Another new user lost in the wilderness

DoriC · Post by **DoriC** » Mon May 20, 2013 8:57 pm

Welcome! You'll find lots of help and support here. I was thinking as I read your story how lucky you were that after a complete workup which was completely normal, all you found was that you had sleep apnea which can be successfully treated with just air! I'm not minimizing the frustration of the adjustment period but once you've settled down I think most of your other symptoms will disappear. Be patient, get educated and ask lots of questions. You might want to experiment with lower humidifier settings as your face may be getting damp after a few hrs and causing the mask to break it's seal. That was the case with my husband. Have a great vacation!

keynola · Post by **keynola** » Tue May 21, 2013 6:00 am

Night 3 done (sorry, but I decided I'm kind of keeping a running log of it here for my own benefit). Pretty much the same as the others so far: woke up every 2-3 hours, dry throat, lots of gas inhaled (woke up with my stomach hurting at one point), couple mask leaks in different places from the night before, VERY tired again this morning. I started with humidification at 5.0, but had a horrible dry throat halfway through the night and turned it up to 5.5. That was the exact opposite of the night before. I don't recall any dreams. If I had to guess I'm sleeping so restlessly that I never hit any deep sleep. I usually don't drink much coffee (maybe 1-2 times a year) or soda (once a month), but this may drive me that way for while.

Yesterday I saw my primary care physician and he recommended I go to another sleep doctor/ENT to get a second opinion and discuss alternatives. Somewhere in the back of my mind I'm wondering why the starting point for this is the CPAP. If it is positional apnea and much worse sleeping on my back, why not start with something simple, like a tennis ball on your back, to prevent sleeping that way? If a simple fix can do it, why go for the $1000 machine? Granted I'll probably be on the machine eventually, but if I could put it off for a couple years, why not do that? I guess we'll discuss oral appliances and surgery too, but I've not read a lot of success stories about those options. Seems like they could both have drawbacks that are potentially more severe than using a CPAP.

I'm also wondering how best to handle the leaks. I think I may order one of the 'Padacheek' liners as RandyJ recommended them. I have essentially 27 more days to test run the Quattro Mirage before it is mine. I am interested in trying a hybrid mask if I could tolerate that instead. At least that way I could put my glasses on with the mask on if need be...

Denial Dave · Post by **Denial Dave** » Tue May 21, 2013 7:03 am

check the great information that Robysue has posted here

it covers dealing with your DME, understanding your sleep report.... CPAP induced somnia

it's worth the effort to read it all!!

http://adventures-in-hosehead-land.blogspot.com/

Dave

keynola · Post by **keynola** » Wed May 22, 2013 7:12 am

Last night was not comfortable, but I feel better today than the previous 3. Woke up with water coming in from tube around 1:30 and had to turn down humidification. Don't have a heated airline. Throat was dry anyway. It's going to take a couple of nights to dial it in right. But if that's my primary complaint at this point, I'm doing alright. Hopefully it will continue to get better.

Pugsy · Post by **Pugsy** » Wed May 22, 2013 7:23 am

keynola wrote:Woke up with water coming in from tube around 1:30 and had to turn down humidification. Don't have a heated airline. Throat was dry anyway.

Try to get your supplier to get you the ClimateLine heated hose. It will allow for more moisture to be delivered to help with the dry mouth (hopefully) and not have the condensation happen in the long hose which is annoying to hear and double annoying if you have to reduce the amount of moisture being delivered to the airway and your mouth and nose need that moisture.

DoriC · Post by **DoriC** » Wed May 22, 2013 5:14 pm

Make sure your machine is lower than your bed so water backs down.

caffeinatedcfo · Post by **caffeinatedcfo** » Wed May 22, 2013 6:25 pm

keynola wrote: I have essentially 27 more days to test run the Quattro Mirage before it is mine. I am interested in trying a hybrid mask if I could tolerate that instead. At least that way I could put my glasses on with the mask on if need be...

