Need some more of your good advice please

Carlton · Post by **Carlton** » Sun Sep 18, 2005 6:34 am

I posted last week to say I was about to start CPAP and got some great advice on machines masks etc. Unfortunately my choice of machine was down to one on the day (things a bit behind here in England) but managed to get the Swift Nasal Pillows System Mask that was strongly recomended.

Anyway good news is I started on Wed and mask has been working fine, 7+ hours sleep per night and apart from a bit of a sore nose very little problems.

Question 1 The machine is a REMstar auto CPAP System that has a Smart Card. Is there anyway I can read the data off the card myself from home on a PC and if needed can I change pressure range myself?

Question 2 Been feeling pretty strange since starting therapy, more energy for sure but not a good energy more like a caffine overdose, head spinning, nervy and a bit anxious. Did anyone else get this and is it normal?

Hope someone can help out

All the best

ozij · Post by **ozij** » Sun Sep 18, 2005 7:01 am

Question 1 The machine is a REMstar auto CPAP System that has a Smart Card. Is there anyway I can read the data off the card myself from home on a PC and if needed can I change pressure range myself?

A definite yes to both of these questions

You will need to buy:
* Software - called Encore Pro, can be ordered from our the hosts of this forum - https://www.cpap.com

* Smart Card Reader: click on the dark blue text -->Cheaper Reader This post, by Tridens will tell you how to order the OEM (original equipment manufacturer) reader.

O.

sir_cumference · Post by **sir_cumference** » Sun Sep 18, 2005 7:45 am

I live near a village called Carlton - Yorkshire!

Welcome to the site and to the world of CPAP. You need to give it a while before you can really get a handle on what's happening to you. I found it tool quite a while before the oddness of the whole thing started to fade into the background and I could judge how I was really feeling.

I can't give much advice about what you're talking about, only to say that having any energy at all after a prolonged period of not having any may feel unusual. However, what you may be feeling is the first symptoms of your body batteries starting to recharge again. As I said - give it time

sir_cumference

Sleepless on LI · Post by **Sleepless on LI** » Sun Sep 18, 2005 10:42 am

Carlton,

Welcome. Maybe what you're feeling has something to do with oxygenation. You are finally getting oxygen while you sleep and maybe it's like a "rush" to your system. I would make sure I'd mention it to my doctor, just to be safe, because it may have nothing to do with the therapy at all and may be something even as simple as an inner ear infection that may need to be addressed medically. But the new found energy you're feeling, I would be safe, I think, in saying is coming from your therapy.

Best of luck.

Carlton · Post by **Carlton** » Sun Sep 18, 2005 11:37 am

Pretty sure it is the therapy this feeling started after first nights use. Very similar to the feeling many people get during first few weeks of use with anti depressants. Was wondering if many people experiance this and if so how long before it goes?

dsm · Post by **dsm** » Sun Sep 18, 2005 4:18 pm

Carlton,

My initial reaction to therapy was a 'cpapers high' - hardly sleep, was up early & into things - was 'super alert' - then after several weeks it has settled back down to what I now think is 'normal' that is, getting good nights sleep (unless I experiment & mess up such as trying new masks & devices etc:) - not tired during the day (am actually back to doing gardening with my wife - work is good (I can keep on top of it).

Anyway, what you are describing seems to relate to your own way of reacting to particular stimulus & your comment re anxiety is interesting as it appears to be related to your earlier comments re waking up in a state of stress.

Everyone has a particular way of reacting to significantly changed circumstances. You are learning something of your own way of reacting. The early days os CPAP do appear to exaggerate our reactions.

Anyway, glad you are fitted up with such a good cpap config. Many would envy that as an only choice.

Cheers

DSM

Jan in Colo. · Post by **Jan in Colo.** » Sun Sep 18, 2005 11:18 pm

I've had that goofy feeling every once in a while. A week ago, I woke up feeling alert and buzzy and it was definitely a weird feeling. Felt like I was on diet drugs or something. I actually had trouble functioning, I was so alert. Noticed too much activity around me, too many things going on, had trouble driving and keeping my eyes on the road...Kind of ADD like, I guess. I just felt weird all day. But ALERT....oh my was I ever ALERT.

I've not had that EVERY day, just once in a while since....I'm assuming we'll get past that and into normal again soon...

Jan in Colo.

Carlton · Post by **Carlton** » Mon Sep 19, 2005 5:51 am

Yeah feelings pretty much as Jan describes. Still got it today but not quite so bad.

rested gal · Post by **rested gal** » Mon Sep 19, 2005 6:42 am

Question 1 The machine is a REMstar auto CPAP System that has a Smart Card. Is there anyway I can read the data off the card myself from home on a PC and if needed can I change pressure range myself?

Carlton, ozij told you right about what you'd need to read the Smart Card. As for the last part of your question, you don't have to have software to change the pressure range yourself. That can be done through the buttons on top, if you know the sequence of things to unplug/plug/push. However, it's best not to go changing things without checking with your doctor, or at the very least having the software to see what's going on in your treatment.

