Useless Sleep Tests

[Guest]

Hi, all - newbie here. I believe I've had sleep apnea for 10 years, untreated. I haven't had insurance, and haven't been able to afford treatment. I finally have insurance. I went for my first sleep test back in February. I was unable to sleep the entire night. I move around a lot in the night, and kept getting tangled up in the wires. I only slept for a total of 30 minutes all night, in 2-3 minute intervals. The attendant said she didn't see any signs of apnea, and my neck didn't fit the measuremnt criteria (1" too small) but I was later diagnosed with sleep apnea anyway.

I'd been using the CPAP for about a week when I went to take my second test. Again, I was unable to sleep. I had asked if I could take a sleeping pill, or stay up the night before to prevent being awake all night again, but they refused to let me do that because it wouldn't be normal sleep (What's that saying about doing the same thing and expecting different results? ). Again, I slept a total of 30 minutes. I haven't gotten the results from that yet, but the attendant said he thought I wouldn't need much of an adjustment (it's currently on . I've been using my CPAP faithfully all night, every night for a month now and am seeing no difference. In fact, I wake up in the morning feeling like I need to catch my breath. I don't feel like I'm getting enough air. I said this before the sleep study and was told I just needed to adjust, but it hasn't gotten better. I have asthma, and I breathe through my mouth during the day - I don't understand why suddenly at night I should only need to breathe through my nose. I can (and do, a few times a night) get extra air by breathing in through my mouth, but I can't exhale through my mouth (or talk with my mask on), and I don't know if I'm inhaling through my mouth while I'm asleep or not. I doubt my cheapskate insurance will cover an apap, and, being a college student, I can't afford to purchase one without it. I feel so helpless and stuck between a rock and a hard place. I can't prove I need something different from my current setup becasue I can't sleep through a sleep study. This is so frustrating. Thanks for any advice you can offer.

[Less Sleepy]

Call your DME, and call your doctor. You would benefit greatly from using a data recording AutoPAP. It may not be the gold standard of CPAP titrations, but it certainly would be better than nothing. That would get you closer to what you really need. If APAP works for you, you could just stay with it. Otherwise, it will get you some steps closer to where you need to be.

I never thought I would hear of someone doing even worse in a sleep study than I did, but you have me beat!!!!! When I got my first study, I was expecting another woman to be my sleep tech - and this guy comes out and introduces himself as my tech for the evening. You have to understand that before this, only two men had ever tucked me into bed: my father and my husband. So, this guy I'd never seen before was going to hook me up to a bunch of wires, tuck me into bed, watch me on a camera all night, and help me up to the bathroom if (more like when) I needed to go. I very quietly freaked. The tech was actually pretty nice to me.

I slept all of 93 minutes during each of my first two sleep studies. The diagnostic study picked up 38 events per hour. One of my doctors expressed that my situation looked so bad with only 93 minutes, and no REM. The first titration study came back with a diagnosis of failed titration. I was so discouraged I cried. I'd already had an accident from falling asleep at the wheel of my car, and I felt I was staring total disability in the face.

Fortunately, I did get a CPAP, and a trial of APAP when I wasn't doing well. My pressure was increased from 8 cm to start with, ultimately to 16 cm. I didn't do very well with APAP, although, it may have been because it was with a RemStar Auto, which, while being a fine machine, does not respond that well to hypopneas - my primary problem. After 6 months, I was retitrated for a BiPAP. Again, I started having trouble falling asleep. With my experience on CPAP, I realized that that I was falling asleep, but the pressure was much too low, and I was waking up from an apnea almost before I could really fall asleep. I was also air-hungry. I asked the tech to raise the pressure, because I was concerned that I wouldn't ever get to sleep with it set so low. He did, and I slept for 4 hours. Not exactly a good long night's sleep, but at least I got a reasonable titration.

Turns out, even that was significantly too low. My titrated pressure was 13/9, and it has been increased to 17/13. I think that titration pressures tend to run low if the patient isn't sleeping well. You never completely relax as you do at home. So, if you're not doing well, call your doctor, your DME, and complain.

