Tired after new machine?

MitzyG · Post by **MitzyG** » Wed Dec 25, 2013 2:20 pm

Hi...short background - I got my first CPAP approx 5 wks ago (let's call him Machine #1). This one was a cheap brick, was set to 11 and I kept swallowing air and I felt miserable. I did sleep most of the night, but it was miserable. Dr refused to believe me, claimed that I was doing well on the machine, even though I was miserable. I took it back, insisted on a new one. They didn't have my coveted ResMed S9 Autoset, so they loaned me a Philips Respironics auto machine (let's call him Machine #2). Note that I didn't check the settings closely on Machine #2. I had that one for nearly 3 wks while they got my autoset. Yes, I stressed out alot trying to get my autoset, finally got a BRAND new 0 hr machine with latest firmware (let's call the ResMed Machine #3).

So, Machine #3 has been here at my house for 2 days. I've had two nights with it. AHI was 1.56 2 nights ago, and 2.26 last night and last night there was 1 snore recorded. Interesting...Machine #3's range is 5-9. I believe that my 95% on Machine #2 was approx 8-9.

On Machine #2, I was starting to feel better. On Machine 3 (admittedly only 2 days), I've been feeling exhausted. Machine 3 feels as "comfortable" as Machine #2...no problems breathing, when I wake up, I feel like there's no mask on, but it IS on. Breathing is so natural that I have to check the exhaust to see if it's really blowing any air. Except for fatigue, both machines "feel" the same.

Is it natural to go through peaks and valleys of fatigue when getting used to CPAP? The first one made me feel worse...so it wouldn't surprise me if #2 was just "so much better" compared to that. But it's surprising to me that while I'm on vacation, relatively low stress, not going to work etc, I'm feeling so tired. I even went to bed early last night and I STILL feel tired.

Chiefswife · Post by **Chiefswife** » Wed Dec 25, 2013 3:13 pm

I know for me (not speaking for anyone else because I am a new user as well) I am still tired on some days after almost 2 weeks. I have just changed masks from the Mirage FX for her to the Swift FX for her and that seems to be helping. I must say that although I am tired, I am not falling asleep in my chair when I sit down to watch TV and that even if I were to take a nap, I haven't been able to. :c) Sorry that didn't probably help you. :c(

Julie · Post by **Julie** » Wed Dec 25, 2013 3:19 pm

Any chance you could be losing Cpap air to the breeze if your mouth falls open when you're asleep? If so you might want to test it by taping or using a chin strap, and if you feel better with those, then consider getting a full face mask.

MitzyG · Post by **MitzyG** » Wed Dec 25, 2013 4:51 pm

Wouldn't there be leak or some other "data" that would indicate that my mouth is open? When I had Machine #1, I woke up with my mouth open and air rushing out...I felt like a human A/C! So I thought I would know if my mouth was open... Is it possible to sleep soundly with my mouth open and not know it? (I'm really asking, not being a smart alec)

Julie · Post by **Julie** » Wed Dec 25, 2013 7:49 pm

If a leak is large enough (quite large) it won't register at all on the machine... and you can test if it happens by one of three things - try taping your lips for a few nights (it's standard practice, not some barbaric thing using either 3M micropore tape from the drugstore, or blue 'painters' tape (they come off easily). You could try a chinstrap, though they're not as effective because while your jaw might be more closed than open, your lips can still let out lots of air. The ideal thing is a full face mask, and if you can get one or two on trial for a few nights it would tell you for sure if that's what is happening.

Rick007 · Post by **Rick007** » Wed Dec 25, 2013 9:18 pm

MitzyG wrote:Is it natural to go through peaks and valleys of fatigue when getting used to CPAP?

In my case I just reached the 90 day point on CPAP therapy. My symptoms before CPAP were extreme brain fog and confusion. Sometimes I lost track of where I was for a while. The one symptom I didn't have was daytime fatigue. I couldn't sleep during the day even if I laid down in a quiet dark room and tried. After the first month the brain fog began to lift a little each day. At the same time I began to get more drowsy throughout the day. I have to set my alarm each morning to limit my sleep to 8.5 hours. After 90 days on the machine I am more tired during the day than I have ever been in my life.

I read another thread in the forum where another member reported a similar extreme fatigue.

So although I can't answer your question "is it natural", I can tell you that you don't seem to be the only one experiencing it, and I doubt if it is caused by the machine change. I know that my SleepyHead data shows that I have high Flow Limitations, which might be the cause , but my AHI number is almost always less than 1.

I will be following this thread with interest.

Stormynights · Post by **Stormynights** » Thu Dec 26, 2013 10:09 am

For me I will have nights when I feel like I sleep too deep. I don't think this is a bad thing at all. It does take longer to get awake and going. I spent too many years feeling like I was just dozing all night.

BlackSpinner · Post by **BlackSpinner** » Thu Dec 26, 2013 11:04 am

What are the settings on number 3?

