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Wakeup Call for Insomnia: It's time to treat fragmented sleep like the brain disorder it is

heapsreal

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http://www.aan.com/elibrary/neurolo...ovid.com:/bib/ovftdb/01222928-200602040-00005
I woke up several times last night thinking about everything I had to do this week. I tried relaxation exercises, then counting sheep. Finally, at 4 a.m., I gave up trying to go back to sleep. Now, it's 4:30 a.m. as I sit at my computer and write this with a cat on my lap and a steaming mug of coffee on my desk. It's dark outside and the world seems to be asleep-but I know I am not really alone. More than 70 million Americans suffer from insomnia, according to the National Sleep Foundation. That's nearly a quarter of the U.S. population-and a major public health problem!
Is sleep overrated? The authors of a recent Institute of Medicine report don't think so. They cite many adverse effects of not getting enough sleep, including high blood pressure, diabetes, obesity, stroke, and depression. Too-little sleep also contributes significantly to automobile accidents as well as workplace injuries and mistakes. And it adversely affects a person's ability to think and make decisions.
Interestingly, many of us wear our ability to get by on a few hours of sleep a night like a badge of honor. This is especially true for physicians, many of whom have been chronically sleep-deprived since their first days of medical school. Ironically, this same Institute of Medicine report recommends that education about sleep disorders be integrated into the medical school curriculum-so that physicians will be better able to recognize and treat the large number of patients in this country who have sleep disorders. My hope is that this will lead to better sleep habits for physicians and empathy for their patients who have difficulty sleeping.
And so it is extremely timely that this issue of Neurology Now focuses on the most common of sleep disorders: insomnia.
We all have a bad night every now and then-just as I had last night-for many reasons. When it happens repeatedly, this takes a toll on the entire body and leads to brain changes that perpetuate a vicious cycle. As we learn in our Insomnia Special Report, people who have difficulty sleeping tend to have overactive brains at night. A brain imaging study showed that sound sleepers had quiet, peaceful brains while asleep; people with difficulty sleeping, by contrast, had too much activity in certain brain regions even when they were asleep.

All of which underscores the new view of insomnia as a brain disorder. Research is now showing that it's time to put to bed the notion that insomnia results from psychological problems. As our cover story shows, it is a neurological disorder warranting a nine-page Special Report.
Scientists now think that rather than being a symptom, insomnia may actually be the trigger for other brain disorders. Consider the relationship between insomnia and depression. It has been recognized for years that both conditions often occur together. We used to assume that the depression caused the insomnia. Now we are wondering if it's not the other way around, and that maybe depression can be staved off by treating insomnia quickly.
An important point to take away from all this is that disorders of sleep are very common. If you are one of the countless Americans who have insomnia or any other sleep disorder, there are effective treatments available to help. Our Special Report describes the latest insomnia treatments-from sleep medications to lifestyle modifications.
Of course, the first step to repairing your sleep is to talk with your doctor about your symptoms. Consistently restful sleep is important for your physical and mental health.
Sweet dreams.
Robin L. Brey, M.D
 

barbc56

Senior Member
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Interesting article, heapsreal. I believe that everyone with our DD, needs a sleep study, if having sleep problems and many of us do. My sleep study picked up a lot of problems. Some resolvable and helped my symptoms, mostly pain. Didn't cure me but it's all relative

Barb C.:>)
 

heapsreal

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Also need to be able to sleep for a sleep test to be effective. I had a 9 minute period of sleep and a 12min period of sleep in an overnight sleep study. Apparently ruled out sleep apnea and gave me a crappy prochure on sleep hygiene. Sleep problems fit into the neurological aspect of me/cfs, i think something there is 'broken' in many of us. Yes getting good sleep i think would improve our function greatly.

cheers!!!
 

August59

Daughters High School Graduation
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Upstate SC, USA
I agree heaps. The sleep doctor I'm going back too is very good and actually is called upon to do seminars for a lot of neurologist that claim they are sleep specialist, but are in fact lacking a lot of the necessary fine tune trainig. He has spent a week with Jazz Pharmaceuticals talking with their research people and been through the factory and saw the absurd things the FDA required them to do. He uses a lot of different dosages that Jazz tested but was not allowed to put into print. He uses in combination with some other meds to make work possibbly better and not have to take as much. He still has very good luck with trazadone, but the neurologist always question him on it. He says they always instruct patients to take it at bedtime. He has you take trazadone 2 hours prior to going to sleep, so you will be getting to you peak deep sleep stage at the time trazodone is at it's peak. If a patient waits till bed time to take it the peak times are mismatched and they took it so late they have a hangover. The other downside to trazodone is quite a few people are either mildly allergic to the medicine or a filler or it is just a side effect for some people and I'm one of them. If I take it my nostrils get inflammend enough to make it not viable, but that was before I had surgery, so it may be okay now. He has at times prescribed 3 different meds at the same time, but it was what worked for that patient. He uses Ambien CR 12.5mg and prescribe 6ml of Xyrem at bedtime and skip the second dose of Xyrem. The patient still got 7 - 8 hours of sleep and had a very good deep wave sleep during their first cycle. Elderly people tend to get a deep wave sleep period during the first cycle, but due to whatever the reason they never go back to deep wave sleep during second cycle. Could be aging and the fact the brain has cleared itself (that's not the right term) during the first cycle and do not have the need for deep sleep during second cycle and some elderly people actually feel worse if they are forced into a second deep wave sleep with Xyrem. He said there are just a lot more variables in sleep than you would ever imagine.

