7/27/10—This rather lengthy, convoluted outline is still the shorthand version of my story; a story that’s still unfolding. Despite the length of this, I’ve left many things unexplained or undefined. In future blog entries and/or in response to comments and questions received via e-mail, I’ll clarify things. If this blog finds an audience and others benefit, that’s great. If not, then writing it will be therapeutic for me and that’s good too.
1994–I developed a handful of seemingly unrelated symptoms that, after much testing, couldn’t be attributed to any cause. In the years since, I’ve come to realize that what I had was a repetitive motion injury caused by a career which transitioned completely onto the computer before people were much concerned with ergonomics. As is typical, particularly with women, when no cause is apparent, a condition is labelled psychosomatic.
1995–I was put on 1 mg Klonopin (a benzodiazepine) daily and 90% of my symptoms went away thus justifying the opinion that it was “all in my head.” The real reason the Klonopin worked was because my primary symptom was muscle spasms in my neck and back. Klonopin is a world class muscle relaxer. When these muscles stopped crunching down on nerves passing through my neck, my other symptoms went away as well.
1997–I became tolerant to my then daily dosage. Of course this wasn’t recognized. Instead it was thought that “my condition worsened.” My dose was increased to 3 mg daily which resolved 70% of my symptoms.
1997-2004–During this period of time, I continued to work in my profession never addressing my still undiagnosed repetitive motion injury other than some simple concessions to ergonomics and some stretching exercises. As my condition “continued to worsen,” other drugs were added to the mix. I can’t even recall how many were tried and discarded. The ones that stuck were Neurontin (600 mg at bedtime), Paxil (40 mg daily) and Topamax (I don’t recall the dosage). I could go on a mini-rant here about Topamax, but I’ll save that for some other time.
2004–My husband and I picked up stakes and moved halfway across the country. I didn’t do much to prepare for this medically. I didn’t gather my records. I didn’t have my old doctors help me to find new ones in my new city. In retrospect, it’s not surprising that my new doctors prejudged me as a hypochondriac and a drug-seeker. I was oblivious to this and thought everything was fine.
2006–In January I went to a routine follow-up visit with my primary care physician. I requested my standard Klonopin refill and he went off on me. “I told you last time that I wasn’t comfortable prescribing this medication and that you needed to start seeing a pain management specialist.” I was dumbfounded because he’d never said anything like that to me. When I regained my composure, I dared to suggest that though he’d meant to say that to me, he never actually had. He pointed to a note in my chart indicating that he had. Case closed, end of discussion.
I asked for a referral to a pain management specialist and enough Klonopin to tide me over until that visit. I was given the first and, grudgingly, the second. Unbeknownst to me, I’d been referred to a specialist who was adamantly opposed to the use of benzodiazepines in the management of chronic pain. I now find this stance to be quite admirable, but it was very bad news for me at the time. Also unbeknownst to me, my primary care physician had given the specialist a heads-up that he considered me to be a manipulative drug-seeker.
About a month later I had my first appointment with the pain management specialist. He was quick to inform me of his stance on benzodiazepines. He wanted me to transition from Klonopin over to Lyrica, a drug he considered to be more appropriate for pain management. He gave me some Lyrica to begin taking and told me to start tapering Klonopin. He gave me no timetable for this, no plan of any kind, so I mistakenly thought the method and speed of the taper were up to me. Since I was leaving for a two week vacation with family the very next day, I decided I would begin my taper on my first day back home. Upon my return I called in for a refill and was asked for an update on my taper. When I said that I had just begun due to the vacation, he became very angry and told me I would have to complete my taper with the handful of pills I had remaining. I thought that since a doctor was telling me to do this, though it might be unpleasant, it wouldn’t be dangerous. I “tapered” (cold turkeyed) from 3 mg to zero in a week and a half.
In the week that followed I became sicker than I’d ever been in my life. My husband’s desperate calls to the doctor were answered with extreme annoyance. I was instructed to “ride it out and/or go to the emergency room if necessary.” A week later I begged my husband to take me to the ER. I told the ER doc that I felt like I was “holding a seizure at bay by sheer force of will.” I was assured that was impossible and sent home with a small supply of some unknown tranquilizer (probably another benzo). Whatever it was only made things worse and I refused to take any more.
The following week was straight from hell. There simply aren’t adjectives to describe what I endured. Extreme pain, psychosis and auditory and visual hallucinations were just some of the symptoms. Then my entire body went numb. I was unable to feel anything. This should have frightened the daylights out of me, but I was no longer in my right mind. The next day, while my stepdaughter was “babysitting” me, I had a grand mal seizure. She called 911, I was taken to the hospital and reinstated onto benzos. My husband was instructed to take me back to the pain management specialist the next morning.
