The Nightmare of Benzodiazepine Withdrawal

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Benzo withdrawal
Over four years ago I became ill with what was later diagnosed as Sphincter of Oddi Dysfunction (SOD), a rare defect of the biliary and pancreatic sphincters. I couldn’t keep food down for weeks on end and ended up in the emergency room and hospital several times. There, I was prescribed a low dose of a benzodiazepine (benzo) called lorezapam (generic for Ativan) in combination with an anti-nausea drug called ondansetron (generic for Zofran). The combination of these medications nearly cured the vomiting with the added bonus that I had something to take for the crippling anxiety I had due to chronic illness. Since I have been in recovery for nearly two decades, I was very concerned about the addictive qualities of benzodiazepines. A doctor, I can’t remember which one, changed my prescription to a longer acting benzo called clonazepam (generic for Klonopin). He or she promised me it was a benign drug and I had nothing to worry about. That ended up being a bold-faced lie. This drug, and all benzos, are anything but benign.

I thought I was doing okay on the medication. I didn’t get “high”. I never abused them or wanted to abuse them. Gradually, though, I began to develop a lot of weird symptoms, but I chalked them up to the SOD. By 2012, I was on a feeding tube, intravenous nutrition, and had acute pancreatitis, major abdominal surgery and two sepsis infections that landed me in ICU. During the second bout of sepsis I was given intravenous bags of a fluoroquinolone antibiotic called Levaquin, and subsequently, had a severe adverse reaction. The Levaquin rattled my nervous system and attacked my tendons. I later found out that fluoroquinolones are contraindicated in patients prescribed benzos. By late 2013 I was a sick mess from the never-ending fluoroquinolone toxicity symptoms and was experiencing what I later learned to be inter-dose withdrawal and tolerance issues from the benzodiazepines.

Benzodiazepine Dependence Versus Addiction

Before I talk about the horrendous withdrawal nightmare I went through, you must know there is a difference between physical dependence and addiction. The majority of people I have met coming off benzos are not addicted to their benzo like an addict seeking more and more, abusing them, and/or getting them illegally. Conversely, the majority who are prescribed benzodiazepines become physically chained to the medication to the point their bodies don’t know how to function without them. Your body can become significantly dependent on a drug, even those that are not controlled substances. This can happen with anti-depressants, anti-psychotics, and seemingly innocent blood pressure and cholesterol medications. I have been down this road with anti-depressants. I must be an ultra-sensitive person because anytime I tried to go off a medication—any medication—I had to taper slowly. All that being said, this is not an article about benzo addiction and, quite frankly, many rehabs mistakenly treat benzo-dependent individuals as addicts when they are not.

Why people become physically dependent on benzodiazepines has something to do with its effect on the neurotransmitter gamma-aminobutyric acid (GABA). Benzos bind to these receptors, creating a sedating, hypnotic, and anti-anxiolytic affect. Doctors are prescribing benzos more and more for off label purposes like inner ear disorders, nausea, bladder and pelvic disorders, and fibromyalgia and for long-term use. This practice is concerning as it is well-established in pharmacological literature that benzos are to be used short-term (less than 4 weeks) or only on occasion. The long term use of benzos and their effect on our bodies has not been well-researched. I had to learn about it all through other benzo users online.

My Benzodiazepine Withdrawal Nightmare

In September 2014 I decided I wanted to taper off the clonazepam. I had been on the same dose (two pills a day at the lowest dose they make) for three years. I was terrified the vomiting and disabling anxiety would return but I had a gut feeling I didn’t need them anymore and would be ok without them. I remembered a few people in my health support groups shared how they had a horrible time coming off benzos and recommended a support site called Benzo Buddies. Naively, I ignored their suggestion and went about my taper all wrong. How hard could it be?

I followed no set pattern. I chipped away at pills and dropped down to one dose a day which I learned the hard way was very bad because clonazepam’s pharmacological duration of action was 6-12 hours, meaning I didn’t have a steady amount in my system at some points of the day. This caused withdrawal symptoms because it is something called interdose withdrawal. During the first few months of my taper I experienced an increase in my body wide nerve pain I had had from the fluoroquinolone. Strangely, my teeth hurt terribly and never let up. I thought I needed root canals but when I got them it made the pain worse. Dentists could not explain the severe pain as x-rays were normal. I had a tooth pulled and now regret it, but the pain had been unrelenting. I had frequent urination and pelvic pain. By February 2015, five months after I began my taper, I started having severe pancreatic pain attacks. I thought it was my SOD popping up again but I had surgery for that. I didn’t think it had to do with the benzo. Months later I realized the pain subsided for a few hours after my daily clonazepam dose then resumed when the benzo wore off.

I continued to chip away. I had anxiety but the worst was that pancreatic pain. I finally relented and joined the Benzo Buddies forum and met several other people who developed pancreatic issues during a benzo taper or withdrawal. By July 2015 I decided I was to be done with this drug and completely stopped. I was only taking specks by this time but even the specks seemed to keep me from a lot of nasty symptoms. The weekend I stopped completely, my husband and I went to NYC for a recovery convention. I had vertigo so severe I felt like I was on a boat during the entire trip. I was nauseous, my ears rang loud, muscles ached, and of course my pancreas was worse than ever. I was in rough shape for the next 6 weeks. I did start to feel better but soon was plagued with panic attacks the likes I’d never experienced. I woke up every night at 3:00 a.m. drenched in sweat, in terror. Adrenaline surged through my veins.

