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I'm here now. They don't have a hybrid mask. They are going to let me try a quattro.

StephenP wrote:I'm here now. They don't have a hybrid mask. They are going to let me try a quattro.

Could this be a historic first-ever "live-blogging" of a titration study?

Well, it was a failure of a night. Here's what happened.

I took Valerian root and Unisom (staying away from the melatonin because I'm suspecting it's not helping my depression), and was hooked up to the stuff by 10 p.m. The tech was the same lady from my last sleep study. She's very candid and extremely helpful. She seems to actually care about her patients, or at least me in particular. I felt comfortable knowing she was there, but nevertheless, I ended up having a full-blown panic attack at 11:00 p.m.

The tech called her supervisor and the main sleep doctor, who were both confounded that my pulmonary doctor wanted me to keep the titration appointment after only getting a week to try the APAP, even more confounded because I called the day before to actually say I wasn't used to the mask. The sleep medicine doctor (who i've never met) said 3 weeks of acclimation time is what he usually recommends. They all recommended I end the study, and they'd make thorough notes about what happened in order to avoid me getting a bill for it. The sleep doctor said he wanted to deal with my pulmonary doctor himself -- so whatever drama's going on there, I'll stay out of it.

I was able to try on a comfortgel full-face mask, and nasal pillows. I think the comfortgel would be a good starting point, but the nasal pillows is my ultimate choice if I can learn how to breath through my nose only. I love that it's so unobtrusive and doesn't cover my nose or mouth. The tech said she really wants me to get on CPAP, so she asked me to schedule my next titration on a night when she's working, and she sent me home with both the comfortgel and the nasal pillows (as long as I keep it hush hush).

So, I'm starting over and plan on making an effort to get used to the machine without the burden of a deadline. I'll schedule the titration once I'm ready, and no sooner.

I'm sorry that happened.

I don't know if I am like most people as far as sleep studies go but, when I was diagnsoed, I had my PSG and my titration was 3 months later. That's not good I know but things are slow where I am.

I was not given anything after my PSG. I just slept without benefit of machine for the 3 months. I had no oportunity to getu used to anything between the PSG and the titration.

When I went for the titration, I was hooked up and, after trying on 3 masks, settled on one. I did not sleep well at all. I just had the feeling that the mask kept leaking. However, they got enough apparently, to set a titration.

I do hope you will try the masks and machine every night and make your next titration appointment as soon as possible.

The other thing is that you may get used to it and discover it is the sleep lab situation that is your real problem. You may have to work on setting up your machine and getting therapy to work, without the titration study. I takes longer but probably people here can help you to do that.

Keep at it and all the best!

I also find it interesting that they give you a machine and time to adjust to the mask before the titration study. Mine titration was also months after my initial study. During that time I was not offered anything as far as treatment went. When I showed up for the titration I was shown the mask for the first time. I was not offered any choice in what mask I got. They handed me a mask and told me to hold it to my face while they wired me up. That was all the acclimation time I received. Both studies were the worst nights of sleep I ever had.

Hi Stephen,

I am sorry your night went so badly. What model of masks did you end up bringing home? What kind of mask were you using when you had the panic attack?

I am surprised by the sleep center's approach. My sleep study and titration was one night. Although my dr. did not order a split night study, mine turned into one because I was found to have 87 apneas per hour in the first two hours, so was diagnosed with severe sleep apnea. They showed me three masks (nasal, full face and nasal pillows) before initially going to sleep and asked me which one i wanted to use if I needed to use CPAP. I said I was sure I was not going to need CPAP but chose the nasal pillows because it looked the least claustrophobic. They didn't let me try on any of the masks.

I was shocked when they woke me up to tell me I needed CPAP therapy and put the nasal pillows mask on me, but I went right back to sleep wearing the mask amd slept soundly. My sleep study and titration was done in one night. Based on the results of the sleep study, an APAP machine and nasal pillows mask were prescribed. Within a week, a DME contacted me and I was outfitted with the Remstar System One APAP machine with humidifier (same machine you are using) and a nasal pillows mask. Although they started me off on a constant pressure of CPAP that proved to be too high, I felt good enough after the first night of using CPAP at home that I was hooked.

Personally, I cannot imagine going home without the titration to figure out how to use the equipment and the mask fitting by the DME and instruction setting on how to use the machine.

It sounds as if you need to get your general anxiety under control in order to tolerate the titration. I was already on medication that adddressed anxiety and depression issues before i ever went for the sleep study. Immediately before the sleep study, I was so tired, I was able to sleep 24 hours a day (with no CPAP) and feel no benefit. In fact, I slept all day before the sleep study, got up in time to get there, and happily went back to sleep. I took my regular nightly medications at the sleep center before going to sleep.

