I am an award-winning singer/songwriter with a number one record to my credit. I also owned several small businesses and founded a 501c3 non-profit for women’s health. I ate healthy, swam and cycled every day and had a very active lifestyle. This was before benzos came into my life. Since withdrawing from benzodiazepines five months ago, I still cannot play one of my own compositions all the way through without a mistake.
My benzodiazepine journey began in 1999. I was in the rat race like most Americans, working long hours and recovering from the death of my mother. In July I woke up in the middle of the night with my heart racing out of control. At the time I didn’t realize that it was horrific anxiety, which would soon become a household word in America. I had numerous ER visits followed by a cardiac workup and a huge assortment of other tests that “ruled out” any major health problems.
I was never told that these were classic menopause symptoms. I had been going non-stop in a high stress business and not addressing underlying life issues that most of us face these days. The end result is poor adrenal function, and a life that spirals out of control from too much stress.
After a month with no sleep, I ended up in a psychiatric hospital where the doctor placed me on lorazepam. It worked like a miracle, and after sleeping for three days in the hospital I was sent home with a refill on the prescription. I was never given any instructions about the drug, and I was never told that I shouldn’t use it long term. As I look back now, I know I was most likely physically dependent on the drug within a few days. The doctors just kept refilling it, and I went on with my life thinking that it was working and all was well.
Two months after starting the lorazepam, I contracted a severe vaginal infection (which I had never had in my life,) and was given an antibiotic called Cipro. I had a severe reaction to the Cipro and had to stop it after just a day. Prior to these two medications, I didn’t even take aspirin.
In October of that year, I took a trip to Costa Rica with some of my friends. When I returned, I became violently ill with a double parasite infection that took over a year to diagnose. Not one of my friends got sick, and we were all living in the same place and eating the same food. I was down to about 100 pounds and looked like a starvation victim. This was the beginning of what I call the journey of 1000 doctors. I went to every kind of practitioner you could imagine and spent hundreds of thousands of dollars. Not one of them ever suggested that my heath issues might stem from the lorazepam I was taking.
In November of 2001, I became very dehydrated from the infection. I blacked out and fell face-first onto the floor which resulted in a fractured orbit bone. I was not able to recover fully, became homeless and ended up on disability.
It seemed like everywhere I turned the medical system had just become big business. Mainstream medicine and disability were becoming an endless paper trail of pills and surgical procedures, while alternative medicine depleted every last cent I had. I was only getting $714.00 a month on disability, so I was living with friends and scraping together what money I could. I was only able to do odd jobs that didn’t require a great deal of stress, and I could only work very part-time.
Like many others, I was just getting a glimpse of how broken our medical system had become. Western medicine has some of the best trauma care in the world, but they fail miserably when it comes to treating chronic health and mental health disorders. After what happened to me, I had to ask myself: are all of these people really mentally ill, or just the product of a majorly stressed out society that is on the rat wheel from hell? I believe there are many more people suffering from the result of taking these medications than we are even currently aware of. Like me, they all placed their faith in a medical system that was too busy putting profit before people.
Two years later, I had an auto accident and ended up having to have major neck surgery after watching my father bleed to death in the ICU. I also sustained a torn rotator cuff after the accident. I was in physical therapy for about a year recovering from these injuries and did not understand why I wasn’t bouncing back when the doctors kept telling me my recovery time should have been much shorter. They kept writing more prescriptions for the lorazepam, and my dose was up from 1 mg to about 4 mg a day by this time.
Things finally began to level out for me after buying a small business in 2005 with some of the money my father left me, but that was short-lived after the market crashed in 2007. I ended up having to close my doors, and I slept on a friend’s floor for two years while I built up a business teaching voice and piano. The business provided me some flexibility while I struggled with very heavy bleeding from fibroids I had at menopause. Little did I know then that benzodiazepines could disrupt hormone function. Instead of getting me off the drug, the doctors just kept throwing more hormone replacement at me.
By 2010, it seemed I had leveled out some with having a more flexible part-time income, but I still struggled with horrible fatigue and bleeding. My testosterone dose was increased, and to my dismay I found out the tests they had been running were not accurate. As a result I was overdosed on the testosterone. I went to yet another hormone “specialist” and was taken off the testosterone cold turkey. The result was a Secondary Addison’s episode that I thought was going to kill me.
The following year I was put on hormone pellets. These are inserted under the skin instead of taking them orally. Because they go directly into the bloodstream, they are supposed to bypass the digestive system and be a much more effective form of hormone replacement. Although the bleeding I had been having stopped in 2009, I began spotting again after starting the pellets. At first I felt amazing, but it was a false sense of security due to my adrenal function being so poor. I seemed to hold up well for several months and then completely collapsed in 2012. I couldn’t even walk to the mailbox without my heart racing over 100 beats a minute. All that I could do was lie on the floor and do deep breathing to soothe myself.