I called the doctor. She said I had to go back on a benzodiazepine temporarily. I complied and took a very small amount once a day for a few weeks. My pancreatic symptoms flared to the point I nearly stroked out as the pain caused my blood pressure to double. I had to get off the medication again so I stopped cold turkey. After all, why on earth would I have to taper again? Well, I should have tapered because what happened to me is called kindling. Kindling (withdrawing multiple times) can cause a hypersensitization of the receptor systems and thus causing the nervous system to be hypersensitive. What ensued was a horror show.

The Hypochondriac Disease

Benzodiazepine withdrawal should be called the Hypochondriac Disease. You will feel like you are dying and so many things are wrong but most tests will show nothing is wrong with you, leading your doctors to believe you are crazy. I felt like I was having mini-seizures for an entire month. For several months I had severe thirst and electrolyte imbalances, erratic blood pressure, sweats, chills, nausea, dizziness, near blackouts/seizures, vertigo/boaty feeling, metallic taste, eye pressure and pain, pancreatic pain and damage (by October 2015 an endoscopic ultrasound showed I had damage and was diagnosed with chronic pancreatitis), bad bloat and gas (aka benzo belly), ear fullness/popping, weird stools, constipation alternating with loose yellow stools, food sensitivities, brain fog, depersonalization/derealization, inner vibrations, exercise intolerance, sinus pain that felt like brain freeze, complete intolerance to stress and overstimulation; blood sugars were either very high or very low (I am not diabetic). I pretty much felt like I had the flu every day. At about the three-month mark the fatigue set in. The fatigue was unlike anything I had ever experienced. I was bedridden a lot. I was so tired I didn’t want to drive and could barely take care of my 4-year-old son.  I never seemed to catch a break. When one symptom resolved another would pop up.

My doctors were useless as none believed that benzodiazepine withdrawal caused all of these symptoms or that it could last for months (for some people years). I had already gone down this road with them for the SOD and the fluoroquinolone toxicity I can’t blame them for being perplexed. I am here to say it is real and should be considered as a diagnosis for any mystery ailments. I have tried to warn others but it is difficult to convince anyone how horrible these medications are when they experience a “wonder drug” effect from them.

Feeling Better! There is Hope.

It has been nearly seven months and I am feeling much better. I started having “windows”–feeling normal–and “waves”–intense symptoms. That is actually a good sign that I am healing. I am down to only a few symptoms. Not everyone has the experience I had. Some go off and on benzos no problem. For some of us withdrawal is a painful syndrome that cannot be resolved with a quick cold turkey or month-long stay in rehab. Some are quite ill for years. This is not like opioid, alcohol, or any other type of drug withdrawal. It’s just not that easy and my hope is doctors learn from their patients.

Even if you have successfully and easily gone off them in the past, I strongly suggest anyone who wants to taper off go to the Benzo Buddies site and read the various methods of tapering. Educate yourself. The most common taper method is the Ashton Protocol. Dr. Ashton ran a benzo withdrawal clinic in the U.K. and has probably done the most research of anyone on benzos and how to safely get off them. Always talk to your doctors about the risks of any drugs before agreeing to leave their office with a prescription. I never thought a legally prescribed medication could do this to my body. I now have a medic alert bracelet that states I am allergic to fluoroquinolone antibiotics and benzodiazepines.

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This article was published originally on Hormones Matter on April 25, 2016. 

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45 Comments

  1. Brooke Keefer, I saw your article as I was searching for something on the internet 🙂 Let me tell you what! I was prescribed 3 mg of Klonopin, daily, and it almost killed me. I was sideswiped by a tractor trailor coming home from Philadelphia. This is shortly after beginning this prescription. A neurologist did not think that I had sleep apnea, and due to this incredible lack of REM sleep, he felt the Klonopin was necessary.
    Zipping up to 2016, I was losing so much memory, especially short-term, my current neurologist agreed to have me see a neuro psychologist to have an IQ test done. I was flabbergasted! I lost ~40 IQ points from the last time I was tested for a company position back in 1988. Due to this kind and intelligent neurologist, I spent approximately 1 1/2 tapering and failing so many times until I finally made it. Shortly thereafter, I began to have a flood of memories come back, along with a working short-term memory. There are still short spans of time that I can’t remember anything. Thankfully, my wife can fill in the details 🙂

    Since I had spent ~39 years as a sufferer of Cluster headaches, I can testify that the combination of Klonopin and opioids is an incredibly dangerous combination. Oxygen has been a God-send for the therapy of Cluster headache.

    In closing, for anyone addicted to Klonopin or it’s relatives, be insistent that your doctor assist you in anyway possible to drop this drug from your list of medications, unless you absolutely HAVE to take this drug. Good luck to anyone fighting the addiction to this nasty chemical.

