struggling with sleep-therapy and depression

[UARS-girl]

Hello all, I used to post here a lot, but I sort of drifted away as I got used to therapy. I have been on APAP for almost two years for UARS.

This summer I was feeling really well and when I went camping with my sons for 2 weeks I didn't bring my pap. (Not as dumb as it sounds, I don't have oxygen de-saturations, just arousals.) I seemed to do fine so later in the summer I didn't bring my pap on a 10 day trip, and then I was involved in a study and the study masks didn't fit as well... etc. Now it's cold and my husband won't let me turn on the heat and the rain out is killing me. What with one thing and another I have used apap very sporadically and I am so tired, irritable, anxious, etc. I am a wreck. I was so upset by a dumb spiteful comment one of my co-workers made I had to leave work.

I guess my post is mostly a cautionary tale, but I also am posting to ask for encouragement and support. My doctor wrote me a note to stay home for a week and I am trying to get 100 % compliant again and kick my coffee habit and take supplements and work-out in the hopes that I can get back on track. Medications aren't an option for me, but if you have other advice I could sure use it.

[Paul56]

There is always hope, so approach your situation one day at a time... one challenge at a time.

I know depression... had a serious issue with it over 10 years ago. I took an active role in my recovery and have been fine since. Just recently diagnosed with apnea and also taking an active role with this too.

My suggestions...

-Get back to basics: Good nutrition, time for recreation & relaxation, good sleep (start using the machine every night and check your results)

-Take it one step at a time... even chunks as small as one hour if need be. Don't look back to the past & don't look too far into the future... instead focus on the moment and the day.

-Think negatively? If so, get yourself a counter and flip it by one each time you catch yourself doing so... check the count at the end of the day. The count will be surprising. Promise yourself to lower the count the next day.

-Keep busy with little idle time.

The best of luck to you with your journey. There is always hope so keep the faith!

[UARS-girl]

Thanks Paul.

I am so tearful today even your nice post made me cry. What a wreck.

[carbonman]

. What with one thing and another I have used apap very sporadically and I am so tired, irritable, anxious, etc. I am a wreck.

Thanks! for this post. I got the message.
I will remember the message.


I guess my post is mostly a cautionary tale, but I also am posting to ask for encouragement and support. My doctor wrote me a note to stay home for a week and I am trying to get 100 % compliant again and kick my coffee habit and take supplements and work-out in the hopes that I can get back on track. Medications aren't an option for me, but if you have other advice I could sure use it.

Just do something.

Actions kill fears.

It's a journey, all the best.

[-SWS]

UARS-girl, hang in there! Sleep disordered breathing is a tough ride at times. So many of us know this first hand. Carbonman's advice about just doing something is probably good advice. It kind of fits nicely with this general principle: "If something doesn't work well, then try something else." Trial and error. When you think about it, that's really the hallmark of what has made so many CPAP users on this and other message boards highly successful.

What to try next as a UARS patient? Perhaps BiLevel. Perhaps BiLevel with BiFlex. One of our former posters, Dr. Barry Krakow (author, sleep clinic owner, and researcher), recommends BiLevel for UARS patients. Specifically he claims that UARS patients need a high enough IPAP to round the inspiratory curve and a low enough EPAP to round the expiratory curve. He feels that APAP is quite often not the best modality for UARS.

Another one of our users, Mellabella, is also a UARS patient. She has tried both CPAP and BiLevel. On CPAP she and her doctor found that her initial titrated pressure left too many residual flow limitations (not a good thing for most UARS patients). So her next sleep study was specifically for the purpose of titrating away all those residual flow limitations. She required a higher CPAP pressure to accomplish that, but slept and felt much better as a result. Mellabella is now trialing BiLevel. Last I heard she found that the BiFlex feature seemed highly beneficial for her overall comfort and UARS efficacy. I PM'ed her. I'm hoping she will weigh in here and share her UARS thoughts and experiences.

Indeed, try something else to achieve improvement. Hope and positive attitude are intrinsically therapeutic. Good luck and always try to keep that chin high ...always try for that ...always!!

[marshaeb]

Hi, UARS-girl.

Sounds like you're already doing good things and making smart choices for yourself. Like posting here to discuss what's going on with those who truly understand and completely empathize. We do. Smart move. Keep posting. Frequently. Here, PMs, whatever works.

Leaving work when you knew you were too upset by your coworker's attack (what else would you call a dumb, spiteful comment?) was a good move. By the way you worded it, leaving work isn't something you usually do, so it doesn't sound like you're one to use excuses as a crutch. You recognized the reality of the situation (too upset) and took smart action (left work). That was a move of taking care of yourself, not weakness or retreat.

Allowing yourself to take a week off also was a good thing. It'll give you time to find your balance and for your system to begin readjusting.

