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Summary
Story of benzo withdrawal from the founder of Easing Anxiety, D E Foster. This is a story of 12 years on clonazepam (Klonopin) taken as prescribed, a complicated 18-month taper, and ongoing protracted withdrawal with a wide variety of symptoms.
Details
Key Topics: Anxiety, Benzos, Dependence, Withdrawal, Doctors, Klonopin (clonazepam), Protracted Withdrawal, Celexa (citalopram), Prozac (fluoxetine), Digestive Issues, Updosing, Protracted Withdrawal, Cipro (ciprofloxacin), Fluroquinolone, Symptoms
Initial Source: Book: “Benzo Free: The World of Anti-Anxiety Drugs and the Reality of Withdrawal” by D E Foster — https://www.amazon.com/dp/173227861X/ref=cm_sw_em_r_mt_dp_9MEJFbWB3RNDV
Listen on the Podcast: https://www.easinganxiety.com/post/my-benzo-story-a-personal-account-of-withdrawal-bfp002
D's Bio on Easing Anxiety: https://easinganxiety.com/defoster
Content Warning
Stories presented on Easing Anxiety may contain triggering content for certain segments of the population. If this is a concern for you, please refrain from reading any further. These stories are provided for informational purposes only and should never be considered medical advice. Opinions stated are those of the author only. See our disclaimer at the bottom of this post for more information.
Intro
This is my benzo story as told in the book, “Benzo Free: The World of Anti-Anxiety Drugs and the Reality of Withdrawal.” I thought I’d add it to our stories section for those who might want to read it but haven’t read the book. I hope you enjoy it.
BTW, the book is written in a Q&A format, so the following excerpt is told in this conversational style.
Thanks for reading, D 🙂
D’s Story
So, what’s benzo withdrawal really like? Tell me your story.
Oh good, this is where I get to talk about myself. I wish I could say that I am too shy or humble to enjoy this, but I’m not.
I can tell. When did it all start for you?
I don’t know the actual date when I was first prescribed a benzo. It was sometime in 2002. I was struggling with stomach issues. Pain, spasms, irritable bowel, heartburn. This was not new for me. I had my first upper-GI test at six-months-old and my first pre-ulcer condition at the age of five. Stomach issues were just something I lived with. We all have our burdens; that was one of mine.
I visited my primary care physician complaining about my stomach. We’ll call him Dr. Y. I guess he thought he would try a different approach and prescribed an anti-anxiety drug to see if it might help my ongoing struggles. I have dealt with mild anxiety issues here and there, but it was never serious. I wasn’t even complaining about anxiety to Dr. Y, but perhaps he thought it might be a factor.
I didn’t know it was a benzodiazepine. I didn’t even know what benzodiazepines were.
Back then, I just trusted my doctor. I didn’t question his judgment. So, I blindly took the medication. That drug was clonazepam (generic for Klonopin). I didn’t know it was a benzodiazepine. I didn’t even know what benzodiazepines were. There were no warnings. No mention of addiction or physical dependence. He said it might help my stomach, and that’s all I knew.
How long did you take it?
I was on clonazepam for over twelve years. Eleven years on the medication and then tapered for a year and a half. I started at 0.5 mg daily and eventually upped my dosage to 2 mg daily in the last couple of years before tapering.
Were you in tolerance?
Yes, but I didn’t know it at the time.
I had various symptoms that I now know are common with benzodiazepine tolerance. They were milder than what I experienced during withdrawal, so I either ignored them or got them checked out by the doc. I didn’t think too much of it, and I never attributed the symptoms to the clonazepam.
I changed doctors occasionally during that time. Each time the new doctor would continue the prescription. In those first 11 years, not one doctor suggested that I should re-evaluate the medication I was taking. So, I kept taking the drug, naive to its effects on my mind and body.
When was the tipping point? When did you realize what was going on?
