how long deciding cpap was your friend and not your enemy?

[Mathmagician]

I, too, was one of the lucky ones. Had a split night study and the next day I felt like someone had given me really great drugs! I couldn't wait to get my machine and feel that way every morning. I've been at it for about 3 months and have worn the mask for 8+ hours every night. APAP has made such a HUGE difference in my life that it is not just my friend - it's a best friend. What is it the kids say? BFF? Yes, I've fought masks, leaks, all the usual stuff, but the benefits outweigh the drawbacks so heavily that I am just fine with being a hosehead for life.

[frh]

I wanted to see my new Neurologist / sleep doc armed with a pile of ResScan reports. (There was no way to know if this guy would be a jerk like the last sleep doc.) My sleep study said CPAP at 6, and the machine has been on APAP at 7 and 12 for about a month. I decided to give my titrated pressure another chance for a couple of weeks. Only this time with data.

Three days ago, I showed the new doc my ResScan reports. I told him 6 makes me feel like I am suffocating with my new Opus 360 mask and I would like to set it to 8. He looked at a couple of the new reports (at 6) and a couple of the old ones (at 7 and 12). He said the higher pressure does not seem to cause centrals and told me to turn the pressure up to 10 and leave it on straight CPAP. (He said he does not like APAP.) He wants to see me in a couple of months and if I am still having trouble dialing it in, he will order a new titration study. Wow, the visit went way better than I thought it would.

10 was uncomfortable the night before last and my AHI was up to 5.3. So I set it to APAP at 8 and 10 last night. I slept for 6 hours before a major mask leak woke me up (about an hour early). Last night my AHI was 3.8 with 17 centrals and only 4 obstructive apneas. My 95th percentile pressure was 9.9, and I am beginning to think APAP with any kind of mask leak is a bad combination. I plan to go back to straight CPAP at 8 for at least a week and see what the data says. At least I got the doc's permission to change the pressure as I see fit.

From the start I have been having leaks that don't seem controllable. The problem is, I flop around in my sleep when I take a sleeping pill. I showed the doc reports from nights when I don't take one. My mask doesn't leak, but my AHI goes through the roof, I don't get any real sleep and I feel crappy the next day. The doc told me to keep taking them.

About a week ago the nurse at a doctor's office gave me a roll of 1-1/2" wide blue tape that only sticks to itself. I have been using it to secure my mask at night. It's not perfect, but works pretty good most nights. This morning I woke to the sound of air blowing. The headstrap was still securely taped to my forehead, but the nasal pillows were sitting on top of my nose. (My 95th percentile leak rate was back up to 20.4.)

The Opus 360 mask does not leak as much as the Swift FX did, but it's harder silicone is starting to make my nares really sore. Right now they're so tender the Swift FX mask would even hurt. I guess that means I will have to wear the Mirage Quattro full face mask until they heal. And that introduces another another variable to screw-up getting my treatment dialed-in. I am getting real tired of feeling tired and crappy after bad nights. But I'm also starting to have enough good nights to know how good I will be feeling when I finally get it dialed-in.

I really want CPAP to be my friend, but it keeps trying to test the friendship.

[Janknitz]

I started out in a pure hate relationship with my CPAP. I didn't want to sleep with a chunk of plastic stuck to my face, and did not see any reason for it.

But, my husband could sleep with me again since I was no longer snoring like a jet plane.

Still hated it.

But, I realized I didn't have any reflux while sleeping with it.

Hated it a lot--many mask troubles. Waking throughout the night to fix leaks and move the hose.

But, I slept 6 hours straight and woke up feeling . . . good.

Sort of liked it, mostly hated it. Tried new masks.

Still hated it.

Got my own machine and a humidifier--no more sore throat and dried out nose.

Liked it a tiny bit, hated it.

Slept all the way through a night. Woke on cloud 9. Nose hurt.

Loved it, hated it.

Got a Swift LT mask. no more nose hurt. Slept through several good nights. Felt calm during the day--after many years of constant stress.

Loved it, didn't hate it that much.

Tweaked my LT for less slippage, new nasal pillows, fixed my bed pillow situation.

Love it, love it, love it--most of the time.

It's an evolutionary process There are still some bad nights. But many, many good nights and even better days.

[Elena, are you still struggling? Can we help?]

[SwedishChef]

I think I'm also relatively lucky. (But for any people new to cpap or thinking about it - you may be, too!)

The night of my second sleep study - when I tried on masks and was titrated - I think I slept about 5 hours (I'll get to see the results next week) and already felt better than a "normal" night at home.

I picked up my machine that morning and have used it every day since. The first week things results were rougher - higher AHI, more leaks, but then things started calming down. Now - just into my third week - I'm getting very few events (AHI less than 1) and low leak rates. But during this whole time I've felt better - I can still get tired, of course, but am no longer easily exhausted. My overall energy level and mood have been more stable.

I have been able to use nasal pillows, which I think makes things a lot easier for me than a larger mask. But there are some hiccups - I sometimes end up with some air in my stomach, and I think I have some sore muscles (still, 2 weeks in) - perhaps from breathing out against 14 when lying on my side (I did switch EPR on, but still experience this). I think I may end up doing a bit of mouth taping or trying the cpap "cap" because I am sometimes awakened by air coming out of my mouth.

But overall, I can clearly feel the results, and the inconvenience is relatively low after 2 weeks, so it's an easy trade-off for me.

