Looking for encouragement...

[DivinMercy]

I am a CPAP user since December and new to this forum in January. I am wondering if some people would mind telling me how long it took them to get a good/full night's sleep? I am still only getting an average of 3 to 4 hours per night, and not all on the machine, necessarily. I also am battling insomnia (for about 5 years now) and depression/anxiety (for about 10 years). Medications for these conditions can play havoc with my sleep "hygiene" also.

This past year I have had to put my last 2 children back in school instead of homeschooling. I can no longer teach them, run the house and basically function, being as sleep deprived as I am. My 6 children and husband have all complained at some point or other about me always falling asleep in the afternoon and evening...SO...

I am determined to make the CPAP work, but am discouraged because I am unable to duplicate the titrating sleep study ... I felt so good after that...and I am so tired of being tired

Will I EVER get a (good) night's sleep again? How long will it take? I can wait if there is hope, but my household is falling apart, and emotionally and, physiologically, so am I. My relationships all seem to be in disarray

Please, some words of advice or encouragement would be greatly appreciated!! Sorry this was so long. Just feeling a little down and, knowing from reading many past posts how supportive this forum is, thought I would ask for some cheese with my w(h)ine i.e. please give me something to grab on to!

BTW, husband states that on my back I am still having apnea/hypopnea. HOW DO I GET AN AUTO CPAP?????? DME states insurance almost never pays for these. What kind of evidence do they require to show necessity?? Thank you all so much!!!

-Mary

[bookwrm63]

First off Mary, welcome to the forum! Secondly, with 6 kids, no wonder you are so tired! Everyone has had very different experiences with their xpap therapy. I am functioning but still have never had that "wow" feeling in the a.m. that many describe. It's enough for me though.

What would be helpful is if you would fill out your profile with equipment type and mask. That way the forum folk will find it easier to offer advice to you. It may be that your pressure is not adjusted correctly. It could be an ill-fitting mask. You don't describe what happens in the night and why you are not using the cpap.
There are plenty of people here willing to help so don't get discouraged. And tell your husband to hang in there and to try to be more supportive. This is not an overnight fix for most but you will get there!


Good luck.

Mary

[bookwrm63]

I almost forgot! Mary, at the top of the page, you can click on the Yellow Lightbulb and just start reading. There are so many topics covered that you will find useful. Also, if you are looking for something specific, just click on the SEARCH box above and enter key words separated by AND. For example, to search for advice from others with insomnia, try entering:
insomnia AND advice AND cpap. Depending on the topic, you will find lots of threads to past discussions that may help you.

[jrgood27]

Hi Mary,

You and I are in the same boat. I've been trying since September and cannot ever go more than 5 hours (with sleep meds) and haven't felt rested yet. I feel down about it a lot. But this board is a great place to get help re-focusing my attitude on problem-solving. There is a lot of it to do - especially for people with insomnia.

It's a good sign that you felt good after your titration though.

Do you have a sleep doctor? My sleep doc (a pulmonologist) sent a letter of medical necessity to my insurance and DME to get me an APAP. And I got one immediately. Don't listen to what the DME is telling you. In this biz, you sometimes have to ask for what you need over and over again and eventually you get it.

Jenny

[Bamalady]

Oh my, Mary, you certainly have a full plate, don't you?

Do hang in there. It will get better. Some folks take to treatment like a duck takes to water. For others it is a struggle to find the right pressure and the right mask to make the treatment work, and it takes some time.

What is the problem specifically? You say you don't always sleep with the machine. Why not? Of course, if you don't, the treatment is not going to work.

Are the kids big enough to take up some of the slack at home until you get things worked out?

I'm assuming you know about the link between Depression and Apnea. If not, there is a link to an article at the top of the Board that you might want to read.

If you are still having problems while on your back, contact your Dr. The pressure may need to be increased. As far as getting an Auto, it usually takes a Dr.'s order and an Insurance Co. that is willing to pay for it. Or you buy one out of pocket. If one DME doesn't want to give you an Auto on Dr.'s order, you can find one that will.

Keep reading and asking questions. I really wish I had found this place before I got all my equipment, but that didn't happen. However, I have found a great deal of information here, and lots of supportive people.

