POLL: How effective is your therapy?

[ameriken]

(For anyone who doesn't know, "XPAP" is generic for any kind of machine, i.e. CPAP, BiPAP, ASV, etc).

I was thinking about my therapy this morning. After nearly 4 months of being on the machine, I know I am far better off than before I started this therapy. My wife tells me I used to look pale every day and I have my color back. I was unable to focus, concentrate, or hold a conversation and that has improved.

However, I still wake up still feeling a bit like I've been run over by a truck. It takes me a while to really get going in the morning. I still have yet to experience a time when I can wake up feeling rested and refreshed and ready to take on the challenges of the day. I still need a 30 minute nap sometimes, yesterday it was an hour. I'll have an AHI of 5 on one day, and 16 the next and nothing else has changed from one night to the next. I rarely have an AHI under 5.

While it has helped and I have no intention of quitting, I feel like I have gone from severe sleep apnea to moderate sleep apnea. I am grateful for the improvement, but I know it can be better, and I just haven't figured out how to get there.

So I think, at this stage of my therapy, I would say that it has been 'somewhat effective'.

I'm curious how everyone else would rate themselves, regardless of how long you've been on therapy.

[Slartybartfast]

Ok, I'm in the top 20%. What do I win????

[JohnBFisher]

In my case, it's mostly effective .. but then my issue is not just xPAP therapy based. When I'm having a bad day with the neurological symptoms, then my sleep is also horrible. I dread going to sleep. Have insomnia issues. Get horrible sleep when I do go to sleep. Medication helps ... some.

But none of that has nothing to do with the xPAP therapy. So, it's as effective as it can be ... considering the fact that my ASV unit has to work with a particularly grumpy old guy!

[snardo]

I recently had the opportunity to experience life without xPAP - the first time in about 3+ years - due to power failure associated with a big storm in the middle of the night. I am amazed at how much of a difference it makes in my life! Usually I put the mask on, turn off the light and I might have one brief awakening, barring any particularly vivid dreaming at least. After losing power around midnight the night of the storm(no battery or generator backup) I then suffered through a series of 30-45 minute naps with full wakenings in between. In the morning I felt like I hadn't really slept at all. Seeing the clock every hour or more really is not the way to get through the night. Needles to say I'm very thankful for my CPAP and for how well I've adapted to the therapy.

Granted, I'm not one to hop out of bed with a spring in my step in the morning, but I know it makes a huge difference in my ability to cope, think, process, funtion, etc...

[carbonman]

1-Very effective: I'm doing very well and feel like I'm back to normal


I have found that "back to normal" is a matter of perspective.
Before I knew anything about OSA, I thought
pain, fatigue and struggling through life everyday was "normal".

Once I started cpap, I discovered that pain and
fatigue are not "normal". Feeling half way decent and
having energy to watch tv at night or go for a long bike ride and
not suffer, started to feel "normal".

W/a couple of years of therapy, riding 4-5K miles
a year on my bike, playing my guitars again,
being able to remember things and just generally
feeling way better than before therapy, started to feel, "normal".

I still had issues w/waking 3-5 times a night, but therapy was still good,
I figured that this was as good as it gets and must be "normal"..

Wrong again.
Since I started using Dexilant for my stomach problems and
it is working, I no longer wake 3-5 times a night, due to sour stomach, etc.
I am now sleeping 5-7hrs, w/out waking.
I'm now reaching yet another plateau.
I wake refreshed more than ever. More energy....
can that be possible?
Nagging little things like BPH are getting better.
Nagging little injuries...like strained/pulled muscles
heal in a few days instead of weeks.
My general out look on life is improving.
Why? More and better sleep.
So is this the new "normal".

I'm going to accept it as is... and enjoy...
but will continue to see if I can discover how to reach the next plateau.
Why stop now?

[ThirdOutOfFive]

I am definitely more awake and able to think in the morning, but I hit the wall anywhere from 3 pm to 5 pm. It's hard for me to assess how much the stress of starting PAPpy vs. the change of seasons is contributing to a flare up of fibromyalgia. I am experiencing some dry eyes, too. But, mostly I would say that I am benefitting from the therapy. Hubby is very happy not to be awakened by my "buzz saw."

[Gaga58]

I submitted "somewhat effective" only because I've been doing my therapy just a little over a month. Can I tell the difference when I get more than a couple hours sleep at night...you bet! I have other outliers that at present will keep me from really being able to get "true" therapy results, or more than 4 hours of sleep at a time, but I can definitely tell a difference on that rare occasion I get 4 hours with my machine. I'm much more alert on waking up and while I get tired in the afternoon, I'm not dragging so bad I wonder if I can make the drive home. Do I believe it will one day BE effective for me? Yes I do and I really look forward to that day.

