Weaning Down On Klonopin Update

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Sep 23, 2008.

  1. Mikie

    Mikie Moderator

    Hi, y'all. Just thought I'd update everyone on my first month of weaning down. Instead of getting 1 mg. tablets (one at bedtime), I got two .5 mg. tablets. That allows me to cut one of the tablets and only take 3/4 of the second tablet. This is a 12 1/2 percent decrease.

    The first few days, I noticed that sounds, smells and lights were more noticible but not something I couldn't handle. I didn't sleep as well the first week either and was a bit tired.

    Now, I am functioning fine at this dose and have even noticed that my mind is a bit sharper in some ways. I still have some times of cognitive dysfunction when I am sick or run down, but overall, I think I am more mentally alert. I knew that the Klonopin had made me feel a bit flat emotionally but I never noticed that I was a bit less alert.

    I plan to stay at this dose another month before decreasing another 12 1/2 percent, or 1 1/2 tablets at bedtime. The last time I got to 75 percent of the regular dose, I couldn't deal with the jumpiness I experienced. I am hoping that Dr. Cheney is right and that since there has been some healing, it will be easier now to wean completely off the Klonopin.

    I am prepared to continue to take the Klonopin if I can't function well without it. I could never go back to the overwhelming sensory overload that I had before the Klonopin stopped it. Also, if I can't get quality sleep without Klonopin, it would seem the prudent thing to do to continue it and try to wean down again later when there is more healing.

    My specialist has told me that I have made more progress than any of his other patients. I think the Klonopin has been a very important factor in my healing but there have been a lot of treatments which have made such a big difference for me. It is my hope that the progress will enable me to eventually wean completely off the Klonopin.

    The last time I tried to wean down, I went a little faster. This time, I am going to take it very, very slowly over many months.

    Love, Mikie
  2. kellyann

    kellyann New Member

    Hi Mikie,
    I was just wondering, if the klonopin helps you, then why do you want off of it so bad? I take it to help me sleep on occasion. And for panic attacks.

  3. jenbooks13

    jenbooks13 New Member

    Hi, they do help lyme/ME/CFIDS symptoms, but longterm you develop tolerance, they change the brain's receptors, and they even may even make you more vulnerable to infection, cancer etc.

    I think whether you can wean quickly depends on how active your infections are, and your own genetic vulnerability to addiction to these drugs.

    I have been titrating off 30 mg of temazepam for 2 years. I'm down to about 7.8 milligrams. I have to go down by 0.2 milligrams at a time. That's right. That's how sensitive I am.

    I have a friend who went off 2 mg of klonipin in a few weeks.

    Its all relative.

    Its good to get off them unless really needed, or to use them intermittently.
  4. Mikie

    Mikie Moderator

    Jam, hi, I have been to the benzo website and I did see how slowly they recommend weaning. I will try doing another 12.5 percent reduction in another month but if I have problems, I'll go back to where I am now and try finding an area in between 12.5 and 25 percent. The tablets do lend themselves well to "shaving," but it is a bit difficult to control the dose that way. Even quartering pills can leave some pieces larger than others.

    I think the idea behind Cheney's logic is that as we heal, the slight state of seizure improves and we do not require the Klonopin. Of course, I believe that living with our neurons misfiring and overfiring is much more dangerous than taking a benzo. I did a lot of weighing the pros and cons before deciding whether to try the Klonopin. Yes, GABA may be helpful and if I have problems, I will look into it. Thanks for your kind encouragement.

    Kellyann, I've been on Klonopin for seven years. While I have stayed at the same dose, I hate being on something that could cause seizures if I had to go off of it rapidly. It has been a God send to me in helping me to get quality sleep and with sensory overload. Thing is that I've experienced quite a bit of healing and I'm hoping that the seizure state has improved. If it has, it makes no sense to continue taking what I consider a "heavy hitter" drug. I'm glad it helps you.

    Jen, I have not developed tolerance in terms of needing to take higher and higher doses to achieve the same results. There are many who have been on the same dose for years. What Klonopin does cause is physical dependence and withdrawal symptoms. These are not to be confused with psychological addiction. Even when people mean physical addiction, the word "addiction" has negative connotations. Physical dependence better describes my relationship with Klonopin. I do not get high from it and I do not display drug-seeking behavior, both of which describe psychological addiction. If I were psychologically addicted, I wouldn't be wanting to wean off of it. Because of physical dependence, I have to wean down slowly so that my brain has time to get used to the drug's withdrawal.

