BENZO STORY: Nora from Washington, D.C.
Updated: Mar 23
A benzo story of withdrawal from Klonopin via Valium substitution, a failed visit to a detox facility, and a long, drawn out recovery. Followed by an update with a comedy-of-errors tale of dentists, dogs, and anxiety.
Key Topics: Anxiety, Benzos, Klonopin (clonazepam), Dependence, Withdrawal, Doctors, Detox, Clinic, Cold Turkey (CT), Polydrug, Valium (diazepam), Update, Pets, Travel, Comedy of Errors, Dentist, Isolation
Listen on the Podcast (Original Story): https://www.easinganxiety.com/post/the-assault-on-our-senses-benzo-withdrawal-symptoms-of-the-eyes-ears-nose-and-mouth-bfp016
Listen on the Podcast (Update): https://www.easinganxiety.com/post/sights-sounds-and-sensitivities-nerve-sensations-of-benzo-withdrawal-bfp033
Stories presented on Easing Anxiety may contain triggering content. 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.
NOTE: Nora is a fictional name. The author requested to remain anonymous.
First, let me thank you for what you are doing. Your work is a great contribution to our “community”. I would so like to be sending you a story of recovery, healing, success so as to give others hope that they will heal no matter how awful their journey may be, but that is not the case yet. Here is my story.
I was prescribed Klonopin ,1 mg in 1998, while I was going through a break-up of a long-term relationship. My sleep was being affected and that was affecting my mood and work. I was at the time not feeling any physical symptoms of anxiety or at least not anxiety as I have come to know it in its worst manifestations. I was scared and uneasy, of course, as my life and security were coming unhinged, but therapy and meditation would have been the right prescription.
I was prescribed Klonopin…while I was going through a break-up of a long-term relationship.
I went to a doctor and told her I was concerned about my lack of sleep and she quickly told me she had just the thing. Non-addictive and very safe. I was not someone who took prescription medications and so was clueless about the drug she prescribed. I wasn’t even aware that it was a psych drug. I took the Klonopin as prescribed for 14 years.
Initially, my dose was 1 mg. At about seven years, it went up to 1 1/2 mg and at the end I was up to 2 mg. I, on a number of occasions, expressed to various doctors over the years that I didn’t want to be on medication and they all told me I had an anxiety issue and that it would get worse with age and that it was not a good idea to stop taking the drug.
…one night when I returned from a trip and couldn’t find my pills. It was a night from hell.
I had no idea that it was addictive or the level of dependence I had developed until one night when I returned from a trip and couldn’t find my pills. It was a night from hell. That was my first clue that I had a problem, but I continued on as recommended by my doctors until 2011. For the most part ( 10 years), I had no ill effects that I was aware of from the Klonopin other than I did start feeling anxiety at times and I had sleep issues again. The last four years I was on the drug as prescribed. I was suffering from greater anxiety and perhaps other things were creeping in , but I thought it was all due to the emotionally unhealthy relationship I was in.
In 2011, that relationship came to a crashing end. This time it was hugely traumatic. About three weeks after he left me, I was told by two friends that there was a concerning article in the paper about Klonopin. I read it and was terrified. The relationship was over, I sold my house, I got rid of most of my belongings, and I called a friend who had a treatment center in LA. He quickly said, no problem, 2 mgs , 2 months.
I flew to California and was cold-turkeyed the day after I checked into treatment.
I flew to California and was cold-turkeyed the day after I checked into treatment. I was given nine drugs in all to “stabilize” me. I was told very little about what was going on or about the dangers of the drugs. I was in essence treated like a drug addict and told I was being very negative as I was going through horrible acute withdrawal. The word withdrawal wasn’t even used in the treatment center. I was told I would start to feel better in about 10 days.
Two and a half months later, I told them I had to leave. My father was dying back on the East Coast and I needed to go home. I was not getting better and I feared if I stayed there I would never leave. I was put on a plane from a wheelchair and home I came. I was a mess and continued to be for four months. Again, no warning that this could be a long ride. I figured I just had to be tougher, but I was not managing well at all.
I went to see a psychiatrist four months later who reinstated me on 1 mg. I was better — not whole, not normal — but much better. He told me I would have to get off the drug again eventually. I stayed on the 1 mg for a year, a year that I was able to go away and work at a retreat center. I, at this point, felt like an ill person, very unstable but better than before I was reinstated. I had started to develop phobias and I was weak and cried all the time, but I was working and living in community and it was palpable.
A year after being reinstated, I rented a little house in Upstate, NY with a friend I had met at the retreat center. I began the journey of tapering. I had no idea how to taper, but a doctor I saw who was filling my Rx’s said just cut back 1/12th of the 1 mg per month over a year. That was not the right way to taper because I dropped the same amount every month (i.e. 1/12th of a mg).