Upon arrival at the pain doc’s office, it was immediately apparent that he feared a lawsuit. My husband and I were quickly ushered out of the waiting room (where other patients were staring aghast at my haggard appearance) and into a large office. The doctor had set up his laptop computer to record the entire office visit and had witnesses on hand. I was prescribed one bottle of Klonopin with no refills and told, “If this isn’t enough for you to taper off, then you need to go to [a name I didn’t recognize].” I still had no doctor-supplied tapering schedule; no instructions of any kind. The name given me was the local psychiatric facility. They have a detox unit there.
Without stabilizing following my disastrous cold turkey “taper,” I commenced a much too fast dry cutting taper. Very quickly I was in trouble again. This time I turned to the internet for answers. I found a Yahoo support group. The mods were alarmed by my story and knew I was headed for disaster again. Their urgent replies to my desperate queries scared the daylights out of me. I also encountered the phrase “benzodiazepine withdrawal syndrome” for the first time. I refused to read the definition. If I didn’t know what it was, then I couldn’t have it. I fled the group and its “negative” feedback. Though they had convinced me of one thing: it was essential that I go slower. A doctor friend of the family supplied the necessary Klonopin.
Over the next four months I dry cut my way from 3 mg to .5 mg. My symptoms were off the charts. I cried constantly and prayed that I’d die in my sleep. Although I’m incapable of being actively suicidal, I was so despondent that I no longer wanted to live. I began calling suicide hotlines. I couldn’t do this any longer. I needed a way out. Despite their contention that .5 mg of Klonopin was too low a dose to require detox, I dropped the S word (suicide) and successfully cried my way into detox. Ten days later I was released, Klonopin free, no longer in danger of seizure, but physically and mentally destroyed.
In my first month off I saw much progress with my symptoms. A few of them departed completely and many of them lessened, but the worst ones hung on tenaciously. Once again I turned to the internet for answers, reconnecting with the Yahoo support group. This time I found comfort there. Other people had similar or worse stories. Other people had the same symptoms. This was validation for me; something I hadn’t had previously. I educated myself via the group. I met friends via the group. I lived on the group, spending hours there every day.
2006-2009–I waited for the six month mark when I’d been told I might expect some relief. Then I waited for the year mark. I was becoming very despondent again. Other than that first month of initial healing, I hadn’t seen any progress. I came to believe I was permanently damaged. At 14 months off I decided to reinstate. My sad, bad plan was a starting dose high enough to make symptoms manageable with increases in dosage for the rest of my life to stay ahead of tolerance. My hope was that I’d die of other causes before my dose got so high that no doctor would increase it any further. I resolved to never taper Klonopin again. The Yahoo support group members tried tried to talk me out of reinstating, but I would have none of it.
Reinstatement brought me immediate relief. Overnight I became functional enough to do most of the work involved in moving from one residence to another. I drove, carried heavy boxes up stairs, unpacked and decorated. I went back to work. I went on family vacations. I began to live again; to enjoy life again. This to me was proof of the rightness of my decision.
Meanwhile, a friend from the group (whose benzo ordeal and timeline were remarkably similar to my own) began to recover. She too had been certain of her permanent damage, but at 18 months off the curtain began to lift. At two years off, she was pretty close to fully recovered, experiencing setbacks only periodically. I began to suspect what a horrible mistake I’d made, but pushed the thought to the back of my mind and refused to examine it too closely.
My reinstatement dose was .5 mg. I was amazed that this was enough to make a difference as my therapeutic dose had once been 3 mg. When increases to .75 mg and 1 mg became necessary, I wasn’t surprised nor particularly upset. However, when I quickly became tolerant to 1 mg with my new pain doc recommending an increase to 1.5 mg, I began to panic. At the rate I was going, I would hit a maximum dose long before the end of my lifespan. I desperately began to seek an answer that didn’t involve tapering Klonopin again. I tried low-dose naltrexone therapy (long story). I tried hypnotherapy. The hypnotherapy provided the answer I needed. I was able to accept what I already knew: There is no way around, only through. If I wanted my health back, I was going to have to taper again and ride out recovery no matter how long it took.
2009-Present–I sought the help of the support group’s resident water titration expert. (Water titration is a method of making slow, precise cuts in order to taper off of certain medications.) I got off to a rocky start. My body reacted badly to liquefying my entire daily dosage. I became very ill, losing my job when I became too sick to report to work. While on a day trip with a friend, I had my first ever anxiety attack. The next day I called the hynotherapist and told her I was in trouble. I knew that she wouldn’t know of a benzowise doctor, but I was hoping she could recommend a compassionate one. She did.
I was forced to updose to 1.5 mg daily and discontinue my second taper for a month while I stabilized. I was provided with a modified water titration; one where most of my dose remained dry with just .25 mg being water titrated at a time. I was able to immediately drop .25 mg before commencing the modified titration. I’ve spent the past 10 months doing the modifed taper. Two days ago my dose was .125 mg. If I’m not forced to slow down due to symptoms (pretty rough right about now), my last dose will be on August 23.
Now you’re caught up to the present. The rest of my story will unfold right here. I’m taking my life back.