ResMed allows you to trade in masks in the first 30 days. DME usually plays along.

keynola · Post by **keynola** » Mon Jun 10, 2013 6:35 pm

Been about 2 weeks since I posted, so I figured I'd give an update.

I've used the machine every night except 3 the past 3 weeks. Since I got the Padacheek liner the leaks, while not gone, have become much easier to manage. Got the humidity dialed in, and really haven't had as much trouble adjusting to physically sleeping with the mask as I thought. Still haven't completely accepted it mentally, but at least I know I can do it. Still haven't gotten around to trying to upload my smart card data, but probably will later this week or weekend.

Had a follow-up appointment with a ENT today regarding other issues, and he said I had a "terribly" deviated septum that might or might not be contributing to my apnea. It is certainly contributing to my frequent sinus issues. He recommended surgery to correct it. I've known several people have that surgery, and it hasn't been a huge deal for any of them. I'm actually thinking it might be a contributor to a couple of issues I have, so I'm going to pursue it.

I do have one question that I haven't got a clear answer to yet. When I wear the mask, I generally don't dream much. However, if I pull off the mask for an hour or two at the end of the night, I dream a good bit. My understanding is most dreaming is done in REM sleep. I would have thought I would have had more REM sleep wearing the mask (less apnea), but based on my dreams that's not the case. Anybody else have this experience and know what it might indicate?

BlackSpinner · Post by **BlackSpinner** » Mon Jun 10, 2013 7:03 pm

keynola wrote:
I do have one question that I haven't got a clear answer to yet. When I wear the mask, I generally don't dream much. However, if I pull off the mask for an hour or two at the end of the night, I dream a good bit. My understanding is most dreaming is done in REM sleep. I would have thought I would have had more REM sleep wearing the mask (less apnea), but based on my dreams that's not the case. Anybody else have this experience and know what it might indicate?

The reason you remember dreams is because you woke up. This means the mask is handling the apneas but when you don't wear the mask you wake up from them and remember your dreams. Many people have far more events and longer ones when they are in REM sleep.

Pugsy · Post by **Pugsy** » Mon Jun 10, 2013 7:41 pm

They say we don't remember out dreams much unless we wake up during one.
When you don't use the mask and machine then the apnea events that happen during REM sleep are more likely to wake you up and thus you remember the dreams more often.
When you are using the mask and machine I bet you are simply sleeping through the sleep stage transitions and the apnea events are well controlled so you aren't having very many (if any) during REM and thus no wake ups during a dream to cause you to remember it.

Like BlackSpinner said...sometimes we have more OSA events during REM. It's really quite common for there to be more events during REM and even supine sleeping. So...more chances to wake up and remember the dreams if an OSA collapse of the airway causes an arousal.
I am like that...my OSA is much worse during REM sleep...like 5 times as worse.
In REM sleep my AHI was 53...in non REM sleep it is only 12. Pre cpap I never remembered my dreams very often at all. That's because just about as soon as I slipped into REM sleep I would have an apnea and then an arousal...so I never really got much REM sleep to even get a good dream started. Since cpap therapy...I am now sleeping pretty well and while I don't remember dreaming every night...sometimes I do remember one. I know that the other nights I am still dreaming but I am just not waking up so I don't remember them.

So the fact that you don't remember dreaming while on the machine is really a good thing. It means that no apnea events are breaking the sleep cycles to cause you to wake up. Your OSA is well controlled and the machine is doing a good job.
Also remember....OSA events are not the only thing to cause wakeups...So don't be surprised if later on you find yourself remembering a few dreams when using the machine. We can wake up for any number of reasons and it can happen in REM sleep too.

DavidCarolina · Post by **DavidCarolina** » Tue Jun 11, 2013 3:50 am

Just curious, why are you on Niacin specifically?

Might want to rethink that with your doctor.

I tried that and it really messed me up. The Doc told me that he's observed Niacin to
cause pvc and palps a lot.

In other words, causes breathing problems.

Another new user lost in the wilderness

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