Sounds like you're taking to the treatment very well since you're able to sleep with your Swift on for 7+ hours at a time. That's great!

You were lucky that if they had only one machine to offer you, it was an autopap! Most people have to beg, wheedle, cajole, or threaten to quit, to get their doctor or DME to let them have an autopap instead of a straight cpap from the start.

Carlton · Post by **Carlton** » Mon Sep 19, 2005 10:17 am

Rested Gal,

Thanks for the advice, not planning on messing with pressures ect just yet, i just like to know whats going on with treatment and how it works, have ordered software and card reader i'm just one of those people thats likes to have a little knowledge and control over their own health, something i've learned from experiance.

As for the machine sounds better deal than it was, health care here in the UK is free but not up to the standard of US when you have insurance. Bit behind on sleep disorder. So had to pay private whole thing sleep study ect cost me over the equivalent of $4000 US. But happy with machine anyway and mask good chosen on advice from this forum.

You people been great Thanks V Much

WAFlowers · Post by **WAFlowers** » Tue Sep 20, 2005 8:03 am

"cpapers high"? Oh yeah! I can relate to that.

Discussing it with my doc he said it does happen and believes it is related to REM rebound. He may be right or maybe it is just the oxygenation or a combination of things.

Weird thing happened last night. I got to bed quite late (wife and I attending a bible study on Revelation on Mondays, plus all the premieres this week we're capturing on the DVR) -- Leno's monologue had already started so it had to be 11:40 or so when I fell asleep -- and woke up on my own at 5:21! That is really frustrating as I could have slept a few more minutes before the alarm went off at 5:30.

But I feel good, really good, as if I'd had much more sleep than that. I haven't felt quite this good since the first week or two. Last week the treatment wasn't as effective, but I found that I had some significant leaks. Even my wife was complaining of the noise. So I readjusted the straps of the Swift and ... voila ... leaks gone and sleeping great again .

Sleepless on LI · Post by **Sleepless on LI** » Tue Sep 20, 2005 8:17 am

Bill,

What I would give for six straight hours of sleep. I never sleep that long without waking up. I have certain set times, it seems, during the night that I wake up. And I ALWAYS, no matter what mask I wear, seem to wake up for a second or two when I switch positions. I think it's now built in to do that, like when my kids were babies and I slept much more lightly so that I could hear them if they needed me. I wish I could turn the switch off and just let whatever happens happen, but there I am, awake at every repositioning during the night. I like those nights where I feel extra tired because I'm less likely to toss and turn. Last night, I was very tired and slept from about 10:40 to 1:30 for my first shift. Then I went to 5:40. It's almost like I can't go past 3-4 hours without either repositioning or waking up for some reason. If I ever sleep six or more hours, I can't even imagine how I'll feel.

But, like I always say, I'll take this type of awakenings over the pre-CPAP all night long tossing and turnings and wake ups without ever feeling energetic and without fatigue when I'd wake up for the day (and of course it would last the whole day). So I guess we have to accept certain not so perfect things as long as we feel good.

WAFlowers · Post by **WAFlowers** » Tue Sep 20, 2005 11:30 am

Sleepless on LI wrote:I think it's now built in to do that, like when my kids were babies and I slept much more lightly so that I could hear them if they needed me.

Despite being a man (regardless of what Rested Gal thinks ) I do know what you mean. When our two were babies I was the one who'd get up in the middle of the night, change them, bring them to my wife for their feeding, then burp them and put them back to bed. Some nights my wife wouldn't even really wake up but feed them in her sleep!

If I ever sleep six or more hours, I can't even imagine how I'll feel.

Actually on Friday and Saturday I slept so soundly that I woke up in the same position I fell asleep in the night before, and I have reason to believe I didn't move all night. Both mornings I woke up with my lower back in spasms which happens only when I don't move enough. OW!

But, like I always say, I'll take this type of awakenings over the pre-CPAP all night long tossing and turnings and wake ups without ever feeling energetic and without fatigue when I'd wake up for the day (and of course it would last the whole day). So I guess we have to accept certain not so perfect things as long as we feel good.

Almost anything is better than the pre-CPAP feeling! I'll even put up with the occasional super-deep sleeps followed by back spasms .

Sleepless on LI · Post by **Sleepless on LI** » Tue Sep 20, 2005 12:08 pm

I'll even put up with the occasional super-deep sleeps followed by back spasms

I just wish I knew how that felt...even once ?

Carlton · Post by **Carlton** » Tue Sep 20, 2005 1:13 pm

Well day six on the CPAP now and adjusted to mask and machine better than i expected. Nose a bit sore still and have woken a couple of times when machine has been on high pressure.
Still feeling worse than when i started though. Was on anti "D"'s a while back and what I'm feeling now is exactly the same as the first month on them- sore lower legs, fuzzy headed and a bit jittery. Wondering if it's just coincidence that having the same reaction to CPAP. Hoping it will settle down.