In the summer of 2012, I went to a new doc, Dr. G, for a physical. When I told her about the clonazepam I was taking, she said, without any alarm or apparent concern, that I should start to wean off that drug. This is the first doctor in eleven years to suggest that I shouldn’t keep taking this medication. Still, I didn’t think much of it. Dr. G first wanted me to get on an anti-depressant, so she prescribed me fluoxetine (Prozac), 40 mg daily. She said it would help me in coming off of the benzo. I wasn’t too worried.
But then, a few nights later, my whole life changed in an instant.
I was trying to sleep on the twin bed in the front bedroom of our two-bedroom apartment. I had been snoring lately, so my wife and I were sleeping in separate rooms until I was able to lose some weight. I hated this, but it was the only reasonable decision since I kept waking her at night. This was my fourth day on Prozac, so I had just increased to my full dose of 40 mg that morning, per my doctor’s instructions.
Anyway, sleep was evading me. I opened my iPad and decided to research Klonopin. I had nothing else to do, so I thought I’d kill some time. I can’t believe that in the past 11 years I never researched this drug I was taking. A mistake I’ll never make again.
It didn’t take long for the panic attack to start.
It didn’t take long for the panic attack to start. I came across horror story after horror story about benzodiazepine withdrawal. I was freaking out. In hindsight, I realize that this was my first, full-blown panic attack. I’ve had anxiety off and on in my life, but never something like this. I was terrified about what had been done to me and worse off, what was to come. I paced in my room for hours, and I knew that my life would never be the same.
I soon realized that my panic attack wasn’t only caused by the fear of withdrawal, but also by an adverse reaction to Prozac. I’ve since learned that the prescription and dosage were inappropriate for someone in my condition. I stopped it the next morning just to be safe. Depression and a pervasive state of hopelessness set in soon after.
That was the start of my new journey. The withdrawal chapter of my life.
How long did your depression last?
I’ve been to psychologists a few different times throughout my life for depression. I was never diagnosed with any specific disorder, but I’ve struggled now and then. My first counseling session was in college after my girlfriend dumped me. For six months I was in a deep, dark hole and couldn’t find any pleasure in life. I was never quite suicidal, but I could understand how people could consider it. It was an incredibly scary place to be and one I never wanted to visit again. Unfortunately, I wasn’t that lucky.
I’ve never felt any stigma from visiting a therapist, so in the following years when I needed help, I’d find a local counselor and work through whatever the issues were at the time. Since this wasn’t my first depression, I had a few tools and knew what to do. I started to build my team, my support system. I already had the most amazing wife in the world (no she didn’t make me say that either), so now I just needed a few others to come along for the ride.
I found a new therapist nearby, and I started to journal, which I continued for the next five years throughout withdrawal. Since my memory was — and still is — somewhat rubbish, that journal became an integral part of the foundation for this book.
When did you decide to withdraw?
That first night. But I’d read enough to know that I needed help to do so. About a week after my panic attack, I visited my previous doctor, Dr. V. I didn’t want to go back to Dr. G after the issue with Prozac, and I was comfortable with Dr. V. It was a three hour round trip to his office in the mountains, but I needed someone I could trust.
Dr. V is the idyllic small-town doc. He has a calming, wise presence and took his time each visit to listen to me, a quality that is difficult to find with today’s trend of seven-minute appointments. He was the perfect fit for someone like me. He spent over 30 minutes with me during that visit. I told him everything I had learned about benzos and about how freaked out I was regarding my addiction. He listened and discussed the issue with me at length.
Like most doctors at that time, Dr. V didn’t believe there was a serious problem with long-term benzodiazepine use. He said that I didn’t need to withdraw from the benzos at all and that he had patients who had been on them much longer and at higher doses with no problems. Even though his words contradicted some of what I read over the past several weeks, I still felt that he was listening to me and wanted to work with me.
He wanted me to wait for six months before beginning my taper.
I told him that I didn’t want to stay on the drug. I wanted off. And that after reading The Ashton Manual, I had a plan and I wanted to start immediately. He said he would work with me, but he wanted me to wait for six months before beginning my taper.
Six months? He made you wait six months before even starting to taper?
Exactly. And it sucked.