[Bones]

Hi Mary,

I can well relate to being sleep deprived and how awful that can make you feel. It took me over a year to really start feeling rested after I began cpap. My titration study went badly I guess and I wound up on a pressure of 3 cm less than what I really need. I had my pressure changed several times (always lower), put up with painful masks through many sleepless nights and just about gave up hope I don’t know how many times. Many times I was ready to quit my job and just chuck the whole cpap deal in the lake and curl up in a ball until I died. I read posts on this forum and others and kept wondering “if they can do it, why can’t I”? Eventually I got it into my thick skull that I would never sleep well until I found a mask that didn’t hurt me and got my pressure right. I eventually found the mask and finally got my clinic to set me up with an autopap for a couple of weeks to determine what was going on. I guess that was my biggest error was not asking for the auto trial a lot sooner. I began to feel pretty good after a few nights on the auto and I didn’t want to give it back. And I was pretty upset when it took 5 weeks for me to get an answer. My pressure was upped from 11 to 14 and after a few days I finally started to feel the results I’d been reading about all that time. I’ve been on cpap since Dec. of 2005, but I really have only been getting proper therapy since Jan. 2007. I guess the reason I’m telling you all this is that the support is here. I was just too stubborn to ask for help.

I can’t tell you how to deal with insurance for an autopap because I live in Canada. What I can tell you is if your husband is observing apneas, something is not right. You need to get ahold of your doc or clinic and tell them what your husband has told you. And how is you mask fit? I see by your profile that you are using the Swift. If it’s bothering you in any way, it won’t help you sleep.

This journey isn’t an easy one for most of us. There can be a lot of wrinkles to iron out. Chronic insomnia sure won’t make it any easier for you. I know how hard it is when you feel lousy all the time, but you need to bug people to get what you need. There’s lots of folks here that’ll give you moral support and great advice.

Brian

[DivinMercy]

What is the problem specifically? You say you don't always sleep with the machine. Why not?

Well, I didn't know if anyone wanted all the details or not, but at the risk of boring you all, I'll write 'em down...

First of all, only 4 children are still at home, with one married dau across the street (she has 3 children and one on the way) and another married dau 4 hrs away. So I am not as busy as I used to be.

I have been taking meds for depression/anxiety for approx. 10 years. A side effect of the med can be insomnia/sleep disturbance. Of course, in retrospect, there IS a link between OSA and depression...hmmm...

I also forgot to mention that I have degenerative disk disease and arthritis in my back and neck that makes even walking very far painful. Pain medicine for that can have side effects...also, sometimes I think that if I start waking up even a little, the pain is possibly waking me up all the way, if that makes sense.

When I went for titration, the RT gave me numbers of 7-15. 7 on my side and 15 on my back. When I went to my DME, she set the pressure at 13...when she explained why not 15, I understood it, but I can't remember why now.

I asked for an auto, but was told that insurance companies almost never pay for them (I guess you could add "if they can help it"). My sleep study RT had told me to really push for the auto, but I ...well...I wanted to get the lay of the land, so to speak, and not be aggressive from the get-go. I am not aggressive by nature, anyway. My father is a family doc (retired) so I have no problem whatsoever talking to docs and asking for things. I also have a very accomodating family doc, so if I need to ask for a new RX, I shouldn't have any trouble getting one.

So I take 8 pills a day; anti-depressant, anti-anxiety, muscle relaxers, Celebrex, and pain pills. My pain doc had me try Lunesta, but falling asleep isn't the prob....staying asleep is. I am supposed to try Ambien CR starting tonight. Don't want to keep adding meds!!!

I have tweaked the mask a bit after perusing this forum, have gotten a chin strap (which seems to work), cover for the hose after experiencing rain out and use saline gel to create a better seal. I still have some trouble with leaking when I turn my head, so I try not to move much. I have to sleep on my side because of the severe back pain, but apparently turn on my back in my sleep.

The only other thing I can think of is that I adjusted the ramp pressure from 4 to 6 because I felt like I was suffocating. Why do I sleep without the mask sometimes? I start out fully outfitted, sleep for maybe 2 hours, then (as usual) come downstairs and, after awhile, try to fall asleep in the easy chair and can maybe get another hour there. If I went back upstairs and put all that stuff on again, I would probably wake up my husband and I don't want to do that. Then when I nap (I HAVE to) I don't use the CPAP, as it is upstairs and going up and down the stairs HURTS. What a hassle transporting all that anyway.

If you are still reading, then God Bless you! I am truly sorry this is so long.
Thanks so much for all the helpful responses. Your caring has made a difference in my day and made thinking about the approaching night not as discouraging.

