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Sleep studies

shhhhshhhh Registered User regular
Hi all. I've been a chronic insomniac for a decade, and frankly, it's killing me slowly. I have done two sleep studies in Saint Louis. One was with a highly reputable institution, Washington University. That study was about five years ago. The results they gave me essentially did nothing for me. They told me that it took a long time for me to fall asleep but that once I did I cycled through sleep properly. However, it was a normal night (for me) of nonrestorative sleep where I felt like I didn't sleep at all, and my eyes hurt terribly. I now have an appointment with the Mayo Clinic in Rochester, MN, but am considering cancelling it because upon talking with them I found out that it is simply a one night sleep study, with a next day consultation. I feel that this is completely inadequate in assessing what is causing my sleep disorder.

My question to the forum is: does anybody know of an institution that does a more comprehensive type of sleep study? I want to stay somewhere for a week, for example; basically stay long enough to get enough attention and observation to where I get an answer I am satisfied with. Every sleep study I look up online is the same deal: one night of observation, and a follow-up with a psychiatrist. It baffles me that this is the established way of studying sleep disorders. Certainly some people may get some satisfactory results out of a one-night study, but certainly some people don't. If anybody has information or experience with an institution that works more thoroughly, that information would be HIGHLY appreciated.

Thanks all.

Posts

  • k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    edited September 2014
    As someone who is a long-term SEVERE insomniac --- I feel you. Most people do not understand what it's like.

    IANAD, but the thing with sleep studies is that they typically look for very specific sleep disorders (in my experience) such as RLS, sleep apnea, teeth gnashing, etc. and less about general sleep initiation and quality. Sleep apnea is really tricky because there's absolutely no reliable way to self-diagnose. But, if you had sleep studies before and it hasn't shown up, then I'm guessing it's not the primary issue. If you're having chronic sleep problems there is usually an underlying medical/psychiatric problem causing it. As someone who struggled a long time with the medical world, I can tell you that if all your general medical results are normal, your best bet on getting better sleep is probably the psychiatric route. For years I struggled with (no pun intended) insanely poor sleep, and it turned out that I responded fairly well to the BP II treatment modality. Am I bipolar, IDFK. Are the meds significantly improving my sleep and my life in every way, absolutely. Something to consider.

    k-maps on
  • shhhhshhhh Registered User regular
    k-maps... Unfortunately, I have been going the psychiatric route for eight or nine years and nothing has worked. My first psychiatrist (whom I consider to be a fraud) diagnosed me with bipolar (not sure if he named a type), and after five years of trying medications to stabilize my mood, he started calling it a "variant" of bipolar disorder. I finally ditched him and was referred to a good psychiatrist, who didn't give me an exact diagnosis, but with what I imparted to him, agreed that I may suffer from something similar to PTSD, if not a type of that disorder specifically. We tried what you try with PTSD: antipsychotics and antidepressants (which disproved the bipolar theory since I never once had anything remotely resembling a manic episode). The only class of medication that has gotten me sleep over the past ten years (aside from a couple successful stints with antidepressants that lasted a couple weeks [my guess is placebo effect]) has been benzodiazepines, which don't work on a sustainable level because of the issue of tolerance. This pretty much leads me to think that overwhelming stress and anxiety are the culprits.

    I actually just listened to a voicemail from my psychiatrist, and he said he would go through with the Mayo Clinic if not just for the assessment process, and also suggested that they may have better machines to monitor brain functioning and such than any place in Saint Louis. So I may take the trip up there just to see. All that said, I am pretty much convinced at this point that medicine may not be an answer for me, and I just joined a yoga class which is to begin Saturday. I am confident that if I learn hatha yoga properly (the teacher is excellent), and practice it with diligence, it may very well be my answer to the scepter of insomnia.

    Thanks for the response, k-maps. If you are interested I can update this thread in the future with results. If anyone else has experience with a different type of sleep study, I am still looking for such information.

  • k-mapsk-maps I wish I could find the Karnaugh map for love. 2^<3Registered User regular
    Really sorry to hear that. My experience has been trying everything I can to resist the meds, and then burning out on lifestyle changes (diet, meditation, exercise, etc.) but never really getting anywhere. I think I have a similar psychiatric profile to yours (got labeled as BP, but don't actually believe it), have genuine war-related (not from U.S.) PTSD from childhood that I think is underdiagnosed in my cohort. I've been told by psychologist/psychiatrist that my main issue is "high vigilance" which is very typical of PTSD. Benzos work TOO well for me, but as you said, are not tolerated long-term. I really think yoga/meditation is a great idea for managing stress/anxiety, but haven't had the wherewithal to really go through with it. Please let me know how this turns out for you, and feel free to PM me if you want to chat about your issues and techniques that may help.

  • JohnnyCacheJohnnyCache Starting Defense Place at the tableRegistered User regular
    vipassana meditation pairs well with yoga. there are secular/non-Buddhist curricula for it.

    Have you seen an ENT MD? Specifically, an ENT specialist, not a GP, who could diagnose problems other than gross sleep apnea? If you're low in co-morbidity (like you're very thin) you could have a subtle issue with the apnea reflex that's not manifesting as the traditional snoring and waking....

    Do you remember your dreams often and are they frequently trauma-processing or nightmares?