The year that followed was spent in NY, then Mexico and a few places in between. I had developed a need to be on the move and the sicker I got the more I couldn’t stand to stay still. I was getting more and more depleted and disabled physically, but somehow I managed to travel. In Mexico, where I got off the last bit of the Klonopin, I started seeing a naturopath. She recommended I take Valium, but had no idea how much or what a cross over was.
By the time I was off the Klonopin, she had me taking 15 mg of Valium. I moved back to the US and moved to Asheville, NC. ( Remember I have no home and have a need to move to feel like I have a life). I saw a number of psychiatrists (4), 2 trauma therapists, an EMDR therapist, did brain wave therapy, went for acupuncture 3 days a week, yoga daily, and it goes on and on. All the psychiatrists wanted me back on Klonopin and wanted to add an anti-psychotic and an anti-depressant. It took me two and a half years to get off the Valium and every step of the way was hell. I had nothing but getting sicker and sicker.
I have lost friends, home, the ability to work, the ability to have anything close to a normal day.
With the exception of the year I was reinstated on Klonopin, my journey has been hellish every day. No windows, just hell and worsening hell. I have now been off benzos for 38 months. The first year off was awful, the second worse, and this last year has been perhaps the worst. The utter despair and hopelessness that enters when one has been sick and out of the game of life for so long is devastating. I have lost friends, home, the ability to work, the ability to have anything close to a normal day. I can, at times, go out to eat or go to a friends or to a movie, but everything is uncomfortable. Going grocery shopping is still a nightmare, but being alone I have had to do everything for myself. No matter how awful I have felt, I have always been able to drive.
I do not have windows. I have bad days and really bad days and that means wanting to be in bed most of the day. I cannot imagine a life after this, having love in my life again, working, having fun, feeling joy. I don’t know what keeps me going, truly I do not. Perhaps it is the not wanting to cause more pain to my family. I am feeling pretty hopeless that I will ever feel better.
I thought at six months, and then at 18, and then two years and then three years and here I am at 38 months feeling like a walking zombie. I have had depersonalization every single day of this. Some of my physical symptoms have gone away, but it feels like the psychological ones have gotten worse. One wonders if that is just the trauma of the years in hell or the giving up hope. I have a tiny bit of hope I guess or I would not be writing this.
So, not the story I want to be writing to you, but it is my story thus far. Part of me needs to just reach out, to validate this nightmare. There is not a day that goes by that I don’t think perhaps I am just a crazy person, too much instability and broken heartedness. Is it truly possible for a pill to do this? Then there are the many days that I think that my only option is to reinstate again. I am growing old, losing eight years is a long time…
Update from Nora — August 2019
D, thanks for writing back so quickly. I know in your podcast you mentioned needing stories so I thought I would write you a bit more and maybe you could use some of what I am going to write in a podcast. I have during this whole journey questioned what constitutes “over doing it”.
I have during this whole journey questioned what constitutes “over doing it.”
In thinking back over the summer, and pondering why I am having a string of pretty bad days, it did occur to me that perhaps I am over doing it a bit. I am so disgusted with being so non-productive and unfocused and idle for so long that when the opportunity arises to do anything, I jump.
So, here is a recap of the summer thus far — let me know what you think regarding: Is this too much for a healing brain? Maybe you could do a podcast that talks about regulation during healing. I really want you to LAUGH when you read the following!!!!!!!!!!
Drove from Washington, DC to upstate, New York. 7-hour drive. Spent three nights with a friend and then drove to long Island NY where I stayed with a pretty toxic friend for two weeks. I stayed that long mainly because I wanted to be near the ocean and as is often the case on this gypsy journey that parallels my healing journey, I really didn’t have another place to go.
Left Long Island and drove back to upstate, NY to visit another struggling friend. 5-hour drive in pretty intense traffic the first three hours. Why is it that everyone who is still part of my life seems to be a mess? Messes attract messes? Stayed in upstate, NY for two and a half weeks. During the visit, I began to notice that I was grinding my teeth more than usual and was having pretty bad pain in my teeth and gums.
For me, it is often difficult to differentiate sensations of discomfort and pain after such a long time of living with so many bizarre symptoms. It eventually became evident that this was different pain and it was centered in one tooth. I soldiered on and tried to avoid eating anything hard and only chewing on the side of my mouth as the tooth was dead center in the front of my lower jaw.
By the time I left Cape Cod, I could not even drink through a straw without extreme pain…
Drove from upstate, NY to Cape Cod to meet some of my family members for a little vacation. 5-hour drive. Rather enjoyed it except for the tooth which by this point was throbbing pretty much non-stop. I felt pretty well most days on the vacation.
I had things to do and people to do them with. I had a purpose and focus to my days, something that is rare during withdrawal for me. By the time I left Cape Cod, I could not even drink through a straw without extreme pain, but I was so happy to have been by the ocean and able to lie in a great big bed in a beautiful room feeling the cool breezes on my skin at night.
