I AM NOT BIPOLAR
Harmful Effects of Research Studies
In 1992 I had my first psychotic episode. I was hospitalized for 10 days and released with the diagnosis of Psychotic Episode. At that time in my life I was using MJ and alcohol but as I was self employed cleaning houses, I was functioning well Monday through Friday. Come the weekend I was drinking heavily. I was in an extreme amount of bodily pain from the work I was doing and, though I didn’t know it at the time, reacting to the emotional turmoil I was experiencing. I had been depressed since the age of 10 and had many issues that had not been resolved. For example, I had been born with a cleft-palate and hare-lip which required multiple and traumatic surgeries which occurred about every two years of my life up to the age of 23 years old. I had also been sexually abused multiple times from the age of 5 years old. There had been no counseling or support for these issues at all.
My first visit to a psychiatrist left me with the diagnosis of possible schizophrenia due to my family history of mental illness and drug abuse. I was prescribed antidepressants and antipsychotics which I took as prescribed. I flatly denied schizophrenia as even a possibility and I immediately went in search of another psychiatrist and diagnosis. I also took it upon myself to reduce my alcohol consumption and changed the self-destructive patterns in my life that allowed for drunken binges and marijuana use. I did not eliminate them but I did drastically reduce the amounts.
Three months after my first hospitalization I enrolled in college at the age of 46, in Human Services. This gave me an opportunity to begin to learn more about my mental illness as well as allow me the opportunity to find employment in a field where I could help others, as had always been my desire.
I began counseling at the local Comprehensive Care Center to address the issues of my abuse and continued to search for a reputable psychiatrist. I used my Family Physician for medicine refills in the mean time. I began attending every workshop and seminar I could find to gather information on mental illness. I had come to the conclusion that I most resembled someone with Bipolar Disorder and I joined a Bipolar Support group. At one of their meetings there was a presentation by a local doctor who was the head of a local university hospital’s Bipolar Stanley Research study. They were enlisting candidates for their study on a new medication for Bipolar called Depakote. In her talk she mentioned the harmful benefits of using antidepressants if you are diagnosed with Bipolar. As I was currently being prescribed the medication I was immediately alarmed. I also was unable to afford a psychiatrist and medications so I immediately enrolled in the study and was accepted.
They interviewed me extensively and surmised that I did indeed have Bipolar Disorder. I was relieved and grateful to be in the care of the “experts.” I was shown how to use a mood disorder chart and monitor my symptoms daily. I was told that this was a “double-blind” study and they would not know for a year if I was on the new drug, Lithium or a placebo. I made weekly visits to their office and was closely monitored. Though I had little, to no, trust or faith in doctors in the past due to many ‘botched” surgeries I had in the past, I opened myself to these “specialists” and gave myself over to their care with open arms. I prayed to God and trusted that I would be put on the right medication. What else could I do?
After 3 months in the study I began notice a drastic change in my behavior and how I felt. I asked them: “Is this what it feels like to be normal?” I was elated! What I did not take into account was the fact that all my other medications had been discontinued and I was in therapy addressing my issues of abuse and had stopped drinking completely.
For the next year it was a roller coaster ride between nausea, weight gain and headaches as they continued to play with dosage and try to adjust my medication. They kept reassuring me that the nausea would pass with time. It did but it was a LONG time passing.
After going as high as 2.500 mg. of who knows what, it was reduced to 1,500 and maintained at that level. The nausea did subside but the weight continued to climb. At five foot, one inch, I was a whopping 165 lbs up from 115lbs.
After one year in the study, I finally learned that I was on the study medication, Depakote. My Mood Chart clearly indicated that I was clearly depressed more that I was manic and I was diagnosed as a rapid-cycler.
It was at this time that my life situation took on more stress as my mother became ill, was hospitalized, I began getting addressing my issues of sexual abuse. I began seeing myself move into a highly manic phase. As I had been in restraints for four days during my first hospitalization, I quickly turned to my therapist and requested I be hospitalized to avoid that happening again.
