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Sleep Starved: A site by insomniacs and for insomniacs who are looking for something new…
Nov
4

You see, we’re not crazy after all

“Study links primary insomnia to a neurochemical abnormality in young and middle-aged adults. The study is the first to show a specific neurochemical difference in the brains of adults with primary insomnia.”

At last! I knew it, I said it in INSOMNIAC: insomnia is not (necessarily) about psychopathology, it’s about neurophysiology I always knew there was some neurobiological/neurochemical difference between me and people whose sleep comes down like a black-out curtain, sweeps them under like a wave. Here’s what I wrote:

“What if, in the not too distant future, people are saying, ‘we used to think insomnia was [about habits, attitudes, psychopathology]… but we now know there’s too little of a crucial neurotransmitter, some substance that’s not being produced… some glitch in the brain’s extraordinary circuitry that leaves insomniacs without the neurological wherewithal to transition to or maintain normal sleep’?”

I knew the research would bear this out. I didn’t know how soon.

John Winkelman, lead researcher, says this “may increase the legitimacy of those who have insomnia.” Yes, it will! Very exciting research! Go, Winkelman!

Check out these links:

http://www.eurekalert.org/pub_releases/2008-11/aaos-slp102408.php
http://www.bio-medicine.org/medicine-news-1/Study-links-primary-insomnia-to-a-neurochemical-abnormality-in-young-and-middle-aged-adults-28481-2/

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21 Responses to “You see, we’re not crazy after all”

  1. marginal1

    Thank you for bringing attention to this latest research regarding the biochemical abnormalities responsible for some insomniacs’ problems. As a life-long sufferer whose life has been greatly impacted by insomnia’s resulting fatigue, I live for these discoveries.

    I keep my social circle quite small as (at 60 yrs. I’ve tired of trying to explain my “checkered” career and my current disability status. So, when I see a discovery such as this I print it out should I ever feel the need to try to convince someone, and even to console myself (it’s NOT my fault!).

    I’m sure they’re on the right track with the GABA transmitters, but it is not totally satisfying for me and I have to play devil’s advocate a little. Couldn’t it be said that we have the ability to affect our brain chemistry? Don’t they claim that, say, depressed people can actually change their chemistry by regular exercise? I know that for the truly chronic PRIMARY insomniac it doesn’t work that way. I’ve tried everything over the years, and initially with great faith that it would work. I’m just thinking from the point of view of skeptics who still “won’t believe”.

    I also was grateful that they recognize and support the need of benzodiazaprams (sp?) for attaining sleep. Klonopin (or any benzo) is the ONLY thing that has given me any relief over these many years. I went many decades without this help, and I think I might have ended it all if I hadn’t been able to start taking it at age 50. If nothing else, I will keep this article if I ever need a new doctor who balks at prescribing the only help I have.

    Thanks again for your website…and I like the new format.

  2. gayle

    Thank you, Marginal1 (love that name!)–and thanks for playing devil’s advocate -but I dunno about changing our brain chemistry. We live in a can-do culture that tells us everything is within our power to change, and in ways it’s a philsophy that serves us well, very empowering, and all that; I’d rather err in that directin than in the other. But there are limits–as you say in your remark. We all have different biological makeups.
    Yes, exercise and diet and sunshine and all those good things do seem to have some ability to affect our biochemistries for the better. But with major depression? I don’t think anybody makes that claim. With the dopamine-deficiency in Parkinson’s? And with primary chronic insomnia? You and I have both tried everything… The sleep system just doesn’t work.
    I’m just so glad these researchers are on the trail…

  3. Stacich

    It is so good to hear something that I have always believed. (Original post). As someone who has always suffered insomnia and studied cognitive functions, I have tried so man holistic methods that do not work. Right now I am taking medication for sleep, and am learning to accept that in order to function I have to sleep. I will look more at the links. It is heartening that there are people that are looking into more of what causes insomnia. Thank you for the new information. I also like your new format.

  4. bonita63

    I just read a piece in the Globe and Mail and was glad to see it pointed out that there could be a genetic component to insomnia. My mother took sleeping pills. Only one of my four children ever required much sleep from birth. In fact, 3 of them only napped 45 minutes during the day, and that was in two segments! I started out in life rarely needing more than 6 hours of sleep a night. Now at 45, I find myself going for weeks with an average of 3 hours a night. I find this difficult at times, but I don’t take anything for it.

    I’ve been to a sleep lab, where they ascertained that I have an unusual amount of slow wave sleep and almost no REM (which is weird, since I’m a lucid dreamer and have lots of memories of dreams most mornings). However, since I demonstrated an ability to stay alert all day, they didn’t feel a need to assist me in getting more rest. I would just like to wake up more mornings actually feeling rested - a rare feat for me. Once I’m up and about, I am fine and actually very energetic. This seems to be part of the problem. I’m such a go-getter, I never really wind down!

