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.
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.
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.
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!