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Desperately need help with failed Klonopin/Valium taper - life is a mess

Discussion in 'General Treatment' started by Bunchy, Jan 8, 2012.

  1. Freddd

    Freddd Senior Member

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    Hi Nielk,

    All those remarks are basically on opioids. Those are the SIMPLE meds to get off and are not DANGEROUS even if done badly. Benzo tapers are far more dangerous and to do rapid benzo removal from the body, has no known method of which I'm aware. Again, if it is a switch, what drug is used to prevent a benzo withdrawal, another benzo which nobody is familiar with any more such as tranxene maybe? The danger with benzos is potentially fatal sezizures, unpredictable and with Klonopin, around day 7 to 10. I don't know of any safe accelerated way to get off Benzos. If this guy has found it there should be a study somewhere. Benzos are potentially dangerous drugs, and I was on them for years. How many other drugs can kill you if you miss your renewal?
     
  2. runner64

    runner64

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    NEILK, ask the benzo board members I linked below, about Dr. Sponaugle. The boards I listed have got thousands of patients of his that paid high dollar only to end up protracted like me, or reinstating to taper because of physical symptoms due to how benzos change the brain. He's not an expert. MOST of mainstream, and NONE of these detox doctors that detox learn how this drug changes the "function" of the brain, therefore, they treat benzo people like they are coming off of all the other drugs, that don't change the brain function LIKE BENZOS & SLEEPING PILLS..

    Detox stories and that method IS too good to be true. You'll end up protracted.


    Why do you think I'm an activist? Why did I link all of the information? Why did I link lawyers and authors and activists and parliament members helping the public? Because I'm over exaggerating? Why did I and countless others worldwide get attorney's?

    People detox off of benzodiazipines every day.

    Some quit in one day naively like me not being told if dependent you can't do that, others pay $30,000 dollars and go to Florida Detox (they've been robbing benzo people blind for years) or many of the other benzo detox clinics that advertise.


    They use "amino acids" and other drugs for body support. Do these methods heal the GABA receptor to prevent benzowithdrawal syndrome sec by sec symptoms for 6 -18 months once off. NO.

    If you do end up past the date and seizure free, because you're off the drug and you were dependent first, it means you will have physical symptoms sec by sec for 6 - 18 months or longer until you heal.

    You adrenals will be jacked open shooting cortisol for up to a year or more.

    No sleep as the "function" allowing sleep was injured. 6 - 18 months to come back.

    Your mind will process information to fast because the brain's calming mechanism takes 6- 18 months to come back. For the first few months you will not be able to understand how to do simple tasks.

    You will have motor problems, sensory, visual, accoustic, muscle spasms, brain nuero problems sometimes physical feelings from the nerves that run through blood vessels through gray matter in brain, and body nerve pain, all for 6 - 18 months.

    Go to www.benzobuddies.com or www.benzofreedom.com and ask the members that detox'd how they did.

    You will see two things. 1) They are in "chronic withdrawal" sec by sec in month 5 and live on benzo boards getting "vocal" coaching support daily like "ride it out one more day" in pain unable to think until they can function and who knows when that will be as it's so slow,

    or

    2) they reinstated to slow taper.

    Baclofen, pheno, NONE of these drugs, MAKE the brain produce GABA receptors to restart the brain and central nervous system's calming mechanism. It doesn't sound like much. The lack of the BRAIN and BODY function, plus physical pain brings people to their knees. PLUS the rapid removal makes people feel virused with low grade fevers for a month to a year.

    I'm not kidding. BENZOS are not like other drugs because of it.

