1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

How do we treat severe insomnia for cfs/me

Discussion in 'General Treatment' started by heapsreal, Feb 8, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,401
    Likes:
    4,797
    australia (brisbane)
    There has been a few anti sleep med threads posted and they are interesting. I can see these tapering systems working for those who had a stress related issue causing insomnia and then being reliant on sleep meds. Maybe a slow taper off the meds could do the trick.

    But how do we treat the cfs/me patient who has severe insomnia and has never used benzos before, minimal success with alternative treatments. These people like alot of other me/cfs people who have ongoing neurological problems and insomnia being a big issue. These people have had some type on neurological injury that has caused this sleep dysfunction, What else is out there. With Severe insomnia most natural treatments do diddly squat. Are we trying to get people to stop using sleeping pills as we slowly watch their ability to sleep get worse.

    For most of us i dont think benzo sleep meds cause our sleep problems, but the problems arise when after our initial infection we get that causes cfs has damaged the hypothalamus which controls our sleep. Also sleep dysfunction can be caused by adrenal fatigue and or inappropriate cortisol response through out the day interferring with proper sleep function. I think we all individually have to find the cause of their sleep problem.

    At the moment i cant see anyway of treating sleep dysfunction in cfs/me with neurological causes, or adrenal fatigue causes. I think using benzos to treat these conditions in cfs/me is justified, if they arent treated then there will be alot less sleeping going on and less healing as well as losing the protective effects of benzos on the nervous system. If theres another way to treat this sleep dysfunctiion, then i would like to have a look.

    cheers!!!!
     
    Sammy likes this.
  2. taniaaust1

    taniaaust1

    Messages:
    8,263
    Likes:
    5,216
    Sth Australia
    ive obviously missed the anti sleep drug posts thou I have noticed the ones in which some are addicted. I do believe one can become easily addicted to some of the drugs out there (doctors wouldnt be so wary about prescribing them if that wasnt the case).

    Its kind of a case of being darned if you do and darned if you dont.

    I can end up suicidal if I havent had one wink of sleep in days but are oh so so tired.. it also starts worsening my whole ME and immune system. I start going into halluncinations and end up depressed as after days of no sleep at all or weeks of only 2-3 hrs a night.. becames intollerable. The most length of time Ive gone within one wink of sleep is 5 whole day/nights without sleep, unable to sleep.

    I know myself nothing natural solved my sleep issues. No response at all to all the herbs I tried.. very very limited response to melatonin thou it helped by up to 2 hrs in my case. For myself the only answer is other meds. My only other opinion is to be constantly extremely sleep deprived.

    I agree with you there that we all need to work out what our sleep issues are if possible. Different sleep issues do have different treatments and meds for them. eg melatonin probably wont do anything for one who dont have a circardian cycle issue.

    Normal sleep drugs cant usually cure circardian issues as its not just sleep which is the issue, all the hormones are out of wack too and even with making the person sleep at a certain time, those hormones and cycles of things is still out of wack. Light therapy is one thing sometimes done for this issue.

    Mine are a reversed circardian rhythm possibly along with having a longer then 24 hr sleep/wake cycle which also screws things up. I also have an abnormality with my brain waves with two of my EEGs showing in the past my brain dont shift into right brain state when I shut my eyes (thou my last one for the first time was normal).

    One needs to look at what is causing a sleep issue. pain.. then that needs to be treated, anxiety... then that needs to be treated ... another issue??

    Unfortunately one thing Ive found is that most doctors dont have a clue about different sleep issues and tend to try to lump "insomina" into the same heap.
     
    Ocean likes this.
  3. runner64

    runner64

    Messages:
    60
    Likes:
    1
    Hi! It's a big catch22 when many of us are very neuro affected to the extreme from CFS etc. I am like you are. And I'm very sorry if offended you or anybody else. My post you referred to you misunderstood. Tapering is to control physical side effects. Not psychological.

    Benzos can change the brain's function depending on genetics. On the klonopin and valium thread here, reply #68 explains this with the links.

    With tapering the brain can keep up with the reduction of the drug and heal on the way off stopping or easing symptoms of head pressure, burning, many extreme physical symptoms/side effects. Freddd on this forum is very knowledgeable on this as well. I just wanted people to understand factually how these drugs change a person's brain "function". If one is on and ever wants off, go to benzo.org/uk. That site tells the truth.

    The side effects can render a person non functional from the physical sense just like this disease. There are many more above and below on that link.
    http://www.benzo.org.uk/manual/bzcha03.htm#12

    Benzo and sleeping pills can strip the "protective" coating which is the mylen sheath off the nerves. Causes nueropathy. They are only a central nervous system "depressant". That means they slow it down and "sedate" it while on it. Not protect.

