am I getting better ? am I getting worse ? - how do we tell

dsm · Post by **dsm** » Tue Aug 23, 2005 3:30 am

I have started this thread after Lori & I got into a chat on the topic (more or less) of feeling worse/ feeling better how do we know which it is. Because this was in someone else's thread and because it really is an interesting topic, I figured it was better to start a new thread for it.

In the exchange with Lori I had said how I was wondering if the benefits of CPAP were evaporating. I wasn't feeling quite the zing of the 1st 4-8 weeks. Lori commented that she had heard other comments from people about a downturn in the good feeling that seemed to accompany the early weeks of xPAP. Last night I even bumped up my pressure to 16cms & CPAP mode just to see if I wasn't getting the open airways I was expecting.

I had had a couple of afternoons where I had started to feel really drowsy in the afternoon. On discussion with my wife she pointed out that the room I was in when the drowsiness happened was an enclosed room with inadequate aircon & too much computer gear & in fact it was about 10 degrees F hotter that the rest of the office. IN fact this was right, if I came out of that room I was ok.

So the questions I am posing is ...

Q1 Do some of us think we are getting worse again when in fact everything is ok

Q2 Is there such a things as 'xAPers high' - feeling euphoric in the early days ?

Q3 How can we tell if we are improving when we may think we are not ?

Cheers

DSM

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yawn · Post by **yawn** » Tue Aug 23, 2005 6:53 am

I've been on CPAP for 6 or 7 weeks now and am very disappointed that I still don't feel that much better. I'm still very tired and fatigued. I will say that I think I'm less sleepy but still more sleepy than I was hoping for. I still take Provigil every morning and drink a fair amount of caffeine to get through the day. I'm still waiting for the "high" others experience.
Amy

limpy · Post by **limpy** » Tue Aug 23, 2005 6:59 am

Are either of you tracking the results of your treatment with software?

Sleepless on LI · Post by **Sleepless on LI** » Tue Aug 23, 2005 8:38 am

Being mentioned twice in that post of DSM's, had to reply:

Q1 Do some of us think we are getting worse again when in fact everything is ok ?

I personally don't feel I'm reverting at all. I feel absolutely great. Of course there are days when I'm not as energetic because I might have had a bad night, but that's life. Nothing is a constant, including our nightly sleeping habits. Wouldn't it be great if they could be consistently wonderful? But that being the case, that they're not, for the most part, I feel 99.9% better every day. Guess I'm one of the fortunate ones, SO FAR.

Q2 Is there such a things as 'xAPers high' - feeling euphoric in the early days ?

I would imagine that in the beginning, you could describe it as a "high," just to start feeling better after being a walking zombie for so long. The first morning I realized, and I mean outright realized, I felt good was the highest I think I've ever felt in my life, short of delivering my three children. But I think that's normal to feel euphoric when you finally start to shed the fatigue, exhaustion and start feeling like your old self again for the first time. I'd say "Yes" to that question.

Q3 How can we tell if we are improving when we may think we are not ?

Software, baby, software. I cannot imagine being on xpap without it. All the weeks I didn't have it were sleepwalking. You don't have any clue about what you're doing while you're asleep unless someone watches you all night and tells you, "You stopped breathing twice and..." And even they can't tell you about your flow limitations or leak rate, etc. That or another PSG, I would think, is the only conclusive way to tell if you're condition has improved or worsened.

DMS, what do you think???

Haku · Post by **Haku** » Tue Aug 23, 2005 9:02 am

Do you have to have an Auto CPAP to use software to monitor you machine?

I have the ResMed VIII bipap type machine and did not see any software for it, what do you suggest?

Sleepless on LI · Post by **Sleepless on LI** » Tue Aug 23, 2005 9:06 am

Haku,

If your machine doesn't have the software capabilities, you either don't use software or you can get one that does. As far as I know, there is no way to turn it into one that can use software. Sorry.

ozij · Post by **ozij** » Tue Aug 23, 2005 9:35 am

Resmed's software is called AutoScan.
According to the VPAP III's page in Resmed's site, it is AutoScan compatible.

You can by the software from our hosts, cpap.com Here are its details

I looked for the vpap iii and then for software at http://www.resmed.com - found the name for the software, which I didn't remember.

I looked for Autoscan at https://www.cpap.com

Really very simple.
O.

Sleepless on LI · Post by **Sleepless on LI** » Tue Aug 23, 2005 10:08 am

Totally misread the intent of Haku's post. I thought he was trying to get software for a machine that didn't come prepared to use it.

Haku, I assure you, I am trying to remove my foot from my mouth as I type this apology, but it would be easier if I could use both hands. So I'll cut this short to accomplish that and extend an apology for giving such a poor reply to you post. I hope four s covered it.