I am concerned that most of the few "events" I do have are reported by the S9 as "centrals" - while none of my events in my first sleep study were centrals. But haven't had a chance to talk to my sleep doctor about that yet. I'll do that next week at my appointment.

[brazospearl]

I fell in love with my machine immediately. There were several weeks between my sleep studies and receiving my machine, so I had some time to prepare myself mentally. LIke any intimate relationship, it's not all smooth sailing; there are leak concerns, humidifier issues, hose snafus, but basically things went well from the start.

[elena88]

Wow, I read each and every word, these are facinating stories! hope everyone joins in!

I have been struggling with coughing, and congestion..

my nasal passages are so swollen, and when I use the sprays it causes me to have a reactive cough, I think its mostly just
the grass pollens.. you know.. that time of year.. at least we dont have to worry about humidifiers in the summer!

boy, I didnt realize, because I started in march, that we get to pack em up for the summer.. makes it quicker to go to bed without having to clean
that and change the water..

(I also just ordered and received my "summer " hose.. the slimline from cpap.com.. and I packed up my heated hose.. and I bought a bunch of
new filters. )

I think everyone would love to hear more of these stories! Please keep them coming!

[Jaylee]

Overall I love my machine, I just hate wearing the masks. They interfere with my hair right now. I have half of it in braids at the moment and it makes it hard to get a good mask fit. I hate to take it out though because it was really painful having it done. I want to enjoy it while I can. Also, side sleeping and ear piercing do not mix. So I guess it is just the vain side of me that does not like the mask.

[torontoCPAPguy]

Wow, I read each and every word, these are facinating stories! hope everyone joins in!

I have been struggling with coughing, and congestion..

my nasal passages are so swollen, and when I use the sprays it causes me to have a reactive cough, I think its mostly just
the grass pollens.. you know.. that time of year.. at least we dont have to worry about humidifiers in the summer!

boy, I didnt realize, because I started in march, that we get to pack em up for the summer.. makes it quicker to go to bed without having to clean
that and change the water..

(I also just ordered and received my "summer " hose.. the slimline from cpap.com.. and I packed up my heated hose.. and I bought a bunch of
new filters. )

I think everyone would love to hear more of these stories! Please keep them coming!

Coughing and congestion. Try moving north of Toronto and you'll find out what allergy season is all about!! I use the spray lightly and take a nasal decongestant/allergy med now and then. Find that changing the filter more often and installing an electronic air cleaner in the house along with central air helped a lot. So does vacuuming with a good vacuum (stay away from the Dyson). And before you store away your humidifier... I also find that running the humidifier on low helps a bunch and if I am really congested I crank it up as high as I can take it (I hate hot air). I am now wondering if I can cascade my humidifiers and run them in 'passover' mode without any heat running. I have four of them. At the hospital when I was on oxygen it seems to me that they actually bubbled the oxygen through the water and picked it up off the top to feed into me. Ahhhh. Cool moist air. The few days I was awake and on oxygen were much more comfortable I am sure. The days with the tube down my throat I am sure would not have been had I been conscious but blessedly I was in alal land. See an allergist and find a nose spray and allergy med that works for you if that's what is causing your congestion. It will make all the difference in the world between a good night and a miserable night. Good luck. Keep at it.... this is always a work in progress (just spoke to a friend who is a ten year user and he is still playing around with gear and stuff).

[Janknitz]

Elena, maybe it's time to see an ENT or allergist and get better control over your allergies?

There are lots of things to help. Steroid nasal sprays can probably calm a lot of that inflammation down. Some of the newer antihistamines (I take generic Claritin) have few side effects and keep things in check.

I'm also taking Singulair which is really helping the reactive airway component of my asthma.

It seems to take a lot of body maintenance to get this CPAP thing finely tuned, but worth it when it's all working right.

[elena88]

hi there!
I see an ent every few months, (for LPR) and I have an allergist who gave me a steroid spray and the ent gave me the other ones..
I have non allergic rhynitis and allergic rhynitis makes my nose swollen on the inside all the time.. but Im used to
that too. The doctor looked up there and it was so swollen she was sure I had to have a polyp so she
sent me for a head xray, but it was just swelling. Just your run of the mill sinus stuff everybody deals with.

We have no carpet so I dont have to vacuum those..

Im just ultra sensitive to things, you know one of those people who has an attack from inhaling a tiny speck of my own saliva!!!

I dont have asthma, just RAD, its not a big deal, really. Im used to is, and Im sure lots of people deal with it.
Its just harder to get settled in with the apap..
thanks for the tips!

okay then, more stories!

[Patrick A]

About a week.

[grandmma]

The enemy is the work it takes to maintain my friend and finding the perfect mask and trying to keep it from smooshing against my face and waking me up and so on.

I'll second that. My machine was my friend from the start, I was determined about that. No choice, no debate. The way I felt pre-CPAP meant the decision was made easier, I guess, too. And yes, I dislike the constant fiddling with the mask settings, the initial trials for months to find one that I could at least live with, that would seal for the majority of the night. Getting the mouth leaks under control. Learning about machine settings, the trial and error that is necessary for the majority of us. But never was the machine considered the enemy, only the process.

Elena, I'm very sensitive allergy-wise, depending on the seasons. Nothing like you're experiencing, however. And much better now, since it's not all year round. But that also makes the process frustrating - that nose itch you just have to relieve, always when the mask is JUST settled!