    I met with research Dr. James Wright at University of British Columbia a few weeks ago.
    My cns is still recovering from the benzo. I was physically sick and in bed for a year off the drug. I'm writing a book and there's many. I asked research Dr. Wright, why is this still going on? People aren't told. He basically said with side effects we're collateral damage. $$. He's one of a handful of doctors that is truthful and knowedgeable about these drugs. He has a CDA govt funded group, therefore a non pharmaceutical company funded group that study drugs, understand how they work, side effects, and prescribing behaviors of the mainstream medical community. This is what he does.

    This is what Dr. Malcom Lader who I've corresponded with says about side effects of Ativan=Lorazepam (benzo). Paragraph 12. Paragraph 10 he refers to side effects and the first couple of paragraphs he talks about intolerable symptoms, which are side effects. Physical. He talks about the mainstream not educated with them and creating extreme dependence to masses. THIS is why I wrote what I did.
    http://www.benzo.org.uk/lader2.htm

    There are Dr.'s like Lader working beside MP's in the UK Parliament still after 30 years trying to get this out in the open to educate the mainstream doctors.

    I'm sorry if I offended anybody. I'm not trying to dissuade anyone. We need sleep. I get it. I just wanted people to know it's a possibility. These are personal decisions for people and I do understand that. We all do what we need to do. Like I said, it's a catch22.
     
  4. Nielk

    Nielk

    Messages:
    5,464
    Likes:
    6,017
    Queens, NY
    Hi Runner 64,

    I think this was already posted somewhere else but, I'm going to post it here just as an explanation that I have been given from a few ME/CFS specialist as to why they prescribe Klonopin for their patients. As you'll read it, you'll see why they don't seem to think that it's a problem for CFS patients to be on this drug or rather the benefits outweigh the problems - even the withdrawal problems. This is the reason why I originally was willing to take it and even though I am considering tapering, I am not sure if that's the right answer for me. Even if I'm successful with the tapering (which I have not to date been), how do I know that my brain is healed and that it doesn't NEED the Klonopin to calm it down. I am not recovered by a long shot. If anything, I am worse off now then ever. I am at the point that I either raise my level of Klonopin or decide to taper off but am not convinced there is a safe way for me to do this.




    Dr. Paul Cheney Discusses the Benefits of Klonopin
    ProHealth.com
    by Carol Sieverling
    October 12, 2001


    Editors Note: The following is based on a recent interview conducted by Carol Sieverling with Dr. Paul R. Cheney, M.D., Ph.D., and the article "CFIDS Treatment: The Cheney Clinics Strategic Approach" (CFIDS Chronicle, Spring 1995). Dr. Cheney gave permission to share this information, but has not reviewed or edited it.

    Many CFIDS specialists prescribe the drug Klonopin. In the October 1999 issue of The Fibromyalgia Network, nine CFS/FM specialists summarized their most effective treatments, and six included Klonopin. Interestingly, the three who did not are primarily FM specialists.

    Dr. Cheney prescribes Klonopin to address a condition associated with CFIDS called "excitatory neurotoxicity." To explain this condition to patients, he draws a line with "seizure" on the far left and "coma" on the far right. A big dot in the middle represents where healthy people are when awake. A dot somewhat to the right of the middle indicates where healthy people are when asleep slightly shifted toward coma. He highlights in red the left portion of the line, from seizure to the middle, and labels it "Neurotoxic State" (damaging to the brain). He highlights in blue the right portion of the line, from coma to the middle, and labels it "Healing State."

    In CFIDS, an ongoing injury to the brain shifts patients toward seizure. A dot to the left of the middle, marked "injury," represents the position of CFIDS patients. This puts us in the red "Neurotoxic" zone. When we shift toward seizure, we often experience "sensory overload." Its as if our brains "radar" is too sensitive. Our neurons (nerve cells) are sensing stimuli and firing when they should not. This causes amplification of sensory input. Light, noise, motion and pain are all magnified. At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired." The "wired" feeling is the slight shift towards seizure that occurs as a result of the excitatory neurotoxicity.

    Cheney frequently uses the term "threshold potential" when discussing excitatory neurotoxicity. (Think of the threshold - bottom - of a doorway. The lower it is, the more accessible it is. When it is at floor level, everything can enter. When it is raised, access is restricted to taller people. If it is too high, no one can enter.) Threshold potential refers to how much stimulus it takes to make neurons fire. If the threshold potential is too low, even slight stimulation is "allowed to enter" and is detected by the neurons. This causes the neurons to fire, resulting in sensory overload. If the threshold is dropped to nothing, all stimuli get through and the neurons fire continuously, resulting in a seizure. If the threshold is raised, only stronger stimuli can make neurons fire. A healthy persons threshold potential naturally rises at bedtime, promoting sleep. If the threshold potential is too high, you feel drugged or drowsy. If the threshold potential is raised extremely high, coma results.