WAFlowers · Post by **WAFlowers** » Tue Aug 23, 2005 10:21 am

dsm wrote:Q2 Is there such a things as 'xAPers high' - feeling euphoric in the early days ?

Yes, absolutely.

I just came from my 3 week followup with my sleepy doc and, by coincidence, we were discussing this very thing. He indicated it is a side-effect of REM rebound and will fade with time.

If we want to recapture the feeling, just do without xPAP therapy for a while then start up again.

Q3 How can we tell if we are improving when we may think we are not ?

The only way to really be sure is another PSG. Just looking at the AHI numbers our machines report (some of them, anyway) doesn't tell the full story. You also need to know what stage of sleep you are in, your O2 sat numbers, whether your sleep architecture is disturbed and so on.

ozij · Post by **ozij** » Tue Aug 23, 2005 12:15 pm

Q3 How can we tell if we are improving when we may think we are not ?

Blood pressure not so high?
Less water retention?

O.

dsm · Post by **dsm** » Tue Aug 23, 2005 2:41 pm

Sleepless on LI wrote: Software, baby, software. I cannot imagine being on xpap without it. All the weeks I didn't have it were sleepwalking. You don't have any clue about what you're doing while you're asleep unless someone watches you all night and tells you, "You stopped breathing twice and..." And even they can't tell you about your flow limitations or leak rate, etc. That or another PSG, I would think, is the only conclusive way to tell if you're condition has improved or worsened.

DMS, what do you think???

Lori & others,
Thanks for the replies - interesting comments.

Lori re software, I was originally very keen to obtain the software & reader etc: but discovered that the sleep clinic (Mayo Clinic) I was participating in a 4 week study with, couldn't read any of my cards from my RemStar. They sent me replacement cards but none worked. I then decided to wait until I could find a way to prove if the machine has a problem. If it does then the money spent on software would be a waste. I also have an S8 & will try that soon. It has a reader & I may end up getting the software for it.

In summary, I gather from enough folk here that being able to see output from their machines does make a big difference in understanding how things are going.

Cheers

DSM

MaskedMan · Post by **MaskedMan** » Tue Aug 23, 2005 4:03 pm

I definately agree that having the data is necessary to figuring out what is going on. Perhaps sometimes we just have bad nights that isn't related to OSA.

My first 8 months of CPAP I felt better than pre-CPAP. Dunno if I'd say I felt great because I'm not sure I know how you should really feel when waking up anymore. It was a night and difference from pre-CPAP for me though. The next few months I was feeling tired and drowsy all the time again. Having no idea what would be causing that, I changed masks, replaced masks, new seals, etc. No real effect and I had not information to make an educated choices on so I got myself an APAP. THe first few nights on it and I was feeling better again. It showed I was rarely at my prescribed level of 10 though - I was always 12-14. It seems like that may have been my issue.

However, today, I woke up very tired and with a headache. I did nothing differently, went to bed at around the same time, same mask, machine, same wake-up, etc. My data shows only 1 apnea (low for me) and 11 hypos (highest for me in a few nights) - neither seems high enough that I shouldn't feel just like the previous few days. Yet for whatever reason, I an tired with a headache all day today so far. However, still feel better than pre-CPAP. I'll have to see what goes in with my data in coming days, but at least right now, it seems my crummy day today is not related to OSA.

Sleepless on LI · Post by **Sleepless on LI** » Tue Aug 23, 2005 4:38 pm

DSM.

I think the greatest thing about having the software is being able to visualize how you are doing from one night to the next and then being able to make intelligent changes in your settings to accommodate for whatever is happening. If you don't know what is going on every night, it's like a roll of the dice for the entire time you are between sleep studies. Yes, you can tell how you're feeling and it should be an indication that things are improving hopefully. But with the software, you know every morning just how many episodes you had the night before, what your leak rate is, and it gives you the option to change your pressure, etc. to better suit your needs.

I am definitely pro-software and would never consider another machine in the future that didn't have that capability. It was well worth the extra money to buy the software and card reader. I think all machines should have it included, but then that would put some sleep doctors out of business because the informed patient could manage their own care. So this is something that probably will never happen.

th · Post by th » Tue Aug 23, 2005 5:08 pm

I hate to post this but I have seen this with my wife my father and my mother-in-law. All 3 of them nap without there CPAP(long naps) All 3 said "are you sure you have to use your cpap when you nap,the doctor did not mentioned that " . Like other's posted here.......the software and the reader is a must
th

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WAFlowers · Post by **WAFlowers** » Tue Aug 23, 2005 7:08 pm

I was told to use it when I sleep. A nap is a short sleep. End of story.

am I getting better ? am I getting worse ? - how do we tell

am I getting better ? am I getting worse ? - how do we tell

Re: am I getting better ? am I getting worse ? - how do we t