I would ask your primary care doctor or a doctor who deals with anxiety and depression to prescribe medicine to help get your anxiety, panic attacks and depression under control. I tried all sorts of herbal remedies but none of them worked for me and I ended up on an anti-anxiety medicine (Clonazapam) and anti-depressant (Cymbalta). Getting on the right anti-anxiety/ antidepressant can be as much trial and error as getting CPAP/APAP therapy working. A non-prescription anti-depressant that you could try (preferably after constultation with a treating physican or nutritionist familiar with your health) is SAM-E.

I think getting the conditions causing you stress and anxiety treated will help you get used to CPAP. Getting used to CPAP is stressful, so I don't know that CPAP/APAP treatment alone is going to address your anxiety issues. It sounds as if CPAP/APAP is making your anxiety worse, which does not surprise me.

I am not a medical professional. This is just based on my own experience and observations based on my research and reading. I hope it helps.

Hi Stephen,

Until you get the sleep doc to call your DME to INCREASE YOUR MINIMUM PRESSURE TO BETWEEN 6-7, you will continue to have problems using your APAP to acclimatize! Please consider doing that ASAP.

Over a year ago when I was given a CPAP to acclimatize for 3 weeks, I went through the SAME thing . . . I COULDN''T BREATHE I was IMPOSSIBLE TO SLEEP BECAUSE I WAS STRUGGLING TO BREATHE AT 4 PRESSURE! -- The people on this forum let me know what was going on and that it was the super-low pressure that was my problem. They actually showed me how to increase the pressure myself - first I put it at 6, then to 8 and FINALLY I WAS FINE . . . I COULD BREATHE EASILY AND I COULD SLEEP.

If you want to increase the pressure of your machine yourself, just ask here on the forum and someone will give you clear instructions. (By the way, you can't hurt yourself by doing this!) OTHERWISE, I'D SUGGEST YOU CALL YOUR DOC ASAP AND GET HIM TO INCREASE YOUR BOTTOM PRESSURE TO AT LEAST 6. JUST TELL HIM/HER THAT YOU CAN'T BREATHE AT THE LOWER PRESSURE AT 4, AND YOU FEEL YOU ARE SUFFOCATING! (It takes too long for the machine to increase pressure from that super-low pressure automatically; you need to start higher.)

I really empathize because I understand how you feel - here's hoping you can get some help with this!

Good wishes,
Joy

Hi Joy,

I figured out how to increase it myself, and I'll probably start it at 5.5 and see how that works. Right now my 90% pressure is 8, so maybe 6 or 7 is a better starting point.

Also, my new nasal pillows mask is the Swift LT. Anyone have experience with it?

brain_cloud wrote:

StephenP wrote:I'm here now. They don't have a hybrid mask. They are going to let me try a quattro.

Could this be a historic first-ever "live-blogging" of a titration study?

BC, I could put together a list of 25 cpaptalk members, any one of whom I would like to have as an advocate in attendance at my next night in a sleep lab.

But that will need to be in a future life. For this one, I will continue to self-titrate at home in my own bed.

SP, I would say you can self-titrate at home if you have enough desire. The software for that machine would help a lot.

Do get that minimum pressure up to eight or so right away and make sure the ramp is turned off.

I have been using CPAP for nearly five years and have become very comfortable with the mask and the entire process. However, if my pressure were set around six or lower, I would become very uncomfortable.

I think it is a crappy deal to send someone home to get acclimated to the process with pressure set at 4 - 20 (Echoing Wulfman). To put it nicely, you are dealing with medical professionals who have incomplete knowledge and experience.

This is doable, so relax as much as practical and keep working on it.

I have the Swift LT and can answer any questions you may have with it. How's it working for you? It's my favorite mask so far, though I really want to try the FX.

The keys to using the Swft LT successfully are using the right sized pillows (the larger, the better) and a loose fit so that you don't hurt your nose.

There's a great thread on the Swift LT here viewtopic.php?f=1&t=32164&st=0&sk=t&sd=a with all kinds of tweaks if you are having issues.

I had to do home titration with a few masks and an auto machine. If you are willing to experiment and tweak, it's much nicer (IMHO) than doing it in a sleep lab under artificial conditions. With your mimimum pressure set where you feel like you are getting enough air and a mask you can be comfortable with, the machine does the rest.

Hang in there, things WILL get better.

roster wrote:
BC, I could put together a list of 25 cpaptalk members, any one of whom I would like to have as an advocate in attendance at my next night in a sleep lab.

But that will need to be in a future life. For this one, I will continue to self-titrate at home in my own bed.

SP, I would say you can self-titrate at home if you have enough desire. The software for that machine would help a lot.