    There have been many discussions here regarding physical dependence versus psychological addiction, some of them quite heated. There will always be those who believe that if withdrawal causes symptoms, one is psychologically addicted instead of being physically dependent. The pain management organization has an excellent article explaining the difference. Still, those who insist people on these drugs are addicts cling to their beliefs. I do not feel it is helpful for the professionals to refer to those on controlled substances as addicts. One can become psychologically addicted to sex, shopping, chocolate, etc. It is possible to become psychologically addicted to controlled drugs, but those who take them for chronic conditions usually do not become psychologically addicted, just physically dependent. Good luck to you in your withdrawal. Please keep us updated.

    Thanks to you all for your interest and support.

    Love, Mikie
    [This Message was Edited on 09/23/2008]
  5. PVLady

    PVLady New Member

    I am glad you are having success with the tapering. You are right, take it slow - just one day at a time.

    Good luck
  6. mariee

    mariee Member

    Hi Mikie,
    I am not familiar w. Klonopin, but I do use Lorazapam.
    My doc suggested I use water and titrate down this way....
    I am on .5 mg every night...so he suggested 10 tbsp. of water, dissolve the 1/2 tab....take 1/2 tablespoon out and drink the rest..so there is no shaving and guessing on dosing.
    One thing the benzo.org website recommends is the lower the dose, the slower the taper.
    I successfully tapered down fr. 2 mg. lorazapam to 1/2 mg.
    about a year ago....very little side effects.
    The reason for coming off Lorazapam was the sleepiness and memory impairment...both are better...
    Will start tapering again soon...

    Love following your success here over the years!
  7. Mikie

    Mikie Moderator

    I really appreciate your good wishes and help. I kinda figured that the lower the dose, the more difficult it will become. I will likely really slow down when I get closer to .5 mgs.

    Thanks again.

    Love, Mikie
  8. Missizzy

    Missizzy New Member

    Hi Mikie--I've been reading your post with great interest and would welcome some advice from you. Because I'm in the fourth week of a "remission" and feeling so good, I've begun thinking about cutting back on the Klonopin. I've been so active, I'm actually physically tired at night and thinking that might be enough to cause me to sleep. Just like you, the sensory overload and jumpiness is what drove me to Klonopin in the first place. It has been a godsend.

    I was wondering how long you've been feeling better. Did you have a sudden remission like mine or did you gradually get stronger due to a certain protocol? I have no problem staying on the Klonopin for as long as needed but don't want to take a drug my body doesn't need. I figure that I can always go back on it if my remission ends (oh, please no!!).

    I take 1.125 mgs at bedtime and the occasional quarter pill during the day. I figure that if I plan to be off of it in one year, that would be slow enough. I take no other meds or supplements. My biggest concern is that while I am very strong and energetic in my own home, when I go out in public, where there are new sounds and sensory input, I still experience tremors and slurred speech. The damage to my mind must be permanent as I still have residual effects of the four years of this DD but I am SO much better.

    Any advice? It's wonderful to hear that other people are healing and re-entering LIFE!!


  9. kellyann

    kellyann New Member

    I didn't realize klonopin could cause seizures, but I suppose most drugs like that can. I don't use it everyday, but I have found myself using it more often lately. It helps calm my nerves, and helps with sleep. I think it does help some with pain too. And I seem to have bottles of the stuff, I'd get it refilled and not take it, now I have tons of it. You know it costs less than $5.00 too. When the rest of my meds cost so very much, that is a welcome break. I wish I knew of a very inexpensive antidpressant to add to my monthly dose of effexor. My meds cost me nearly $900.00 per month because I go to a fibro and fatigue center and my insurance will not cover the meds precribed from there.

    Well good Luck Mikie, I am sure you can cut down with no trouble! I am praying for you!

    Remember! Jesus loves you!