  2. Brooke

    Inspiring story Brooke! I am a 66 yr old military vet with PTSD trying to come off of clonazepam. I am so glad you wrote about it. I am suffering through a taper now. Psychiatrists are trying to get me on antidepressants, which make me suffer worse. Several of the symptoms you had I have had. Horrible!! I have felt like I was going to die over and over. The fatigue, the weak and aching muscles, I am losing weight and scared. I am going to see dietitians and doctors to try to get my life back. I am grateful that you wrote this story. More later. I have an appointment in a couple of hours with a counselor.

    Did you take any vitamins during this time. I had read that clonazepam depletes many of them. I am trying to ease the withdrawal. It is not easy. Having trouble sleeping and coping during the day. More later.

    Arthur Grimes

  3. You should put in a title or keyword that leads here “pancreatitis but not pancreatits.”. Four visits to the ER, took all 4 visits in 24 hours to figure it out. Not sure if I ‘m cured. Light as a feather, but pain coming back. They insisted I was just drug seeking.

  4. Hi Brooke,

    Your article exactly describes all of my symptoms. It’s a living nightmare nobody understand. I am currently 10.5 months off after only 2 months use of diazepam and symptoms increase in intensity. Can someone relate to this? Symptoms return on and off with a small break here and there . I don’t see doctors anymore, because they don’t help me. I do read stories about a breakthrough, but in my case symptoms only increase. Do you have any advice?
    For example the extreme nerve pain and night terrors came back tonight after so long, but than x3. I don’t know what to do anymore….. I feel mentally and physically ill. Thanks!

  5. Dear Brooke, How does hormonesmatter.com relate to your story? I’d love to share your story as I relate to it. I am in benzo withdrawal at the moment, almost at the end of my taper. As you are also asking to support this project I would like to understand a little bit better. Forgive me if my question seems stupid…. benzo withdrawal does that to ones brain ;-)…
    Do they try to show through trials that benzo’s are causing us to be in hell?

  6. Hi Brooke, glad you are feeling better. I know how this feels.

    I was on Rivotril, which is also clonazepam, though branded in Europe under a different name as an anti epileptic seizure drug. Exact same drug, produced and sold by the same company (Roche Pharmaceuticals – the makers of Klonopin and Rivotril) though in different countries and targeting different ‘diseases’. That is the way they do it.

    Prescribed to me for nightly jaw clenching causing a sleep disorder (as I was later able to tell was just caused by life’s stress in my life at the time). I also was told it was a harmless drug to take for long periods in a low dosage. It immediately ‘cured’ my sleeping disorder, and I got automated three month repeat prescriptions for seven (!) years until I started to question the drug an my habit of taking them.

    Not wanting to go back to my sleeping problems I kept taking them all this time. This addiction creeps up from behind fast without you having the knowledge you need to know what is going on. Literally before you know it you are living a strange life. Time goes by very fast in this life you then lead. You function, but at a survival level. Not evolving, learning and growing. You flatline in development caused by true and subtile emotion blockage.

    I took 0.5 mg of clonazepam every night- which seems as a low dosage, but which I learned is as potent as 10mg of diazepam (Valium). You operate, but you are literally sedated. Not getting the full experience of life you need to make the right choices. Which is a horrific thing looking back. I missed a lot. I was 28 to 35 years old at the time. I am now 48 and I don’t like to dwell over this too much; better to look ahead I have always said. But I had to react here; for it is an outrage this is still going on.

    The benzo sales cycle is a dream for any (drug) selling party.. Both my family physician and a neurologist told me at the time it was a safe drug. It is not obviously; it is highly addictive (known since the 60s), so from a business point of view it is a market structure made in heaven: highly addictive, sold as safe to take daily, and the medical community substantiating this sales cycle that is by no means anything less then drug trafficking, street selling and abuse we know from the news.

    It is a very cruel cycle for patients that loose a lot of life quality over a company’s profit. I am sure there are plenty situations in which a benzo can help- even long term if is a better choice of two bad options. But the majority though seems subdued to a shekel of a solid and successful profit scheme. It is like you Brooke are describing as the “The Hypochondriac Disease”. No one understands/believes you; it is too diverse, complex and strange. Any of your symptoms could have any number of causes. Great for lawyers obviously. Any litigation against a benzo pharma-manufacturer is therefore without chance.

    It took me a year to taper down and get off this terrible stuff. It was indeed not a pleasant experience. I am an average person and have no history of mental problems or or any substance abuse. It is hard to describe what happens when your nerve system is off while withdrawing from a benzodiazepine. It is a holistic physical experience but also with direct mental effects. It is different for everyone I am sure. And it is a very lonely path, because it is very difficult to relate to from the sideline.

    It is very strange. I remember it felt at times I was connected to a power socket; constant electricity in your body. And seizures of extreme anxiety caused by so much as the passing of a truck outside that I could only soften by drink half a bottle of wine. As said; it is hard to describe. Your receptors are open and your body is not producing your natural sedative because it was added by pills all those years. It is really something else folks. The first ‘windows’ of true feelings are a revelation during advanced withdrawal and tell you what you have missed while on this stuff.

    Looking back I feel abused by the dividend impulse of a pharmaceutical company, and I’ll tell you why. Nothing against a profit and the way a public company is structured. But it is overly apparent that if a company is not curbed by us the public through our representative bodies it will construct and uphold these highly profitable schemes no matter what. Public global (pharmaceutical) companies, through their structure of millions of shareholder-owners all wanting to profit, have no moral code or public responsibility and are difficult to control. But we need to control them.

