First 4 Weeks with CPAP - Long

[bgoomba]

Not sure if this is interesting to anyone but I though I would share what my transition to using CPAP has been like. Not sure why I think I need to write all this down. Personal therapy perhaps.

I have been dealing with a number of problems that have been very bothersome the last several years. I was tired during the day. Not falling asleep at the wheel tired but just really run down and having a very hard time concentrating. As time went past I found myself more and more irritable. Very short tempered with my family. It got to the point that I went to the doctor. This was about 5 years ago. He diagnosed me with depression and started me on the drug Wellbutrin. Wellbutrin can sometimes act like a stimulant and I did perk up for a while and lost weight (40 lbs). I took myself off of it. Over the next year the weight came back and eventually so did the irritability and sleepiness. Went back to doctor who recommended that I go talk to their psychologist. After a series of discussions I ended up on a drug called Effexor. What a nightmare. That drug completely screwed me up and at one time I locked myself in a closet screaming and yelling because I thought someone was going to steal my children. Not sure how locking myself in the closet was going to help that but I wasn’t really myself at the time. Stopped taking that the next day. Went back to the doctor and was put on Welbutrin again and also Strattera for ADD. Strattera made me sleepy and didn’t really do anything other than give some really odd side affects. Finally ended up on Welbutrin and Adderal.

During this time I couldn’t help wonder if something else was at the root of the problem. I was doing better and was able to be more productive at work but at what cost? I started looking for other possible causes of my symptoms. One that seemed to stand out was apnea. Why? Because I snore very loudly and my wife mentioned that she thought I had stopped breathing one night. I did more research. Finally I went to the doctor (not the shrink) and said I want to look into possible sleep disorders.

After some talking I told her I want a sleep study. They only way I can get one that is covered by insurance is if a Doc prescribes one. I said I want one and she finally agreed.

The sleep study revealed that I have borderline moderate\severe apnea. I stopped breathing 29 times an hour. Blood oxygen levels went down below 90%. I thought that was interesting because when our kids had rsv, the docs got all freaky when that happened to our youngest kid and we had to keep her in the hospital for a couple of days.

A month and a half later I went in for titration. The pressure (or whatever it is) that they came up with is 11.

Next was a trip to the CPAP provider. The lady there was fairly nice. Through research here, I had decided that I wanted to try the Twilight Aura mask, The Breeze and the Opus. I also wanted the Puritan Bennet 420E for my machine so I could buy the Silverlining software. For some reason the CPAP provider lady kept trying to push a Fisher & Paykel CPAP and kept saying that it is auto-altitude adjusting and came with a heated hose. I finally said 'I want the Goodnight 420E' and she agreed. Had to order it though. They had a demo model that I could use till my machine came in.

When it came to masks she had quite a bit of advice. She didn’t carry the Twilight Aura. Said that none of her clients liked or used the Breeze. I talked about the modifications that people made so that it works better. She looked at me a little oddly so I let it drop. I ended up taking home a ComfortLite 2, a Mirage Swift II and an Opus to try.

I sleep on my sides and roll back and fourth quite a bit. I tend to stick my face in the pillow quite a bit as well so I really wanted something that works for side sleepers.

First mask attempt was the ComfortLite 2 because I thought it looked like it was similar to the Aura and the Breeze. 1st night I tried the nasal pillows with it. Didn’t like that at all. Virtually impossible for me to not keep knocking it to one side or another. Leaking constantly and hissing sounds. Not pleasant. After trying that for a short time I tried the Comfortlite 2 with the doohickey that covers my entire nose.(It came with both nasal pillows and nasal mask) That worked much better. I was able to keep it seated better and had fewer leaks. The problem that I had was once it started leaking, it took a considerable effort to get it back to a non leaking state and I ended up waking completely up to fiddle with it. Usually taking it completely off and then putting it back on did the trick.

