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

[WearyOne]

I'm two years on cpap and still waiting. I'm just as sleepy when I wake up now (and throughout the day) as I was before cpap. Now, if you're talking about feeling better as far as no headaches, no racing heart, etc., then yes, that's all gone. But, if you're talking about feeling rested and refreshed? I'd have to say, what's that?

Pam

[SharkBait]

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 honestly think for most of those who say the benefits subsided that it's all relative...

[SleepyRose]

Still waiting for the bright eyed and bushy tailed thing. Im more tired now than I was before.
On the up side, no more gasping for air, no more peeing 100 times a night and for the first time in my life I can sleep all nite.

[Sleepy Boy]

I don't know if this will help anyone or not. When I get out and walk or do anything physical, I feel so much better. We live in Northern Michigan, and the winter( along with my wife getting heart surgery) has kept me inside a lot. Today I was back in the woods cutting firewood for next winter, I worked about 3 hrs. and felt better than I have in months. It seems for me- that exercise makes all the difference in my mood and how I feel..Thanks, Larry...

[dsm]

I don't know if this will help anyone or not. When I get out and walk or do anything physical, I feel so much better. We live in Northern Michigan, and the winter( along with my wife getting heart surgery) has kept me inside a lot. Today I was back in the woods cutting firewood for next winter, I worked about 3 hrs. and felt better than I have in months. It seems for me- that exercise makes all the difference in my mood and how I feel..Thanks, Larry...

Absolutely, I know that physical exercise greatly improves daytime well being. But have also experienced periods where sleep went downhill 7 the will to exercise went downhill as well. Am still trying to understand the implications but do think it is all OSA related.

Am in a very good exercise phase at the moment & have taken up cycling 16 kms to work each day to reinforce it. Began working on a committed program of exercise in Nov last year. If I can sustain this for 12 months & daytime drowsiness doesn't return, then will consider I have the right mix of xPAP therapy & exercise.

DSM

[Nekalbustriusis]

People who felt the benefits slide away are just slightly ahead of those who have stayed feeling good. I'd like to learn more about this. How many people felt absolutly fantastic at first and then settled down to "Normal" or "Better than before treatment"? Do the ones who feel just as good as when they started treatment feel really wonderful or just better than they did before? I'd lke to know if that initial great feeling is recoverable or is it just an effect of extra oxygen on too much hemoglobin?

[kebsa]

I am still really new to all this and maybe i had unrelaistic expectations or its just too soon to feel the full benefits. The first machine i tried was the respironics SV and i did feel better than i had without the machine but my figures were awful- (AHI between 94 and 104), i sort fo convinced mysefl that perhaps while the number of events were higher that maybe they were not as severe as with no machine and hence i wtill felt a bit better. but before long i was back to feeling really exhausted even first thing in the morning! having reall problems getting up in the morning, having major difficulty in managing self care full stop.

i switched to the resmed SV a few weeks back and i have no problem with compliance and my figures are great (ahi of 0.4 and ai of 0) and i still feel better than with no machine but in the first week i was waking in the morning actually feeling rested whereas now i am abck to feeling pretty naff in the morning. Now i do realize that multiple sclerosis complicates things somewhat for me as fatigue is known to be a big issue with MS. I have just had a really bad year with multiple relapses of my MS and spent over half the year in hospital- MS is degenerative and the toll it has taken this year is significant- i have applied for assistance with personal care, meal preperation etc etc only to be told there is no funding left and i have been placed on the department of healths unmet needs list. So i guess i can't blame xpap on the way i feel, it is far more likely that if i were not treating the sleep apnea,i could very well be feeling much worse than i do now- at least that is what i am leaning towards at the moment- i am eagerly waiting to see what can be done to get some home support- bein completely dependant on an electric wheelchair for mobility and have had a significant progression of my disease, managing at home with only one hours domestic help per month (they mop the floors and change the sheets- i have to manage everythng else) i am tending to blame the fact that i do not feel as good as i did when i first tried xpap on progression of the ms and lack or home support- it is highly likely that without the bebfits of the xpap i would be feeling even further behind the eigt ball but that is a theory i do not want to test!

Realsitically speaking i cannot expect to feel dramatically improved so early in treatment when sleep apnea had been severe for ages from what it seems and with oxygen levels dropping down to the low 50's 52% was the actual figure from memory- when i found that out it scared me - my sleep patterns have been warped by shifft work and health issues and years of poor sleep structure- i keep telling myself i can't in all honesty expect to feel magically restored so early in the piece s0 i have decided that if i have periods where i feel really good, take it and do not question it to much, if i feel ropey, tired and washed out despite playing the game as i should i can kee telling myself that its going to be a litle bit at a time over a long period- doing it that way, small changes at a timehas to be a positive- doesn't it??!!??