  10. Mikie

    Mikie Moderator

    MissIzzy, Wow! A remission! I'm soooo happy for you. If it were me, I'd discuss it with your doc. I think that's always a good idea when trying something new or trying to wean off, or stop taking, a med. I hope the remission is permanent. My healing has been agonizingly slow over a seven-year period and I'm not well--yet. The healing continues, though, so I expect I'll continue to improve. Those who have gotten well say the cognitive problems went away as well as problems with memeory. I hope this is true for all of us. Don't give up on it. My regimen was very comprehensive and the Klonopin was just one part of it, but a very important part. It allowed me to finally get good sleep. When I was so bad, I would place 1/4 of a .5 mg. tablet under my tongue if I encountered sensory overload during the day. Loud sounds, smells and harsh lighting would set me off. Also, movement bothered me. In traffic, if there were a lot of cars switching lanes, it would drive me nuts. Best of luck. Keep us updated on your progress.

    Jen, actually, physical dependence and psychological addiction are completely different things but if they are the same to you, we'll just have to agree to disagree. I'm sorry you are having symptoms. I hope you improve. BTW, it used to be against the rules to post e-mail addresses here. Of course, the rules may have changed; I haven't read them for a while. Good luck and I hope you, too, will keep us updated.

    KellyAnn, thanks so much for your encouragement and prayers. That is very sweet. Klonopin itself doesn't cause seizures but stopping it can cause rebound seizures. The Klonopin stops the slight state of seizure many of us experience. It is this misfiring and overfiring of neurons which cause us to feel jumpy; have sensory overload; experience insomnia, tinnitus, RLS and muscle spasms. The definition of sleep is a slight state of coma but when one is constantly in a slight state of seizure, one cannot get into the slight state of coma in order to get good sleep. Yes, $900 for meds is a lot. I hope and pray for you that they help. Like with the others, I hope you will keep us updated.

    Thanks, everyone, for you help and interest. I really appreciate it.

    Love, Mikie

  11. Mikie

    Mikie Moderator

    The following is taken from the Psychiatry and Wellness website and was written by Floyd Garrett, M.D. There is much more there but it gets lengthy, so I copied the first part, which seems to be most relevent here.

    Love, Mikie

    <u>Physical Dependence, Dependence, Addiction and Abuse</u>

    The first thing to get straight is the distinction between physical dependence, dependence and abuse in regard to substance use. The phenomenon of addiction is baffling enough in its own right without the added confusions resulting from the imprecise and undefined usage of terms. But there are other words which also require clarification: addiction, psychological dependence and substance dependence. All of these concepts are widely and sometimes carelessly used.

    Physical dependence is a normal and universal result of the sustained consumption of alcohol and certain other drugs. After a certain period of time everyone who takes the drug in a sufficient dose will experience a withdrawal syndrome characteristic of the particular drug if intake is suddenly stopped or markedly diminished. Drugs that cause definite physical dependence include:


    The nature and severity of withdrawal symptoms from drugs that cause physical dependence vary according to the specific drug, the dose and duration of its usage, and the specific characteristics of the user.

    <b>Physical dependence is not addiction.</b> Everyone who ingests enough of a substance that causes physical dependence will develop such physical dependence, i.e. a withdrawal syndrome if the substance is suddenly stopped or markedly decreased. But only a minority of individuals who develop such physical dependence will go on to become addicted to the substance. Addiction is not physical dependence - though many of the drugs to which people can become addicted are capable of causing physical dependence.

    Cocaine induces in some individuals one of the most powerful and difficult to treat addictions of all - but cocaine does not cause physical dependence in its users.

    The confusion of physical dependence(= causes a withdrawal syndrome in everyone who takes enough of the substance for a long enough time) with addiction(= a behavioral syndrome characterized by prolonged excessive and harmful use of the substance) is one of the commonest and most harmful errors of understanding in this area. The majority of laypersons as well as a substantial number of physicians believe that "addictiveness" resides in certain substances rather than in the vulnerabilities of individuals exposed to those substances. But in fact only a minority of persons exposed to drugs that cause physical dependence(= withdrawal or discontinuation syndrome) go on to develop the behavioral syndrome of addiction.

    It is obvious that the vast majority of people who consume alcohol, benzodiazepine tranquilizers(Valium like drugs) and opioids(narcotics) do not become addicts. Yet all of these substances are capable of causing definite and sometimes severe withdrawal syndromes.