    If you don't believe me, log into those boards and ask people. I quit and wasn't told to taper, I was in chronic withdrawal for a month, I felt like I was getting better at two months. At three months, symptoms went up, and I stayed in chronic severe second by sec movement and pain for over 20 months straight every single day. It's NORMAL to feel like it's going down but then PEAK at 3 months plus and get worse, I road severe all the way to 20 months finally to moderate from 20 to 24 months. Over 24 months to heal. NON functional. Physical, not psychological. Many do. I couldn't balance a check book, understand writing, got low grade fevers, eye muscle contractions, head muscle, brain squeezing sec by sec daily, Parkinson's shakey, lead body, bulging eye symptoms, cortisol, nerve and cheek bone, face, eyeball, head, all nerve pain, mouth nerve pain, gum, leg and back muscle pain with nerve pain, it felt like my brain was exploding inside, head pressure, eye pressure, all the while not able to balance a check book or understand simple tasks. Not able to walk 50 % of the time from 8 - 12 months because it's so hard on the body to lose the calming mechanism through the brain and central nervous system. This was sec by sec. Some get windows. I got non until it finally started to come down and it took that long for the brain GABA receptors to heal and come back so my brain and body "functioned" normally.

    (And I am a non drinker, no smoker, hardcore fitnesshealthy food forever girl and it brought me too my knees.)

    This is what it feels like when your brain and central nervous system lose the ability to run at normal speed. It's physical, like I explained it. NOT psychological. It took me 2 years to PHYSICALLY recover. THIS is why I posted what I did for you people.

    FREDDD gets benzos. Why ask people here other than those familiar with the drug?

    This drug is not like other drugs. This is unique to benzos and sleeping pills which are like benzos. I linked it all here for you. You'd be wise to listen to FREDDD or go to benzo boards and ask questions.

    It's called "benzodiazipinewithdrawal syndrome" for a reason and it has been covered up like many things today.

    To avoid it, slow taper. If you are a lucky one and can take daily with no dependence it doesn't apply to you. These people are few and far between. As soon as they quit, they're fine. If you are in withdrawal after quitting and it can take up to a week or more sometimes to show you're going to be in withdrawal, depending on the half life of the benzo you are on, reinstate and slow taper to avoid my scenario.

    To avoid dependence, take a benzo or sleeping pill ONLY once or twice a week. MAX.

    Daily consistent dosing, that means LOW doses then, change the brain.

    If a mainstream board says you can't reinstate past 2 weeks they're wrong. www.benzofreedom.com specializes in reinstatements to tapers and some doctors are starting to learn to use her method and getting people stable and then daily functional so they taper and get around.

    As yourself, why are millions on these drugs? The answer is not because they are in therapy, they are stuck on not knowing how to get off. That's why. My friend Karen at benzofreedom has a great gentle taper to bring to show your doc, OR FREDDD can give you the info. There are unfortunately NO shortcuts with benzos once the brain has changed signaling dependence.

    Good luck you guys. I have a pathogen infections. (I tested positive for mycoplasmas and co infections from saline breast implants, now explanted but still sick, I am waiting on results from a neuro lymes test as well.) The pathogens are giving me symptoms of CFS so I am dealing with it using antibiotics and supplements for virals etc., so I went to another board geared that way.

    (I've come across a few with implants period, not breast implants, that have pathogen infections. Upon reading abstracts and getting educated from my board, it seems mycoplamsas and co infections can get in from surgeries laying dormant until a body stressor activates them. Quite a few told like me they had ME/CFS and Fibro, some Parkinsons, MS, and neurodegenerative diseases and it's lymes or mycos like I tested for therefore perhaps treatable to cure. Just FYI. I learned more on here. www.immed.org) I understand it is different for everyone. I just like to pay forward from what I learn. Maybe it helps some, maybe not.

    I do wish you all the best and I hope you all heal and or get relief some way to get in life the way you deserve. This whole chronic illness thing is really for the birds. My heart goes out to everyone.

    xoxoxo *remember, benzos are serious. Much was covered up. If you want validation I linked you where to get it, research Pharmacologist and Anesthesiologist Dr. James Wright who studies drug side effects, and how they work in the brain, and prescribing behaviors of the mainstream medial community, and he is NON PHARMA CO. funded. He is working to educate doctors therefore the public at the University of British Columbia Vancouver B.C. Canada being one. His group is called Therapeutics Initiative.

    He'll tell you the truth for free. Email him. Go ahead.