Absolutely, but it is also a good thing to have at least one in-lab titration, not even so much for the titration per se, but for the other possible issues that may come to light once the apneas are dealt with. Come to think of it, it seems the ideal regimen for suspected SDB folks would be:

1. Full night baseline PSG
2. Early notification of results & therapy education
3. Full night titration study
4. Acclimatization period at home using therapy (1-2months?)
5. Follow-up full night PSG to verify treatment effectiveness and titration validity

From then on, most folks could spot check their settings from time to time with apap.

Hi there,
sorry you had such a rough time of it. That must have been very hard to have things go so badly just an hour in to your
sleep study. It sounds like the tech there really cares about you, and the doctor situation should be sorted out soon. I hope so!

I was sent home with an auto machine after my sleep study, where they had not enough sleep time to even put a mask on me.
My pressure I checked on my machine is 4-20 too. I also use the swift LT. It was the only thing they offered me, but it seemed better for me
than a full face mask.
I learned to breath thru my mouth the second week however, so I began taping my mouth. I cough a lot, and cough up a lot of stuff, so
I just figured out a couple nights ago taping my mouth wasnt such a great idea. Im now looking into the hybrid masks.
Anyway, the only way I got thru the test at home titration was that I was pretending to be tortured.. That is THE ONLY thing that got me thru it.
James Bond, The Avenger, Jason bourne... you could be any one of those guys who got caught and tortured with an apap.
I know its supposed to be your new "friend" but if youre having panic attacks, the only way I could make sense of it, was that I was going to
put up wih it because I had to LIVE thru it.. That pretty much only gives you one choice... if you want to survive, you just get through it for
a week or two.. until you get used to it.. YOu can do it, you can over ride your subconcious anxiety if you think your life depends on it.. and it probably does.. so hang in there!

The whole PSG setup is not conducive to my sleeping habits, that's for sure. The first time was bad enough. With the mask, and being not used to it, well that's impossible.

I'm not normally THIS anxious about things, though. It's the sleep deprivation (from spending part of each night try the APAP) that's getting to me. Plus, I've been trying to improve my sleep hygiene and give up caffeine--I used to be a 2 p.m. coffee type of guy--afternoon tiredness has always been my worst problem. I can generally do pretty well in the mornings after I've gotten out of bed.

I think the real problem here is how valuable sleep is at this particular point in time. I am leading a very important project at work -- the kind of project that will cost lots of money and jobs if it fails. It's not failing, of course, but being functional the next day is very important. Having to adjust to CPAP now is bad timing. Too much pressure (the psychological kind). In fact, I was notified at 8:30 p.m. while I was at the sleep lab for my first PSG, that we had received the necessary documentation (and a completion deadline) to get this project started. We hadn't expected it for another month--so that night, for the 3.7 hours I slept, the technician recorded a heart rate of 120 bpm upon every arousal. But luckily, this project wraps on May 10. I'm flying to D.C. and back that weekend, and then I'll be back to my "normal" workload, so to speak. At that point, I'd be able to devote more than just an hour or two of trying to fall asleep with the APAP.

The Swift LT is the only mask I've tried so far that comes closest to allowing me to lay in my normal position, which is a hybrid of side and stomach. The only problem is that it's a nasal mask, which will require me to learn to stop mouth breathing. But the fact that my mouth and nose are still exposed to the open air is less stressful.

One thing I noticed just experimenting with it was that it seems to whistle as I'm breathing in, and make another kind of wheezing noise as I exhale. Is this indicative of the headgear being too tight or too loose? Or wrong size nasal pillows (I'm using medium--my comfortgel nasal mask if a small, FYI)?

Also, the DME told me after I get titrated he can put my machine in "CPAP Mode," and I think he mentioned changing out a card. Is this how it's done for my machine, or can it just be set in the clinician's menu? I learned how to change the settings in the clinician menu, so I'd rather just make the changes myself once I'm titrated, if that's possible. Also, is my machine data capable?

WEll geez, no wonder you freaked out, with that sort of pressure going on!

Sometimes its the things happening "off world" not in the realm of what the docs and techs see which effect us the most.

Glad you will be done with this project soon, that is a heck of a lot of stress, and your heart rate really reflected that..

I have the swift Lt too, as I said, but mine does not whistle unless the seal around my nose is a little loose..

I'm really glad you're not quitting! It's ok to take your time, just as long as you don't give up on cpap in general. And yes it's good to let life settle down a bit before you start embarking on the CPAP adventure... on the other hand don't delay forever as the CPAP will bring lots of benefits to you.

I had the same experience as Oscar98, so I still consider you VERY lucky that you have all this time to acclimate to the setup.

THAT said I strongly agree with what everyone else has said - you need to find a minimum pressure that doesn't make you claustrophobic, find the right mask etc... and get that anxiety under control. A good minimum pressure is one or two cm below your 90/95% pressure.

Are there perhaps some unresolved psychological issues related to hospitals, breathing equipment, getting tied up in cables .... that are causing you to be extra stressed at the hospital?