Last night, Jan. 22,2006, I ended a journey that has changed my life. I’d like to share parts of that journey and some of the things I've learned along the way.
Like many of you, for years insomnia was my constant companion. It is possible to function on too little sleep, particularly when you have a demanding career and a growing family to support, but it's not a lot of fun! The quest for sleep and the resulting diagnosis of fibromyalgia led me to tricyclic antidepressants, which were commonly prescribed for this condition, and they did help for several years.
Five years ago we moved and my new doctor changed my treatment from the a/d to Ativan - a benzo. I decided to strike out on my own, purchasing an existing small business. I was excited to finally be directing my own future and I soon learned what it means to own your own business: long hours and exhaustion! And my old companion, insomnia, was becoming a major issue. I discussed the problem with my doctor and she recommended 2 mgs of clonazepam (Klonopin) to replace the Ativan. It really did the trick - or so I thought!
Business was booming, the number of employees had grown from 9 to18, and my health problems were just beginning. It started with a urinary tract infection that seemingly returned every 4 to 6 weeks, followed by the discovery of a lump in my breast. Chronic sinus infections and headaches became a way of life. A battery of tests indicated no major problems, but I wasn't feeling very well. Occasionally I had difficulty in choosing the right word when I was speaking, and several times I went totally blank. My blood pressure was extremely low. Tests after tests showed no medical reason for all these problems.
It felt as if my pilot light had gone out. I had lost my enthusiasm for the business, and it became clear to me that I had been declining steadily and subtly. With that realization, I decided to sell the business and get the answers that had been eluding the doctors for many months. For once in my life I chose to put my health first.
On March 1, 2005, a new doctor listened to my concerns and agreed that I needed to be off Klonopin. He said I should discontinue it over the course of three days, and in the meantime introduce Lexapro and Ambien, which I did, with his assurance they would be used short term. The next 30 plus days were interesting, to say the least.
By the 5th day I had tremors in my gut, my head and arms were jerking and I had general body shakes. The next day brought colon and bladder spasms. That wonder drug Ambien gave me a whopping 4 hours of sleep taking a double dose. Within three more days the symptoms had increased to the point where nothing could ease the full body spasms and I was up all night trying to find a way to release the muscle tension.
The doctor's response - Temazepam - another benzo! But not too much medication, because my symptoms strongly suggested I had multiple sclerosis. The doctor wanted a brain scan, but he didn't want my symptoms to be totally masked before I could see a neurologist. The nightmare continued and the symptoms kept coming until in my quest to stop taking one little pill, I found I was ordered to take more than 20 pills a day. Even mega doses of muscle relaxants, 4 Advil every 4 hours, the benzo and something to protect my stomach from all the pills, couldn’t control the fury with which my body was withdrawing from the Klonopin.
The insurance company, as inept as ever, dragged its feet so the wait for the MRI continued. Now I was a detached observer as the bathroom floor became rolling ocean waves,.. WOW! Is this what it's like to be on drugs?? What it's like to be OFF drugs is more like it, but I didn't know that at the time. In between pleas to the doctor and the insurance company my husband tried to work from home because I didn't remember how to take a shower. I couldn't read because nothing stayed with me for more than a few minutes. I couldn't sit because my body was out of control. I couldn't cry because the tears just weren't there. I couldn't sleep because the muscles in my head, neck and shoulders were so tight I couldn't close my eyes. I tried everything I could think of to fool my body into wanting to sleep - even forcing myself to yawn - something that wasn't happening naturally. I was wearing sunglasses in the house night and day, praying for the constant pain in my head to go away, and wondering why the 20 pills couldn't touch this pain?? I know this story is all too familiar to many of you!
In the midst of all this craziness, for about 15 seconds, a "window" opened and I felt like my old self. Up to this point I didn't know how much I had really changed, how numb I had been, how oblivious to the changes the benzo had caused. I had peace for those 15 seconds, and that glimpse of how life is supposed to be was enough to push me through from the cold turkey until I took my final dose last night, 11months later.
The final straw came on day 20-something. My diaphragm seized and I couldn't breath. I ran for some near-boiling water and swallowed it to release the muscles. Then I went to the emergency room.
I was admitted with "life threatening" symptoms. My blood pressure was in stroke range, my white and red blood counts were abnormal, my vitamin B12 was depleted, and my glucose level was extremely high. I explained the course of treatment I had received and the ER doc assured me that I could now get some sleep because he was ordering an Ativan injection large enough "to put an elephant out." I was awake all night... the nurses were amazed!
For the next three days I had every test they could think of - multiple MRI's, CAT scan, seemingly endless blood tests, a test to determine if I was prone to seizures, heart tests, eye tests, and a spinal tap. Yes, a spinal tap because my doctor learned I had lesions on my brain from that long awaited MRI, and now he was poised to give me the medication I really needed - the $1500 a month regimen of MS drugs. I argued with him, insisting I didn't have MS, but alas – the symptoms of benzo withdrawal mirror the symptoms of MS. When I asked him if I could be in withdrawal he said "no" - that he "might consider that diagnosis" but the lesions indicated I had MS.
Someone up there liked me that day, because a benzo-wise neurologist was called in and after running me through my paces he felt confident in suggesting I was in withdrawal and that I didn't have MS. However, he did have to run MORE tests to prove it. I was sent home with my new benzo friend, 4 mgs of Ativan, the muscle relaxants, the Advil, the Tylenol and on and on...
