Twenty Years Enslaved, Twenty-one months to Freedom
Today marks my one year anniversary of finishing my taper off of Klonopin, so I will attempt to relate the story of how I got both ON and OFF this poison.
In 1984 while living in an area of the country that is vulnerable to severe snows off the Great Lakes, I was in a car accident with my husband and 2 children. There was no avoiding the crash; a driver in the opposite lane put her brakes on and swerved on the ice coming right into our path. After the impact I turned around to check the kids. Son was fine in his car seat. Daughter, 5 and not in a car seat, was slumped against the door, not breathing, and bleeding. My husband extricated her and did CPR on her. This was about 5:30 in the evening. She did not fully regain consciousness until 3 o'clock the next morning. She opened her eyes and looked at me. I said "Amy, count for me" to check her mental status. She counted to 10 and then said, "Mommy, call me Count!" referring to the Sesame Street character. She was going to be fine, except for a tiny scar on her eyelid. I was not.
I did not leave the house for the rest of that winter, which was about 6 weeks. And, even though we were in the midst of building a new house, I determined that we were not going to continue living in an area of the country with harsh winter road conditions. Eighteen months later we were in Houston, Texas where my husband began a one- year fellowship in Obstetrical Anesthesia. After that year, he took a job in Phoenix, Arizona.
While we were in the Southwest, I realized that I did not like black widow spiders and scorpions any more than I liked icy roads. The aftermath of our accident, building a new home, moving into it, moving out of it, moving to Texas for a year, then Arizona for what turned out to be only one year began to take a toll on me emotionally and physically. I began waking up at 1 AM every morning and staying awake until about 5 AM. I began also to have debilitating Irritable Bowel Syndrome, to the point that it was nearly impossible to leave the house.
After only one year in Arizona my husband was offered a job back in Houston that he felt he had to take. So, we moved yet again. One day shortly after we moved I began to experience frequent episodes of feeling as though something was "off". I felt short of breath, weak, very warm, and as though everything around me was not real. Enter the Psychiatrist, and with him .25mgs of Xanax to be taken when the "attacks" happened.
What lovely, wonderful relief the Xanax brought me. For about 4 hours. Then it all started again. Then .25mgs became .50mgs. Onwards we went up to 2mgs a day. And then a tri-cyclic antidepressant was added because I had a family history of anxiety/depression.
(Or was it, that I had a family history of women being given sedation for life's ups and downs?)
Looking back on this period with the understanding that I now have, I see that from the very first pill I was in withdrawal four hours later. What felt like another panic attack, was really Xanax withdrawal. Only I believed that it was "Generalized Anxiety Disorder" and that the reason I started feeling awful after 4 hours was because when the Xanax wore off my "illness" was manifesting itself.
How different the last 20 years of my life, and my husband and children's lives, would have been had I only understood how quickly a physical dependency and withdrawal set in.
I never felt well. I had no energy. I caught many viruses. I gained weight very easily. I was beyond irritable. I yelled and yelled and yelled at any and all who came across my path. Mostly my husband and children. How can I ever make up those years to them? My kids, very much like myself with my own mother, have no memory of me not being chronically FOUL because of benzodiazepine tolerance/withdrawal.
In early 2005 my mother, who had been on both benzodiazepines and tri- cyclic antidepressants for over forty years, was taken off her benzo by a new Psychiatrist who said she did not keep people over 60 on benzos. I was 52 at the time and began, for the first time since starting Xanax (which was changed to Klonopin along the way) to think about trying to stop taking it. So, in May of 2005 I started to withdraw from Klonopin.
I knew not to stop it suddenly. But, I did not appreciate how slowly it needed to be withdrawn.
I went overnight from 2mgs a day to 1.5 mgs. And about 2 weeks later to 1 mg. Then to .5mgs after another 2 weeks or so. Then I started to skip days. Three days on, one day off. It becomes a blur after that really. What I can recall is that I could not breathe, could not swallow, slept barely one hour a night, and felt both the worst anxiety and the worst depression I had ever experienced. And the most unbelievably loud ringing in my ears. Also, a nearly constant inner vibrating sensation that felt as if I was sitting on top of a washing machine on a fast spin cycle. I would have trouble walking because the floor would feel as if it were moving up and down. I never mentioned anything to my doctor because when I told her I was going to reduce my Klonopin dose she wanted to give me an SSRI antidepressant. I had actually taken one dose of Paxil years before, gotten the horrifying serotonin headache and thrown the rest away. No thank you.