At this point in my illness, I began to again “self-diagnosis” myself as showing signs of Post-Traumatic Stress Disorder due to the traumatic surgeries and abuse. Before entering the hospital, I called the VA hospital in Cincinnati and requested a diagnostic form to enter treatment for PTSD. Upon receiving it, I filled it out and was not surprised at the results. I clearly was showing symptoms of PTSD.
With form in hand, I admitted myself to our local hospital. After 3 hours in the waiting room and 5 hours in the emergency room, I was admitted to the psychiatric ward. I had not slept for days, was depressed and very anxious. They did note on my summary that I had been sexually abused but again, no mention of my emotional difficulties with living with a facial deformity of acknowledgement of the form the VA that I gave to them.
After 10 days in the hospital I was released with a discharge plan that referred me to the Women’s Crisis Center for therapy. It was there that I found true compassion and healing for the first time in my life. I was 47 years old.
I continued on Depakote and remained in the study for another nine years. I continued using my Mood Chart which clearly indicated many swings into depression, with some being extreme. As for the mania, those too began to get higher. What I did not recognize at the time was I had been charting “mania” when I was clearly just becoming….happy, for the first time in my life.
The danger I have found in these “studies” is that they do them wearing blinders. They do not take in to account the whole person. They want numbers, outcomes and stats. That was all they saw. What I was seeing was someone attending therapy 1-2 times a week, addressing issues of trauma, learning new coping skills, going to college and participating in changing my life style. Because of all this work, I was becoming happy for the first time in my life. What I was charting as “mania” was my first real experience with happiness. Yes, I did have moments of “racing thoughts.” The new opportunities that were being presented to me were, at times, was overwhelming but exciting. Yes, I was doing more and becoming “excited.” Yes, I did believe that I could do great things. I felt I had it in me. These were not “delusions of grandeur,” these were not moments of mania. This was happiness and confidence found for the first time in my life.
During the ten years I was involved in the study, I volunteered to participate in other studies besides the use of Depakote. As I had felt that I had not participated much in my life to making this world a better place. I found this study to be an opportunity to help others even if it meant sacrificing my own life and health.
When Topamax was being studied, I was a prime candidate being more than 50 pounds overweight. I welcomed the opportunity to be slime again. This study was not a double-blind so I did know what I was getting myself into, or so I thought. What I didn’t know was that the “safe” dosage was one of the unknowns in the study. As the pounds began to come off, my excitement went up. At one point I was on 500 milligrams of Topamax and 1,250 milligrams of Depakote. This is when I really learned about the hazards of being in a trial study.
This episode began early on a Sunday morning when my mother and I decided we were on a long day trip to visit a relative in southern Kentucky. After a short visit I began the long drive home I became extremely sleepy. Driving became a huge effort. I had my Mom continually rubbing my neck to help me stay awake while I was driving. Having her drive was out of the question as she was quite elderly. Upon arriving home, I went directly to bed. I did not wake up until 48 hours later. As one who lives alone with 2 dogs, that was quite an experience. When I did wake up I was not aware I was short a day in my life. All I know was I needed to get to work though I was still extremely sleepy.
As I drove to work I was unaware that I had side swiped a guard rail and continued to drive. Finally, at the end of a steep hill, I crashed into a car in front of me at a stop light. I was able to tell the people who stopped to care for me where I was trying to go and they notified my place of employment, The Mental Health of America office. The police had not been called to the site of the accident as little to no damage was done to the other car. We just exchanged information and somehow I got the hospital to be checked out. To this day I do not know how that happened.
At the hospital, many tests were done but the only conclusion that they came to, after speaking with my doctor at the University hospital, was that my Depakote levels must be too high. As there is no way to measure this, I’m not sure how that conclusion came to be. I was also told not to drive.
