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.”
Susan Strickland says
My mother has just died few days ago – she has had dementia (supposedly Alzheimer’s and vascular) . I await to see the results of her brain donation!
Anyway what I want to say is, she has wanted to die for years, and the last few weeks/months she has eaten and drunk less and less (whether due to desire to end her life, or lack of hunger/thirst I don’t know) – anyway some weeks ago she refused to take any more medications and only accepted maybe a few spoons of food or drink a day. Yet as she died physically she was so much better psychologically and cognitively!! Before she was so aggressive and angry and resentful (especially when she had repeated infections such as urinary ones or pneumonia) – now she was calm and almost happy, and she could remember and talk about things she had been unable to access/ remember for years and years!
I know when she was put on Aricept it made a huge improvement to her short term memory (eg before she would say the same sentence over and over again every minute for ages, and that almost stopped, though her longer term memory did not improve).
But also she was on some kind of anti- depressants (especially once in the nursing home and finding it so hard to deal with, being very private and antisocial) and I wonder if they (or any other medications she had been on) could have made her worse …
Interestingly, when she had her urinary and pneumonial infections she was so much calmer and better when on IV antibiotics – as soon as she was off them, onto pills, she went really bananas and awful again …
diana says
please, please, please, use caution if you’re taking a benzodiazepine! do not cold turkey! taper off slowly, but taper off it. so many folks caught up in the ugly trap of akathisia. I wish someone would have told me sooner, “it’s the drugs!!” and it isn’t just the psychotropics. question and research everything, particularly the meds administered prophylactically and recommended for the “rest of your life.” your life might end up being shorter than you imagine.
Jim Seko says
Thank you, Diana, for commenting on my story. It can be very frustrating try to tell someone their medications are doing more harm than good.
I was hospitalized at one point but I had learned about akathisia through personal experience so I refused to take any medicaton without knowing the side effects.
I saw a patient who was behaving in a such a way that I knew he was experiencing akathisia. My first clue was what he said after I asked him, “Why are you here, seeking treatment.” He said, “I’ve lost the will to live.”
There were other signs of akathisia in addition to feeling hopeless. I asked him what medication he was taking and he said, “Seroquel” I suggested he talk to his doctor about side effects. The next time I spoke to him he told me the doctor assured him the medication was not causing him to feel suicidal.
Later on a nurse confronted me and sternly reprimanded me for planting irrational thoughts in another patient’s head. It’s very frustrating to get other people to understand!
annie says
In today’s medicine any random person can walk over the threshold of a building and come out tainted.
Random X is honest and perhaps says things that have never been divulged before.
Honesty is then rewarded with pills with titles that Joe Public does not understand such as ssri and benzodiazepine. It is unlikely that a description of ssri or benzodiazepine is described. It is more likely that the advice is ‘take this to feel better in yourself’.
If you don’t go back it is unlikely that anyone will suggest stopping the pills, so swallowing is taking instructions from a superior mortal.
If you continue to go back it is likely that Y is exchanged for S and P is exchanged for G and Z is exchanged for L and so it goes on.
Muddled and confused could go on like this for years.
They don’t take their own medicine, so, their powers, in, the, end, make you realise how far down the pecking order of civilisation you have become.
It is outrageous and cruel and if a few insults come your way as well, you should dump the pills, avoid all doctors, and keep your honesty to yourself…….
Your doctor knows nothing….except a rather lucrative position…over you.