    He's not like detox program with no knowledge about how these drugs work that will charge you $30,000.00 and you'll end up with benzodiazipine withdrawal syndrome for 6 - 18 months or more.

    Last, cold turkey off of benzos besides seizure can set you up for protracted ongoing sec by sec symptoms for a long time.

    If you want to learn about waverunners to take the beach, would you go into a snowmobile shop and start asking questions?

    Go to the people that went through it, are going through it, and ask the activists, the doctors, and email the parliament members I linked you.

    My posts (runner64) in this thread are full of the validating info and people, docs, activists, attorney, and sites you can contact.
    http://forums.phoenixrising.me/showthread.php?16103-How-do-we-treat-severe-insomnia-for-cfs-me
     
  3. runner64

    runner64

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    THANKYOU FREDDD.
     
  4. runner64

    runner64

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    It's a huge scam

    I know hundreds that have passed through the benzo sites only to have spent all that money at Florida Detox, to have to reinstate to taper because their physical sec by sec symptoms kick in and are too strong and they can't tolerate the pain and confusion, in order to function.

    None of these drugs, can bring the brain's and central nervous system's ability to calm and reset so the brain/body works at normal speed.

    They don't touch GABA receptors, they can not "miraculously" make a GABA receptor that was DISSOLVED by a benzodiazipine or sleeping pill " reappear."

    It's simple science.

    I wrote about it in this link.
    http://forums.phoenixrising.me/showthread.php?16103-How-do-we-treat-severe-insomnia-for-cfs-me

    If anyone has an easier time coming off a benzo or sleeping pill with less withdrawal is PURELY 100% because of genetics and their GABA receptors were less compromised or not compromised.

    IF a LAY person reads these "Sponaugle Detox" comments eg: the first poster swears by detox, the lay person reading will think it's because of the detox program's drug cocktail that got them off easy.

    Those of us educated in this are fully aware it's ONLY because the benzos or sleeping pill didn't take away this individual's brains and central nervous systems calming ability due to genetics.

    The post's saying it wasn't the way to go, were compromised genetically by a benzo so all the drugs in the world, are not going to stop benzowithdrawal. Especially not detox.

    Email a pharmecuetical company Hoffman - La Roche, the makers of Klonopin, they'll tell you. "We are fully aware of benzodiazpine withdrawal and the syndrome associated with it and we warn doctors to warn patients. Withdrawal is on the insert. We're clear."

    They know the GENETIC factor. And they're not specific on the insert, but it's LEGAL.

    This is really serious stuff. It is. This particular drug and discontinuing it, will determine if you keep your job or you're in harsh withdrawal which in REALITY is NOT withdrawal but recovering from functional brain and cns injury and - a) your family doesn't believe you are in withdrawal as they believe the doctors and - b) your doctor doesn't believe your "invisible" painful withdrawal symptoms and say it's psychological.

    People get no support from the medical community and no support from family.

    I know this. I helped people for a couple of years. THIS is real.

    As well, remember, 85% of these people are not addicts but taking this drug as prescribed just like you, just like I did. AND, same with the majority of opiate people. ON benzo boards you'll meet NON drug addicts like the woman that owns the flower shop tell you how long opiate withdrawal was for her, she took it for a legitimate pain condition and her doctor never told her about opiate withdrawal. Now she's off the opiate, and got to stop a benzo given while on opiates for pain the benzo to relax muscles. She came off one, now she's got to come off another completely uninformed or prepared NO fault of her own.

    Both with their set of problems.

    Opiates are not like benzos, but for SOME it can have a long emotional withdrawal lasting 2 years. Crying everyday, a different type of protracted but protracted. Depression huge. The opiate or Subutex as referred to above, doesn't change the body and brain's calming mechanism but it CAN have it's own unique set of problems.

    Go to the forums and ask real people. This is real. The effects of these drug are very real, due to genetics coupled with which part of the brain they act on. Ask the people on them and coming off. They are largely NON addicts and will tell you the truth.

    It's serious stuff. Not to be taken lightly. I can't stress it enough, ask the people going through it.