After a week of reduced but constant symptoms, my brain still wasn't functioning. I was now a couch potato because there was nothing else I was capable of doing. So once again I called the doctor and asked why I wasn't feeling better. He asked if I had felt better when I had been taking Klonopin. Of course I did! So he started me back on 2mgs of Klonopin at bedtime. Within three days all other drugs were in the garbage and I was walking the dog. Within a week I was feeling pretty much "benzo normal." That's when I found the Ashton Manual and this group.
After the wrestling match I had with Klonopin - with no way of winning the battle - I knew in my heart that I would not be given enough valium to replace the extreme hold this drug had on my muscles and central nervous system. This is an individual choice I made based on my own circumstances and may not hold true for everyone. Then I was faced with yet another dilemma - how to come straight off Klonopin safely. At that time I met a former member of the group, Alison, who had learned the water titration method from Helen who had used the method to come straight off Klonopin. Alison's husband had taken the basic titration premise and built upon it to try to keep the percentage of the total daily drop under 1% to protect people like me, who had been through a cold turkey experience, from receiving further jolts to the CNS. After doing my homework and my research, I decided that water titration was the path I needed to take.
I dropped from 2 mgs of Klonopin to 1.5 mgs after my body settled down. Then I sat on that dose for 3 months to become totally stable. On July 11, 2005, I requested a complete blood count and then I began titrating. Shortly thereafter, another group member, David, came knocking on the door hoping to taper from Klonopin. I discussed the titration method with him and asked his help in making it easier for people to manipulate the data. David graciously created a spreadsheet that does all the work for us. Thank you Alison, Helen and David!!!
Next I found a Doctor of Osteopathy who, just by chance, had an emphasis on neurology. He sat with me for two hours, concluding that my benzo experience had been barbaric. He understood my desire to titrate, although he would have preferred that I go a bit faster, but he said he would support me, and he has. He also wanted to keep close watch on my reaction to the drop in Klonopin. After 7 weeks he repeated the thyroid blood tests. I had gone from underactive (hypothyroid) to borderline overactive (hyperthyroid) in only 7 weeks. At 14 weeks my blood pressure was fluctuating, the thyroid was holding, but the glucose levels were rising again. At 21 weeks everything was normal. Yes, benzos do affect all areas of the body. But at least I felt good!
Since I was feeling stable and not symptomatic at all, I decided to push the envelope, so to speak, a few times while tapering. I started out at a moderate pace, then tried dropping twice as much drug daily as I had planned. That worked for over a week, then my body gave me a heads up - so I slowed down a bit. Later in the taper I pushed my rate of taper up considerably, and again, I was able to tolerate it for a while, then had to slow down.
Before I knew anything about benzos I had lived my life normally with no thought to the medication. When I started titrating I vowed to continue living as normally as possible. I refused to live my life around a pill! We normally had a small glass of red wine with dinner a few times a week. When I started getting into lower doses I found I'd have a headache the next day, so I put the wine on hold. That's basically the only change in my lifestyle the titration forced me to make. I have eaten anything I wanted, cut back a bit on coffee from time to time when I didn't feel I wanted it, and have just listened to my body - possibly for the first time in my life!
When the fibromyalgia symptoms started to return, as I expected they would, I focused on learning good sleep habits and increasing exercise to help me fall asleep. I increased my intake of protein considerably, incorporating 5 small servings each day to keep my energy up. I have had very little in the way of symptoms. Toward the end, for perhaps the last two weeks, I'd have occasional slight sweating and slight stomach tremors. Through the course of my six-month titration I've had a sinus infection and a bacterial infection and taken Amoxicillin without major problems. I've made it through three hurricanes and serious family illnesses without missing a beat. So in just a little over six months I titrated off 1.5 mg Klonopin with little to no discomfort.
A couple things about this journey stand out in my mind. One is that you can ask all the right questions and still find yourself in trouble with benzos. When I asked, I was told these drugs are not addicting. And when you do find yourself in trouble, most doctors don't know enough about benzos to really help you. We all basically become responsible for our own medical treatment and our own success.
In talking with so many of you and reading the files, it's evident that we all need to prepare to be drug-free. Whatever your root problem was is usually waiting for you at the end of your taper. Benzos don't heal you, they mask symptoms. In the future I will always ask about alternative therapies or methods to address illness rather than taking drugs.
Another big issue is dealing with fear. No matter how you decide to remove the drug from your body, there is the fear of the unknown. And in far too many cases this fear becomes somewhat paralyzing. I'm seeing people sitting at home waiting for something bad to happen. In the majority of cases, nothing does. I see it particularly in those who have experienced cold turkey withdrawal. I think we all need to remember that tapering is totally the opposite of cold turkey. It's important to take your life back and experience it! Don't forget the little things that make us happy - laughing, talking to friends, music, dancing - whatever you are capable of doing!
I'd also like to say to those who are currently on their journey to recovery that you do have options. I wouldn't like to think anyone feels there's only one way to beat benzos because there are many. Patience and education are the keys to choosing the best way for you to deal with your benzo situation.
When we write these success stories, we are preaching to the choir in some ways. Perhaps the greatest gift we can give people is to talk openly about our experiences and warn others about the benzodiazepine class of drugs and the impact they have. If each of us could stop one person from ever taking that first pill, what a great accomplishment that would be!!
Healing and peace to all,
Ruth
January 22, 2006