Why some people go off meds. A personal experience of ‘noncompliance’. With all the articles and comments about taking responsibility for oneself and one’s meds as a mental health patient I thought I would share some experiences concerning the issue.
As I followed links over a Furious Seasons I find this article.
Getting ‘Off Meds’ Has Consequences
Here I cut and paste some testimonials from the article.
Coughlin said the last time he stopped, in the 1990s, he became extremely obnoxious and agitated, and ended up in a mental hospital.
Now he’s on three mood stabilizers that zap his energy and cause weight gain, but make him feel “more solid, more relaxed, more satisfied in life.
Coughlin, a board member of the Illinois chapter of the National Alliance on Mental Illness, said he finally accepts that to function, he’ll need to be on drugs for life.
Well, there are some people, such as myself, for whom experiencing these same side effects, tremor, weight gain, zapped energy, are too high a price to pay. To us it is a debilitating unnecessary stigmata. It is penance for being mentally ill. It is completely intolerable and unacceptable.
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When I went on meds I was 14 years old. I had no choice at all. I was inpatient, suicidal and psychotic. Every day I did not take meds willingly, I would be restrained and injected with them. It was unbelievable to me that these people could threaten to assault and violate me after all the violation and abuse I had suffered that had led to the present inpatient situation. This completely shattered all trust and faith I had that I could be helped in this place.
I was put on perphenazine and lithium carbonate. In horror I watched my own body betray me. Previously I had been extremely energetic, highly coordinated and very slim. I lost command over my voice as it became slurred and strenuous, I was drooling from the mouth. I lost my grace acquiring the tremoring hand of Parkinson’s as well as the shuffling gait the trademark ‘thorazine shuffle‘.
Then came the lithium and the perpetual dry mouth. Then I started gaining and gaining weight in a constant upward curve. I could taste the psyche meds in my mouth, smell them in my sweat. Previously I had been graced with an exceptionally high reading speed and retention. Now I found I could not read or concentrate on anything for long. Constant memory gapping throughout the day stitched through with a perpetual mental fog The emotional blunting left me without real passion for much of anything while deep inside the real me was screaming nonstop.
They told me I had to take these drugs for the rest of my life and I knew despair. I had come here for help for my depression and was now more depressed and more suicidal than ever before and totally unable to communicate this to anyone. No one was asking or listening. My thoughts and feelings were totally irrelevant. I was told I could not be therapied until I had adjusted to the meds ‘for some time’ since basically they were talking to the disease. No one could explain how this was therapy or how this would restore me to the living. Just the usual “You have a chemical imbalance that needs to be addressed by your lack of lithium”. Explain to me how lithium is going to cure me of my hatred of you? Someone? Anyone?
After spending three months inpatient I was transferred to a juvenile psychiatric group home to learn to live with and accept my diagnoses and the medications. For months I lived in this awful place. Various side effect came and visited me the longer I was on these drugs. I started sleepwalking, experienced UTIs and continued to get heavier and heavier while existing in mental, emotional and physical vegetative state.
After some time there at the on site school, it was arranged for me to take half a day classes at the local high school. The last straw was when one of the kids called me fat. That was it. Before the psych meds I had always been relatively thin primarily as a result of hyper vigilance and PTSD I was so nervous and tense all the time I consumed energy just sitting still. Well, not any longer. I was 15 years old and now had stretch marks where previously I was toned. I no longer had any sexual response. I was a teen. Teens are supposed to have sexual response. I became to so enraged and suicidal at the same time that it was enough to punch through the chemical straitjacket on my feelings. In Bipolar lingo, a mixed episode.
In fit of helpless rage and depression I tried to commit suicide several times in my room that night;. Everything had to be done perfectly with the timed bed checks. As I was experimenting with setting up a hanging it occurred to me that I was about to check out because of this place, the meds, the environment, the hopelessness and helplessness of it all. I said no way. If I am going to check out it will be on my terms so I aborted. The next day, instead of going to school, I fled the facility.