I hated that I had to wait. I believed that these drugs were destroying my body and mind from the inside and I wanted them out of me…now! I didn’t want to wait one more week, let alone six months. I considered finding another doctor, but where?
A few days passed, and I calmed down a bit. I thought back on something Dr. V said in the appointment that — as hard as it was to admit — made some sense. He said he wanted me to stabilize mentally before starting my taper. He knew that people who attempted to withdraw have an even harder time the second, third, or fourth attempt. I later learned that this was called kindling, but at the time I just wanted it all to be over.
Dr. V thought an anti-depressant might help…
Dr. V thought an anti-depressant might help, and after I shared with him my experience with fluoxetine (Prozac), he prescribed me a low dose of citalopram (Celexa). I took it as specified for the next couple of months, but eventually tapered off it before starting my clonazepam taper. I didn’t have any adverse side effects from the SSRI, but I was determined to do this as medication-free as possible.
I realize now that Dr. V was walking a very fine line with me during that first appointment. I believe that he tailored his recommendations since I had heightened anxiety and first needed to address that issue. He didn’t want to scare me with any more horror stories, and he knew quite well that if I started the taper in my current mental state, I probably wouldn’t make it.
I am forever grateful to Dr. V for his wisdom, support, and especially his calm and compassionate manner. He was exactly the partner I needed for my withdrawal, and I am blessed that I had him in my life when I did.
So, did you stabilize?
The next month or two were hell. I couldn’t stop obsessing about the benzos, what they were doing to my body, and what my future held. I was full of anxiety, and my depression wouldn’t let go. I had some more panic attacks, lost work, and closed off from the world. I now realize that I was in tolerance at that time and already dealing with some withdrawal symptoms.
But, I did do a few things right. I started my sessions with a new psychologist. Celeste was great and incredibly supportive of my struggles. I also got a membership to a nearby gym and started working out and swimming again. It was during this time that I discovered yoga and meditation. Both have been vital to my recovery and to my life.
Over the following months, my tools slowly helped me to come to terms with my situation and stabilize my mood. I worked through some childhood and family issues with Celeste and developed some new tools to help with my anxiety. Finally, six months were up, I was more stable, and it was time to return to Dr. V.
How did it go?
It was February of 2013. I had my plan in hand. I had researched benzo withdrawal to excess, and I knew exactly what I needed to do. My mood improved, and I believed I was ready. Dr. V said he was impressed, and that he could see that my mental state had stabilized. I had taken charge and was in control of my own recovery.
He initially suggested a faster taper than I planned on, but I calmly told him that based on my research, a slower taper would be the best course of action for me. I suggested 0.25 mg every two weeks with the flexibility to stop and stabilize at any dosage for as long as needed. It was a little faster than recommended by Ashton, but I felt that it was appropriate for me at the time. I also decided to taper without the help of diazepam (Valium) as a substitution drug. The thought of adding another benzo to my system, regardless of its benefits, was more than I wanted to undertake.
He agreed to my plan and prescribed the proper dosages to start my taper. I was on my way. Yeah!
How did the taper go?
I wound up taking much longer than planned, and I’m glad I did. Over the next 18 months, I tapered off clonazepam on my own schedule. In the beginning, I didn’t have many problems. But once I got down below one milligram (half of my original dose), my symptoms became stronger and I had more difficulty. It was a hard road.
Did you ever reinstate? Updose?
Unfortunately, yes.
In September of 2013, I started a new job at a marketing firm in Boulder. I was finally able to return to the business world, and I was hired to develop database systems for the company. It was exciting and terrifying at the same time.
My first day was hell. Filled with anxiety. Throat tightening. Tremors. Dizziness. Restlessness. My new office was a tiny half-cube in the middle of the hallway. I felt everyone was staring at me. My boss was in New York, and I didn’t really have much guidance. Panic attack. Not my first, and not my last. I finally got through that first day, but I came home and told my wife that I didn’t think I could do it. She listened, as she always does so well, and helped talk me down. Unfortunately, day one was a cake walk compared to day two.