I was taken home by a friend with a reduction in my Depakote and my Topamax was discontinued completely. I was told to go to the University hospital for follow-up. My friend later relayed to me that I appeared to function normally calling insurance company etc. I have no memory of that conversation or much that happened in the days to follow.
I was told not to return to work until I was completely recovered. Being the stubborn, independent person that I am, I considered one day off was enough. As I lived on a farm and was not allowed to drive, I walked a mile to the bus stop and took a bus to work, in the rain. As soon as I arrived at work, it was apparent to my co-workers that I was not capable of working and one of them drove me home. During my time at home, alone, I was having conversations on the phone with family and friends but have no recall what so ever of these conversations. Apparently I spent most of my time sleeping. It was not until Saturday that I began to be more aware of the state I had been in. My memory of what had happened in the previous week was gone but I finally was alert and aware. As I began to question and piece together information, I was stunned. A whole week of my life was erased from my memory but I had somehow functioned. I was confused, scared and angry as hell. What had caused this? How did I survive?
I immediately began researching the Topamax, as I did not think the Depakote was the issue here. The combination of the two may have been. On the insert for the Topamax I found that loss of memory was a definite side affect. In other research I later found that the recommended dosage was only 300 milligrams. I had been on 500 milligrams!
When I approached my doctor with this information, I was shocked at her response. She broke into tears, was verbally berating me for trying to disrupt her studies and had to leave the room. I was stunned, to say the least. I was told by the counselor in the room that she was reacting to this information because there had been other consumers groups who were questioning the studies at this University and their funding may be in jeopardy.
It was not long after that event that I was released from the study which was of no surprise to me. I had been involved in this research for 10 years. During this period, I had graduated from college with a Bachelor’s degree in Human Services, worked as a case manger and presently was Education Coordinator for Mental Health of America of Northern Kentucky. Though I was working, it was a struggle. It seemed impossible for me to remember the most simple of tasks. It was also at this time that there were life situations that were increasingly causing me great stress. My mother became psychotic and I had to admit her to a nursing home. My brother died in his sleep at an early age and I had all the symptoms of fibromyalgia. I was in extreme pain, again and was finding it extremely difficult to work. It became so bad that my employer suggested that I quit working and apply for SSDI, social security disability. They assisted me in this process and my claim was accepted on the first application. I was devastated. It had taken me 7 years to get a four year degree and I had only been employed for 3 years. This was the lowest point of my life so far.
The following year I found myself going from doctor to doctor trying to find relief for my fibromyalgia. Of course “relief” meant medications. The medication called “Celebrex” had just come on the market and was the first one I prescribed. I immediately found relief from the agonizing pain. I stayed on that medication for almost a year. It was at that time that my stomach bloated up like a pot-bellied-pig. I was having dizzy spells and was extremely uncomfortable, physically. I was immediately taken off this medication with no time for weaning. I went through what I can only describe as severe withdrawal symptoms. I don’t remember how long it lasted but I do know it was intensely painful.
After being released from the study, I finally found another psychiatrist who was connected the Family Services where I was receiving excellent counseling services. After a long interview, he decided to add an antidepressant and lower my Depakote. Within weeks I began to notice a difference. It was as if I had come out from under a huge, heavy fog and the sun was shining. I felt like I was 200 pounds lighter. I was finally experiencing happiness and it felt amazing!
Because of changes in insurance and costs of medications, I went through many medication changes in the next few years. I would still have periods of depression and my constant, suicidal ideation, was always with me. I had always seen suicide as my only escape from the pain for as long as I could remember. My first suicide attempt had been at age 10 and it had become a way of life for me though my last “attempt” had been at in my 20’s.
As my intense therapy continued on a weekly basis, I began to question if I really had Bipolar Disorder or not. I had an excellent therapist who believed in listening to me and allowing me to make my own path rather than telling me what I should or should not do. With her assistance we created a plan for me to taper off of the Depakote. Though my psychiatrist was not on board with this, I did it anyway. She told me that I risked a relapse and possibly being worse than I had been before if I did this. I stuck to my guns and decided that I had to try. I was thoroughly convinced that what I had was depression with psychotic features as well as post Traumatic Stress Disorder and it was worth the risk to go off my meds. I did it slowly and with support and monitoring by my counselor.