    And benzowithdrawal I've outlined, how detox is, go ask people on the benzo boards that did it, so you have it validated, it's not the way to go.
     
  5. Freddd

    Freddd Senior Member

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    Hi Runne64,

    I ran into the junk 8 years ago when the time came for me to get off valium. I had been giving other people tapers for a decade at that point, then I did my first benzo taper for myself. I had done many other drugs before that, all successful. I am happy to report that it was entirely uneventful. It's hard to have patience to do a 2 year taper. That is where most people get in trouble. It works so well they stop doing it and make big and fast cuts that gets them into trouble. Klonopin takes 300-600 hours to reach equilibrium from any one change. To give an idea of what the effect is 1mg a day dose of a medication with a 24 hour serum halflife will end up with the same serum peak level as a single 2mg dose. A drop of 0.1mg ends up being a 0.2mg drop in peak serum level effect by the time 240 hours has passed. With a 30-60 hour halflife the multiplier for a daily dose is more like 2.25 to 4.5 times serum peak. For whatever reason the handout tapers from a doctors office is usually more like what is given addicts to get them off fast and damn the torpedoes. The taper schedules I run include a total mgs needed. For a 1% taper the amount needed is 100-101 days worth at original dose. So for a 1mg dose approximately 100.1mg is needed for the entire 1% taper.

    It's rough enough being sick and needing the benzos in the first place. To have withdrawal symptoms on top of that make such tapers almost impossible to do, then it gets much nastier becasue addicition starts being asked about then, when all it was is an accomodation problem with a too fast withdrawal. The body has to have a chance to recover and a sick body doesn't recover as quickly. I include typically 3 rates so people can make it even slower for parts of the taper if needed. The whole point with protracted withdrawal syndrome is DON'T GET IT STARTED.
     
  6. runner64

    runner64

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    Freddd you summed it up in fewer words. I hope people take this seriously.

    You're dead right, you said:

    "It's hard to have patience to do a 2 year taper. That is where most people get in trouble. It works so well they stop doing it and make big and fast cuts that gets them into trouble."

    >>That's huge, he's right, that's exactly where and why people get in trouble.

    You said:

    "I am happy to report that it was entirely uneventful."

    >>Doing it right, it can be. You guys NO detox. It will be costly and NOT UNEVENTFUL by any means.


    You said:

    "For whatever reason the handout tapers from a doctors office is usually more like what is given addicts to get them off fast and damn the torpedoes."

    >>Exactly, lack of education in the medical community about benzos and what they do to the brain function and they give out RAPID TAPER instructions, too fast to come off spells strong symptoms, and possibly protracted past 18 months.

    You said:

    "It's rough enough being sick and needing the benzos in the first place. To have withdrawal symptoms on top of that make such tapers almost impossible to do, then it gets much nastier because addiction starts being asked about then, when all it was is an accomodation problem with a too fast withdrawal."

    >>Boom, then docs start to say people are addicts when a person wants to reinstate taken off too fast, or simply slow down a taper because of strong symptoms. Docs don't recognize symptoms as happening and say a person just wants the drug. So you have to plan carefully if you want to come off and find a doctor that will work with you to SLOW TAPER.


    You said, and all of these points he said are really important:

    i)The body has to have a chance to recover and a sick body doesn't recover as quickly.

    ii)I include typically 3 rates so people can make it even slower for parts of the taper if needed.

    iii)The whole point with protracted withdrawal syndrome is DON'T GET IT STARTED.



    >>In the benzocommunity we always say a body driven schedule, NOT a calendar driven schedule. That's kind of Freddd's point ii). You go as slow as to keep symptoms down, you don't allow anyone to push you or get overzealous yourself saying "I want off in 2 months." That paves the way for protracted withdrawal symptoms as the brain has to catch up with the rapid reduction and that can take a while.