    When I picked up my first Rivotril prescription at my pharmacy (long before times of mobile internet) I checked the drug in the ‘book of all drugs’ they had laying at the counter. Both in that book and in the accompanying leaflet there was no mention of any addictiveness of Rivotril, while, as I learned later, it was known at the time for over twenty years all benzo’s are highly addictive. The reason they left it out deliberately was because they now sold the drug (that was originally sold in the US as “Klonapin” as a sedative used to treat anxiety problems) in Europe as “Rivotril” for a daily taken prevention of epileptic seizures. I am sure some manager decided it was better to leave the addictive bit out for this would be bad for business. At the same time the company’s sales people promoted the drug for a much wider range of ‘diseases’ (not at all related to epilepsy) that might have the need or option to ease the nerve stimulus: obviously an enormous market.

    I know for a fact that if the addictiveness was listed with this drug at the time (it is present day) I would not have started taking it. This in turn would have given my life a different turn I am sure for the effect of taking this drug for so long has been a serious diversion. Impossible to proof though.

    So there you have it: a business decision made to profit directly negatively affecting a life. This of course happens every day but it should be seriously controlled by us in the pharmaceutical sphere- for the effects on people’s lives are too big and painful. This should be stopped for the simple reason prescription drugs are to improve people’s lives, not the other way around.

  7. I think it is very strange when I hear stories like this. I was on clonazepam (higher doses) for nearly seven years for extreme anxiety and panic attacks. I was worried about the dependence and possible addiction for taking them for so long, so over a three month period, I tapered off the medication. Through out this time, and the time following after I completely stopped the medication, I never had any mental or physical withdrawal symptoms. Most of the stories I read from people slowing down and stopping the medication, did not taper off correctly. They would cut down the dosage to quickly and not give enough time between switching the dosage. I realize that every person is different, however people I know from both friends and family, who have tapered off medications (benzodiazepines and pain killers) never have faced symptoms of withdrawal. After talking to a doctor, he stated that the biggest mistake is cutting the first dosage by to much, as well as eliminating the dosing schedule to taper off. For instance if you are taking 1mg 2x a day, it is better to keep with your schedule taking 2x a day, but decreasing the amount, rather than decreasing from 1mg 2x a day and then cutting down to 1mg 1x a day. Majority of stories I read from people who face withdrawal symptoms come from the mistake of doing the latter. Again I realize everyone is different. I feel that the biggest problem comes from not tapering correctly.

    1. Dear Johnathan,

      So you think that you, and others like you, simply taper properly .The rest of us a doing it all wrong?

      Why did you not have a private hell? Luck, that’s how. Please do not give yourself credit and admonish me
      Forgive me , Johnathan , this is not directed at you personally, rather the assumption that” you and your ilk are right “…the rest of us Wrong. I find it insulting. How do intelligent people get it so wrong.?? Perhaps you did not do the research needed to weigh in with such a blanket statement. Unfortunately there are many out there who actually think “luck” has nothing to do with my journey through hell.

      Perhaps you should do the research to back up that opinion
      I speak for myself, only ,when I say “you may be still Delusional..

      I am insulted at the dismissiveness of that thought. Think about it ,Johnathan, how do you think that makes me feel? It all about the TAPER, EH? Your way was correct, and my way, wrong.

      I speak for myself Only, Johnathan, when I say ” your still in withdrawal and Delusional”

      There is NO rhyme or reason, no right or wrong in the way I live my withdrawal” It is a lonely place to be”, and takes great courage to fight this demon and win. I am a recovering alcoholic , sober 30 years. Do you honestly believe there , is a right way and a wrong way that decides the outcome of this journey?
      Please !
      I am one of those who had a pretty easy withdrawal, also LUCKY!
      I did not use Klonopin recreationally. I was one who was Blindsided to find a sript my DOCTOR gave me, for Restless Leg Syndrome, would leave me physically addicted. This drug changes lives, an not for the good, except we come out of it STRONGER. What a hell to go through for that. I could say exactly what you said except I did not TAPER properly .
      Johnathan feel good that you were one of the Lucky ones,,……But I did not ask for this at 66years old, I did Everything wrong , while detoxing ,it was an LSD trip., but my sanity is slowly returning and I thank GOD!

      I Know what addiction is and know only an “alcoholic can understand an alcoholic”, same as Benzo addiction. Yay for you !
      You and your ilk cannot believe there are those out there that struggle for years.

      Sorry for the rant, not directed at you, personally, just used you post to vent

    2. Congrats to you! You’re the FIRST & ONLY person that I’ve heard of (during the past 14 months of utter TORTURE….. HELL….. that I’ve been going through) that hasn’t suffered like the rest of us. I’ve sat in my own little corner, in my own little chair & have spent hours & hours & hours pouring over every single article about, & read every single post from others about, benzo withdrawal. And I’ve NEVER, up until your post, read anything by anyone in benzo withdrawal (tons of people who’ve tapered way more slowly than you) who haven’t experienced an unimaginable…… PRIMAL suffering. It’s probably best if someone like you doesn’t try to give the rest of us “unlucky ones” advice.