I was eventually recaptured and returned. Upon arrival they put me in isolation. For days I went on a hunger strike and tried to will myself to die. During this time I was detoxing off high doses of lithium and the antipsychotic. My environment was either the Quiet Room or my own room. On the floor or on my state issue bed I lay absolutely still with my eyes closed concentrating on slowing down my breathing and heart rate. That is all I did hour after hour.
On the third day the nurse came and assessed me. I was losing weight. She asked me what I was trying to do. I looked her in the eye with a smile and said “I am leaving”. She went on to tell me that if I continued this, they would re-hospitalize me. This time at the State hospital for forced nourishment. Other ‘treatment options’ would be reviewed since nothing was working. I knew I did not want that indignity brought upon me. So I surfaced from the depths of where I had withdrawn and carried on as though nothing happened.
During my detox I suffered absolutely no negative side effects whatsoever. None. In fact as the hours slipped by I felt only better and better. My mind came back on line. I felt clean and pure and alive again. I could no longer smell the lithium through my skin or taste the anti psychotic in my mouth. I was me again.
Energy surged back. It was like being released from psychic prison as my thoughts soared and gained the familiar speed back. I was free of that slow inescapable death of personality.
When I looked in the mirror I no longer recognized myself. The old me had been slipping away, day by day as the powerful chemicals eroded my personality and poisoned my soul. I could not stand to spend one more second of one more minute of one more hour on those drugs. I had had enough. No more. I wanted my body back. I wanted my intelligence back. I wanted my feelings back. I would rather suffer or die than be on psychiatric medications ever again.
As a result of my experiences I was unwilling to try medication roulette by experimenting with other psych meds. I had been poisoned. As the side effects of the meds slipped away, all my internal turmoil was revealed. There had been no therapeutic value to my time on meds at all. The mania and depression was still there. The Voices were back. The flashbacks were back. All my problems remained. They had never left me. I had left them.
When my body chemistry was normal again, I was faced with my internal world again as well as a heightened awareness of my circumstances living in close quarters with other mentally ill residents. I had lost six months of my life to those drugs. Six months that I could never get back, completely wasted. I now had to recover from being on psych meds. Starting with losing the 80 plus pounds I gained.
As the lights came on and the fog cleared I was able to pay attention and think clearly. My attention was drawn to the Patient’s Bill of Rights which stated that patients over the age of 15 had the legal right of consent, to refuse consent, to medical treatment. As long as the patient is not a demonstrable threat to self or others than can not be forcibly medicated and may refuse medications or other treatment.
In order to prove I was no longer symptomatic I borrowed a spare copy of the DSM from my Pdoc and studied the symptoms of bipolar. I committed the symptoms to memory and began a program of mind over body self discipline. There was no shortage of downtime in these places and my release depending upon a perfect illusion of normalcy.
Every day, all day long I self monitored my expression, my posture, my voice and words. I was forced to learn to maintain total composure and submissiveness under the stress of living in this place. Buoyed by the possibilities I gained a spark of hope which helped keep from being genuinely depressed. I studiously learned to control my pressurized speech and constant fidgeting from the energy racing in my head. I basically used self applied cognitive behavioral therapy. In short, I learned to conceal both the depression and the manic symptoms flawlessly. A performance under constant observation.
There were several consequences of my decision to go off meds. For one, my grandparents, upon hearing I went off meds refused to let me step foot in the house again thus terminating my occasional weekend breaks from the facility.
Second, my social worker called and said, “You went off your meds? That’s noncompliance! You think you are ever going to get out of there if you can’t show compliance with your treatment? You are in a lot of trouble you had better get back on your meds right away.”
I then leaned on my guardian ad litem. I explained that I wished to apply for a writ of habeas corpus. I had not been depressed or manic, neither suicidal or psychotic in two months. All my reports were perfect. I was a model resident apparently free of my illness and no longer on meds which I said had not helped me at all. I wanted out. I was stuck here, not being treated for anything.
My guardian ad litem squared off with my social worker in court over this since my SW refused to consider taking me out of that facility. I was allowed to speak to a judge and I pled my side of the story. I admitted that yes, I had had problems, but what teenager does not have emotional problems? It’s part of puberty and growing up. Yes I may have had a rough childhood, rougher than some, but less rough than others but that was no reason to force me to serve out the rest of my teen years confined in treatment on drugs that don’t help.
