Yes, It's True; I'm Weaning Off Of Klonopin--NOT

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Sep 1, 2005.

  1. Mikie

    Mikie Moderator

    I have been such a huge advocate for Klonopin for anxiety, sensory overload, tinnitus, RLS, insomnia, and other seizure activity related symptoms, that I'm sure this will come as a shock to some here.

    I still feel that the Klonopin is one of the best things I have ever done; however, my recent fatigue and sleep study have confirmed that I am getting no Stage Four sleep and almost no Stage Three sleep. Benzos can interfere with deep sleep. The Klonopin, which used to help me get good, refreshing sleep, is no longer working. I'm hoping when I've weaned off, my sleep will improve. If not, I'll have to seek another solution. I'm not going to try anything else until I'm off the Klonopin at night.

    As I've gotten rid of so many of the pathogens which cause chronic infections, I am slowly improving. I recover faster from exertion and am hoping to be able to increase aerobic exercise. Dr. Cheney says that he has never seen PWC have a problem weaning off the Klonopin when it is no longer needed.

    I am not really having a problem. I've cut the night time dose 25 percent from 1 mg. to .75 mg. I will do this for at least a week before cutting it another 25 percent. The first night, I woke up at 3:30 but was able to go back to sleep. Since then, I've been waking later and later. This is a good sign. I now wake between 5:30 and 6:30 a.m., which is normal for me. I'm no more fatigued than I had been for the last 1 1/2 months.

    I've substituted 1/4 tsp. of sea salt, magnesium, potassium, and calcium supplements during the day. This seems to work well for keeping the seizure activity down. I'm just a little bit edgier than normal, but it's not a problem. I'll keep y'all updated on how the withdrawal is going.

    I still think the Klonopin is a great drug for those whom it can help. Sometimes our health changes and we need to be able to change with it. Despite the recent fatigue, I believe my getting better may mean that I don't need the Klonopin anymore or it could just mean that this drug no longer works for me. I don't know.

    Love, Mikie
    [This Message was Edited on 09/13/2005]
  2. EllenComstock

    EllenComstock New Member

    I've read some of your posts and just wanted to tell you I am sorry you haven't been doing as well. But you are right. If something is no longer helping, it's time to wean yourself off and try something else.

    Ellen
  3. CAAnnieB

    CAAnnieB New Member

    Hi Mikie,

    I'm waiting to get my written report from my 2 sleep studies...But, I too am trying to slowly taper off the Klonopin. I just can't tell any difference after being on 1 mg Klonopin at night for 1 year. It may be a help, but I just don't know.

    I too worry about it interfering with my sleep. In general, Benzos are not good for our sleep. I have read the opposite for Klonopin, tho'(that it can help with sleep)...But the only way to figure it out is to go off & see what happens...

    The sleep clinic called & told me to make an appointment with their Respiratory Therapist to get a CPAP...Seems they were able to get enough data from my studies to indicate the need for a 30 day trial with the machine. I am hoping that I will experience a big difference in all symptoms being on the CPAP! I'm keeping my fingers & toes crossed that this will be a dramatic breakthrough for me.

    Thanks for posting about your change in decision re: the Klonopin. Many people here (including me) follow what successes others have with certain treatments. It's good to know when things change.

    I am hoping that I have enough improvement on the CPAP so I can get off some of these meds...I dream of the day I can be med-free!

    Blessings,

    Anne
  4. Mikie

    Mikie Moderator

    Anne, I sure hope the CPAP helps you. I had no sleep apnea, so that is not the problem for me. Others here have said that once you find a mask which is comfortable, the CPAP machine really helps with sleep and fatigue. I hope this is the case for you.

    Tia, PWC stands for People With CFIDS. We use a lot of shortcuts here and it's always smart to ask when you encounter one you haven't seen before.

    Love, Mikie
  5. PITATOO

    PITATOO Member

    PWC- Person with CFIDS
  6. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I've seen this so many times, w/ myself, and most others w/ the env. diseases. It reminds me of AIDS patients, and how the virus reroutes their immune system again and again. It's like something about our dx reroutes the aid of whatever drug and sometimes supplement that may have worked for a long time.

