It’s been a year since I took my last dose of a benzodiazepine. I had shared publicly about my journey off benzodiazepines during my taper (see here and here), and since many have asked me lately how I’m doing, it’s time for an update. In this article, I’ll be discussing my benzodiazepine journey so far and answering some of the common questions I receive from the benzodiazepine-harmed community.
Please understand that everyone has a different journey coming off benzodiazepines. The following is simply my own experience and is not meant to be taken as medical advice. However, I hope that many people can benefit from my story and what I’ve learned along the way.
Beginnings:
In August 2015, I was prescribed Xanax for insomnia caused by the intense pain of dry eye syndrome. Within a few weeks of taking a “low dose” of Xanax (0.25 mg nightly), I developed a tremor and severe anxiety. In hindsight, these symptoms were a result of interdose withdrawal and tolerance. At the time, this was not readily apparent to me or my doctors. I now understand that this lack of insight stemmed from how little training doctors receive related to the adverse effects of benzodiazepines. I spent two fruitless months undergoing evaluation by multiple medical specialists in an attempt to explain my symptoms. Benzodiazepine dependence/interdose withdrawal were not once considered in the differential diagnosis. Meanwhile, I became progressively more ill.
Benzodiazepine dependence/interdose withdrawal were not once considered in the differential diagnosis.
I was encouraged by my doctors to add a dose of Xanax in the daytime hours to alleviate my increasing anxiety. I was prescribed 0.5 mg up to three times daily as needed, and I never exceeded this prescribed dose. When my medical tests came back normal, I turned to the internet in search of help. I entered “Xanax” into the Google search bar, and after sifting through a bunch of drug detox and addiction center websites (none of which seemed to apply to me), I found BenzoBuddies, a support forum for patients withdrawing from benzodiazepines. After reading various threads, I was shocked to find that my symptoms were consistent with benzodiazepine dependence.
I now knew that the only way to get my life back was to find a way to get off Xanax. I tried to taper on my own, but it was impossible—the withdrawal symptoms were simply too severe. On BenzoBuddies, I found the Ashton Manual, a guide for benzodiazepine tapering and withdrawal written by a doctor, Heather Ashton, who had extensive clinical experience with this issue. Ashton recommended switching from the short-acting Xanax to Valium, as its longer half-life eases symptoms of interdose withdrawal and facilitates tapering.
Despite the fact that I’m a physician myself, when I went back to my providers with this information, I was dismissed outright.
Despite the fact that I’m a physician myself, when I went back to my providers with this information, I was dismissed outright. One told me (wrongly) that I didn’t need to taper off Xanax at all and could simply stop taking it, since I’d been on it only a few weeks. Another implied that I was an addict, which was untrue. Please note that physical dependence and addiction are not synonymous, and appropriate use of this language matters.
By this time, I was very ill and knew I was in deep trouble if I didn’t receive help soon. After a month-long search, I found a local psychiatrist who believed me. Over a period of six weeks, he helped me “cross over” from Xanax to Valium. I eventually stabilized on 15 mg of Valium, and my symptoms of interdose withdrawal were relieved.
The Taper:
When I started my Valium taper on December 27, 2015, I had no idea that it would be a multi-year process. My psychiatrist and I decided to start the taper using the schedule in the Ashton Manual, which recommends a traditional “cut and hold” method. My first “cut” (dosage reduction) was 1 mg. This sent me into a tailspin of intolerable symptoms, the worst being tachycardia, chemical terror, and severe nausea. It was readily apparent that the schedule in the manual was simply too fast for my body.
After waiting a month to stabilize from that first reduction, I continued my taper using smaller dosage reductions (0.5 mg), which were better tolerated. I reduced my Valium dose every two weeks as recommended in the manual, but quickly realized that my body needed up to three to four weeks to fully stabilize between reductions.
The first half of my taper, from 15 mg to 7.5 mg, took roughly a year (including my diagnosis of breast cancer in April 2016, which necessitated a total of six months of holding my dose for two separate surgeries). The second half of my taper, from 7.5 mg to 0 mg, took two years and almost three months to complete. This is consistent with psychopharmacologist Malcolm Lader’s observations that the “early stages of withdrawal are easier to tolerate than the later and final stages.” This is likely because, as a taper progresses, any given dose reduction constitutes a larger percentage of the total dose. I found that while using the “cut and hold” method I could make reductions of up to 7% of the total dose. Anything exceeding that percentage was catastrophic for me. (Please note that this amount of reduction was what worked best for my body, and that some individuals must taper even more slowly, while some can go faster.)
Around this halfway mark, I could no longer handle the intensity of symptoms caused by larger dosage reductions. I knew of “microtapering” from BenzoBuddies, but had always found this method intimidating. Still, I knew that the current plan was no longer working, so I began to research microtaper methods. After reading that some people have difficulty transitioning from solid to liquid formulations, and because I had access to a lab grade scale, I decided that the “dry” or scale method would be my best option. I knew that I was sensitive to medication changes, and that liquid would introduce a new variable into the equation, potentially destabilizing me further. (Please note that I know many people who have been successful with liquid microtaper methods, and that this was simply the choice I made in my own journey.)
Dry microtapering entailed a learning curve, required some math, and was more time consuming than splitting pills, but I picked it up pretty quickly. It smoothed out my tapering experience overall, as I was no longer hit with the full intensity of symptoms that result from the “cut and hold” method. I’ve seen microtapering described as going down a slide versus taking the stairs, and that’s a fair comparison. It wasn’t perfect. My slide had quite a few bumps, when symptoms would pile up as micro-cuts compounded upon themselves. When this happened, I’d slow down the rate of reduction or even hold my dose for a couple of weeks if things were really bad. After much trial and error, I found that reducing my Valium by 0.25 mg to 0.3 mg a month was a comfortable schedule for me.
Despite my slow taper, it was, overall, a nightmare from beginning to end.
Despite my slow taper, it was, overall, a nightmare from beginning to end. Some people tend to improve as they taper lower, but that wasn’t true for me (although some individual symptoms like nausea and blunted personality improved as my taper progressed). It was obvious that I needed to continue making dosage reductions in order to get off the drug, so I tapered as fast as I was able while trying to maintain some level of function in my daily life. Although holding my dose periodically helped me reach a degree of stability, I never once felt well during my taper. My “good” days would be considered really bad by normal standards. I would never be symptom free or feel even remotely good until I was off Valium.
I suffered seventy-nine different symptoms, these being the ones I bothered to document on my Twitter account. I won’t rehash them here, but they may be worth a read for those who need validation of their own experience. Suffice to say, I was seriously ill to the point that my family thought I might die. My entire life was upended and, especially in the latter part of my taper, I spent a lot of time bedbound and isolated in my room. I was so severely disabled by the end of my taper that it became difficult to tend to my basic needs like showering, dressing, and cooking.
It was a relentless, 24/7 torture that defies description.
The worst part of benzodiazepine withdrawal wasn’t the intensity and severity of symptoms, it was the fact that the symptoms went on for years. It was a relentless, 24/7 torture that defies description. Every day I wanted to die to escape the torture, but I kept going, holding onto hope that one day I’d be well again. It got to the point where I didn’t care if I died: if I made it, fine, and if not, well at least I was done suffering. I suppose this was my version of radical acceptance. With this attitude, I became an impartial observer to the fiery inferno occurring in my body, ignoring symptoms that would send normal people straight to the emergency room. It’s a strange state of affairs to be trapped in a body with every system imploding and feel no sense of alarm, but this is what was required for me to survive.
End taper and jump:
Below a dose of 2 mg daily, I could feel Valium losing its hold on my body. In fact, under 1 mg, it felt as if I were no longer taking the drug at all, both physically and psychologically. Old and familiar symptoms hit me like a freight train, but now with greater intensity. Symptoms cycled rapidly, and how I was feeling changed on an hour-to-hour, even minute-to-minute basis. At this point in my taper, holding my dose gave me no benefit, so I pushed forward with daily micro-reductions.
When I looked in the mirror, I didn’t recognize myself.
After almost four years on benzodiazepines, my body was a wreck. I was too dizzy and tachycardic to stand for more than a few minutes. My muscles were so spasmed that walking felt like I was trying to move stone. I was so weak that I struggled to transfer wet laundry from the washer to the dryer. I craved carbohydrates, and since food was the only thing that made me feel remotely better, even for a few minutes, I had gained fifty pounds over the course of my taper. I had developed metabolic syndrome and several nutritional deficiencies. When I looked in the mirror, I didn’t recognize myself. Seeing the damage that benzodiazepines had done to me was terrifying.
Three years, two months, and twenty days after my taper started, I “jumped” off Valium at a dose of 0.175 mg. There’s no magic to this numerical value. As I tapered lower, the pill chunk I was filing and weighing became miniscule, and I could no longer handle it from a dexterity standpoint. At that point, I decided I was done.
Three years, two months, and twenty days after my taper started, I “jumped” off Valium at a dose of 0.175 mg.
Ask anyone what Valium dose to “jump” from, and you’ll get a different answer every time. The Ashton Manual recommends 0.5 mg, while some in the benzo-harmed community say to taper all the way to zero, or anywhere in between. Looking back at my own journey, I think that it is best to taper as low as possible, since you are trying to ease the landing, but in my opinion it’s not necessary to drag it out by tapering to zero.
Many people are apprehensive (to put it lightly) about finishing their benzodiazepine taper, and I was too. But in the end, it wasn’t earth-shattering or catastrophic. Stopping Valium at 0.175 mg felt like any other “cut” I’d done during my taper. I had an uptick of symptoms a few days after I jumped, and then again about three to four weeks off. It was more of the same pain that I had dealt with during my taper, so I was more than prepared for how to cope. The second month off was more intense than the first, as I assume this is when Valium completely exited my body.
Many ask me if there’s anything I would have done differently in my taper. With the benefit of hindsight, I would probably start microtapering earlier or even at the outset of my taper, simply because it smoothed out the symptoms. But I don’t think this would have changed my long-term outcome. Overall, I did my best with the challenges this experience threw at me, and I have no regrets about any of the decisions I made during my taper. No matter what method a person chooses for their taper, I cannot emphasize enough that following Ashton’s basic principle of a patient-led, symptom-based approach is the best way to come off benzodiazepines, no matter how long it takes.
The Aftermath:
It was a relief to no longer be required to take the drug that had been poisoning my body. The constant threat of losing my Valium prescription and going into severe withdrawal was now in the past. A year later, I rarely think of Valium, and when I do, I think, “Wow, I really have no interest in taking that at all!” I simply have no need for a benzodiazepine, and it is no longer a part of my life.
I think one of the biggest shocks for people tapering benzodiazepines is that the journey is not over when the taper is complete. The brain and body still have quite a bit of healing left to do, and in my own experience, substantial healing took place only after I was completely off Valium.
I have spent this year recovering and picking up the pieces of my life. With my new primary care physician, I worked on modifying my diet and correcting my abnormal labs. For the first few months, I followed a ketogenic diet. Although I am no longer following a strict keto regimen, I still maintain a diet low in sugar, grains, and processed foods. So far I’ve lost 35 pounds, I no longer have metabolic syndrome, and my lipid profile is trending toward normal. I also started physical therapy a month after my taper ended to aid with my profound weakness and deconditioning. My functional status was so poor at the beginning that, besides the standard parameters, my physical therapist used my ability to do laundry and cook as barometers of my recovery.