    As FREDDD said, "The whole point with protracted withdrawal syndrome is DON'T GET IT STARTED. "

    THANKS FREDDD!!! YOUR THE BEST!! xoxo :) :hug:

    He knows this drug. Few do unless they've been through it. I wouldn't wish the syndrome or protracted on anybody. There is a lot of good information on this thread in regards to safely and comfortably discontinuing a benzodiazpine or sleeping pill (z-drug) as they work the same way in the brain and central nervous system, if one has become dependent.

    Please understand, there is no quick way as said and why in this thread.

    But if like FREDDD said, done slowly the right way, it can be uneventful.
     
  7. Nielk

    Nielk

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    I have been doing research and have come to the conclusion that Fredd and runner are right. There is no shortcut here. At least not for me. I am very sensitive to medications in general and especially with withdrawals off of meds. For some reason Dr. Cheney decided that Klonopin is safe and even protects the brains of CFS patients. He commented that one can even double their dosage when they are crashing and stated that he never had trouble getting his patients who are recovering, get off of Klonopin. Dr. Bell agreed with him and then many CFS specialists adopted the same strategy. The doctor who first put me on it is a psychiatrist who himself suffered from CFS. He himself took Klonopin which he found helpful. The reason he started it is because of Dr. Cheney. This psychiatrist has since then retired and he is the one and only person I know who recovered from CFS. He doesn't know why he recovered but at one point he was s severely affected that he was wasting away - dying. I spoke to him yesterday, asking him about Klonopin and how to taper off f it and he said that he doesn't remember having a hard time tapering off. In general, he is very cautious, so I'm sure he took it slowly but doesn't remember having any trouble. (Maybe because his CFS was gone?) I am obviously very different. I have read and I think mentioned on this thread that it is a genetic component why some people have a much harder time with this.

    The more I read and think about it, the more I realize that I have been in a progressively worse dependency stage with this drug. This whole year for me has been the most severe out of my 9 with this illness. It's about a year ago that I decided not to augment my dosage of Klonopin, even-though I had more and more symptoms of withdrawal. My sleep is worse (even with Ambien) my sensory excitability has been worse. My threshold of stress has been shrinking. I thought all along that it's just the CFS getting more severe and this might be true but looking at it with this new point of view, it could just as well be the tolerance to Klonpin which results in withdrawal side effects.

    So, here I am, in a weakened state and perpetual withdrawal symptoms which aggravates my whole condition. What do I do? I'm still tapering off an SSRI that was given to me in order to help me with the taper of Klonopin. It was a real disaster and I have to taper it ever so slowly because I had very scary side effects coming off it. (thanks Fredd for your advice)

    What do I do next to try to stabilize myself somehow in order to start Fredd's taper?
     
  8. Freddd

    Freddd Senior Member

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    Hi Neilk,

    It took me 9 months to heal enough that most of the reasons I was taking the Valium had dimminished. This was due entirely to mb12's effect on the nervous system and rest of body. Much of the muscle spasms had decreased and gone away. Most of the neurological pain dimminished. The nervous system painful buzz went away. I was taking all the basics, vitamins and minerals, oils and had added the mb12. Mb12 has neurological protective and healing effects unlike any other form of cobalamin.

    Some people having very extreme reactions to mb12 have found that a titration starting with literal crumbs, (1/16 of a 10000mcg Jarrow or enzymatic therapy) is effective and achieves a slow start. I would genuinely place your odds at about 50% of having a substantial degree of recovery in a year if you can get started with a slow titratration, the reverse of a taper. I have found that some people with a lot of protracted withdrawal more than a full year after finishing a not so great valium taper were able to get relief from methylb12.
     
  9. Nielk

    Nielk

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    Hi Fredd,

    So, what you are saying is that I should first build myself up with mb12 and stay at my current dosage of Klonopin?
     
  10. Freddd

    Freddd Senior Member

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    Hi Nielk,

    That is a difficult call. That is when I decided to taper, when I no longer needed it. I wasn't having the same kind of interdose withdrawal. However, as a taper of this sort is going to take 2 years or so, there is not really any reason not to start that I know of it while the other is happening. Again, I think a slow increase starting with a crumb of mb12 while getting all the basic vitamins, minerals and fats going as well which will allow the mb12 to be effective.
     
