Screen your sleep lab when evaluating your insomnia

Insomnia plagues me. In that, I’m no different from millions of other Americans. But I am different in that I sought supposed experts to help me deal with this situation. My experience proved to be a nightmare.

First, I believed my sleeplessness due to the fact I feel “on,” all the time, doing too many things in the space of 24 hours. In my earlier career (teaching), students’ faces swam in front of me, at night, and often, I played back the day’s troubling scenarios. Then, too, there were the inevitable family problems: a child breaking curfew, another with an attitude. I never kept anything in the moment but projected to the extreme, fearing the worst.

When I became a realtor, I worried into the night: “Did I have all documents necessary for the next day’s closing?” “Did I call the water department? “Did I remember the smoke certificate?” The reels played in my mind, non-stop, and I couldn’t unwind.

When I mentioned my trouble sleeping to my doctor, he cautioned that it was not just inconvenience; it could affect my heart. He suggested sleep lab, where they monitor a person’s duration and quality of sleep. With that, I signed on … sleep lab would tell me, once and for all, if I were sleep-deprived.

I reported at my pre-appointed time of 11:00PM, with pillow in hand. My husband accompanied me, and we two sat in the waiting area, as friendly facilitators met their assigned people and just as quickly spirited them away. Since I was last to be met, I feared I drew the short straw—the unprofessional runt of the team.

Sure enough, he came shuffling into the waiting area, looking like he wanted to be anywhere else. He introduced himself as Bruce. I said a nervous “Good-bye” to my husband; we parted, and I followed “the Lackluster One” to my room.

It was an austere cell, devoid of creature comforts. No television, no side tables, no lamps for reading. The basic closet and queen-size bed fitted with white sheets and a thin blanket suggested my time there was to be “all business.” I was apparently there, to sleep “on command.”

I asked where the bathroom was and Bruce informed me it was “down the hall.” I excused myself to use it and popped the half tab of Ambien I’d been prescribed at the orientation meeting a few days earlier.

When I returned to the room, Bruce lathered me with gobs of viscous gel, connecting wires to me all over. He then said a peremptory “Goodnight,” snapped off the lights, and the fun began.

I lay in the dark, tossing and turning, trying to get comfortable, cursing myself that I didn’t, i) check the physical lay-out of the place beforehand, ii) insist on a room with bath (others had that), and iii) specify my monitor be a woman–I never knew a man watching me as I slept would bother me—but it did.

After 90 minutes of “awful,” I called out, “Bruce…I’m afraid I need to use the bathroom.” He came in, disengaged me from the wires, and I went to and from, wondering when I’d need to repeat the activity. Bruce hooked me back up.

An hour later, claustrophobia kicked in. Bruce had become “Igor” (in my mind) and I now viewed him as warden, watching my every move. I could see his extension, “the eye” of the camera in the corner, even in the dark, and I knew he could see me even better. I wished I’d taken the whole Ambien.

I heard the disembodied voice: “Is something wrong?”

I said, “Yes, I need to use the bathroom … again.” At this point, I would have welcomed catheterization.

Back in the room, I said, “I never have this much trouble sleeping at home. Do other people have problems with this?” Igor answered flatly: “No, not really…” End of discussion. Now, I was really angry (for his lack of empathy), but I swallowed my pride and got back on the rack.

Two more hours went by with me alternately kicking off and rearranging bedding; I’d counted the slats in the blinds; clocked the night sounds of those around me; and generally staved off mounting hysteria.

Again, the voice: “Are you all right?”

I said, “No, you know what I need (to do),” said like a drug addict wanting his “fix.”

This time we didn’t even bother with chit-chat.

Another hour ticked by with me not sleeping. Finally, I said (to the camera): “Look, this isn’t working. I need to go home.”

Now, Igor played hardball: “Well, we need another 60 minutes minimum. If you leave now, Blue Cross won’t pay.”

I asked: “Did I sleep at all?” (I’d begun to think the whole experience a huge nightmare).

Igor’s answered: “45 minutes.” I wondered where that happened in the spate of bathroom visits.

My return volley: “OK, I’ll stay but you need to come in and unhook me. Just put on the light…you do whatever…and I’ll never tell.”

That’s how my last hour of sleep lab went. When I left, I walked out the door with another woman. When I asked: “Did you sleep?” she answered, “Hell, yes … I took enough meds to drop an elephant.”

I cursed: “Damn, I didn’t know you could do that. Why do I always learn these things too late?”

Sleep lab couldn’t evaluate my sleep patterns in the short space of time I slept. On a positive note, I’ve since spoken to many who’ve had wonderful experiences at their particular sleep lab where surroundings were condusive to sleep (some mimicked comfortably-appointed hotel rooms), patients could read or watch TV, and monitors put them at ease.

Screen your sleep lab, check out the conditions, and ask the questions I didn’t, ahead of time, to afford yourself optimum results.

