, talk to your doctor about something to help you with the insomnia while you adjust. I wish I'd considered doing that while I adjusted to mask claustrophobia. Feelings like those and full-on depression are very common outgrowths of sleep deprivation. Do not lose hope. It gets easier. It really does. (((MoonBear)))

MoonBear,

Your post brings tears to my eyes - I can almost feel your sadness, fear, anxiety, and frustration. Just wondering if you've talked to your physician about your feelings. Sounds to me like you may have some anxiety and depression issues that may be helped with meds. If you don't want to go that route perhaps learning some relaxation or meditation techniques will help. I get regular massages for relaxation and find that the time I spend being pampered allows me time to relax and turn off my brain for a bit. At least one response talked about the aromatherapy with CPAP. I use it and really like it. I use a nasal pillow mask and find the first 30 - 60 minutes with a new pillow I can smell the plastic-like smell. After that I don't notice it. Besides the aromatherapy products from pure sleep I've also used real vanilla extract on a cotton pad or Vicks Vapor Rub (I put a little dab on a piece of aluminum foil near the air intake area on my CPAP machine).

If you're not a mouth breather you can use a nasal pillow mask which are much smaller and perhaps easier to use than a full face or nasal mask. I like the Swift FX or Swift FX for Her. They're really the same mask with different size range of pillows and differences in color (which of course is not important from a therapy standpoint).

If you have issues that are more vanity focused, take a look at the people posting on the forum. There are men and women, young and less-young . I will admit I thought of sleep apnea and CPAP as an old man's issue and was stunned when I went for my sleep study that all of the other patients checking in appeared to be around my age (48) and there were more women then men. Go figure!

And the most important thing. . .CPAP therapy is life saving. I was stunned when I learned about the relationship between sleep apnea and other serious illnesses/diseases.

You've done the right thing and reached out for help and support. You may also want to look at see if there is a support group in your area.

Hang in there.

cflame1 wrote:And don't let the asthma stop you... I've got it as well, and the thing that helps me the most... is to just breathe the air from my machine.

Hi,

Dittos. Asthma, and my struggles to not let it stop me, have defined my life. Funny thing...my asthma is dramatically improved since I started CPAP 2 years ago. I did things today that I would have found impossible to believe 5 years ago. Of course, I am going to pay for that tomorrow by being stiff and sore, but hey, you only get to live this life once. Gotta make the most of it while I still can.

-john-

I am extremely grateful for every encouraging word, all the compassion and the stellar counsel I received in response to my post. I will apply all the kind counsel, and the smart advice. It was hard to be so revelatory when i am used to NOT sharing when I feel like I do need to vent. I do not know why this issue lights me up so much, but imagine that will ease out or I will learn more as I go through it. I have learned that a sleep study instead of a little home test would be very valuable. And starnge as it seems, with my insomnia, when i am up unto 3,4, or 5 in the morning, I see no reason why i can have the cpap on then. Desensitization might help. So thank you to all of you kind and smart folks who took time to listen and respond. I am very grateful. Namaste, MoonBear

Awwwww we all wish you peaceful dreams and everything good to help you regain your health. Sweet dreams!

Good Morning, Moonbear --

I just saw this post and wanted to give you some encouragement. I know exactly how you feel and so much of what you said I can personally relate to.

My situation is a bit different as I don't have basic sleep apnea, although I do believe sleep apnea is a contributing factor. I have a serious neuromuscular disease which has compromised my diaphragm muscles making it difficult to breathe when laying down.

Up until early 2008, the neuromuscular disease was a royal pain the butt, but otherwise I was doing okay. But since then, it seems as though my health has taken a nosedive in a monumental way. I was sick and hospitalized, then it just seemed like I stayed sick in different ways and had so many problems. My neuromuscular disease was causing me more serious issues, then BAM -- breathing troubles.

I had told my husband that I knew breathing issues COULD become a factor and there was no way I would use any machines to keep me breathing. I told him FLAT OUT that if it came to that, he was to just let me die because I was not going to do it. Within a year, I started having those damned breathing problems I had mentioned. My husband -- this big strong man -- started crying because he was terrified that I wouldn't seek treatment and help. I felt bad so I agreed to see the specialist, but that was it -- I would NOT use any machinery. But when they recommended a sleep study and were talking about doing a cpap machine, I thought about it a bit. Plus, my husband begged me to please do what I needed to do because he loved me and needed me -- plus we have two children.

And I relented and started out on cpap. I had depression and anger over this stupid thing being strapped to my face. I also had about 3 nights of pure Hell because I had a nasal mask which I would not adapt to. I was pissed, angry and depressed. But I was also honest and realized that despite how much I hated it, there was something about it that WAS helping. Once I got a full face mask, things got a lot better. I actually found the air comforting and started getting excited around 7pm when I knew it wouldn't be long before I could get strapped up and get that air.

And for me, I quickly moved from cpap to a ventilator -- a VENTILATOR!!! Are you kidding me??? Actually, no. The thing I was adamant about not doing, told my husband there was no way possible -- is now an integral part of my life. It's saved my life.

And it's not that bad. Believe me, I understand your feelings completely. Been there, done that. I know what it's like to be sick so much, feel so bad, then get socked with this breathing issue and be told I needed a machine. Blech.

This forum is a fabulous place to get information (I think the people here helped save my life), support and a shoulder to cry on when you need it.

We're here for you and will help you through this journey. Please don't give up. You CAN do this. If *I* can get to the point where I am, anybody can do it.

