Discussion in 'Fibromyalgia Main Forum' started by littleleafhopper, Aug 11, 2006.
Have any of you been on klonopin for sleep? Did it help or make things worse?
.5mg at night before bed, or if I am really wound up or stressed I have my doc's permission to take one whole mg.
It has been the only medicine that has helped me long term with my sleep issues.
By the way welcome to the board! I saw your other post.
[This Message was Edited on 08/11/2006]
Well, it helped me fall asleep, but the next day, I am very lethargic and drag myself around
Started recently.. i'm not sure of its effectiveness yet, but i haven't experienced any negative side effects like some other people are mentioning, and i know several people on here have said its been helpful to them so.. I'm going to be trying it for a few months and see if it makes a difference. I am hoping it will help with sleep quality.
I have been taking .25 mg (that's 1/4th of a milligram) at bedtime for the past two weeks, and my sleep has improved greatly. I don't have any hangover symptoms the next day.
As with any medication, though, please remember that everyone's body reacts differently. The best way to find out if this would work for you would be to try it, starting at a low dose.
Fortunately, Klonopin's generic form, which is clonazepam, is very inexpensive. I get 30 .5 mg pills that I cut in half for only about $8, and I am uninsured, just get a little discount from a prescription plan from AARP.
Perhaps your doctor would give you samples to try at first, to see how this medication would work for you.
Good luck. Sleep is so important to us as we deal with our illness.
It allows me to get restful sleep and wake up alert and refreshed.
I have weaned down a bit several times, but the seizure activity returns, so I figure that I still need it. I seldom need it for sensory overload during the day, so I figure that at some point, my healing will allow me to get off of it altogether.
The downside to Klonopin is that if you want to go off of it, it can take months to wean down. I weighed the potential side effects versus the potential benefits and decided that if I didn't get some sleep and get rid of the anxiety/panic attacks and sensory overload, life was not worth living. The Klonopin has give me back some of my life.
I started it for Restless legs syndrome.
For me it was a miracle pill...
but the drawback is that my body will go thru withdrawl w/out it...
But it is the only thing that helps for the RLS for me... I take .5 mg at night. or 1 mg.
It has restored my sleep as well.
I just hate the fact of being dependant on something.
but like my doctor said, "are diabetics dependant on insulin?" "yes." but they need it to live, same as us, we do need things to function to live.
the non viral infections I have need to be treated as well.
I use noni extract, samento (treating borreliosis and other infections), also vitamin D that rebalances the immune response, natural anti-inflammatories, antimicrobials, and agents to control fibrin build up.
Various mushroom extracts and beta glucan act as immune modulators. In Chinese herbal medicine the Agaricus mushroom is now known to be the most potent immune modulator. Reishi spores are 7 times more potent as an immune system modulator than Reishi mushroom extract.
Astragalus enhances macrophage activity and reduces the activity of suppressor T-cells, however, it is not recommended for the later stages of lyme disease when stepania can be used instead.
Ginger, Ligustrum/Chinese Ligustrum/privet fruit, lovage root, Japanese knotweed, bioactive whey proteins, colostrum, lactoferrin, transfer factors, and aswagandha can act as immune modulators. There are other options as well. I tend to choose those which also help with the pathogens I’m aiming to treat, or those that help with other specific issues like various forms of inflammation and coagulation; turmeric for example helps with both of these.
Have you read Ken Lassesen’s web site on CFIDS? He has devised a for what it’s worth (FWIW) protocol for CFIDS which is worth considering. Many PWCs are doing well through either following Ken’s recommendations or opting for the individual agents they feel will help them most; he keeps it updated based on patient feedback.
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I just started taking Klonopin last night to help me sleep.
My doc Rx'd me 1 mg, but I can take 2 mg if I need.
So, I took the 1 mg tab and fell asleep but was wide awake tossing & turning at 2:30am. I took another 1 mg when I just could NOT go back to sleep!
So, I am going to try again tonight with 1 mg. I sure hope it helps. I'll let you know...
I've been taking the generic version, Clonazepam, for over a year now. I take 3mg. at night for sleep and restless leg syndrome.
I've also recently started using sublingual liquid Melatonin and that really helps me get to sleep, as I've acclimated to the Clonazepam dosage.
I was having trouble staying asleep and had tried other things that just weren't helping me get the rest I needed. I am taking 0.5 or is it .05...I forgot. Anyway, I slept so well, but had a hangover feeling the next morning. I cut the pill in half and I couldn't sleep so I went back to the full dose. After one week I can say that I do feel so much better after getting a full nights sleep. I still have the hangover effect, but I get up immediately and start my day and before I know it, I'm feeling fine and actually have some energy. I still get tired and sleepy though by early afternoon. That was happening before too.
