bad sleep study experience

Swordz · Post by **Swordz** » Fri Oct 20, 2006 2:35 pm

I would in all honesty get a sleep study and get it scored correctly. My Dr. wouldn't score my latest study without the proper amount of sleep time.

A "home test" might sound like a good option, but I would steer clear. A professionally diagnosed sleep study can diagnose other problems a home-test can't: PLMD, RLS, etc.

Leave the doctor stuff to Dr's, but go in a knowledgeable patient. Know your treatment and know your options.

Guest · Post by **Guest** » Fri Oct 20, 2006 5:11 pm

joepro7 wrote: I am disappointed and frustrated with the "sleep centers" around here, one cancelled an appointment on me (that I waited 3 weeks for) the day of the test, and in the test I took, the walls were thin, a bright nightlight was used so their camera can record my positions, and they set up another patient in the adjacent room for 1/2 hour (talking etc.) while I was trying to sleep.

...

and when I searched the web and found reputable sleep centers, the University of MD for example, they require a consult before doing any study, and my appointment is not until Nov 27 (earliest!) and then I will have to wait two weeks after that to actually have the study... and if I can't sleep enough during the study, here we go again! anyway sorry to vent, and looking for hope...

My first test was at a world renowned hospital in downtown East Baltimore in the late 80's. It was a horrible night. Hot, bright, 'hospital-like' - I hardly sleep. They claimed I slept enough, I'm sure I didn't. The tech kept yealing at me when the leads would keep coming off, saying "Stop pulling these off!" It was a BAD night. I never got a copy of the test.

So, I thought I was fine. Now, almost 20 years later, I went to a great sleep center in MD. It is actually a converted house (a rancher) with only 3 bedrooms in a semi-residential area. Yet it is part of a large network of sleep labs and DRs in my area. But the other labs are in hospitals.

This was like 'going over to aunt sally's to spend the night.' They were courteous, explained everything, and it had none of the HOSPITAL like environment. They were extremely accommodating and I can't say enough.

By the way they found my apnea with no problems and I slept as good as can be expected, which suprised even myself. Especially after my first experience.

If you want more info just PM me.

Thanks.

joepro7 · Post by **joepro7** » Sat Oct 21, 2006 8:45 am

I would very much like to know of the sleep center you talk about, but I can't PM you because you are a guest (the button isn't there!) If you could post the info or PM me with the info I would appreciate it much!

ThunderSnorem · Post by **ThunderSnorem** » Sat Oct 21, 2006 12:36 pm

I don't know what happened with my last 'guest' post, I couldn't log on and say it was me. SOmething funcky woith the system last night when I posted.

PM will be sent

Guest · Post by **Guest** » Wed Nov 01, 2006 9:32 am

Just an update for those watching... My sleep study came back and said no apnea. Since I made them turn the light off they said in the report that I slept on my back all night, which was incorrect (they couldn't monitor my position). I convinced my GP that the study was invalid and luckily my insurance covers a 2nd opinion so I can have a repeat study, which is tomorrow. In the meantime I went to a real sleep doctor and he read the report and said I have no apnea. Finally (and he is the first doctor to do this) he looked down my throat and said my tonsils are huge, and I quote "you have sleep apnea, and you snore a lot, the report is wrong." He also said that based on the difficulty I have getting to sleep I will likely not agree with a CPAP. He then recommended I take ambien for my sleep study tomorrow and he will get the results and likely send me to an ear-nose-and-throat guy who will take a look at my tonsils. He said that I have a much smaller throat opening that normal. All depends on whether I can sleep on my back for the study. Wouldn't it be crazy if all these months of frustration and exhaustion can be corrected with a simple tonislectomy? Has anyone heard of that working (or not?)

joepro7 · Post by **joepro7** » Wed Nov 01, 2006 9:36 am

I forgot to login, that last "Guest" post was mine...
Joe

ozij · Post by **ozij** » Wed Nov 01, 2006 10:00 am

Joe,
There's been more than one poster on this board who had huge tonsils that disturbed his breathing at night. Tonsilectomy in adults is apparently painful, but seems to be the treatment of choice when those gigantic tonsils narrow your airways.

The air pressure blown in by an xPAP can't combat the narrowing caused by big tonsils.

Use the search button for "tonsils" or "tonislectomy" (without the quote marks) for more info.

O.

CSA0890 · Post by **CSA0890** » Wed Nov 01, 2006 1:06 pm

As far as insomnia goes I don't know about everyone else but before I was on CPAP it took me at least 1 1/2 to 3 hours to fall asleep then I would wake up about every 30 minutes. But now it only takes me 30 minutes to fall asleep and last night I only woke up twice !!! I think it has relieved me of feeling so anxious about going to sleep.

sleepinsilly · Post by **sleepinsilly** » Wed Nov 01, 2006 3:43 pm

Tons of good comments.

For what it's worth, I saw my md yesterday. As we were talking about "things," he started discussing pressure and said that he determined my setting at the third hour, which he really does not like to do. (I was so bad I think they scared and put the equipment on.) Typically, they monitor patients for one night and titrate for one night. So I would think that 140 minutes is really not enough.

I see you are near MD. It's a hike, but if you're really frusrtrated, try the sleep center at Morristown Memorial Hospital in Morristown, NJ (about 4 hrs from DC). ?? Are we allowed to do this? Anyway, they are great and the doctors are expert. Staff is fantastic. You might want to think about long-term, though. It might not be convenient to come up for a followup visit. But maybe they could work something out with you.

?? Hope that helps.

joepro7 · Post by **joepro7** » Wed Nov 01, 2006 5:11 pm

I have an appt in Baltimore for tomorrow night, and I'm fairly confident in the place (did my homework this time!) I think one of the best take-aways from all of your comments is to make sure I get a firm diagnosis and that I eventually understand (and that the doctor does too) where the obstruction is and to understand all of the options for treating it. And to not jump at surgery unless I'm convinced that it will work long term (which could be a tough sell.) I did a search on "tonsils" and saw some interesting stuff, like a poor success rate. I also don't fit the profile, I'm active in sports and not overweight at all. Which seems to make treatment options more complicated since most of the "treatment procedures, rules and logic" seem to apply better to those who meet the profile.

I have that feeling too that if I could breathe easily on my back I would fall asleep rather quickly.

Thanks again for your help,
Joe

jskinner · Post by **jskinner** » Wed Nov 01, 2006 6:06 pm

joepro7 wrote:I recently had a sleep study (results not in yet) and got a total of 1 hour and 45 minutes of sleep. Do you think I am going to need a retest?

Yep I think you need a retest. During my first sleep study this year I sleep a total of 120 minutes with a resulting AHI of 11. My second study I slept a bit better (3.2 hours) resulted in an AHI of 22.1. When I finally got an night sleep at the lab with some REM my AHI was 55.2.

Apnea gets worse in REM so you really don't have a good indication of the potential problem if you don't have a good sleep.

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