My functional status was so poor at the beginning that, besides the standard parameters, my physical therapist used my ability to do laundry and cook as barometers of my recovery.
After two months off Valium, I began to see slow improvements in my overall health and function. The overall trajectory of my illness is continued recovery, but it has not been a linear process. I suffered the pattern of “waves” (increased symptoms) and “windows” (periods of relative stability) typical of post-acute withdrawal syndrome.
Coming off benzodiazepines felt like waking up from the dead, or as if I were Rip van Winkle and had been asleep for years. The first time I went into a grocery store that I had frequented before my illness, I had a surreal deja vu feeling. Suddenly I was seeing everything with fresh eyes, but also tinged with memories of the past. Colors became more vivid. One day while waiting for my daughter’s school day to end, I was struck by the beauty of the garden in front of her school building. I had “seen” it several days a week for the past three years but had been too ill to comprehend it. I began to notice details of the things around me, like the clothing people wear. Let’s just say I found out that my entire wardrobe needed an update!
As I recovered, I began to resume my old activities, but I struggled with cognitive and physical limitations. When I was able to cook again, at first it was hard for me to complete a recipe without a glitch or a full-blown disaster. I kept leaving the flour out of the batter while baking, and this became a running family joke. (Pro tip: Peach cobbler without flour makes a great topping for vanilla ice cream.)
Around four months off Valium, my motivation to complete tasks exceeded my physical abilities. After years of missing out on life, I wanted to take on every project and travel to all the places on my bucket list, but fatigue quickly landed me back in bed. Managing my daily schedule was a challenge. I now had more things on my plate than during my taper, but cognitive impairment made it hard to remember what I was supposed to be doing, and I would frequently forget appointments.
Meanwhile, I began to look more like the old me. Acquaintances from my daughter’s school, who had only known the “benzo sick” me, would do double takes and tell me how good I looked. One even asked me for the secrets of my amazing transformation. But there was no great mystery. I’d been poisoned, and now that the poison was removed, my body was getting back to its normal state.
I’d been poisoned, and now that the poison was removed, my body was getting back to its normal state.
In some ways, being off Valium was frustrating. I was still sick, but there was nothing I could do besides support my body and wait. I could no longer micromanage my taper to moderate symptoms or look forward to the goal of being off benzodiazepines, and this sometimes felt anticlimactic.
I have noticed that benzodiazepine support groups have a wealth of information to support those who are tapering, but tips for managing the post-withdrawal period are scanty at best. For this reason, I’m sharing a list of things that helped me cope during this challenging period. I still use them at a year off:
- I understand that healing is a slow process, so I do my best to be patient with myself. I consider myself a work in progress.
- I do tasks that require relatively more brain power (such as writing) in the morning, before fatigue sets in.
- I use a planner to write down “to do” lists and appointments.
- I set boundaries around things that drain my energy or are triggering. For instance, I limit phone calls and social media. I also try to accomplish work and tasks on the weekdays so I have the weekends to recharge.
- I pace myself with activities, and I give myself permission to rest.
- I remove any unnecessary stress. If I can take something off my plate, I do!
- I start small with projects. After four years of sickness, my house was a disaster and was completely overwhelming to my damaged brain. I couldn’t tackle the project all at once, so I committed myself to getting rid of one item a day. My house is looking better a year later!
- Bad mornings still happen, but I’ve found that getting up and moving forward with my day distracts me from my symptoms, and soon I’m feeling better.
A word on other medications, supplements, and what helped:
People often want to know what they can take to feel better during the taper process. Unfortunately, there is no one-size-fits-all medication and/or supplement regimen that helps with benzodiazepine withdrawal. Taking as little as possible in the way of extraneous substances during a taper is probably best in the interest of lowering the risk of adverse effects and drug interactions. It’s well known that polydrugging can create some serious problems.
With that being said, I wasn’t averse to taking medication to ease specific symptoms during my taper when absolutely needed. For instance, I developed severe acid reflux pain as a side effect of Xanax. It was refractory to antacids and H2 blockers, so I ended up on the proton-pump inhibitor (PPI) pantoprazole for the duration of my taper, and this greatly improved my quality of life in regard to my acid reflux. I did a fair amount of research before I started a PPI and found that they have the potential to increase Valium levels. I specifically chose pantoprazole because it has the least potential for interactions out of all the PPIs.
I also took propranolol, a beta blocker, as needed to ease the tachycardia and heart pounding caused by benzodiazepine withdrawal. In the last third of my taper, I used it on a daily basis to alleviate my cardiac symptoms. Several months after my Valium taper was complete, I was able to taper successfully off both propranolol and pantoprazole. Thankfully, it was much easier than tapering off Valium.
My experience with other medication wasn’t all good. I struggled with insomnia, especially at the beginning of my taper, so my psychiatrist prescribed Remeron. It helped me sleep, but one dose made me feel like a zombie for the next two days. My family also told me it made me angry and irritable. After the Remeron wore off, I decided I’d rather just deal with the insomnia than the awful side effects of another drug.
As far as supplements were concerned, I tried a few during my taper to treat specific symptoms or correct nutritional deficiencies. I was very cautious, as I knew adding supplements had the potential to make things worse. I used Natural Calm powder (magnesium citrate) during the first half of my taper to help relieve severe constipation, another benzodiazepine side effect. Magnesium use is controversial in the setting of benzodiazepine withdrawal, but for me, it did the trick, and I had no trouble stopping it. I also tried melatonin for sleep, and while there were no ill effects, it didn’t really help either.
I had lab work done during my taper that confirmed low serum levels of iron, vitamin D, and vitamin B12. Pantoprazole had its negative side—it interfered with my absorption of iron and vitamin B12 and was at least partially responsible for these deficiencies. My primary physician recommended supplements to correct the deficiencies. The only issue I had with the supplements was an incident of akathisia after starting a full-dose protein powder containing a high dose of vitamin B12. After stopping it for a week, then titrating it up slowly (adding in 1 teaspoon of powder every week until I reached the desired dose), I was able to tolerate it. The moral of the story is that if you’re trying a new supplement, you should start low and go slow.
Unfortunately, as I learned, there’s no magic bullet for benzodiazepine withdrawal syndrome.
Unfortunately, as I learned, there’s no magic bullet for benzodiazepine withdrawal syndrome. Finding something that helps is often a process of trial and error. Any medication or supplement has the potential to make things better or worse, and often the risk of making things worse is reason to steer clear of experimentation. In the latter half of my Valium taper, I was less willing to try new medications and supplements as I had learned that what helped most was simply tapering off the drug and the passage of time.
Where am I now?
At one year off benzodiazepines, I’m not 100% back to my old self. With that being said, I’m way better than I was at the end of my taper. The good news is that the relentless torture is over. My thinking is clearer, and my energy levels and overall strength and daily function are continuing to improve. The bad news is that I still have symptoms, the most bothersome of which include inner tremor (buzzing like I’m plugged into an electrical socket), fatigue, intermittent heart pounding, and muscle pain/spasms. Mornings are still difficult—I wake with heightened anxiety and heart pounding, but this now lasts only a few hours, and the intensity has eased quite a bit compared to my taper days.
At one year off benzodiazepines, I’m not 100% back to my old self.
Many people ask me to express my healing in terms of a percentage, but it’s hard to assign an exact numerical value. It’s more useful for me to speak in terms of my current level of function. Although I need to lie down to rest during the afternoons, I’m no longer bedridden as I was last year. Showering, cooking, doing laundry, and walking are no longer a big deal. But I still have physical limitations, and if I’m not careful, my exuberance about getting back to life causes me to “crash” and end up in bed for a few days. However, this is happening less as time goes on.
Several months ago, I transitioned from physical therapy to exercising with a personal trainer at a local cancer center (I qualify for this program due to my history of breast cancer). I’m finally strong enough to join a group exercise class with other cancer patients, some of whom are actively in chemotherapy and are in better shape than me. While this may sound pathetic, please keep in mind that benzodiazepines made me sick for years, and that just a year ago I was bedridden. I’ve come a long way.
The month of March 2020 has been the biggest test of my health so far. I took a trip to Disneyland over spring break, just before my one-year anniversary off benzodiazepines, which was March 15. I was able to handle air travel and three busy days in the park, not at full speed, perhaps, but I still accomplished a great deal. I arrived back from Disneyland only to be isolated in my home with my husband and nine-year-old daughter because of the COVID-19 pandemic. During this time I’ve been preparing three meals a day, homeschooling my daughter, and also tackling one home project after another to keep myself distracted. Despite the extreme stress of the situation, I’m able to cope. This would have been impossible last year.
Despite my improvements, I still have bad days, and I get frustrated that my mind and body aren’t the same. Lately I’ve asked myself, “What if this is best I ever get? Could I live this way the rest of my life?” The answer is yes! I still have symptoms and limitations, but I am living my life. I am able to experience joy again, and my life is fulfilling. There was a period of years where I wanted to die every day, and I’m so glad I didn’t give in to that desire.
After years of tapering and living with benzodiazepine-induced hell, it is apparent that what I am experiencing is not just withdrawal. My current symptoms are due to neurological damage from the drug, and that takes a long time to heal.
After years of tapering and living with benzodiazepine-induced hell, it is apparent that what I am experiencing is not just withdrawal. My current symptoms are due to neurological damage from the drug, and that takes a long time to heal. I do believe some healing occurs during the taper itself, but given my own remarkable recovery in the past year, it was obvious I needed to be off the drug before I could make substantial improvements. For me, true healing could only start once I was off the benzodiazepine. My health has improved immensely in the last year, and I expect to continue with the current trajectory of healing. I don’t know how long it will take, or whether I’ll ever be completely symptom free. I’m just taking it one day at a time and continuing to think positively about the future. I think the biggest testament to my recovery is that recently I’ve started unconsciously speaking about my benzo ordeal in the past tense.
So what now?
I’d like to thank everyone who helped me get through the most trying time in my life—my family, my friend Ernie who mentored me through my taper, my friends and colleagues at Benzodiazepine Information Coalition, and the psychiatrist who supervised my taper.
This ordeal has given me a new perspective. Overall I’ve become a person who is more understanding and forgiving. The things I worried about in the past seem pretty stupid. Money and possessions now have less worth, and relationships with friends and family are my priority.
As I have become more active in my daily life, I have less time to be active in the benzodiazepine support groups, but my heart will always lie in advocacy. I plan to continue my directorship at Benzodiazepine Information Coalition, focusing on my writing and spreading awareness about the benzodiazepine problem.
While I’ll always be a cardiologist, I don’t have plans to return to practice in the immediate future. My current priorities include focusing on my health and regaining lost time with my family. If I do go back into practice, though, I can promise one thing: I’ll never miss a diagnosis of benzodiazepine dependence, withdrawal, and/or injury!