The next day I had to fly to a convention in Baltimore. I know, crazy, huh? The anxiety was overwhelming. My physical symptoms were on fire. Shaking, spiders on my face, throat-tightening, muscle pains, tinnitus, etc. Flying never used to be a problem for me, but now my nerves were raw, and every little stressor was amplified. I almost canceled the trip multiple times, but it was a new job, and I knew I had to go through with it. No pressure, right? I hadn’t traveled since I started withdrawal, and I was terrified.
In the weeks before the trip I had nightmares. I woke up in cold sweats wanting nothing more than to make the trip go away. But it had to be done. I forced myself to go to the airport and get on the plane and surprisingly, I made it through the flight okay. I meditated half of the way there. After I arrived in Baltimore, I checked in and went to the convention center and tried to fit in. But the worst wasn’t over.
That night in my hotel I had another panic attack. And this was a bad one. I could hardly breathe, the world was spinning, I couldn’t think straight, and I was all alone. What if something happened? Would anybody notice? What if my throat closed entirely and I couldn’t breathe? What if my heart palpitations are a heart attack? What if? What if? I was pretty sure I was going to die.
I finally convinced myself…that if I updosed just a little, it might help me get through.
I finally convinced myself, as so many of us do, that if I updosed just a little, it might help me get through. So, I did just that. I took another 0.25 mg going from 0.5 mg daily to 0.75 mg. It doesn’t sound like much, but with such a potent benzo as clonazepam, it doesn’t take much.
It helped for a little while. I made it through the rest of the trip and returned home. But the truth is, I probably would have made it through the trip without updosing. It just didn’t feel like it at the time. It was six months before I started to taper down again. Updosing was a mistake, but we all make mistakes. I was in a challenging situation, and I did the best I could.
When did you jump (take your last dose)?
My last dose of clonazepam was on August 20, 2014. It was a great day, and I am so proud of that accomplishment. Unfortunately, it wasn’t the end of the symptoms. In fact, it was barely the beginning.
What were your withdrawal symptoms?
Like most people going through benzo withdrawal, I suffered from a wide variety of symptoms that came and went through various stages of the process. This may look like a long list — and it is. Most people have far fewer symptoms than I did. Some of these symptoms were mild and periodic, but others were quite severe. Some of them lasted for only a few months, others, which I like to call my “greatest hits,” have been with me for years. I’ll go into more detail on these later but for now, here’s a quick rundown:
Akathisia (inner restlessness)
Anger/Irritability
Anxiety/Depression
Benzo Belly (digestive issues, abdominal distention)
Body Sensations (tingling, numbness, pain)
Cognitive Issues/Memory Loss
Dizziness/Vertigo
Emotional Blunting (being emotionally numb)
Facial Paresthesia (the sensation of spiders on my face)
Flushing/Sweating
Heart Palpitations
Inflammation
Insomnia
Muscle Tics/Tremors/Shaking
Muscle Tightness/Aches/Pain/Pulls/Tears
Panic Attacks
Pelvic Floor Dysfunction/Groin Pain/Abdominal Pain
Personality Changes
Restless Legs
Sensory Hypersensitivity (nasal for me)
Slurred Speech
Throat Tightening
Thrush (oral infection)
Tinnitus (ringing in the ears)
Urinary Issues
You weren’t kidding. It’s hard to believe you had all those symptoms.
I know. I even have trouble believing it, and I lived through it. But it happened, and it’s still happening. I wish to hell it wasn’t.
Do you think your symptoms are lasting longer than most others?
Yes, definitely.
I’m one of the 10–15% of long-term users who suffer from the protracted version of withdrawal. That puts me in the minority. My experience is extreme and is not a typical example of benzo withdrawal. Some have had symptoms 10 years or longer, but it’s rare. Most withdrawal experiences will be shorter in duration than what I experienced, and that’s excellent news.
Do you think your symptoms are more severe than others?