Shortly after that, I began reading more and more information online and found a non-profit called The Point of Return. Alesandra Rain founded this organization after a horrific time with her health coming off multiple prescription medications. Her story was eye-opening, and through her non-profit organization I found Roy Katz at Custom Rx Compounding Pharmacy in Minnesota and learned about his medication taper program. Roy told me how bad the hormone pellets were for my adrenal glands, and before starting my lorazepam taper he helped me get off of the hormone pellets. At this point I still had no idea how badly the benzos were destroying my health, but I knew without a doubt that I had to get off of them.
I thought I had already been through enough, but wasn’t prepared for what was ahead of me. The doctor that inserted the pellets put me on an oral estrogen so that I could come off of the pellets, but there is no research on an oral to pellet equivalent ratio of hormone doses. Because the pellets go directly into your bloodstream and are far more potent than any oral dosage, there is no way to be certain that you’re getting the same dose of estrogen orally as you would from the pellet. This resulted in a withdrawal bleed so bad that I had to call the paramedics. I lost so much blood that I was in the hospital for three days. They had to call the crash unit because of my blood pressure dropping so low, and I ended up having a blood transfusion.
I continued bleeding for months, and was scheduled for a hysterectomy when I found an amazing herbalist who put me on an herbal formula. A week before the surgery was scheduled, the bleeding completely stopped. As I look back, I don’t think I would have survived another surgery at that point. Several months later, Roy helped me taper me off the testosterone pellet. My joints and bones hurt so bad that I could hardly stand up, and I was a total wreck. My hair was falling out, I couldn’t sleep and I could barely function to get to the store.
Roy tapered me over to diazepam because of its longer half life, making it easier to come off of the lorazepam. I couldn’t believe that I had climbed to 10 mg of lorazepam. It was amazing that I was still standing.
The taper program uses a liquid titration method that is compounded in almond or olive oil. The pharmacy uses 1 mL syringes to draw out the liquid, and the dose can be compounded to whatever amount you need which allows for very slow tapering. The result of doing tiny tapers is that the brain has time to adjust and begins to restore its own GABA neurotransmitters that may have been damaged from the drug. The medication scales are linked to a computer so they can be measured very accurately. Most people are able to work and have minimal withdrawal symptoms this way. The program itself is free, and medication prices are averaged out over the course of the taper to make them more affordable for most people.
Because my adrenals were so beat up from the hormones and long term use of the lorazepam, the end of my taper was brutal. I was down in bed for the better part of the last six months of the taper. I had two blackouts. One resulted in another head injury, and I sustained a back injury with the other. I had hallucinations, extreme weakness, visual problems, confusion, balance problems, akathisia, insomnia, extreme whistling in my ears, G.I. problems, memory loss, weight loss, weight gain, intense body aches and pain, joint popping and snapping, muscle tension and tightness, inability to handle stress, hypersensitivity, hair loss, rashes, and hyper salivation that resulted in rapid tooth decay. This is just a list of physical symptoms and doesn’t include what it did to my self confidence, career, friendships and my bank account.
Roy hung in there with me when no other medical processional would. His knowledge about hormones and medications far exceeds that of any healthcare practitioner I have come across. I believe that many good doctors have opted out of the insurance system so they can make money, and are therefore out of reach financially for the average person. The doctors who do take insurance are all drowning in government paperwork that prevents them from having the time to care for patients the way they might like to.
I found an inexpensive little guest house in a remote area of Phoenix where I could recover my health, and I began helping Roy expand this taper program. There is no way I could have worked doing anything where I could not micromanage my schedule. On many days I can’t handle driving, and I am still having issues with my central nervous system that do not allow me to participate in normal day-to-day activities like I could before benzos. Working with Roy has allowed me to generate some income where I can soon be free of the disability system. It is helping me regain some of the dignity I lost from these prescription medications.
After reading posts in the benzo forums, I realized how many people needed access to the information we provide in order to know how to come off of these medications with minimal withdrawal symptoms. I wanted to be able to help others with the knowledge I had gained about prescription pharmaceuticals and what to expect with the withdrawal process. I realized how much compassion I had gained for others struggling with the same thing I had gone through, and thought that my story might inspire others to come forward to create more awareness about this issue. Most doctors don’t believe these drugs can cause the problems they do, and the only way that is going to change is for the people who have been affected to come forward with their stories.
I can only hope that someday I will be able to go back to playing music. While I help Roy with creating affordable treatment, diet and stress management plans for others, I am continuing to work on several of my screenplays. I am involved with writers groups, and I am honing my skills in hopes that I will be able to sell them and get back into playing and writing more music. The one thing I do know for sure is that I have more strength than I ever imagined life would require of me. Managing to come through benzo withdrawal and recovery makes you feel as though just about anything is possible.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.