  8. I’ve been on Clonazepam (2mg) for over a year now due to REM Sleep Disorder in which I act out my dreams. Both Clonazepam & Melatonin have proven effective in treating this problem For the past few months, I along with my wife have noticed my irritability, moodiness, and impatience. Four nights ago I determined to taper off the Clonazepam and transition to Melatonin. It’s been nearly 96 hours since I switched from 2mg of Clonazepam to 1mg. I’m also taking 4mg of Melatonin. I’ve only experienced some mild nausea, a little light headedness, and difficulty sleeping, but nothing horrific yet. I visited my Sleep Disorder Physician yesterday, he counseled me to continue with the 1mg Clonazepam and 4mg Melotonin for one month, then return for another appointment. He had no problem with my actions; and explained to me that those who experience major withdrawal symptoms with Clonazepam are taking much higher doses than 2mg (which he stated was a low dose). We shall see! After four days I am already feeling better emotionally and mentally. I had no anxiety issues when I began taking Clonazepam, and still have no anxiety issues.

  9. I am 7 days now w no klonopin. I feel miserable but I’m not going back. I have so many terrible symptoms but the worst feeling is that it’s like no one around me understands. I’m married and have 3 young kids. I feel like a huge burden and like I can’t do anything. My mind and energy are gone. My head hurts, my stomach has sharp pains, I’m nauseas, I sweat at night and wake up several times throughout the night. I have muscle twitches and body aches. I feel completely useless. I began on these meds during my first major panic attack after having my third child. I had never had anxiety before that. They gave me a mg of Ativan at the ER and said to take “as needed”. I asked the doctor what that meant and she said that when I felt anxiety that i should take one. So I did and i became dependent due to rebound anxiety. I switched to klonopin so my body could have a more evened out benzo w a bigger half life but it still sucks so much withdrawing! It’s the HARDEST thing I’ve ever done in my life. Harder than earning a master’s or giving birth. The only thing that gets me through other than my faith is reading through forums like this w ppl who have experienced this giving their stories. I cry when I read them because I understand and wish I had someone who understood as well. I’m not putting this in my body again no matter how hard it gets. God bless you all.

    1. Hi Krista,
      How are you doing now? I was put on Ativan before my parathyroid surgery this year in May. I am going on my 4th day of no Ativan. This is my second time withdrawing. I found a program that helps with the withdrawal symptoms when coming off the drug. I think it’s helping. Anyways I wanted to check to see how you’re doing? I really hope and pray you’re better. God Bless you!
      Shauna

  10. Brooke, I would like to know more about benzos and pancreatitis. I hope you still look at this board. Wull you respond to my email address or here?

  11. Wow, sorry to hear you went through that. I had many of those problems from taking a fluoroquinolone antibiotic called Levaquin in conjunction with benzos, NSAIDs, proton pump inhibitors and several other drugs as well, all of which are not supposed to be taken in conjunction with FQs. Doctors are generally just clueless pill peddlers and Cipro is the other FQ they hand out hundreds of times too often. For some reason beyond the comprehension level of my pharmaceuticaly damaged mind, the people who took FQs and benzos together got hit extra hard. I just wanted to convey my empathy for your suffering and to warn others about FQs. I suggest everyone google it and follow where it goes; you need to know this! Best wishes!

  12. Thank you, Brooke for your article. My husband tapered off Klonopin for two years. He’s been taking it for almost 14 years for social anxiety. He totally came off of it a little over three months ago. It’s been a living hell for him. Neither of us was prepared for the withdrawal symptoms that would come. We both figured since he tapered so slowly, he would be fine. We were so wrong. He is having some windows, but mostly waves right now. I’m hoping that he can sleep soon. I feel like if he could sleep, some of the symptoms would lessen. We’ve been to three doctors. They’ve ruled out any other underlying sicknesses. We’re seeing a neurologist tomorrow, but are also going to go to a natural doctor since normal doctors don’t seem to have a clue about the withdrawal from these substances.

    I know we are in this for years. I’ve just been repeating to my husband that he is healing. He will not feel like this forever. What else can I do to help him? I wish there was more I could do. It’s hard when he becomes manic, but I think we’ve somewhat worked through what has been going on when that happens and how to handle them. He asked me to just reach out and grab his hand and talk to him quietly even though he is verbally saying things that hurt me (not in a horrible way, but almost accusing me of not doing enough, even though he knows I am doing as much as I possibly can. He said that he is frustrated with himself for not being able to do more, and when he gets manic, he almost puts those things off on me that I’m not doing them).

    I do feel like I’m helping a newborn in a sense. I’m waking up with him at night and trying to talk him through the terror/anxiety. We’ve been listening to calm music at night, massaging his feet and body, doing aromatherapy. We’re trying to stay away from medicine, even some natural since even some of those can trigger symptoms.

    I wish the public knew about these drugs and the effects and that even though these drugs have been on the market for so many years, mental health disorders have sky-rocketed. They’re not helping!!! You will hit tolerance and either be forced to take more, further damaging your brain, or taper off and think that you are going crazy (as well as everyone around you who doesn’t know what’s going on thinking you are crazy). I wish we had a voice.