I'm well-acquainted with depression, also. Went through it myself a number of years ago and have had some people close to me with it, too. Just a few thoughts offered....

Drink at least two quarts of water a day.

Take a good multivitamin, as well as a Super-B Complex pill, each day. Naturals are best.

I understand you can't take meds. How about herbal supplements? This seems to be a good, balanced article, complete with cautions about when certain ones shouldn't be taken: http://altmedicine.about.com/od/healthc ... ssion1.htm

If you're able, take a walk every day. If not, at least get outside for some time every day and, if possible, use full-spectrum lighting inside.

Listen to upbeat music.

Don't expect that finding your way back will be easy.

Don't expect it to be impossible, either.

Attack it, and be ready to work.

Expect setbacks and plan ahead for handling them.

Consider at least a few appointments with a good counselor, if you're open to the idea.

Find things to do for others. For example, you're off for a week. Got plans? Maybe you could use some of it here and help some of the newbies with their questions. You don't need to do everything perfectly before you can offer suggestions. (Good thing, huh? NO ONE would be talking. )

During my depression days and even now when I'm low (we all get that way from time to time, as I know you know) repeating this to myself helped/helps:

The measure of success lies in getting up only one more time than you've fallen. Only one more time... you can do that.

So you knew what to do, and you stopped doing it. Yes, you blew it. We all do. Some of us, spectacularly. (Yes, I'm definitely talking from personal experience. When I do something, I do it WELL. ) Don't beat yourself up for it. Yes, you could have made better choices. Welcome to the club. I'm not being sarcastic; just reminding you that we humans only do one thing perfectly -- make mistakes and poor choices -- and that you're in good company. Us.

I learned long ago that humor can be a mighty weapon.

For example, there were times when a thought would get to me when I was around others, and tears would escape. And the longer I felt embarrassed about being seen crying, of course, the more I couldn't stop. Until I had this thought.... thank goodness our design didn't involve our being given neon-electric-green tears! They're clear. Invisible. And most people (like me.... sigh) are too self-absorbed to really look at my face when I'm out in public anyway. I'm not really the center of attention that I think I am. That thought helps me chuckle a little at myself, calm down, take a breath and keep going.

Another example: I kept in close touch with a friend who had a horrible situation to deal with during my depression years. We leaned on each other. Hard. Often. On a particularly tough day for both of us, we were commiserating on the phone. Suddenly, she started to laugh. Wondering if I should put her on hold and call 911, I cautiously asked why she was laughing. "I just realized something... salt is a preservative!!!" As my finger hovered over the Hold button, I asked, "Uh.... should I be calling 911 for you?" "No, really!!" she said, "Salt is a preservative!! As much crying as we're doing, we'll NEVER get wrinkles!!!" And then I lost it and joined in her hysterical laughter. And then it was a little better. (And -- absolutely true story -- people usually guess that I'm ten years younger than I am. Honest. )

Hang in there, UARS-girl. We're here for you. It WILL get better.

Marsha

[UARS-girl]

Thank you all for your kind words and excellent advice. I am writing a plan for this week off, and I am going to do all of the things you suggested.

My husband turned on the heat! (Okay, that sounds a lot lamer than it really is, I of course could have also turned on the heat, but we are in a big push to save money and improve finances and we had agreed to try a cooler temp and later start to the heating season...) Comfort before money though, it's amazing how much easier it is to cope when my fingers and nose aren't numb.

One hour at a time. Check.

[Hawthorne]

I was about ready to say something to you about your husband "not allowing you to turn on the heat". I was thinking to myself that your relationship with your husband may be a factor in your situation. I was going to go on about - if you needed it warmer to sleep better you should be telling him you had to do that and just doing that.

I'm very glad you clarified and told us that, not turning on the heat yet to help with the finances was a mutual decision!

You will get back on track soon! Coming back to this forum was a good decision! We're pulling for you!

[UARS-girl]

Sorry, I was feeling so sorry for myself when I first posted I phrased the heat thing wrong.

Even with the heat on I had terrible rain-out last night. I can't figure it out, my wool hose-cozy worked great last year. Maybe the house was still cold or we just haven't turned the heat up as high as last year. I am going to try a thick polar fleece blanket tonight. I woke up with rain drops falling on my nose and a horrible burbling sound in the air outlet from watter drops. Part of my problem is clearly bad sleep and the high cortisol levels that causes, I am irritable and jittery and weepy.

Has anyone had any luck covering the actual mask? I don't want to trap Co2 in, but could that be part of the condensation? Or would my face and breath keep that warm enough?

Thanks again for the support. I have also been reading the thread by the Finnish man and I resonated so much with his tales of work struggles. That is my biggest worry right now, that I am so emotionally reactive that I will dammage my career. That's why I asked for a week off work.

