Lonely, frustrated and depressed about CPAP, cannot sleep

[Birddog]

I never used nasal pillow,always had the activa mask as someone at the office i was diagnosed said her husband used the activa mask and it stopped alot of leak issues so that's the only one i have ever used.Only thing i don't like is at 3am waking up with alot of rainout sometimes.have yet to try the cover for outside of hose.Hang in there and don;t give up,try more masks/pillows

[Babette]

Birddog - definitely get a cover for your main hose. I also cover the short hose leading from my face to the main hose.

They are terribly easy to make - just sew up a tube of fleece, and secure the ends with a bit of Velcro One Wrap.

Or you can buy them online just about everywhere.

I recently bought the Resmed zippered cover, just for grins, and it's working very nicely, too. That zipper sure makes it a snap to put on and off. Definitely worth $18 to me!

Lastly, don't be afraid to try another mask, if you get the opportunity. There are a couple of free trials of various masks going on - check out the links in my signature block.

Cheers,
B.

[pammieb]

Sorry to hear about your frustration and I feel your pain (CPAP user for 3 weeks). I keep waiting for the "miracle" to happen. But as I have found out this is a great forum because you will not feel alone or odd or unusual. You have a lot of company.

I am trying to take it one night at a time (every night is a different experience!). Just know that you are deifinitely not alone in what you are feeling - I hope that does help.

[Wulfman]

I hate CPAP! I want to throw the stupid machine out the window and never deal with it again. I have now not slept for three nights in a row. Have been trying this for the past three weeks and feel like throwing in the towel. Have tried nasal mask, moved too much during the night, tried Swift LT nasal pillows, can't stop leakage. I am very, very frustrated and at the same time extremely anxious that I will pass away in my sleep, have a heart attack, etc b ut I also know that not getting any sleep with also cause car accidents, heart attacks, increased depression. I feel like I am damned if I do and damned if I don't. I do not know where to put in my information. I have about a five or six year old Resmed 6 with Swift LT nasal pillows and have tried with and without the chin strap. First night I got the nasal pillows I slept fine and since then I have not been able to get a comfortable seal with them. I washed them today and still having problems. Tape does not work, chin strap does not work, and headgear keeps slipping because of my hair. I just plain feel like giving up and say if God wants to take me in the middle of the night then let me die. I was sleeping much better before this whole thing came along. I hate it, hate it, hate it and I feel like it will never get any better. I may as well just swear off ever getting another good night's sleep. I am not sleeping with this thing again until I can go see my sleep doctor again. This is getting rediculous. I cannot function like this anymore.

OK.......now that you've gotten that frustration out of your system, do you think you can approach this therapy in a little more rational way? Personally, I'm not all that sympathetic to "adults" who whine like little kids.

Could you give us a little more history on how long you've been trying to get this to work, did you go through a sleep study, where you obtained your equipment (that ResMed S6 is a number of years and generations old), what was your prescribed pressure and any other things you can think about that may help us offer some advice?


Den

[swcompassionate]

All I can say is wow! Thank you all so much for your support and encouragement. I did sleep without the CPAP since I was not able to get back to sleep until 4:00a last night. I had to call in sick today. I am a social worker so I work with people all day and I have to be awake to function. I had to cancel on two consumers today. That adds additional frustration and guilt! You all gave very good suggestions on the forum. I was thinking of trying the medium size pillows tonight. As I said before my Swift LT came with small, medium, and large. Whoever mentioned about velcro in the hair I was thinking about the same thing but does it hurt the hair taking it out in the morning? How do I find a CAP pap that someone was talking about? For the other's who asked I am a 35 y/o female. I think I am also going to try to read with it on since I can do that with this product to help myself settle down and if I do not sleep with it the entire night that is okay. The reason I took the older machine from my father-in-law is that it would have cost me $165 for the first month to rent and $44 per month for the remaining months. Unfortunately, I just do not have the money to do that every month. I would consider taking something to help me sleep but I am already on a medication, Trazadone, to help me sleep as well as magnesium citrate to help me relax. I am afraid there might be interaction between the two. I will check for interactions at drug.com. Do you think I should start by calling my sleep doctor or the RT at Lincare, my home care agency. I think to I just have to stop forcing myself to sleep through the entire night with it. Just do what I can until I get adjusted.