In respect for quality sleep he has people cure their sleep apnea (by whatever means) or correct their sleep patterns and cycles. In doing so a high percentage of their bodies will correct hormone changes, increase growth hormone of course, lower blood pressure enough to stop the use of medication, type 2 diabetics maintain extremely good glucose, triglyceride, HDL, LDL and H1ABc(?) levels without the use of insulin, metformin anymore if the will maintain a decent diet and mild, but consistent excercise (even just walking 30 minutes 3 times a week), some were on the verge of kidney disease (I don't think he was referring to dialysis or anything, but just elevate or abnormal lab values) and it resolved itself. We have all these disorders that sleep may possibly fix, but if the sleep becomes broken it can't be considered a disorder. It seems like everyday there is something to show how broke the system is, but you very seldom are seeing anything to fix it

To me we are caught in a perpetual cycle and we do not know what caused this disruption and we need to find out what caused it and exactly what it is if it is a pathogen or autoimmune disorder and treat the viruses, bacterias, hormone imbalances, fix the methylation cycle and fragmented/abnormal sleep patterns to ever have a hope of being reasonably cured. I know for me that I will have to slowly recondition myself in a healing manor. It takes me 5 or 6 tries to get out of bed in the morning because my calves will not stretch out enough to keep my balance.

I'm praying that these studies that Dr. Lipkin and all of the researchers working on his studies, Dr. Montoya, Dr. Peterson and Dr. Klimas and the many more that I can't name can bring all the information they can find and look at it collaboratively and hopefully find the doors thats being left open or unlocked without permission and try to put together a game plan to bring us up out of this hole we are in. I hope it happens as soon as possible. I've been getting about 3 hours sleep a night for over a month and it has beat me down to a crawl almost. I'm seriously thinking about alking to my children and brother and have "DNR" form signed in case something happens to me. I'm trying to get Medicaid and Social Security, but it is taking so long and I can't wait another year for a lawyer to try it in front of the judge. My states average is 381 days for a SSDI hearing.

I hear what you are saying heaps and it is just so real and unjust to have to live this way in any country in this world. There should be no origin in this world left untouched as a possible cause to these diseases and I do truly believe a lot of them are very related. Food additives and packaging made big changes in the 80's and ther sure was a sharp decline in cases od CFS back then. As much evidence that is available about the destruction of what what BPA does to the body and it is still legally used in packaging. There may be on polymorphism that we have that allows BPA to change one thing to another and completely dismantle our immune systems (this is just an example, but I do believe it to be a possibility along with 20 other things.)

Thanks for listening to the rant, but heaps thread caught me on a high note. I doubt I'll be able to type this much again in a year. God bless all of you!
 

jeffrez

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Thx 4 article. I'm in a negative sleep pattern myself past week - mind starts racing, heart starts pounding as soon as head hits the pillow. Had a mini-crash, then got ramped up by a different form of licorice than I normally take, and next thing you know, insomnia kicks in more severely again. Up til between 4-6am the past week or so, ugh.

Sometime in the next couple of days - maybe tomorrow if I can manage - I'll check out my EEG and see what brain waves are out of whack. Like the article says, sometimes the brain is overactive with too much fast wave activity, but also can be overactive with slower waves that disturb the normal super-slow delta sleep waves from kicking in in what's called alpha intrusion. Correcting some of these dysfunctional brainwave patterns with neurofeedback can often restore at least a semblence of normal sleep.
 