MoonBear - I first thought like you - no way I would be able to sleep, sensitive skin, asthma, claustrophobia... But I felt so crappy so I thought I would try it for 2 hours ----- moments later it was 6:30 am and no headache, all the colours seemed brighter, clearer. The only thing was my skin hurt and my hips ached. Info on this board solved that in no time.

1- Pick a friend or your husband - let them read the Wiki and take them to the DME as your "patient advocate" - You are sleep deprived and have memory problems right now - let them do the screaming if required, let them read the fine print, let them make notes of how to use the machine and make sure it is data capable.

2- Data capable machine - as in "seeing your leaks and AHI" diabetics manage their health the same way.

3- try the mask on under full power laying down at the DME.

4- wash mask well, use a liner made from well washed knit fabric - I made mine from an old pair of cotton panties.

5- Use a hose cover made from tube socks from the dollar store (cut toes off)

6- Get a good pillow - sleep on the edge of the pillow with the mask hanging over the side.

7- A mattress pad will be a good thing. For the first time in years you will not be moving in your sleep - your joints might ache.

8- Remember that your wonderful sleeping brain has been keeping you alive for years by waking you up, show gratitude and accept that it might take a few weeks for it to accept that you are now safe to sleep deeply. In some ways - just let your exhaustion take over and get out of the way.

Print this list and give to your husband / friend.

MoonBear,

You wrote:

And starnge as it seems, with my insomnia, when i am up unto 3,4, or 5 in the morning, I see no reason why i can have the cpap on then.

I say this as a fellow insomniac: If you're not already practicing good sleep hygiene practices to try to manage the insomnia, you need to start now.

I found that when I first tried to wear my CPAP at night, I'd toss and turn for several hours looking for the "perfect" position in order to get to sleep. Of course, the very process of trying to find that position along with getting everything hooked up just right and so on, was waking me up instead of helping me sleep.

So, yes, you should try some desensititizing techniques to simply get used to wearing the mask. The only desensititzing technique that I've found useful is to spend about 15-30 minutes dozing with the mask on in the morning after I wake up and before I want to get out of bed.

But desensitizing yourself to the mask is only one problem you need to be working on to make CPAP work. You also need to work on attacking the insomnia itself. As an insomniac, I have found the following things to be helpful in preventing me from lying in bed several hours with the CPAP on, but not sleeping:

1) Get everything CPAP related ready well before bedtime: Wash your mask/pillows etc. in the morning right after you get up. Assemble the mask (if needed) and get the humidifier set up well before you are even thinking about bedtime. In addition to simply getting used to having the mask on and the air blowing, it's also important that you prevent your brain from associating Put on CPAP mask with Time to wake up and worry about things.

2) Wash your face at least an hour before you go to bed. Washing my face wakes me up. Also it may help to get a better seal and create fewer skin problems if you don't have any residual dampness on your face before putting on the mask.

3) Move any TVs, computers, books, etc. out of the bedroom. You need to train your brain to associate being in bed with being asleep instead of being awake and worrying. More about this in items 4--6.

4) Take a conscious hour-long break from doing anything that tends to wake you up or make you worry before you want to go to bed. Don't simply go back and lie down in the bed, however, since lying in bed without sleeping makes the brain associate being in the bed with being awake. For me, this means NO tv, NO reading, and NO internet browsing within an hour of when I want to go to bed. Spend that last hour doing something that will help you focus on getting sleepy (not merely tired) and relaxed enough to fall asleep when you do go back to the bedroom.

5) Go to bed when you feel sleepy, which is different than when you feel tired or exhausted. If you find yourself unable to fall asleep, you probably should get up (so the CPAP mask can legitimately come off) and do something in a different room until you are sleepy. Make sure whatever you're doing is NOT making your brain wake up. Do NOT look at the clock while you're puttering about. Don't try to read or watch tv or web browse while trying to get sleepy. Those activities are more likely to wake you up than make you sleepy. Do something you find relaxing that does not involve too much thinking. For me, I find that I need to do about 30-60 minutes of deep breathing and light yoga before I put the mask on and go to bed. Otherwise I have trouble getting comfortable and then my brain wakes up and I toss and turn.

6) Avoid looking at the clock when you're in bed. If you find that hard, try moving the clock to the other side of the bed and even turning it away from your face. Watching the clock will only aggrievate the insomnia. If you find yourself tossing and turning and repeatedly looking at the clock and worrying about how late it's getting and how little sleep you seem to be getting, then it's time to get up out of bed no matter how tired you are because your brain is clearly not relaxed enough to feel sleepy. Once you decide to get up, go to a different room and do something that will help make you sleepy. A cup of warm milk or a cup of caffeine-free herbal tea might help you relax and feel sleepy.

7) If at all possible in the short term, try not to worry too much about maintaining a "normal" looking schedule. If you're not sleepy until 3 or 4 in the morning, don't go to bed at midnight or 1:00 even if you're tired. Once you get asleep, sleep until you naturally wake up if at all possible. Once you're sleeping with the CPAP on for several hours at a time, then you can work on moving bedtime and wake up time back to more reasonable hours.

Yes it sounds like a lot of work. Like CPAP, managing insomnia is a process and you'll have better and worse nights, particularly at the beginning. Focus on baby steps of progress. But trying to get the insomnia under control will simultaneously help you get the CPAP adjustment made. Celebrate every tiny bit of forward progress you make and don't fret too much about bits of backsliding. Good luck!