  5. AlistairMcLaughlin

    I, too, just read about this site in the Globe & Mail. As a life-long insomniac (who has managed to avoid sleep meds for the past five years) I’m glad they’re finally taking this issue seriously. It isn’t always “stress” or “depression” or an “inability to relax”. It gets tiresome explaining to people that sometimes I just can’t sleep - for no particular reason. Because anytime I admit to having a crappy sleep, the first question is invariably “Why not?” Sometimes I feel like snapping and yelling back, “IF I KNEW THE ANSWER TO THAT, I’D HAVE CORRECTED THE PROBLEM AND GONE TO SLEEP!!!” Instead I’ve learned to dismiss people’s questions lightheartedly. I often joke and tell people that I suffer from CFS - Can’t F****** Sleep.

  6. emma

    It was so great to find this site, find others out there like me, and be informed of Dr. Winkelman’s study! I’ve been to sooo many doctors, psychologists, psychiatrists, behaviour therapists, sleep labs, all with no help. I’m 29 years old and have had this problem since i was a child. My last psychiatrist insisted that i must have been abused as a child or hiding some deep dark guilty secret to have this level of sleep difficulty. I had the happiest, most loving, normal childhood a person could ever ask for. I am generally a happy, fit, positive (unless sleep-starved) person with a great job, great friends, and a great family. When i told the doctor this he said that as long as i kept lying to him, he could not help me, and refused to see me agin unless i was ready to ‘fess-up’. That was the last doctor i’ll ever go to abpout this problem. They know less than nothing about insomnia, unless it’s transient, related to pain, depression or medication. The only depression I feel follows after about 2 nights of total sleeplessness. I feel those chemical changes very acutely, even though doctors won’t attribute depression to that, but insist it’s the other way around! I don’t think so! So nice to read others who feel that same as i always have, that the type of chronic insomnia we have, that lis not triggered by underlying depression or “poor lifestyle/sleep-hygeine” (gagggg)…could possibly be physical/genetic. It’s just hard to beleive that it’s universally stress-related as i’ve seen many friends/family in extremely traumatic times with poor “sleep hygeine” who sleep like babies. Winkelman’s research is real, open-minded and seeks to come up with answers, not mold findings to fit a pre-conceived notion of sleep problems. Not only could it potentially offer a future of greater understanding for us, or a possible cure, but it may also be the tip of the iceberg towards understanding the nature of many psychiatric disorders, such as post-partum depression…Could it be that lack of sleep could be the cause of the depression, not necessarily anything to do with hormones or their baby? Sleep deprivation has been used as torture for a reason.

  7. annavanderpost

    I believe that sleep problems are more common in women so I feel more needs to be done to see the effect of hormones on sleep. I was never a good sleeper but it wasn’t until I was pregnant with my son 17 years ago that things really began to deteriorate. I now average 2 hours a night and can go for nights with no sleep. I know people don’t believe me but I get up and do things so I know I am not sleeping. I am so tired that everything in life is an effort. I am struggling at work, struggling at home and really just survive. I no longer feel much joy and just go through the motions of life. I am too tired for fun and find myself blubbing at the drop of a hat or moaning relentlessly when I am hyped up (for you have to go into a hyped state when one is this tired, in order to cope with the chores of life). I have embarrassed myself by poor judgements and over reactions, which when I am not tired would never happen. By nature I am considered and sensible. Not this mad middle aged woman I have become. I found myself yelling at a man in the street recently because he was standing staring at me while I tried to parallel park (something I can do very well when I am not tired) and I couldn’t believe how rude and insensitive he was to stare at someone who was so obviously struggling.
    I am fed up with being so tired and no one really believing how little sleep I have or insinuating that it is a character defect ‘try meditating’ or ‘well you are rather a cross and uptight person aren’t you’. No you fool I am uptight and angry at everything because I am tired not tired because I am uptight.

    I would love to do a documentary where I get to keep someone awake (ideally someone who has been less than kind in their response to me), they would only sleep when I do and let’s see just how well they cope! Ha ha (maniacal laughter) See I have become bitter and twisted .I used to be such a nice, sweet and subservient woman, now I hate everyone and resent the fact that no one seems to understand or be particularly sympathetic. Oh and I rant just in case you hadn’t noticed!!

    So glad for this book.

