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Does going to a sleep study REALLY help anyone?

Discussion in 'Sleep' started by redrachel76, Jan 19, 2014.

  1. redrachel76

    redrachel76 Senior Member

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    I keep toying with the idea of seeing a sleep specialist and going to a sleep clinic. I can't make my mind up.

    I would like to know if going to a sleep clinic has actually helped anyone or do they just measure sleep apnea?

    I went to a sleep clinic 13 years ago.
    They expected you to sleep from 8p.m till 6 a,m in the morning. I have delayed circadium rythm so I only fell asleep at 4a.m.
    They told me it was not enough time, diagnosed delayed circadium rythm. They then told me to take melatonin and come again. I did not return because melatonin does not help and the sleep clinic doctor was terrible.

    I am thinking of trying again with another clinic, but have been told that all sleep clinics only check for sleep apnoe. Is that true??
    Has a sleep clinic actually helped anyone?
  2. South

    South Senior Member

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    It was a total waste of time for my husband. They have no useful suggestions whatsoever.
    Incidentally, melatonin only helps those who are low in melatonin - sounds silly to say it like that, but melatonin gets so much press in magazines and books, and yet there are so many other things that affect sleep that the public doesn't know about.

    Have you done any reading on adrenal health? Sorry if that's old news, but thought I'd mention it in case you hadn't looked much into that.
  3. Soundthealarm21

    Soundthealarm21 Senior Member

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    I had a sleep study done. They had zero suggestions for 21 arousals between 1030pm and 6am. They simply said you don't have a serious problem with sleep apnea. I'm pretty sure waking up 21 times is a bit much. I was not presently aware of 21 times, but I remembered waking up 6 times. So obviously there's something going on there, but nothing they could help me with.

    I honestly just take a lot of stuff to make me sleep through the night.

    Klonopin, Clonidine, Trazodone, GABA, L-Theanine, Melatonin sublingual

    It's a handful, but personally i'd much rather take drugs and sleep than suffer through sleep deprivation.
    heapsreal likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    Maybe they could have some other sleep ideas seeing the melatonin didnt help. That certainly wasnt enough for me (I had to take other things on top of the melatonin and cycle various drugs) but on the other hand its something your doctor should be helping you with seeing you alreading have a diagnoses of circadian rhythm issue so shouldnt need sleep clinic for.
  5. redrachel76

    redrachel76 Senior Member

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    I am going to do the salivary cortisol test.

    I have a definite delayed circadium rythm problem. Don't know if the depth is good or bad. Though I feel shattered when I get up and better as the day wears on.

    I read on this forum that you have to ask them to test delta stage sleep otherwise they won't do it.
    Just wondering if there are any other tips like that for PWCFS in sleep clinics.

    Somewhere else here it said that a huge percentage of of ppl with CFS have an undiagnosed sleep disorder and a proper sleep study is a must.
    Don't know if that is true.

    Are people in clinics and sleep specialists capable of diagnosing things beyond sleep apnea and circadium rhythm?

    Or is the majority like here - finding a solution on their own with google and sometimes the odd good sleep doctor seeing them?
    Last edited: Jan 20, 2014
  6. Sing

    Sing Senior Member

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    For a sleep study, do you take all your usual meds and supplements?
  7. madietodd

    madietodd Senior Member

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    Dr. Rey wanted me to have the study done at a Neurological sleep center. The results are reviewed by a neurologist, who can prescribe heavy-duty sleep meds (in the US) that regular doctors aren't allowed to mess with. Presumably, a neurologist would also understand a lot more about the results than the centers that just want to sell cpap machines.

    I had a regular study done because there's no neurological center close to me. It was a waste of time. The results showed no apnea, but they tried to sell me a machine anyway. Because "It's fully covered by insurance!" and "you never know - it helped my mother!" This "doctor" had a PhD in sleep disorders (??!!?).
    Little Bluestem and SOC like this.
  8. Sing

    Sing Senior Member

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    Dr. Alan Pocinki in D.C., with many patients who have ME/CFS, also Ehrlos-Danos Syndrome (spelling, sorry) gave a terrific talk on our sleep, also on what sleep centers miss or don't regard as significant (from the point of view of apnea), such as multiple awakenings and little Delta sleep, and he linked it with autonomic problems and alterations in heart rhythm, if memory serves me (ha, ha). He spoke about how he addresses sleep and how it is the first and most important thing to treat well--whatever it takes--as our entire health and well being rely upon it. This talk is well worth watching! It is on vimeo and is number 35766364. If I try to write it out as a link, vimeo won't let me do it here. But if you just put vimeo and that number above, you could go directly to the talk, I think.

    Llewellyn King also had an interview with him posted around on October 22, 2013--Episode 51 but he doesn't go into nearly the detail about the sleep problems he sees.
    Last edited: Jan 20, 2014
    WillowJ, SOC and Soundthealarm21 like this.
  9. vamah

    vamah Senior Member

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    I was offered the oportunity to do a sleep study back when I was with my miserable hmo, but I didn't do it. Even before I had my current sleep problems, I have never been able to sleep well in a strange place, so I couldn't imagine being able to sleep there at all. And I knew I didn't have sleep apnea which is all they look for. So seemed like a huge waste of time.
  10. SickOfSickness

    SickOfSickness Senior Member

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    I think it's waste unless you think you can fall asleep during the study (with all the changes, and things taped to you, at the times they observe) and think you can tolerate the mask and pay for the CPAP, if you get diagnosed with apnea. A lot of people can't sleep during the study or the return visit to get fitted for a mask, meaning more visits. Also most people don't use their CPAP after paying for one.

