Sleep Starved: A site by insomniacs and for insomniacs who are looking for something new…
Mar
5

Sleep Clinics

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I don’t know how many insomniacs feel as I do about their experiences with clinics, but I come across quite a few people who say they’d hoped to learn more about their problem but they hadn’t got anything by way of advice or medication that they couldn’t have got elsewhere, for a lot less money.

What I wanted was the research, to learn about my hormone levels. They don’t even look at hormones. There was a lot of borderline psychobabble and new age talk, make yourself comfortable, turn the lights off. I got told about sleep hygiene, told to get more exercise.

They gave me a pamphlet on sleep hygiene. You can read about sleep hygiene anywhere.

If you don’t have apnea, forget it. They have nothing for you. That didn’t stop them from taking my money. I was using my own money, and it cost quite a lot.

My doc said he’d refer me to a clinic if I wanted, but he said nobody he’d ever referred had got much out of them.

Were you helped by your experience with a sleep clinic?

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20 Responses to “Sleep Clinics”

  1. chaser

    I had a sleep study that was covered by insurance, but similar results. Basically the reaction was, “Wow, you hardly slept!” I was told to lose weight and consider a c-pap (I did not have sleep apnea by standard criteria because it only occurred when I was in REM sleep, and that occurred so infrequently that the awakenings didn’t add up). It was not helpful.

  2. marginal1

    I resent the advice commonly given out for insomniacs “get a sleep study”. It’s not that it’s a bad idea, but I think patients should be INFORMED that its basic purpose is to diagnose APNEA and if you are a chronic insomniac it will probably not be useful. Let the patient decide AFTER that clarification, especially if he/she has to pay for it!

    I’ve had two sleep studies in labs and despite feeling conscious all night, was told that I was getting “enough” sleep; never mind that there was no deeper sleep stages apparent on the graph.

  3. ashleyjg

    My doctor has never encouraged me to go to a sleep study, even though I’ve suffered with insomnia for several years now. She told me they are expensive, that my insurance probably would not cover the cost, and that it’s mostly for older people who suffer from sleep apnea. I kind of resented my doctor for stopping me from going, but now that I have read this, I’m not so sure it would have helped me anyway. You are right, we can read pamphlets anytime, anywhere.

  4. Jim Diamond

    I’ve been to two sleep clinics and it was only when I read *Insomniac* that I found corroboration for the frustrations I have had with them. The first one I went to discovered that I have moderate to severe obstructive sleep apnea and a bit of central sleep apnea. It took me a whole year to adjust to the CPAP machine they prescribed (with no help from them.) The machine does helps but does not solve my problem because I also have the primary insomnia that Gayle has. When I went back to the clinic to tell them that the CPAP was only partially useful, all they did was tell me to keep at it and to practice sleep hygiene, which I alwayx did. I then went to a 2nd clinic at an illustrious university med school and they recommended sleep restriction. This “cure” turned out to be even worse than the condition it purported to treat.

    In both cases there was no attempt by the clinics to proactively follow up with me or to call and ask me to make a follow-up appointment.

    I think that sleep clinics are at best a tool for diagnosing apnea, as Gayle shows, and at worst a racket. Anyone who goes to one should go with very low expectations.

  5. cecilia

    If you think you might have sleep apnea it is good to get a sleep study. If you don’t have apnea, it is a total waste of time and money. They will just give you the same drugs they could give you without a sleep study. I went to a sleep clinic and talked to the doctor there, and he spent 1 1/2hours talking about the psychological aspects of insomnia, all of which I knew. It was a waste of time and money. I don’t think he knew a thing about insomnia, in fact, I don’t any of the doctors know a think about insomnia. They are all fishing in the dark.

  6. lize

    Sleep clinics are next to useless for insomniacs. I had one doctor in Toronto who wanted me to come every year, I suspect to keep bodies moving through his clinic. They gave me no help at all.

