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Quantitative EEG Study Shows Why Clonapin Could be Bad for Us

Discussion in 'Sleep' started by Gamboa, Apr 28, 2014.

  1. Gamboa

    Gamboa Senior Member

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    I am in no way an expert in this field but am wondering if anyone knows if the latest studies by Marcie and Marc Zinn, in which they show do quantitative EEG's to show that the brain waves in ME/CFS patients, specifically delta waves, are increased during waking hours and are directly related to brain fog and cognitive fatigue, are impacted negatively by taking clonapin. Apparently clonapin reduces delta sleep which the Zinn's have found people with ME/CFS already don't get enough of and are then making up for it during the day. It is this delta wave activity during waking hours, instead of when you are sleeping, that makes one feels cognitively like a zombie.

    From Wikipedia: Certain substances, such as benzodiazepines (e.g. Ativan, Valium, Klonopin) seem to have the reverse effect on the time spent in SWS ( short wave sleep) .Instead of lengthening SWS , they are known to shorten the time. While these sedatives can increase sleep duration or shorten the time it takes before sleep-onset occurs, they tend to deprive patients of deep sleep.Slow-wave sleep (SWS), often referred to as deep sleep, consists of stage 3 and 4 of non-rapid eye movement sleep, according to the Rechtschaffen & Kales (R & K) standard of 1968.As of 2008, the American Academy of Sleep Medicine (AASM) has discontinued the use of stage 4, such that the previous stages 3 and 4 now are combined as stage 3. An epoch (30 seconds of sleep) which consists of 20% or more slow wave (delta) sleep, now is considered to be stage 3.Sleep deprivation studies with humans suggest that the primary function of slow-wave sleep may be to allow the brain to recover from its daily activities. Glucose metabolism in the brain increases as a result of tasks that demand mental activity. Other functions slow-wave sleep can affect include the secretion of growth hormone. It is always greatest during this stage. It is also thought to be responsible for a decrease in sympathetic and increase in parasympathetic neural activity.

    The two studies below, by the Zinn's, were presented at the IACFS/ME Conference on San Francisco in March, and were one of the highlights of the 4 day event.


    EEG Peak Alpha Frequency is Associated with Chronic Fatigue Syndrome: A Case-Control Observational Study
    Marcie Zinn, Ph.D., Mark Zinn, MM, Jose Maldonado, MD, FAPM, Jane Norris, PA-C, Ian Valencia, BS


    Cortical Hypoactivation During Resting EEG suggests Subcortical Pathophysiology in Chronic Fatigue Syndrome as Revealed by Exact Low Resolution Electromagnetic Tomography
    Mark A Zinn 1ยง, Marcie L Zinn1, Jose R Maldonado2, Jane L Norris1, Ian Valencia1, Jose G Montoya1,3


    1Department of Infectious Diseases and Geographic Medicine, Stanford University Medical Center, Palo Alto, CA, USA 2Department of Psychiatry and Behavioral Sciences, Stanford School of Medicine, Stanford, CA, USA 3Stanford University School of Medicine, Stanford, CA, US.


    Read Searcher's Report about it here:
    http://phoenixrising.me/archives/24553



    I am particularly interested in this since I was prescribed Clonapin a year ago, by a neurologist, because I was not only having insomnia but also waking up with a migraine almost daily. He felt that I wasn't get enough sleep, a typical ME/CFS problem. For the first 3 months I felt great. I was falling asleep instantly and having solid, heavy, 8 hour sleeps every night ( still had migraines however). Then I started to go downhill and have worsening brain fog, cognitive fatigue and overall decrease in activity levels. I didn't really attribute this to the clonapin until after I went to San Francisco and heard the Zinn's talk. Once home, I happened to come across an article about how clonapin works and when I saw that it reduces delta wave sleep I realized that this was a big problem. I have slowly decreased and have now been off it for a week and I feel so much better. I can't believe how "drugged up" I was and how much of the fatigue, brain fog and just plain coma-like feeling I have been in for the past year were due to this drug. I basically had a sleeping pill "hangover" every day for the past year and was assuming it was because my ME/CFS was getting worse.

    After searching on the net for similar experiences I now am finding many horror studies about sleeping pills. I know they work for some people but perhaps this kind, in the benzodiazepine class, is not good for us, after all.


     
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  2. A.B.

    A.B. Senior Member

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    I'm convinced that sleep quality plays a significant part in my condition. This is a bit hard to explain, but like many ME/CFS patients I have fluctuating symptoms. I tend to notice that they have gotten worse after waking up, because I'm noticable less refreshed than the day before (and usually I'm like "dang, this is one of those days where I'm not going to get anything done"). The way this happens is consistent with a pathological process which might begin during the day, but doesn't become fully apparent until the next morning because it somehow impairs normal restorative sleep.
     
