Kenny's CPAP Thread

tattooyu · Post by **tattooyu** » Mon Mar 09, 2009 3:24 pm

Uncle_Bob,

It does feel good to know someone else out there (I'm sure many) are going through this, too. I'm going to give it 1-2 weeks with the Swift LT to see if I can make it work, because it is REALLY comfortable. During my first stufy (split night), they had me on the Activa, which was pretty good. During the second sleep study, they switched me to the Swift II, which I immediately loved. I'm positive it was that mask that allowed me to sleep the little I did. My DME had me try the Swift LT, and it rocks.

I don't know if I can count on my data readings for the night with such high leak rates, but my numbers are going down. My AI is consistently below 5, usually below 2. It's those darn HIs that are still high. I'm going to set my ramp from 5 min to 30 min in case the machine is recording data before I go into autonomic breathing.

Good luck, UB. I have no doubt that we just need patience and persistence, although I'm only on my first mask, so I still have plenty more to try.

Hawthorne · Post by **Hawthorne** » Mon Mar 09, 2009 6:08 pm

Kenny - Is that one of Rip Van Winkle's chin straps you are using or is it something you rigged up yourself that looks similar?

How is it working for you?

tattooyu · Post by **tattooyu** » Mon Mar 09, 2009 6:15 pm

It is a RipVW chinstrap. It's not helping too much right now. I'm still getting mouth leaks just before I wake up (according to the Mrs.). My leak rate is hovering around 0.4 L/s.

I'm considering taping tonight, but I'm a bit hesitant.

Hawthorne · Post by **Hawthorne** » Mon Mar 09, 2009 6:55 pm

Thanks Kenny. I tape but fortunately, I only need a small strip vertically on the centre of my lips. It's seems that small reminder works for me. I do have that chin strap but have not been able use it on more than one of my masks. It was interesting to see it on the Swift LT which I am using now. Guess I'll keep taping!

tattooyu · Post by **tattooyu** » Mon Mar 09, 2009 7:07 pm

Maybe I'll try that. My wife is very nervous about taping.

tattooyu · Post by **tattooyu** » Tue Mar 10, 2009 11:03 am

Hi everyone. I had an interesting night last night. Turns out we already had some 3M Micropore tape left over from my wife's emergency appendectomy last year. I took someone's advice and tried taping with just a vertical strip in the middle of my mouth. That, combined with my chinstrap, allowed me to keep my mouth closed for a good portion of the night. At 3:30 am I woke up to go to the bathroom, and when I got back, I couldn't find the end of the tape roll, so I went without tape for the rest of the night. Of course I ended up mouth breathing. I also had a strange anxious/suffocating feeling with the tape on at one point, but I may just been in the middle of an apnea.

My leak rate ended up being 0.44 L/s again. My AI was 1.6 and HI was 11.2. Not good, I know, but I'm trying. I really want this to work, which is what makes me so upset.

This morning I was really distraught because I am starting to feel the exact way I did before CPAP. I feel very shaky and anxious today. My hands are freezing. I think I'm having anticipatory anxiety that I might have a panic attack today. I'm not giving up by a long shot, but I'm not very hopeful today either.

I have a call to my DME rep. to see if I can get a Quattro or Liberty. If it's not covered, I'll just buy one from CPAP.com.

Maybe I should have started this whole thing at my titrated pressure of 16 cm rather than "working up to it".

Should I bump up my pressure to 16?
With higher pressure, will it be more likely that I'll mouth leak?

Just got a call from my DME rep. He is going to overnight me a chinstrap that goes over my head to see if that works any better. If not, then he'll send me the Quattro which will be covered by insurance (80%).

SharkBait · Post by **SharkBait** » Tue Mar 10, 2009 11:30 am

Yeah, the more the pressure the more the leak. Man, I wish I could will you into a 0.0 leak rate. You have kept such an awesome attitude through all of this and I think a couple of 0.0's would make those numbers plummet and make you feel so much better.

I know you want to get those HI's down, but you really are accomplishing a lot by pulling those AI's down as low as you have and the HI's are really within somewhat "normal" and certainly not severe range.

For someone that has some claustrophobia/anxiety issues, I'd think tape over the mouth would be darn near impossible. The chin strap worked for a while, but then I started waking up with lip flutters. I think some of this stuff works because it's foreign and once I get used to it I slip into deeper states of relaxation and there I go. Even with taping, I noticed last night (about my fifth night) that my cheeks would puff as I tried to leak air out of my lips.

I think now that I've cut myself a PAP pillow I'm going to try sleeping with the Liberty. I predict after this all settles out the FFM is destined to be my every night solution.

SharkBait · Post by **SharkBait** » Tue Mar 10, 2009 11:37 am

Were you having trouble tolerating 16? If I was titrated at 16, I'd work my way up to there as quickly as I could...

tattooyu · Post by **tattooyu** » Tue Mar 10, 2009 11:45 am

SharkBait,

Thanks for the kudos. I need it. I'm really quite saddened today about my regression in therapy, but I do try and keep a stiff upper lip. Hey, maybe that's my problem? My upper lip is too stiff!

I have never tried 16. I started out at 10, which was my preliminary prescription to just get me on a PAP machine right away. Then, after the doc reviewed the sleep study, he prescribed me at 16. I have been slowly increasing my pressure 1 cm per week. I'm at 12 now. Should I just go for it and see what happens? Can I hurt myself jumping up to 16 like that? I'll do anything it takes, even if that means blowing my head up like a puffer fish!