    Physical dependence simply means that if the substance being used is suddenly stopped or markedly reduced, the user develops certain specific withdrawal or discontinuation symptoms in a pattern and course characteristic of that substance.

    Addiction refers to a complex behavioral syndrome that includes pathological salience(=abnormal importance of the substance), obsession with obtaining and using the drug, excessive, prolonged and harmful use despite adverse consequences, and the mental defense mechanisms of denial, rationalization, minimization and justification. In the current official diagnostic systems the word dependence is used in place of addiction, further complicating and confusing the topic since this is by no means the same thing as the physical dependence described above.

  12. steach

    steach Member

    I've been taking Klonopin since 2003 or 2004 for RLS and deeper stages of sleep. I changed PCP's and he sent me to a "pain & disability" specialist who told me that Klonopin is a major anti-depressant. He wants me to try one of the newer drugs which has less side effects. I am not experiencing any side-effects that I know of- I am on 2mg at bedtime. I am soooo afraid of changing meds due to adverse reactions. When my PCP changed my blood pressure med to a more affordable generic, it was a nightmare. I don't want to change my med regimen. What do I tell the new doc? He is convinced that Klonopin is NOT the way to go. My rheumatologist prescribed it. I don't want any conflicts between doctors. Any suggestions?

  13. mbofov

    mbofov Active Member

    That's great, so far so good. It does sound like slower is better.

    I know someone suggested trying GABA to help, as Cheney said the excitatory neurotoxicity in CFIDS was due to the brain receptor NMDA being more active than GABA. And that's the issue the klonopin was to address.

    If you're inclined to go this route, I believe the amino acid l-theanine is more effective than GABA, because l-theanine crosses the blood-brain barrier more easily than GABA, and l-theanine helps the brain produce GABA. It really is very relaxing but not "drugging". I gave some to my brother who has a nerve pain condition (I can't think of the proper name) but anyways he liked the l-theanine very much. His doctors had told him that his pain levels were related somehow to brain functioning.

    Here's a link to a good article about l-theanine:

    Well, good luck with this. I hope it continues to go well for you --

  14. Mikie

    Mikie Moderator

    Steach, I would recommend taking Dr. Cheney's article to your new doc and discussing this with him. Because of the way Klonopin acts in the brain, one probably cannot simply just switch off of it and on to a new med. If the Klonopin is helping you, the positive benefits may outweigh any potential risks. Of course, it affects everyone differently. I never had any residual grogginess in the morning. I wake up alert, refreshed and ready to go. I have found, however, that my emotions seem to be a bit "flat." I'm not depressed, just kinda flat. For me, this has been an acceptable trade-off. I have found since weaning down that my emotions seem to be a bit sharper.

    I'm not sure what this doc means by "Klonopin is a major anti-depressant." Klonopin is an anti-spasmodic, anti-seizure med. If you are having no side effects and the Klonopin is helping you, it would seem ill advised to make the switch. Some docs are afraid of benzos. Benzos are heavy hitter meds but they can be enormously helpful. If it were me, I would not want to switch but I'm not a medical professional. Good luck and let us know how it comes out.

    Mary, thank you so much for the info. I'm not having problems--yet, but this may be just the thing as I further wean down.

    Many thanks for all the interest and suggestions.

    Love, Mikie
  15. steach

    steach Member

    I'm not familiar with Dr. Cheny's article. Can you summarize it or give me a link to find it?

    Thanks for all your help.

  16. Missizzy

    Missizzy New Member

    Steach--The article by Dr. Cheney is right here at Immunesupport. Here's the link:


    My GP was the first person to tell me about the issue of neuroexcitability and Klonopin. It has worked almost flawlessly for me since the day I started it. Once, I missed two doses and my tremors, mini-seizures, and myoclonus returned with a fury as well as anxiety (which I'd never experienced).

    I called my pharmacist and she told me to immediately take a dose. She went on to explain that a person becomes dose dependent on Klonopin. When I asked if that meant "addicted" she firmly stated that Klonopin is NOT addictive, it is habituating. That seems to mirror what the article Mikie posted says.

    After reading this post, I agree that it is far too early for me to begin even thinking about titrating back on the Klonopin. I'll give this remission a few months (oh, how good the word "months" sounds!!).