Within a short time I began to notice a change in my behavior. I began to bring flowers into my home. I redecorated my house, I started to sing, dance and play music again. Most of all, I started to write. I had not written in 10 years and I am a writer. To some this may sound like mania, and to tell you the truth, I wondered myself, but it wasn’t. One of the side effects of Depakote is loss of creativity and mine was now being reborn. I felt as if I was a flower in bloom and that I was opening up to my creativity, petal by petal.
In 1999 a group of concerned people with mental illness diagnosis confronted the UC studies and brought awareness to the community about the studies there that put people’s lives at risk. The outcome was published in the local newspaper, see:
Now there are champions like Robert Whitaker, Will Hall and others, who are addressing the real issues of overuse and abusive side effects of medications. They are my heroes because I have seen firsthand the harm that drugs can do if not used with moral responsibility that includes treating the whole person, listening to the person and allowing the person to be an integral part of the process with full awareness of the many harmful side effects that these drugs can cause.
In 1997 I wrote my first grant and received $30,000 to produce an award winning video documentary, The Reality of Recovery, which has been distributed nationwide. I created my own production company, PAR Productions, (Promoting Awareness of Recovery) where I work as a Recovery Consultant and presently work as an Education/Peer Specialist at a local Recovery Center. None of this would have happened had I not taken the risk of coming off of Depakote and followed my own instincts.
It has been 7 years since I came off of the Depakote and the changes have been nothing short of amazing. I have made incredible life changes and have grown as a person beyond my wildest expectations. I remain in awe on a daily basis, about all the things I can remember now as a result of coming off of the Depakote.
I have experienced first-hand the harmful side effects of medications and yet I am not anti-medication. What I am against is the issue of big Pharmaceutical Company’s covering up the lack of information about these real issues and research studies that prey on the most vulnerable population to participate in their studies that can do more harm than good.
People with mental illness are discounted and seen as non-compliant if they refuse medication. When they are psychotic, they are not listened to when what they are saying may be a clue as to what they are going through. Mental illness is seen a biologically based when there has been absolutely no proof shown that it is and medications are used when they don’t even know why they work. Now research is showing that trauma is the basis for many disorders and it was definitely the basis of mine.
In 1993 I admitted myself to the hospital because I knew I was having flashbacks and panic attacks. I was addressing the issues of my multiple sexual abuses in therapy and I had opened a whole can of worms. I wrote to the local Veterans Hospital for a Post Traumatic Stress disorder evaluation form and here is what I wrote at the end of it: Sample of Application Statement on Evaluation from VA, 1993
“I want a safe environment to ventilate my Rage and Anger. I want to be able to cry, scream and fight. I want not to shock my body with all this so some drugs may have to be used. I do NOT want to be overmedicated to where I can’t ventilate my rage. I want to be touched, A LOT. I want safety, comfort and support. I want to heal the wounds that, unknowingly, the surgeries have inflicted on me. I want to come out of the hospital with no drugs in my body and a healed soul. You doctor’s have done this to me, now take care of the scars you inflicted and let me live again.”
This statement was of course, totally ignored. The stigma of mental illness does not allow the doctors to see you as having insight or understanding of what you are going through. Luckily I did find help when I went into counseling at the Women’s Crisis Center and have since resolved my issues. Not to say I don’t sometimes have symptoms, but I now know what they are and how to deal with them.
At age 65, I am now continuing to grow in happiness and my passion for educating and empowering others is limitless. Though there are still many obstacles in my path to recovery, I am moving forward with life with hope, gratitude and passion.
I look at my experience of being in a research study as part of my recovery journey. As I wrote while being in a psychotic state: “We are here to teach and to learn.” I hope you have learned something from my experience. I sure have.