  8. Sandy

    I am only on page 22 of Gayles book and I am so excited I am speechless. In just 22 well written pages she has presented so many clues, so much info that when added up points to the underlying issue. After much research, I have come to realize that the underlying state of the body can act like a low grade infection and, over time, the body breaks down in a variety of ways. Good old Louis Pasteur said it. “I have got it wrong - the germ is nothing. The terrain is everything”. The symptoms she has listed, linked to period, more women and men, the elderly, resistant to medication, feelings of hopelessness, know it is not psychological and yet…….. feel like crap most of the time. The underlying cause of insomnia may be yeast - candida. You may be aware that they are “curing autism” by dealing with all the underlying issues like poor digestion, allergies, aches and pains, stiffness, inability to focus, tremendous need for comfort (self stimulation like rocking) by GETTING RID OF THE YEAST OVERGROWTH. This yeast is sticky and attracts and holds onto other toxins like metals and parasites. Most of you probably feel as if your body and mind have become like a toxic dump and they have. Why women? Candida loves sugar, carbs, wheat, hormones, most medications. Women tend to crave all the things candida loves when they are experiencing shifting levels of hormones. When do we do that? - at puberty, when we take ‘the pill’, pregnancy, post partum, menopause and when do we experience intense insomnia? So after years of inadvertently feeding the candida while trying to get rid of it AND holding onto other toxins. What do you get? An older woman who can’t sleep, has restless legs, aches and pains, a wonky heart, high cholesterol, and way too much medication. The old men are mostly dead. I did this research because my daughter was so sick with migraines, allergies, skin rashes, loss of creativity, couldn’t focus. When I found a way to GET RID OF HER CANDIDA she announced “Mom, I’m back” And then I looked at my life - BINGO! And today the insomnia fell into place. Getting rid of candida can be very diffiicult and I have now had success with several hundred people. My goal is to improve the health and wellness of one million people. I would love to talk to you or post an article or especially talk to Gayle and thank her for the first 22 pages of her book. I can hardly wait to read the rest. If this is your underlying problem you can do a simple questionnaire which will tell you if it is. And your life is waiting.

  9. Sandy

    I am only on page 22 of Gayles book and I am so excited I am speechless. In just 22 well written pages she has presented so many clues, so much info that when added up points to the underlying issue. After much research, I have come to realize that the underlying state of the body can act like a low grade infection and, over time, the body breaks down in a variety of ways. Good old Louis Pasteur said it. “I have got it wrong - the germ is nothing. The terrain is everything”. The symptoms she has listed, linked to period, more women than men, the elderly, resistant to medication, feelings of hopelessness, know it is not psychological and yet…….. feel like crap most of the time. The underlying cause of insomnia may be yeast - candida. You may be aware that they are “curing autism” by dealing with all the underlying issues like poor digestion, allergies, aches and pains, stiffness, inability to focus, tremendous need for comfort (self stimulation like rocking) by GETTING RID OF THE YEAST OVERGROWTH. This yeast is sticky and attracts and holds onto other toxins like metals and parasites. Most of you probably feel as if your body and mind have become like a toxic dump and they have. Why women? Candida loves sugar, carbs, wheat, hormones, most medications. Women tend to crave all the things candida loves when they are experiencing shifting levels of hormones. When do we do that? - at puberty, when we take ‘the pill’, pregnancy, post partum, menopause and when do we experience intense insomnia? So after years of inadvertently feeding the candida while trying to get rid of it AND holding onto other toxins. What do you get? An older woman who can’t sleep, has restless legs, aches and pains, a wonky heart, high cholesterol, and way too much medication. The old men are mostly dead. I did this research because my daughter was so sick with migraines, allergies, skin rashes, loss of creativity, couldn’t focus. When I found a way to GET RID OF HER CANDIDA she announced “Mom, I’m back” And then I looked at my life - BINGO! And today the insomnia fell into place. Getting rid of candida can be very diffiicult and I have now had success with several hundred people. My goal is to improve the health and wellness of one million people. I would love to talk to you or post an article or especially talk to Gayle and thank her for the first 22 pages of her book. I can hardly wait to read the rest. If this is your underlying problem you can do a simple questionnaire which will tell you if it is. And your life is waiting.

  10. My name is Tony and I’m no expert by any means, but I use a product that really helped me after 15 years of insomnia. It’s all natural and inexpensive. This websitehttp://www.tunguskamist.com/4464750 advertises several products; I have no idea how effective the other product’s are but the one they call PM has really been a Godsend to me.

  11. Insomnia can be caused by overeating too close to bedtime. Large meals should be avoided for 4 to 6 hours before bed.

  12. TJSleepseeker

    Hi Gayle -thanks so much for your book, web site and thoughts that greatly help us insomniacs not feel so alone in our struggles for sleep.