I know people who have tried to withdraw multiple times from a combination of drugs, including multiple benzos, and have yet to find success. I know people who haven’t been able to leave their bedrooms for days due to overwhelming pain and anxiety. I know people who have had seizures, convulsions, and even temporary paralysis. I know people who have lost jobs, friends, and even marriages. And I am very sorry to say, I also know people who didn’t make it and took their own lives.
It’s tough to gauge the severity of my symptoms against others.
It’s tough to gauge the severity of my symptoms against others. Our experience of benzo withdrawal is incredibly subjective. But do some have it worse than me? Absolutely! Many have had it far worse than me. And it pains me every day to think about what they’re going through.
What do you think caused your protracted state?
I have a few theories. I did make some mistakes during withdrawal. I tapered too quickly, especially toward the end. I updosed, which can cause problems. I also blindly took a specific antibiotic, which I later learned can aggravate withdrawal. And then there’s the Klonopin factor. Most agree that those who take clonazepam (Klonopin) long-term have a higher incidence of protracted withdrawal than the other benzos.
Still, the real answer is that I have no idea. There are so many factors that can dictate what our withdrawal experience will be like, such as genetics, stress levels, mental stability, use duration, dosage, support systems, and diet. I may never know the real cause(s) of my extended symptoms, and that’s okay. For now, I’m just focused on healing.
Did you work during your withdrawal?
Some. I worked on this book throughout my withdrawal when I had time. It helped keep me sane. I think the process of researching, logging, writing, and reaching out to people in the benzo community kept me centered and focused.
Before my taper, I was working as a contract screenwriter while teaching at college. I also helped organize and taught at various film festivals and conferences. I enjoyed working in the film industry and loved the writing and teaching. Unfortunately, my occasional writing contracts and adjunct college instructor salary didn’t do a lot to support my family.
So, I returned to database work and got settled in the marketing firm in Boulder. I was moved out of the half-cube in the hallway and into my own private office, which helped significantly in managing my distractions and anxiety. The office where I was employed housed a division of the company that was focused on the natural food industry. So, I was surrounded by a lot of amazing people who were interested in eating and living a healthy life. I didn’t know it when I started, but that was the perfect place for me to be at that time. They offered yoga, massage, a gym with a ping-pong table, and allowed me to bring my dog to work. I enjoyed the environment and especially the people I was privileged to work with.
I was tapering most of the time I was employed there. There were some hard times. Some real hard times. I tried to limit my sick days and worked from home on occasion as needed. I often traveled to corporate headquarters in NYC, which was very difficult at first, but over time I found ways to manage the stress. I converted my office into an anti-anxiety retreat with aromatherapy candles and soft lighting. I often worked through my lunches, but occasionally I would take this time to take a walk around the tree-lined streets, participate in a company-offered yoga class, or pop over to a nearby community center for some mid-day meditation. I buried myself in work which helped keep me focused. I did everything I could to mitigate my symptoms, and I believe I managed the situation quite well.
I lasted four hours at the new job.
But when promised advancements continually got delayed, I started to get restless and began to return calls from the recruiters who were contacting me. Database skills were in high demand at the time. After 18 months at that company, I accepted a new job with a financial services company in downtown Denver, which almost doubled my salary. I traded an excellent work environment for more money. It felt like a no-brainer at the time.
I lasted four hours at the new job.
Four hours? Seriously?
This was not my proudest hour. I had a panic attack the first morning and quit before lunch. I have never done anything like that at a job before. On the bus ride home that morning, I just kept telling myself that this is not like me. What was going on?
I was now in acute withdrawal. Tapering was a cake walk compared to this.
It turns out that I had finished my taper and I was now in acute withdrawal. Tapering was a cake walk compared to this. My symptoms had kicked into overdrive. Plain and simple, I couldn’t handle the stressors of ordinary, everyday life. And a new job, in a very stressful, open-office environment with co-workers staring at me all day long, was something my mind and body just couldn’t handle.
I so badly wanted to return to my office oasis at the previous job where I could manage my symptoms in private. But that ship had sailed. I couldn’t go back and ask for my job back. So, I went home, told my amazingly understanding wife that I was out-of-work, and started all over again.
Were you able to find another job?