The tape really wasn't so bad except for that few minutes where I think I freaked myself out. I'd be willing to try it again.

Any -- thing -- it -- takes. I want to live.

Uncle_Bob · Post by **Uncle_Bob** » Tue Mar 10, 2009 3:23 pm

tattooyu wrote:Uncle_Bob,

It does feel good to know someone else out there (I'm sure many) are going through this, too. I'm going to give it 1-2 weeks with the Swift LT to see if I can make it work, because it is REALLY comfortable. During my first stufy (split night), they had me on the Activa, which was pretty good. During the second sleep study, they switched me to the Swift II, which I immediately loved. I'm positive it was that mask that allowed me to sleep the little I did. My DME had me try the Swift LT, and it rocks.

I don't know if I can count on my data readings for the night with such high leak rates, but my numbers are going down. My AI is consistently below 5, usually below 2. It's those darn HIs that are still high. I'm going to set my ramp from 5 min to 30 min in case the machine is recording data before I go into autonomic breathing.

Good luck, UB. I have no doubt that we just need patience and persistence, although I'm only on my first mask, so I still have plenty more to try.

Oh yes I am certainly going through this alright. I glad I am though because the better nights mean i feel less anxious the next day and I don't have to touch the xanax.
I got a record low AHI of 6 last night but my leak rate was 0.45 and my wife reported mask leaks and jab dropping again, this is a shame because the Swift LT is so comfortable.
I don't want to try taping and the wife (an RN) does not want me to either.

I have an appointment over at the sleep doctors (DME in office) on the 27th so I might hold until then, I'd like to be at the DME trying on the mask rather than having one mailed.

One thing I'm assuming here is that once I get a zero leak rate and a zero AHI then I am going to feel euphoric ???

tattooyu · Post by **tattooyu** » Tue Mar 10, 2009 4:32 pm

I don't even have Xanax, just breathing exercises, which don't always work as well as I'd like. I might talk to my primary about getting a prescription for Xanax for those singled-out days.

How is it that we can get an AHI that is not totally out of the ballpark with such high leak rates? I still haven't figured that one out. I love my Swift LT and I'm ready to do anything to make it work. If not, here comes a FF mask.

Just curious, what are your wife's concerns about taping? Asphyxia? I don't think there is any evidence to support that, but I'm new to this so I don't want to make any claims.

I just want to feel how I did the first week of therapy. I felt SO good. Not so much the past few days.

wasColette · Post by **wasColette** » Tue Mar 10, 2009 4:46 pm

Love the new picture!

I've had problems with mouth leak. Was using nasal mask & taping which was ok. Then I got the Quattro. It's actually a lot more comfortable than I thought it would be. I switch off between the 2, but am finding my numbers are better w/ the FF.

tattooyu · Post by **tattooyu** » Tue Mar 10, 2009 4:48 pm

wasColette wrote:Love the new picture!

I've had problems with mouth leak. Was using nasal mask & taping which was ok. Then I got the Quattro. It's actually a lot more comfortable than I thought it would be. I switch off between the 2, but am finding my numbers are better w/ the FF.

Thanks wasColette! I had to do it. My wife would love you... she LOVES Wonder Woman. Mmmmm... Lynda Carter... <drooling noises>

I'm going to give the chinstrap me DME is sending a shot, but I have a feeling I'll end up with the Quattro. I don't really mind, I just hope it works. Do you have any problems with it leaking when you sleep on your side? Do you sleep on your side?

Uncle_Bob · Post by **Uncle_Bob** » Tue Mar 10, 2009 4:58 pm

tattooyu wrote:I don't even have Xanax, just breathing exercises, which don't always work as well as I'd like. I might talk to my primary about getting a prescription for Xanax for those singled-out days.

How is it that we can get an AHI that is not totally out of the ballpark with such high leak rates? I still haven't figured that one out. I love my Swift LT and I'm ready to do anything to make it work. If not, here comes a FF mask.

Just curious, what are your wife's concerns about taping? Asphyxia? I don't think there is any evidence to support that, but I'm new to this so I don't want to make any claims.

I just want to feel how I did the first week of therapy. I felt SO good. Not so much the past few days.

Mouth taping is not FDA approved. Xanax is i have the smallest pills 0.25mg and break them into quarters I find it helps much better and takes away the need to fight through the day.
In my arsenal I also have propranolol which i take to stop nervousness before and work meetings or presentations. This is apparently what musicians use if they are nervous before concerts etc.
I looked at the Mirage and i think i remember trying that on at the DME because i remember the screw at the top of the nose (unless there are other masks with those adjustment screws ??) Anyway it leaked immediately when i turn my head to either side.

My doctor wants me to try adjustments out for a while longer.

By the way this is My doc, Hooper
http://www.amazon.com/Sleep-Its-Disorde ... 758&sr=8-3

Do you know how often you have to replace the nose pillows? i think i recall my DME saying that they mail them out but i'm not sure how often.

tattooyu · Post by **tattooyu** » Tue Mar 10, 2009 5:32 pm

Man, both of those can have some nasty side effects. Have you had any? I remember taking a Xanax when I was rushed to the ER thinking I was having a heart attack (it was a panic attack). It did make me feel better...

Not sure how often they are supposed to be replaced. Once a month maybe? I'll e-mail me DME rep. and let you know what's covered for my insurance.

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