RIP Christy you had been thru so much at the hands of these evil drugs and prescribers may you be In peace now and I pray for the rest of us going thru this
I’m so very heartbroken to hear this news. I became acquainted with Chrissy several years ago when both of us were tapering and found her to be so very kind and giving of herself. She never missed an opportunity to share about her beautiful daughter whom she loved fiercely with all her heart. My deepest condolences to her family and the many who loved her from this community.
RIP Christy. You will be surely missed! Another life gone too soon.
Hi Dr Huff. I followed your story and reread it today in an effort to help my son Noah find help with his continuing challenges post valium taper. Noah was prescribed 3-4 mg Klonopin for about 15 years and struggled to taper until he found a doctor who encouraged a slow taper. He worked with a. Micro taper schedule and successfully tapered and has been free of benzodiazepine for several years. However at some point he returned to social drinking of alcohol and has struggled to remain abstinent, plus he has become seriously depressed and almost phobic socially. He has tried some psychotropic meds with either terrible side effects or no benefit. There’s much more to the story, but my goal is to help him find a psychiatrist who understands his post withdrawal challenges and can help tease out what is due to that versus the reemergence of the original problem for which the benzodiazepines were originally prescribed. Any help you can give would be greatly appreciated.
Hello,
I live in Southern California in Long Beach, CA. I’ve been dependent on Diazepam since I was 26 years of age (and now i’m 47 years old). I’ve attempted quitting several times on my own, one in-patient detox for 14 days and stupid programs Kaiser Permanente attempts to tout as successful, much to my chagrin. I had an outside provider of benzodiazepines to help me taper and I was able to get off Klonopin 2mg x 3 per day or 6mg per day but I’m still on diazepam 10mg (prn schedule). I need help finding a new taper doctor/or psychiatrist because all of my experience with Kaiser has been a disaster in terms of health and their knowledge is biased because they are an insurance company before they are a healthcare company. Two weeks ago I was in protracted withdrawals and my blood pressure was 190/100 and they measured me 3 times because they didn’t believe the readings. I was given 1 partial rx for phenobarbital but no follow ups. The doctor said he felt bad having no plan for me after I got out of the ER because he wasn’t’ going to prescribe me any Phenobarbital. told the staff my medical history and they even gaslit me saying I was presenting symptoms like an alcoholic because I was sweating due to the high blood pressure. I had pain all over my body, Akathisia, agoraphobia, migraines, disorientation, confusion and every nerve in my body felt as if was on fire. The ER doctor was young and naive so his opinion was garbage in terms of how to treat a patient with my history. My old doctor who prescribed me a therapeutic dose of diazepam to treat my dependence was contacted by Kaiser Permanente and he said he “felt scared” that he was going to “get into trouble” by this fascist regime. So not only did KP compromise my health by permitting me to enter protracted withdrawals they went behind my back and contacted a personal doctor of mine. I didn’t give them my consent for them to call my former doctor, Dr. Ian Yip who practices in Woodland Hills, CA.
I can’t thank you enough for all you’ve done and continue to do you’re one of the greatest Souls I’ve known thank you for everything lady and I hope you have a blessed life you deserve it
It took me six years to taper off Xanax from a relatively lose dose ( between 1.5 and 3 mg per day)..so happy that you are free now….it takes a lot of strength…God Bless you!
Thanks for finally talking about > One Year Off Benzodiazepines:
A Doctor’s Journey – Benzodiazepine Information Coalition these details
I am having a difficult time getting off Klonopin. Between Xanax and Klonopin I’ve been on benzos almost 25 years. For the chemical
Induced depression, doctors have tried about 32 different drugs on me and four hospitalizations. I will never go back to a hospital. When a doctor suggested ECT, I decided to stop talking and play the game. I was also getting informed about all these drugs at the time. My son has been through hell and me along with him- due to a suicide attempt and they labeled him with “schizophrenia”. The system is evil here. He has suffered abuse and they were even letting him die once. I saw him dying in the psych ward and had to argue for them to help him. But I’m advocating and helping my son and trying to taper. And now my mother needs my help. How can I help others when I need help? No one understands what I’m going through at all. I am judged. I have no physician helping me even though I’ve sought one diligently! My son recently went to a doctor on his own for the first time and this doctor says he can replace his clozapine (antipsychotic) with Xanax!! He prescribed 0.5mg take 4X daily as needed. My son told me yesterday that he has been taking all four at bedtime along with 300mg clozapine. I begged him not to start on Xanax. It’s a long story. And now this doctor has driven a wedge of distrust between my son am my husband and myself. How am I to taper with no support and people needing me?
I was following the Ashton Manual schedule other than I have no physician to replace with Valium. Was on a schedule. But when I got down to 2.1mg, I was very scared that I may just actually kill myself and gradually went back up to 3mg. Now I’m only shaving a little off every two weeks. Less than 5%. And I’ve had many looong holds due to what my son was going through. I feel pretty hopeless.
I still feel like I want to die daily although I do not want to hurt myself. I just ask God to please take me. I have gained 40 pounds since I saw my son dying in the hospital. I recently saw my PCP who is giving me two months to get cholesterol down and lose some weight or he wants me on statins. No more drugs. I’ve never had weight problems. Been thinking my whole life. I guess I need to just push myself. I was in a small zoom group at one time and it was not helpful at all. I left FB and BenzoBuddies is so confusing to me. I cannot follow anything and have made No friends there. Need support and friends.
Martha,
I feel so bad for you. I post in benzobuddies and I personally find the forum very helpful. I hate the FB benzo support groups however. I feel so bad for you and wish I could help in some way. Please don’t ever give up. I am having a very tough time too getting off these horrid drugs. If you need a friend and support buddy, I am here for you.
My son is weaning off Clonzepam.
I’m only sharing how I have been helping my son.
He was on 1 mg. Clonzepam 4 times a day. Now he is down to .05 mg. Bid and with me helping and praying for guidance, I know that my son
will succeed.
He’s not only drinking more water, but I have also been making him fruit smoothies, which also help him. And
for some reason, magnesium helps him with anxiety, so I add cashews to his fruit smoothies.
I am only a mom who loves my son, and Jesus is helping me with my son.
I told my son to pray and ask God for the answer.
He told me that God said, “change your diet, change your life.”
My son ate much processed foods, and fast foods.
He went from meat, to veggie meats, but now I have been buying a lot of raw foods, such as carrots, bok choy, cauliflower, beets, tomatoes, avocados, greens, sweet peppers, lemons, and lots of fruits.
Would love a friend. No one else can understand.
Still looking for a friend who understands?
I do.
I am needing someone also. I am tapering myself off of 3mg. Xanax for 15 years.
Your post really helped me. Thank you for being so honest. I am going thru a similar situation where people who seem helpless need my help while tapering. Your son is not completely helpless. He must find the strength within himself to advocate for himself. I have to find that same strength within me. And so do you. But, our first priority has to be for ourselves. I have tapered down to .2 mg of lorazepam from 2 mg, and I’m in hell. There’s no help ANYWHERE, so I have to figure this out for myself. Thanks again for your post. Eileen
Generic pills are potentially +\- 3% of labeled dosage. At very low levels of micro tapering, an added or lost 3% can be a huge deal. Small amounts of the drug are also lost due to loss of potency over time.
As someone going through BZD withdrawal and weighing the pills to very small amounts, I understand wanting to be accurate, but that +\- 3% is always going to an issue.
This proves to me that the OCD caused it exacerbated by withdrawal plays a major role in the final stages of withdrawal. Part of it actually is in one’s head at that point, as blunt as that may sound.
Despite the level of suffering I know you all feel (I’m in it too), please be aware that hypochondriasis and obsessiveness grip us during this time. Follow the manual and go slow but at extremely low levels you are taking an approximation not a precise amount and that’s a reality I never hear anyone bring up.
Please avoid the pits of rumination that come with online benzo forums as well. Take the tapering wisdom you need and then leave it alone. I’ve experienced more anxiety reading nightmare blogs on benzo “buddies” in the early phases of my taper than I do now 6 months later. I believe they now cause more harm than good by providing a means to ruminate instead of simply providing tapering advice. Follow your body, the Ashton Manual, and evidence based therapies.
I loved reading this and feel much less alone after doing so. Quit 3 or so months ago and my life is a shadow of what it was just a year prior.
Thank you. This is helpful for me.
Thanks for your comment. I find benzobuddies extremely helpful but I guess it scares some ppl. I find great comfort in talking to others on BB. It lets me know I am not alone in my struggle to get off these super addictive drugs.
A multi-year taper for a few weeks on Xanax?? That psychiatrist saw you coming!
Christy,
Loved your article. I sent it to my family to help them understand what I am going through.. I have seen several posts from people looking to go on a taper and this can be overwhelming on top of all the withdrawal symptoms. I like you used a scale and cut and shaved 5 mg diazepam pills until i reached a very small dose which made it very difficult to measure using the scale. I then created a technique that allowed me to make a large batch of powder and load the powder into capsules. You then can easily get a very accurate small dose without the need for complex liquid titrations. I created a post on the benzobuddies site with step by step directions to do this.
The post is in the taper plans under titration and is titled:
“Dry Powder Titration technique for use with small doses”
Here is a link to the post:
http://www.benzobuddies.org/forum/index.php?topic=259850.0
My Bio:
I am 66 years old had been taking a low dose of valium 5 MG per week for about 10 years to relieve anxiety. Decided to reduce my low dose by approximately 25% in December 2020 and had severe side effects not realizing it was due to the dosage drop. Maintained the same level and after 3 months of intense symptoms, saw gradual improvement. Began tapering slowly using dry taper about 5% per month. By July 2021, I have reduced my dose by about 60% to 2 MG per week. Going slow to minimize intense symptoms. Facing depression, pain in my neck and shoulders, and heart palpitations but determined to see this through. My prayers ? to all on this journey.
Christy
Will there ever be a medication to attenuate the symptoms of benzo withdrawal and hasten the withdrawal process, as there is with opioids – “Medication assisted recovery” – ?
I am 76 and have been taking 1 mg/day of lorazapam for 30 years or more. Knowing the difficulty of withdrawal for many people, I decided years ago to just continue as I am. That seems to work for me.
BTW, I am not minimizing the fortitude and sheer courage of those who have jumped. Nor am I dismissing my own good fortune in being able to stay on a stable dose. I know that many can’t. I am simply noting another path through a difficult and challenging world.
I’m 66 just lost my son and started my taper 2 months ago, I’ve been on this poison for 24 years. I am currently at Klonopin .125 and will start a liquid taper in 2 weeks or so. I have found a diet, yoga/meditation and daily walks have really helped me manage symptoms. Please don’t be discouraged by what you read, you are to alone and I believe whole heartedly life will be better after I am off this toxic medication.