[Carl LaFong]

I voted very effective, but I can't really say what "normal" is because I've had this OSA curse for so freakin' long. But I do know this:

1. I no longer stew on the couch for an hour drinking coffee every morning while I try to "get it together" before getting ready for work. I've actually caught myself being quite active in the morning: straightening up the house, doing emails, little things like that.

2. I can sleep on my back (preferred) straight thru the night and love it!

3. I can actually have conversations and participate in meetings at work without getting lost in the morass of a muddled mind.

4. I'm no longer a zombie by 2pm.

5. My face no longer resembles the jailhouse mugshot of a strung-out meth-head.

6. My fiancee appreciates my new-found "vigor". She may marry me after all.

My AHI numbers can vary quite a bit, from maybe 7 to .6. But SleepyHead tells me the spikes come mostly within the first hour or so of waking up in the morning. Understandable. Sure beats the 70+ AHI and 02 starvation from the pre-CPAP days!

[journey]

Good to see a lot of people are gaining benfit from their XPAP treatment. What a wonderful device. I have had no real significant issues getting used to it. After 17 months on CPAP I am feeling great and regaining many of life's pleasures, ie good sleep, fully awake when I open my eyes in the morning, no longer need to stand in the shower for 15 minutes to wake up somewhat, no need to morning coffee or two, able to get up early to play and enjoy my golf, can keep up with thinking about and working on multiple activities at my job again. I noticed almost immediate results but over this extended period of time I am now thinking clearly again and feel like participating again rather than just existing as I was before. My AHI ranges from 0.4 - 4.2 but mostly less than 2.5, which is much better than the 46 before my treatment started.

The only issues I appear to have are nasal congestion occasionally and the tendency to drop off to sleep quite readily if I put my feet up and read a book, watch a video, TV or other activity for about 15 minutes. I tend to be able to concentrate longer if sitting upright, ie I last about 25minutes before nodding off. If I lie down I will be asleep within 10 minutes, even after just getting out of bed after a typical 6.5hours sleep. This is a small downside and I hope that this issue also dissappears in time. I exercise a lot these days and find that the nasal congestion is much less if I exercise regularly, particularly if part of the exercise is harder. After building up to it I am able to run for more than 20 minutes at time a few days a week which seems to do help with the nasal issue.

For those struggling, hang in there as the evidence is that those who persist will be better off by far.

Take care all.

W

[Kody]

However, I still wake up still feeling a bit like I've been run over by a truck. It takes me a while to really get going in the morning. I still have yet to experience a time when I can wake up feeling rested and refreshed and ready to take on the challenges of the day. I still need a 30 minute nap sometimes, yesterday it was an hour. I'll have an AHI of 5 on one day, and 16 the next and nothing else has changed from one night to the next. I rarely have an AHI under 5.

Wow this sounds like my case. My AHI fluctuates all over the place from 4.-16. for no apparent reason. However the new memory pillow seems to be making a difference keeping the numbers lower than they were. My RRT lady doesn't want to change anything on my ASV and admits she's nervous because it's a complicated machine, so she now has put in a referral to a the sleep Dr. This is a long haul for some of us I think, but I'm trying to keep a positive attitude, and keeping at it. I do feel at least 60% better than I did before, and hope it will improve if things can get dialed in better.

[lullaby]

I've been on CPAP about 4 months now. My experience - I've been compliant throughout and have low ahi most nights however i suffer constant mask leaks, puffy eyes every morning, strap marks, terrible nights sleep, feel just as bad as before CPAP, people say i'm now looking more tired than before CPAP, i've tried just about every FFM available (mouth breather). I feel like tossing it in as it seems to more trouble than it's worth.

[robysue]

1-Very effective: I'm doing very well and feel like I'm back to normal


I have found that "back to normal" is a matter of perspective.
Before I knew anything about OSA, I thought
pain, fatigue and struggling through life everyday was "normal".

Once I started cpap, I discovered that pain and
fatigue are not "normal". Feeling half way decent and
having energy to watch tv at night or go for a long bike ride and
not suffer, started to feel "normal".

I'm just over a year into therapy. Carbonman's comments about pre-cpap normal including pain and daily fatigue hit home, as does this first description of a "new normal".

Unfortunately, daily cognitive problems and excessive daytime sleepiness started during the Great Crash & Burn of 2010 following my starting therapy in late Sept. 2010. And these problems remain a frequent unwelcome, but no longer daily part of my "new normal."

