Doc says "no" to Klonopin

Discussion in 'Fibromyalgia Main Forum' started by karen728, Sep 10, 2003.

  1. karen728

    karen728 New Member

    I went to Dr today and asked for Klonopin. She said no because of it's addicting affect, especially since I will be taking it for sleep. I don't understand the contradiction over this drug. Is it addicting or isn't it? I borrowed one from a friend last night and I slept great. My racing brain finally stopped. I'm really upset because I thought there was an end in sight to my insomnia.

    Can Valerian help instead?

    Signed,

    Depressed again

  2. ksp56

    ksp56 Member

    Karen,

    I've taken klonapin for several years to help stop restless legs AND to help with sleep. Many here are on klonapin. Have you thought about checking out another doctor who might be more empathetic to your situation?

    Valerian is heaven sent for me. Along with 2 tablets combining magnesium and calcium. I also take it during the day when I have racing mind or am very jittery. There is no known side effect of valerian, at least in the books I've looked through. You can get it any drug store or Walmart type stores.

    Hope this helps you some!

    Hugs and wishes for sleep......

    Kim
  3. LITEFLAMES

    LITEFLAMES New Member

    Sorry it didnt work out,
    You could alway's go to another Dr.
    I wrote you yesterday,, and said it is additive, but that my sponser had worred about me ,Well what I didnt say , was when she said that I Thought {Right} But it got me thinking ,
    And I told you I Take it for Anzity,,,Well Hear I did relise , Something in my Brain , About 2:30 Would say ,THE KIDS Will be home at 3 ,So I'd take one,,Well In Relising this , I wouldnt take it , I did eventuailly have my dr down the dose, But Then it didnt work at All,So I went back to my 1 mg's, But I dont take it 3 times a day, 1 in the day if I Ned ut , And one about 2 hrs before bed,,
    Why is you'r Dr so conserned about it being addtive , Have you had a problim, And I Asked you yesterday, What type of Dr is this??? GOOD LUCK
    Thanks cindy
  4. tansy

    tansy New Member

    GABA I still can't beleive how well this works. I take I 750mg am and again early afternoon. It's calming without the side effects of tranquillisers etc. In the evening I take 5HTP and valerian before bed. Now when effects of sleep med kick in I go to sleep and stay asleep for at least 5 hours. Doesn't happen every night but all sleep seemed elusive until I started using these.

    In the UK we get very little in the way of treatments so far most of us it's really is a matter of helping ourselves.

    Cheers

    Tansy
    [This Message was Edited on 09/10/2003]
  5. PaulMark

    PaulMark New Member

    MY worry is more about Klonopin in regard to does it go thru our impaired 450 cytocrome system (ie dR.Cheney says the liver is not diesased but centrally strained take l mg. HS (bedtime)

    I do know Neur. goes thru the renal NOT THE 450 cytocrome

    I often wonder why cheney didn't prescribed GABA instead of neurontin but my guess is gabba does work on neurpathic or sensory distorted pain or he would have given me gabba as he is by no means strictly mainstream dr.

    I"ve delved into alt. medicine a lot when i lst got sick i was able to drive to nash. for ancunpunture, hydrrogenpyroide IV, colonics I was not as debiliated and didn't have all the digestive problems i have now at 42 lbs. underwght.

    I also went to an ayurvedic institute thru their pancharma cleansing program for 2 wks. 2.5 yrs. ago and got sicker

    TO the point

    The holistic view is all meds are somewhat toxic to the body, so i've backed off neurontin to only 200 HS and 200 daily probably not enough to help me but i figure the bizzare type of immune disregulation pain in my mouth tongue throat bronchials (like sandpapery dry dry fire ant burning biting burning tingling ) with extreme thirst is caused by body imbalances only GOD knows, i'll just suffer

    anyways if i go over 500 mg. of neur. i get headaches

    I WOULDN'T WITH OUR ILLNESS WORRY ABOUT ADDICTION that in my opoinion is the least of our worries, i worry more about the any toxic residues left lingering for yrs. in our bodies as the holistics say,

    for what it's worth Paul mark

  6. Plantscaper

    Plantscaper New Member

    My doc initially said NO, but after showing her the article on our "slight seizure state" as described in Dr. Cheney's (which is in the library here), she said YES..Hope you can convince your doc that it would be OK to take, given our problems..I don't think, actually, that it is as addictive as other commonly prescribed drugs..

    Plantscaper
  7. DipseyNoodle

    DipseyNoodle New Member

    Today my dr. diagnosed me with FM. Finally someone listened. I have been on numerous medicines but NOTHING has worked. Today he started me on Neurontin (300 mg, 4x day). I hope this helps with sleep. Will it help with the pain? I'm having constant pain in neck, back, shoulder and arms. He only has me on this and seeing him again next Friday.

    Since I'm knew to this diagnosis; I'm assuming I'm in a "flare up" right now. Will this go away and then maybe come back.

    I have been off work for 2 1/2 months and my husband is getting anxious for my return (money issues). We are new to this and I told him I have been reading, reading and reading some more and I may not be able to go back. I'm afraid if I go back feeling okay and get bad again and then will mess up the long term disability that I'm on now.

    So many questions. My doctor told me of a local support group that will meet next week, I think I'll go see what I can find out about this awful "disease".

    Thanks for letting me share/vent. From reading the postings, I see that there is a lot of support here. More than I seem to be getting from family and friends because no one seems to know about this.