He listened to me. He pointed to my social worker and told her to make it happen and find a less restrictive placement for me at once.
I did not have to go back on meds and I had learned how to mask my symptoms from the outside world. I still hated myself, The manic and schizo affective tendencies where still there. I still wanted to die. I now knew how to project an artificial personality that could pass as *normal* when I was far from it deep inside. I learned how to control the outward, visible symptoms, without using drugs at all. I had no choice whatsoever but to impose my will on my behavior.
In this video I talk about the specifics of learning to control bipolar mania.
I chose to go off meds because I could not stand to be on them one second longer. It was a complete internal revulsion and rejection of what the meds had done to me. You could not convince me to taper off them if you tried. I wanted to be free of the *therapeutic* effects of those drugs post haste. Not one month, or two or three or six months down the line, I wanted my body back immediately. I wanted my thoughts back *now*. Every cell of my body, every nerve, every beat of my heart, every breath I took demanded it.
Later I was told that all sorts of horrible things could have happened to me coming off those drugs, at those doses, that completely. No one took it upon themselves to inform me of withdrawal. What do you mean, withdrawal, this kid is not withdrawing off anything, this kid is to be medicated for life. That was the treatment plan. Even had I known, it would have not daunted me or slowed me down in the slightest. I was a teen and I did not want to be on drugs anymore.
You have to understand. Every day I was on meds, I felt violated, damaged, hollow and filthy. I was not myself. I was disgusted with the perpetual side effects. By going off meds swiftly, those side effects went away quickly. Nothing less than immediate freedom from psych med influence was acceptable. There is a point where you draw a mental line in the sand and say no more, not one second will I tolerate this. That is how and why I went off psyche meds, against recommendations, in violation of my treatment plan, without the knowledge or supervision of my supervising psychiatrist.
People seem to be surprised when they hear how people like the NUI shooter was ” anything but a monster. He was probably the nicest, most caring person ever.” Pressure and stress can cause a person to partition their mind and project different personality’s.
I know at least, that thanks to my psychiatry nightmare experience I learned to conceal any evidence of my constant internal suffering from even mental heath workers at close contact with me. I learned how to hide it better and more effectively than before for fear of ever being *treated* for my problems again.
Over on my youtube channel I made videos complaining about these side effects and lo and behold I get people who says thing like this.
From someone calling himself
risperidone786
“I am sorry for you, you must go to your psychiatrist and I am sure he will find an alternative medication .I know side effects are troublesome, but medication is the mainstay of psychosis/bipolar .I know no shrink wants to give us side effects, but for me , I know suicide risk is high in psychosis and bipolar, at least these drugs make me live! Side effects ? I would rather live and bear some sleepwalking ,than attempt suicide or put myself in situations in which i might hurt myself.”
I said “It is no one’s responsibility to keep you alive. You must find a reason to live.”
I can’t say I understand at all why, when anyone experiences bad reactions, they go back for more! Once you have these things in your system and realized that you are still the same inside, how can you say, ‘doc let’s try a different drug’?
I am constitutionally incapable of understanding why people keep playing with different meds. Nor do I understand the attraction of trading out side effect profiles to subject yourself to other, different side effect profiles. I don’t understand how either a patient or a doctor can say. “Well let’s put you/ try me on something else, and see how that goes.”
People ask me why I did not try other meds other than lithium or perphenazine. I ask back, “how can you even ask me that after I just told you what I suffered while on them?”
The nightmares in your head can not be cured by any pill. You can’t get self love and self esteem from a bottle. It comes only from inside.
I am biased by my experiences and I know it. It is hard to refrain from being judgmental of adults who willingly play with medication after medication. I knew as a teenager these were ineffective at healing my problems as well as being toxic to my normal function. I was unable to bullshit myself into thinking this was for the better, for my own good, or preferable to living in my normal undrugged state.
Perhaps someone will come along and explain it to me.