MitzyG · Post by **MitzyG** » Thu Dec 26, 2013 4:09 pm

Machine 3 is an auto...min 5 max 9. 95% pressure is 8.5 i'm a bit concerned that I should go up to max 10. But I don't want to switch it because I have to take the card back to the doctor in 2 wks. I'm hoping they'll leave me alone after that so that I can stop dealing with them.

They already know I'm nuts and that I'm starting to suspect something. I asked them for an accounting of the charges and they won't give me one. I have the list from the Insurance of the charges, but since I was charged something different, I wanted to know how they calculated it. Now I REALLY need a receipt for my mask/machine because I want my rebate! Yeah, a wee concession for the stuff they STOLE from the kits! I'm also trying to earn points so that I can get $50 more to offset the cost of the machine.

PS...one more question. I did have one hour with 4 incidents. Should I check my oxygen with an oximeter? Or do you think that's not necessary since there were fewer than 5 incidents in an hour? I have an oximeter but it doesn't record so I wanted to see if that was necessary since it does get expensive...

BlackSpinner · Post by **BlackSpinner** » Thu Dec 26, 2013 5:10 pm

MitzyG wrote:Machine 3 is an auto...min 5 max 9. 95% pressure is 8.5 i'm a bit concerned that I should go up to max 10. But I don't want to switch it because I have to take the card back to the doctor in 2 wks. I'm hoping they'll leave me alone after that so that I can stop dealing with them.

Up the minimum to at least 7

PS...one more question. I did have one hour with 4 incidents. Should I check my oxygen with an oximeter? Or do you think that's not necessary since there were fewer than 5 incidents in an hour? I have an oximeter but it doesn't record so I wanted to see if that was necessary since it does get expensive...

It depends on the length of the events - that is what creates the desats.

MitzyG · Post by **MitzyG** » Thu Dec 26, 2013 5:23 pm

Blackspinner - dumb question. If I change it now then change it back, won't the doctor's office know? They aren't the most cooperative beings. I have to go back in 1.5 wks...and frankly, in 1.5 wks I need to go back to work. So I'm a bit worried, like, if I can get better sleep, I need to do it so that I can go back to work. But I'm not sure I want to have an ugly moment at the doctor's office either. Then again...if I'm awake, I can deal with their crap better.

Today, I'm feeling better than I was yesterday and the day before...

chunkyfrog · Post by **chunkyfrog** » Thu Dec 26, 2013 5:34 pm

Play dumb IF they notice.
More than likely, they won't even care unless you are not getting in at least 4 hours per night.
Most of us need more anyway--but we don't need the stress from sleeping without the machine.

BlackSpinner · Post by **BlackSpinner** » Thu Dec 26, 2013 6:36 pm

MitzyG wrote:Blackspinner - dumb question. If I change it now then change it back, won't the doctor's office know? They aren't the most cooperative beings. I have to go back in 1.5 wks...and frankly, in 1.5 wks I need to go back to work. So I'm a bit worried, like, if I can get better sleep, I need to do it so that I can go back to work. But I'm not sure I want to have an ugly moment at the doctor's office either. Then again...if I'm awake, I can deal with their crap better.

Today, I'm feeling better than I was yesterday and the day before...

Most don't care as long as you do the hours required so they get paid. AS far as "ugly moments" are concerned - they work for you, they are your employees through your insurance. They are no different then the guy that shovels your driveway or the woman that does your hair.

MitzyG · Post by **MitzyG** » Fri Dec 27, 2013 10:24 am

First...thanks for all your help. Second, I feel better today, not sure if it's because I went to the drive in movies last night, did lots of stretching during the movie and relieved some "aches and pains".

I'm still running at a 95% pressure of 8.92 and I had an AHI of 5 at one moment. The max is 9. Should I increase that to 10 or so?

Also...before I take the machine back to the doctor, should I change the settings back? Or should I leave them as they end up being?

jweeks · Post by **jweeks** » Fri Dec 27, 2013 6:30 pm

MitzyG wrote:I'm still running at a 95% pressure of 8.92 and I had an AHI of 5 at one moment. The max is 9. Should I increase that to 10 or so?

Hi,

The high number can really be anything as long as it is above the highest pressure that you need for treatment. The only way to know is to look at your data download graphs and see if you are maxing out. If your 95% is at 8.92, you probably are maxing out. That still might not be totally bad. It is really only bad if you have events when you are max'ed out.

The more important number might be that minimum number. You want that to be pretty close to your 95% value, generally within 1 or 2 cm of pressure. The reason is that it takes time for a machine to ramp up the pressure when you are having an event. If it has to ramp up too far, it will miss the event. You want it to be pretty close to your treatment pressure so it can react quickly. If this was my data, I would consider bumping that lower number up to 7 or 8.

Setting the pressure back might not help since the changes will be visible in the download history. I believe that my treatment is more important than to give total control to others. My doctor was OK with me changing pressures when I had a good reason for it. My RT was surprised that I had a card reader (this was back before SD cards when you needed a smart card reader) and said that she thought I was her only patient that did their own downloads.

-john-

Tired after new machine?

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Humidifier

Additional Comments: pressure 7-11, epr 1, ramp 20 mins