heapsreal

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A list of meds that help improve deep sleep, some we have tried, eventually tolerence kicks in, another case of swapping and changing, the link acknowledges this could be an issue by saying the studies on these meds were very short, an interesting read although it does mention sleep restriction, we practise sleep restriction all the time, it doesnt work, lol.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824211/
Drugs Known to Increase Slow Wave Sleep
DrugMechanism of actionReference
Tiagabine GAT-1 inhibitor Mathias et al., 200136
Gaboxadol Selective extrasynaptic GABAA agonist Deacon et al., 200721
Gabapentin α2-δ site on voltage-gated calcium ion channels Bazil et al., 200537
Pregabalin α2-δ site on voltage-gated calcium ion channels Hindmarch et al., 200538
GHB GABAB/GHB agonist Pardi et al., 200639
Ritanserin Partially selective 5HT2A receptor antagonist Dahlitz et al., 199040
Eplivanserin Antagonist of Serotonin Two A Receptors (ASTAR) Hindmarch et al., 200822
Mirtazapine Multiple receptors, including 5HT2 antagonist Shen et al., 200641
Olanzapine Multiple receptors, including 5HT2 antagonist Sharpley et al., 200542
Trazodone Multiple receptors, including 5HT2 antagonist
Mendelson, 200543
 

heapsreal

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OMG, that sucks!!!!! 9 and 12 minutes is not even enough to rule out sleep apnea! I mean I doubt thats the prob anyways, because apnea can make you wake up frequently, but not prevent you from falling asleep in the first place. See, I didnt even a medical degree to come to that logical conclusion.

I could NEVER do another sleep study in a lab. Talk about stressful situations, knowing and thinking I must sleep or this is all a waste of time and money....! I had mine done in lab years back before sleep got really bad for me. If they could do comprehensive sleep studies in an out patient setting in a patients home I would do that. But those usually only check for apnea.

Those nasty electodes they glue to your hair are gross and sticky hard to get out!

Thats how my sleep would be if i didnt use meds even at home, maybe abit longer, still crap, lol.
 

TheMoonIsBlue

Senior Member
Messages
442
Me too.

FYI I think Gaboxadol got the kibosh before it went to market

There has been nothing really new for sleep since zolpidem

I was wondering about the med Flexeril but seems like it causes depression in a lot of people. Dont know about Zanaflex.....
 

Enid

Senior Member
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UK
Quite agree heaps - I had sound sleep for the first time when on a course of (highish) Gabapentin given for pain but knew it was doing so much more in the brain. Don't really know the answers but the restorative deep sleep cycle is restored at last - attention to all health matters seems to have aided too.
 

heapsreal

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i think us with cfs/me we need to find the cause and treat it, then allow of brain/sleep centre to recover and work properly, maybe a brain transplant:) Sleep meds really are just treating the symptoms but thats all we got and not treating this symptom make us worse. Adequate sleep is my most unstable symptom and can flatten me very quickly from a somewhat moderate functioning cfser to a bag of crap.

Moonisblue, zanaflex is an alpha 2 agonist which can help with sleep and sleep onset, has a short half life. I have used it for those occassions when i wake up at 2-3am and really need to get another couple hours sleep to function later that day. or if u need a break from benzo's but need to use it with something else to keep u asleep, maybe like the way sonata is used, i dont have access to sonata, bugger.

A guy i spoke to with cfs/me a few years ago fixed his sleep problems with growth hormone, other reports i have read its been hit or miss but those that its worked for its fixed it apparently and no need for further treatment???? But they did use GH for a prolonged period like 12 months, out of my price league. Maybe it works by repairing that part of the brain that regulates sleep and as we know we need sleep to produce adequate levels of growth hormone.

Those of us that cant get xyrem or growth hormone i think our best option is to try and ride the bad periods out aarrgghh!! and the rest of the time try to alternate between different meds or combo's of different meds/supps. to others who dont have severe sleep problems we sound like druggies but i think we are probably more aware of what meds we are taking and are being careful not to become tolerent to them and raise doses cause if it does occurr we are buggered. this alternating meds is helping us to avoid this. i wouldnt say we are addicted but reliant on meds for sleep. Im certain if i hadnt used a sleep med i would still be having severe sleep issues, probably sitting in the corner in the fetal position rocking back and forth.
 

alex3619

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When I had my first sleep study in the 90s they came in late in the night and asked if I was OK because I had not fallen asleep. I did get a couple of hours of sleep before dawn but that was it ... and its lights on at 7am or something, I don't recall. In my case it was indeed long enough to diagnose obstructive sleep apnoea, but then nearly half of all CFS patients have it (not sure what the percentage is using ME criteria). Bye, Alex

PS The link appears to be broken on the journal page. Does anyone have a direct link to the pdf? Just in case anyone is wondering, the link given is only to the editorial on the article.
 