  • shhhhshhhh Registered User regular
    Johnny, first of all, I will have to explore modalities of meditation, but the primary course of action for me is just to learn hatha yoga well. The entire intention behind it is to prepare the mind and body for meditation. But I will look at Vipassana; thanks for the suggestion. I actually just recently saw an ENT, as I am pretty sure I have recently developed TMJ. I am not thin, though have been exercising (running, lifting), and have been losing weight. I am 5'11" and weigh 200 lbs. Still overweight but with consistent exercise and healthy diet, I should be able to get back down to where I was a few years ago (180ish). Both of the sleep studies I have been involved with were 5+ years ago and I was of healthy weight. Neither study found me to have sleep apnea, even the study in which I had a normal night of non restorative sleep. The other study I drugged myself to "real" sleep, so it was essentially pointless.

    The most important question you asked by a long shot is about my dreams. I'd say that about 25 nights a year, no exaggeration, I have dreams that aren't traumatic in nature. Adult nightmares. The worst and most uncomfortable social settings and circumstances pervade my dreams, when I do remember them. I had a very naive, confused, and uninformed and underdeveloped social life for most of my life, and still struggle with it. It mostly stemmed from growing up in a dysfunctional family and the private religious schooling milieu I was forced to endure from the ages of five through 18. I am 99% confident that the troubled past, in tandem with several extremely traumatic experiences (for example I was stabbed with a screwdriver when I was 15 months old, as was my mother and her father), keep my dreams from being peaceful, explorative, fun, interesting, you name it. I do think that proper yoga practice, once I understand it, could very likely bring my body, mind, and heart to a peaceful space, and I'm just going to keep pushing with it until I know for sure.

    I have decided to go to the Mayo Clinic, just because I was approved and have good health insurance. That happens in a few weeks. I will update this thread with results from that.

  • shhhhshhhh Registered User regular
    Just to update, it's not like I'd done a lot of my own research on types of sleep disorders before. But perusing the internet led me to an interesting concept, which is this: http://www.swjpcc.com/storage/manuscripts/volume-8/issue-6-june-2014/075-14/075-14.pdf . Pretty sure that's what I'm dealing with. Asleep and awake simultaneously.

  • shhhhshhhh Registered User regular
    edited September 2014
    Silly internet, double post.

    shhhh on
  • PriestPriest Registered User regular
    shhhh wrote: »
    k-maps... Unfortunately, I have... snip

    Hey, I just wanted to flag a couple of misconceptions here. Not to diminish what you're experiencing, more just so that misinformation doesn't keep going around.
    shhhh wrote: »
    he started calling it a "variant" of bipolar disorder. snip We tried what you try with PTSD: antipsychotics and antidepressants (which disproved the bipolar theory since I never once had anything remotely resembling a manic episode).

    Differing types of BiPolar disorder is an emerging diagnosis that is incredibly critical to proper care. In the effort for a hard-and-fast diagnosis, doctors have often labeled individuals as 'Manic,' 'Depressive,' or 'Bipolar.' The truth is that manic and depressive exist on a spectrum. Likewise, frequency of episodes exist on a spectrum. Depending on the chemical balance in an individuals' body, they can be at varying levels in this spectrum.

    As a result, there are broadening diagnoses known as Bipolar Type II and Bipolar NOS (Not Otherwise Specified). The key here is Bipolar symptoms as opposed to Major Depression symptoms, with the chief identifier between them being frequency of episodes.

    Dr. Jim Phelps, who's done a majority of the pioneering of this field: http://www.psycheducation.org/

    There are tens of thousands of bipolar individuals who never experience a manic episode, because, for them, they waver between 'normal functioning' and 'depression.' Likewise, there are tens of thousands of bipolars who never experience a depressive event, because they fluctuate between 'mania' and 'normal functioning.' It's all on a spectrum.

    Again, this is nothing against you, but I just want to help dispel the misconceptions that color psychiatric treatment, so that we can benefit the greatest number of people in the best manner possible.

    To that end - I hope you get the assistance you need and deserve, and wish you the best of luck!

  • azith28azith28 Registered User regular
    I was actually about to post a sleep question, ill just throw it in this thread.

    The last week or so I've had an odd issue. I think I'm sleeping much deeper then i usually do. Let me lay down the evidence.

    Up until last week I've been awoken at 5am pretty damn regularly by my cat for breakfast. I get up, feed the cat and go back to bed for 2 hours until my alarm goes off. Anyway, for 2 days in a row, i wake up at 7am without being awoken by the cat, which i found odd, but figured...hey...shes a cat...maybe she realized she was getting predictable or something..

    The next morning however, i awoke with a very vauge memory of my cat trying to get me out of bed and failing.

    The next morning i went to bed normal time, woke up normal time and i was DEAD tired. it took me a good 3 hours at work and 3 cups of coffee to feel awake.

    The next morning was saturday. I slept until noon (10-11 hours sleep) and i do not recall turning off my alarm clock that goes off each morning at 7am weekend or weekday.

    Sunday morning I slept about 9 hours...a bit more then usual but more or less felt okay when i woke up.

    Today i woke up at about 5 because it was hairball-o-clock...it got me up, i fed the cat, cleaned the hairball and went back to bed...i felt kinda rested at this time but managed to get back to sleep, woke at 7am and felt very tired again.

    Most people complain about not enough sleep but it feels like im sleeping more and deeper then usual...cant think of why.

    Stercus, Stercus, Stercus, Morituri Sum
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