anyone on a lower pressure than titration?

deerslayer · Post by **deerslayer** » Wed Apr 23, 2008 8:27 am

i have no earthly idea what i was titrated at. my machine is set for 5 min & 15 at the high end. a few days ago i changed the min to 8,but was uncomfortable to adjust to... so i compromised and set min at 6.5 and seemed to work better. like you i tend to do some lip flapping at higher pressures with the swift II. soooo i have tried 2 different ff masks thinking that would lick the minor mouth leak. wrong, so far i have not had the patience to tolerate the bulky,bruising, terrible leaking(when i roll on my side) plus with the ff it's crappy resulting #'s. ahi 8 one night,then i go back to the swift and ahi is back to 3 oa under 1 with leak rate at 35. as you know you can drive yourself nuts worrying with this mess. all in all i think we are on the right track just tweeking here and there and just let it happen and not stressing too much over the whole deal. Peaceful Zzzzzzz Sharon ! tim

Snoredog · Post by **Snoredog** » Wed Apr 23, 2008 8:57 am

[quote="sharon1965"]hey all
i had been titrated at 6cm jan. 2007, but increased my pressure to 8.5 in sept....
then i had a new study done in january 2008, where they settled on 10...
doc. said to try 9.5 for a while, which i did...
i've been feeling like hell since january...at the study i was mouth leaking, which hadn't been an issue at 8.5 cm...
since i increased to 9.5 i've been mouthleaking like crazy...so i've been trying fullface masks, with no success so far...but i'm about to trade my fp431 in one of these days (when i get up the energy to go to the dme, lol)...
since i was still feeling so rotten, i changed my pressure to 10, but after a week on 10 i was feeling worse than ever, pretty close to my pre-cpap condition, and mouth leaking even more (been trying to make a chin strap work, but it's just so uncomfortable after a year on the headrest which is like going commando )...
so last night i reduced the pressure to 9 cm, and my numbers were great this morning (ahi 0.9) with a great leak line, and no mouth leaking at all; i know i have to give it a week or two, but this seems encouraging...
so whaddya think? anyone have success with a lower pressure than the study suggested?
thanks
sharon

frapilu · Post by **frapilu** » Fri Apr 25, 2008 10:53 am

Hey Sharon,

I'm opposite to you. The pressure I need is higher than what I was titrated at. When I was first titrated almost 5 years ago, they said I should be at 11. I felt terrible so slowly increased it myself until around 13. I didn't then and don't now have a data machine so I have to go by how I feel and whether I wake myself up snoring.

Last year, I decided that I should get retitrated to see if they would figure out I should be around 13. Besides, I was waking myself up snoring. They titrated me at 10. Sigh. Luckily, at that time, the RT working for my DME wasn't big on rules so she let me borrow an APAP a few weeks without getting a sleep doctor permission (I didn't know at that time that she was being bad -- I thought she was helpful). The report clearly showed that 10 was ridiculous so I went to see the sleep doctor with the report. He was surprised but wrote me a new prescription for 13 - 14.

Since I had a septoplasty last year, I thought it would be nice to borrow the APAP again to see if anything has changed. Unfortunately, that RT isn't there anymore and the new RT's follow the rules so they want me to go through the sleep doctor.

Oh well, I'm due to get a new machine in August this year so I guess I have to go through a sleep doctor anyway to get permission to get a new machine so I suppose I'll call. It shocks me that I should need permission from a sleep doctor to get a new machine. If I've been using cpap for 5 years, doesn't it just make sense that I still need one? Why waste OHIP money to go to a doctor to have him say "yes, she's been using a cpap for 5 years so she still needs to use one". But those are the rules.

By the way, sorry to hear you're having issues with full face masks. I have to use one too and I'm not thrilled either. My UMFF has recently broken so I'm trialing masks. So far, I actually like the Quattro but I remember you didn't like it.

Good luck. Good for you for not just believing the titration they give.
France

goose · Post by **goose** » Fri Apr 25, 2008 12:44 pm

Hey France,
You are correct that you are "due" a new machine at 5 years, however, most insurance companies tend to balk at paying the money if the machine you have is still functional.
When you bend your doctors arm for the APAP let him know that your existing machine is malfunctioning and that it's adversely affecting your treatment (out of warranty, cheaper to get a new one, yada yada yada).
I would also let him/her know that you want a data capable APAP so that you can check your pressure range at times, with his/her concurrence of course ........(If the script can be model/make specific, do some research and figure out which machine you want the script to call for)

Good luck in your quest....
cheers
goose

frapilu · Post by **frapilu** » Fri Apr 25, 2008 5:57 pm

Hey Goose,

I truly wish I could get an APAP for my new machine but that won't be possible. In Canada, they put in new rules last year (something about having a difference of 4 cm of pressure between sleeping on your back and sides or something like that) and I don't qualify. However, I will be insisting on a data-capable cpap machine.