    I wonder sometimes if I'm not on borrowed time w/ the effectiveness of the painkillers I use. I hope I've checked that problem, by fluxing between two, codeine and oxy, since I build resistance sooo quick (week or less).

    I saw another of your posts about gettng off Klonopin, and how the electrolytes were really helping you. Would you care to tell all about that? I'm always cheering on the sidelines when someone finds something natural to replace a drug.



    Jeanne
  7. lvjesus

    lvjesus Member

    I am sorry you are having to switch, but I thank God that you have been the advocate you have for this here. I don't know if you remember or not, but I was having so much problem with the lights in the grocery store and then here at work that I went to the doc and asked for it.

    It worked for me the first night. The next day, all that was gone and I even managed WalMart with no sunglasses! I pray that you will find something else to help you and that you will not suffer any consequences from going off.

    Sonya
  8. laura81655

    laura81655 New Member

    I'm sure you know all about tapering very slow off benzo's. You may want to stick with a quarter cut for a month before you taper again. I started grinding my teeth at night, and had to taper down more slowly off valium.

    Professor Heather Ashton wrote a book about tapering off benzo's and has a lot of useful information on how to go off benzo's safely. You can find her info on the net.

    Hope it continues to go smoothly for you,
    -Laura
  9. wildwoodlane

    wildwoodlane Member

    Mikie, just read you are getting off Klonopin. I am having problems with Ativan -- neurological buzzes that I call "brain zaps" when I am drifting off to sleep and again when awaking and I think it is from cutting back too rapidly. Are my buzzes the same as your seizures? I have been taking only 1/2 a .5 mg Ativan at bedtime. It seems to me, though, that the nerve problems began when I was still ON the dosage. What is going on here? My nerves are totally shot and my doc doesn't think it is the Ativan. Says he thinks it is "psychosomatic" and that I perhaps should see a psychiatrist about my anxiety. Unfortunately, Medicare doesn't subsidize this kind of treatment and I can't afford it. What now? How about some natural treatments like herbs (that are safe for someone with high blood pressure)? Anybody have input? How long does it take to get the benzos out of your system? Am I being too impatient? Does it take months?

    Thanks, Mikie, and anyone else.

    wildwoodlane
  10. bpmwriter

    bpmwriter New Member


    i have been taking klonopin for sleep for about a month and question its effectiveness for the type of sleep we need with these illnesses. i sleep all the way through the night on klonopin without waking, but i never feel as good upon rising as i did on lexapro or even lyrica. a DEEP sleep is critical. a lot of folks on the board take zanaflex or other muscle relaxants as their primary sleep med and i imagine these meds could cause the same problem: relief from insomnia but no deep, healing sleep.

    i have found that i prefer klonopin over xanax for anxiety and sensory overload symptoms, but for sleep, i question its usefulness.

    eddie
  11. lvjesus

    lvjesus Member

    If you take Klonopin for sensory overload, when do you take it? And what do you take for sleep? I am waking at night again and am thinking it is going to be back to the doctor for me... :-(

    But I am not giving up Klonopin for sensory overload.

    Sonya
  12. Mikie

    Mikie Moderator

    I'll see if I can respond to everyone. Thank you all for your info and concerns.

    Jeanne, the body is basically like the internal combustion engine. Our electrical activity is like the spark plug. If the plugs are fouled or the timing is off, the engine can't run as it should. For some reason, many of us have slight seizure activity in our brains. This leads to insomnia, sensory overload, muscle spasms including RLS, tinnitus, and anxiety/panic attacks. Our internal electrical system isn't working and it produces misfiring and overfiring of the brain's neurons.

    I am starting to believe that our bodies are very poor at utilizing nutrients and vitamins. That is why taking the Klonopin stops these symptoms. It is an antiseizure med. I also think, like Dr. Cheney, that as we start to heal, we may no longer need the Klonopin if the salts and minerals are available for use. We may need to supplement those ingredients at larger doses so that our brains can use them to produce the electrical activity.