This went on for a few months. My husband was suggesting that I see a
neurologist to have the symptoms looked into. I decided instead to see if I
could find any information online regarding the symptoms. As I tried to see my
way through the thick clouds in my head I did a search to see if perhaps anyone
had anything to say
about benzodiazepine withdrawal. I was stuck between .5mgs and .25mgs and did
not have a clue how to proceed.
We all have a few moments in our lives that if someone were making a film, would be recorded as a scene with the Hallelujah chorus playing, the sun breaking through ominous storm clouds, and the trees filling with buds after the harshest of winters. For me, one of those moments was when I joined the yahoo benzo group and began reading the years of archived posts. Every single thing I had been experiencing was down in black and white. Everything. I was not dying, I was not insane, and I was not malingering. And for the first time in a long time, I had hope.
I spent about two or three weeks literally reading every post from the beginning of the group. It took this amount of time for the facts to sink in for me. The medication that I had been told that I needed for the rest of my life had caused this. I would vacillate between disbelief, anger, relief, and the closest I could come to joy considering how miserably ill that I was.
As I read the Ashton manual, I knew I had to make a decision whether to switch to Valium to get off the last bit of Klonopin or figure out how to use the water titration method. After discussing it with Ruth, David, and Helen (all water titration pioneers here) I decided I was not going to ask my poor old brain to adapt to Valium at that point. Since Klonopin has a moderate half-life, this was a viable option for me.
Despite the fact that I am an RN, it took me many, MANY readings of the water titration explanation to wrap my head around it. It felt like I was trying to learn Mandarin Chinese.
Thanks to the support here, I was able to finally put it into practice. It took me one year to titrate off the last .25mgs. It was not easy. Looking back, I don't know how I did it really. My brain was so frazzled that I could not even make a sandwich. I would stand in the kitchen with the bread and mayonnaise in my hand and literally walk in circles not knowing what step to take next. How on earth then did I measure the water, grind the pill, rinse the mortar and pestle, measure the water again, know which amount to drink and which to throw away? I believe that God was right there holding onto the graduated cylinder with me. That's the only explanation I have.
My symptoms did not really get much worse when I was titrating because they were already pretty severe to begin with due to the earlier extreme cuts I had made. I remember my first window. My husband and I took a drive about 90 minutes from our home to have lunch at a resort on a lake. It was Christmas time and sitting there looking out on all the beauty was such a treat after being trapped in the house for so many months. It was the first time in 7 months that I had some relief. It lasted a few hours.
The next milestone was one day at the kitchen sink. I was cleaning the dishes and suddenly found I was singing to myself. This had not happened for ages. It seemed to signal to me that the horrible feeling of dread that I had been living with was lifting.
Over the past year the symptoms have slowly faded. Not in a dramatic way, but very gradually. Like turning a dial ever so slowly. As I work at using my brain, I find it challenging but rewarding. I started a very easy online class that does not require much reading. Since I have done that, I noticed that a lot of old memories have come back. Names, faces, and events that I could not find in my "archives" before have started returning. Six months ago, this was but a distant hope.
What have I learned from all this and what advice would I have for someone going through it?
1.) You can move away from snowy road conditions, but the condition of your heart remains the same. I was my own worst enemy, the ice wasn't. There are things in life that are beyond our control and failing to admit and accept that kept me sick for years and opened the benzo door.
2.) A trusted friend, pastor, or non-biological-psychiatry-oriented counselor is the treatment of choice for those times when our problems seem bigger than we can handle.
3.) The body was created to survive in this world and to heal. It can do a pretty good job of this if we get out of it's way.
4.) If I can do this, after being on Klonopin for twenty years, anyone can do it. Don't ever give up hope, and don't ever believe you are destined to a life on psychotropic medications.
From Hebrews 13, the New Testament
"Be content with what you have, for He has said, "I will never leave you nor forsake you." So we can confidently say `The Lord is my helper; I will not fear; what can man do to me?'"
I'll be praying for all of you. I am more thankful for this group than almost anything else that has happened in my life. We are so blessed, those of us that found this place. We know what was wrong with us, and we know how to fix it.
Love,
Barbara