Colleen Kelly Mellor blogs from the perspective of a chronic patient at Encouragement in a Difficult World: Biddy Bytes Blog.

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  • docguy

    sounds like they need to repeat the study on their dime.

    • http://www.biddybytes.com Colleen Kelly Mellor

      Except “docguy” that would mean I’d have to put myself in for more abuse (like a retake). It’s like the time folks suggested I force a mason to do over his faulty brickwork in my driveway. He failed miserably by using the wrong consistency. People asked: “Aren’t you going to have him come back and fix it?” But I reasoned: Why have this person who didn’t get it straight the first time muck around to do it another time?..I’m even less interested in going this route when it’s my body…To my way of thinking: I’ve alerted the facility; I went in and conveyed my thoughts personally, and now Ive written this up with a serious CC to them to find me here on kevinMD.com (and now Wall Street Journal). I think that will do more to change their sloppy work than all else. But thanks for your encouragement. This is part of the reason I write BiddyBytes–patient advocacy (but I also point out what’s very right in the medical industry–as you’ll see in many other posts.)

      • gzuckier

        Exactly. I’m sorry, I do not wish this lab to practice on me until they figure out how to get it right.

  • Dave

    Weird, if people are taking tons of drugs to sleep is it really an accurate sleep test? I would think anything you got out of someone drugged up on pills would be pretty worthless.

    After a take home sleep apnea test, I had a second one done to titer my CPAP at a very nice center. I’m kind of surprised it wasn’t more like a hotel room with a private bathroom/etc. Even though I had several sensors on I was able to get myself unhooked/to the bathroom (all the sensors went into one plug/was easy for me to remove/put back in).

  • mc

    Wow, I have never heard such a story. I have been to tons of sleep labs and they are all made up like cozy master bedrooms and have their own bathrooms.Of course all of them have to cover you with wires to record a ton of details about your sleep behavior-even restless leg syndrome, night terrors, oxygen saturation, etc. Never heard of anyone getting a sleep med either-it would mess up the EEG tracings and slow down your breathing. Really, it probably will not be too long before all sleep studies can be done in the home. Insurance probably will not continue to pay the 3 thousand per night visits and even the sleep apnea folks now have auto-titrate that automatically delivers your perfect pressure.

    • Dave

      Yeah, I agree. I maybe could understand sleep meds, if it was assumed you’d continue taking them. But the lady that “took enough to knock out an elephant” seemed like that would result in absolutely worthless data.

  • Finn

    My sleep lab was literally a hotel room, a part of the Holiday Inn across the street from MGH that the hospital leases for its lab. My understanding is that the only clinically useful information they can get from a study is sleep apnea, restless leg syndrome/periodic limb movements, and that REM disorder in which sleeping people act out their dreams. My study showed that I awoke briefly but frequently, then stayed awake for 2 hours, and had only 1 period of REM sleep the entire night. None of that information was of any use in treating my insomnia, and all of it was information that my doctor and I already had.

  • sleepdoc

    Sorry you had such a bad time, Colleen, and at risk of making you feel worse, you probably didn’t need to be in a sleep lab in the first place. I am a sleep specialist and have been in practice for over 30 years. When I first got into sleep medicine, we did sleep studies on every patient, no matter what their problem was. Indeed, if the main complaint was insomnia, we did two consecutive nights of recording, since such patients often slept as poorly as you did on the 1st night. We soon discovered that the studies seldom contributed much to the diagnosis or treatment. In addition, then as now, insurance companies wouldn’t pay for studies for insomnia complaints and this is one of the rare occasions that their denials of coverage are largely justified. The most common causes of chronic insomnia are, roughly in descending order: mood disorders, anxiety disorders, chronic pain, sleep apnea (usually mild), and Restless Legs syndrome (RLS). Almost all chronic insomniacs also have poor sleep hygiene, mostly in the form of spending way too much time in bed and having a too-variable sleep schedule, in particular having very different weekday and weekend arising times. The result of these latter factors is to further fragment sleep and make the problem ever more frustratingly unpredictable. Often, adopting a more rational and meticulously regular sleep schedule improves sleep immensely, even if one or more of the other problems cited above are still present. Furthermore, otherwise ‘successful’ treatment with medication for, say, depression or RLS, is not always accompanied by that much better sleep, exactly because better sleep hygiene has not accompanied the medication.

    The vast majority of sleep studies are to evaluate and/or determine CPAP levels for obstructive sleep apnea, and two or more symptoms/signs raising the suspicion of apnea are usually required for an insurance company to pay for these studies. Basically, snoring accompanied by some other sleep symptom (daytime sleepiness, insomnia) in the contest of obsesity and/or hypertension are sufficient justification for both the study and for reimbursement. Also there needs to be a minimum level of apnea (typically 15 events per hour) to qualify for reimbursement for CPAP.

