Survived my titration - thanks for the support!

[psychomamma]

Hi all.

I survived my titration study last night - the first night I've ever worn a mask. The tech seemed surprised that I knew what mask(s) I wanted to try out!! I told him that I'd been on a CPAP forum and he said 'that's really great that there are forums like that out there' -- AMEN, is what I was thinking!! Thanks so much for all the help you have been so far - I'm sure I'll need more as I go along.

I wore the Swift LT all night and tolerated it pretty well. Only problem was that my mouth kept opening, so I feel filled up with air like a balloon this a.m.!! I'll have to check out chinstraps and taping options once I am actually using it daily. The tech felt like the mouth opening was just a "getting used to it" problem, but I know from this forum that isn't necessarily so.

So now it's a three week (or so) wait for the prescription and equipment. My doc had said since they were so backed up, I could get my equipment now on a wider setting and then have it adjusted when I get my actual prescription. What do you think of that? Would that do me any good? I suppose I could track data and made adjustments myself over the next few weeks. I don't want to sabotage myself by starting with the improper settings, though. I'll go with your collective wisdom!!

Thanks again - so much - for giving me a place to ramble and gather information. As I'm sure you all know, the entire world doesn't find this issue nearly as interesting as we all do!!

LIsa...

[BleepingBeauty]

Congrats on your successful titration!

I can't comment on data-tracking and/or adjustment, since I have no experience with that, myself. But as we both know, many others here with knowledge in that arena will undoubtedly chime in with their advice. Good luck!

I love this place.

[ozij]

So now it's a three week (or so) wait for the prescription and equipment. My doc had said since they were so backed up, I could get my equipment now on a wider setting and then have it adjusted when I get my actual prescription. What do you think of that? Would that do me any good?

Sounds like an excellent idea. Much better that waiting for your PSG results to be analysed.

I suppose I could track data and made adjustments myself over the next few weeks. I d on't want to sabotage myself by starting with the improper settings, though.

You can't sobotage yourself - at most your sleep won't be very restful during the first few nights with the range wide open- but the machine will point to a recommended presssure, and the doctor, or you, could then raise the bottom pressure based on that.

Do make sure that the machine you get for keeps has full data recording capablilty, and if you can get an automatic one, that would be even better.

O.

[builta]

Congrats! Good luck. Post info on the equipment that you get so that specific help can be provided.

[Hawthorne]

I agree 100% with Ozij! Go for the machine set at a wider setting now. It will probably give you a better idea of your true therapy pressure setting than the titration night did and that's good.

As Ozij says, really push for a machine with data recording cpapability and, for sure, an auto if at all possible.

Good luck!

[birdshell]

Some people are actually titrated using an APAP wide open (which is a whole 'nother topic), so I cannot see how you would harm anything by using the machine sooner. You would be confirming the titration pressure by having more information. Your results might be a bit better, even, if you are used to the mask and sleep in the wire-free and comfortable environment of home.

One note, most of us seem to feel suffocated at 4 or even 5, so don't be too surprised. It might take a bit before the machine gets past that level, so hang in there!

Karen,
Who thinks treatment sooner is better than later

[Gerald]

Lisa......

All of the above is good advice.

If I were you, I'd push hard for an "auto" machine....with full data capability....a machine that'll let you run your own software.....so that you can do a "miniature self-titration" every night....if you want to.

You also want a machine with relief on the "exhale".......and a humidifier. I'd set it at a low of 8-cm.....and a high of 16-cm....a wide enough spread to get an indication of where you might should be....but not so wide that the machine can't react properly (and quickly enough).

An example of the machine you need is a Respironics "M" series Auto with AFLEX and an integral humidifier. It doesn't have to be that exact machine......but if you choose another, it should have the same capabilities. Whatever machine you order, get the reporting software to go with it....along with a card-reader so that your lap-top can produce a report for you. Don't fall for the "bring the card to us and we'll read it for you" horse poop. Do it yourself.....that way, you control your own therapy....with "their assistance".

If you've been lurking here very long, you already know that they will try and steer you to an el-cheapo machine without full reporting capability......because they make more money that way. If they try it on you, "set all four parking brakes" and don't budge until they relent.

Up to now, you've made all the right moves.

Researching my ancestors from Texas, I came across a quotation that has been an inspiration to me.