Drove from Cape Cod back to upstate, NY. 5-hours and an easy drive for me (easy in withdrawal terms which is very different than a drive used to feel when I was well). Spent two nights in upstate, NY to break up the drive back down south to deal with my tooth. The second morning I woke up to a crashed computer. Would not turn on. Total panic for me as my computer keeps me connected to the world. YIKES!!!!!!
Drove to DC, a long eight hours in heavy summer traffic. Made a dentist appointment for the 8th. Rested up a bit, swallowed more ibuprofen, dropped off the computer. Needed a new logic board (expensive repair). More stress because my finances have suffered during what is now just over eight years of not being able to work.
Drove to Easton, Maryland where I lived for five years of the benzo withdrawal journey and where my dentist is and my vet. Two and a half hours at the vet. Rosie had her annual visit. Off we drove to the dentist.
Let me not forget to mention that my dog goes everywhere with me.
Let me not forget to mention that my dog goes everywhere with me. I rescued her two years ago, just had to have another dog to keep me company and I had gotten well enough to take care of a dog, something I couldn’t have done during the long taper process or in the first year and a half of being benzo-free.
Rosie, unbeknownst to me at the time of the adoption, suffers from separation anxiety. One reason I got her was to help with the anxiety. I developed anxiety the last four years I was taking benzos as prescribed and then seriously incapacitating anxiety once I started my taper and then even more intense once I was benzo-free. I did not have it pre-benzos and wasn’t prescribed benzos for anxiety.
How bizarrely fitting for somebody with debilitating anxiety to be the mother of an anxious dog. We work it out. She gets in her little black bag when we grocery shop, go out to eat, go to the movies, go to yoga (when I am able).
How bizarrely fitting for somebody with debilitating anxiety to be the mother of an anxious dog.
I got to the dentist to have my mouth looked at and to have a cleaning. The dentist was on vacation so I could only see a hygienist. After a quick look at my mouth, she took a great many x-rays and upon looking at them said that she could not clean my teeth until the dentist had a look at the x-rays. The painful tooth was so loose that she was afraid to clean them. Yup, this was ramping up my anxiety.
I went and spent the night with a friend as I was beginning to feel too tired to get back in the car.
Phone call from the vet. Rosie had tested positive for one of three tick borne diseases. ANXIETY spiked. Drove back to Washington. Took my car in to be inspected. The car flunked inspection due to bad rear brakes. Are you kidding me? Just had the clutch replaced and was told everything was in good order.
Called my mechanic who works in Charlottesville, VA where I lived last year and made an appt. for August 12th. I then went to pick up my computer and somebody took out my side view mirror while I was parked. This is getting good. What next???????
Drove from Washington to Charlottesville. Another longish drive. Spent the night with my sister and then took the car in. Car brakes fixed, but not paying to replace the mirror. Figure I can fix it myself at least well enough to pass inspection. I used to be able to fix anything, super handy and dexterous. Not so much during benzo hell.
Had a peaceful day at my sisters and left the next morning after having my hair cut and colored. I have to note that going to the hair dressers was something I enjoyed pre benzo hell but it has become a pretty anxiety producing endeavor for a long time now and then there is the having to bring Rosie to the hair dresser factor. She freaks out at the sound of hairdryers. We made it through and got back in the car to head to Washington.
Back in Washington. Talked to the dentist who said I need a root canal and that he could refer me to somebody he knew in Easton. Oh no, not somebody new. More anxiety.
Emergency trip to the new dentist. Drove back to Easton, stopped at my old dentist to go over things. Talked to the vet. After a further blood test for Rosie, it seems she did not have the disease but had been bitten by a tick and was fine. A little good news in the midst of a lot of bad news.
Emergency trip to the new dentist.
Stopped at my old yoga studio just to breathe for a minute and then headed to the new dentist for a root canal, something I have never had, but that always sounded like a horrible procedure. It was indeed pretty horrible, but the thought that relief might be on the way after five weeks of pain made it tolerable.
Drove back to Washington after the procedure. Truly do not know how I was able to do it. There was a time not so long ago that a trip to the dentist was almost unbearable. More healing. Not unbearable at all anymore, in fact kind of like having a focus and people to talk to.
Repaired the car mirror well enough to pass inspection.
Headed back to Upstate, NY.
So here I am a few days later and feeling like hell.
When I wrote the timeline, above it occurred to me that a well person might be feeling a bit overwhelmed, a bit exhausted. For me it goes way beyond that.
I try to find humor in it all and hope you will have a chuckle over my tale…
So there it is. I am trying to find some humor in it all. Humor in the extreme overwhelm and endless suffering. It does seem almost like a comedy of errors sometimes. What is your take on doing too much when one is still healing? I would be interested in other people’s input on this subject.
I don’t want you to be pained by what I write. I try to find humor in it all and hope you will have a chuckle over my tale of my summer travels thus far. I am sure there is healing going on, it is just hard to feel it when you feel dark and gloomy and exhausted….exhausted but you can’t sit still. Crazy raging brain.
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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.