  3. adreno

    adreno 3% neanderthal

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    Sleep meds make it easier to sleep, but restorative sleep is impaired; avoid at all costs. Try to find natural solutions to support sleep, glycine for example:

    http://onlinelibrary.wiley.com/doi/10.1111/j.1479-8425.2007.00262.x/abstract
     
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  4. xchocoholic

    xchocoholic Senior Member

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    Thanks for the info.


    Until they find a better solution for nocturnal myoclonus I'm stuck using Klonopin. I'd be jerking myself awake all night without it. I tried Theanine for several years but it didn't work as well.

    I take .125 mg at bedtime and more during the day if I'm having pre-seizure
    / jittery / like I haven't slept in days feelings.

    I'm using about .3 mg of melatonin and appr. 10 mg of 5htp with this and am feeling mostly awake during the day. I'm using appr. 1/4 of a caffeine pill to counter my drowsiness for now. Maybe not my best idea but it's working for now.

    Higher doses of these REALLY made me feel loopy there for awhile. After 20+ years of cfs, I'm slow to recognize drug induced brainfog. ;)

    tc ... x
     
    Last edited: Apr 28, 2014
  5. barbc56

    barbc56 Senior Member

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    I haven't had a chance to look at the studies.

    @xchocoholic

    I take one mg. of Clonazepam at night for RLS. My neurologist thinks it's one of the better meds. for an overactive nervous system. I also have sleep apnea, lack of deep sleep and a wacky circadian rhythm so I probably wouldn't notice if it affected me. :lol: :sleep:

    Barb
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If one isnt sleeping much then i would say go for quantity over quality.
    I would like to see more research on benzo's and sleep quality as i have seen some conflicting research. One thing i read was that the benzo mogadon/nitrazeapam increases growth hormone, but says it increases stage 2 sleep and reduces stage 4 sleep, supposedly growth hormone is secreted during stage 4 deep sleep?

    I cant remember who it was from here who said that stage 4 sleep is depressed in benzo users only during its initial use and later stage 4 deep sleep returns. From memory this was one persons experience here from a sleep study and was told to them by their doc also.

    Also if one has a movement disorder that interrupts stage 4 sleep then one is going to require something like a benzo.

    I just dont think its concrete to say people dont need benzo's. I would say if one sleeps enough but has poor sleep quality then look elsewhere at first. if one has a reduced amount of sleep and other meds dont help or have other side effects, maybe next day sedation but find benzo's help then go for it.

    i think people who use benzo's need to be educated on tolerance and how to avoid it( drug holidays, intermittent use etc) and also be given a top dose of benzo's to not go over eg equivilant to say 10mg valium. Im just amazed that doctors will prescribe some patients 2-3mgs of klonopin for insomnia.

    Also they need to research why ME patients dont reach stage 4 sleep or have reduced sleep volume, even though they have no use of benzo's or sleep meds.

    Theres more questions then answers when it comes to benzos and sleep/insomnia.
     
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  7. barbc56

    barbc56 Senior Member

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    I've always thought a sleep study should be a recommended test for most patients in our population.

    Several years ago it was discovered that I have sleep apnea. When the neurologist suggested this, I actually laughed but he had the last laugh as it turned out I do have it. There were times during the sleep study, I stopped breathing 51 times per hour. I had no idea!

    Don't let any doctor tell you that you can't have apnea because you don't fit the profile. I know one person who was told she couldn't have sleep apnea since she wasn't obese. Several months later her NEW doctor had her get a sleep study and it turned out she did indeed have it.. A minority don't even snore.

    Apologies as I know I have posted this story many times but sleep is an important issue with this DD.

    Barb
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Barb did u have insomnia or did u have poor sleep quality or abit of both? If insomnia did treating the apnea improve your insomnia?

    Agree that everyone with ME should have a sleep study done to rule out apnea or movement disorders. I wish that once those disorders were ruled out or treated that they could treat the insomnia properly and sleep quality.

    cheers!!
     
  9. Gamboa

    Gamboa Senior Member

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    I've had two sleep studies done, at two different hospitals in two different cities. Both times, no sleep apnea was found. What I found out later, once I became more educated myself, is that the doctors in charge of these departments at these hospitals are respirologists, not sleep experts. They don't know much about other sleep disorders and certainly knew nothing about ME/CFS. They didn't do an in depth analysis of sleep waves etc. so really weren't able to do any more than diagnose really obvious disorders. This was in Canada so I'm not sure if this is the same in other countries. I suspect it is. Sleep apnea is a breathing issue and is in the realm of respirology even though it occurs during sleep. I'd be interested to know what other countries are like.