"It's almost impossible to stop a man......who know's he's right.....and who just keeps on a-coming".

You're doing well.....just keep on a-coming.

Gerald

[birdshell]

Gerald makes some good points, but I would like to add that the various brands of machines name them differently. ResMed calls its C-flex type feature (they do differ SLIGHTLY) EPR, for something like "expiratory pressure relief". I think that is a patent/copyright question!

I also would not set my APAP at anything other than 4-20 cm until you get the report from the sleep lab titration. There are people who have pressures of 6 or 7...so, until you know for sure, I would personally feel more comfortable starting out with the recommended setting. Pressure is not an indication of the severity of apneas.

After a few nights, you could adjust it for more comfort but...who wants too much pressure with all of the harm that could cause? True, the reaction time may be a bit slower and your treatment COULD be much better with a more restricted range, but there are dangers from having a pressure that is too high. You can always try using the machine at 4-20 cm for a few nights and then ask your doctor for a tweak of the pressures.

That said, keeping that 4-20 cm setting isn't a great idea for the long haul, either! Gerald is right that the machine takes a bit of time to discover the pressure you need, so setting it for a tighter range will improve your treatment. I would personally want to proceed carefully for the first few days. One sleep tech was complaining to me that he sees patients all the time who have been prescribed APAPs and that they are using the 4-20 range on a long term basis as recommended by their doctors. Now, THAT cannot be too good!

Right now, you are going to be better off being treated at all as opposed to not being treated. I had to sign a waiver stating that she knew driving without sleep was dangerous at the sleep lab...right before I drove myself home...uhhhhhh, right!

I personally am impressed that your doctor is having you treated right away. Many of us have to wait a month or more. This always has seemed pretty dumb to me, when there is a problem, we have been titrated and determined to NEED CPAP and then...wait a month or so, and let's hope you don't have anything else happen in that time!!! What is wrong with that picture????

Karen,
Who hopes your doctor won't mind sharing control of some of YOUR treatment with YOU

[Gerald]

Lisa.....

I respectfully disagree with Birdshell...just a little bit. I can see her point at suggesting 4-20cm settings......but I don't think it'll work. I think Birdshell is probably being overly cautious.

At the very minimun, I think the lower end pressure should be not lower than 6-cm.......and I say that from experience. I started out just like Birdshell suggests....and quickly found those settings to be unworkable. I suspect that....just as I did....you'll find that 4-cm on the low end....is so low that you won't comfortably get enough air.

So Birdshell says 4-cm....and I say 8-cm.........I'll "compromise" and say you might try 6-cm.

Either way.....this exchange of views makes you smarter by the minute.....and making our therapy interesting and fun....is what makes success more probable.

Gerald
(Not willing to give up ANY control to the "doctor")

[alnhwrd]

Lisa,

Glad to hear things went so well for you! It is so much better to be a well informed participant in your medical treatment. I'll add one more "Yes" vote to you getting your machine now rather than waiting. It will at least give you some practice controlling leaks, hose management, figuring out what cleaning regimen works best for you, and trying a mask or two. Keep us posted!

Alan

[timbalionguy]

I knew going into my sleep study that I had severe sleep apneia. An informal home study showed an AHI of 64. AHI was 96 in the sleep lab, and I was 'hard to titrate' according to the tech (who was wonderful BTW, and could 'talk tech' very well). I wish I had been able to get a machine right away and set it up on a wide range just to get some relief. But when I was finally given a prescription, it was for APAP in a fairly narrow range...10-13 cm/H2O.

Carefully studying this site helped me pick a machine and mask that seemed right for me. And so far (2 nights), the choices appear to have been the correct ones. (I opted for a FFM right away as I knew I breathed through my mouth quite a bit). And although expensive to start, purchasing the machine and supplies outright saved me the hassles of dealing with a DME. (The stories posted here make me shudder!)

[preemiern]

I too would go for the machine now!! That will save you 3 weeks of suffocating in your sleep. I would definitely set the lower end at 8 though. It takes a while for the machine to titrate itself up to the proper level if it is wet too low and you are having apneas. 8 is still relatively low, but you won't feel like you are suffocating at that, and it is low enough to get used to fairly quickly!!
good luck!!
Cindy

[Gerald]

Timba.....

It sounds like you're making all the right moves! Congratulations on your early success......and your bypassing of the DME money-mill.

Gerald