    Our mitochondria also use electrical activity in order to make energy. This is why athletes drink the sports liquids. They support the electrolytes in the body. Hope this makes sense. It's just my opinion after some research and experimenting. I am not having the usual anxiety and sensory overload that many experience when withdrawing from Klonopin. I believe that I am well enough now that if I supplement the raw materials, sea salt, calcium, magnesium, and potassium (which are in the sports drinks) my brain and body can utilize them.

    Sonya, I still believe in the Klonopin. It has been one of the pillars of my treatment regimen. My sensory overload was so bad that I couldn't go in Wally World or anyplace else which was harshly lit, noisy, and confusion. I couldn't drive without the Klonopin because the traffic confused me. I am not having that now as I wean off the Klonopin. I believe the salt and supplements are helping my brain to function more normally. I'm glad the Klonopin has helped you and many others. Sometimes, though, a med just stops works as our needs change. That is what has happened to me after almost four years on it. Switching from one treatment to another often takes time and can be challenging. The supplements are helping me transition.

    Laura, thanks for the info. I will definitely go to the Heather Ashton website. Thanks again.

    Wildwoodlane, I am no doc but it doesn't make sense that the buzzing and zapping are psychological in nature. They sound more neurological. If it were me, I would find a doc more knowledgeable in these symptoms, perhaps a neurologist who can test you. Good luck.

    Eddie, When I first took the Klonopin, I did get good quality sleep and woke up refreshed and alert. About a month and a half ago, it just stopped working for sleep for me. That is why I am weaning off of it. No sense taking it if it isn't working. If I need to take something else for the deep sleep, I will, but I feel I need to wean off the Klonopin first. If I'm extra tired during this period, it will be no worse than how I have felt for the last month and a half.

    Again, thank you all for your interest. I hope I have responded to your questions and remarks. If I missed something, please, let me know.

    Love, Mikie
    [This Message was Edited on 09/02/2005]
  13. tansy

    tansy New Member

    after taking balanced electolytes, in this case Recuperat-ion as used in the Blasi protocol, being able to consider coming off the klonopin comes as no surprise to me.

    We know there is a intracelluar ion channelopathy in these DDs, Professor Peter Behan describes how much energy is wasted as our bodies try to address the Mg and K leaking from them. The mitochondria are affected too.

    Using products like Recuperation means we are taking easily absorbed and utilised forms of these essential minerals in the ideal ratios for normal cell function. They also help with hydration, another issue for many of us.

    Treatments such as this have a low risk factor and feedback indicates they are helping a lot of people with FM and ME/CFS. It's based on Alfred Blasi's own research whilst he looked for a better way to treat his FM. What he came up with is good old fashioned common sense, rebalance the imbalanced intracellular ions so the cells can function better.

    It can take time for the benefits of these to be felt, but some like you are lucky and discover the difference very quickly. I had to start on just half a sachet of Recup, then I was able to raise it to a whole sachet but split into two doses taken at different times of the day.

    Good luck, and do keep us all updated on how things go. Dr Sarah Myhill believes it is the illness that makes us deficient in so many essential nutrients, that's why supplements have been used for several decades now to help treat these DDs. We often need higher levels to bring our levels up than we can source from food sources alone.

    love, Tansy
    [This Message was Edited on 09/02/2005]
  14. Mikie

    Mikie Moderator

    If it weren't for you, I wouldn't even have thought to try this. I know the way I'm doing this isn't as ideal as using the Recuperat-ion, but it does seem to be working well for me.

    I just got back from the pool where I did water aerobics and swam laps. I've lost four pounds this week and that, combined with the exercise, feels good.

    Thanks for your help and support. I'll keep you updated and you do the same.

    Love, Mikie
  15. jsshutt

    jsshutt Member

    couldn't handle the withdrawl. My husband said I jerked all night and I shook all day and couldn't do anything but cry.
    I chickened out cause I breed expensive kittens and I have a few litters left with many clients counting on me at this time.
    There is always something that stands in the way. Klonopin does nothing but make me drowsy at night, I need additional sleep meds to sleep.

