Still Struggling Months Later

Julie · Post by **Julie** » Wed Nov 11, 2009 5:40 pm

The more air you lose either through mask leaks or mouth breathing will make a difference - the point of course is that it's supposed to go down, not out.

impatient · Post by **impatient** » Wed Nov 11, 2009 5:56 pm

I have not seen anyone suggest less pressure. If you are causing yourself to have central apneas with the high pressures you could be worse off and that might explain some of the data. Perhaps some of the long-time users could correct me here.

Wulfman · Post by **Wulfman** » Wed Nov 11, 2009 6:30 pm

impatient wrote:I have not seen anyone suggest less pressure. If you are causing yourself to have central apneas with the high pressures you could be worse off and that might explain some of the data. Perhaps some of the long-time users could correct me here.

Well, we don't know what his pressure is, but other possibilities are that the mask has the wrong size cushions.....the mask is SUPPOSED to come with all three sizes. Or.....the mask is either too tight or too loose. Or.....this particular mask is not the right type for the user......many people have reported having trouble getting this mask to work for them. In addition, we don't know if the user is using the Ramp feature and its settings. If the mask is adjusted for a lower pressure, when the machine reaches it's operating pressure, the mask may not maintain a seal.

https://www.cpap.com/productpage/1410

Lots of variables to consider........

Den

mmiller5373 · Post by **mmiller5373** » Wed Nov 11, 2009 8:22 pm

Wulfman wrote:
impatient wrote:I have not seen anyone suggest less pressure. If you are causing yourself to have central apneas with the high pressures you could be worse off and that might explain some of the data. Perhaps some of the long-time users could correct me here.
Well, we don't know what his pressure is, but other possibilities are that the mask has the wrong size cushions.....the mask is SUPPOSED to come with all three sizes. Or.....the mask is either too tight or too loose. Or.....this particular mask is not the right type for the user......many people have reported having trouble getting this mask to work for them. In addition, we don't know if the user is using the Ramp feature and its settings. If the mask is adjusted for a lower pressure, when the machine reaches it's operating pressure, the mask may not maintain a seal.

https://www.cpap.com/productpage/1410

Lots of variables to consider........

Den

I was titrated with a Nasal mask at a 7. My doctor moved me to a 9 while I was still using a Nasal mask to see if that would stop the apneas. I bought the FlexiFit mask and I'm using the large cushion for that mask. Every night, I put the mask and headgear on, and once the machine starts pumping, I tighten the headgear until the sides of the cushion don't leak anymore (although, after a while, the cushion does still seem to leak a tad around the nose and eyes). I don't use the ramp feature on my machine at all. My doctor then moved me to an 11. That pressure didn't work for me either. Since then, I've unlocked the machine and played around with the pressure settings each night. I'm currently at a 15.5, but the data seems to differ night by night.

Wulfman · Post by **Wulfman** » Wed Nov 11, 2009 8:45 pm

mmiller5373 wrote:I was titrated with a Nasal mask at a 7. My doctor moved me to a 9 while I was still using a Nasal mask to see if that would stop the apneas. I bought the FlexiFit mask and I'm using the large cushion for that mask. Every night, I put the mask and headgear on, and once the machine starts pumping, I tighten the headgear until the sides of the cushion don't leak anymore (although, after a while, the cushion does still seem to leak a tad around the nose and eyes). I don't use the ramp feature on my machine at all. My doctor then moved me to an 11. That pressure didn't work for me either. Since then, I've unlocked the machine and played around with the pressure settings each night. I'm currently at a 15.5, but the data seems to differ night by night.

Good grief.....was your doctor just "guessing"?

A few more questions.....
*When you say "That pressure didn't work for me either.", what did you mean? (what was your criteria)
*In what position do you sleep?
*Do you have a copy of your sleep study? If not, you need to get it. One of the things you need to look for is "Central Apneas".

Since you have the "Pro" machine, I think it would be beneficial if you could get the Encore Viewer software so you could actually SEE what's going on at night.

I would also suggest trying (if you haven't already) the ResMed Ultra Mirage Full Face (UMFF) mask. If you can get your DME to let you try one or swap for the one you've got.....fine. If not, they're pretty reasonably priced on http://www.cpapauction.com If you do decide to get one, make sure you use the CPAP.COM sizing guide and use option #5 to make sure of the size you need.

https://www.cpap.com/cpap-mask-sizing.php

Den

mmiller5373 · Post by **mmiller5373** » Wed Nov 11, 2009 9:37 pm

Wulfman wrote:Good grief.....was your doctor just "guessing"?

