Childhoods are difficult to remember in detail. My first few memories were about the age of 2 1/2, maybe 3. I had chickenpox and I got an encephalitis. I didn’t know that this is what it was until years later, when I became a medical provider. My experience was that I visually hallucinated (the one and only time in my life). I saw a wrought iron fence around my bed with a pit of snakes that I “jumped” over and ran into the hallway to my parent’s room. I remember seeing snakes climbing all over their arms and they told me that I thought their arms were snakes. I remember seeing my nursery school class projected on the bedroom wall riding a merry go round with all kinds of reptiles all over the amusement.
My parents took me to Dr. Abraham (our family Doc) who carried a little black bag and did house calls. My mother told me he shot me up with phenobarbital and that was the last I remember of the Chicken Pox. I guess I recovered. No hospitalization. This was over 40 years ago. I tell this story because it was my first experience with madness albeit induced by a virus and treatment with a drug.
Overall, my childhood was quite abusive. I remember feeling afraid, alone and sad. One of my first memories was sitting on my stairs at Christmas time crying and saying no one loved me. I was about 3. Why would a three-year-old think this?
When I was 7, I threw myself into traffic in NYC on purpose and almost got hit by a car. I did not have a conscious thought that I would die. I didn’t know what dying was or why I did this. Looking back, I think it was because my father was being his horrible self that day and verbally abusing us and I did it as a result of this awful feeling inside that became who I was. My father pulled me out of the way of the car and then proceeded to hit me repeatedly on the street so hard I peed my pants.
There was almost constant yelling and fighting, between my parents and a severe emotional and verbal abuse that was my father’s way of parenting. He was really a tyrant who was domineering and a thought controller who enjoyed terrorizing as a means to control his family. He was an alcoholic, racist, who chastised, name called, derided, humiliated and bullied me and my older sister. He compared us – who was smarter, dumber, prettier etc and pitted us against each other. My sister was vilified as fat, stupid and greedy. She was also redeemed as the “happy” child. She had a lot of difficulty in grammar school because she thought she was stupid. She grew up believing this lie and it wasn’t until adulthood that she learned she was capable of many things and in fact not stupid.
I was vilified as the child who was “not happy” “who was going to need a head shrinker”, the one that looked most like a Jew and the least pretty of my sisters. My father was of Irish Lithuanian descent and my mother Ukrainian Jewish descent. I believe I experienced my father’s wrath the most in some ways because I basically even as a small child called him on his crazy.
My mother also was a victim and a perpetrator. She too had a very unstable personality and was quite depressive verbally abusive and emotionally absent at least to me as a parent. She would fly into rages and lock herself in her bedroom for days on end. She also in my experience had a complete absence of empathy. She was cold. She terrorized me with her rages. One of the earliest memories was at my father’s building of our house when I was about 3. She was screaming at me at the top of her lungs and locking me in the back of the station wagon because I guess I was supposed to take a nap. I only understood I was scared to death to be locked in the car and remember my mother’s screaming and leaving me.
Another time, when I was about twelve, I was making frozen waffles before school and didn’t realize the toaster wasn’t plugged in, so I was standing there waiting and my mom came downstairs, screaming, yelling about me taking too long and that I was going to make us late. It was so intense, the yelling that I took out the waffles and ate them frozen in shock.
My older sister and I used to get left alone once in a while when she was around twelve and we would be so happy when they left the house. The whole air of terror lifted and we could relax for a while and breath. We would look out my father’s office window when we heard the car drive back up the driveway and the smothered horrible feeling that I remember to be my childhood would come back.
My aunt, my mom’s sister was a savior as was my mom’s mother. They protected me from my father. They tried to be around as much as they could but even with them around he would be abusive, and I remember him whacking me at the dinner table and throwing his arm around the front seat of the car and whacking me while driving. I remember my grandmother just holding me and listening to me cry and try to comfort me. I loved her so.
My aunt tells me that she remembers my older sister calling her on the telephone when we were little (I was less than ten) and crying saying that “daddy is going to kill my sister” and begged her to come over. I don’t remember this. My aunt and sister both do. My aunt said she called child protection services that day and they told her that unless she thought my father would really do harm to us physically the best thing she could do is not report it and be around us as much as she could, because most likely they wouldn’t take us away. This was many years before mandated reporting etc.
So things were less than great growing up but we all “survived” and I excelled despite this in sports and school. I was a competitive gymnast for about 8 years and a straight A student but overall a depressed kid. There was a bout of anorexia around the age of 16 – I weighed 100 pounds at 5’5″ and my parents took me to some psychologists who didn’t really help with that or my depression. You can’t really help a child with crazy parents. That was my first run in with the mental health system – no drugs. I started eating normally on my own again at some point. I applied to two colleges, Carnegie Mellon U and Fordham U and got into both but decided to go to NYC for school. I wanted to be a writer, but that all changed when I fell into madness.
To make a long story short, I had no center when I left home for college. I was a shell of a person. Add in the stress of college, NYC, too much alcohol and you have the perfect recipe for madness. I became anxious, paranoid, depressed, and at one time had a bit of what I could guess could be characterized as hypomania or elevation of mood with some rapid thinking and severe difficulty concentrating. At my worst, I felt a deep deep depression – black really. I couldn’t focus my thoughts. I was also paranoid and my paranoia took the shape of my father’s abuse. He would typically intimidate us with hateful horrible stares and then deride us and so my paranoia followed that theme of the outside world criticizing me, vilifying me, staring at me, judging me. It felt as if I had no center and the world was caving in upon me. I would drink ETOH to quell the paranoia also. It was sort of a vicious cycle.
