Did you start cpap well but then felt benefits slide away ?

This poll is a follow on from the below thread.
viewtopic/t40065/UARS-related-poll--How ... wake-.html

I had to reduce the original list of questions to get the poll accepted.

DSM

I'm 18 months on XPAP and still waiting to feel rested. I wake up many times during the night and struggle to wake up when the alarm goes off. I have never woken up refreshed.

Bev

I've been on cpap since July. Before I started therapy, I pretty much set in a chair all day with little or no desire to move. I must say I'm better than I was. I still have days (like today) when I feel like crap, and ornery, don't want to deal with people or any thing else. But I have days when I feel great, and want to do things. I don't know what makes some days great-and other days just "suck"?
Thanks, Larry...

Been on xPap for just over 3 months. I'm doing pretty well, i think. I wake up on my own and feel ready to start the day. My main issues were i was tired but it was a direct result of my excessive snoring which was making my girlfriend pretty miserable. She was a real trooper but it was taking it's toll. I would stress out over keeping her up and that made me sleep less than 5 hrs a day if that.

My ex-wife never complained about my snoring, but my g/f just couldn't handle it. I wish i could say i did it for myself, but i did it for her. The results tho have been very good IMO.

I have to clarify that I'm an accountant and i'm working 12 to 14 hr days right now, so ya I'm tired but not as tired as i used to be in past years. (it could also be that I'm happier with the person I'm with than i was with the EX)

I went on to cpap in 2005 - bought a Remstar Auto (great machine) just as they were becoming popular. Ran it in cpap mode whilst participating in a Mayo Healthcare study. Felt it was like being on a real high (turns out my titration was for 13 but the clinic mistyped it as 15 so I was on 15 for 18 months before I worked out 13 was better, then learned of their mistake). Then after 6 weeks switched to Auto mode but ran it in a tight min-max band (8-16). after 6 months was becoming alarmed that daytime sleepiness & sluggishness was returning. Was starting to feel a bit desperate (concious of my employability). Then after looking into bilevel, found a great bilevel at a fantastic price (Puritan Bennett Knightstar PB330) - played with it for a while then switched to it & felt the therapy take off again. During this phase managed to get weight down to 84 KG from a high of 107 KG). Was running the PB330 at 8/15. Still hadn't realized there had been a mistake.

But, after about 12 months again started to feel a decline setting in. Started putting on weight again & falling asleep at work. Did another sleep study in 2007 & corrected the settings on the PB330 after using a Vpap III to gather data that clearly showed the settings were causing an AHI of around 40-50 AHI !.

Got by for 2007 but then managed to get a Bipap Auto SV & had a wonderful period (6-9 months) of what seemed excellent therapy also got a Vpap Adapt SV & now am using that as at this time daytimes are very good.

It is of interest to me that there seems to be a pattern of success followed by decline - experiment - success then decline - experiment - success (& hope fully the decline is under control).

After nearly 4 years on xPAP am still trying to understand why it has fluctuated the way it has but because I have always managed to get it back under control am sure I can keep it this way.

DSM

I just rode my new roadbike 20 miles this evening and exercise 4X a week on the elliptical. Before cpap, I couldn't take a 15 minute walk around the neighborhood and had gained 20 pounds. So, yeah, these 6 months have been great.

However, sleep still feels like shit.. actually worse on cpap - I used to sleep like the dead (no jokes please) for 9 hours in a row before cpap.

i started out great but after about 8 months it started sliding downhill.
have not got a firm grip on the problem but i have a good idea of what it is.
biggest problem is finding time to really analyze things
and being able to think straight

glad to hear you are doing well Elader
i hope to be there someday

None of the above.

I felt better for a while now things have slid backwards and unsure why. Numbers still look good but I sure don't feel like it. Of course we change insurance carriers at work the first of the year and this one is high deductible and not nearly as good of coverage so hate to think of trying to get it sorted out with the doctor.

I have been on apap for 4 years now, for about 2 years I felt great now I am back to being tired all the time. My numbers are great between 0-1.5 AHI. I still have a number of FL, snores & VB. I also awaken 4-5 times a night, I fall right back to sleep after these arousals. When I awaken in the morning I don't feel refreshed & the tirdness lingers all day.

OutaSync wrote:I'm 18 months on XPAP and still waiting to feel rested. I wake up many times during the night and struggle to wake up when the alarm goes off. I have never woken up refreshed.

Bev

"Refreshed" is a subjective term. I doubt you will ever awake ready to jump out of bed. I don't awake refreshed, or even notice that much of a difference in the morning. For me the difference comes later in the day, the elimination of afternoon sleepiness. I've also had a significant reduction in acid reflux. As for changes in energy level or weight change, I haven't experienced either after about 100 days.

Jason S. wrote:

OutaSync wrote:I'm 18 months on XPAP and still waiting to feel rested. I wake up many times during the night and struggle to wake up when the alarm goes off. I have never woken up refreshed.

Bev

"Refreshed" is a subjective term. I doubt you will ever awake ready to jump out of bed. I don't awake refreshed, or even notice that much of a difference in the morning. For me the difference comes later in the day, the elimination of afternoon sleepiness. I've also had a significant reduction in acid reflux. As for changes in energy level or weight change, I haven't experienced either after about 100 days.

I am very much a newbie to xpap, but not a newbie to throwing my two cents. I've had a machine since March 6th - 13 nights. I've kept the mask on every night (averaging about 8 hours per night of usage). It is hard to adjust. I wake in the middle of the night, but not in a bad way like I sometimes did (reflux is down for me too). I've been monitoring my BP and it is reduced significantly since I've started treatment. After the first couple of days I developed a sore on my nose but my DME switched my masks out (Activa LT and I purchased a Micro,they are great in comparison). After just a few days of therapy I started feeling better - more refreshed, less tired, etc. I still feel, in general less tired, but I think I have adjusted my expectation of refreshed; I think that what seems good now would have felt absolutely wonderful a couple of weeks ago. I hope to adjust more fully to sleeping with the mask and all (this morning I felt like I was leaking all over the place, and did the fiddling thing, but my leak rate ended up good when I finally got up). I am expecting/hoping to reap the benefits - but am not sure that they will be profoundly felt.

You know, there seem to be quite a number of us that are doing everything 'right' and still have what we consider 'marginal improvements' in our quality of sleep and lives. I know cpap works for me because I lost the night sweats and heartburn and the daytime sleepiness and memory problems. But yet, like so many of us, I just don't feel like I get the sleep I should be getting. I would theorize its that I still have an AI of about 2.5-4, but my 'refreshness' does not correlate to the daily number.

I started in the summer of '05 (search for posts by WAFlowers). I immediately felt the benefits and still do. Except for a few nights over the years (few enough to count on the fingers of one hand I believe) when I was so congested with a cold that nasal CPAP wouldn't do anything I've used it every night!

I never got that great. I came close for a handful of days after the first couple of weeks and a switch to a FFM.

Some of the symptoms have returned but I'm not sure if they are directly apnea related. The sleepiness is gone and has not returned. But being tired and have fogged thinking is returning.