    I think we need to remember that Klonopin can be very much like insulin. My son, who is diabetic, can no more miss a dose of his insulin, than I can my Klonopin. We are both dose dependent.

  17. dannybex

    dannybex Member

    Hi All,

    One thing that I don't think has been mentioned is the possibility in some patients of developing what is called 'tolerance withdrawal'.

    That means if one takes a certain dose of a benzo every day for several years, they can develop a tolerance to that dose, and may experience withdrawal-like symptoms, even BEFORE reducing the dose.

    That's what happened to me about 9 months ago. Then when I started to very slowly cut back the dose, the withdrawal symptoms came on very strong, but I guess because I was so brain fogged, I didn't attribute it to the klonopin.

    I thought I was developing MS -- I had twitchings, a LOT of tingling and numbness in my feet and toes -- all of which diminished when the klonopin dose was increased. But this was about 5 months later. I -- and my doctor -- had no idea these were symptoms from withdrawing from the klonopin.

    Yes, some people perhaps can go back on klonopin without problems, but keep in mind, klonopin can cause ANEMIA. And so my doctor ran blood tests, and sure enough, I'm now officially anemic. I've lost a ton of hair on top of my head, have had skin problems I never had before. We can't prove the anemia is due to the klonopin, but it may be.

    Keep in mind however that klonopin is the only benzodiazepine that has anemia and also low white blood cell count (leukopenia) as 'side effects'. How can we possibly fight infections if we're taking a drug that lowers WBC's?

    Cheney should mention these side effects when he praises the drug, and it should be noted on the dallas-fort worth CFS website.

    I'm currently using the Ashton protocol, where you gradually switch to valium, and then very slowly taper off of that. It's still a rough ride, but better than 2 months ago.

    Good luck Mikie and all,


    [This Message was Edited on 09/25/2008]
  18. Mikie

    Mikie Moderator

    MissIzzy, for finding that for Steach. I'm glad the Klonopin is helping you. Dr. Cheney does say that it's when one has recovered sufficiently that on may wean off the Klonopin. I tend to agree with him that the constant seizure state is harmful to our nuerons. Since I have achieved some measure of recovery, I am willing to try to wean down, or off, again. Today, I had the best day I've had in a long time. I've been on the Doxycycline for a week to ensure my mycoplasma infection doesn't reactivate. I was Herxing this morning, but it was different from other Doxy Herxes. I'm wondering whether the Doxy addressed something from that food poisoning which the Flagyl and Bactrim missed. But, I digress...

    Steach, I hope you find the article helpful.

    Dan, I know you have had a hard time. I hope and pray for your success.

    Love, Mikie
  19. Mikie

    Mikie Moderator

    Thank you so much for the suggestion. I just ordered the L-Theanine Calm-Plex with GABA and 5-HTP from the store here at ProHealth. It contains no salicylates, so it won't block the Guai. I also got some FA Guaifenesin.

    The pharmacist at Target suggested Vallerian but it's an herbal product and would block the Gaui.

    Again, thank you so very much. I'm hoping this will help take the edge off while I'm weaning down. The pharmacist said that when one cuts the dose, it takes about two weeks for the withdrawal symptoms to go away. She was very careful to tell me that it isn't addiction but rather physical dependence which causes withdrawal symptoms. I said, "God bless you!" Some who actually gets it. Yea!

    Love, Mikie
  20. jenbooks13

    jenbooks13 New Member

    Folks, call it what you will, benzos are some of the most habituating drugs out there and its said they're harder to get off of than HEROIN.

    Going slow is very important.

    If you're having trouble, use the water titration method (I'm using it quite successfully).

    Yes depending on your dose and physiology you can develop tolerance withdrawal at any time. That means your dose is no longer enough and you experience withdrawal symptoms.

    Don't go off suddenly. And consult with your doctor. There's a place for these drugs but they do change the architecture of the brain and longterm have significant risks you should be aware of. Also there are gaba receptors throughout the body. While titrating I experienced (and found I was not alone, that these are relatively common symptoms): a swallowing disorder where I aspirated food, muscle cramps, insomnia, wheezing, hypersensitivity to smell and touch, etc etc.

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