I’m a scientist as well as a guinea pig, so I usually focus on the technical details of psychotropic drug dependency and withdrawal. But I recognize that the human issues are just as important.
I’ll call my third psychiatrist Dr. Smith. On my first visit, he said, “I will find something that makes you feel better.” I was astounded to hear such a commitment. Later he assured me, “Don’t worry, it’s very safe; it’s a low dose.” “There are no side effects! We don’t have to check any lab tests.” And most ominous: “I promise I won’t get you addicted on 10 mg of Valium per day”.
All I did was get divorced. I was not a homicidal maniac wreaking havoc on the public. And I resisted the urging of my family and friends to go get a prescription for antidepressants. I said no, it doesn’t help to take drugs when you’re normal, and it’s normal to feel depressed about losing someone you love. But they persisted. They told me I had to do everything I could to help myself before anyone else would help me.
The loneliness was agonizing. So I relented and saw a doctor. This turned into a saga of four doctors and ten drugs. Most of the drugs had side effects so awful that I refused to take them for more than a few days: Prozac, Paxil, Wellbutrin, and Effexor. I persisted for a few months with Serzone and a few weeks with Zoloft, chasing the promise that I would feel better if I put up with the flu-like symptoms long enough.
I have a Ph.D. in Physics and a master’s degree in Macromolecular Science, so I avidly read the theories of neurotransmitter deficiency. Dr. Smith responded with enthusiasm to my interest in pharmacological technology. I felt that he genuinely cared about me. And the breakthrough in my treatment came in a 5:30 pm appointment when he re-diagnosed me as Bipolar Type 2. I was receptive to the diagnosis because he was working late, and he related the diagnosis to my creative abilities.
He then prescribed lithium, and I felt remarkably better within 2 days. I think now that it just anesthetized me from the effects of the other drugs. I stayed on it a few months and felt “comfortably numb”, to quote from the song, until my thyroid function went down.
Then the big experiment began. Dr. Smith gave me a starter kit for Lamictal, with little pills to take for four weeks. I took it home and just looked at it. Another four weeks of nausea, fatigue, and overall misery? No, I couldn’t do it. I went back the next week and explained that I couldn’t stand another round of starting up a new drug. He said oh no, Lamictal is different. “It doesn’t make you sick.” He insisted the small pills were just a precaution against Stevens-Johnson syndrome, a life-threatening skin condition that starts with a mild rash. If any rash develops on the small pills, Lamictal must be discontinued. Otherwise, he assured me, Lamictal is perfectly benign.
The FDA files tell a different story. Long after that fateful appointment with Dr. Smith, I requested the reports of adverse events following Lamictal treatment, under the Freedom of Information Act. The FDA sent me a computer CD with 15,426 complaints. The cost was $61. Anyone can get the reports on any drug, following the information on the FDA web site at http://www.fda.gov/opacom/backgrounders/foiahand.html.
Over the seven years I took Lamictal, the most obvious side effect was muscle tension and pain. But I didn’t realize it came from the drug. I have a neck injury from gymnastics in college, and I thought I was just getting worse with age. Dr. Smith always encouraged me to get plenty of exercise. Shortly after getting on Lamictal, I complained that my muscles “seized up” whenever I did enough exercise to get even mildly sore. My massage therapists complained too. They said my muscles felt like concrete. Dr. Smith prescribed Valium as a muscle relaxant, with great assurances that 10 mg per day was too low to cause any harm.
I think most people like to do what they know how to do. Dr. Smith knows how to write prescriptions, and he had the perfect set-up with me. He prescribed Valium to treat the side effects of Lamictal. And the Valium caused a visceral feeling of depression, which convinced me that I never fully recovered from my divorce. So in practical terms, he wrote prescriptions for Lamictal to treat the side effects of Valium.
I enjoyed those 15-minute visits with Dr. Smith once every three months. He was intelligent and upbeat. I could answer his checklist in 30 seconds: appetite, sleep, exercise, social activities, writing. Yes, they were all fine. Then I had 14 and a half minutes to talk to a doctor about anything else that came to mind: foot care, bird flu, or the philosophical theory of consciousness. He gave me more attention than any other doctor up to that time. So I trusted him.
I assumed Valium wore off in about four hours, like typical over-the-counter drugs. For about 4 years, I usually took one (5 mg) pill at night, hoping that my muscles would get a nice rest while I slept. I thought I was free of Valium during the day. Much later, I found out Valium and its active metabolite have a half-life of about a week in the blood stream. So all that time, I was constantly and unknowingly drugged on a controlled substance.
My fifth year of Valium was the revelation. I started an ambitious self-improvement program of exercise and psychotherapy. To deal with the sore muscles, I increased my Valium consumption to the full prescription dose of 10 mg. During this year, I always took the pills at bedtime. They seemed to help my muscle tension at first, but I never escaped the neck pain. And I sank into depression. I diligently followed my therapist’s advice to develop new interests, activities, and friends. And I felt worse and worse. I complained to Dr. Smith, and he told me I needed more drugs. Familiar story, right? For a while I took lithium in addition to the Lamictal and Valium.