    1. Have you researched anti-seizure medications such as Oxcarbazepine or Gabapentin? They have been shown to be very effective at tamping down benzodiazepine withdrawal symptoms in many cases and they are non-addictive drugs. I was prescribed Gabapentin in a withdrawal facility and it effectively wiped out all of my physical withdrawal symptoms even as I withdrew rapidly from a titanic dose of Valium (100 mg/day). In two months I was completely off of the Valium without any of the horrifying symptoms that I had expected to experience. My anxiety soared, but it was manageable compared to the sweats, vomiting, chills, nerve pain etc. that I had experienced before.

      Apparently, anti-seizure meds work by attaching to parts of the GABA receptors that are not exhausted from benzo abuse and prevent the receptors from going wild when the benzos are stripped away, and the receptors can slowly recover their functioning. I also believe the physical numbing effect of Gabapentin helped me not feel any nerve pain.

      1. Unfortunately what you are saying is not totally a fact. It worked for you, but I know many people who suffer extra from the Gabapentin and also developed withdrawal syndrome getting of Gabapentin. Maybe you have been one of the lucky ones, getting of Valium relatively easy with the Gabapentin. If this would work for everybody we would recommend it to all, but it is trial and error to see what works for every individual.
        Just responding so people realise this… we are suffering enough as it is in benzo withdrawal

    2. You are doing great right now, bless you. Best you can do is just be there for him, one day at a time. Day by day he is busy healing, no doubt. My Mom tapered off Lorazepam after 30 years use, i.ve seen some crazy stuff… She’s now tapering off Clonazepam, and should be done a year from now, slicing 0.125 mg/month. Looking forward to see her get her health back, i can see the improvement already!! Be strong and have faith, it will happen.

  13. I have reviewed alot of info , im guessing on things ,but after i eat/drink pop i feel very bloated the last few days and it triggers a panic attack then its a snowball effect for awhile .. can this because i switched from clozapans to xanax because around the same time i started feeling this way which has been about a week ago.. please respond any info.will help

  14. Hi!!!
    Mine month and still holding on. The worst part os to awaken in the morning and feeling sick!! Its like a voice telling you: “Hey!!! wake up, but remember you are still on the horrible withdrawl process” I dream of the day I will be able to wake up and not hear the voice!!! Does anyone know when the morning nauseas go away, or do all symptoms fade away together?
    Thank you for sharing with me!!!
    María

  15. I feel like driving more car threw the front doors of the pharma company and beating everyone’s brains in there it has been 3/12 years I am still going threw this crap are goverments need to week the hell up I am still going threw leg cramps abdomen pain back pain intrusive thoughts shakes numbness in hands and feet numbness in as preasure headaches I have been chea led almost for everything I now am on testostrone replacment because my body can’t produce on its on any more I can’t take antibiotics because it make me really sick , well at least the huluainations have stopped but the ringing that danm ringing is like a air raid cyron when will this end I am Ben I was on 2 , 2 mg of clonazapam a day for 6 years that my dumb ass doc did not take me off , like really what is wrong with these people poisoning us with this crap really it has been 3/12 danm years and just when I think I am better bam to the face anouther wave I am so sick of this time to fight fire with fire , maybe if some did drive threw the front door of those places there might be some attention shinned on all of this like what am I going to do I can’t do this anymore over three years and I am still getting waves and I have been to the docs to get checked up on brain stuff sicknesses and keep going back thinking this tool will find something because I feel like this please any insight of how long this will take any body at the three year mark going threw waves still please I need answers

    1. I have made it through and am on the other side .. Oh Dear God, I have NEVER in my lifetime been through anything like that Benzo withdrawal . What a horrible nightmare . I never thought the anxiety and depression would go away . I had brain zaps, fatigue, unbelievable ANXIETY, fear, depression, I was afraid Of my own children. I had horrid nightmares, all relating to death, either death of me or me killing something. I spent 90% of my day and night curled up in my bed. My husband even had to take me to work because I was so scared to be alone. I was afraid to brush my own hair, I had long hair and just laying on it at night made me horribly anxious, I felt like it was strangling me, so I went and had it all chopped off . I cannot believe how these doctors can put people on this toxic drug and not know a thing about it especially how hard it is to get off . I was put on it because I had some stomach surgery and was a little anxious one night because I thought my stomach was healing wrong. My husband took me to the ER to have my stitches looked at. Well 6 hours later the doctor walked into the room and had me take a pill ( Ativan 1 mg. ) .
      I had no idea what I was taking. He told me to take 3 a day and to follow up with my doctor, who by then had to write me out another months supply to start weaning me off of them with Zoloft and cutting back the Ativan . I immediately started researching what the heck I was taking and how dangerous it was, I jumped off cold turkey for two days and about went crazy .. I was so scared of how I was feeling . I truly felt like I wasn’t in my body any more. I wanted to die to make the pain and fear and horror go away. I was so terrified ! So I went back on them taking my own doses. One day 2 mg. Then next day .25 mg. The next day 3 mg. The next .75, 1.25, 3 mg. I was so out of my head not knowing what I was doing .. after 4 months my husband took me into a rehab hospital which a bunch of junkies, (mind you I’m a mother of 5 and never took even aspirin ) !!
      I was so horrified .. they took me off everything and put me on MEGA doses of Phenabarbitol for 3 days. I completely lost track of time, days, I even lost my identity . All they wanted to do was give me an assortment of pills that I kept refusing . I was a prisoner behind locked doors. I did everything I was told in there to get released. After I got home I was completely drug free and felt so good .. little did I know that all hell was getting ready to break loose . I have never been so sick in my life . I was dying.. I screamed and begged God to please help me or kill me. The horrible anxiety and depression were the worst . I was so afraid . I was pretty much forced to go to classes, see a psychiatrist who diagnosed me with PTSD, put me on Paxil and made me come in for weekly visits . I thought I was losing my mind. I did this for awhile and started feeling better on the little 10 mg. of Paxil. At the same time, I found out I was in the middle of menopause .. I finally went to a hormone doc and she is taking care of me now with herbs and vitamins .. I’m thinking a little clearer these days and enjoying retirement . These drugs should be banned !!!
      What a NIGHTMARE .. good luck to all who are going through this .. you WILL get through it . It will pass and you will be a much WISER you when you reach the other side .. all I can do is help people now who are in the middle of this storm .. God Bless and stay very close to God . Pray continuously. He brought me through it . 🙏🏽

