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Some things to think about... It may be that some of your anxiety is coming from your sleep and breathing issues. It's an incredible stress on the body and mind. Logic would say to master the anxiety first to make the treatment easier to tolerate, but just maybe mastering this treatment will help calm your anxiety. If you do go thru with the titration, it may help to pre-plan and have your doc order a pill to have on hand to help you sleep during the study.

When my first setting started at 4,it nearly sabotaged my treatment. Every time I dozed off I bolted back awake feeling as if I would surely suffocate. I bet if your lower pressure was increased it would help with your intolerance by giving you sufficient air to not feel it's a struggle to breathe, thus providing the best opportunity for sleep.

My concern with you waiting is that there seems to be little reason to expect you to get better without more informatiom, which a new titration could give you. Best wishes.

A titration is the same as a PSG except that you will be wearing the mask and using a cpap machine. You will be wired and monitered just the same as you were for your PSG. From the titration they will get a titrated pressure. I'm sure it will be more than 4 cm.

If it were me, I would go ahead with the titration. Then you will know what pressure gives you proper therapy or close to it.

They may or may not reset your machine but, once you know your titrated pressure, people on this forum can help you get it set up to give you better therapy. Then you can get at the adjustment it will take to learn to sleep with the machine and the mask.

A different mask may be better for you and they may try a different one at the titration. Anyway, you will know more after the titration and can go from there. Titration can be a very helpful step in this process.

I can understand your concerns that too many people are involved and nobody is interested in you as an individual. BUT my question would be, IF you cancel your titration, what will you do? Are you just planning to let it go and not get treated? OR alternatively, what steps are you going to take to make sure you get the proper attention that you need? And can you afford to wait for that?

To me, the first option is totally unacceptable.

The second is better but would probably take a long time and in the meantime, you're missing out on treatment.

I'd strongly suggest you go, spend some time talking to the tech, read everything you can here, and take control of your treatment. In the end, NOBODY is going to care as much about this as you do. So don't wait for somebody else to take control for you. Do it yourself! It can be done!

I also don't think you need to cancel your titration, but do check with the doc for a sleep aid.

And frankly, I don't think your experiences are ANY different from what most of us on this forum have gone through, yet here were are, happily plugging along with our APAPs or CPAPs and getting it to work for us.

StephenP wrote:I just don't feel like I was evaluated properly the first time. No monitoring of mouth breathing, no acknowledgment that that particular night of sleep was absolutely nowhere close to how I normally sleep... hell, I didn't even see the doctor after my first PSG. I saw her nurse, who simply told me about CPAP machines because of my 14 hypopnea events per hour.

For ALL of us, the sleep study is NO where near how we sleep at night. First of all you're in a strange place, totally held in place by a million cables, forced to sleep on our backs, maybe a crummy pillow or no blanket, uncomfortable bed, etc. You get the picture. I had to wait two weeks for my results and I didn't see a sleep doctor or even a nurse in the meantime, had no idea whether I even had any events, and I had to wait to get the results (the 1 page report) from my PCP. In the morning they just removed all the cables and sent me home. They didnt't check me for mouth breathing either, not during the PSG nor during the titration (and I mouth leak horribly, i had to discover that on my own).

StephenP wrote:I know you all think I should go to the titration, but I don't feel like I'm getting the proper attention. There are too many people involved in this; they are all trying to make their money, and nobody is paying attention to my individual needs. I haven't seen an actual doctor since February.

Hm, again this doesn't seem any different from what most of us went through. Each sleep lab is different, maybe you just got one that's a little more "cold" than others... but look at what you DID already get: You got to take home an APAP and play with it BEFORE your titration! When the rest of us went in for our titrations, we had NO IDEA what the mask would feel like, what it would be like to breathe against the CPAP pressure, maybe we didn't even know what a CPAP was!

So instead of going in with a defeatist attitude before your therapy has even begun, look at what you HAVE learned and look at how that can help you the night of the titration and after. This is YOUR life. And life sometimes isn't fair, sometimes we get short-changed, but YOU have the power to make the most of it and to demand better care if you're not receiving it. So far, we don't have any evidence that you have received any worse care than the rest of us. I can tell you some stories about just how much stupid advice I got from my sleep lab, yet here I am, making it work despite the fact that I didn't get any assistance from my sleep lab (and I don't have a DME either).

As the others have already said, your anxiety may well be helped by the CPAP, so don't fight against yourself, just do what it takes to get to sleep during the titration and forget the rest. Once you're set up with your prescribed pressure, come back here and we can help you tweak everything so that you ARE sleeping comfortably and well.