France

stevoreno · Post by **stevoreno** » Sat Apr 26, 2008 2:49 am

[quote="sharon1965"]hey all
i had been titrated at 6cm jan. 2007, but increased my pressure to 8.5 in sept....
then i had a new study done in january 2008, where they settled on 10...
doc. said to try 9.5 for a while, which i did...
i've been feeling like hell since january...at the study i was mouth leaking, which hadn't been an issue at 8.5 cm...
since i increased to 9.5 i've been mouthleaking like crazy...so i've been trying fullface masks, with no success so far...but i'm about to trade my fp431 in one of these days (when i get up the energy to go to the dme, lol)...
since i was still feeling so rotten, i changed my pressure to 10, but after a week on 10 i was feeling worse than ever, pretty close to my pre-cpap condition, and mouth leaking even more (been trying to make a chin strap work, but it's just so uncomfortable after a year on the headrest which is like going commando )...
so last night i reduced the pressure to 9 cm, and my numbers were great this morning (ahi 0.9) with a great leak line, and no mouth leaking at all; i know i have to give it a week or two, but this seems encouraging...
so whaddya think? anyone have success with a lower pressure than the study suggested?
thanks
sharon

sleepy42 · Post by **sleepy42** » Sat Apr 26, 2008 7:51 am

I hate to sound like a whiner... but my Dr. prescribed 9cm, the sleep tech had told me I did pretty good at 8cm (what ever she meant by that)... While I know that 9cm is not high by some people's standards... 9cm seems like it it inflates my lungs like a balloon... and I know I'm getting air in my stomach/intestines... I also know that I forced myself to sleep on my back during the titration because they told me they wanted to see some time on my back... Well, I virtually never sleep on my back when at home. I no for sure I don't need 9cm while on my side...

I'm just three days into CPAP... I truly think that 9cm is too high for my needs... I'm reluctant to change it, but then if I don't get better sleep soon, somethings going to change.

Not that that are at all related... but I'm the type of person who typically takes about half the recommended dose of your typical pharmaceuticals... It seems I would likely be better off figuring out for myself what my best CPAP pressure is too...

ozij · Post by **ozij** » Sat Apr 26, 2008 8:06 am

Sleepy42, if you add your macine description to your profile we'll be better able to know what's going with you.

I was titrated to about 7 in the lab with very little sleep, sent home with Resprionics Remstar Auto for an at home titration, which RT no. 1 interperted at 7.5. That was bad.

RT no. 2 agreed on a 4-8 range, and now I run my 420E at 6 - 8, with the Initial pressure on that machie defined as 7. It starts a 7, drops me to 6, and keeps me there most of the night, rising quickly to 7, and more slowle further on. I spend about 71% of the night at 6, 24% at 7, and 5% at 8.

At fixed pressure I would have need 7 or more...
O.

sharon1965 · Post by **sharon1965** » Sat Apr 26, 2008 10:10 am

stevoreno wrote:
A mere 10cm is nothing more than a gentle breeze, you should try 18cm. Nice avatar by the way Ms. Sharon.

hey stevo
thanks for the compliment

i'm sure 18 cm is tough to tolerate...but i never said i was having any trouble tolerating any of the pressures i was trying, including the "gentle breeze" of 10 cm; what i did say was that none of them were working for me in terms of good therapy

sleepy42 · Post by **sleepy42** » Sat Apr 26, 2008 3:09 pm

Well I added my equipment info... My ramp time is set to 45 min starting at 6cm... Much lower then that and I can tell it's not really keeping my airway clear, higher then that, I'm just not comfortable when I first turn the machine on... I've got C-flex set to 3... During the course of a evening, I tend to get more used to the 9cm and then when I awake, anything less then 6cm at ramp start seems like I'm dying for air... My first impression of ramp start pressure is/was that I need two settings... One for when I first lay down for bed, another for if/when I awake during the night and need to get back to sleep... I've settled on 6cm as a happy medium.

I've only used the thing for 3 days now... my AHI average according to the machine was 2.2. My biggest problem is that it just feels so unnatural having air forced down my nose and blowing up my lungs. At full 9cm, it really feels like I have to work hard to make sure I don't hyperventilate by taking in two full lungs full of air on each and every breath...

When I'm on my back 8CM feels pretty good on my back, but on my side it just feels like I descried above where I feel like each breath is being forced to be too deep... 7cm feels much better on my side, even 6 or so seems like it would be enough to keep me from snoring and yet also not going to puff my lungs up so much that I can't hardly stand it...

Most likely, I'm just a newbie who hasn't managed to get used to the new CPAP experience...

Pineapple · Post by **Pineapple** » Mon Apr 28, 2008 11:08 am

sleepy42 wrote: I've only used the thing for 3 days now... my AHI average according to the machine was 2.2. My biggest problem is that it just feels so unnatural having air forced down my nose and blowing up my lungs. At full 9cm, it really feels like I have to work hard to make sure I don't hyperventilate by taking in two full lungs full of air on each and every breath...