Desdinova

Senior Member
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276
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USA
Also need to be able to sleep for a sleep test to be effective. I had a 9 minute period of sleep and a 12min period of sleep in an overnight sleep study. Apparently ruled out sleep apnea and gave me a crappy prochure on sleep hygiene. Sleep problems fit into the neurological aspect of me/cfs, i think something there is 'broken' in many of us. Yes getting good sleep i think would improve our function greatly.

cheers!!!
Yeah the sleep hygiene brochure was given to me as well along with the push to see a sleep psych. It wasn't the sleep study experience I was looking for, since it became clear to me that they were only focused on zeroing in on apnea. I don't think they focused on my brain state in the least. There focus was completely pulmonary IMO.

I found it funny that the woman who observed my sleep sessions kept commenting if I had slept during each part of it. Part of why I'm convinced the doctor was only focused on pulmonary issues too specifically. Which has lead me to wish I had went somewhere that didn't have pulmonary in the the Name of the center.
 

soxfan

Senior Member
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995
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North Carolina
I slept about 2.5 hours during my sleep study..they said it was definately enough time to rule out sleep apnea and restless leg syndrome. The conclusion they came up with was that I have fragmented sleep..well gee I think I knew that already. The doctor also said my poor sleep quality is from an infection that attacked my brain and could be permanent.

I couldn't find a doctor who wasn't a pulmonary specialist as well as sleep disorder so when I went to the office visit there were books on CPAP machines and big posters on the wall about sleep apnea so I knew right off that was what he primarily deals with.

To have a refreshing nights sleep would be soooo wonderful
 

K2 for Hope

ALways Hoping
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This is really interesting as I had 2 sleep studies 2007 & 2009 (I think)

One had an intern working for them and he said I DIDN'T have Sleep Apnea. Then the Dr came in later and said I should get their CPAP machine for Sleep Apnea for a couple thousand dollars.... Hmmm..... I guess someone didn't tell the Intern there was a kick-back...

The other one was for a research study. (I didn't know.) And that Dr said I should try this new drug he was working on, but it would cost me a grand a month because it wasn't FDA approved yet....

Both tests said I averaged 4 hrs sleep/night and no Delta sleep and I needed to fix that..... Uh huh, but, of course, no one agreed on the solution....
 

heapsreal

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This is really interesting as I had 2 sleep studies 2007 & 2009 (I think)

One had an intern working for them and he said I DIDN'T have Sleep Apnea. Then the Dr came in later and said I should get their CPAP machine for Sleep Apnea for a couple thousand dollars.... Hmmm..... I guess someone didn't tell the Intern there was a kick-back...

The other one was for a research study. (I didn't know.) And that Dr said I should try this new drug he was working on, but it would cost me a grand a month because it wasn't FDA approved yet....

Both tests said I averaged 4 hrs sleep/night and no Delta sleep and I needed to fix that..... Uh huh, but, of course, no one agreed on the solution....

the second test sounds more accurate as this is whats commonly found in me/cfs people, good to see they may have had a med for it(probably xyrem) but as always everything is so dam expensive. It shits me that people can make GHB in their own homes for next to nothin but a drug company make it and the price is so rediculously high that most cant afford it.
 

Otis

Señor Mumbler
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I've had 3 sleep studies over the 15 years of my increasingly unraveling sleep. The first was joke and was a scam to sell me CPAP, but I also referred to pulminologists. The problem is that they get little or no training in sleep neurology. So if it's not apnea they are fumbling around in the dark. The second study showed no slow wave - stages 3, 4 - now just called stage 3. The doc I saw that time had a clue about trying to push me into sleep. She used trazodone which helped me more sleep but never got me into slow wave sleep. Most recently, I had another study which one again showed no slow wave sleep. This hot-shot pulminologist looked me in the eye and told me that 'all people he sees in their 40s got no slow wave sleep'. I was so dumbfounded I couldn't even point out that I was in my mid-30s during my previous test. What I wish I'd said is that he should publish his results because that flys on the face off most, if not all, the published work on sleep architecture. I had zero income at the tike so it was easy to break that 'relationship'

The field desperately needs neurologists to help those of us who don't for the standard apnea mold that the pulminologists understand.

<end rant>

I've had access to most of the slow wave sleep-enhancing meds without much luck except getting more sleep quantity, without improved quality. I've tried xyrem and it zaps my REM sleep which is actually worse for me.

Sleep tight.
Otis
 

jimells

Senior Member
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northern Maine
Apparently ruled out sleep apnea and gave me a crappy prochure on sleep hygiene.

Hi Heaps, we must've seen the same idiotic sleep doctor!

In spite of numerous 'non-specific' abnormalities, here is the doctor's 'recommendation'

Clearly the patient needs to avoid drowsy driving and/or sleep deprivation - try to achieve 8 hours of sleep per night.

It's truly amazing they can get paid for writing such rubbish.