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Still tired after a year...
#11
(01-26-2014, 10:33 PM)Luke Warm Wrote: On a previous occasion I have submitted private message to someone expressing similar comments as yours. From personal experience, I've been on a CPAP for a tad less than two years.

I suspect my CPAP has provided some measure of boosting my energy, but in my case, reducing the amount of a certain medication I am on paid dividends (a blood pressure med called Atenolol) and my doctor also did a bloodwork on me and decided to have me try Androgel at around the same time due to low "T" as the buzz is these days.

I was at a point in my fatigue that if I walked out my backyard 200 feet to an airplane hanger I have on my ranch, I didn't know once when I got there if I would have the energy to walk back (it was that "bad") In fact, that level of fatigue (and I knew it wasn't a form of tiredness) was a very black and dark and depressing time for me. I was taking three naps per day!

I'd suggest seeing a doctor and reviewing your meds and/or asking if some blood tests might be conducted to get at the bottom of your predicament.

I'm now very rarely taking a nap, and at age 62 and having multiple sclerosis, I walk anywhere from 5 to 8 miles per day and I feel pretty good for an old goat rancher... so good in fact I might challenge Arnold Swartz-a-burger for an arm "rasslin" competition (and I have bursitis in both shoulders!)

I was tested for testosterone and if memory serves me right I was somewhat low but still in the 'normal' range, I have a physical coming up and that is actually on the top of my list of things I would like to try or at least have him really look into.
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#12
If your DME / doctor takes readings from your machine, they will know you have changed settings -- so might be a good idea to let them know before hand to prevent an awkward conversation later.

But, yeah, I agree with others that it doesn't make much sense to keep an auto-capable machine in CPAP mode.
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#13
(01-26-2014, 10:48 PM)c0reDump Wrote: If your DME / doctor takes readings from your machine, they will know you have changed settings -- so might be a good idea to let them know before hand to prevent an awkward conversation later.

But, yeah, I agree with others that it doesn't make much sense to keep an auto-capable machine in CPAP mode.

I changed my s9 to auto, low 9(my script) and high of 20, so we shall see!

I'm usually upfront with them when I try stuff on my own so i'm sure I will mention it, I also own the machine so i'm not too worries about it.
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#14
(01-26-2014, 10:06 PM)gilligan Wrote:
(01-26-2014, 10:00 PM)Peter_C Wrote: Seeing the sleep Doc is a great thought. I am wondering (if your model allows it) about putting it in 'auto' mode, with a MIN of 7 and a MAX of 20 and then follow it with the software for a week or three? The results may surprise you.

That said, when I first started with my dream machine, the Doc only had the sleep study and what I said about my sleep to guide him (no data from the machine back then), and a lot of his choices were heavily dependent on me, and what I said. If I didn't mind the pressure, but I wasn't feeling *great* in the morning, he'd raise my pressure - it took about 6-7 months of regular visits til we got it where we both were happy.

With the ability of the 'auto' function, most of the dial-in can be done by the machine now.

I was curious about trying the autoset mode on my s9, I was also thinking of trying to raise my pressure a bit just to see what happens since I wasnt sure if going from CPAP to APAP would be a good idea or not.

If your machine is capable, to my knowledge, there is no downside in going to 'auto' mode. I've been on a dream machine for many years, and my last study was some time ago,and was then put on a bi-level with fixed settings. After going into 'auto' mode while keeping my settings (basically just allows it to go higher if the machine thinks it is needed, I found that I do better, and my O2 levels are better with a slight raise to both the EPAP and PS settings. The biggie for me was realizing that my leak rate was too high, and getting that under control has been a big help to me.

So if your leak rate is good, about the only other thing (machine-wise) is if the settings are off a bit. But you gotta actually pull the data and learn to understand it (not just the LCD screen) and then watch it for a month or two (not a day or three - you need to see trends).

Another check you may wish to consider is a recording Oximeter (I have and use a CMS50F) - you can get a good wrist mounted unit with rechargeable battery and software for around $100 bucks or so.

O2 levels that are too low, or too high can also cause issues. I have lung scarring due to PEs, so low O2 levels (average of 82-84 nightly) needed to come up a bit. But newer studies have shown that too high an average is just as bad (above 96-98 - at night).

Stuff to consider. Just remember, before changing anything, rite down all the settings, and their values, so if desired, you can change them back.
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#15
(01-26-2014, 10:48 PM)c0reDump Wrote: If your DME / doctor takes readings from your machine, they will know you have changed settings -- so might be a good idea to let them know before hand to prevent an awkward conversation later.

But, yeah, I agree with others that it doesn't make much sense to keep an auto-capable machine in CPAP mode.

Only my opinion here, but there is no law against you modifying the settings on your own machine, and if my sleep Doc took issue, in my book it would be time for a new Doc. I can see the argument about only having one cook in the kitchen at a time, and that's what you're doing - being the cook. Now if/when you decide to go back to the sleep doc, it's only reasonable that while actively under his care, you shouldn't change stuff without discussion.

Please remember, give it at least 4-7 days, between any changes.
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#16
(01-26-2014, 11:13 PM)gilligan Wrote: I changed my s9 to auto, low 9(my script) and high of 20, so we shall see!
Whats the model of your S9, model name printed next on/off button


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#17
(01-27-2014, 12:48 AM)zonk Wrote:
(01-26-2014, 11:13 PM)gilligan Wrote: I changed my s9 to auto, low 9(my script) and high of 20, so we shall see!
Whats the model of your S9, model name printed next on/off button

autoset EPR
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#18
I can't offer any solutions or ideas, just commiseration. I've been on CPAP for about 3 months, and while I know it can take awhile, I'm still tired every day.
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#19
(01-27-2014, 08:31 AM)SabrinaFaire Wrote: I can't offer any solutions or ideas, just commiseration. I've been on CPAP for about 3 months, and while I know it can take awhile, I'm still tired every day.

It takes time to heal what needs to be healed. Hopefully you are able to watch your data to see if there is a trend that may be adding to the tiredness.

Is your sleep fragmented?

What about sleep hygiene?

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#20
(01-27-2014, 08:36 AM)me50 Wrote:
(01-27-2014, 08:31 AM)SabrinaFaire Wrote: I can't offer any solutions or ideas, just commiseration. I've been on CPAP for about 3 months, and while I know it can take awhile, I'm still tired every day.

It takes time to heal what needs to be healed. Hopefully you are able to watch your data to see if there is a trend that may be adding to the tiredness.

Is your sleep fragmented?

What about sleep hygiene?

I wake up a lot if that's what you mean. As for sleep hygiene, I do sometimes take naps, but I can't always help it, if I'm about to fall over, I'm about to fall over. And sometimes I fall asleep on the couch watching TV in the evening.
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