  7. lhowe

    I did a sleep study too. I was absolutely exhausted when I went in, yet I knew I wouldn’t sleep without a pill. I asked the technician if I should take it and he said, “well, we’re supposed to be studying how you sleep, not how you lie awake.” so I took the pill and slept 4 hours. These studies of course occur at the worst possible hours for a true insomniac. Nobody ever said they were just diagnosing apnea, but that was OBVIOUSLY what was going on. In fact, before we went into the clinic, we were all subjected to an adfomercial on apnea machines. I was told I have mild apnea, but not enough to warrant a machine. I was told I kicked during sleep, but not enough to warrant treatment. According to my partner, I hardly move at all when I’m really sleeping.

    I was treated like an insane person when I went for my followup with the doctor, who apparently hadn’t been informed of the appointment and was 45 minutes late. I was so tired and so desperately wanted answers. But he only referred me to a behavioral therapist, which I’d already tried. I guaranteed that if I tried this one behavioralist, I would be cured. It is so insulting, so demeaning. How can a sleep specialist not take insomnia more seriously? How can he not be curious about our experience?

  8. lhowe

    I forgot to mention that I gave up my summer vacation (and my kids’) to pay for this ridiculous “study.” The doctor had absolutely no compassion for that fact, nor for the insomnia itself.

  9. HeatherM

    I have resigned myself to the fact that sleep “specialist” or sleep “doctor” really means sleep “apnea” specialist. My experiences mirror most of the ones outlined in previous replies.

    My first clue that this sleep study was bogus occurred when the doctor told me to take my normal dose of Ambien (4 pills…yep…4 of ’em!) and to sleep. I wanted to know why he wasn’t conducting the study sans pills to figure out WHY I can’t sleep without pills (specifically, Ambien). He just said that this was how they do their studies, so I did what he said.

    About a month later, I go to my appointment, very eager and excited to FINALLY get some help. He pulls out this graph of my “alpha brain waves” (or some kind of crap related to that) and quickly says, “Oh, good…you don’t have sleep apnea…” No DUH, EINSTEIN!!! I don’t f****** sleep without pills!

    So, to wrap up: these “clinics” are for apnea, not scary insomnia like ours…
    *sigh*

  10. samoffat

    Subject: book!!

    Havn’t yet read it, will, great interview on NPR – misery loves
    company so I am delighted, not at your insomnia (nor mine) , but
    that you are exposing our sad condition. Maybe some real attention
    will come our way now, from the medical, scientific community.
    Yet another story for you: years (10?) ago, insomnia sent me to
    the Dartmouth Med Ctr Sleep unit, supposedly one of the best. So I
    had high hopes. I was sent a 1/2″ bunch of stuff to fill out, which I
    faithfully did, explaining everything about my sleep, or lack of,
    status – at great length, as requested. Then eventually went to an
    appointment with a….phd? not an md. He nodded seriously and
    listened for an hour, paid no attention to my report, suggested
    another appt, and told me to stop on the way out and go to the
    library for a video. AHA, I thought, at last a cure will be revealed
    to me! It was the stupidest Dick&Jane type movie with nothing that
    I hadn’t known years before. Either they had no idea what to say to
    me or wanted me to be sucked into the mill of endless
    appointments…..I drifted away since there seemed no understanding
    or interest.
    That story is no doubt nothing new to you. It was depressing for me.
    But, one learns to live with reality. Low dose ambien helps me. Hope
    I live long enough (DOB 1928) to be in on a genetic or hormonal or
    whatever cure for this evil & insidious condition – at least I have
    the comfort of learning from you that I am far from alone.
    Thank you -(BTW – I agree that the sleep specialists really way prefer patients with sleep apnea, not us primary insomniacs because there seems to be so far no answer – and docs can do something about sleep apea – which makes them happy, so they avoid thinking about us. I wonder how many sleep mds bother to read this site to get it from out POV).
    Alexandra Moffat

  11. falasta

    EXACTLY! Oh my, I am so glad to have finally have someone come out and say this! I am incredibly lucky enough to be able to sleep a full restful amount with the help of a permanent dosage of Trazadone at bedtime. The problem is that of course I simply cannot fall asleep without it. I’ll doze and doze and doze but never actually sleep without the medication. My doctor suggested a sleep study (of course taking place at night when I wasn’t even tired), and the very first thing they had me do was take my normal sleeping medication.

    *headdesk*

    And then I sat with a bunch of older people and watched a video about sleep apnea, as if that were the only sleeping problem anyone could ever had. It was miserable night-I felt like I hardly slept at all (can anyone sleep with all those wires). I was freezing and miserable, but the Trazadone did put me to sleep after a few hours.