Bob Q,
I want to to the same as you. I was on benzo’s daily (4mg of Xanax) for nearly 12 years. I have a lifetime of PTSD which includes horrible panic attacks and agoraphobia. As I understand it, here in Charlotte NC, doctors have been asked to take geriatric (I am 62) patients off all benzo’s. I decided I would go along and go to rehab. They weaned me off in 4 days. I was having such a horrific time I was put back on Xanax, but in a months time I was put in the hospital for another 4 day taper. After 7-1/2 months of no benzo’s my body was still shaking 24 hours a day along with many other horrible symptoms. An addiction specialist I went to at that point put me on 2mgs of Klonopin and we weaned slowly over 8 months, I jumped off at half a .25 mg tablet. My body continues to shake, along with panic attacks and etc. It’s now been nearly 2-1/2 years trying to come off benzo’s. I WOULD GO BACK ON BENZO’s RIGHT NOW and STAY ON THEM until death to stop this never ending horrific nightmare. But now there’s the intense worry they will eventually stop prescribing benzo’s because of the damage they do. I’ve never been so close to suicidal as I have been since I started to “do the right thing”. I seems having quality of life doesn’t matter to the health community if you’re not doing what they say I should be doing. I’m both frustrated and angry. Now I’m looking into Ketamine treatments.
I am the opposite, my Valium of 2mg at night had my world balanced. I’m 62 and I found dna test, through a R&D drug company friend of mine. Pharmacogenetics is leading to the field where each of us can get “personalized medicine. The 2D6 pathway is the pathway where the benzodiazepines (and many other drugs) metabolize. This test is the future of what and how much and for how long you should be on benzodiazepines and all sorts of antidepressants (people on these SSRI drugs are dangerous, many, most, serious complications so they add more to that and more to that. Before you know it, you’re on 3-4 psych meds that drive so many people to suicidal thoughts, homicide cases and a loss of function!!!)
These dna tests also can give you information about your health issues like diseases you may be genetically predisposed to, example heart attack, stroke etc. Doctors are slowly getting patients to get these tests but personalized medical care is on the horizon. When the Opiate laws were recently changed, my doctors said and I quote one “I have to take you off Valium, I can’t afford to lose my practice” the others had similar comments BUT none of my drugs were opiates. I can’t believe all that I’m reading. How the medication was prescribed, (the medication could possibly be something that should not have given to you in the first place) been prescribed for you personally, possibly all the bad side effects you are individually suffering through might have been thwarted by the dna 2D6 pathway part of the dna tests. Luckily I got my test and am back on track.
It’s cathartic to read this recount of this exceedingly difficult ordeal.
I’ve been a BB member since 2016 after doing a rapid detox of 30 days off Clonazepam, 6-8mg. daily. Has been a hideous nightmare straight through, no windows as of yet. I seriously doubt, at this point (63), I will ever recover, I only wish to God I had known and that there was far greater public awareness and better education provided in the medical profession.
Withdrawal symptoms and not reducing dose of klonopin? Or not?
I’m still at odds with this idea of ‘Tolerance WIthdrawal’ or some say ‘Inter-dose withdrawal’.
Basically is it possible,.. perhaps even likely that an overwhelming number of symptoms / health issues can begin occurring to a person who is on a Benzodiazepine but has not reduced their dosage ever?
I have way too many things to list as symptoms and I’m on 3mg’s Klonopin/day. I’ve been taking Klonopin for 20 years. (Seems like yesterday I was Rx’d Klonopin for the extreme case of insomnia.. the only issue I began with). It worked.
Anyhow, I’ve had strange symptoms that are basically chronic for the last 10+ years .. with more creeping in as time passes.
This is what baffles me. Are all, or the majority of my issues going on a result of the clonazepam and my body/brain adapting to the same dose ?
Essentially I’ve been ‘withdrawing’ for years while taking it? Otherwise, I question the sense in going through the hell (that may never end) of tapering off of it.
Essentially with this phenomena .. When I take my benzo dose it should eliminate the symptoms (temporarily)… yes, no? Because, for me.. my arsenal of symptoms remain no matter if I’ve just taken my dose of Klonopin for the day or it’s been 24 hours.
It’s not that I can’t just tough the days out.. as I do now — but I don’t know if eliminating the benzo will improve or hurt my situation… and it’s a LONG time to wait to know for sure with how long the body seems to take to recover to any degree.
So what do you think/know? Can all this crap happen even while still taking it normally before tapering/stopping?
Take care,
I’m a very baby booming 70 year old totally healthy absent benzodiazepine dependence. After finding my husband hanging from a noose in our garage 8 years ago, I was diagnosed with PTSD, panic disorder and major depressive disorder. I was placed on 5 mg. Of lorazepam in addition to other anti depressants. I have been on the lorazepam ever since. I have a new psychiatrist who wants to titrate me off the benzodiazepine quickly and in doses of 1mg every two weeks. This is what she calls the “medical model”. She has “reassured” me that she could eliminate the withdrawal side effects with anti psychotics such as syroqel and mood stabilizers ie. lamectol and lithium. I’m terrified as I have tried tapering on my own. Hell does not describe my experience. I live in San Diego. There is no one who can help me here for less than $1,000. Per month. I need help. I fear I am going to be harmed and/or killed by this doctor. Can you help me?
Hi, I am currently tapering off Klonopin & I know the trouble it can cause, especially the worry about your doctor dropping you too fast. I found a place called safe taper & the Dr. is in California & does video calls if you’re in California. He tapers you very slow, but unfortunately, he doesn’t accept insurance right now because this is a new program, so it costs $250 a month, but to me, it’s worth every penny. Look up Safe Taper, and I hope this helps.
These drugs this Doctor wants to prescribe are for
bipolar disorder. If you do not trust her, and you are afraid of her, that is not a good fit. Some states use medical marijuana for PTSD. I don’t know about California.
I cannot begin to tell you, how sorry I am for your loss of your husband by suicide. I lost a sibling to suicide. It is IMPOSSIBLE for anyone to understand that pain, unless
they have experienced it. I hope you have found the right doctor dearest one. Blessings….
I have tried seroquel and My experience with it was absolutely horrific.
Caroline – I was in bad shape in rehab after a rapid taper of valium. I tried every antidepressant they had. Lamictal worked well and within HOURS for me but messed up my sleep. I was able to do research. I honed in on mood stabilizers. I found that lithium often did not disrupt sleep. So I aksed for that at a low dose. Only 600 mg. It worked! It calmed down my terror and helped the God awful depresssion. So while benzo tapering may be horrible – I don’t think this guy is out there with the lithium suggestion. It really helped me. Not a panacea, but significant help.
I’m in the same boat as you. On K for 20 years, but at a dose of .5-1 mg daily. Began having what I assume is tolerance withdrawal about 2 years ago — after the metabolic changes of Menopause, I suspect. I was forced to drop from 1 mg to .5 daily by prescribing doc about 4 months ago, which wreaked havoc. Some days I would updose to mitigate symptoms, then I would run out. After finding a new physician, I was reinstated to 1 mg dose — but it didn’t work. Withdrawal had already set in. Am now trying to stabilize at .5 mg daily (divided in 2 doses). But it isn’t going well. I’m now left to wonder if I should continue to hold a bit to see if severity of symptoms become more manageable, or if I should taper.
hold till stable going up can be worst
I would try to stabilize. ..then slowly proced
Yes.. all those. Symptons are the benzo no doubt. . Pls consider starting the process..yes it is tough but if yagot to tough the day out. Can’t be good for rest of life
I was 3mg of Klonopin a day for 10 years and my doctor tapered me off in 5 weeks and I almost died. I found out that my brain started rejecting the Klonopin and made my symptoms worse. I spent 4 weeks in the hospital and they used a high dose off gabapentin to ease my withdrawal symptoms. It’s possible to get off but I recommend a very very very slow taper. I actually have several different brain scans in the next two days to determine if there is any brain damage. It’s been 10 months and I’m back to work but I suffer from extreme short term memory loss and I have days where they think my brain is misfiring and it causes extreme exhaustion and a host of other symptoms. Your brain has to learn how to work properly again without the medication and all the connectors that used to be there have to regrow. This causes the misfires. At the end of the day, I’m glad I came off the medication but wish it was handled properly. Good luck!
I was exactly the same and on 2mg of Xanax was put on it for menopause 4 years ago, when all I need was hormones. Started getting bad days tried 7 antidepressants and different get could not work out why nothing was working and it seems I have been doing through withdrawals every day for 2 years. Now going through withdrawals and it’s absolutely hell. I’ve never been so scared in all my life, but I want and need to get off it as I was also getting visual hallucinations and blurred and double vision on driving. I never knew this drug was so potent and wish I had known what I do now.
Thank you for sharing your story.
How are you doing now?
Hello Dr. Huff, your story has enlightened me as to what I am currently going through. I have been on Ativan for the last 8 years, 2-3 mg per day. I have many side effects, many like those you’ve mentioned as well as those who have written comments. I have asked my Doctor to help me taper off this Benzo, but his answer is oh just stay on it. I will do my best to start my tapering off by reading and doing my best to stop taking this drug, which is causing more anxiety, physical and mental problems. Thank you, again for sharing your experience, it has helped me to understand why I am not getting better. Continue to heal, my prayers are with you and your family. God Bless. F.S.
Thank you for your bravery in sharing this story.
Thank you for sharing your benzo story. Your journey off is most promising, comforting, and encouraging. I am 3 months into my journey and the symptoms are debilitating. I often wonder if I will ever be able to drive again. The fear of getting under the wheel is over whelming.
Thanks for sharing your rehab story. And all the other comments as well from others. Unfortunately your stories seem to validate my horrible experiences with Benzo’s too. After seven or eight years of 4 mg of Clonapin/day, I self-regulated down to 2 mgs/day and then … four years ago I got myself down to one mg per day. It is the last mg that seems to be the WORST TO GET OVER. Have been trying all this time and now my perscription has run out and in the SF bay area, it seems nobody perscribes any benzos at all anymore. So. how I will ever get from 1/2 mg. a day to zero–while only having thirteen mgs. left– is scaring the be-jesus out of me. I am thus looking online for any and all support. WIthdrawl seems to take forever. My my story is fairly typical too, like most of the others I’ve seen so far … my heart my breathing my lack of sleep and my hightened fears … IT’S ALL SO DIFFICULT AND RETRACTED. CHin up anyway I guess ….
I went cold turkey in 2012 and although I survived I wouldn’t recommend it. I jumped while in the safety of my brothers home and my sister-in-law made sure to keep a bit of food in me. I used a MJ tea to help my appetite. To anyone that is doing it alone I suggest you inform your loved ones and your medical caregivers of the withdrawal symptoms. I was in constant fight/flight mode for a great long time time and it still spikes, especially during covid. As this article indicates, you must put your health above all else to survive. I’m feeling pretty good nine years later but I still have symptoms and I must remind myself that my brain is still healing. Struggling for a few weeks now, I was glad to read this article. My memory still isn’t good and caring for myself is still a struggle but each year there is a noticeable improvement. I’ve taken a few short trips and I now have two dogs and several plants. Relationships are still difficult but improving. I would really like to help others that are struggling but for now this response is enough. Take care everyone and don’t forget nature is a great self soother.
Lory, thanks for sharing your story with others. I too am embarking upon my journey to recovery after being on valium for 20 years……taking 10 mgs. three times a day. I am now 3 months into recovery. The ride that benzo withdrawal will take you on is no joy ride, it is no piece of cake. It is helacious!!!! Prepare yourself for the ride.