Right now, roughly 50% of the days I'd be willing to say the BiPAP is working quite well in terms of both objective numbers and in how I feel. Those are the days that I genuinely feel back to normal in the sense of feeling really good, waking up either almost refreshed or genuinely refreshed (in spite of the low "total sleep times" and typical 1--3 wakes) AND I have little or no problems with concentration and excessive daytime sleepies.

On the other 50% of the days? Problems range from somewhat severe (as in I still feel worse than I did pre-CPAP) to annoying enough to know that I don't feel as good as I could and want to feel.

My current goal: Increase the percentage of those really good days. Right now, there are too many days in the second category for me to say xPAP is working any better than "'somewhat effective"
W/a couple of years of therapy, riding 4-5K miles
a year on my bike, playing my guitars again,
being able to remember things and just generally
feeling way better than before therapy, started to feel, "normal".

I still had issues w/waking 3-5 times a night, but therapy was still good,
I figured that this was as good as it gets and must be "normal"..

Wrong again.
Since I started using Dexilant for my stomach problems and
it is working, I no longer wake 3-5 times a night, due to sour stomach, etc.
I am now sleeping 5-7hrs, w/out waking.
I'm now reaching yet another plateau.
I wake refreshed more than ever. More energy....
can that be possible?
Nagging little things like BPH are getting better.
Nagging little injuries...like strained/pulled muscles
heal in a few days instead of weeks.
My general out look on life is improving.
Why? More and better sleep.
So is this the new "normal".

I'm going to accept it as is... and enjoy...
but will continue to see if I can discover how to reach the next plateau.
Why stop now?[/quote]

[jimnsc]

Night and day difference in the way I feel today versus March of this year! Just finished my first six months of treatment last month and wouldn't take anything for the way I feel now. Turned 70 yesterday and feel like I did when I was 60. The wife notes the changes in me and tells me I have my old, peppy walking pace back now. Although APAP has become somewhat routine, I still encounter surprises occasionally (disappointing AHI, excessive leak, etc.).

I had an appointment with my sleep doc yesterday and presented his nurse practitioner with a "last seven day" printout, about which she was very complimentary. She recalled on my first visit that I told her I was committed to making XPAP work for me for two reasons - one being my heart and the other to enjoy all the benefits possible through treating OSA. I took advantage of the conversation to suggest a few things to her. I talked about how much help this forum had been for me and I thought they should encourage newbies to be interested in tracking their progress like I have done form the outset. I added how much I thought they could keep people interested by prescribing whatever they and their patients wanted and/or needed. Knock on wood, I haven't gone back into atrial fibrillation since beginning treatment and I have enjoyed feeling as good as I did when I was a much younger man.

For the last 10 or so years I've had no fewer then five doctors ask if I had ever been tested for OSA but only one (my Cardiologist) followed through and asked me to participate in a sleep study. Thank goodness for this doctor who believes folks prone to A. Fib may avoid future episodes with faithful XPAP treatment. I can't say enough about how effective my treatment has been for me.

P.S. At the time of my post 82% of those polled reported receiving positive benefits from their treatment.

[ameriken]

However, I still wake up still feeling a bit like I've been run over by a truck. It takes me a while to really get going in the morning. I still have yet to experience a time when I can wake up feeling rested and refreshed and ready to take on the challenges of the day. I still need a 30 minute nap sometimes, yesterday it was an hour. I'll have an AHI of 5 on one day, and 16 the next and nothing else has changed from one night to the next. I rarely have an AHI under 5.

Wow this sounds like my case. My AHI fluctuates all over the place from 4.-16. for no apparent reason. However the new memory pillow seems to be making a difference keeping the numbers lower than they were. My RRT lady doesn't want to change anything on my ASV and admits she's nervous because it's a complicated machine, so she now has put in a referral to a the sleep Dr. This is a long haul for some of us I think, but I'm trying to keep a positive attitude, and keeping at it. I do feel at least 60% better than I did before, and hope it will improve if things can get dialed in better.

Hey Kody, wow is right. I'm intrigued that you're experiencing the same issues, we're both the same age and have the same machine. What is the cause of your breathing problems? They tell me that my use of methadone for severe back pain is contributing to the breathing issues as I have mostly centrals and 'hypoventilation' and little or no obstructives. I'm just curious what is at the root of your own issues.

[jabman]

I choose the second option. Al though My therpy for the most part is excelent I every once in a while find my self falling asleep at my work desk though it is uncommon. I am also still forgetful at times though not as bad as before therapy. I am only 40 so can't contribute it to getting older yet.