After a couple of frustrating nights I switched to the Mirage Swift II which I thought was going to be a total failure. I figured I would not be able to sleep on both sides since the hose came out of the side and not the front. Turns out I could not have been more wrong. Firstly, the head gear is fairly light. Didn’t bother me much. I was still struggling getting used to CPAP but was having more success with the swift. My big problem with the Swift initially was discomfort. The Swift puts some upward pressure on my nose and I gave up trying CPAP a couple of nights because my nose was sore. I shaved my mustache below my nose a little bit and that helped. Just enough to keep the whiskers out of the way. Things started to get a little better. First big plus for me was that it was very easy to keep in place without big leaks for me. For some reason it stays seated much better for me and I do not have to have the straps all that tight for it to be so. The second big plus is I can burry my face in the pillow, often times doing that just presses it a little more firmly onto my nose without causing leaks. Nose does get a little more sore when I do that. When it does leak, I can usually give it a little turn or just lift it slightly and it seats back nicely. Sleeping on the hose side works fine too. It dislodges more often but I don’t really notice the hose even when I am laying on it.

Finally I tried the Opus. I was convinced it was going to work great. I wanted to save it to the last so I would be trying it after adjusting to CPAP. It was an utter and complete failure for me. Constantly having problems. Could never get a good seal with it. It was a hissing, leaking mess for me. No matter what I did, I couldn’t get it to work. Very noisy, air blowing out everywhere. I didn’t make it through the night before switching back to the Swift.

I sent the ComfortLite2 and the Opus back and chose the Mirage Swift II. I do have some problems with it on occasion. There is a little slider that is used to secure the nasal pillows. I sometimes manage to slide it to one side or another. When that happens it hisses quite a bit. Sometimes it hisses and I am not sure from where. I often end up pressing the sides together and that usually stops the problem. When trying to put it on at night when its dark, sometimes the little strap that hooks the hose to the head straps slides all the way down to the nose piece and it can be a pain figuring out how everything goes.

After just under 3 weeks, my nose didn’t get sore any more. I loosened the straps a little. Turns out that I don’t need to be squashing my nose to oblivion to keep it seated.

The Goodnight 420E has been very nifty. My wife and I sleep with a fan running so we cant hear it. Its very small and works pretty darn well for me. Even without the fan its pretty quiet. I love the shape and small size. Its just a little cube and is surprisingly small. Has worked great on camping trips (not really camping, Travel Trailer and electrical hookups). Things to note, there is an extra little hose that runs down the center of big hose. This little hose connects to a sensor in the machine. Evidently that sensor is very sensitive to moisture. According to the CPAP supplier lady, I need to be very careful when washing the hosing. Moisture in the little hose can ruin the 420E for good. It will stop working if that sensor gets messed up. The 420 comes with little plugs that can be used to plug the little hose when washing the big hose. The CPAP lady said its best to tape them to the top of the machine so they don’t get lost. The machine is pretty light and easy to pull off things like night stands. I have not had a problem as of yet. I may get some Velcro strips and use them to stick it down. Heck, its light enough, I wonder if I could stick it to the wall. I want to buy the software for it but don’t have the money as of yet.

I have not used the humidifier. There are 4 reasons for this. I am very forgetful. Reason 1, if I forget to turn off the heater, I could ruin it. Reason 2, if I forget to empty the water in the morning, that can lead to problems to. I can guarantee that I will forget both items. Reason 3, I sleep with my bedroom very very cold and that can cause condensation I have been told. There isn’t a heated hose for the 420E and I have not constructed an insulating sleeve yet. I may do that because I bet it would reduce the annoying sound when the hose rubs against the wall when I roll over. Reason 4, I hate breathing warm air. Warm moist air would be worse. Pre-CPAP I could not sleep with my nose under the covers because I hate breathing warm air. Bugs me. So far I have not had a problem not using the humidifier. I do live in a desert with very dry air. I may hook up the humidifier and not turn on the heater and see if that works ok. My nose gets sore sometimes. I think that happens when my mouth flops open and air rushes in my nose and out my mouth.