My symptoms are…horrible knife like pain in back of neck, legs feel weighted down (jelly legs). Balance is off, feels as though I cannot put one foot in front of the other without toppling over. Literally have to grab and hold on to whatever is close to me to keep from falling. Overwhelming presence of fear. The thought of driving scares me to death. Wondering if I will ever drive again. Prickly feelings on skin, ( bug crawling sensation). My spine is very sensitive to touch. Actually feels like millions of nerves firing and misfiring while trying to reconnect to their original circuit board before valium moved in and took over their station having a
crippling commanding lead. I have to hold on to the walls when taking a shower, although it renders some temporary relief from the discomfort felt in my neck. Sitting down is difficult…feel wobbly as if I am going to fall out of chair, blurred vision, sensitive to light and sound. Easily agitated, quick to become enraged which does not help the situation but leads to further aggravation to the central nervous system causing even more debilitating symptoms. Sleep is good..taking melatonin. Apetite is good. Experiencing depersonalization, derealization, Inability to think clearly, Walls appear to be slanted, pounding heart.
I am doing my best to cope with the horrendous pain for there is comfort in knowing that this too shall pass. There is light at the end of the tunnel. One day the demon inside me will die too!
Hello, I am currently dealing with tapering off of a benzo myself. I am now on Valium for over a year and went from Klonopin 3mg a day to 45mg of Valium. Now I was not always on this high dose of klonopin but for 18 years I was on .50 mg daily abs that worked fine until a tremendous tragedy happened. After that I found myself at drs who kept changing my medications etc. I finally found an addiction specialist and in 4 months have went from 45mg of Valium to 37mg. I will start by saying the last taper which was only 1mg abs been hell. I am dizzy crying uncontrollably have inner tremors and no interest in doing things. What keeps me going is my 8 year old son and my parents. Sadly I lot my husband tragically in May 2015 and I had I guess what you would call a breakdown from 2017 until now. I have tried so many medications I can’t even remember all. I feel like I lost 2019 as I was in such. Ad shape. Somehow I have managed to still function daily although I went from working as a top assistant in banking to a stay at home mom. Each drop seems to be almost the same. I am fine for the first few days and then I fall apart for weeks. I am now learning that I cannot handle more than 1mg per month if even that much. I am now taking gabapentin to help with the anxiety and panic attacks. Valium has also given me acid reflux! I feel this taper is going to take me at least 2-3 more years but I am hoping as time goes on it may be easier. I was a marathon runner and had many friends prior to this. Now I am lucky if I can say I have 3 true friends. Most importantly I have to get off this Valium as it is hurting me more and I want to be able to enjoy life my son and family again. Thank you so much for your experience and everyone else. It makes me feel not alone. Good luck to everyone and this gives me hope!!
Hello, Thank you for sharing your story .. I hope more drs hear it and learn. I was married to a pharmacist and he even thinks I can just stop clonazepam in two weeks .. He and our children are my support but I’m mostly doing it myself ..I’ve been tapering off clonazepam since 2018 , I was on 1mg since 1995. I’m down to 1/2 of a .125 oral disintegrating pill. It was hard at times but mostly not as bad as I thought , my primary Doctor is very impressed by me, I was just ready. I’m dealing with child sexual abuse memories but it is easier now at age 52. I believe clonazepam saved my life so I do believe it’s a important medication but the stigma and the fact it can cause dementia it’s not good long term. You are inspiring ..your story has encouraged me for the last part and stopping the medication completely soon. Take Care and God Bless you .
Thank you. I have been struggling with this for 25yrs. I am embarking on another journey of step down. I made it to 1mg and went back up to 6mg. This information gives me hope and strength.
Your story is very inspiring! Your physician is right to be impressed. I think many of us who have been on these medications for so long wonder if we can titrate down and eventually come off — while preserving some quality of life. We need stories like yours to illuminate a path forward.
Thank you for posting this update . Yours read exactly like mine except I was never believed . At all about any of it . My RN husband had to take a year off to care for me after I jumped ., We could get ZERO medical support at all and were told to go home not come back , go home and take your benzo etc etc horrible ( we needed help with tachycardia and cath rx when my bladder failed) .
I’ll never forget how the medical community responded to this .I will be 2 years off in Dec 2020 .My fear of drs is intense .
Was started on X then K in 2004 after gall bladder surgery I wasn’t recovering fast enough from. It was used as a pain killer/muscle relaxer and had I had a CLUE about what this poison did I would have passed Hit tolerance within 18 months and was elevated over the years to 8 mgs a day . 6 year bedridden taper , first year off was like an acid trip from another universe . Things are better now , not perfect but better . I will never understand why this substance is even legal .
The neurological damage is shocking but I a adapting as I heal an I have accpeted the things that may not I am just glad its over
I am on the same journey unfortunately. I was misdiagnosed with a rare tumor and this was given to stave off panic attacks. I started slowing tapering only three months after using .25 twice daily. In eight months I have only been able to reduce 25% (current dose .375). I saw in a thread that you developed hypothyroidism, did you receive treatment for this?
Thanks for your story. I am currently water tapering from Ativan 1.5 mg per day. I am 70 years old and it is a pure hell for me. I feel so sick that I think I will die and will not be able to get out of it. It is just horrible. I am very scared. I am two months into my water taper and my symptoms are horrible. I loose any hope that my life will ever be normal again. Thanks for any feedback.
You will heal you will. Just tapper slower if need be
84 years old and now taking clonezapam 1.8 mg in the morning and .25 at night. Tomorrow will reduce morning dose to .125 thus will be at .375 mg per day. I won’t describe my symptoms but they were/are classic.
Biggest problem is my psychiatrist who wants me to stay on some level of clonezapam. Is not real happy with what I’m doing.it’s tough to believe in a plan not enthusistically supported by your Harvard Med. School. Psychiatrist. I want off altogether.
OMG, I have taken it for 30 years and have been free of it for 13 mounts. But what a ride and im still on it…the ride not the benz.
Recently a doctor prescribed be a benzo type to sleep reluctantly i took them 4 days now at night.30mg w white power capsule cant remember the name at the moment. I did sleep a bit better in the last few days. It has been the most terrifying and life threating experience and its not over yet. I did it the hard way no tapper with Valium and i almost ended it.
You are a true hero and I would love to talk with you sometime.
I found the Heather ashton manual a few months into the withdrawal and just to read what was happing to me was somewhat a relief because I was loosing my mind.
Mike
Your doctor is wrong.Iam also 84 and am doing on my own. .Mind you my Doctor (as I have had Polio which left me with weak quads so fall easily) he told me to take one every other night . What I am doing i take one quarter every night .. for about 2 weeks . So far so good ..will go to one quarter every other night . Will see.
My heart goes out to all you brave souls.I am so proud of you.It took me 3 years to taper off and I havebeen off klonopin for 6 years.I found an addiction psychiatrist that help me greatly and understood me.I was put on Klonopin for sleep.Never once was I told it was addictive.When I stopped taking it completely on my own and lost 30 pounds could not go to work and had a seizure then he told me I could have died by just stopping it altogether.My daughter was there and she asked him if it was addictive and the doctor said yes.That was when I found out.He put me back on it.I had been on it for 10 years and he said I would have to take it for life.With a good doctor’s help and almighty God I have been off Klonopin for 6 years.It was such a rough ride.I still donot sleep well,I had bladder problems,stomach problems,severe dizziness.I am 73 years old and still having windows and waves but it is ok.Never ever give up.Do your research and try to find a good addiction psychiatrist that is willing to assist you.zDo your part and pray it will be all right.I am praying for all of us.Doctors should tell their patients that Benzos are addictive.I commend all of you and God Bless us all as we travel the road to be benzo free.Love all of you.”Remember never ever give up”you can do this.
Please don’t go to every other night. You will have interdose withdrawal. Reduce slowly, very slowly. See benzoinfo.com/ashtonmanual
Same story here. 62 years old, have been on clonazepam for 27 years, increased over the years to 1.5 Mg’s. I am down to .5 in three months with the usual withdrawl and intend to stay on .5 for the foreseeable future. My Harvard Med School trained doc does not want me to taper off either. I tell him when he retires/dies, NO ONE will prescribe this and I refuse to live in fear of that and in the thrall of this insidious drug — against doctor’s orders! Sheesh!
llluneau@comcast.net
Been on temazepam for 2 years ativan for 27 years and crossed over to a valium substitute taper. The process is unreal.The symptoms of tapering 2 benzos has been unbelievable.worse than active duty combat.suffering to the extreme that ebbs and flows.lost 60 lbs and was beridden for months at a time. Like dying and going to hell twice.symptom management is the name of the game.dont go to treatment centers.a total waste of over 1.5M in cost out of pocket.It’s a totally diy project for iatrogenically dependent folks like myself.best done at home with microtapering and patience.it can be done.the body takes time to adjust.the gaba receptors need to heal.benzos are poison.
I urge anyone to work with their gp on a crossover taper ASAP if he or she is willing. As an addendum take care of you’re physical/,nutritional needs as well. The tapering process generally takes upwards of 2-5 years. It’s painful,difficult,and unsettling to say the least.As Ashton points out,NO ONE should be mandatory forced to discontinue benzodiazepines,however as a caveat NO ONE should be on them forever either. Lader says once you’re on them you’re on them.Not so.It is a quality of life issue.Risk vs benefit analysis.No magic cure except very very gradual dose reduction over a very long time as brain chemistry homeostasis restabilizes.How you ask.The neurological pathways adapt to the benzodiazepines.Take them away and BAM everything reacts accordingly.A good neurologist will tell you this. There is scant research on GABA receptor repair from benzos.Hint:There are major medical centers in the US who are studying this but have NO definitive answers only experimental trials.Sounds grim.Alas I’ve found that the SNRI mirtazapine @15mg HN1 receptors respond well.This may not hold true for everyone since everyone’s body chemistry is different.Downside:mirtazapine also carries risks of dependence.It was originally developed off label as an appetite stimulant.The best advice I can give is stay strong,don’t give up and stay the course. Don’t neglect hygiene,food,or mild exercise as tolerated.I digress,however I can’t emphasise enough to get up and moving.Being bedridden can lead to pneumonia and bed sores.The best advice I can give is:the only way to get through this is to pull through it.Strength,fortitude perseverance.Not many days are going to be marshmallows and rainbows.Don’t run off the cliff. I feel blessed in that my cognitive abilities we’re not impaired not sustained neurological damage.My psoriasis really flared up though.Valium can trigger psoriasis flare-ups.Dr Huff is an
Inspiration and a qualified medical professional that has finally shed some light on a subject that the medical community has no clue as to what to do with benzo dependence.R/D is sorely lacking for the management of benzo dependence. Tapering is all we’ve got right now.
Hello Dr.Huff.