      1. Jan, what an awful experience. It’s amazing how I’ve met some people who get over benzos with no problem while others go through hell. I’m so much better but still get brain fog and fatigue, especially after eating. How long was your withdrawal before you felt better? Benzo withdrawal put me into perimenopause.

  16. Sad to hear your traumatic experience. Your terrible experience sounded exactly like my horror story from 2005 till 2007. I quit Paroxetine 20mg and Clonazepam 0.5 cold turkey after taking for almost two years. Then I restarted and then quit. This happened several times over a period of one year as I was totally ignorant then of its terrible side effects. The ensuing terror that unleashed…oh God! Our worst enemy should not suffer from such a condition!

  17. I am glad you see you are doing great Brooke.

    I am 46 yo and was prescribed prn doses of klonipin for many years. I never took it more then prescribed, mostly less. However, I still developed tolerance withdrawal.. It was at that point I did not want to take this med anymore. I tried CT… Failed at day 4… Ended up doing a quick quick taper after being switched from 0.5 mg daily of klonipin (sometimes less) to 4 mg valium. Tapered from 4 mg to 0 in 3 months….The last dose was Feb 3, 2016 (funny how we all remember the last day… such a traumatic experience). It was horrible. I was pretty bad the first few months after but I was steadily getting better… UNTIL..

    I had surgery and was placed on steroids for a short time…. After that I plummeted.
    Fatigue, irritability, cold intolerant, tingling in extremetities, abdomenal pain, lightheadedness
    That was early June and I’m still having issues…. I have the luxury of being hypothyroid and surgically post menopausal (so I’m already having hormone issues). I have been to the ER 3 times… Everything comes back normal.. I swear its my adrenals but ER’s only test for crisis not insufficiency/fatigue. I am back taking propranolol just so I can work. I also take a visteral here and there. Oh…they “think” I have an ulcer/gastritis

    I just need hope that this will improve again.

    1. Thank you for sharing with us, Becky. I am 9 months out and developed a sluggish thyroid and adrenals, and hormonal imbalances. I bet the steroids messed with your already taxed adrenals, another gift of benzo withdrawal. You may want to read a book on adrenal fatigue. Dr. Lam and James Wilson wrote good books on the topic. Endocrinologists are useless for our type of adrenal issues. It’s best to see a functional medicine practitioner or naturopath who can run saliva hormone tests, including one on cortisol. Since I have been taking adrenal and thyroid glandulars, large doses of vitamin c, rhodiola, and ashwagandha as part of my adrenal recovery plan, my fatigue has improved. I am still about 75% but that’s a lot better than 10%. I also had gastric issues during withdrawal. Trust me, if you have normal tests it is likely all from benzo w/d. Oh, and, steroids can temporarily stop your adrenals so then when you come off them the adrenal fatigue is worse.

  18. I had. Y gall bladder out August 1, 1986. I had several flair up over the years but have gotten through them with antacid and changing the diet. But for the last several months I am experiencing sever stomach pain, acid reflex and sever a giant hard bloated stomach and acid reflex. I just recently had a sonogram and everything came back normal except for a abdominal hernia I have when they did laperoscopy trements for infertility treatments. Just went to see a gastro doctor and he wants me to do a Hida scan. Well I am very Leary about radioactive dye injected in the liver area. We only have one liver and if it is toxified we have a lot of serious complications or even die. so please tell me is there any other scan or blood test that may show if the sphincter of oddi is functioning properly? I was told that the Hida scan is like having five x-Rays. Also it is colored dye that is radioactive. This stuff is not good for anyone’s liver and may do serious damage to the liver. Is there any other way to diagnose this condition? I’m in constant pain. So thanks for all you help! Feeling frustrated and down too. Christina

    1. Hi Christina, The gold standard test for SOD is the ERCP with manometry. I encourage you find a doctor from this SOD doctor list: http://www.sodae.org/sod-doctors.html. Many doctors don’t like performing an ERCP as it can bring on acute pancreatitis. Sometimes a hida scan can show delayed emptying which could be from SOD. Unfortunately, most people with SOD have normal test results. I have had several scans–MRI, CT scans, Hida, etc. and worry about the exposure to radiation. However, I honestly have never heard of them damaging the liver. Our liver is rather resilient and can regenerate. Some doctors rely on bloodwork to diagnose SOD. If your liver enzymes and in some cases your pancreatic enzymes are elevatedd, then you could have SOD. It is a difficult disease to diagnose and treat. I am so sorry you are going through this and hope you find some answers.