    Or the other reason to get a study is if you may have RLS.
  11. barbc56

    barbc56 Senior Member

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    I can't post right now, but yes, it was very helpful, but with some caveats tha are important. I will post tomorrow but in the meantime I wanted to at least let you know this. Hang in there!!
  12. soxfan

    soxfan Senior Member

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    I had 2 study's done 3 years apart. I only slept two hours total the first time and two and a half hours the second time. They let me take my meds but I still was unable to sleep. They checked for RLS and sleep apnea which I had neither. They had no suggestions for my poor quality sleep and unrefreshing sleep.

    They did tell me that people take way too much melatonin and that you only really need 1mg or less...and that is only if your body is deficient in it . You can be tested as it is a hormone.
  13. PennyIA

    PennyIA Senior Member

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    I

    I basically think that they do primarily check for sleep apnea and/or perhaps narcolepsy - other common sleeping disorders.

    FWIW - my two brothers and my sister both got diagnosed with sleep apnea and all have found that they feel more rested after starting CPAP therapies.

    For me? I don't have that and according to the study results I have the best sleep patterns they have ever seen in any of their other patients. So, in other wods - at least it's proof to the doctors that the complaint of getting a good nights sleep followed by sheer exhaustion when it's time to get out of bed at least is proven that there's nothing medical keeping me from sleeping well. But waking up beyond exhausting is still one of my least favorite symptoms... it's very disabling.
    soxfan likes this.
  14. Soundthealarm21

    Soundthealarm21 Senior Member

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    My psychiatrist wanted me taking 1/3 to 1/2 mg, but I need it at 1mg to work and sometimes 2, but I try not to overdo it.
    soxfan likes this.
  15. Sing

    Sing Senior Member

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    Melatonin in any amount immediately makes me depressed. I use Tryptophan in addition to sleep and pain meds--non-narcotic and no Z drugs. Z drugs can cause a dangerous morning amnesia for me. What I eat and drink in the evening matters a lot for quality of sleep and whether it is well sustained.
  16. Firestormm

    Firestormm Guest

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    I went and had the study - after many years of the symptoms being put down to ME's sleep dysfunction - in August 2013. The neurologist and neurophysiologist interpreted the results as chronic obstructive sleep apnea.

    I then after Xmas saw the sleep specialist at my more local hospital. I think he was being territorial but he also agreed with the diagnosis, saying something like: 'The trouble with patients who have trouble maintaining or with generally disturbed sleep is that we often don't have enough evidence of your sleep recorded.' So I did a further home monitor test - again overnight.

    Kind of hilarious really, as I remember at some point having an incident falling out of bed and coming round on the floor with the monitor askew around me. But together the two were enough to begin treatment with a sleep mask worn during the night that delivers I think air or oxygen.

    I'm actually going for a fitting next week. The specialist did say, that it's a bit of a lottery with this treatment. Basically, if it helps, it helps, if it doesn't then it's perhaps not the Apnea that is causing the most problems. Or something like that.

    But really I only wanted to try and see if delivery of oxygen at night helps a) improve my sleep, b) might alleviate cognitive and physical fatigue issues during the day.

    We shall see... It was though interesting to go through the hospital results with the neurophysiologist. It was clear to see that oxygen was not getting to the brain in sufficient quantity, and for notable periods. At which point my brain would wake me up to breathe - thus interupting any 'cycle' I might be experiencing.

    It is a working theory of mine that this enforced waking, and interruption, may be what is causing the complications. But the proof will be when the treatment begins - for me at least.

    Got to be worth a shot.
  17. redrachel76

    redrachel76 Senior Member

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    Someone here in Israel told me that you can have a basic sleep test at home. It consists of a little devise you wear on your wrist called Watch PAT 200 and (I am not sure if there is more equiptment).
    It tells you much less than a conventional sleep lab but you have the advantage of getting to sleep in your home. Maybe it's not for CFS patients.

    I have booked an appointment with a sleep specialist on Wednesday.
    I will try to watch that vimeo video before the appointment. Thanks for telling me about it @Sing
  18. Sing

    Sing Senior Member

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    I think the vimeo video could be helpful to you as it points as abnormalities which the sleep specialists often ignore, the autonomic irregularities associated with all the mini-arousals and awakenings, which are not apnea.
  19. redrachel76

    redrachel76 Senior Member

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    Well I saw the sleep doctor. I was disappointed with him not answering my questions. To everything I asked his answer was "I am not going to say anything till you have done a sleep study". He said there is also a bracelet thing that you wear for 2 weeks to track sleep.

    I asked whether sleep studies check more than sleep apnoe, he sort of answered yes.
    I then got out this paper with a list of drugs that enhance stage 4 sleep. I asked him if any of them are in use now.:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824211/
    He said no.
    He said that the Seroxat I am taking reduces stage 4 sleep and so does Clonex, which I recently weened off. I was surprised over this. I asked if there were any antidepressents that don't reduce stage 4 sleep and he said that he "doesn't want to get involved in psychiatric care". Never mind that ME and FMS and delayed circadium rythm aren't psycological. Then he shooed me out of the room.:rolleyes:

    At least I got a referell for a free sleep study out of him. Nearly every doctor I get involved with gives the same attitude over pscycology when they see "CFS", FMS and "Seroxat" on my notes. It's very frustrating.
  20. Soundthealarm21

    Soundthealarm21 Senior Member

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    I can tell you for a fact that trazodone is still in use. I take 100mg every night.

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