    Two receptors in the brain, NMDA and GABA, determine the threshold potential. During the waking hours of a healthy person, NMDA and GABA should be equally active. This balances the person in the middle of the seizure/coma continuum. NMDA stimulates, and GABA inhibits. If NMDA increases, one moves toward seizure. If GABA increases, one moves toward coma.

    In CFIDS, NMDA is more activated than GABA, lowering the threshold potential. This causes neurons to fire with very little stimulation, resulting in sensory overload. This condition of excitatory neurotoxicity is dangerous. Dr. Cheney emphasizes that in an attempt to protect itself, the body will eventually kill neurons that fire excessively. He states that brain cell loss can result if this condition isnt addressed.

    How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheneys most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, youll experience greater clarity and think better. If the daytime dose is too high, youll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.

    Dr. Cheney most frequently prescribes the combination of Klonopin and Doxepin, along with the supplement "Magnesium Glycinate Forte." Magnesium Glycinate alone is a good choice for the more budget minded(www.ImmuneSupport.com sells it as "Magnesium Plus".) A common dosage of magnesium is 200 mgs at bedtime. Too much magnesium can cause diarrhea, though glycinate is usually the best tolerated form.

    Cheney prescribes Doxepin in the form of a commercial elixir (10mg/ml). At low doses, this tricyclic antidepressant acts as a very potent antihistamine and immune modulator. Doxepin acts synergistically with Klonopin to assist sleep, and may improve pain. Patients tend to be very sensitive to Doxepin, which can cause morning fog and fatigue if the dose is too high (5 to 10 mg or higher). He recommends starting at two drops a night and gradually increasing the dose until "morning fog" becomes a problem. Most patients cant tolerate more than half a cc.

    On a handout entitled "Neuroprotection via Threshold Potentials," Cheney lists six substances that can protect the brain. Under the category "NMDA Blockers" Cheney lists:

    1. Parenteral magnesium and taurine (intramuscular injections of magnesium and taurine, usually given with procaine)
    2. Histamine blockers (Doxepin Elixir)
    Under the category "GABA Agonists" (increases GABA) Cheney lists:
    3. Klonopin
    4. Neurontin
    5. Kava Kava
    6. Valerian Root

    Klonopin is taken "day and night"; Neurontin "night, or day and night"; kava kava daytime only; and valerian nighttime only. The first four are by prescription, the last two are herbs. In my limited experience, only certain patients are put on magnesium/taurine injections, and then only for a limited period before switching to oral supplements.

    Many myths abound concerning Klonopin. When asked about these myths, Dr. Cheney shared the following information.

    MYTH NUMBER ONE: THE GENERIC IS JUST AS GOOD.

    When the generic Clonazepam came on the market, many patients switched to it because it was less expensive than Klonopin. Cheney then began hearing that most patients had to take more Clonazepam to get the same effect. Generics arent exactly identical to the original products, and with most drugs the slight variations dont matter. However, most CFIDS patients can tell the difference between Klonopin and its generic form, Clonazepam. Most find Klonopin to be more effective.

    MYTH NUMBER TWO: KLONOPIN IS ADDICTIVE.

    Dr. Cheney was adamant that Klonopin is not addictive. In treating thousands of patients, he has never seen a patient become addicted to Klonopin. He reviewed the definition of addiction, stating that it involves:
    (1) psychosocial disruption, (2) accelerated use, (3) inappropriate use, and (4) drug seeking behavior.

    Dr. Cheney said a case might be made that Klonopin is habituating. Its true that it cant be stopped suddenly. You must taper off of it gradually. However, he was cautious about even calling it habituating. The process of tapering off a drug is not the same thing as withdrawal, a term that implies addiction.

    Dr. Cheney said to keep in mind that Klonopin is given for a physiological problem excitatory neurotoxicity. Its prescribed to adjust the threshold potential: to keep neurons from firing inappropriately and being destroyed. He stressed that Klonopin should never be given unless you intend to raise the threshold potential. He stated, "Problems arise when you begin to use benzodiazapines for reasons other than threshold manipulation." However, CFIDS patients have a "threshold potential aberration" and need Klonopin (or something similar) to avoid brain injury. Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    On the other hand, trouble arises when someone who still has an injured brain tries to come off Klonopin. Its like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, its not because the drug is addicting, and its not withdrawal. The condition still exists, and the body lets you know it has a legitimate physical need for the drug. Cheney stated, "When a CFIDS patient who is still experiencing the underlying mechanisms of brain injury goes off Klonopin, there is a burst of excess neural firing and cell death. Thats the havoc we hear about that is mistakenly called withdrawal."

    MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.

    Dr. Cheney said that he honestly doesnt understand this concern. He believes Klonopin might disrupt the sleep of people who take it for conditions other than the threshold potential aberration found in CFIDS. He also acknowledged that if you are looking just for drugs to facilitate sleep, Klonopin is certainly not the first one to come to mind, nor should it be used to induce sleep in "ordinary" patients. Its not a sleep drug per se. However, a large part of the sleep disorder of CFIDS is excitatory neurotoxicity and the resulting shift toward seizure. If you treat this condition with Klonopin, then you have treated a large part of the sleep disorder in CFIDS. Most importantly, he said he simply does not see stage 4 sleep disruption in his patients on Klonopin.

    Towards the end of this discussion on Klonopin, Cheney smiled, and remarked, "But suppose Im wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if Im wrong about your need for Klonopin? Im absolutely sure Im right, but whats the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimers Disease. Alzheimers Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now its believed that Klonopin didnt actually stop Alzheimers. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you wont get Alzheimers. Youll die of something else first."

    The last question Cheney addressed concerned the dose: what happens if the dose is too high? He said the only down side was that if you took a little too much (we are not talking overdose here) it would shift you toward coma on the continuum. It would shut your brain down to some degree, and thus impact your ability to function. This is inconvenient, but its not harmful. In fact, it shifts you into the "healing state" on the continuum. You may feel like a zombie, but your brain is protected and your neurons are not getting fried. However, not being able to function isnt an option for most of us, so we need to find the maximum dose that doesnt make us drowsy.

    Dr. Cheney emphasized that Klonopin, Doxepin, and magnesium are very, very good at protecting the brain from cell death due to excess firing. However, they cant stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.

    Though it cant stop the underlying mechanisms causing the injury, Klonopin can protect your brain and keep your neurons from being destroyed. Then, as Cheney put it, "When you come out on the other side of this, youll have more of your brain left."
     
  5. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,497
    Likes:
    1,451
    I have been on Klonopin since 1990. There is no way I could ever go off of the drug. I have tried lowering the dosage but I end up having major problems with withdraw. I have had to realize that the only way I could go off of it would be if it took me forever to do so. It helps me to sleep, but I am wondering what the longterm affect has done or is doing.

    In 2006, due to a hyped up response to Elavil for my fibromyalgia, I was taken off of that med and couldn't sleep. My doctor (a cfs doctor BTW) put me on Zyprexa. Zyprexa is for psychosis and those who are bipolar. I am not bipolar. I was told to take it for sleep. I was worried about this medicine. I would sleep 9 hours straight and wake up and think there is no way I can get out of bed. I became majorly depressed on this medicine. I gained 15 pounds. My mother came over and knocked on my door to try and stir me out of a slumber that I finally went into after months. After 7 months, I went off of it cold. I was told to.

    I almost went nuts. I would say I did go nuts. I had to go and live with someone because I was vomiting, sweating and up all night long. I mean all night, for 3 months. No doctor believed it could be the Zyprexa, but it was all over the internet. This lasted for almost a year. I found all kinds of info on line about Zyprexa and how dangerous of a drug it is. There is a support group in Philadelphia for those who are going off of this drug, that's how awful this drug is. Why did they put me on it?

    I found a great book called, "Your Drug May Be Your Problem." I have found absolutely everything in that book to be right on. It talks about certain drugs, benzos and what they do to the brain long term, how to go off of them and how you may never be the same off of them.

    During my sinus infection, my doctor has prescribed Neurontin and Restoril for lack of sleep. Neurontin makes me have suicidal thoughts. I need sleep but some of these drugs are worse than the actual lack of sleep. I never went and got them filled.

    I stick to Klonopin and Ambien and when things were really bad, I was on Trazadone for a small amount of time, but I gained 23 pounds.

    I agree with Cheney. Magnesium and Klonopin has saved my life at times. Nothing else works the same. That and calcium. Calcium also helps to quiet things down.
     
    ggingues likes this.
  6. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    I'm off klonopin after 16 years. I use melatonin, theanine and 5 htp. Tc .. X
     
  7. Nielk

    Nielk

    Messages:
    5,464
    Likes:
    6,017
    Queens, NY
    How much were you taking? Was it hard to do?
     
  8. runner64

    runner64

    Messages:
    60
    Likes:
    1
    I'm not disputing here, that's not my intention or motive for posting. I'm warning about the side effects that's all.

