clonazepam-- anyone on this ?

Discussion in 'Fibromyalgia Main Forum' started by blkkat, Jan 17, 2006.

  1. blkkat

    blkkat New Member

    hi !! real fast its hard to sit here. to the point, i havent slept in years and about a week ago i was about to jump off a cliff! (( not really but felt like it )) anyway DR put me on clonazepam and said to take 1 or 2 pills at night, took 1 didnt help, took 2 (( BINGO )) i slept all night i dont wake till morn but first 3 morns i had a hang over but 4th morn and so far i'm up w/the birds & awake and my pain is down from a (10 plus and pain from hell!!!!) to a 8.5 or so. what made me go to the DR who wasnt in of course so saw a PA, my reg tingling turned into RLS?????? BUGS CRAWLING all over in my legs!!!!! didnt sleep but a few HRS in 2weeks. so thought id share my results and wondering anyone else on this DRUG? oh i'm on nuerontin also have been for over a year. HUGS! MONA
  2. MamaR

    MamaR New Member

    Yes....this medication was a life saver for me too. It was given to me for anxiety attacks and sleep. It helps us stay in stage of sleep that we need to restore.

    I only take it at bedtime now....sometimes I can even skip a night or so. I hardly ever have anxiety attacks anymore....unless SEVERLY stressed!
    My doc said that it is a good med for fibro sleep problems.

    What is the nuerontin taken for?

  3. HagerTX

    HagerTX New Member

    I took varying amounts of Klonopin (Clonazepam) from 2003-2005. They work wonderfully but may very well backfire if they are taken regularly for 3-4 months and beyond. That's great it's working well so far but honestly I'd try to find a non-benzodizepine (perhaps a tricyclic antidepressant) or even Remeron for sleep and/or anxiety.

    Klonopin has a pretty long half life, perhaps not as long as Valium, but certainly longer than Xanax or Ativan. Ativan may be better if you are needing some relaxing sleep--the hangover is likely to be much less. Either way, you may want to check out the following links:
  4. Sandyz

    Sandyz New Member

    I`ve been on it for about 6 years. It really helps me with sleep and anxiety. It also helps settle our sensory overload down. How many mgs do you take? I have been on 1 mg at bedtime for most of that time. I also take one half one during the day. I have never had to up my dosage above that in all that time. I think it is a very good med for us from what I have heard from Fm specialists.

  5. redtex

    redtex New Member

    since both of these drugs work on the gaba receptors i wonder about taking them together. how many others take these two at the same time? i am still looking for a doctor that will prescribe klonopin to me. also does anyone see a difference between the name brand and the generic? does dr. cheney prescribe them together? thanks for sharing your experiences. redtex
  6. blkkat

    blkkat New Member

    hi! thanks for your posts! someone asked what dose i take i take 1mg at bed. another asked why both clonazepam and neurontin, i think because i can only take 400mg a day of the neurontin due to i fog out soooo bad i cant even think!!! i asked the pharmacist that same concern, he said its fine its just an extra kick to help with restless leg. and with sleep, neurontin doesnt make me tired. also i take neurontin from the beginning when this all started because my legs would tingle and buzz and go numb but not like RLS. i saw a P.A DOC the one who gave me this new drug (clonazaepam) but i'm going to my reg DR tomorrow so i'm going to ask about all this and will let you all know what she says. take care! if i didnt have all of you to talk to i wouldnt have anyone- really!!! HUGS!! MONA-- oh did you also ask what other meds i am on? i also take 20mg oxycodone a day and now that ive started taking clonazepam i dont need my muscle relax which is nice cause they made me sick. plus didnt really work anyways! nite nite!!!!
  7. Sandyz

    Sandyz New Member

    I was on both clonazapam and neurontin for about a year. Both doctors I was seeing at the time said they were ok taken together.
  8. blkkat

    blkkat New Member

    thanks, thats good to know!!! HUGS!! MONA
    P.S you were able to get off both???? or did i misunderstand??? [This Message was Edited on 01/17/2006]
  9. peachbunnee

    peachbunnee New Member

    Helps me with sleep and anxiety.

    I usually only take it at night.

    Hope this helps....

    peach :)
  10. Mikie

    Mikie Moderator

    I take the generic and it works well for me but Cheney likes the brand name. I've been on it for more than four years and it has given me my life back. Recently, I weaned down to half the dose I now take in order not to build a tolerance to it. I didn't want to have to increase my dose. I've basically been on the same dose at bedtime, 1 mg., all this time except that I did start out slowly and build up. I quarter the little pills and put a piece under my tongue during the daytime if I find I'm suffering anxiety or sensory overload.

    Love, Mikie


    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( 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.


    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.


    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."


    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."

  11. Mikie

    Mikie Moderator

  12. Kacjac

    Kacjac New Member

    I've been sleeping so much better!
    RLS is gone!
    Sensory Overload much better!
    Couldn't take Nuerontin, it made me severly dizzy!
    Glad to hear it's helping!
    Hugz, Karen