  19. Thank you for your honesty. I am about 6 weeks from my jump. I was on Clonazepam then Lorazepam almost 5 years. I suffer bipolar disorder so I had issues with my moods in trying to get off. It took me 2 years and one hospitalization. Luckily it didn’t cost my marriage and family as it did someone I knew.

    In the EU it is a controlled substance. I moved to the UK 3 1/2 years ago only to discover how bad it truly is. It is considered and proven to be addictive here. Last year a “study” in the US concluded it was not addictive. I believe the more of us who speak out will help others. We need to get the word out!

    1. You can do it! I know it doesn’t feel like you can get off it most days. Go slow and even. I wish I had followed one of the protocols like Ashton. I have depression and anxiety and stupidly tried to wean from my antidepressant at the same time as the clonazepam. That was a huge mistake. In fact, many of the people I’ve seen online who have to hardest time getting better after a jump are those who also went off their other psych meds or were resistant to trying a psych med. Whatever will help someone through this nightmare should be considered. Once off the benzo for a time then and only then worry about getting off other meds. That is just my experience. Best of luck to you! Please let us know how you make out.

  20. Thank you so much for sharing. I want to withdrawn from years of taking 2 mg Klonopin at night but am beginning to realize I will have to do this under supervision.

    Many years ago I had been taking Methadone for chronic pain and wanted off of it (it is now known that Methadone has a very long half-life and is often the culprit behind accidental overdoses of people taking other drugs that cause sedation). The doctor put me on a schedule that he said would take about 2 1/2 weeks to wean off the drug.

    The reality turned out to be 2 1/2 months. I went through hell. Vomiting, shakes, you name it. And often when I thought I was finally free, these symptoms would return unpredictably for days at a time. Gradually they stopped altogether.

    I think patients should be made aware of what getting off a lot of these drugs is actually like. Not to scare them, but give them the knowledge they need to make an informed decision and seek professional help (real withdrawal experts, not like my doctor) to safely remove these chemicals from our systems.

    1. In the end you will be ok and CAN live without benzos. It definitely has to be under supervision but actually doctors don’t seem to know anything about true benzo withdrawal. They think we can come off them in weeks or a few months. Not so. Arm yourself with as much knowledge as possible about different taper protocols. You will likely have to be the one to educate your doctor on how you need to taper. Do it slower than you’d think. Don’t veer off. Stay the path.

  21. Thank you so much for sharing your story, Brooke. My daughter was floxed a year ago January and has been on benzos for about 11 months. To say it has been a nightmare is such an understatement! Many of your symptoms are familiar and then the feelings of powerlessness and discouragement have been really hard to deal with. Your story and you sharing how you have improved makes me feel more hopeful and I know that others with these same conditions will be encouraged by your story. I am so glad you are healing and admire your strength and appreciate your willingness to advocate as you do. Thank you thank you.

  22. Brook you were so correct in your warnings to me about this stuff and the withdrawals I would go though but especially want to thank you for the warning not to ease off or take some to help as it wouldn’t like when your getting off of Morphine or other narcotics. I think you helped me a lot. Hugs.

    1. Glad you are doing better, Judie. You will continue to feel better and better. It’s amazing because my anxiety is actually BETTER than when I was on a benzo!

  23. Brooke, what an ordeal you’ve been through! Several years ago, I was on benzo’s several months, then fq, and two years later fq again. Just now learning what I went through and why. I’m really interested in your advocay work with children’s mental health. Do you have contact info?

    1. I am not active with children’s mental health advocacy anymore but hope some day to return in a consulting capacity. Currently I run the SOD site, http://www.sodae.org. You can contact me through there at info@sodae.org. The FQs and benzos can produce obvious symptoms or they can be elusive which makes it harder to connect the symptoms to these meds.

      1. Hello… I luckily came upon this site today when trying to understand why I am feeling so nauseated and sick to my stomach (was on 3 mg Klonopin each night for over 10 years; 10 months ago I got off most of it except for .375 mg which I still take each night.) . Had also gotten off Ambien & Tizanadine (all prescribed for sleep) . Will my stomach ever get back to normal? I am too thin, want to eat so I’ll have energy, but can’t eat.) . Does anyone have any advice as to how long this will last? I can barely function or get out of bed & have two kids to raise. Thank you in advance for any replies…

  24. Glad to hear you’re feeling better. I too got floxed and shortly after discontinued all my psychotropic meds including benzos that I had been taking for 25 years. It’s been 13 months since I took the last med and most of that time was horrific. You are correct about it being called hypochondriac disease. I thought I had every ailment because I had so many freakish symptoms and horrible pain, not to mention the psychological symptoms of irrational fear and anxiety. All that and recovering from being floxed was at times very overwhelming. I am just now starting to have windows of hope and health. I am so happy to have left all those drugs behind regardless of the pain I endured. I hope you continue to get well!

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