-Mary

[onecoknower]

Mary,
I certainly feel for you. It's tough getting used to the therapy. I also have a swift. I'm a side sleeper and it works OK for me. I'm certainly not one of the knowledgeable ones on the board, I'm still learning. But if you are a mouth breather, the swift isn't going to be a lot of help unless you tape your mouth or use some other method to make sure you don't breathe through your mouth.

Good luck to you.
Donna

[cookie246]

Dont give up -- i take an antidepressant in the morning and an antianxety at night. I try to keep a calm down routine at night. Wash my face, brsh my teeth, come to chat rooms, or read, or watch some documentary tv, take my night med and then off to bed. I slept through the night on my titration night and thenhad to come home with out the aide of the machine and mask. It was nearly 4 weeks before the DME could get the test results and my machine to me. The hold up was the sleep lab. Anyway, since I have kept my routine and i average about 7-8 hours anight with only a potty break some nights and then back to sleep really quick. No more insomnia, from the fear of the night terror dreams.

I am so grateful for the machine and the good sleep for the first time in nearly 5 years of really mesed up sleep. Insomnia, Rem sleep behavior disorder (nite terrors with acting out), wanting to sleep 24/7 and feeling like crap all the time.

I am so glad to have gotten help finally!

[bethlori]

Mary I sent you an email

[muld00n]

When I went for titration, the RT gave me numbers of 7-15. 7 on my side and 15 on my back.

Hi Mary, I am no doctor but I have experienced back trouble before and I know that sometimes sleeping on your back is the only option. This alone is reason enough for you to speak with your sleep specialist or family doctor and get him/her to prescribe an APAP.

Good luck and hang in there, the therapy works.

Steve

[Sleepless_in_LM]

Hi Mary!

Hang in there. I too have had serious back/neck pain. A couple of micro-disectomies and a double fusion in the neck have the pain uner control, but know how bad sleeping can be when there is constant pain.

I also am on an anti-depressant. I try to take that in the morning so as not to mess with the sleep as much. Then I take clonazapam at night. It is in the same family as many other anit-anxitey meds, but stays in the system much longer. My sleep doc uses it quite a bit for people with chronic pain to help them sleep. It hasn't been the miracle cure for me, but it gets me enough good sleep to feel pretty good.

As for the APAP... I went through a long battle to get mine. I finally decided that even though I couldn't afford it financially, I couldn't afford to be without it for my health, so I bought one out of pocket from cpap.com. I then continued the battle with the insurance company, and after several letters from my doc for medical necessity, the last one rather terse, the insurance company finally caved in and reimbursed me for it.

So keep trying. Work with your doc. If you are still having apneas on your back, then something isn't right. Eventually you will figure it out. Our prayers are with you.

[DivinMercy]

Thank you for all the help and good wishes. I did as suggested and searched for insomnia and CPAP and etc. and found a great thread.

Although it is gray outside today, my spirits were lifted yet again by this forum. A big thanks to all the private posters also This forum is phenomenal!!

I see my RT tomorrow and I will be firm

I will keep you all in prayer and continue to persevere!

-Mary

ps... rested gal, all it took was disabling Auto Links....voila! I am posting. Thx.

[Liam1965]

Amazing how things come full circle.

It was my post on depression (and some of my humor on CPAP) that Mary found (or at least, that was one of the sites she found).

I think it's cool, the full-cycle of this, she asks here, goes web-searching and finds my stuff, which was largely written (except for the depression thing) while I was an active participant here.

Mary, I hope you're doing better, and I'm really glad you got some value out of my depression essay. I love that it keeps helping people.

If anyone hasn't read it and thinks it might be useful to them, it's called "What Depression Means to Me" and can be read here:

http://liam-and-janet.blogspot.com/2005 ... to-me.html


Liam, happier about having written that one piece than virtually anything else he's ever written.

[DivinMercy]

Thanks again, Liam

I found Liam's post by searching for insomnia and advice and CPAP on this forum. His is close to the bottom of that thread. (I don't know how to link it, sorry.) That led me to his blog.

I got the pur-sleep stuff yesterday...I only ordered it 2 days ago!! The one named clear really helped relieve my congestion, which someone else mentioned here somewhere and I LOVE smelling good things while falling asleep! Thanks to Doc for pointing out this product. I slept 4.5 to 5 hours tonight....yesssssss!!

Blessings....Mary