Yes, for a while. I did database consulting for the next couple of years. I had two contracts with very prestigious companies, one for 12 months and the other for three. I was asked to extend both, but in the end, I had to leave each due to my health.
These failures at work really took a hit on my already struggling self-esteem. I knew that the main culprit in all these scenarios was my withdrawal, but that was little consolation when I couldn’t provide for my family. Cognitive dysfunction, lack of short-term memory, and anxiety were the most significant problems at work. Oddly, I could still program in my core computer languages and develop database models in my sleep. Unfortunately, I couldn’t learn new systems.
I still struggle with cognitive dysfunction today. It’s like there’s a wall.
I still struggle with cognitive dysfunction today. It’s like there’s a wall. It’s incredibly frustrating and just plain frightening. And as the pressure increases, the insomnia increases, and all my symptoms shift into overdrive. In fact, at my last contract position, I excused myself from work one morning in a state of panic with uncontrollable shaking. I was dizzy, nauseous, and almost in tears. I had to call to have my wife pick me up and drive me home because I wouldn’t have been safe behind the wheel. That’s not me. I’ve always excelled in my career. I’ve developed some of the top systems for some of the largest corporations in the country, but I just can’t anymore. And that’s a very bitter realization to accept.
So how are you doing now?
I was four years benzo-free in August 2018. Just saying that feels good.
Overall, I am doing well. Most days are good days, but I still have bad ones too. I struggle with my symptoms now and then and there are times that I let them get the better of me. Anxiety and cognitive issues are still a challenge, but I keep active and do my best to work around them. I also continue to have some insomnia, akathisia, tinnitus, paresthesia, and a few other mild symptoms, but I’ve learned to accept them, and they don’t bother me as much anymore.
When I hit a wave, and my symptoms kick in, I remind myself of what it was like in the middle of withdrawal — on the worst of days — and remember how far I have come. I’m doing okay right now, and I know in my heart that I’m getting better every day.
Update: October 2020
This story was originally published in my book in the fall of 2018. It is now two years later, and I am six years benzo-free.
Much has happened since then. I have definitely improved and I am much happier than I was. Do I still have symptoms? Yes. I wish I could say otherwise, but that’s not the case. I still have issues with anxiety, cognition, and memory in addition to some lingering physical symptoms like facial parasthesia, periodic akathisia, pelvic floor dysfunction, and a few others.
That being said, I am happy now and doing much better than I was during acute withdrawal. Part of my improvement is actual physiological healing. But part of it is also psychological. I’ve accepted my condition and learned to live with my limitations. I hope these limitations are temporary, but even if they aren’t, I know I will be okay.
Trust me, it’s not as bad as it sounds. There is good and bad in everything in life. The trick is to find the good and celebrate it, while not allowing the bad to take you down.
Thanks for reading my story. Please, leave a comment on our feedback form if you like. I’d love to hear from you.
Keep calm, taper slowly, and take care of yourself, D 🙂
References
Foster, D E. Benzo Free: The World of Anti-Anxiety Drugs and the Reality of Withdrawal. Erie, Colorado: Denim Mountain Press, 2018. https://easinganxiety.com/book.
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All stories shared on Easing Anxiety are done so with the author’s permission. These stories are provided for informational purposes only and should never be considered medical advice. The views and opinions expressed within are those of the author only, and do not necessarily reflect those of Easing Anxiety or its founder. Stories presented on Easing Anxiety may contain triggering content for certain segments of the population. While provided as an informational resource to our community, some stories may not be beneficial to those who are sensitive to their content. Regarding benzodiazepine withdrawal or BIND, most people can withdraw safely, successfully, and without serious complications if they are informed and have a solid support system. Many of the stories shared on Easing Anxiety are extreme and should not be used to create any expectations of one’s individual experience. Please read the Ashton Manual formore information and work with your doctor. Withdrawal, tapering, or any other change in dosage of benzodiazepines, nonbenzodiazepines (Z-drugs), or any other prescription medication should only be done under the direct supervision of a licensed physician. View our complete disclaimer for more info.
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