    Again thanks,
    Melissa
  8. FranWi

    FranWi New Member

    I too am amazed at how well the Klonopin works. I take the clonazepam version, just prescribed by a sleep specialist two weeks ago after verifying I have micro-awakenings that keep my brain running all night. Now when I wake after taking the klonopin - I can't even remember my dreams and that is such a breakthrough for me. I was always plagued by my sleeping thoughts, even the next day when I'd recall something from my dreaming, and it just turns your brain and concentration to mush! So I definitely hope you can get on klonopin, or find another dose to see how it goes again. I definitely don't feel any addictive qualities to the drug, and have to remind myself to take it at night.

    But it doesn't put me to sleep. It is good at erasing the racing brain, though. I think you need to find a doctor who has a little more knowledge about the treatments that WORK for us!

    :)

    Fran
  9. Betsy2

    Betsy2 New Member

    My experience with Valerian is that it works well except that the next day I felt a terrible fog. That is when I told my physician she put me on Klonopin. Then, I read on the boards here that Klonopin is not good when you have sleep apnea (I have sleep apnea) because of the way it affects the brain while sleeping so she changed me to Sinemet (primarily used for Parkinson's). When I moved to SC and had to find a new physician he switched me back to Klonopin because he had never heard of any evidence that Klonopin affecting the brain while sleeping. I guess different doctors have different opinions but now I am skeptical. Is Klonopin the drug of choice for me?
  10. tandy

    tandy New Member

    to write a script for klonopin~ Same here.I asked my rheumy about it and she said 'I would only use that drug as a last resort',"maybe for my most serious cases of fibro'. Needless to say i'm bummed too....
    I've heard of many on this board that klonopin has helped alot!I wish I had an understanding dr., most of them are clueless as to our pain. I think the valerian might help.
    I bought it,tried it and it helped some. I could'nt get past the smell of that stuff tho!!(thats why i don't take valerian~) pee-uuuuuuu!!! Take care :)
  11. GooGooGirl

    GooGooGirl New Member

    Try going to a Psychiatrist. That's what I did. I told him I was having a lot of anxiety about my health problems and that I wasn't sleeping at all. He gave me an RX for Klonopin and then I went back to my regular MD and he just refills it for me now without me having to go back to the Psychiatrist. You might have to follow up with the Psychiatrist for your refills but it's worth a shot anyway. Good luck.
  12. Betsy2

    Betsy2 New Member

    I saw a psychiatrist for a few years on the suggestion of my therapist. They thought that my medications should be monitored and it helped me so much. He even tried different anti-depressants in hopes that another anti-depressant would help me more efficiently.
  13. Judi

    Judi New Member

    Karen, Hi my name is Judi, I haven`t been on here in a while. I went out of state to see the little boy we had for 3 years as a foster baby,we had him over 3 years & we were there for his 6th birthday. Anyway,
    Do you have a Rheumy as a doctor? I didn`t read all of the things that was written to you either, I am having a flare & it hurts the tips of my fingers, so I don`t stay long.
    My Rheumy is so good. There are a lot of med`s that we take if we really get help that is addictive, but the way I understand it as long as we take it as we are suppost to, the med goes to the pain & it is used there. we were even told that when my mother in law was dying,
    I think that most doctors don`t understand the DD, & insurance is my problem, they think they are qualified to tell the doctors what I can take & not take.
    Hang in there, go find you a Rheumy & God will carry you through these long ole valleys.
    God Bless You
    Judi
  14. Mikie

    Mikie Moderator

    He or she evidently does not understand the difference between physical dependence and psychological addiction. I'm not surprised; a lot of docs are not educated in this area. I've been on the same dose of Klonopin for a couple of years now and even miss a dose at night now and then and have had no problems whatsoever. Dr. Cheney debunks the addiction issue in this article.

    BTW, if you go to this article in the library, it will give you a printer-friendly page to print out more easily. Click on the printer-friendly icon.

    Love, Mikie

    ****************************

    Dr. Paul Cheney Discusses the Benefits of Klonopin
    by Carol Sieverling
    ImmuneSupport.com

    10-12-2001


    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."









  15. karen728

    karen728 New Member

    I have another appointment with my Dr. in 3 weeks to discuss it again. I plan on bringing Dr. Cheney's report. In the meantime she gave me Lexapro. I haven't filled the script yet. For those that might read this again, do any of you feel addicted to Klonopin?

    Thanks for all your help.

    kc
  16. nygirl

    nygirl New Member

    My doctor put me on Atavin (supposed to be just like Klonopin) because I've had a total CFS relapse. It's been two days and the effect is dramatic. I feel like myself - no physical pain. I'm happy, normal, like I was before CFS. IN TWO DAYS! I know that people have mentioned the addictive effects. I'm not sure how long he'll keep me on it but I know he'd prefer that to the misery of my other condition. As well, my sense is that as long as it's well monitored, many doctors will allow you to stay on it for extended periods of time.
    Valerian's not even close...
  17. Mikie

    Mikie Moderator

    As mentioned above, I have even skipped my nightime dose on occasion with no ill effects. I am still taking the same dose as when I started. I do not use the Klonopin for any kind of feeling "high" or for other reasons. I take it at night to sleep and I slip 1/4 of a tablet under my tongue during the day when I suffer racing brain, anxiety, or sensory overload. This method of delivery is approved by both my docs and my pharacist.

    Love, Mikie