[Mebake]

Please do not give up, I have been on CPAP for about 2 months it only gets better. I have been through 4 masks fist was a full face they gave me at the study. Now broken because I did throw it at the wall. Finally settled on the Swift LT I do not have the problem you do I lost mine by attrition and shave what is left. It took me about a month to feel better and to sleep without issue. I did find with the Swift LT try the smallest size first and try not to over tighten the straps. I rarely have leek issues. My pryer AHI was 1.9 now down to 1.4 using this mask. I forget it is on sometimes and try to get out of bed. I can not imagine sleeping without it now. Please find the right mask for you and never give up. You are never alone.

[swcompassionate]

Hello again! In my last post I forgot to give some more information. I had a sleep study done towards the end of October 2008 and they said I was moderate while not in REM sleep and severe when in REM sleep. I am sorry but I forgot the exact numbers in terms of incidents. Then I went back for a second because they had to fit me with mask. Did not sleep more than two hours the first sleep study, slept four the second test because they gave me sleeping pill. Someone mentioned a pap cap but I could not find one on cpap.com. Can someone send a picture of it possibly? Thanks. Hope this information helps. Also, I am on a pressure of 10 with a heated humidifier and Swift LT mask with small size pillows.

[deerhound]

PapCap is at http://www.pur-sleep.com/content/?id=44

They also have some aroma things that a lot of people like.

Dale

[plr66]

SW, if you put "Swift LT" in the search box at the top of this page, you will pull up innumerable posts with tons of great hints for tweaking your mask. Definitely try the Medium pillow for a few nights, and even give the Large a try. Pull all your hair through and over the back strap. Turn on the machine only after you have the pillow and straps solidly placed. IMPORTANT: Make sure your pillow is right side up!! The fatter part will be against your upper lip, and the thinner part toward your nose. (Edit: Also be sure the side edges of the pillow are snugly "snapped" into the holder. I've had leaks by making a mistake with both these things when I was in a sleepless fog at the beginning). Back strap snug; top strap slightly looser so your nares are comfortable.

Now turn on the machine, lie down, and lay on your side, as you should sleep anyway. If you have any leaks around the prongs, very slightly move each nasal prong separately with a nudge of your finger, rather than re-seating the whole mask. If you can't quite get it solved that way, then try slightly tipping the whole pillow back & forth. It also occurs to me that my Swift LT may stay more stable because I use Padacheeks strap covers of wonderfully comfy fleece material. (Karen is a Forum member here, and has a website Padacheek.com). All the usual disclaimers--no vested interest, just really tickled with how great her product is, and how much it took away discomfort with the mask.

I would also mention that as frustrating as it is to get things just right with this therapy, one of the most important things you can do for yourself is to work on reframing the whole thing as a sort of project or puzzle with a great ending, and get your attitude turned around to become more constructive. C'mon, girl! That's what social workers do!! Make bedtime as pleasant as possible so you can begin to look forward to it. I agree that it's not simple, but it IS do-able! Keep reading and absorb all you can here, and you'll get lots and lots of help.

[packitin]

I don't know if this is the one or not, but there are some pictures here if you scroll down to Carbonman's post.

viewtopic/t37194/viewtopic.php?f=1&t=34 ... ap#p298559

(Incidentally, where is Carbonman, lately - probably riding his Trekkie bike around the snowy ranges of Colorado again)

Also, I used to take Trazodone quite frequently, but I've found that with increased usage, the effect wears out after about 2 months.
I changed over to Temazapam about 2 months ago, and found that it is better for me, and I can get to sleep just as fast, and its a lot milder, with no noticeable effects the next day, such as drowsiness. Trazodone may be o.k., but kept reading some things about it that I didn't like, at the urging of some forum members here. Ask your physician for a possible alternative drug.

