19 Months out from an 8 month failed taper and then a cold turkey with pheno for 7 weeks. I am still healing, and have much to say about it all. Warning, this may ramble.
First, I am still shocked and angered that doctors can prescribe a drug that literally damages brains, causes addiction, and subsequently ruins lives. Why are our jails overrun with people who smoked or sold pot, (or worse!) yet MD’s who whip out a prescription pad and RX a benzo does not.
A colleague of mine is a semi-retired shrink. A few days ago he told me he is ashamed of his work and his profession. He confessed that in most cases, psych meds do very little to help patients. Also, most shrinks have never had to deal with the issues that push people to get help, so they know very little from the compassionate human side of helping. All in all, my friend summed up a profession that promises to help, but does very little and actually harms in many, many, cases. I was deeply touched to listen to him. He does not prescribe benzos, He is well aware of my benzo healing journey. I would love to see the world wake up to the fact that psychiatry is not the golden-haired boy most people think it is.
When I was put on a benzo, I was deep in emotional trauma from working with a therapist who was clearly untrained in sexual abuse recovery. I was having flashbacks and was often flooded with overwhelming emotions. I was in an emotionally abusive marriage, and I had a 5 year old, a 4 year old and 2 year old twins running around. My family had turned their back on me and I felt totally and utterly alone and helpless. The panic attacks that came were brutal. My shrink told me I had a “bad brain,” and needed a benzo to “fix” it. He never said that my abuse played a role, or my horrid marriage, or feeling abandoned by my family. So I believed him. I felt defective. I remember taking the Klonopin, .5 in the am, .5 in the afternoon and 1 mg at night. I was a zombie. I felt wooden. It was horrible. But I thought I had a bad brain and “needed” the pills. The doctor had told me so. Klonopin did stop the panic attacks that brought on a racing heart and shaky legs, but it did not stop the emotional pain of my subsequent divorce and continued separation from my family. It fueled uninhibited behavior at times. Looking back, my shrink put me on the equivalent of 40 mgs of Valium. What doctor in their right mind would start anyone out on such a high does? No wonder I felt as I did. I am lucky I never hurt anyone while driving with that much benzo on board. I stayed at that does for 9 years! No doctor warned me benzos were bad for you. No one told me that every time I swallowed a pill my brain was being damaged. One doctor told me Klonopin was bad, and he switched me to Ativan, saying it was less harmful. He didn’t take into account the dosage difference and with in three days I was in withdrawal to Klonopin. I had no idea what was wrong with me, other than intense, hell like terror I had not had before. I ended up in the ER, via ambulance, was given Klonopin and everything was back to normal. Looking back I am so saddened by this. I was told it was my “underlying anxiety” and felt even more defective. Not one medical personnel told me I was in withdrawal from Klonopin!
Nine years out and life was pretty calm. I decided to ditch the benzos. I tapered off the morning and afternoon dose. I remember feeling that horrible chemical anxiety withdrawal beings. But I somehow got down. I had no idea how to taper or if a doctor told me to taper. This was in 2000 or 2001 so I didnt know to google withdrawal. I got free of the morning and afternoon dose. Then I dropped my nightly 1 mg. I was ok for a few days. I rode with my family, (we had patched up our differences) from Colorado to Georgia. When I got to Georgia, I could hardly walk. I had to hold onto to everything. I didnt have true vertigo, yet I was so off balance I was afraid to walk. I could not sleep either. We went out of lunch one day and the world had changed. I had horrific derealization. Everything was terrifying. I called my doctor in Colorado. I cant remember if he told me it was withdrawal or not, all I remember was him telling me to take 1 mg right away. I did. And of course all the crazy things stopped. I stayed on the drug another 10 years, 1 mg every night. But I was in tolerance and my health getting worse.