Yeah. Pretty much. Each time I've been in to see him he seemed to focus a lot of the attention on the fact that my tonsils were HUGE and that my Nasal airway was blocked, so he figured raising the pressure would help, but it hasn't.

Wulfman wrote:*When you say "That pressure didn't work for me either.", what did you mean? (what was your criteria)

Well, I wasn't feeling any better and when I looked at the data, the AHI was going up, and up, and up, and up everyday.

Wulfman wrote:*In what position do you sleep?

Usually on my side.

Wulfman wrote:*Do you have a copy of your sleep study? If not, you need to get it. One of the things you need to look for is "Central Apneas".

I don't have a copy of the sleep study, so I guess I'm going to have to try and get it. I've read a lot of about central apneas and I'm guessing I've been having a lot more of them since the CPAP therapy. I was told I had OSA by my doctor... and like I said, he thinks my airway is obstructed.

And to throw it out there, I'm a mouth breather. Have been for a very long time. When I try to breathe through my nose I feel like I can't breathe after a few minutes.

Wulfman · Post by **Wulfman** » Wed Nov 11, 2009 10:08 pm

mmiller5373 wrote:And to throw it out there, I'm a mouth breather. Have been for a very long time. When I try to breathe through my nose I feel like I can't breathe after a few minutes.

I can relate to that.
Are you doing any nasal "cleansing" before bedtime?
Also, what humidification setting are you using? I use "passover" humidification......water in the tank, but no heat (and I keep my distilled water in the fridge so it's even cooler when I top off my tank. Heated humidification can exacerbate nasal congestion in many people.

Den

mmiller5373 · Post by **mmiller5373** » Wed Nov 11, 2009 10:13 pm

What do you mean by nasal cleansing? Just blowing my nose? I could try and try for hours to blow my nose, but nothing comes out.

I've had my humidifier set on 3/5.

Wulfman · Post by **Wulfman** » Wed Nov 11, 2009 10:29 pm

Check your PMs (Private Messages).

Den

Wulfman · Post by **Wulfman** » Wed Nov 11, 2009 10:31 pm

mmiller5373 wrote:What do you mean by nasal cleansing? Just blowing my nose? I could try and try for hours to blow my nose, but nothing comes out.

I've had my humidifier set on 3/5.

Try turning it way down......maybe Off (Zero).

Den

mmiller5373 · Post by **mmiller5373** » Wed Nov 11, 2009 11:27 pm

I'm going to try the best to clean out my nose tonight. Also, I'm going to set the pressure at a 6 (which is one below what I was titrated at) to see what my AHI score will be like tomorrow. I'm wondering if the high pressure has been causing a lot of central apneas and if that's why I've been feeling kinda worse since CPAP treatment. Maybe I could have complex apnea?

Also, I will be seeing the doctor tomorrow morning.

mmiller5373 · Post by **mmiller5373** » Thu Nov 12, 2009 10:01 am

This machine is weird. It says the blower was running for 7.5 hours last night, yet, there isn't any data on the screen for therapy hrs/night, leak information, or AHI numbers.

Went to the sleep doctor and I'm not too happy about the way things went. I've been to this doctor too many times and it seems they (the nurse practioner and the doctor, although, it's rare that the doctor ever comes in to evaluate/talk) want to keep upping my pressure. I didn't bother to tell them that I've already "hacked" the lock and messed around with the settings a bit.

They also prescribed me something called Nuvigil. Said it will help me wake up in the morning. I already tried Provigil about 8 months ago and I didn't feel a thing from that. Tried telling the doctor/nurse that and they said Nuvigil should work better. Apparently, some people on CPAP don't ever get away from EDS.

Okay, well we all get prescribed these CPAP machines and it seems like a lot of us aren't getting any benefits from them. Are they just selling us these machines because they don't know what's really going on?

Hate to say it, but I may consider not going back to this doctor, even though he's a friend of my uncle. This is the second sleep doctor I've been to and it seems like nobody knows what they're talking about. I mean, medicine isn't an exact science, but come on now, somebody should be able to help.

Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Re: Still Struggling Months Later

Humidifier

Additional Comments: Pulse ox Pressure 7-10 pap-cap