Horrible experience

[allenc3]

Well, I went back for a second Sleep Lab, this time besides all the wires, they had the mask on me. Tried the nose only mask 1st. That did not work at all as I would go to sleep and my mouth would open and I would wake up chocking. Reminded me of a time when I was in the military going through an escape and evasion course at Ft Hood Texas. We all got got water boarded. I admit, water boarding was worse, but it did not last all night long.

So the tech brings me another mask that covered my face. Better, but still uncomfortable,as hell I sure did not sleep very well. As a matter of fact, this was the most uncomfortable night I have ever spent. During Dessert Storm I spent the night in MOPP gear (gas mask and full body cover) after a Scud attack. Even that would not have been too bad except for the 110 temp. Maybe this won't be so bad at home without all those wires and things,

I asked the sleep tech if anyone ever passed a sleep study and not diagnosed with Sleep Apnea. He said not many, maybe ,1 in 10. 1 in 10, damn. This is almost a perfect disease. Almost everyone has it, it is apparently incurable and somehow backed by most Medical Professionals and paid for by most insurance companies. At this rate, soon almost everyone with insurance will get a sleep study, and thus have to buy a CPAP machine, Guess I ought to buy some stock in one of these companies.

I wish I was not such a skeptic, but at this point, the whole Sleep Apnea CPAP thing just doesn't pass the smell test. One day Medicare or some other agency is going to probably start looking at some of these diagnoses to see if they are all really justified.

Claude Allen

[FizzyWater]

I don't think I would have agreed to a sleep study if I hadn't already suspected sleep apnea - even my share of the cost (for the two nights) was almost $1000. So part of the reason why they don't get a lot of negatives is the cost is prohibitive for "just give it a try, maybe this is it".

On the other hand, I agree that the sleep study conditions really seem to contribute to the test results. There was almost nothing about the sleep lab that was how I sleep at home: I sleep on a wedge, I sleep on my side and they insisted I try to sleep on my back, I sleep with a fuller pillow....and all those bloody wires! And I thought it was ironic in a business that's trying to ensure you get the right sleep you need, they kick you out after only 5-6 hours of miserable sleep!

[Goofproof]

Those who get a sleep study usually have sleep problems, so the pool is running rich, that many tested do have a sleep disorder, just the method of testing tends to insure poor sleep.

The study is a little better than my last motel (Sleepy Bear kind), where the A/C had no moter bearings left and shook the room, and being a college town was overran with partying degenerstes that ran in the halls drunk all night.
I slept better in Viet Nam, All you had to worry about wes being overrun, and our 105's short rounds. Jim

[robysue]

I asked the sleep tech if anyone ever passed a sleep study and not diagnosed with Sleep Apnea. He said not many, maybe ,1 in 10. 1 in 10, damn. This is almost a perfect disease. Almost everyone has it, it is apparently incurable and somehow backed by most Medical Professionals and paid for by most insurance companies. At this rate, soon almost everyone with insurance will get a sleep study, and thus have to buy a CPAP machine, Guess I ought to buy some stock in one of these companies.

PSG's are expensive and the screening done BEFORE recommending an in-lab sleep test is pretty strict. As a result, almost everybody referred to a sleep lab for a sleep test is displaying strong symptoms characteristic of OSA. The vast majority of people do NOT have OSA and do NOT meet the screening criteria for a sleep test. That's why there's such a high "positive for OSA" rate on these tests.

I wish I was not such a skeptic, but at this point, the whole Sleep Apnea CPAP thing just doesn't pass the smell test. One day Medicare or some other agency is going to probably start looking at some of these diagnoses to see if they are all really justified.

Claude Allen

Medicare already has very strict criteria for diagnosing OSA. Some of us would not qualify under Medicare because our problem is with arousals due to sleep disordered breathing and not O2 desats.

It's time for you to actually look at the data from your sleep study. There are some 16 channels worth of data recorded during the sleep test. Each apnea and each hypopnea is scored only after multiple channels confirm it happened.

[JointPain]

It won't be as bad at home. Also, you might like to wear it a bit around the house while awake reading / watching TV so you start to get more used to it. You haven't slept with a mask on your face most of your life and it takes a while for your subconscious to accept it and let you get a deep sleep. Eventually your subconscious does accept it. It even becomes something like a security blanket.

[Mary Z]

Good luck to you and thank you for serving our country.
When you get a diagnosis of sleep apnea like any chronic illness there is a grieving process to go through beginning with denial progressing through grieving and ending in acceptance. We may end up back in any stage of the grief cycle at any time.
As you served in the Desert Storm I imagine you are a fit, fairly young person. A diagnosis of OSA has got to be a blow.

A night in the sleep lab is not anywhere close to a night comfortable in your own bed with a mask that fits. Hang in there. Hopefully whatever symptoms brought you here will improve and you will see the benefits of therapy.
Good luck.

[josh73]

Hey man, i completely relate to your experience in the sleep lab. The second night was the WORST sleeping experience of my life. THe first one was uncomfortable but at least i didnt have a mask on. I go into the second sleep lab night for my titration and it started going badly when i was trying masks. I had no idea how bad the pressure felt. I tried a nasal mask first and it freaked me out. I started feeling anxiety and had to take a break. I didn't know that i had to keep my mouth shut! The sleep tech then put a full face mask on and that helped. The rest of the night was awful and it felt like i slept 20 minutes the whole night. I can tell you that once i started cpap therapy at home, it was much better. No wires and wax all over my head. I was able to stop the machine and not feel like someone was watching me, which freaked me out. I've been doing CPAP since 1/13/12 and it is MUCH better now. Thanks to this forum, i was able to download software to analyze my treatment. I also got tips on fitting my mask properly and my AHI average is 4. All i can say is that, in my experience anyway, that it does get easier. It's not great, i wish i didn't have to have a mask on every night but i no longer fall asleep at my desk at work and have been gaining more energy. Good luck.