    The other thing of note is that this study by the Zinn's, which was presented twice recently, at Stanford the day before the San Francisco conference and then again at the San Francisco conference, was showing something new in ME/CFS. I'm not sure if this would have been noticed on anyone's sleep studies prior to this. I'm also not sure if it would show up now. The reason the Zinn's found it was because of the methodology they used: quantitative EEG as opposed to regular EEG. These abnormal wave patterns during sleep and then during waking hours found in the ME/CFS patients could only be seen using the quantitative method. The Zinn's said, during the question period afterwards, that this is still mostly a research method but that it could be done clinically since it picks up so much more abnormal patterns than regular EEG's. Regular EEG's can miss abnormal brain waves in many epileptics apparently and they think it is a fairly useless test. QEEG , according to Dr. Zinn is much more sensitive since it removes a lot of the junk stuff. I don't understand it but one of them said that in a normal hospital EEG, the difference between an epileptic and a non-epileptic is 2%. If using QEEG, the difference jumps to 95%. Despite this, there is still a lot of controversy regarding use of QEEG, and AETNA has issued this policy. http://www.aetna.com/cpb/medical/data/200_299/0221.html

    Hopefully the Zinn's will keep doing their research and more will follow and we will learn more about what is going on in our brains ( or not going on, as is sometimes the case).
     
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  10. xchocoholic

    xchocoholic Senior Member

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    My nocturnal myoclonus was dx at a sleep disorder clinic in the early 90's. I would think it could be diagnosed at home by video taping yourself sleeping tho.

    Interesting info on qeeg vs eeg. Tx ... x
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Gamboa i have had the same experience. They probably also need a neurologist involved, probably asking too much but a neurologist who is up to date on ME research maybe??? Im starting to think that inflammation in the brain is what is going on, inflammatory cytokines (TNF) and neurotransmitters like nmda/glutamate, inverse cortisol pattern and circadian rthym problems.

    The next question is what do we do about all this???
     
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @Gamboa, I had two sleep studies here in the U.S. and both of the 'sleep specialists' were respirologist. Absolutely nothing was accomplished.
     
  13. barbc56

    barbc56 Senior Member

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    Fortunately, I have a neurologist whose specialty is sleep disorders. It's important that the physician is certified through the American Board of Sleep Studies or a similar certification if you live elsewhere. The sleep lab should also be certified.

    I only noticed a minor improvement as far as me/cfs/fm, but at least the apnea is resolved as it can lead to serious health problems.

    Barb
     
  14. Nielk

    Nielk

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    Do you use a cpap?
     
  15. barbc56

    barbc56 Senior Member

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    @Nielk

    Yes. For three years now.

    Barb
     
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  16. dannybex

    dannybex Senior Member

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    Hi XChoco -- I thought of you when I read this comment on Amazon regarding a book about nightshade intolerance:

    "Finally - for all you chocaholics - Nestle and Hershey both put PGPR - an emulsifier made from eggplant - in their chocolates several years ago. The muscles on my spine were drawing up so tight I had to have the rib head at T-10 reset four times before I discovered the cause."

    There are also quite a few reports of nightshades connected to RLS:
    https://www.google.com/#q=nightshades RLS
     
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  17. barbc56

    barbc56 Senior Member

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    @dannybex

    I've never taken nightshade and usually not supplements unless I have a deficiency. However, for RLS, I have to be careful of caffeine later in the day and yup, chocolate. Caffeine definitely makes the RLS but haven't noticed chocolate but maybe I should pay closer attention to this. I don't know if the same applies to nocturnal myoclonus.

    As an aside low ferritin is connected to RLS and other neurological disorders even with normal blood counts in the usual blood tests .Also low Vitamin D. I should probably do a post on this.:rolleyes:

    Barb

    ETA I found a thread on PR that addresses low ferritin..

    http://forums.phoenixrising.me/inde...evels-fatigue-and-iron-supplementation.18664/
     
    Last edited: May 3, 2014
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  18. dannybex

    dannybex Senior Member

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    Thanks Barb, I was aware of the low ferritin, vitamin D (and also low folate) connection to RLS, but I'm sure it's helpful info to put out there. Ferritin can also be falsely elevated during infections, so the test can be difficult to interpret depending on the circumstances.

    I certainly hope you're not "taking nightshades", and are aware of the nightshade content in certain foods. These compounds inhibit acetylcholinesterase, the enzyme that breaks down acetylcholine, resulting in overstimulation of certain neurons, messing up calcium and potassium balance, etc. There's also a 1,25 d connection, which can cause all sorts of trouble as well.

    As for Klonopin/clonazepam, it is the only benzo that has anemia, eosinophilia, leukopenia, thrombocytopenia as "side effects". It also may deplete biotin, folate, vitamin d and k, plus calcium and melatonin. Having said that, I take it myself, but wish I had never started. Can't wait to get off the drug, but realize it may take awhile.
     
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  19. barbc56

    barbc56 Senior Member

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    @dannybex

    You are right, ferritin levels that are normal in one person may not be for another. Unfortunately, the range is so wide many patients are considered not be deficient.

    Also for things like sleep apnea, where you stop breathing, affects the red cells and can make you more prone to anemia.

    For example many doctors want to see levels above 50. However, for RLS, you want to have a reading of at least 120.

    Barb

    ETA I got the above information from my sleep neurologist as well as the hematologist that I saw briefly until my ferritin levels remained good for a year.
     
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  20. xchocoholic

    xchocoholic Senior Member

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    Great info. Thanks. X
     
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