Inter dose tolerance set in. I was having chemical anxiety every late afternoon. A glass of wine helped that. I didnt know booze hit the same receptors. I had no idea the two drugs were similar. I moved my family back to SF bay area, started grad school for my doctorate and slowly started falling apart. First it was my bladder. I had so many problems with it that the doctor had no idea what was causing it as it was not “normal” issues. Then it was my stomach. I had it scoped. Again, nothing the doctors could pin point. Then it was my hearing, then eyesight. Then I came down with what my internist said was Chronic Fatigue. I spent a summer in bed. When I got up I was weak and dizzy and had horrid eye pain and derealization. I could not walk up a flight of stairs I was so weak and breathless. I had a few strange panic attacks that were not like my original ones. Soon I was drinking two glasses of wine as that seemed to help. Life limped on. I had times when walking was an issue. My legs didnt know where they were in space or time. I couldnt hike for very long or my head felt fuzzy and strange, the world would get distant and blurry. Not one doctor told me I was in tolerance to Klonopin. Not one. They all were more than happy to take my money when I saw them, and of course encourage me to return for more tests, but not one recognized benzo tolerance even though it should have been clear from my symptoms and the length of time I was on the drug.
It took my life crumbling in on itself for me to figure out that the booze I was drinking to stave off withdrawal and the benzo was the root of my health problems. I quite drinking cold turkey. Two weeks later I began tapering. My doctor told me to cut a 1/4 of the pill out ever week and I would be off in a month, good as new. Ha! Its scary that doctors can put you on this crap and have no idea how to get you off. I cut .5 out in a month and the gates of hell opened, and have not shut all the way since. That was in October 2010. I have had three hospitalizations since, all due to benzo withdrawal. I was unable to work for over two years. I lost everything. I am on food stamps. I battled for disability but was denied. My family has been helping me. I was a thought leader in my field. I was on national TV and radio and had written four books. And I was no longer able to shower, cook, read, or do most of the day to day living tasks. Every day was a day of sheer terror. Not anxiety. Raw heart stopping terror. I was hospitalized three times during my cold turkey. Then the bone and muscle pain set it. Excruciating nerve pain. And its now 27 months since I started getting off and 19 months off. I am recovering, but still so very sick. Pre K I had panic attacks. On K I was sick and bed ridden at times. Off K has been a nightmare. It makes my old panic look like child’s play. I believe the veterans of withdrawal when they say we all heal. I am praying that is true. I am tired of the pain, the fatigue, the weakness, and the mental symptoms withdrawal brings. I am making progress as I am getting back into my coaching work, but I have a long ways to go yet.
This will be my last post until I have a success story to post. I am going to hide these posts soon as I dont know if these posts will harm my career. That is a sad thought, but I have lost so much to benzos, I dont want to lose any future work because I have tried to help others with my story. With the new climate of ferreting out the “mentally ill” I also worry I may be marginalized at the very least, or worse, put on a government list of some sorts and God knows what that means. I was never “crazy.” I was healing from being raped and or molested by a neighbor, a doctor, a teacher, a boss, 3 dates, a friend and a stranger. I was healing from being married to a wounded, emotionally abusive man. I was healing from being abandoned by an family who had no idea how to help me. I was hurt. I was scared. I was overwhelmed. All Klonopin did was mask it all and damage my brain. It never cured anything and harmed so very much of my body, brain and life. 19 years I was on that poison. 19 years! Now, 19 months free. I pray I live long enough to be able to celebrate 19 years free!
Thank you for reading this very personal account. I just needed to get it off my chest. My sx today are: bone pain, tingles, burning, head pressure, head aches, red eyes, sore eyes, itching, anxiety, depression, dizzy, looping thoughts, intrusive thoughts, anger, up and down emotions, weakness, fatigue, muscle pain, twitching, benzo belly, and bee stings feelings all over and on bottom of feet. Bones are so painful it is hard to walk in the morning. Burning tongue, and jaw pain, tooth pain still bothersome as are nightmares.
To Dr. Rick Robinson, the doctor who prescribed Klonopin for a “bad brain,” you need to have your license revoked. You need to be educated on benzos. If I could sue you for my lost income and the tallied medical bills of over six figures due TOTALLY to Klonopin use, I would. But I know its a battle to sue here in the States. So instead I work on forgiving you. Forgiving the men who hurt me. Forgiving my friends and family who abandoned me. And I work on forgiving myself for the role I have had in the bad things that have happened in my life. I just want to move on from here.
I will be in touch again when I have a success story to post! Hopefully that is sooner, rather than later.