Well, I ended up sleeping after taking the mask off. Got about 7 hours of my usual mediocre sleep, but am nonetheless in a more rational mood.

Do you think they'd at least let me take some unisom and melatonin? I do want to continue with the treatment, since doing so will, at worst, allow the doctors and myself to see for certain that CPAP isn't what I need. But like I said, I haven't had enough time to get used to this, even with taking Melatonin and Unisom (and sometimes Valerian root as well), and if I don't actually fall asleep tomorrow night at the sleep lab, my showing up there would've served no purpose. But at the same time, I know sedatives can relax your muscles too much and cause more apneas, thus making my prescribed pressure inaccurate. My normal sleep aids include melatonin and valerian root only, but those are milder and ease me into a sleep under adequate conditions. I need the addition of something to knock me out if I want to actually get some sleep with the mask.

Well if you don't go then they can't even help you deal with the pressures and masks and you are stuck where you are at.

You have a problem, you are getting help, all you have to do is show up and corporate. It is a no brainer.

On the night of my titration, I took a Xanax to help with the anxiety and the sleep lab tech said it was no big deal. I don't see why they should mind if you took unisom or some melatonin before your titration. I would def. go so you can get your accurate pressures.

I called my Pulmonary Specialist's office, and nurse called me back. I told her all the problems I've been having falling asleep. She basically said it looks like I'm not ready for the titration since the tech will need me to go to sleep, and she asked me what night of the week is best to reschedule. I told her I'd rather not if the doctor can give me something temporary to help me sleep. She said she would ask, but typically they want me to be asleep naturally to get an accurate titration. She asked if I'd tried on more masks, and I told her Apria didn't really give me the opportunity, and it seems like the mask isn't really the issue anyway. It's the fact that there's a mask on me in general. So she told me that May 11 is the next available night, and I just agreed and got off the phone. I'll be surprised if she asks the doctor anything.

My next attempt will be to modify a foam pillow to accomodate the mask in my sleeping position. Plus a double dose of melatonin and Unisom tonight.

NO, don't cancel! You need the titration.

After all the handwringing and stress....
you have the technology you need,
to take care of yourself...
setting on the bedside table.
You have access to the materials to educate, yourself,
at your fingertips.
You have a knowledgeable support group, at your fingertips.

In the end,
after all the docs and studies and DMEs,
in the dark of the night
each of us makes this journey,
alone.

May be time to just get on with it.

You're just putting off the inevitable, and it sounds like you think you don't even need the CPAP.

How many ways in how many languages can we tell you that NO MATTER IF YOU GO TO THE TITRATION NAKED you will NEVER capture a typical night. Some nights I'm drunk, some nights I go to bed at 6am, some nights I take melatonin and sonata and drink my sleepytime tea, some nights I'm completely exhausted and other nights i'm wired. Yet SOMEHOW by MAGIC the titration , where i was forced to sleep on my back, and i only slept a couple of hours, was somehow able to capture at least a snap-shot of what i MAY be sleeping like on SOME NIGHTS. And lo-and-behold, after 3 years (and weight loss and gain) the titration pressure still more or less works (with some tweaking on my part because I have the data capable APAP and software).

The titration gives you a STARTING POINT. That's why we all have the SOFTWARE and the DATA CAPABLE APAP, because we KNOW that one night's titration doesn't capture the WHOLE picture of WHO WE ARE AND HOW WE SLEEP EVERY NIGHT.

Give up now, you might as well make your funeral arrangements now (or at least schedule that heart by-pass now). Oh and start putting aside money for all the other medical conditions that will start popping up as a result of untreated apnea.

It's your life, no one is going to hand you the magical cure on a silver platter.

I'm gon'a see you on down the road.

viewtopic.php?f=1&t=34880

carbonman wrote:
FFM...sidesleeper......pillow slasher.

Desperate times call for desperate measures.
I think I have tried every pillow out there.
This is still my every night pillow.

Is it common to get a machine and pay for before you go for a study? Seems like they putting the cart before the horse. Maybe if they gave you a loaner but to buy a machine before you are diagnosed as needing it seems a bit crazy.

StephenP wrote:My next attempt will be to modify a foam pillow to accomodate the mask in my sleeping position. Plus a double dose of melatonin and Unisom tonight.

What you need to do is bump up your bottom starting pressure. If you don't have the software 7 or 8 should be a comfortable starting pressure. Give it a try BEFORE bedtime.

Then work on slashing your pillow. Get your list together.

Plan your work - work your plan.

echo wrote: . . . Some nights I'm drunk . . .

Cancel that.