[tillymarigold]

I've been on CPAP not quite 2 years and in the last few months I've changed machines (old machine broke so first I had a loaner and then a new machine, upgraded to the Sandman Auto after the 420E broke) and since then I've been more tired, but I've also been under a lot of stress so I wasn't sure what was what. But this morning I woke up at 6:30 feeling absolutely amazing, better than I have in months! And this seemed like a good place to share.

[sagesteve]

OutaSync...I think you should seriously look at your thyroid. Even if your numbers come back from your blood test as "within range", with these thyroid tests, it usually isn't! My wife and I just started this one month ago and we both feel FANTASTIC. There is an instant result with this Iosol Iodine. Also my AHI number is down to .04 now and we both sleep straight through with 7 hours sleep.Take a look: http://www.wellnessresources.com/produc ... iodine.php Hope this helps.

[OutaSync]

sagesteve,

My thyroid tests were within "normal" range according to my lab report

TSH 1.820 uIU/mL
T4 9.2 ug/DL
T3 Uptake 30%
Free Thyroxine Index 2.8
Triiodothyronine (T3) 134 ng/dL

How would one know if it is safe to take that iodine supplement?

[dsm]

People who felt the benefits slide away are just slightly ahead of those who have stayed feeling good. I'd like to learn more about this. How many people felt absolutly fantastic at first and then settled down to "Normal" or "Better than before treatment"? Do the ones who feel just as good as when they started treatment feel really wonderful or just better than they did before? I'd lke to know if that initial great feeling is recoverable or is it just an effect of extra oxygen on too much hemoglobin?

I am also interested in why the 1st few weeks were such a 'rush' - as mentione thoigh, in my case I went on 15 cmH2o but was supposed to have been told to go on 13 cmH2o.

I have an oxygen concentrator that I plan to use in some controlled experiments along with an SpO2 recorder & detailed data off a Reslink. Am looking to seeif small amounts of oxygen included in the airflow can cause any variation to the daytimes. Just need to monitor any side effects (excessive co2 build up or washout).

Also for general feedback I might refine this poll & any suggested new sets of questions are welcome.

Cheers

DSM

[sagesteve]

OutaSync--Read the site. It is safe and extremely beneficial. It can't hurt! ANNNND I think it will help. My range was in the "normal range" for years but I was always suspect as I became older...I was right! Even with the CPAP after about 6 months I was still falling asleep on the couch in the afternoon. I started taking this and BINGO!! If you want that energy and to feel better, you should be in the UPPER end of the range, just like when you were younger ( we begin to age at age 27!!). I really think you will feel better...like I say, it can't hurt ( because this is a special iodine, not like what you get from some other vendors and SURE not what is coming in MOST vitamins!!!!!). Really look the site over because women fall into this "thyroid" thing pretty much.

[sagesteve]

dsm...I use the oxygen 2 litre bleed every night ( I'm a mile up here in Prescott Arizona). I can really tell the difference. I've tried sleeping with it off and I sure don't feel as well AND my numbers begin to go up!! Right now I'm at AHI 0.04. I started a year ago at AHI 17.0

[dsm]

dsm...I use the oxygen 2 litre bleed every night ( I'm a mile up here in Prescott Arizona). I can really tell the difference. I've tried sleeping with it off and I sure don't feel as well AND my numbers begin to go up!! Right now I'm at AHI 0.04. I started a year ago at AHI 17.0

Steve,

Interesting info - 2lpm is a fairly good supply. Do you monitor with an SpO2 recorder ? - am interested what your SpO2 % looks like.

Cheers & thanks

DSM

PS are you otherwise healthy (no COPD or other respiratory ailments ? ) Tks D

[sagesteve]

dsm...I use a Fingertip Pulse Oximeter. Halfway through the night I will sometimes take a reading. I run 95-96%. During the day OFF cpap I run 97%-98%. Being a mile up and having asthma, I need all the air I can get!! During my sleep study last year I was as low as 75% and had an average of about 85%...pretty bad. I've cleared up my asthma by drinking goats milk! It really worked. It was so bad last year that we said we would move if it was as bad this year...we're staying! Numbers are coming down, weight is dropping off, sleeping straight through the night...everything is falling into place. Giving the old thyroid a boost with a supplement has helped a lot too.