Get back to us,
Jay

[Babette]

SW, when I first started therapy, I would mask up and turn on my machine, then sit in bed and read for about 30-45 minutes before going to sleep. I think it really helped me to learn to tolerate the machine. I don't do that now - I can mask up and be lights out in under 30 seconds. But I still sit and read in bed before I do that. Can't change that habit.

Reading in bed is a great thing. Another great thing that will help is PurSleep. Same people who sell the PAP CAP, which several have advocated.

Direct links to PAP CAP on the PurSleep website:

http://www.pur-sleep.com/content/?id=44

and

http://www.pur-sleep.com/products/produ ... category=6

I highly recommend you buy some PurSleep aromatherapy products. I avoided them when I was new, thinking it was more woo-woo stupid girly crap.

I finally broke down and tried it, and Hmmmmm! It seriously DOES take the edge off the therapy and make it more palatable. I haven't done exhaustive studies on which scent gives me the lowest AHI (many here have), I just use what smells good.

If you can't wait to test this theory out - go buy some AROMATHERAPY GRADE essential oil that you like the scent of, and put it on a cotton ball, and place that on a dish, below your machine's air intake. I like the Aura Cacia brand "Mellow Mix" alot, as well as a newer one called "Pillow Talk" or something Pillow. I find them at Super Supplements. Make sure whatever you buy is clearly labeled AROMATHERAPY. I also like several of the blends that PurSleep sells, so I have a whole shelf full of little bottles that I rotate through.

Best of luck!
B.

[Brisco]

I never posted my troubles here at cpaptalk.com But I applied the advice given to others.

Here is my experiance:
After years of waking up feeling like I was ran over by a mack truck dragging my self to work and every where else, I started using cpap for my severe sleep apnea (2.5 month ago) and it was a literal nightmare. I pulled the cpap machine of the table and on to the floor many nights, had my face blistered and dringed with condensation, I threw my mask across the bedroom several times through out the night, experianced the dry mouth syndrome. Spent many hours adjusting and reajusted my mask to get the right fit- I was determined to see what was the positive miracle that many people have experianced. And then it happend. Finally after the 2 months of struggling and appling advice from this site- I woke up feeling like I drank a pot of coffee. Bright eyed and bushy tailed. So this is what a living human being is supposed to feel like. Wow! I am set free and will never go back!!
Thanks for all the advice here at cpaptalk.com.

[JeffH]

CPAP therapy requires one thing to work...a decision that you are going to make it work. That sounds hard, cold, and cruel, but it's the truth.

When I started out I only had an old Sullivan bubble nasal mask. Talk about a piece of crap. You don't know how lucky you are to be getting started at this place in time of cpap treatment. The equipment is so far advanced from my first set up it's unbelievable.

The first thing I would change if I were you is your attitude about the machine and mask. It's critical.

JeffH (thinking along Den's lines)

[plr66]

I also meant to mention that it is really important to wash your face and dry it thoroughly before getting ready for bed. The 2-inch wide blue painter's tape for delicate surfaces should hold well if you roll your chapsticked lips inward and really press the tape on firmly & smoothly. Some people tear a couple of slim strips of the tape to put over that in a vertical position, for extra holding-power. Washing up also helps keep nasal pillows from leaking.

Be aware that yes you will have sore nares for about the first week or two while they toughen up. Put aloe hand cream on the edges of your nares several times every day, and Ayr gel inside the nares if sore (I don't recommend the Ayr at night because it makes your nose too slippery, and the nasal pillows easily become dislodged).

I am among those who found it incredibly better to leave the hose hanging down in front of me under the covers. Have never had a drop of rainout for that reason, and there is much more comfort to my li'l nose that way. Believe it or not, I am almost not conscious of carefully lifting the hose with me whenever I turn from one side to the other now.....and I sleep so much better, that I only seem to change sides 4-5 times per night rather than probably a thousand times pre-Cpap!!

[DELILAMA lama]

I feel the same way! just puked from my migraine 3rd day my busiest time of the year is the next 2 weeks i own a deli and market at a ski resort i am f ing freaking out hope you get some sleep they say it is overrated but tell that to my partner "tired" of not being able to pull my weight help lama