Editorial Note: This extraordinary account of what it can be like to live on psychotropic drugs came by email out of the blue from Jim Seko. For the record, it looks from here that Jim cannot have had schizophrenia. His original problem almost has to be an acute and transient psychosis. The tragedy of these states is that they sometimes do lead to a life dulled by drugs.
Feeling much better after stopping a treatment is not something confined to psychotropic drugs – many people report something similar after stopping statins.
I was diagnosed with “schizophrenia” in 1979 at the age of 18. I’m a high-functioning schizophrenic so I’ve been able to cope with my illness without medications for most of my life.
In 2006 I had an episode of psychosis and I was treated with anti-psychotic medication which was appropriate at the time, in my opinion. After coming back to reality the psychiatrist suggested I take moderate doses of anti-psychotic medication as a preventative treatment. I thought it was good advice even though I had lived two decades without an episode of psychosis. I thought it was good advice even though I was very familiar with the insidious side effect called akathisia.
Akathisia is a feeling that’s impossible to describe adequately. Restlessness doesn’t begin to describe akathisia but a ghost writer would be fired if he used the words, “it makes you want to jump out of your skin”.
Mild akathisia is even more difficult to describe and it’s even more insidious than severe akathisia because you are very unlikely to know it’s even happening. It makes you appear calm on the outside but on the inside something doesn’t feel quite right. Mild akathisia seems like no akathisia at all from the doctor’s point of view. How insidious is that?
Ask anyone who knows about akathisia, first-hand, and they’re likely to say, “I didn’t know it was happening until after I stopped taking the medication.”
I didn’t know it was happening to me even though I was quite familiar with more severe akathisia. Over the past 35 years I’ve been on these medications and off them several times and each time I stopped taking them I would have the same epiphany. I didn’t know the medication was making me feel awful until after I stopped it. If mild akathisia is so bad why didn’t I learn my lesson sooner and not take the medications again? How could I have been fooled over and over again?
After this episode of illness, I applied for full permanent disability from the VA. This meant sixteen months of being unemployed and waiting for the VA decision which was quite stressful. I continued to take the moderate doses of the medication. I was depressed but I attributed my depression to the shame and guilt of being fired and not being able to work because of my illness.
During those sixteen months, I had suicidal thoughts often but I didn’t follow through because I didn’t want to hurt the people who love me. I wondered what would happen to my wife and kids if I killed myself. It believed it would be beyond traumatic for them. In my mind, I went through many bad scenarios of what would become of my family if I offed myself. My wife is a shy person so I reasoned she would be broke and lonely. I pictured my kids becoming drug-addicted delinquents. I couldn’t go on living like this but I couldn’t leave my family to a doomed future. I thought about killing all of us……
I still feel shame and I get emotional when I think about it. What is wrong with me? I’m a terrible person! I was so ashamed of these thoughts I didn’t tell anybody, not even my therapist or psychiatrist.
When the VA decision finally came about I was quite happy but that happiness didn’t last very long. I went back to feeling mildly depressed and I couldn’t figure out why. I continued to take the moderate doses of medications.
In 2008 I took my wife and kids on a Caribbean cruise! My wife and kids said it was the best vacation ever! For some reason I didn’t really enjoy it. I wasn’t particularly unhappy but it just wasn’t nearly as fun as I thought it would be. I didn’t know why I felt this way.
Recently, I asked my wife to think back to the time when I was on this medication. She said, “It was like the person I married went away.” After the Caribbean cruise, it finally dawned on me that the medication was affecting me. I stopped taking it.
I immediately felt better. I said to myself, “How could I have been fooled again?”
The next time I spoke with my therapist, I told him I had stopped taking the medication. He was not thrilled and tried to talk me into taking it again. I told him about the negative side effects but he seems to be listening-impaired. I told him I was much happier without the medication and he said, “You’re too happy! You’re euphoric!”
I replied, “Of course I’m happy! I feel like I’ve just been let out of prison!” To his credit, I was a bit manic due to stopping the medication abruptly but the mania passed and I’ve had no episodes of psychosis since discontinuing the medication.
My wife knows all about this but she still doesn’t seem to get it. She has recently been taking a combination of medications and not doing well. She ended up being hospitalized.
Last Saturday, the second day after admission, I visited her. She looked happy for the first time in a long time. She was smiling and making eye contact and talking to me and listening. Two days earlier she was scowling and distracted and jumpy and irritable and miserable enough to seek admission.
I said to her, “You look different. You’re smiling and happy! What happened?”
She said, “The doctor thinks it’s akathisia and he’s reduced the dosage.”
My wife is coming home today and I’m very happy right now. But last Saturday I had mixed emotions. I was happy my wife was feeling better but I was angry at the doctors for causing so much pain due to their willful ignorance. I was angry at pharmaceutical companies because my wife had said:
“I didn’t know the medication was making me feel awful until after I stopped taking it.”