[ozij]

I wrapped up the nasal seal part of my Headrest to keep it from collecting water. That's easy, since the vent holes are far away (relatively...) from that part of the mask.

Try dropping the huimidifier temprature a bit - the extra humidity condensing in your mask is not helping you. I think you're right about the cold temprature in the room causing more rainout.

O.

[UARS-girl]

Well, the polar fleece blanket was better, but I still had burbling bubbles that woke me up and I couldn't get back to sleep. I just read in another thread that the M-series humidifier is way warmer/wetter than others, so I will turn it as low as it goes, I really suffer from dry sinuses, but maybe if I got some saline spray?

I love my cpap in the summer, I don't notice the sounds because our window fan covers them, there's no rain-out, I can crank the humidity all the way up and the air is moister anyway so I don't dry out. There are fewer blankets to struggle with and no hose-cosy. Winter is a drag.

It feels strange to be home from work. But since I have burst into tears several times already today I think it's the right choice. Hardly professional to have to leave the room every few minutes to go cry.

[-SWS]

I just read in another thread that the M-series humidifier is way warmer/wetter than others, so I will turn it as low as it goes, I really suffer from dry sinuses, but maybe if I got some saline spray?

I would try turning the M-Series humidifier down to a setting of 1. There's also a less evaporative saline gel that some people swab on the inside of their nasal passages. Some but not all pharmacies or drug stores stock tubes of saline gel.

Alternately Vaseline can work in very small amounts if carefully applied. Any Vaseline that happens to make its way to the lungs will not be resolved. A gradual accumulation and even lipid pneumonia is a possibility if petroleum-based Vaseline is carelessly applied. Saline gel is safer since it does not pose that slight risk of lipid pneumonia.

It feels strange to be home from work. But since I have burst into tears several times already today I think it's the right choice. Hardly professional to have to leave the room every few minutes to go cry.

Well, that's part of depression. Take solace in knowing that virtually all of us have been there. I was telling a good friend in a PM that in my opinion we can all be divided into these two types: 1) those who recognize and admit depression when they experience it, and 2) those who do not.

If possible see if you can at least occasionally put aside any strangeness or guilt about being at home. If possible, place the depression aside long enough to fit exactly one pleasurable or gratifying activity in---no matter how hard that may seem. If the subconscious still needs more crying time---more emotional healing time---you can still make plenty of time for that as well. But try to pick an activity that is pleasurable and gratifying, and see if you can manage to fit that activity in. If that works, then try to fit one or more pleasurable or gratifying activities in tomorrow---preferably more than one. The idea is to methodically work at improving your mood---and hard work it may very well be... But well worth it!

Don't forget that the simple passage of time can heal. Also, don't lose sight of the fact that effective CPAP therapy tends to also heal the psyche as it slowly heals the body.

P.S. Don't forget to somehow try to fit in a "non depressed" activity today since you deserve it.

[-SWS]

Well, the polar fleece blanket was better, but I still had burbling bubbles that woke me up and I couldn't get back to sleep. I just read in another thread that the M-series humidifier is way warmer/wetter than others, so I will turn it as low as it goes, I really suffer from dry sinuses, but maybe if I got some saline spray?

I love my cpap in the summer, I don't notice the sounds because our window fan covers them, there's no rain-out, I can crank the humidity all the way up and the air is moister anyway so I don't dry out. There are fewer blankets to struggle with and no hose-cosy. Winter is a drag.

I just had a dollars-and-cents thought about this rainout problem. I agree with cutting the heat back to save on finances and even help the ecology.

But this is the week that you're supposed to be relearning how to comfortably use CPAP. It's also the week that you truly need CPAP to start gradually healing those effects of chronic UARS-related sleep deprivation. Hey! Those two objectives are very important! Why not get with hubby and see what the estimated out-of-pocket difference is for you to sleep at room temperature this week and maybe next. I'm thinking that added cost is going to be less than the cost of many medicines. Once you re-acclimate to CPAP and your body is well on the way toward healing (after the prolonged effects of sleep deprivation), THEN you can very wisely turn that thermostat down at night.

But if those darn temperatures are preventing you from accomplishing this week's CPAP objectives, I'm thinking a week's worth of heating money saved at night is not wisely saved money.

[ozij]

Great thinking, -SWS!
O.

[rested gal]

UARS=girl, rain-out can sure be a major aggravation and "waker-upper.'

If the bedroom must be cold and if wrapping the air hose doesn't do the trick, you might want to look into ways to keep that cold plastic hose warmer:

LINKS to discussions about the Aussie heated hose - to prevent rainout
viewtopic.php?t=5305

The "Repti-heat cable" mentioned in some of the topics at that link is probably the least expensive way to add warmth along the length of the main air hose. Beyond that, make sure every piece of exposed plastic to (and around) the mask is covered with fleece or some kind of material.