This led to suicide attempts and hospitalizations. College was on and off and then eventually I left NYC and school because I was too sick. During this time I was treated by a doctor who tried Lithium first which did nothing. I was also put of Zoloft for a short period of time and I remember this making me feel agitated and he stopped it pretty quickly. I don’t think I was on it for more than a week or so. I then was put on a combination of Tegretol and Anafranil. The Anafranil caused a severe panic attack on first dosing. I thought I was going to die. I’ve never had a panic attack like that since. The doc said it was the medicine and it would level out. It did. I continued on those drugs for about 5-8 years. I remember feeling drugged and sedated all the time. I could take a two hours nap and still sleep 10-12 hrs per night.
My thoughts were better though than they had been when I was acutely ill and through intensive psychotherapy, I began to get my life back together slowly. It took years of therapy (20+) and the love, kindness and support of my therapist. It was a day by day affair and we contracted for my safety each week.
I eventually went back to school, worked my way through college because my parents of course blamed me for getting ill and got a nursing degree. A friend of my sisters was a nurse and I took some pathophysiology and anatomy course and really liked it. I always have loved science and did well in both math and science in school with a special affection for biochemistry so the nursing thing started off really with an interest in that. I graduated and got a job and went back to grad school for what I do now.
I stayed on the Carbamezapine until a psychiatrist thought Depakote had a better side effect profile in case I wanted to get pregnant (really she thought this). I went on Depakote and off Tegretol. This was in 2002. At this time, I tapered off the Anafranil myself because it was so sedating and I experienced flu like symptoms and all those electric shock-like sensations that are now known as antidepressant withdrawal syndrome. I knew it existed by experience 10 years before there were label warnings.
I switched psychiatrists for an arbitrary reason at some point and followed with this psychiatrist for 15-20 years until recently. I came to realize that he was very convinced that people are their DSM diagnosis and don’t have a chance at recovery off drugs or without them. He at one time diagnosed me with ADHD and tried to put me on Strattera which I think I took one pill of and I felt revved up. It was uncomfortable and scary. He also tried to put me on Zyprexa which made me feel crazy so I didn’t take either drug for more than one or two doses. I always thought the test he gave me for the ADHD was particularly peculiar way to diagnose someone with something that seemed like a bizarre illness to begin with.
Anyhow I went on living my life doing pretty well not realizing that some of the things I experienced for years were side effects of the Depakote. I was told I had a serious illness that required drugs for life. What I was told in essence was take the drugs or go mad. Not exactly a great choice. Going mad isn’t fun, I’d already been there and never wanted to go back so I took the drug that supposedly was “fixing” my brain.
I had sedation, nausea, agitation, anxiety, heat intolerance and temperature deregulation, Raynaud’s Syndrome (full fledged white blue red) in response to cold stress exercise and livedo reticularis, butterfly rash across cheeks, restless leg syndrome, hair loss by clumps (thank god I have a lot of hair), diarrhea, light colored stools, heart palpitations and shortness of breath. That’s only the tip of the iceberg.
I am an athlete and continued running, bike riding etc and then about 4 years ago noticed I had reduced exercise tolerance and felt short of breath. I went to a pulmonolgist who did a workup and diagnosed me with exercise induced Asthma. At that time, an echocardiogram was done and showed some mild heart failure. They never mentioned this to me, but I saw my test results.
Flash forward 2 years later and while climbing down my staircase I hopped over a baby gate and landed on my foot wrong. I fractured quite badly my fifth metatarsal in my mid foot. I passed out from pain, it was 5 mm displaced (almost through the top of my foot) and went to the ER to have it reset. They numbed me up pushed the bones back in place and casted me for eight weeks of non-weight bearing and crutches.
I have a pretty high pain tolerance and only took a small amount of Ibuprofen for pain (maybe 600 mg daily) and some Zantac because the Ibuprofen bothered my stomach. Then I started getting really sick. I would have episodes of dizziness, feeling like my heart was stopping, like I was going to die or pass out, nausea, emotional lability, anxiety, memory loss, insomnia, sedation at other times, high blood pressure (my pressure is usually 90/60s). I went to a few different ERs several times. No one could figure out what was wrong with me until one ER doctor checked a Depakote level but never told me it and sent me home not knowing what was wrong. I looked at my test results when I got home and my level was 100 which was quite high for me. I called my psychiatrist and he didn’t know why it was high.
I started investigating the pharmacology of the meds and figured out the Depakote could in fact interact with Ibuprofen and the Zantac and at the higher level of Depakote – I was taking 1250 mg a day – in fact was probably part of the issue. My doctor had switched me from the ER Depakote to the DR years earlier because of insurance and I came to find out that the DR needs to be dosed differently and it was dosed the same by him. So I was getting more Depakote all along than I previously had. I probably wasn’t as good at getting levels checked as I should have been but I was the patient not the doctor and he didn’t tell me now important a level was before he gave me a script.
I kept getting sick and went to a different ER. I was thinking it was my drugs. I started reading about hyperammonemia. At my prompting, an ammonia level at a different hospital ER visit was checked and was high – almost 70. Of note on all these ER visits my Na was in the 130, 129 range, my TSH was 10 with a normal T4 – on the FDA insert there are reports of altered thyroid function – “of unknown clinical significance”.
I was terrified and told my doctor who had never heard of this.
I stopped the Depakote.
Next week – Coming off Depakote