I started taking benzodiazepines when my son was born in 1998 due to postpartum depression, anxiety, insomnia, and intrusive thoughts. I was at my highest dosage about 3 years ago July 2017. It’s now October of 2020. I have tapered off Temazepam a horrid drug and tapered off of 3 MG of Clonazepam down to 0.5 MG I bite it in half and So I take one half early at night and the other half at bedtime. I also take a short shelf life Z drug of Sonata 15 MG a night. I do still feel drugged but not completely out of it. I cannot taste food any longer. I have a flat personality because of the meds. It’s difficult to not feel as though I’m hung over daily. So I was a Full Time caregiver to my one and only son who is intellectually disabled and autistic. He finished high school in 2017. I moved him into a Group Home in Arlington. The situation was more than I could bare. I reduced to what I’m on now which is 0.5 MG of Clonazepam. I couldn’t have coped before. I just recently got married and I’m on his insurance which is helping me to get some long needed professional mental health. The psychiatrist I have been going to for over ten years wouldn’t cross me over to Valium he said it’s more addictive than Clonazepam and then dismissed me talking about it further. I do not want to be cut off and I’m in fear that unless I say what he wants to hear he will cut me off. I say everything is great. I have been calling detox centers and they seem shady and like sales people. I need to cross over to Valium. I’m getting increasingly depressed with Suicidal Ideation. I need help getting over this last hump without going to a detox center. I do not want to get on a plane right now. I had walking pneumonia in January and it took me a month to get well. I’m my sons legal Guardian as well. I would appreciate a doctor referral for crossing over to Valium. I’ve been on this horrid drug for 22 years. I would appreciate a few caring physician referrals. I have insurance now. Thanks for sharing your story.
I am on 25 of klonopin only used for 4 weeks ..and dam kicking my butt I start my weening tonight…only 4 weeks and feel likecrap..article gives me hope
Been on temazepam for 2 years ativan for 27 years and crossed over to a valium substitute taper. The process is unreal.The symptoms of tapering 2 benzos has been unbelievable.worse than active duty combat.suffering to the extreme that ebbs and flows.lost 60 lbs and was beridden for months at a time. Like dying and going to hell twice.symptom management is the name of the game.dont go to treatment centers.a total waste of over 1.5M in cost out of pocket.It’s a totally diy project for iatrogenically dependent folks like myself.best done at home with microtapering and patience.it can be done.the body takes time to adjust.the gaba receptors need to heal.benzos are poison.
I need a little help with math for my taper. The liquid titration seems complicated so, I was thinking about dry cutting. I take 0.5mg 3X daily of Clonazepam. I don’t know how to convert weight to dosing. I want to make a 5% cut in the total original dose every 6 weeks. Do I just do a 5% cut in the weighed amount? It seems like its missing something. Also, what scale should I use to continue making 5% cuts all the way through since I plan on making 5% cuts of the original dose and not the reduced dose?
Dr. Huff,
Thank you for sharing your story. I can relate beyond words. I have been off of benzo medication for 17 months and 8 days. I am still experiencing fatigue, heart palputations, social anxiety and many other symptoms due to withdrawl from benzo. I see improvement yet being “In this” is hard to describe to any one who has never been through it. As much as I think it would be better not to exist this way and live in this hell. I do feel hope that this will pass because of stories like yours. I am seeking online support groups in this horrific process. I am familiar with 12 step programs but this in a field on it’s own. I don’t feel joy, I feel sick and tired of this withdrawl but I am a survivor and I WILL get through this. I appreciate any feedback with support groups or even if we can start one I am willing to participate. I keep the faith and know my cross will get lighter “One day at a time”.
Thanks.
This validates everything I’m currently going through.
I’ve been dealing with Guillain Barre Syndrome and tapering from Ativan at the same time.
Then during recovery I was prescribed gabapentin which turned out to be toxic for me. Every thing you experienced has been beating me down.
But not out.
First Weigh a full tablet and use this amount as the baseline. so Say .5mg klonopin tablet converts to .170 mg of weight. .5% reduction means taking the weight down to .161 mg. After Two weeks at .161 mg reduce weight 5% of .161mg or .008mg resuls in .153mg for 2 weeks. Reduce every 2 weeks 5% to 10% of the current dose not the original. Slow but steady so to speak. Amazon offers some cheap 20mg scales.
I am sorry that I came to reply so late.
You did suffer and it was not necessary, You were misled by an uninformed hanger-on who knew nothing of the method that he claimed.
“After much trial and error, I found that reducing my Valium by 0.25 mg to 0.3 mg a month was a comfortable schedule for me.
” Despite my slow taper, it was, overall, a nightmare from beginning to end.” It needn’t have happened this way. Benzobuddies never did have any information about the BenzoMicroTaper. The first effort there was Moran’s instruction to put any benzo in any amount into 100mls of water and take out 1.0ml per day. If you calculate this, a person using 30mg Valium would cut 9.0mg per month. Is that reasonable to anyone?
Diazepam in water simply makes an inconsistent mixture. You would have no idea how many mgs of Valium are in that single ml. This is just the defunct water-titration.
Now if you were tapering far less than that sudden C/T that you did at the end, why would you just stop tapering and C/T? Do you know that people did this years ago and this caused PAWS? This is why you were so sick after you stopped tapering.
I don’t mean to unjustly criticize you, but people will imitate you and be harmed by doing so. This is all so unfortunate. A scale is as accurate as the disbursement of the mixture weighed on it. Was every speck of benzo accounted for? Did you really know what you were weighing when you manually cut your cut from the powder? Was the benzo evenly distributed across the powder?
I am so sorry that you were harmed twice.
Dr. Huff,
Thank you for sharing your story. This is especially important as you are a doctor and my experience thus far has been that doctors refuse or are unable to acknowledge the difficulty and duration of withdraw. So thanks for challenging that.
I certainly like and accept your statement that we are a work in progress. This is important so that we can suspend our self judgement regarding our the state of our health and mind as we move through this.
I began using benzodiazepine after witnessing the death of my wife and son in childbirth. I do not have anything bad to say about my doctor of the time that prescribed this to me as I had completely lost my mind.
I have been completely off of benzodiazepine for 5 years now and all of the issues you recorded are certainly true. However I am not the bearer of good news Dr. Huff as I have encountered new symptoms in the past year. I have been at a place where I felt I had achieved full recovery to the point that I was travelling, renovating my home and maintaining friendships etc. But this past year I have encountered severe and chronic migraines (every day) something I never had in my life. In addition my neck muscles completely contract painfully as well as sudden blurred vision and extreme light sensitivity. I also have visible tremors. A number of doctors have told me that this is caused by my posture but I somehow don’t believe that. My internal voice tells me that this is likely benzo withdrawal as I was on the drug for 20 years. So even after 5 years of being totally off of it and experiencing good periods of health I believe I am facing withdrawal again. I don’t know if this is true but doctors refuse, or are unable, to see benzodiazepine recovery as this challenging. After living with these symptoms and pain for a the past 10 months I have no idea whether they will end, or maybe this is just my posture after all. I don’t know if benzo withdrawal extends past 5 years and I can’t get answers from the medical community but I’ll see.
In a way I privately hope it is benzo withdrawal and that my brain is doing some new healing and rebuilding pathways etc but certainly scared at this point that it will never end.
Thanks Dr. Huff again for adding a medical professional’s perspective after experiencing withdrawal yourself. However you may want to keep your seat belts fastened as the years pass.
Any feedback from others that experience symptoms in the 4 or 5 year mark would be appreciated.
Tom
Thank you for sharing your story. There is so much that needs to be done for people who are tapering or those who want to. The medical community needs to become responsible in helping their patients without judgement. We need to create a benzo withdrawal first aide kit; make sure that patients are aware of what’s coming and give them every chance to be successful. Several weeks (a month?) ago I had an appointment with a GP that I hadn’t seen before. I needed a prescription for Propranolol to calm my beleaguered heart. For the first time in two years of detox from a cold turkey withdrawal from Xanax, he asked me what it was like for me. I was stunned. No one had ever asked me that question and I had to struggle not to cry. I shared more with him than I intended but it felt liberating. I was hoping to share enough information to assist him in helping his patients successfully navigate benzo withdrawal. I cried all the way home and off and on for the rest of the day. One question from a medical professional made me feel validated. I was prescribed Xanax for 32 years.
I also was prescribed Xanax for 32 years. I had to quit my job last week and am devastated by it. That was my only joy but I had to take too much time off for the extreme anxiety I was dealing with. I went to detox which was a big mistake. I am down about 40% since October of last year. It has been very difficult. I live alone. That makes it harder.
My psychiatric nurse practitioner is awesome. Doing everything she can to help me. Has given me Remeron which helps with sleep and tinnitus but I read horrible things about it.
I just came across this article today as I was searching to see if anyone one else was still experiencing on going side affects from these drugs. (Mine were clonazepam and lexapro) It took me approx. 8 years to get off of and reading these stories has brought all the horrifying daily struggles back. I have been off benzos 6 1/2 years and I still have periods where i have nausea for 2-5 days in a row and off and on again vertigo.
This is all stupid and you help nobody. You should help those who suffer now not future.
What? What are you talking about? She’s sharing her story.
Dr. Christy Huff: Thank you so much for your story. It mirrors my story only I ended up in ER over and over with what they said was anxiety attacks which led to Afib.. and eventually a heart attack .. (I don’t really think it was, but that was on my discharge papers). I had to really be stubborn to avoid Ablation and heart cath. I knew It was all inter-dose withdrawal. They simply would not believe I was in withdrawal.
I also found my own answer from BenzoBuddies. My doctor listened… he did help me cross over to Valiuim.. 15 mg to equal the .50 Ativan dosage I was taking. I was in and out of hospital for a year before I found BenzoBuddies. It’s been 2 yrs now and I’m still at 9.5 mg Valium. I feel every cut. I cut .1ml as often as I can.. I’m finding that I have to hold for 2 weeks or longer to not have Afib and really spiking BP and just stay out of the ER. I do have the tools now that I didn’t have before. I pray my dr continues to prescribe.
I will print out your letter and show to him. I’m crying all the time .. have no desire to get anything done… plus I’m a lot older than you. I was 79 in Dec. My doctor says ..why get off ??? oh my goodness. He still does not understand what this drug that he prescribed to me for anxiety has done to me. It was interdose withdrawal all the time causing the anxiety attacks because I was only taking the Ativan every few days or as needed. What a mess.
I’m doing the liquid taper per Ashton Manual and with BenzoBuddies help. I pray I get off this. I’m afraid to go any faster…the symptoms hit fast and hard. CBD does help stop an impending attack. My attacks get so out of control w the Afib that I do not let it go too far… If the CBD doesn’t stop it or the CALM magnesium then I have to take a very small additional amount of Valium.
Thank you so much for posting. Sorry this is so long.
There is no stopping place. I’m afraid this will kill me especially at my age. I wish you were practicing and I could be your patient.
Thank you for your story, and I am so happy to hear that you made it through, maybe there is hope, but the hell my family has been through because of another doctor who has overprescribed these harmful medications, poisons really. My nephew is a dead man walking, and I believe will never make it. Please keep spreading the word about how bad these drugs are. We are losing a whole generation due to doctors that prescribe these to helpless people.
Please go to BenzoBuddies they could help your nephew.