[johnml]

when i went for my sleep study the tech told me i could take a sleeping pill as long as i had eight hours left ( they couldnt let me take one after the eight hour limit to limit their liability ) he told me it has no effect on the test... i dont think i would have been able to fall asleep without it !!!

[frequenseeker]

With asthma you probably need bipap. And make sure you have a machine that will give your nightly results so you can know for sure if your treatment is right and can monitor your response if you need to fine tune it to get better results.
If your doctor stipulates this kind of machine (VPAP III is best), your insurance should pay. Rent is best at first if you can for trying the autopap and c flex systems first if you want. If you have more of a hypopnea than apnea problem the autopap may not be as good as the bipap.
It may be that the bipap and your asthma diagnosis will have better insurance acceptance to pay for something more medically necessary and justifiable to them. Depends on what standards they use for guidance.
What kind of mask are you using, is it working for you?

[dizzy]

forget the sleeping pill and all the hassle associated with it, take 2mg melatonin before you get to the lab in the parking lot, then don't tell anyone.

works like a charm every time

[pappy]

same thing happened to me when i went for the sleep studies. it felt like i only slept about a half an hour on both of them but i was told that they had enough for a diagnoses of severe osa and i was started on cpap. After seeing just how big this "business" of sleep apnea has become, i'm beginnig to wonder about how they could diagnose something that important in such a short time?

[CollegeGirl]

FYI, the original "guest" was me. Okay, so should I ask for a new sleep test (in which I take a sleep aid) before I try a different machine? Or should I just talk to my DME/doctor and ask to try an autopap? Or should I ask to try a bipap? It's a little confusing. Thanks!

By the way, I read posts about mouth leaks, and decided to try taping my mouth. Well, I woke up with an unbearably cold nose! Guess I need to try taping my mouth and using my heated humidifier (I hadn't been using it because it actually seems to make it harder for me to breathe).

By the way, this was probably obvious to everyone but me, but..

Never, ever use duct tape to tape your mouth shut. I woke up looking like I was into some interesting extra-curricular activities.

[CollegeGirl]

I missed that you asked what kind of mask I'm using. I think it's a Respironics. It's a "Comfort Classic." Just about the most uncomfortable thing I could imagine (which adds even more credence to the battle cry "don't use anything with 'comfort' in the name!" I've seen here), but it stays sealed pretty well if I sleep on it in a very specific way. The red marks on my face in the morning are definitely sexy, though. Let me tell you, that is *just* how you want to look when you're a 26-year-old single college student. But, health is more important than appearance any day. If I could get some actual rest, the red marks would be well worth it.

[rested gal]

I've read many times that Ambien is safe to use to be sure one is able to sleep during a sleep study -- and will not interfere with the results. (I'm not a doctor, though!)

CollegeGirl, thinking back to my college days (a very long time ago) I don't know how much extra money you have, to make cpap treatment comfortable.... but if there's any way possible, I'd be getting a different mask right away, if I were you.

The Swift (nasal pillows) might be the best one for you to try if your DME won't let you try another mask and you can afford to buy only one mask yourself, out of pocket. Comes with all three sizes of nasal pillows.

If you want to try a different nasal mask (covers the nose) the Mirage Activa by ResMed is very, very good. If you have to guess at a size, I'd suggest the "shallow" - seems to fit most women better than the "standard" size does.

Online cpap supply stores offer much lower prices than buying from a local bricks-and-mortar DME. You might also keep an eye out for masks on Ebay and Yahoo auctions.

Making yourself a mouthguard a la frequenseeker's "DIY" device might stop the mouth air leaks:

On page 3 or thereabouts of the link you can click below, I posted clickable links to a lot of old topics - discussions of trying to stop mouth air leaks and lip puffs, and other ways to try to "train" the tongue to hold a seal on its own.