    Peter Breggin, the Author of "Your Drug May Be your problem", is the "expert witness" used by my attorney in benzo cases regarding this. He gets a lot of wins. He wins proving tolerance and people aren't told that's what it is and people are then kept on the benzo longer. He also uncovered the falsified clinical trials on xanax etc. that pertain to all benzos. On the benzo.org/uk site, you'll find that info. I just like people to know the dangers as these other doctors above, don't know even know what they are.

    Again, I am not disputing anyone or dissuading, I just wanted people to know what they weren't told. That's all. xo :)
     
  9. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Shortly after my diagnosis, an ME/CFS doctor prescribed Tylenol PM (to initiate sleep) and trazodone (to maintain sleep). These have worked exceedingly well for my sleep dysfunction, which was really bad.

    The Tylenol PM was a bit of a surprise. By itself it does nothing for me, so why should it work in combo with the trazodone? My best guess is that the extra bit of pain relief and reduction of histamines at bedtime is just enough to turn down some pain/allergy symptoms that might otherwise keep me awake, while the trazodone does the real work. Just a guess.

    I (and other people, apparently) had a nasty reaction when I got the Pliva brand of trazodone from my local pharmacy instead of the generic I usually get from my mail-order pharmacy(manufacturer: Apotex). I wouldn't take the Pliva generic again for thousands of dollars (if you got into the hundreds of thousands, I might consider it worth the months of misery). However, the generic I take is invaluable to me. My doc tried taking me off trazodone entirely after the bad rxn and putting me on ambien -- completely useless. I'm finally getting decent sleep again now that I'm back on my usual trazodone and starting to feel human again.

    After some of the benzo stories I've heard, I'm glad this combo is working for me.
     
  10. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Um, my memory is sooo bad .. I think it was between .5 - 1.5 mg depending on how severe my symptoms were. I was on it for nocturnal myoclonus (nm).
    That's a type of seizure. I still have nm but theanine works the same and it's a natural supplement.

    Fwiw. I had a two hour seizure in march and was prescribed klonopin. I couldn't function while on it and it was a low dose every few hours. It even made my ataxia return. I stopped it of course.

    I've found that certain foods and drugs cause excitability and avoidng those helps. For me it's caffeine, gluten and hfcs. Not sure if other chemicals would do this since i avoid them and never experimented with these.

    I'm almost certain that a combo of gluten, via cross contamination, and too much coffee caused my two hour seizure. I knew both of these made
    me feel jittery but decided to be stupid instead .. Lol

    It took me 4 months to wean myself. I had to go very very very slowly. My myoclonus came back full force if I tried to go too fast.

    I started weaning myself when I noticed it was making me feel like a zombie during the day. This was 7 months post gf diet. I suspect that gluten triggers my myoclonus. I do all I can to avoid gluten but it's everywhere so I just decided to take theanine every nite and not worry about having myoclonus.

    As long as I'm here .. If I'm wide awake at 10 - 11 pm, after taking 2 1/2 mg melatonin, 100 mg theanine and 100 mg 5 htp, I take more. Up to 9 mg mel, 300 mg theanine, 300 mg 5 htp. This has been working for a few years now. I can't stay at the higher dose and function tho so I look for triggers.


    Tc .. X

    Ps. The cheney article was interesting. He's certainly not a holistic doctor tho. He never talked about finding a cause for this symptom.
    What a waste .. I wonder if he knows more now ..
     
  11. runner64

    runner64

    Messages:
    60
    Likes:
    1
    Hey xchocohic! I luv your name. lol. Theanine helps for sleep? I've never even tried it. I have some. 100-300mg. Really? I should try that.

    Eye yi yi!! Cheney doesn't understand benzos or their mechanism of action. They can actually cause functional brain and cns injury. Wow. It's very misleading for the general public. :(
     
    Ocean likes this.
  12. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    I finally got my 4 panels saliva cortisol done and my curve is almost the opposite of the normal curve. Go figure!
     
  13. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    My sleep is messed up, but it has been worse. I know that wired but can't sleep feeling well.

    Here is what i do now for sleep.

    I think I need calcium, and take my supplement at night.

    Valerian root(I don't take this every night)

    Melatonin

    no EMF's right before bed, but I'm breaking that rule tonight obviously.

    OTher than that, when I do take sleep meds, temazapam seemed to work ok for sleep. Mild to no hangover the next day.

