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It's interesting that you say that about the sleep lab. I'm beginning to think the same thing myself of this one. I think that this is nothing more than a low budget operation that brings in a huge profit for somebody.
I've been thinking about my original study and there are some things that are bothering me. For instance, I fully, consciously awoke twice in the night because the tech was in my room getting something out of the cabinet. When I asked what she was doing, she said that she'd 'come in a few other times as well, but had "timed" it better and I hadn't known it'. So, I'm thinking that each disturbance (even though I wasn't conscious) was probably registered. That seemed odd then and even odder now.
Another thing is, I've never met the doctor that is supposedly reading these results and deciding the treatment. I think that I should have been able to meet him and talk over the results etc. For all I know, he's just some Internet "doctor"! And, after I called them to see about lowering the pressure, I did not hear from them until I called back and said I was returning their machine. Suddenly, a minute later, I got a call back. (Amazing) I told her what I'd learned about different machines and masks and she said that they 'didn't like to confuse people with all the choices out there and that since I'd slept all night with this mask during the study they saw no reason to change it'. Well, I had to inform her that I'd ripped the mask off during the night because I couldn't exhale and was told that I had to put it back on or leave, because the study called for atleast 6 hours with the mask.
Then there's the 2 minute tutorial on the machine. No explanation of how to clean it, when to replace anything, how to know if it's not working right, who to call with a question, nothing.
I'm returning the machine today, during the convenient (?) hours of between 9 and 12. I have my appt. with my GP on the 18th to discuss this whole scenario. I haven't given up, I just don't know these people and now don't trust them. As if this wasn't a big enough issue to deal with, I'm expected to deal with this type of treatment, too? This has been the most frustrating experience of my life. Truly.
I feel as though this place is really just in it for a quick buck. I mean, since the machine is non-invasive therapy, it would pretty hard kill someone with a bad diagnosis so it's pretty safe to just dole out machines and get paid by the insurance companies.
Is there somewhere where I can lodge a complaint about this? I would really hate for anyone else to go through this with these people. I have already told my rhuematologist that I wouldn't recommend he send anyone else to this lab, but there should be a more formal place to log this.

Please keep us informed on how this goes for you. You were really sold down the river. No wonder it has been such a horrible experience for you! This is pretty much as bad as it gets.

1. You need to be able to TALK with the Dr who is prescribing the treatment and know your condition and what he is doing to correct it.

2. You need a machine with exhale relief (CPAP) and data recording capability so you can monitor your own progress.

3. You need to be given choices of masks and instructions on how to use them. They should let you try on several of them. If it works for you, a nasal pillow will be much less cunbersome.

4. You need a response when you call to ask questions.

Now that you are better informed you can ask for these things up front and not just be stuck with what they give you. Once you are going again with a better setup we can help you fine tune it. This WILL get better for you!

Sam

SleeplessinCLE:


POINT: It is possible to get the benefit of CPAP even if your medic and equipment vender are uninformative, uncommunicative, unsympathetic, or plain unavailable. (I'm sure I've forgotten some un-s.)

My GP ran me through a screening questionnaire after I complained of daytime sleepiness: 3 minutes. When I "passed", he referred me to the HMO's sleep department. I watched a 10 minute vendor equipment promo film about Sleep Apnea. A tech wired me for a home sleep study: 7 more minutes. Ten days later, the sleep specialist called me with the diagnosis: "Yup, you're suffering from sleep apnea, someone will contact you about treatment." 2 minutes. The DME technician rushed me and another sufferer through an almost useless introduction to CPAP: 15 minutes. That's a total of 37 minutes of "professional" involvement from start to finish.

As you can see, a lot of un-s that could really get in the way -- if I let them. I didn't, and I'm getting my life back. You don't have to, either -- and you can have your life back, too.

POINT: If you have a partner, you both suffer from this disorder...

...and you both stand to benefit from the treatment. Yep, getting the benefit takes time and patience -- for you both. It took me more than a month on CPAP to figure out I was mostly on my own with respect to professional help about the details, to find forums such as this, and figure out things like how to adjust my mask that works for me.

POINT: It's inconvenient, awkward, demeaning, and unromantic to wear the mask.

...but, well, it could be a lot worse, for example, ...Use your imagination. It could be MUCH worse.

POINT: You are being forced to join a group of nut cases who trade testimonials about machines that go oom-pah in the night, tips about scary-looking masks, recommendations for odd pillows, straps, ...what is this, an S&M club or something?

Hmmm, yes, to a certain extent you have fallen in with a new crowd of people. ... most of whom seem a bit giddy about having their lives back. Some seem VERY giddy, and rightfully so!

While the subject material in these forums seems a bit odd sometimes, people are welcoming, don't attempt to force you to any particular viewpoint, and don't shame you for ...anything. You can come and go as you please, take away what you need, and contribute what you can.

Bottom line: Keep --and improve-- your sense of humor; that will help a lot.

Good luck!

Henry

I hope you are able to switch machines - I had a similar feeling when the c-flex was at the wrong setting for me.

I love my nasal mask - I got really lucky - I picked it out from a photo in the doc's office. I saw the full face masks and I hated how they felt in the sleep study plus it leaked and squeaked. I had sore nostrils (nares) for a week but now they have toughened up at the mask is totally comfortable. even though I was a mouth breather (partially, I'm sure b/c I was getting enough air through my nose) I haven't had to tape my mouth or anything and my AHI is under 2.

As for the sexiness issue - if you feel sexy you are. I'm not what would be considered "traditionally" attractive - so perhaps i don't have the same vanity of someone who is used getting positive attention for their looks. We love each other and have plenty of lovemaking and romance after 12 years together. In fact since APAP I have been much more of a Romeo - in the past all I could do was fall into been for another rotten night of sleep - now I have the energy to stay up and make wonderful love.

Since my OSA was severe I was THRILLED to have a solution to my inability to sleep for years and a reason for my hypertension. The first week with the machine was rough but now I actually look forward to sleep. I don't go to bed until I am ready to go to sleep (or for intimacy) - and I find that I fall asleep within 5 minutes of putting on the mask. When I have been awake in the middle of the night (before taking 1/4 mg of melatonin which is enough to get me to sleep through) I try to just lie there and relax and think pleasant thoughts instead of agonizing that I'm not asleep. Soon enough without tossing and turning I am asleep. If you don't want to try melatonin perhaps the homeopathic rescue remedy sleep will work for you.

I had the machine on the shelf behind our bed but have moved it to the partially closed drawer of my nightstand and the noise is much better for my beloved. You can also put it closer to the floor and that will make it even quieter. We also have a king size bed which is necessary since we are so generously proportioned as is our 90# rottweiler mutt who sleeps with us. Btw he is not bothered in the least by the machine.

I hope you will be able to make peace with being a hosehead and do the tinkering necessary to get the equipment that works for you.

sleepless....



If the lab is an "indie" (freestanding...not affiliated with a local hospital) I think I'd talk to the better business bureau. If the lab is either in a hospital or affiliated with a hospital, start with the manager and work your way up. Tell them you are extremely concerned with the lack of quality and professionalism, and you are going to complain to all your friends and family.