    The article that you posted on “see we are not crazy after all” was indeed a breath of a fresh approach to tired old theories that leave many of us feeling that insomnia is something that we ourselves are in some way triggering.

    Of course I immediately googled GABA searching for an easy answer as to how I could supplement the 30% Gaba deficiency in my brain that could wll be the cause of my insomnia. ( I am sure others have also done the same)

    I came across a lot of body building supplements and indeed many of their ads cite promoting restful sleep as a feature of the supplement. Will they work for us insomniacs ? Has anyone tried them ?

    I have now also spoken to two pharmacists about how to get more Gaba into my brain…..unfortuanately there is no, according to them, magic pill or supplement to replenish Gaba deficiency ….wow was I deflated…they said that any Gaba or derivative supplements are not able to cross the blood brain barrier and so will not do what we would want them to do. They affirmed that there are anti depressants that work on the receptor in the brain that produces the required these chemicals…but the short answer was that there is no neat Gaba supplement to take….

    I did some research and found some products with Gaba derivatives claim to break that blood brain barrier such as kavinace….

    Do you or anyone else have any thoughts or experiences on any of my musings…..

  13. gayle

    I did try a GABA supplement, and it seemed moderately effective–for awhile. I found it in a health food store. I write about it in my book. It just seemed too mild and too inconsistent…
    As far as I know, there isn’t a neat supplement.
    I don’t know about the body building supplements.
    Anyone else out there have any experience with this?
    Gayle

  14. Wow! Love Gayle’s book and finally feeling some validation after nearly a life time of this agony. Like others, I have done EVERYTHING to no avail. I am lucky to get 2 hours sleep a night and mostly none. It has got worse over the years.
    I have been ‘diagnosed’ with Delayed Sleep Phase Syndrome, since if I do sleep it is at 10 or 11 a.m., which isn’t conducive to earning a lviing, certainly not by conventional means. Has anyone else experience of this diagnosis?
    It has been suggested that I put myself thru ‘chronotherapy’ (changing body clock by going to bed 2 hours later or earlier each day), but I can’t sleep at all when I do that. Bright light therapy has also been suggested by the people in Oz who claim to be ‘leading edge’! Yea, right.
    I bought some GABA powder and it does nothing, except make my skin tingle.
    Doctors here (in Australia) generally don’t like giving sleeping pills. Although I was prescribed Seroquel recently, which in high doses is used for schizophrenia. Even the low dose sent me off my brain, with 2 hours sleep, again at 11 a.m. and then slurring my speech etc the next day.
    I have almost got to the end of my rope, and my money and may take that trip to Mexico before too long.
    Am seeing a new psychiatrist soon, tho if he tries CBT with me, I shall punch him, that is like using a band aid on a broken leg, and treats me as if I am stoopid!
    If anyone has heard of/suffers from delayed sleep phase syndrome, would be very interested to hear of your experiences.
    This is torture :-( PS I am a recovering alcoholic, sober 22 years, and I believe this can have an adverse effect …

  15. Me again, just looked up some info on GABA and found this product and have no idea if it is of value or not but thought I’d pass it on: http://www.integrativepsychiatry.net/travacor_neuroscience.html

  16. Regarding any product sold by a health food store for body-builders that might help with GABA production….

    I do know that at one time GHB or, the “date-rape drug”, used to be available on the shelves in health stores and was used (for some reason) by body-builders.

    GHB is currently used as a class IV prescription (XYREM) medication for narcolepsy, specifically narcolepsy with cataplexy. By consolidating the sleep of narcoleptics they are often able to avoid or limit their day-time sleep attacks. In my desparate quest for relief as an insomniac I was able to be prescribed Xyrem off-label. My own experience lasted about 3 months, and it was interesting, but in the end did not prove helpful for me. But I believe that for narcoleptics…and also some insomniacs…it has proved to be life-changing for the better.

    My point is, I believe that Xyrem DOES make one produce GABA or at least it is related to it (my chemistry comprehension close to nil). But it is not easily available; and in MY experience, not easy to take and get used to!

  17. Thanks for the info Marginal1; what side effects does GHB have? Thanks.

  18. to tinacameron regarding side effects of GHB (Xyrem).

    I’m not sure you could say it has any side-effects in a traditional sense. It is actually a metabolite and is naturally produced by the human body. Whether or not it’s natural to take a dosage from an external source….over a long period of time…who knows. There are those who believe regular dosing with GHB has a positive effect on health and even boosts longevity. I’m assuming that it has less long-term side-effects than other pharmaceuticals, but I don’t know.