Listening to this reminds me of my first week on CPAP. I found myself being driven by the sound of the machine to breath. Once I convince my brain that the machine was reacting to my breathing, not making me breath, I was better. It took about a week before I could lay down and "ignore" the machine. Perphaps you could test to see if it's the pressure bothering you or the sound by using ear plugs.

socknitster · Post by **socknitster** » Mon Apr 28, 2008 12:51 pm

Sharon,

My own experience was that I was titrated at 16/12 bipap after a split night study that really wasn't all that comprehensive. I managed to get a bipap auto and learned to change it thru the clinician's manual. It quickly became apparant that after many, many nights of data that I was settling more around 14.

Then I got my tonsils taken out. That reduced my pressure a great deal once I healed from the surgery. My pressures now run something more like 11/7 or sometimes 10/7.

Another thing that helped me reduce my pressure is addressing my longtime problem with GERD. Now that I am 32 weeks pregnant, this has continued to be CRITICAL for maintaining good sleep all around. I sleep on a wedge called medislant on my left side only--that alone helps a great deal. In the morning I often like to roll on my right side for a few minutes just before getting up and the acid creeps right up my throat immediately.

Secondly I take a zantac before going to bed each night--this was approved/recommended by my doctor who knows my history. I hate taking any med while pregant, but this seems to be critical to getting good sleep and keeping my numbers down. Missing one night of zantac can mean bad sleep for a few nights because my throat gets inflamed. In the long run, my sleeping well is a lot better for the baby. I can sleep a whole night without getting up to pee--still. At 7 months gestation that is no small thing!

So, yes, not only can you end up on a lower pressure than that originally prescribed, but you can also find ways to decrease your pressure significanlty. I wish a few more folks out there would try a tonsilectomy. It wasn't a cure but it increased my comfort significantly. I would never even entertain the surgery that cuts up the uvula or palate, but tonsilectomies are fairly common--even among adults. It took a few weeks to recover from the surgery, but I am so glad I did it now.

GERD needs more attention as well. Especially the silent version which is what I have had for years. It is always worse at night when we sleep and could even be a possible cause of sleep apnea for some, causing inflammation in the airway.

Anyway, that is my .02 on this topic!

Jen

sharon1965 · Post by **sharon1965** » Mon Apr 28, 2008 1:30 pm

hey jen
glad to hear you are in the homestretch of baby-growing...sounds like you're doing well, considering!

in terms of my question, i guess i'm just confused about what my pressure SHOULD be, since i started at 6 and didn't find that i was feeling any better, even after months of therapy, septum repair and being dx'd and rx'd for RLS/PLMD...so when i got my data capable machine, i started upping my pressure gradually...i settled on 8.5 since my ahi was usually under 2.5 and i was satisfied with that...but i still haven't ever felt any better, other than eliminating the need for 3 hour 'naps' every day; it wasn't until i went for that study in january 08, where they settled at 10, which made me think that maybe an insuffienct pressure was the reason for not feeling measurably better...but since i went up to 9.5 and then to 10, i've felt worse than ever...it's only been about a week now that i've been down to 9, and each night has brought something different, with ahi's ranging from 0.9 to 4.0, and i'm back to feeling like the walking dead and craving sleep almost constantly...yesterday i laid down at 5:30 pm for a 'nap' and woke up at 10 pm! i went back to bed around 1:00 pm and slept till 7:30 am...once i got the kids off to school i went back to sleep till 11:00 am...this is what life looked like pre-cpap, and i'm not terribly interested in going back to that on a consistent basis!

so...while i've said many times that i don't feel any better, i guess that's the best that i can hope for: not to feel like i have this past few months again

so i guess i'll stick with 9 for a while longer...at least i've eliminated the mouth leaking again, which was making me completely nuts

news at eleven

socknitster · Post by **socknitster** » Mon Apr 28, 2008 3:23 pm

Yes, that is a dilemna. Your numbers are all over the place. Have you thought about getting a second opinion--taking your most recent sleep study to another clinician to look over?

I wish I could be more help. But other than keeping a meticulous diary of symptoms, ahi and pressure and trying some of these various pressures for a few weeks at a time, I can't really suggest more than that. Sorry.

I hope you figure it out soon. You sound miserable.

Jen

goose · Post by **goose** » Mon Apr 28, 2008 6:05 pm

Hey Sharon,
I don't feel absolutely wonderful either, but like you were saying before, I'm not falling asleep every day, so if that's what I'm going to get for now, I have to be happy with it. My average AHI is around 2.7 -- mostly HI's, but that's what it is for now.....
I'm at 10 now.
When I was at 9, it was about the same, but a bit higher -- not feeling any improvement.
When I was at 11, my AHI was higher and I didn't feel like I was sleeping any better......

It sounds like you're on the right track.....keep at it!!!

Take care and good luck!!!!
cheers
goose

anyone on a lower pressure than titration?

Re: anyone on a lower pressure than titration?

Re: anyone on a lower pressure than titration?

Re: anyone on a lower pressure than titration?

Machine	Mask

Additional Comments: straight cpap 12.20 AHI avg.0.79