Then I decided that the neck pain was wearing me down enough to impede my progress in psychotherapy. So I looked in the phone book and chose a pain management clinic near my home. On the first visit, my new doctor showed me the bone fragments on my neck x-rays, which were taken two years earlier. The radiologist called them “unremarkable”, and my primary care physician failed to diagnose anything wrong. That’s another long story in itself.
The pain management doctor diagnosed me with nerve irritation, and proposed a series of procedures. He explained that he doesn’t recommend Valium for this type of pain, because even though it does relax the muscles, it also increases nerve sensitivity to pain.
I was horrified. I discontinued Valium immediately. Three days later, I had a seizure in the pain management clinic during preparations for a cortisone injection.
My psychotherapist pointed out that I was exhibiting Valium withdrawal symptoms at my next visit. Under protest, I went back to a small dose of Valium and tapered off for five months. Then I wanted to know what else Dr. Smith’s treatment was doing to me. I insisted on a prescription for small Lamictal pills, so I could taper off properly.
Dr. Smith gave me the 25-mg Lamictal pills under protest. I spent the next five months very carefully reducing the dosage by 25 mg at a time. When I got down to 50 mg, I thought I was almost home free. So I cut the 25-mg pills in half and took half a pill every six hours, then stretched out the time between pills. I went down from 50 mg to zero Lamictal in one week.
Valium withdrawal is hell, and Lamictal withdrawal is super hell. For another four months after I got off Lamictal, the symptoms decreased very gradually. I researched withdrawal symptoms extensively, and found that most authors recommend a very long tail to the taper. I got fed up with the daily migraines, so I went to my pain management doctor and asked for a prescription for 5-mg Lamictal pills to treat migraines. He discussed options, and then agreed. I took half a pill per day for a month, then a quarter pill per day for another month. The strategy worked. The migraines decreased to a manageable point.
I also developed the Lamictal rash, which is clearing up now. GlaxoSmithKline, the manufacturer of Lamictal, warns that the drug should never be re-started in anyone who has ever had the rash, because of the possibility of “life-threatening or permanently disabling or disfiguring” skin disorders.
So far I’ve survived 17 months of drug withdrawal. And the symptoms are still hell. Maybe I should have tapered slower; I don’t know. But I certainly can’t go back and try it again.
GlaxoSmithKline recently posted the results of a study showing that Lamictal is no better than placebo for Bipolar Disorder Type 2, which was my diagnosis. So all this hell has been for absolutely nothing.
I stick with my original claim that I was normal when I felt depressed about my divorce. And I was socially healthy enough to ask for help from people I trusted: family, friends, and the medical profession. For this, I was poisoned.
Drug companies usually get the all the blame for psychotropic drug dependency, as if doctors are innocent lambs who have no other source of information. I think it’s time to re-evaluate who’s responsible for medical education. Roche Pharmaceuticals, for example, tells us what Valium can do as a muscle relaxant, but it does not tell us about the options for physical therapy, chiropractic, acupuncture, massage, stretching, yoga, ice packs, hot packs, capsaicin, anti-inflammatories, cortisone injections, or thermocoagulation of the cervical nerves. I found all these for myself. I don’t think it was Roche’s job to tell me about them. I do think it was Dr. Smith’s job.
With direct-to-consumer marketing, a patient can easily get as much drug information as a doctor. The prescribing information is available on the Internet. With enough dedication, a patient can also find information on surgical options, psychotherapy, physical therapy, and nutrition. So what do our doctors really offer?
We hope they offer good judgment. Before my experience with Lamictal and Valium, I assumed I didn’t have to check everything my doctors told me. I know better now.
Dr. Smith is not the only one at fault here. Over the years, I had dozens of health care professionals treat me for neck pain. Almost all of them told me that what I needed was what they knew how to do. The one exception was my first massage therapist. She said, “You need more than a massage. I want to refer you to a chiropractor.” The rest said, “You just haven’t stayed with my treatment long enough.”
Dr. David Healy suggested, purely as a thought experiment, that antidepressants would be safer if they were available over-the-counter. His main concern was antidepressant-induced suicide. He reports that some patients feel worse on antidepressants from the first dose, but their doctors push them to continue, and these are the ones at most risk of suicide. Consumers ordinarily stop taking anything that makes us feel worse. It takes persuasion by a trusted advisor to make us continue swallowing poison.
The human side of my story is trust. I learned that we can’t trust our doctors with our health. We have to do our own research and make our own decisions. Each individual doctor is just one source of information, and some are more useful than others. I am now pondering what a license to practice medicine really means.
This article was first published in the ICSPP Newsletter, 2009 – Number 1, pp. 5 – 7. See http://icspp.org for more information.