    Regarding RLS, the diagnosis is based on SYMPTOMS: odd sensations, usually in the legs; an urge to move; relief of the odd sensations during movement. In addition, RLS symptoms typically have a circadian rhythm, largely occurring sometime between about 7PM and 1AM. The insomnia is typically a sleep onset problem because sufferers can not hold still long enough to get to sleep. Even some of my otherwise knowledgeable and board certified sleep specialist colleagues confuse the symptoms of RLS with the presence of periodic limb movements in sleep (PLMS) on a sleep study. PLMS are very non-specific for RLS, i.e. can be present in apnea patients, etc, and are not present in all patients with RLS. Hence, RLS can be readily diagnosed (and treatment started) in the office with a good history, and a sleep study adds almost nothing to the care of the patient. Indeed, the finding of PLMS in the lab sometimes leads to inappropriate treatment (for RLS) in a patient who doesn’t have the condition.

    Colleen, I can’t diagnose your problem here, but you might consider seeing a sleep specialist at an accredited sleep center. You can likely find one in your area by going to http://www.aasmnet.org, the website of the American Academy of Sleep Medicine.

  • http://www.biddybytes.com Colleen Kelly Mellor

    Valuable insights–all–and I am especially interested in “sleepdoc”‘s take on the topic. You see, I have noted that when I have exercised too much (I do fast-walking 3-4 times a week), my legs drive me nuts at night and I have a really hard time sleeping. THAT (RLS) may be at the crux of my problems.. And mc and Finn, you corrorborate why I was so disgusted with my own experience, for yours were wonderful. Mine was woefully different than many I’d heard of that mimicked the coziness of finely-appointed hotel rooms. So, I fault myself for not insisting I see the lay-out ahead of time and find out who might atttendant would be (so unlike me to not even foresee how it could have gone) and I want to point out to others to be the careful consumer I wasn’t. By the way, I did not have this experience in a Deliverance-type region. Quite the contrary–this all happened in a progressive facility in that liberal, avant-garde enclave in Asheville, North Carolina. Thank you all for the advice and your feedback.

  • michelle

    I had a sleep study to rule out sleep apnea in much the same facility. I had to walk down the hall to the bathroom which I found embarrassing. Once I was hooked up, I was not allowed to read, no tv, nothing. I had performance anxiety – I slept about 2 hours out of the whole night, one REM period at the end of the night for a couple of minutes. My apnea count was high during the REM stage, but because it was so short, I didn’t have enough episodes to diagnose sleep apnea; I think I had 12 episodes – most during the REM period.

    • http://www.biddybytes.com Colleen Kelly Mellor

      “Performance anxiety” could very well be what happened to me. THIS is why I wrote this piece, Michelle, to suggest folks check out the physical lay-out BEFORE they do the actual time in Sleep Lab. I wish I had done so, and your experience corroborates that there are two of us (and I’m sure a whole lot more) who experienced these conditions. Going down the hall, holding one’s johnny flaps together, to get to the john, is definitely what I don’t experience at home. Plus–no TV, no reading…God, were we at same facility? Thanks for adding your own disastrous experience…We are not alone!

  • http://www.biddybytes.com Colleen Kelly Mellor

    All ye who have lost heart in this world and the nonresponsiveness to us consumers, take heart. I sent a link to this giant hospital (they oversee this Sleep Lab) explaining my post condemning that awful experience was on kevinMD.com (and Wall Street Journal), gave them link to verify, and lo and behold: I received a letter corroborating that they have found my points “well-taken” and are in process of correcting them, inviting me back to see their progress in 6 months time. I will take them up on this. But the fact that this facility is listening and responding makes me know that in the hands of progressive directors, supervisors, etc., there is real hope in the medical industry. I am most pleased my poor evaluation of their facility was not blown off as some malcontent who just wishes to trash. I am all for change, reflecting patients’ and doctors’ interests in getting the best result for all. Thank you all…Please feel free to visit http://www.biddybytes.com often (following your perusal of kevinMD.com, of course.)

    • sleepdoc

      Glad you got an appropriate response from the “giant hospital” but am unclear what you/they meant by “inviting me back to see their progress in 6 months time.” If they are offering another sleep study (‘on their dime’ or not), I’m pretty doubtful if that is what you need (see my initial post again). Unfortunately, hospitals, especially “giant” ones regard their sleep labs primarily as profit centers and only secondarily as patient care centers. As the Chief of Medicine often said when reviewing a case: “What this patient needs is a DOC TOR.”

      • http://www.biddybytes.com Colleen Kelly Mellor

        No, Sleepdoc, I didn’t mean I’d venture there again (to be evaluated), as I don’t plan on “Fool me once, shame on you, fool me twice, shame on me”…No, in fact, I am more into checking into RLS as culprit. No, they just took the time to write, enumerate how they were changing things and invited me to see when it’s all up and running (so maybe I’d write again about the modifications). This dialogue does give me hope however that some within this heaving bureaucracy do care, if only for the fact the “pen is (often) mightier than the sword.” Thanks for concern.

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