Thank you for your story, and I am so happy to hear that you made it through, maybe there is hope, but the hell my family has been through because of another doctor who has overprescribed these harmful medications, poisons really. My nephew is a dead man walking, and I believe will never make it. Please keep spreading the word about how bad these drugs are. We are losing a whole generation due to doctors that prescribe these to helpless people.
Thank you for sharing your story, Christy! I am sorry you had to go through this. This was much harder in reality, I am sure.
Thank you for your work and commitment. Better education of physicans is indeed very important.
May God give you even more strength, and maybe some wings to fly. You will have better days I know it, don’t stop believing. You are a WARRIOR!
Thanks so much for sharing this.
Thank you for submitting your experiences. I agree this should be required reading for patients and physicians considering Benzo use. Years ago I asked a pharmacist’s assistant about tapering off. She said to take two weeks, just cutting a little as necessary. Luckily, I researched further and am thrilled this forum is available. Recently, a pharmacist friend advised that I continue taking my meds for the rest of my life, as withdrawal would be too painful and recovery (after 3 years part-time and 7 years of everyday use) could probably not be rectified. I do not have the financial or social support to weather the journey you’ve described. Will continue to follow this source, in hopes of new answers.
Truly, I am pleased that a benzo victim had found a way to survive. Still being within the repercussions of brain damage due to benzos, still being within a barrel of hell, and still dodging lacking-in-knowledge doctors, I would have to wonder if this doctor could reflect on the fact that, if she wasn’t a doctor and perhaps instead a carpenter or a hairstylist, is she aware that patients are being rejected by her colleagues by the numbers in the thousands? And does she appreciate the very long and difficult road to get the truth of the harm that benzos are doing to her fellow Americans — to her fellow human beings? Some are no longer with us; some have been diagnosed with something other than the benzo brain-damaged status — gone in another sense and/or perhaps psychiatrically admitted, dosed where it silences their true struggle; and some are still struggling, alone — as I, trying to get the truth and coping with in-denial doctors, literally to save their lives, while fighting for their lives and trying to dodge such doctors (I did not say “”ignorant,”” but I wanted to — I guess I just did…). And of course, this brings up the question of “”What can these human beings do to obtain safe help since they’re not a doctor?”” That is all, other than I just hope that, since proven, genuine empathy is not a requirement to become a doctor and since she’s had a minor taste of this benzo hell-road — yes, I said “”minor””, when she sees an opportunity to make a difference with this drug’s lacking disclosure, from the gate of its consumption — not after the first pill — will she bring awareness further than this site? As I imagine — even if her colleagues would frown — by shouting her message from the highest mountain, as loud as she possibly can, hopefully, she will and/or is where, in my limited opinion, this would show much appreciation for her survival? Again, I’m very pleased that she is able to feel her brain and able to live another day.
Christy, I am so sorry for what you went through and beyond proud of you! I have been Benzo Free for 16 days now. My last dose of Klonopin was on April 4th after six years of fighting to get off and a third successful taper. My first two failed. I suffered a lot too but not as much as you. Everyone is different. I feel so much better now that I am off now although like most I still have a long way to be normal and be fully healed. Benzo Warriors, life is so much better after this! Never give up!
I too want to thank you. My journey has been from gabapentin due to shingles/PHN, but there is so much overlap in our stories, it was incredible. Mine started over 3 1/2 years ago, but I’ve been off gab since last December 2019 and am doing…OK.
Despite the different meds and circumstances, I was floored by the similarities. But what finally got to me, was the photo of you and your family at Rosemary Beach. We’ve had a family vacation in the Florida Panhandle for almost 30 years, but the pandemic stopped that. We would have been leaving in four days. Rosemary Beach has become a favorite side trip for us. After almost 4 years of trying to get well, this was going to be my first gab free vacation since that. Destin and that area is my healing place. I’m glad you got to be there.
Dear Christy:
Thank you for sharing. My journey with benzos is very much the same. I was first given Ativan be a family practice doctor in 2001. I was referred to two subsequent psychiatrists by this doctor, who were supposed to help me TAPER OFF the Ativan, but just kept writing the scripts. The sad thing is that in 2008 I totally weaned off Ativan under the care of a psychiatrist. I tapered too fast under his guidance, and had HORRENDOUS withdrawal symptoms, derealization and depersonalization after 5 months off the drug. I then went back to that psychiatrist, terrified, and he reinstated to meds, 4 mg per day Ativan plus antidepressants. If I had found Benzo Buddies during that time, I would have known that I just had to give it more time. It may have been at least two more years of suffering, but I would have been DONE in 2008. Instead, that doctor unwittingly kept me on Ativan and two antidepressants for many more years. Then, in 2015, I found Benzo Buddies, where I found out what was REALLY happening to me, and information about the Ashton protocol for weaning off the drug. I took a summary of the Ashton Manual to the psychiatrist’s office, and he DID help me cross over to valium. However, at 5mg. Valium, I had severe psychotic symptoms that put me in the hospital. I could not take the Valium taper any further, I essentially jumped off at 5 mg. Valium, as I was then given no further benzos in the hospital, virtually a cold turkey. I refused to go to that psychiatrist any more, I was finished. I have not taken any benzodiazepine since July 9, 2018. I am still suffering, now in protracted benzo withdrawal. I am now 68 years old, and 21 months benzo free. I will probably be suffering for at least another year. I could have been DONE with all this in 2008, if only I had known the correct information about benzo dependence that was available through the online network of sufferers like me.
The Benzodiazepine Information Coalition is WONDERFUL. It takes the information shared from the online community like Benzo Buddies, and adds the credibility of medical professionals such as yourself to promote further education for benzo sufferers and the world at large. What you have done is wonderful, Christy. I wish you ongoing good health and a full recovery. I support the Benzodiazepine Information Coalition with financial contributions, and am trying to volunteer with the media campaign to help erase the stigma caused by calling people like us addicts.
Sincerely,
Judy Worth
Judy.
My beyond hell experience in similar to yours, except it was xanax that ruined my life…doctors kept prescribing it, instead of slowly, slowly weening me off. I think many psychiatrists get us hooked for repeat business. They make a fortune while causing profound suffering .
I am sorry to hear that Xanax ruined your life like Ativan ruined mine. One thing I will say about primary care physicians, psychiatrists, or any other physicians who prescribe benzos to patients is that they are definitely misinformed about the action of these powerful drugs. I wish every psychiatrist in the country would read Christy’s story and study the information provided on this website.
Thank you!!! You have a strong story and it is a gift to read. One thing that I immediately thought was: I wonder if she’s taking B12 with meds? Turns out, at the end of your story, you indicated that you had a B12 deficiency. I just finished reading the book “Drug Muggers” by Suzy Cohen and “Could it be B12?”. I recommend them to anyone on prescription medication or over-the-counter. It could very well save your life and ease withdrawal symptoms. Good luck on your recovery.
If any of you think that you might have some degree of psychological dependence in addition to the physical, I found a lot of help at Pills Anonymous. I have 44 years sober. The group support was/is very helpful for living sober.
I am coming off 6 mg clonazapam which is the equivalent to 110 mg of diazepam I have been told by my dr to reduce o.25 every 4 weeks I am now down to 1.25 am 1.5 mg 6 pm and 1 . 25 bed I have been reducing 0.25 every 4 weeks as instructed by my dr who I don’t think has a clue can’t wait to be off them dizzy drugged horrible
Hi Sam,
Sorry for what you are going through.
As you get down to lower doses, the .25 drop may feel like way too much. The percentage of the drop increases the lower you go. No more than 10% is recommended. My daughter could get away with 20% when she got down to .15mgs, but all of it was challenging . Then there was a friend who took 20mgs of Valium daily for 2 years and tapered pretty quickly without too much pain. It is very important to listen to what your body and brain are telling you and taper accordingly. It can catch you off guard and you might think it’s you when it’s the Klonopin. Trust yourself! We had the Klonopin compounded (unfortunately not covered by insurance). We learned the hard way that it is not dissolvable in water, but please look at the Ashton Manual and benzo buddies where you will find some helpful info if you need it. Be well.
Dr. Huff.
The primary reason for telling your gut wrenching story is to TEACH the medical community.
Myself, along with millions and millions of others have been greatly harmed by benzodiazapines. Doctors, most often do not believe us. But you, you as a physician can
change the world for the better for generations to come. Please, teach the medical community, doctors, nurses, the government, the APA, the NIH, the NIMH, the AMA, and any and all organizations how destructive benzos can be ! Your article is preaching to the choir here. Us victims understand. What is needed to do is preach to the entire “congregation” of the world medical community. Please. Thank you. Bless you.
I needed this great story you decided to share! I will write more when I don’t feel so overwhelmed with these withdrawal symptoms. I am praying for you. God bless.
Thank you Christi for sharing your amazing story.
I am 4 mnts. off 1mg klonopin, which I was on for 18 years, for insomnia. The tapering was not so bad, however now, after having been off the drug for 4 mnts., I am having an horrendous time, much like what you talk about.
I am very scared, partly because of my age, and what is going on in our world right now.
I am 77 years old(young), taking good care of myself, however I feel that this experience is taking a toll on my immune system.
If it is possible, I would love to hear from you, Christy,
God bless all of you, and thank you for sharing your stories.
Thank you so much for writing this up. I hope we’ll hear from you again in another year.
I will be 9 months off tomorrow after inadvertently going ‘cold turkey’. I hadn’t considered a taper plan because my doc prescribed for ‘use as needed’ which was typically 2 or 3 doses a week, but sometimes weeks with no use at all. I had also quit drinking around the same time and I think that’s why the brakes really came off because alcohol and benzos both work on GABA.
So glad to hear you are doing better. I’m still in ‘groundhog day’ with no real windows to speak of. Hopefully I will see improvement soon.
Thank you again and again and again…..I am the mother of a Benzo victim and we have all been through hell. I want to say that the “great” Mass General Hospital in Boston….overdosed our now 45 year old daughter starting in her teens. Someday, I need to write up her story….but now, I just want to thank you and see how on earth we can all get legislation, media support, etc.
In MA, some of us have testified at our State House for three years. Lisa Lang of CNN did a wonderful expose, but we need more, much more. You, a a doctor, are making a difference by speaking out….please, oh please keep it going.
Our daughter finally got off with a liquid taper and has been totally off for 5 years. Her brain is gradually healing.
Dr. Armstrong of San Antonio was a Godsend. If you wish, I will connect you with his widow. He, himself, a heart surgeon, had turned to Valium and finally got off, but vowed to help others, so in his 80’s he spent HOURS on the phone with our daughter and saved her.
I have a lot more more to say, but it is so painful to revisit this hell.
I am happy to know that you and your darling daughter got through the worst of this…..
Hi Sally
I live in the Boston area and have been wondering how to tackle the inappropriate prescribing habits of general practitioners. I tapered off Valium over a six month period (15 mg daily) and now at two months off am still in hell with occasional windows.
I wrote a long letter to the hospital in question (Mt Auburn in Cambridge) asking them to tighten their education practices with regard to benzodiazepines. The claimed they conducted an investigation but it was frankly bs I believe they were afraid of being sued. The investigator did admit to me that the prescriptions from my doctor were inappropriate. He was happy because they now limit opioid use, he obviously missed the point that I was trying to make.