I do have problems with my mouth coming open when sleeping, I think. Its the only explanation for some a couple of things I have run into. Every once in a while, I wake up and my mouth is so dry that I almost feel panic. Mouth is so dry it takes me a minute to work up enough spit to moisten it up. I get a suffocation feeling too. I think that is because my mouth is open and it gets dried out. Then, when I wake up and close it, I have to readjust to the CPAP pressure and I have a brief suffocation feeling. That has only happened a couple of times when I end up on my back.

The air pressure was really odd at first. Felt like my nose was going to pop. After a week, I didn’t even notice the pressure. Sometimes I open my mouth and let some air rush out just to make sure the CPAP machine is working because I cant tell. I breath as easy with the CPAP now as I do with out it. Its interesting. In the morning, I take the mask off before I turn the machine off because it almost feels like air is being sucked out of my nose when its turned off. Its an odd feeling.

I have my first stupid CPAP trick. The super long whistle. Kids think its funny. Take a deep breath, open my mouth, purse my lips and let the cpap pressure whistle for me and slowly exhale. I can go for quite a while.

I am just now getting to the point where sleeping with the CPAP is something that I prefer. Not sure why. Perhaps its a comfort thing or something. I am starting to get the feeling that I would prefer sleeping with a CPAP over sleeping without.

In the last few days I have stopped rolling from side to side. I wake up in the same position I fall asleep in. My wife says I have stopped twitching. She said I used to twitch on and off all through the night.

I reason I am posting this mini-novel is because I told myself I would do it after what I felt was my first good night of sleep. Last night may have been it. Its been just over 3 weeks since I first started. Went to bed at 10 last night, woke up at 5:50 and said to myself, feel pretty good. Feel like getting up. So I got up instead of sleeping for another hour or so. Early to work too.

After all the psycho-drugs and crap that I have dealt with, I have had so much doubt that I would ever have this resolved. Not sure if I would ever feel well rested and even tempered. Felt like I would never treat my kids is such a way that they are no longer afraid that I am going to be grumpy or yell. In the past, when I felt ok in the morning I would say to myself, perhaps I am not tired. Just thinking that would cause a big yawn. Nope still tired. No yawns this morning. My focus is pretty good.

I still have doubt though. Last weekend I was still rather grumpy. I keep hoping that there is a solution and hope that CPAP is it. If it is, many things could get better, especially with my family life.

I have lost 8 lbs since I started CPAP. I wonder if its because of the extra effort needed to breath against the constant pressure of the CPAP. I need to go check my blood pressure to see if its come down at all.

Both my bother and father snore exceptionally loud. Both of them are very interested in how things turn out for me. My brother especially.

If I start feeling like I do today everyday, I may start to feel a little hopeful.

I do have some questions though. How often does everyone wash their mask and hosing? The CPAP lady says to do it every 3 days. I have not washed every 3 days. What kind of detergent do you use? I used dish soap last time and no matter how much I rinsed, it smelled like fricken lemons all night and really bothered me. All I did was poor soapy water through the hose. Is that all I need to do? Do I need to wash the hose as much if I don’t use the humidifier?

One of the odd things I run into is when I take off the mask in the morning, I smell a smell like a iron heating up or the hot smell when ironing clothing when the iron is a little too hot. Doesn’t really bother me but its just odd.

Does the plastic smell ever abate? I don’t like the plastic smell so much.

Anyway, that’s all I have right now. Not sure if there is anyone thinking about starting CPAP that might find this interesting. Initially, I was pissed off at the idea of being hooked up to a machine. Felt stupid and thought I looked dumb with a mask on. Felt silly. Completely over that. My wife loves it, I don’t snore anymore and don’t wake her up. It hasn’t been like flipping a switch for me. Its been a 2 step process for me. Get used to sleeping with a CPAP because I didn’t get that great of sleep initially. Now that I am getting used to it I think its time to start recovery which is step 2. Not sure what to expect. I don’t really remember what its like to feel really well rested. I hope today is a good indication as I feel pretty good.