    What is the recoup-eration?? I cnt really follow the details of the minerals and salts and electricity we need as my ADD has gotten worse after the birth of my last child.
    Would this lesson my withdrawal? There is no real way a mom can go through the withdrawal with out help.
  16. lilbird

    lilbird New Member

    I started on Klonopin about a year ago after all the praise you had given it. It has helped me with, sleep, RL, panic attacks. I reasently ran out of it and was unable to get to the drug store, its a 40 min. for me. I had soooo much trouble sleeping that night, I could not get to sleep and when I did I would wake up every 1/2 hour or so.

    I was hoping, with my treatment at the FFC that I would be able to wean off some of my perscription meds. But I guess the time has not come.

    I am interested in the sea salt, magnesium, potassium, calcium suppliment you are taking . Can you tell us about?

    Sorry to hear you have not felt well latly. Hope that improves soon,
    Cathy
  17. Mikie

    Mikie Moderator

    And it is working, I think it's a God send. It just isn't working for me for sleep anymore. I don't know why it stopped helping me to get refreshing sleep. Perhaps, as Dr. Cheney believes, when we have healed enough, we no longer need the Klonopin and weaning off isn't a problem. If weaning off is a problem, perhaps one should stay on it. I believe that no only has it stopped working for me but may be interferring with my deep sleep. That is why I'm stopping it.

    There is really nothing magical about what I am doing. I'm just taking 1/4 tsp. of sea salt and OTC supplements of calcium, magnesium, and potassium--the raw ingredients which the body needs to produce electrical activity. I believe we are deficient in these minerals and that by supplementing them with the salt, our neurons can fire more smoothly. It should also help the mitochondria be able to produce energy in our cells.

    The Recuperat-ion is a product sold in Spain and it has the above ingredients in the proper proportions for the body to use.

    My theory is that the body is wise enough to be able to assemble these ingredients in the proper proportions from the supplements. For me, it seems to be working, at least, enough to help me wean off the Klonopin without excess seizure activity and symptoms.

    This seems to be a fairly harmless experiment, but it is always wise to let one's doc know what one is doing.

    I hope this helps explain it better and good luck to anyone whose Klonopin no longer works and needs to wean off. If the Klonopin were still working for me, and I wish it were, I would not be weaning off of it.

    Love, Mikie
  18. bpmwriter

    bpmwriter New Member


    for sensory overload, i take a low dose of klonopin about a half hour before i go out (ie. the mall, a restaurant, anywhere where there's lights, smells and noise!)

    as for sleep, the klonopin is all i have for sleep right now, but i just received a script for lyrica which should be available in a couple weeks here in the states. i participated in a clinical study on the drug and i seemed to be getting more restful sleep then. it's expensive, but i may go back on it.

    eddie
  19. wildwoodlane

    wildwoodlane Member

    I think you are on target about my seeing a neurologist. I have thought about that, too. Failed to ask my doc about this when I saw him but he would probably refer me. I am getting concerned about the long-term effects of taking benzos and would love to taper off. Wish someone would give me a schedule and time-frame. I have been taking 1/2 of a .5 mg. daily of Ativan and tried backing off to 1/4 tab (which amounts to a crumb!) but have only done this about two weeks, then started having nervous attacks. Is slower the answer? Like a month or so at 1/4? I appreciate so much your response and input of others on this board.

    A thousand thanks - Garland (wildwoodlane)
  20. Vada

    Vada New Member

    HiMikie: Good for you for doing what you think is best for yoou. I used to take klonopin 4 times a day. When I had the last hospitalization in May my one doctor on call stopped it immediately and I suffered horribly. 3 days later when my regular doctor saw me in the hospital he stopped the .5 mg at nite completely. however, I can not function without my 1 mg in morning and .5 at lunch and at dinner. I experience horrible auidtory sensitivity and have major panic/anxiety attacks. However at night I now take 200mg Lamictal and 50 mg Trazadone which puts me out completely at nite. If'm dreaming that I need to go to the bathrom my body wakes up, I stumble in to go and stumble back to bed and immediately fqall dead asleep. When my husband gets ready to leave at 6:30 he lightly touches me and I say goodbye but immediately fall back to sleep until after 8:30 pm.

    I wish you well. LaVada