    I'm kind of due for a sleeping pill though, but my stomach is not going to be happy about it.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,401
    Likes:
    4,797
    australia (brisbane)
    Hi runner64,

    No offence taken, as i find treating sleep disturbances in me/cfs interesting as its one of my worst symptoms and sleep meds have been helpful. Im just trying to get my head around some of the theories that have been mentioned with benzos worsening sleep etc. Anything that can help improve our sleep/insomnia is worth looking into and im still interested to see if people can improve their sleep without meds, i dont think its for everyone but still i think everyone would like to sleep drug free. I think there maybe be multiple causes of sleep problems going on in many of us. I think the concept of benzo's damaging gaba receptors is interesting, maybe there are ways of improving these gaba receptors. I know progesterone is a hormone that can improve sleep by increase gaba receptor sensitivity and can be used in men as well as women.

    cheers!!!
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,401
    Likes:
    4,797
    australia (brisbane)
    August59, i think this can be common in alot of us.

    Phosphatidylserine can be helpful with lowering high night time cortisol and pregnenolone for low morning cortisol. Im finding adrenal hormones like pregnenolone and dhea helpful but we need to start really low and increase them really slowly. I think dhea is important to help counteract negative effects of cortisol, but like u have mentioned, as men we have to be careful with estrogen production from dhea??

    cheers!!!
     
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Hi runner .. Thanks. I really have to work at ignoring chocolate calling my name .. Lol

    I need all three supplements for a really good nights sleep. They each work differently. There is a sleep
    supp on the market that combines these for us, but after much expermenting, I need a different quantities.
    I use 1.5 - 2.5 mel, 100 mg theanie, and 100 5htp normally. The 5htp helps with mood.

    Imho, it's a real shame that cheney never tried to come up with a working protocal. He's certainly intelligent, as are all doctors, but they're
    clueless when it comes to functional medicine.

    Hth .. X

    Ps. I'm trying to remember what I did specifically for my insomnia from hell but
    all I can remember is taking 2 benadryl with extra klonopin. I rarely had a really good night's sleep until finding these supplements .. I'm not hungover from these either but was after the others for years.

    Imho, it's really not that difficult to find our triggers. Caffeine, gluten, dairy, hfcs, dyes, chemicals we can't pronounce, etc are suspects.
     
  17. runner64

    runner64

    Messages:
    60
    Likes:
    1
    Hi Heapsreal! Thankyou for not being offened as it wasn't my intention. I don't have the answer either about improving sleep without some of these meds when one has a neurological cause creating the problem. I'm not getting much. One does what they need to and understandably. I don't want to beat a dead horse. If you wanted to validate what I have posted, contact the doctors below as they ALL SPECIFICALLY studied the drug. I'm very educated with these drugs specifically and that's the only reason I posted what I did.

    Unfortunately benzos and z-drugs worsening sleep on and off the drug aren't theories. It's from the way the drug changes the brains function. The mechanism of action I explained on the klonopin, valium thread reply #68. The action of the drug is what gives sleep, and what ultimately takes it away. This drug action, is one of the reason people get bad side effects eventually on it, and coming down. Catch22. And this change is specifically why so many, have a hard time coming off.

    I still think some misunderstood in that, I know people need sleep. I understand by taking specifically benzos and z-drugs, from the aspect of CFS benefits, they help. therefore doctors like Cheney recommend it. All I'm saying, is most of you do not understand the other side of the coin. I'm not disputing the need for sleep. I just warning you guys specifically what THESE pills really do depending on genetics. That's all.

    Progesterone has no influence on GABA receptors. Nothing does. And as the reply on the thread I posted in reply #68, they can come back altered not as effective. They are not going to study something to "fix" when they deny there is a problem.

    The 2 doctors I listed, Dr. Malcolm Lader, Dr. Ashton, are the doctors that studied the drug, and helped people come off. They have been doing this for over 30 years. The research doctor I met at UBC a few weeks ago to discuss my cns injury from it, and ask why is this still going on why are people not told? It's a business $$. He is degreed in Pharmacology, Anesthegiology, and he knows how the drug works. "Mechanisms of Actions" of drugs period are what he does for a living. He's one of top in this field. His group Therapuetics Initiative, studies the actions of drugs and how they work on the brain etc, and prescribing behaviors of the mainstream medical community. He will back up that everything I am explaining to you, is in fact, the truth. Contact him. He'll tell you. He will explain this, just the way I did.
    http://www.apt.ubc.ca/Popups/Dr_James_Wright.htm

    That's why he endorsed this book by Joan Gatsby who is also an activist in the community. We've spoken. The reason it's hard for people to come off the drug is the side effects from how the drug change the brain function. He's the 2nd doc down. Dr. Malcolm Lader the first doctor listed here is who I mentioned above and I've corresponded with him.
    http://www.addictionbyprescription.com/testimonials.html

    Ove Carlsson in Sweden. He won his courtcase regarding benzo side effects and it took 3 years for his cns and brain to heal. And he wrote this book. I've corresponded with Ove in length. He'll tell you, it's the truth.
    http://evoca.info/HemsidaE.html

    Non listed are drug addicts or abused benzos. If you become dependent, this can happen. This is why people slow taper, some have a hard time controlling symptoms/side effects, some have it easier.