[HoseCrusher]

Claude, one way to independently verify what is going on with you is to pick up a recording pulse oximeter. If you see wild fluctuations in oxygen levels and pulse rate without xPAP, and then they settle down with xPAP, you can rest assured that this therapy is helping.

In addition, you can review the air flow data from your xPAP machine.

[chunkyfrog]

Doctors do not generally refer a patient to a sleep study unless they believe there is a high probability
the patient has a sleep disorder. This works against the patient who does not "fit the profile"--yes there is a profile--
but it concentrates on fairly obvious signs. These obvious signs save the insurance companies money,
as few are diagnosed as not having apnea, but it is believed that perhaps only a tenth of the people
with apnea have been diagnosed.
This means that out on the highway, for every driver that is using a machine,
there could be nine more who don't even suspect they could be a threat to YOUR life.

[sapphirerose]

My first sleep study was so uncomfortable and I got so little sleep, almost all of it stage 1, that I refused to go back for titration, so my sleep doctor did at an home titration.

It has made a world of difference being in my own bed with my own machine and a mask my DME carefully fitted instead of the sleep clinic tech trying to tell me that I needed nose pillows two sizes larger than what I use because we have to make sure that they don't leak.

I already feel better having gotten my machine in December. My data is good, but I have a little more daytime sleepiness right now. I think I am still adjusting to being allowed to sleep well.

I didn't believe that she could have possibly gotten enough data to prove I had sleep apnea that first night, but the reality is, that I can feel the difference and I have to accept my diagnosis. I also saw the report and I had apneas even in stage 1 sleep.

I had a hard time accepting my diagnosis because I do not snore. Now, my husband also has sleep apnea and he snores like a bear if he doesn't wear his mask. Him, I could believe, me I had a little more trouble with it.

Get your doctor to give you your report and give treatment a fair shake. That means don't give up if the first mask doesn't work or if you need to buy a new pillow or take off your mask in the night. Just put it back on and keep going. It will get better.

My husband told me that intially he had all kinds of problems adjusting, but now he puts on his mask and drops off because the mask signals sleep the way that the bell signaled food for Pavlov's dogs.

[cowlypso]

I agree that most people who go in for a sleep study are the ones who very likely have something wrong with them. Insurance won't pay if they don't strongly suspect something is up.

My insurance company had a list of criteria that you had to meet to qualify for a sleep study. It turned into a huge problem for me because I did not meet enough of their criteria. I had excessive daytime sleepiness, but no snoring, obesity, high blood pressure, heart problems, etc. My doctor had to actually talk to the doctor at the insurance company and discuss the medical necessity before it was approved.

With standards like that, of course just about everybody that makes it through the initial screening process will come up with some sort of a problem! But if you were to run a research study and just select random people off the street, you would see a lot lower incidence.

[allenc3]

I was referred to the sleep dept of the hospital as part of a pre-surgacal clearance (am have a lap band procedure. This along with an Endoscopy, Colonasopy, Echocardiagram, and more forms than I ever want to fill out. Of all the tests and procedures envolved, this sleep thing has caused the most grief. I don't snore, BP is 120/70, don't fall asleep in the daytime or any of that stuff. Now I am going to have this diagnosis tagged to me for life, and if you don't think that in itself won't cause a problem, don't let your insurance lapse.

By the way, I am Medical Professional. I am a Medical Technologist (Transfusion Specialist) and have worked in and around Medical Laboratories and hospitals sence 1972. I never even heard of sleep apnea until around 1990 or so. Don't believe the 1st CPAP machine was even on the market until about 1985 or so. All this stuff is kind of new. Wonder what happened before 1990. Don't remember people coming into the ER complaining about snoring.

At this point I just don't know what to think.

Claude

[RocketGirl]

Allenc3, Robysue has given you valuable advice - look at the actual results of your sleep test. It will tell you exactly what you are up against. I don't snore either, and my bp is usually 110/70. I had to beg for a test because I was so painfully sleepy. My first sleep test was a nightmare start to finish, but even so, the data there and at the titration study (with mask) told the tale clearly enough. If you look at the actual numbers from your sleep study, they'll either confirm or refute the diagnosis. If those numbers aren't convincing, then you should talk with your doctor about it, definitely.

As far as what happened pre-1990, well, if my family is any gauge, they went along with their lives, sometimes rattling the rafters with snores but unsuspecting and undiagnosed, and they stroked out in their 40's and spent the last decades of their lives completely dependent upon other people for everything. (And I do mean everything.)

[NateS]

allenc3,

A lot of this skepticism would be avoided if they would just GIVE everyone a copy of their lab report instead of waiting until you ASK for it.

I too was very upset with the lab experience and very resistant to the whole idea until they finally sent me the lab report. Once I read it and did all the online reading and research, I was convinced I had a legitimate problem and I accepted the situation and have adapted and am glad I did.

I urge you to ASK for a copy of your complete report, read it, review it and then come back and feel free to even put the whole thing up here if you want to. Photobucket is free and allows you to white-out your name and other ID before you reference it here online.

Best regards, Nate

[chunkyfrog]

Seconded, Nate.
I would even make a more visual summary that even non-techies would understand.
Maybe multimedia, including video of apneic incidents. make them watch it before they can decline treatment.
"--this is what happens when you are sleeping without a machine."