    My problem was the difficulty of taking it, and research will show you that it appears to be a challenge for many who do take it. You might want to peak at the message board for aboutsleep.com and check out the board for narcoleptics. These folks are highly motivated to have a success with Xyrem, as death may be a side-effect of falling asleep at an inconvenient time like when driving! Overall this appears to be a god-send for that group, though they still report on difficulties with using it.

    For me, the difficulties involved the procedure for taking Xyrem. It is a liquid and is supposed to be taken in 2 dosages, 4 hours apart. It is advised that one set the alarm for the 2nd dose, but I never needed to as I was always awake by then. After taking the first dose, you MUST be close to or IN bed, as you risk passing out cold within 20 minutes (tho, it has taken me longer). While I DID experience sleep after the first dosage, the 2nd dose never put me back to sleep, but left me conscious and agitated…sometimes nauseated…for the next 4 hours. Daytimes I felt no better, nor worse.

    I read that many people have a long challenge of finding out their proper dosage, it is totally individual. Sometimes I’d read of someone who toughed it out for months and FINALLY found relief, along with a “new life” finally free from sleep-deprived fatigue. It still kind of haunts me that perhaps if I’d hung in with it a bit longer, it would have been MY miracle too. I was on it for 3 months, I omitted the 2nd dose soon after starting it due to the experience mentioned above and surely that’s why I never got relief by it.

    Another thing that worried me about it was that when I DID sleep for about the first 2 to 3 hours, it was such a DEEP sleep that I worried about how I would function in an emergency. It would help not to be single. If you happen to be woken out of that sleep, walking is like negotiating the deck of a rolling ship! No thanks, I get by with my standard dose of Klonopin for a few hours sleep each night.

  19. Gayle, I think you previously had a category for RESEARCH, and I don’t see it anymore. Seems like this “front page” is the easiest to view anyway, so I’d like to note some recent research here regarding the genetic basis for insomnia.

    Got the following off the ScienceDaily website and is a report on conclusions from a study conducted by the North Carolina State University on fruit flies. Seems there’s little doubt that genes are involved in sleep and how well we sleep (or don’t sleep).

    ———————————————-

    The study identified almost 1,700 genes associated with the variability of sleep in fruit flies, say study authors Dr. Trudy Mackay, William Neal Reynolds and Distinguished University Professor of Genetics and Entomology, and Dr. Susan Harbison, a post-doctoral researcher in Mackay’s lab. Many of these genes were not previously known to affect sleep.

    Fruit flies within each of the 40 lines were homozygous, or exactly the same genetically, but the lines were completely different from one another, Mackay says. Small glass tubes containing one fruit fly and some food were placed in a machine that uses infrared sensors to monitor the minute-by-minute activity of the flies. If at least five minutes passed without any fly activity, it was calculated as sleep.

    The study predicted that certain important genes would affect sleep duration. Independent verification with mutations in those genes did indeed have an effect on how long fruit flies slept. The study also discovered teams of genes that appeared to act together to affect some portion of sleep.

    “We’re starting to get a glimmer of how groups of correlated genes are overrepresented in different traits, and we now know more about how traits are associated with each other at the molecular level,” Mackay says.

  20. I have yet to see a new entry for SLEEP STARVED but my understanding is that this site will be updated soon. Until then, I would like to remind insomniacs about the potential effectiveness of melatonin supplements, the “sub-lingual” types found at your local pharmacy. The brand I have used in the past is “Webber” and I have taken two to three under my tongue at around bedtime. All things being equal, if your main problem is GETTING to sleep (not necessarily waking up constantly in the middle of the night) then melatonin just might do the trick. Of course, this is not an exact science, I just know that this has provided me, a 30-year old male, with natural sleep at times without any “drug-like effects”. This doesn’t always work though, so it can be a tricky business getting it right.

  21. lucilla

    Thankyou Gayle for writing such an amazing book.
    I have had periods of chroninc insomnia throughout my life. I have also had CFS. What I have noticed throughout the last decade is that when I feel ill with CFS symptoms I sleep and when I feel well I am plagued with insomnia. I can remove all my CFS symptoms by strictly removing sugar from my diet but when I do this the insomnia strikes. It is as if I am too alert ( although after a couple of days of chronic insomnia I am debilitated.) I then eat sugar and low and behold sleep again. It is my personal opinion that I have a predisposition for insomnia/hyperarousal from birth and that due to excessive sugar intake this weakened my ability to sleep. I think it is possibly linked to the adrenal glands and cortisol. Does anyone else have this problem? It obviously makes no sense to the doctors who I have seen as they think that removing sugar from your diet should improve sleep. Well in my case it does the exact opposite.

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