    Dr. Peter Breggin that was mentioned here, he wrote "Your Drug May Be Your Problem, will corroborate what I said is in fact, the truth. This is why he is used as "expert witness" in benzos cases, psychiatric drug cases and more. Explaining side effects and why. Read the first quote and what he says about that lawyer. This is the lawyer I found 3 weeks before my statute was up. I would have won in mediation but gathering my info took to long. Email him. He'll tell you I'm telling the truth.
    http://www.naturalpedia.com/Mosher.html

    Geraldine used him due to Ativan side effects and won her case. Geraldine Burns. She's not a drug addict either but unwittingly became dependent. She worked with the Dr. Ashton above who wrote the manual explaining the drug, and symptoms/side effects, reasons why, how to come off. And the z-drugs, Ambien, Lunesta, Sonata, Imovane, are all in Dr. Ashton's manual because they go to the same in the brain, the act just like benzos. Same potential depending on genetics. In this link it says benzodiazipines, dangerous side effects.
    http://www.bcnc.org.uk/geraldine.html

    The doctors I'm listing, specifically work with these drugs and understand it. The doctor like Cheney on this thread along with many others, are not interested in that information. And they are not even taught this, as it's not a requirement to learn this. They are ONLY interested in what can help you sleep with CFS. One side only.

    YES, they help with CFS and "benefit" CFS in this way. I couldn't agree more. I agree. In this people need to sleep, especially with this. But do you know what else they do? This is all I was sharing.

    Google Benzobuddies, you'll see how many have these side effects on, and side effects coming off, and if one posted and asked about these drugs there, you'll find out I'm telling the truth.

    It's like the fluoroquinilone antibiotics I'll use as an example. How many know, they can rupture tendons? And can cause irreversible damage to the central nervous system. Google fluoroquinlone victoms. Many people trying to sue because they weren't told. AND, they're still being prescribed by doctors today. This has been known to happen, for years. This is the exact same pattern happening with benzodiazipines and sleeping pills. (Z-drugs).

    There is no "profit margin" educating the mainstream medical community, or the general pubic and getting the truth out there. I'm just letting you know these side effects and injury are a possibility depending on your genetics and this is why the drug was never intended long term, what you weren't told. You can avoid strong side effects if you SLOW taper IF in the future you decide to come off as you are now dependent physically. That's all. That's why I'm writing my book. This is why I am an activist in the community.

    Dr. Ashton, Dr. Lader, Dr. Reggie Peart, member of Parliament Jim Dobbins, activist John Perrot, Barry Haslam, Stephanie Holiday, Earl of Sandwich who has a family member still healing from the injury, are forerunners in Parliament in the UK right now, still trying to get the mainstream medical community to learn about this in order to tell people the dangers and the bad side effects, and help them come off humanely through slow tapers if they choose too. They are the only country globally addressing it and have been for years. Public Health Minister Ann Milton is one of the first in govt officials on the publics side. I believe it was one of the Kennedy's in the US who tried to bring this forward as J. F. Kennedy was "caught" in this on a benzo. Unwittingly dependent. It's about the $$.
     
  18. runner64

    runner64

    Messages:
    60
    Likes:
    1
    Okay, you take those supplements. Melatonin didn't cut it for me but maybe the 3 together might. Thankyou for your recipe. I appreciate it.

    I could get some pretty big hangovers when I took klonopin too. And benadryl. I still take benadryl sometimes though.

    I don't take anything you listed above that could negatively influence my sleep. My offender is something out of my control neurowise. I can actually feel it and have a real noisy head (tinnitis, whooshing) together stamping it's strong neuro lol. (Chemicals we can't pronounce. You're funny.)
     
  19. Calathea

    Calathea Darkness therapy

    Messages:
    1,098
    Likes:
    564
    Scotland
    I ended up with severe circadian rhythm problems. First I got Delayed Sleep Phase Syndrome (DSPS), then that turned into Non-24 Sleep-Wake Cycle (N24). Plus frequent awakenings, poor sleep quality, lack of deep sleep, the usual.