Topic started by frequenseeker Dec 01 2004 subject: mouth leak solution, cheap DIY oral appliance

If you continue with tape, the tape I use is Johnson & Johnson waterproof adhesive tape - the two inch wide size. I have to use two slightly overlapping strips of that to make a tall enough "patch" to seal well above and below the lips. The strips should be cut long enough to go a couple of inches beyond each corner of the mouth. Turn down a bit of each end, sticking the end to itself for a handy "grab tab". Be sure face is absolutely clean and dry before applying any tape. I tried duct tape once, too. Removing that...well, once was enough!

Good luck! You sound like an enterprising lab-rat. And a determined one. That's a great trait for any of us who are on cpap treatment!

[rested gal]

CollegeGirl, I'd try to get an Autopap machine, if I were you. Then get the software for it, and you'll be in a much better position for handling a bigger role in your own treatment, imho. Having an autopap with software is like having a machine that gives you a mini sleep study every night, automatically finding the correct pressure for you through varying sleep positions and varying conditions.

Below is a link to a powerpoint presentation by a sleep doctor who advocates that autopaps be prescribed instead of sending people for a sleep study in some cases where it's obvious they have OSA. While the reasoning is targeted more toward people who do not have insurance and cannot afford a full PSG sleep study, the reasoning can also be applied, imho, to other situations, too.

A link posted by Mikesus on cpaptalk in March, 2005:

Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004

That smart sleep doctor is:
Barbara Phillips, MD, MSPH, FCCP
Professor, Division of Pulmonary Critical Care and Sleep Medicine
Director of the Samaritan Sleep Center
Department of Internal Medicine
University of KY College of Medicine
Lexington, KY

[Vix]

CollegeGirl -
You say that you regularly breathe through your mouth, even during the day - you should get a full face mask. It will cover both your mouth and nose, and you will be able to breathe through your mouth when you sleep. If you currently have a nasal mask and spend a portion of the night breathing through your mouth, or letting air escape through your mouth, you are not receiving the full benefit if the CPAP. Speak to your MD or the DME company that set you you up about being fit for a full face mask.
-Vix

[CollegeGirl]

In case anyone's curious...

I called my DME for an appointment today and told them what was going on. They told me to call my doctor and ask for a prescription for an FFM, and for a titration range to be added to my machine (6-10). My doctor didn't want to do it (the range part) because he said "Your titration study showed you only need a 6!" Well, duh, I barely slept. Luckily, the DME person was willing to call him and explain to him that if I'm waking up gasping for air, something's wrong with my titration. Yeesh. Thank goodness I'm about to go home for the summer and can start seeing a real doctor instead of this college health services putz.

I went in to the DME today and she tried several FFMs on me until we found one that fit the best. It's a FlexiFit. I spent all night tonight adjusting it so it wouldn't leak, but I'm hoping that it's just a matter of getting used to it. I had to do that the first night I had my nasal mask, too, but after a while it didn't leak as much. So, I'll try this setup (my titration is now at 10) for three weeks, and if that doesn't work, I'll start telling them I really think I'd like to try an apap (I mentioned it today, but agreed to try this first)..

[Less Sleepy]

Sounds like you got an angel for a DME. A rare breed. Hang onto them. Ditch the "doctor." I don't understand how he could think your titration was adequate with only 30 minutes of fragmented sleep. Was he a real sleep doctor, or just a family doctor trying to play sleep doc? The pressure of 6 may have been suggested to help you adjust to CPAP, with another (hopefully more successful) titration in the future.

I envy you being treated so young. I wish I could have been diagnosed and treated while I was in college.

[TASramon]

Question; the statment about getting only about 30 Minutes of sleep, is that your opinion/observation or did you get that figure from the results of the sleep study?

Glad to see that you have gotten a FFM. Let us know if it works for you.

Sleep well,
Ramon

[CollegeGirl]

Ramon,

That was the actual result from the sleep test, as reported by my doc. Thirty minutes total, 2-3 minute intervals.

You would think that after the first sleep study where I didn't sleep, they would have let me take Ambien or something. But, no. Grrrr.

I slept with the FFM mask on last night and I actually feel rested and awake today. It's amazing. I really, really hope this keeps happening!