I’m so very happy that your daughter came through the nightmare. I will help in any way I can to bring this odious lack of acknowledgement by doctors that benzodiazepines are dangerous and should not be handed out like candy.
Once we get over the current appalling situation I plan to take up the gauntlet again.
I believe Dr Huff has spoken in Boston that’s why we have a bill on the docket to require full disclosure from doctors and signed permission from patients before they take these drugs. But even that is ineffective. People need to read first hand accounts of iatrogenic victims in order to make an informed decision.
Let me know if there’s any way I can contribute.
Hi I’m trying to get support with what I’m going through, the psychiatrist won’t listen to me reguarding what these medications are doing to my daughter. I have alot more to say. It’s alot, I hope someone reachout to me.
Thank you for your story I did NOT taper and paid the price for it. I quit on 12/12/19. I am back to driving and have slight tachycardia once in a while. I wish that, when I saw my internist, he had put me on a beta-blocker for the tachycardia in late January. I did lots of research and had thrown out all of my pills including my Ambien. Was off for 14 days when I had full blown withdrawal. Looking back, I should have gone back on Clonozepam and then tapered. There IS a light at the end of the tunnel. I had been on .5 mg 3 times a day for 18 years! Great support group here and you are an inspiration!
Thank you for sharing your story. I am a person who cares for someone going through a taper from 1mg Klonopin now down to.125mg.
I have experienced this hell second hand, and I cannot believe what I have seen. The sweetest, kindest most vibrant person ever turned into a pale, sobbing fractured self- shaking in pain, pale, suicidal. Unable to socialize. Unable to go outside. This after each cut for at least two weeks, often a month. She was put on the medication for anxiety- no guidance toward therapy for anxiety-just a prescription- and when things went south- inter-dose withdrawals and increased anxiety plus hallucinations, she was tapered of super fast and got intensely ill. I feel like I have almost lost her numerous times. She has wanted to give up but she has fought like hell and is improving and almost off this savage drug. Don’t let anyone try to convince you that these drugs don’t do harm. That it’s “just your anxiety coming back”. I have watched and I know. I am sorry for what you have gone through, Christy and I am praying for your continued improvement.
That was a superbly written piece Christy. It should be law that everyone who is prescribed a benzo must read this first.
You stressed many times that everyone is different and I think you had it hard Christy. For those of you scared by this, I was on 0.5mg of Clonazepam (Klonopin) for 7 months and tapered off in one month (I didn’t know any better). After 18 months that included some very dark days, I think I am finished with it. The majority view is that my taper was way too quick but the moment I was benzo-free I knew that I was healing and that was so helpful. No benzo, no supplements, no uncertainties (is it this? is it that? etc.). I am not recommending this approach. I am saying that what Christy says is true: it is different for everyone. You may heal way quicker than both of us. Live healthily and hope and pray. You will heal.
Hi I’d love for my Dr’s and addiction specialists in the uk south east to recognise this problem I have been battling 20+ yrs I have just lost my daughter she passed away aged 17 2 months ago Dr’s now have me on stable pescription due to brevement but I lost out yrs being ill then better then ill again of time I could have spent with her
I have needed help for yrs and received none
You have no idea how much we benzo withdrawal survivor’s appreciate the telling of your story, and especially becoming an advocate yourself helping others, as most of us have. In fact, it’s become our life mission now. We, the typical psychiatric drug patient who’s been wrongly diagnosed as Bi-polar and heavily drugged don’t carry much weight with our personal ‘stories’, but coming from a Doctor, does.
Thank you so much and God Bless you!!
I’m needing your help, I’m trying to reachout to as many people as I can for help. My daughter is going through an imjustice situation. My daughter’s health is at risk because of the antidepressants that she’s taking and the psychiatrist will not listen to me about anything. It’s alot to put on here. Please I’m a witness to how harmful these drugs are because of what my daughter is going through.
Hope you got new psych doc
So often in reading this I was shaking my head affirmatively and thinking, “Yes, it’s just like that.” I started tapering off .5 mg lorazepam in Sept 2019, 10% every 2 weeks, dry cutting and weighing, and I am down to a pretty small piece of pill. This past month my tapering symptoms have gradually relieved so much that sometimes I forget about them. But even though my situation was only a fraction of yours (I spent some days curled up in the recliner, but I was never bedridden), the differences are only of degree. The cognitive blanks, the heart fluttering, the nausea, the muscular clumsiness.
And the new approach to dealing with the various discomfort and pain: there is nothing to turn to. We have to find another way to cope. I find just accepting that I feel crummy, and waiting it out, works best. Tylenol and Zofran give some relief to some symptoms.
Life is so much better off benzodiazepines. My doctor totally does not understand, and I just haven’t really bothered to try to educate him, it’s not worth it. Within a month or two, I won’t be able to cut and weigh this tiny piece of pill any more, and the rest of the bottle will go in the trash can!
I am a family physician in Austin, Texas who went through a similar experience. I am interested in how I can help more or become involved….
Thanks!
I’m suffering badly from Benzo polydrugged attempted four wd pain body retaining fluid histamine weakness pain leaves me bedridden chest pain short of breath skin issues welts rashes purple feet and elbows can’t tolerate bath or shower face is swollen and red painful eyelids skin extremely dry growths on body moles warts muscle loss total weakness cannot relax gut bowel issues burning urinating and burning lady parts pain in joints acid feels like going thru veins burning body hair falling welts on scalp troubles eating sinus inflammation dizzy feel like passing out bp drops can’t walk breathless just sitting chest squeezing heart pounding can’t use any skincare fingernails have brown lines poor shape of nails cannot relax body is in turmoil feels like paranas chewing up by body inside fluid retention packed on 12 lbs cannot go outside react to sun temperature changes eating causes rashes and heart to pound in my gut and chest it’s scary flushing feel like passing out in bed shutting asthma symptoms pricking burning in chest neck scalp wrists it’s horrific reacting to my bedding my clothes dishwater can’t lift anything heart rate goes to 130 just walking in house can’t do anything haven’t left my house in months husband had to take me to doc anything advice please is this part of it
Hello I’ve been tapering for
One year and three months and what a nite mare never thought something could be so bad
Had to have prostate surgery at eleven months and went into septic shock after and thought I was going to die every day
Took last 2 mg ten days ago and I feel terrible but know in back of my mind have positive attitude towards the future. Mike
Hello I’ve been tapering for
One year and three months and what a nite mare never thought something could be so bad
Had to have prostate surgery at eleven months and went into septic shock after and thought I was going to die every day
Took last 2 mg ten days ago and I feel terrible but know in back of my mind have positive attitude towards the future. Mike
Hi Dr. D. I came off benzo over a year now (in Feb). Dr. Christy and I have much like the same story. Even manners of tapering it down and the symptoms along with it. And until now Im still suffering, mild to moderate on most days. But there’s another problem after withdrawing benzo. My compassionate health coach suggested that I have SIBO(small intestines bacterial overgrowth) based from the GI symptoms that I have along with the withdrawal symptoms. At first I thought, my GI symptoms were just part of the withdrawal symptoms. However, they became worst and sustaining even after withdrawing benzo. Do you think antidepressant and benzo have contributed to having SIBO?Please enligthen me. Thank you so much
I have been off xanax for 2 yrs One withdrawal symptom that keeps me in bed is spasms and stiffness of my throat and tight chest Very scared Has anyone had this happen I was taken off the drug in 6 days would someone please let me know?
I have been off xanax for 2 yrs Horrible spasms and movement in my throat Its a horrible stiffness in throat and chest so hard to breathe In bed has anyone else had this Please I am so scared i will never be able to get up again
Thank you for sharing this Dr. Huff. Reading this story from a physician is so validating since none of the drs I encountered in my similar journey understood or believed what I was telling them about Benzo symptoms or recovery. Thank you also for the work you are doing with BIC it’s inspiring and life saving. I just hit two years off and I’m pretty much fully recovered. You will be too.
Thank you for sharing. I am 8 months off of a CT. Just getting my life back. It’s still hard and I m sick but doing it anyway.
B
Very helpful blog entry. Thanks for updating.
Thanks for sharing your story. But my question is, hiw did you feel while you were taking xanax? Did it help with your sleep and anxiety?
Great article and thanks for sharing your experience.
Im in the middle of a wave so this might be a bit messy.
Been of for almost 12 months after heavy benzo addiction/abuse during two/three years. I never thought Id make it.
The early extreme symptoms for me was not the worst part even thou those are underscribable but the period between 6 months and forward. The alienation and severe brain trauma made me think that my life was over, that i would never love or feel lust again, not even being able to read a book.
At this point in life I am doing so much better. Feeling are more at place, I feel lust, I feel love, I can interract with people, I can read, I can THINK.
But when depression hits, or the waves wash over me its hard. It feels like ground zero. Thats when an article like this lifts my spirit. Like really. It helps so much to hear another persons words concerning this.
All the love and best wishes.
Thank you for sharing! This information is vitally important! I would love to connect with you via email. I am an RN in Florida caring for my 32 yo son experiencing the same symptoms. It’s been a long journey. Stay well:)
Thank you for taking the time to share your experience. The more of us that do this, hopefully the message about the dangerous nature of these medications will permeate mass consciousness.
I have tapered from 16mg of Clonazepam. I am currently at 0.52mg. I have been doing a micro taper since 1mg. I too have found this micro taper has smoothed out some bumps.
But, wow what a nightmare this experience has been.
I just hope everyone here realises the inner strength and resilience they have to keep pushing through each day.
Best of luck to everyone and I wish you all a full recovery back to vibrant health.
Honey l am on 4 mgs of klonopin for an attack from a drug addict and l almost died. I was given 4 mgs of
Klonopin. I tried 7 times to come off. 5 detox centers..don’t do that..l tried the ashton method. Did the best but too fast l would need a micro taper
Doctors insisted k could come off it and super fast. I have a doctor who gives me 4 mgs. Plus propranol when your heart beats fast. 50 mg hydroxizine 3 x a day. 7.5
Mirtzipam which is generic for remeron. Try taking a smaller amount. I tried everything. Lots of suppliments l read on the internet how to get off with
Pharma gaba 750 mg a day.
1000 niacin divided in doses n 2000 mg vitamin c broke up daily for the flu feeling.
Was afraid l tiok it 2 months n relaxed me but l was cutting .25 every two weeks and too fast. I may try way smaller. Have ptsd, anxiety and suicidal idelation n doc told me go get 2 dogs at the pound to save their lives and in turn save mine. That helps…they know l dont feel good. They lay with me and comfort me. He wrote a letter they are service dogs so if you are in a rental service animals you don’t pay deposits..are free.
So l come to across roads..been on it 20 yrs cant take more…but seems l crack coming off slow. I am 68…stay on ot or remove a little again which is torture.
Worst thing
..so do l stay on it or do l try to come off 1/8 every 2 wks.
Take 30 yrs to do that. Too old. Maybe stay on it til l die as l can function. I remember what happened in the past…please text me.
702 624 7181…or call or email ok? We have a lot in common. Contact me please. Call me would be good.
My name is Gayle and l live in Henderson NV. Sendiong you love