  11. Ocean

    Ocean Senior Member

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    Neilk, I don't know how regularly you take ambien but a lot of the symptoms you described or all of them are ones I get from ambien use. If I take it more than a couple days in a row, I start running into problems. If I understand right ambien has a really short half life and basically you start having withdrawal before you even take your next dose the next day and especially so once you start building a bit of tolerance. I wish you luck getting off the Klonopin. I'm glad so many here have written about it because it helps others who may have considered trying it to know all angles of the experience.
     
  12. Nielk

    Nielk

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    I take the Klonopin and Ambien every night, The Klonopin doesn't work for sleep anymore but, I'm addicted to it and if I don't take the full amount, I have very bad withdrawal effects, I can't sleep at all without the Ambien so it's not an option not to take it, I feel like these meds are running my life. I don't know if I have an option not to take them as long as I have a severe cfs case.
     
  13. Ocean

    Ocean Senior Member

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    I can understand, Nielk. I have sleep trouble too. The whole thing is a tough spot to be in. It sounds like your gut is telling you klonopin is making you worse. If that's the case I'd consider following that instinct. Is your doctor knowledgeable enough about this to help oversee a slow and safe taper?
     
  14. Nielk

    Nielk

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    Doctors are very quick to prescribe medication. In a way, I get it because they see a patient falling apart and in a lot of pain. The only way they know how to alleviate it is by prescribing these meds. When it comes time to taper off, that's a different case. They know which ones need slow taper and you can't just stop cold turkey but, so far whatever they tried to help me with has not worked out, It could be me. I think I'm especially a hard case for some reason. Withdrawing from these meds are a horror.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Nielk, i know its hard to tell, but there are many cfs/me people who have major sleep issues and have never had any treatment for this. I think what ever infection etc causes this illness, it depends where it hits us, for you and me it hits us in the brain where sleep is regulated. If you google around u can find other examples of infections causing chronic sleep issues. I cant remember all the details but im sure i read that in the early 1900s an infection through europe caused people to lose their ability to sleep and some were known to die from this inability to sleep, maybe it was something else but insomnia wouldnt have helped??

    I wonder if there was a pill that could give us 8hrs quality reperative sleep if we could recover, i know it would help??

    cheers!!!
     
  16. Nielk

    Nielk

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    Hi Heapsreal,

    Yes, my brain is definitely affected. When I was at the beginning stages of my illness and couldn't sleep, my doctor sent me for a sleep study. It showed that I had a lot of Alpha wave intrusions and this keeps waking one up. It also prevents you from going into the the deep stage sleep cycles.
     
  17. Nielk

    Nielk

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    Has anyone tried Suboxone to help with tapering off Klonopin?
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Sounds like me and my sleep study, because i didnt have sleep apnea they werent really interested.

    cheers!!!
     
  19. Ocean

    Ocean Senior Member

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    I agree, many doctors give out prescriptions like candy. And often they don't really warn of the potential issues like side effects, long-term damage, and withdrawal. I've had numerous treatments and medicines that caused me new problems I was never warned about. And doctors continue to offer me some of those same meds with no warnings about them and sometimes offer them even after I tell them my past issues with those meds.

    Do the slow taper protocols that some suggested on this thread sound feasible to you at all? I've gone through withdrawals and tapers in the past and have been on meds that cause physical dependency, and I can relate to some of the feelings, even if I don't have the experience with klonopin. I really feel for you and anyone in this situation. I've felt similarly trapped at times with ambien but that is much easier to withdraw from I think. I hope you will find an answer that works for you.
     
  20. Ocean

    Ocean Senior Member

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    I've not done it but here's a thread on it elsewhere regarding suboxone and benzo tapers that seems to warn against it. I can't remember if I searched for the link or saw it posted on this site.

    http://www.benzodetoxrecovery.com/topic.asp?TOPIC_ID=1253


    Personally I would try to not use a drug that causes dependence to wean off another because you'll then I'd have to wean off the second drug too. But I really don't know enough about tapering off benzos specifically.
     

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