[NeurosurgeryNP]

I use Johnson and Johnson Baby wash to clean my supplies. It takes the plastic smell away and it is pleasant to smell.

I clean my mask much, much less than I was recommended to. Don't be my example.

As for the heated humidifier - I can't go without it, ever. I use the Aussie Heated hose and this stops rainout.

[cflame1]

you can always try pur-sleep

[DannyB]

what cflame1 said about the plastic smells! Here's a little thread about that:

viewtopic.php?=23344&highlight=pur+sleep+plastic

[Guest]

I am replying to this because it is a wonderful rendition of the process we all go thru. Every new patient would benefit from reading this post. Thank you, though it was long, it was trully genuine. Good luck.
PUR-SLEEP is very helpful in masking other odors as well as relaxing me while I fall asleep. I share this with my patients here in the lab.
Take care and keepus informed

[lmmo]

oops, that guest post was me...

[cindyh]

Great read Yes, it is what i have been going through too, all the masks i have tried that didnt' work, meaning large leaks... and uncomfortable ones too... I finally got the ultra mirage full face 2 days ago and I am so far feeling better than ever.. just makes me wonder what 2 weeks will bring or if this is a fluke I am glad you are feeling better and found out what it was.. The docs pushed anti depressants at me also and anti anxiety, but my oxygen was dropping in the 60's when i got tested, wouldnt anybody be anxious with that ? LOL... anywyay, glad to hear you are feeling so much better... I am Happy for you
cindy

[zorrro13]

They really screwed you around for many years. You off all the drugs now?
i guess i was lucky, no what am i saying none of us here with osa are lucky... but when it hit it hit hard and I became an angry short tempered person overnight and that is totally opposite to my normal nature. believe it or not i just googled my symptoms and went to the doc and said "i have sleep apnea" so by passed what seems to be a familiar routine of anti depresents etc. great your adapting and remember if your like me you will have many re lapses. for no reason at all the last 2 nights my mask on the floor and i feel like i just got dropped into a sewer for a week. actually i live in bkk and that does happen for real occasionaly

[Slinky]

Unlike those who love the PurrSleep I don't want ANY fragrances in my humidified air from my CPAP. Most all man-made fragrances give me headaches and/or sneezies - and this includes many of the supposedly "natural" potpouris. I try to buy all unscented products.

I use an unscented baby shampoo and rinse thoroughly w/vinegar WHEN I do wash my mask and hose (which isn't all that often, sure isn't daily!). When I do do it I do it first thing in the morning and hang the hose over the top of my door to dry for the day. Or even let it hang for two days and switch over to the new hose I was sent. For some reason my mask doesn't fit as well the first night after washing it. Go figure.

Thank you for posting your experience. It should be a big help to other newbies.

[bgoomba]

They really screwed you around for many years. You off all the drugs now?

I have quit taking the drugs as of yet. Going to try to gradually lower doses over the next month. Get rid of them one at a time. The effexor experience sucked big time. Things did not go well for the week following quiting and would prefer to avoid that.

[bgoomba]

The baby shampoo sounds like a great idea. Still using it for my 3 year old so will be able to try cleaning with it tonight. I have put if off for a week now.


Still have yet to hook up the humidifier. Actually been doing fairly well without it.


My 3 year old woke up last night because of a nightmare. I went and laid down with her. I fell asleep before she did. Woke up to her poking me. 'Dad, can mommy come in instead. Your making noises'

As I was waking up, I was on my back with my mouth wide open and could still feel the echo of my snore rattling in my head.

I wonder if being on CPAP makes it harder to sleep without it. Not complaining really.

[bgoomba]

Had another good night. Looks like I am getting very used to wearing the mask at night.

Actually looking forward to going to bed a little early so I can wake up and feel good in the morning.