    Ambien is the one that really frightens me. It caused me to hallucinate, and I was absolutely stoned for the next week. I was getting a home help daily at that point, and every day she'd come in and say, "Now that I see you today, I realise how stoned you were yesterday." Then the next day it would be the same, all week, and I was wobbling all over the place, not safe to make so much as a cup of tea (and the ME was less severe back then, bear in mind). It's not even listed as a hallucinogen on UK leaflets, although it's a well-known side effect.

    I can use temazepam but only very short-term, for a few nights at a time. Now that I know a lot about what helps my sleep, it's a useful tool to have in my kit, but on its own it doesn't do much for long-term problems.

    The main things which have helped are darkness therapy, and to a lesser extent light therapy. I suppose it's "natural", although it's not herbal, it's a way of getting your body to produce its own melatonin. (Melatonin tablets did nothing for me, and I suspect are probably counteracted by blue light exposure in many people.) The effect was immediate and profound. My sleep's still far from perfect, and I still wake up feeling like a dead rat, but the sleep is at least at the right times now and noticeably improved in quality. I started off with bright light therapy, which brought the N24 back to DSPS, and then a few years later discovered darkness therapy, which controls the DSPS and generally improves the quality of my sleep to a certain extent. It's approximately equivalent to a good sleeping tablet for me.

    Unfortunately, when I started on gabapentin a few months ago, it seems to have done something odd to my sleep. I slept better than usual when I was on it, more deep sleep would be my guess, but when I started tapering off it my sleep quality deteriorated, and markedly so when I finally stopped it. That was about three or four weeks ago, and my sleep's still not back to usual, to my dismay. Admittedly, I just had a hellish weekend due to three days on metachlopramide, and my body is probably in a state of not knowing what just hit it. I'm using the odd half-tablet of temazepam (overreacting to meds at the moment too!), but I'm being very cautious after the last few weeks of misery.

    I've written about the whole light therapy and darkness therapy business here, by the way. I really should do a proper post on it. Darkness therapy is probably not what you think, it involves avoiding blue light specifically (since that is what suppresses melatonin), which translates as wearing orange glasses for three hours before bed and not letting myself see any white light if I get up during the night.
     
  20. runner64

    runner64

    Messages:
    60
    Likes:
    1
    I just want to add, google any one of those names in the last paragraph of reply#17 and add "and benzodiazipines" behind the name. You will see how they are involved and promoting awareness.

    Here is what the Earl of Sandwich (who's family member is still recovering from physical side effects) was asking Parliament June 17th, 2010. Just like I asked Dr. James Wright "How come this is happening and why aren't doctors telling people this can happen?" He referrences the syndrome. If you google benzodiazipine withdrawal syndrome, the "syndrome" is the side effects that can take 6 - 18 months and beyond to heal rendering one non functional in the process.

    He asks, "Why information sheets accompanying prescribed benzodiazepines do not carry warnings of potential withdrawal syndromes associated with its use. HL591
    http://www.appgita.com/index.php/2010/06/parliamentary-questions-the-earl-of-sandwich/

    http://en.wikipedia.org/wiki/Benzodiazepine
    On this link in the History area, they talk about the class action suit in the 80's with doctors and patients against the drug company. (From the paragraph below) - the court case against the drug manufacturers never reached a verdict; legal aid had been withdrawn and there were allegations that the consultant psychiatrists, the expert witnesses, had a conflict of interest. This litigation led to changes in the British law, making class action law suits more difficult.

    Look why there were suing - 117 general practitioners and 50 health authorities were sued by patients to recover damages for the harmful effects of dependence and withdrawal

    >>The new group of drugs was initially greeted with optimism by the medical profession, but gradually concerns arose; in particular, the risk of dependence became evident in the 1980s. Benzodiazepines have a unique history in that they were responsible for the largest-ever class-action lawsuit against drug manufacturers in the United Kingdom, involving 14,000 patients and 1,800 law firms that alleged the manufacturers knew of the dependence potential but intentionally withheld this information from doctors. At the same time, 117 general practitioners and 50 health authorities were sued by patients to recover damages for the harmful effects of dependence and withdrawal. This led some doctors to require a signed consent form from their patients and to recommend that all patients be adequately warned of the risks of dependence and withdrawal before starting treatment with benzodiazepines.[128] The court case against the drug manufacturers never reached a verdict; legal aid had been withdrawn and there were allegations that the consultant psychiatrists, the expert witnesses, had a conflict of interest. This litigation led to changes in the British law, making class action law suits more difficult.<<

    This is why I posted what I did. As you can see, drug companies and a select few doctors know about these side effects and this has been going on a long time. And many like myself, were not told about side effects or dependency period, never mind dependency taking it as prescribed.

    I hope this information helps people.
     

See more popular forum discussions.

Share This Page