    The results of the study? A copied page about Sleep hygiene and the mention that I had some “mild snoring” and should see a special dentist to get fitted with some expensive contraption. Total waste of time. Isn’t the point supposed to be why I’m NOT SLEEPING?

  12. onceslept

    so I says, I says,- what the hell do I have an endochronologist (hashimotos), a pain managment neurologist, a fibromyalgia neurologist, and a sleep neurologist (I’m on a cpap machine along w/ clonazapam and lunesta)for? oh wait, I also have a gyn that says-well your menopausal your never going to loose weight. I went to 1 internest and told her I’d like to get all these Dr. in one room and tell me what the hell is wrong w/ me and fix it w/out massive drugs. She said,”maybe you should see a psychologist to used to the way your body is now”. So now I’m on internest #2 he gives me serquel and runs the test I asked fo for RA. The more I excersise the more pain I’m in (so I can’t gain muscle mass to help my degenerating back) even less than 4 hrs. of sleep (w/ drugs). When this started I used to call my lack of sleeping analagous to “surface sleeping”-you kind of know your awake- you never get any deep sleep. I really was at the end of the line. And I’m soooooooooo “tired” of antidepressents-OMG what do they think uhh yeah I’m not really happy that I CAN’T SLEEP!

  13. There are at-home sleep apnea tests which are a lot less expensive than the overnight sleep studies at clinics. And last I checked, Medicare may pay for them. Just a thought if you think you may have sleep apnea but don’t want to undergo polysomnography.

  14. borntired

    i have had 3 overnights and 2 mslt’s, and am working on a 3rd set at henry ford, hopefully.
    this is my opinion and experience, but if you do not have apnea, “patient beware”…these tests and docs will only take your money or your insurance money, and not do any good. why…because the meds to treat everything else, if these tests are “honest”…are controlled substances, and docs do not like to write scripts for controlled substances so many docs will skew test results and have actually lied to me, saying my 72% sleep efficiency “is not thaaat bad” so they “convince” you not to want scripts for controlled substances and will not ask for such scripts. i did one google search on sleep efficiency and find that anything under 80% is considered CHRONIC INSOMNIA ! sorry, i am screaming, because i was lied to and still given xyrem to try. i will be asking that if my sleep efficiency is not thaaat bad,then why was i given one of the most controlled medications for sleep and i also do not have cataplexy?
    i have never once in my life woken up after 7,8,9,10,11,12,13,14 hours of sleep and felt refreshed by sleep, i have to have had (including pediatric) insomnia all my life, most likely inherited, because both parents and all 3 siblings have not and do not sleep well and have trouble waking up in the morning. i complained to negligent mother that i was tired all the time when i was 12 yrs old, but hesitated for years to tell her because she was tired and crabby and negligent all the time.
    i also,per sleep diary/log, have d.s.p.s. this same sleep/neuro doc lies drawing me graph of resychronized sleep log, i tell him i have tried everything to resynchronize,some of us cannot be resynchronized, he did agree i have circadian rhythm disorder…some docs are UNBELIEVEABLE !

    so if you find an excellent doc using a good lab to do testing, and the doc wants to find the real cause and wants to treat the real underlying issue, then the tests would be wortg doing, if not, don’t bother unless you need the skewed test results for disability documentation. it is truely sad how behind the medical community is, it is sad how concerned with only money many in the medical community continue to be at the cost of not helping and improving the health of the patient, it is all truely sad and disappointing, to say the very least.
    take care.

  15. My sleep clinic results? I’m sleep-deprived. That’s all I got out of it. I refused to take the useless and insulting Sleep Hygiene handout from the doctor. Ugh.

  16. Dan Eaves

    The posting by Kir dated September 22, 2009 in the Sleep Clinics section is a bad virus.

    dan

  17. Sleep Apnea is really annoying and sometimes it is an indication of another disease in the body.`-~

  18. Gayle, We are doing something different. We have been testing a sleep device to help deep sleep for the last two years. See http://www.zeez.org.uk . Here’s a recent clip – more on website . Please contact me if you would like to talk.

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