We do need adequate sleep if we are to function they best that we possibly can, so I hope all of you that need "help" to get to sleep and stay asleep work with your doctors to find what works best for you.
Have a good wkend.
i have a question also. i take .5 mg. but i have brain fog right now how much is that compared to 1 mg.? most of the time it works but i would like to take more on those nights that it doesn't work. thanks for the info.
.5mg = half of 1mg
thank you so much. i thought it was but with my brain lately i needed a second opion. thanks again.
I took 2mg am, 2mg noon, 2mg at bed for about 7 years and now I'm down ro 1mg am, 1mg noon, 2mg at bedtime I can't imagine going any further off of it but working on it. I also take sinement for restless legs, trazadone for sleep(use to take amitriptilyn for sleep until I went onto Cymbalta) I think the medications all make me groogy in the morning as getting out of bed by 2pm is a challenge. I suppose if I was taking a real small dose like you've mentioned it wouldn't be such an issue. A
Hi, you mentioned muscle spasms. My husband has been on klonopin for a while to help him sleep. We have been through the whole sleep study bit. He even has oxygen at night. He jerks and jumps around so much in his sleep. I sometimes have to sleep on the sofa. He is exhaused during the day. What causes your spasms? Does the klonopin control them? Does it make you sleep during the day?
and if id don't i feel the migraine ect,,,i wrote a post about it tonight...
You might want to check out Restoril. I take 15 mg a night for sleep, sometimes 7.5 mg. It is in the same drug family as Klonopin but according to the drug information I read, it has less incidence of tolerance.
I don't want to become tolerant, so I don't take it exclusively. About every week or so, I rotate to Ambien 10 mg.
Along with my precription sleep med, I add the OTC sleep aid which is the same drug as Benadryl (an antihistamine).
It works very well. I like Restoril because it helps sleep, also greatly diminishes my anxiety the next day. For some reason I developed anxiety months ago. (It could be menopause).
I have also tried Klonopin but like Restoril best.
I have been on it for years. I take three mg. a day.
It helps me relax, takes care of my seizures (along with another med), and holds me through until I have to take bedtime sleep meds.
Taking 0.05 mg at night. Prescribed for getting-to-sleep difficulties and yes it helped.
The better it works. We do not take Klonopin as a sedative. We take it to stop the seizure activity which prohibits a person from entering a slight state of coma, which is what sleep is. Other symptoms of the slight seizure state, which is common in people with our illnesses, include RLS, anxiety/panic attacks, tinnitus, muscle spasms, and sensory overload.
If a person needs a sedative, Klonopin is not the drug of choice but that is not our situation in most cases. Dr. Cheney has written about this and I will go get his article from our library.
OK, here it is:
Dr. Paul Cheney Discusses the Benefits of Klonopin
by Carol Sieverling
Editor’s 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 Clinic’s 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." It’s as if our brain’s "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 person’s 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 isn’t addressed.
How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheney’s 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, you’ll experience greater clarity and think better. If the daytime dose is too high, you’ll 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 can’t 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 aren’t exactly identical to the original products, and with most drugs the slight variations don’t 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. It’s true that it can’t 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. It’s 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. It’s like a thyroid patient stopping their thyroid medication. Dr. Cheney warned, "All hell breaks loose". However, it’s not because the drug is addicting, and it’s 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. That’s the havoc we hear about that is mistakenly called withdrawal."
MYTH NUMBER THREE: KLONOPIN DISRUPTS STAGE 4 SLEEP.
Dr. Cheney said that he honestly doesn’t 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. It’s 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 I’m wrong about the brain injury and the threshold potential aberration and the shift toward seizure? What if I’m wrong about your need for Klonopin? I’m absolutely sure I’m right, but what’s the worst case scenario? Do you know what long-term studies on Klonopin have shown? Reduced incidence of Alzheimer’s Disease. Alzheimer’s Disease is a complicated and convoluted way of knocking out your neurons, and Klonopin protects your neurons. Now it’s believed that Klonopin didn’t actually stop Alzheimer’s. It just delayed its onset so long that everyone died of something else before they ever got it - which is to say you won’t get Alzheimer’s. You’ll 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 it’s 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 isn’t an option for most of us, so we need to find the maximum dose that doesn’t 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 can’t stop the underlying mechanisms of CFIDS that are injuring the brain in the first place.
Though it can’t 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, you’ll have more of your brain left."
[This Message was Edited on 08/12/2006]
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