Brooks Witzke says
Ms. Susan Strickland, I’m sorry about your mothers passing, the doctors may have had your mother on mirtazapine, which is an older, dirty anti depressant that is used as an appetite stimulant in the elderly, which would explain her loss of appetite after stopping. You did mention that her memory got better when she stopped taking the antidepressants, this would be consistent with the fact that SSRI drugs downregulate the serotonin transporter causing increased serotonin in the synapse leading to impairment. When the drug was ceased she may have gone back to normal. This is why a lot of anti-serotonin drugs can be used for cognition
Bri says
I can totally relate to this article. Because of emotional problem a doctor put me on anti-depressants medicine. From their it was downhill all the way, with at least 4 hospitalizations and eventually a lost of my job. When starting the medicine it seemed to work but only for a short period of time, then after that a dull sense of apathy sets in. Continues on until you start feeling depress because nothing in life seems interesting to you any more, from there the doctors will usually up your dosage, about that time a full blown depression sets in. Of course your not told it could be the medicine doing it, what they usually have you believe is that it is a natural progression of the disease, and then the doctors start adding other medicine to the mix. That is where things got so bad for me that there was a very real threat to my wanting to end my life. Somehow down the road I begin to make the connection that the medicine was the problem. I changed my diet to a healthier diet of a lot more fruits and vegetables and a lot less meats and fats, and some doctor I had during that time had the wisdom to greatly decrease my medicine. The change in my moods at first where astounding, I remember asking myself whatever happen to my depression that I was living with for so long. It’s now been about 3 years since taking any psychiatric medicine and I feel much better in many ways, for more interested in life and more active socially. Truly beware of being over medicated.
Geena says
I am happy for you, Jim. And I can relate.
Back in my thirties, I was sad and having trouble sleeping at the end of a love affair. Because there was “mental illness” in my family, the psychiatrist pronounced me chronically depressed and put me on a tricyclic for depression and a benzodiazapine for sleep. Fast forward to many years later, having never been told that such drug use should be a transient thing, and never noticing side effects, the long-term antidepressant use (switched to SSRIs when they came out), “flipped” me into a manic state…aha, said the psychiatrist – you have manic depression. Fast forward even more years until I finally woke up and took matters into my own hands. Determining that I never had depression – only sadness and sleeplessness related to a break-up, I told the then psychiatrist my plan to taper off. His advice was “good – the less drugs the better.” So I tapered off (by then it was lithium) what I thought was slowly enough, only to have “manic rebound”…thus alarming my family. They hounded the doctor, who then hounded me – to come in and go on a new drug. Finally, when I would not, my family alerted the police, who banged on my window one day. By then, I was much better and did not let them in. As they left, they shouted at me, “Next time we come back, we will bang down your door.” Getting off the benzo (by then, the dose had increased as my body had gotten used to it) was yet another horror story….but I am glad to say that I am drug free and my life is just fine. Everything I feel I know is my own self feeling it, without any drugs coming in between in any way. I never had a “mental health condition”, though I did go to a psychologist for a time over “life problems” – not dissimilar from other people’s problems but my own set – and I needed a supportive ear.
I have come to distrust most of Western medicine. Though my daughter’s life was once saved by penicillin when she had meningitis, I scoff at most of the medical field – perceiving it as free of ethics and morality for the most part, and as a demon force for making money. I will never put another prescription drug into my mouth without asking many, many questions first.
I read on Dr. Healy’s blog of the hounding he and his colleagues are getting at their place of work. It can only be traced back to the fact that they stand for the truth – not for marketing – I have seen too much of this sort of witch hunt up close and it turns me off to most of medicine in general. The SSRIs, which can cause suicidality, have taken too many lives and the truth must be out in the open about their dangers, along with the dangers of death due to the atypical antipsychotics and other psychiatric drugs (along with other classes of drugs). I am thankful that this website exists – let the truth be known. “Let the buyer beware” is an unconscionable stance when it comes to medicine, and doctors who go along should hang their heads in shame.
Altostrata says
Thank you for your story, Jim.
Many, many people are overmedicated. When they realize this, often they find their doctors will not help them reduce the drugs. Unfortunately, they are left to their own devices to go off drugs.
Please, please do not ever suddenly quit a psychiatric drug (unless you are experiencing life-threatening adverse effects). Withdrawal symptoms can last a long, long time — months or years — and can be a lot worse that those side effects that made you so miserable.
Instead, when minimizing your drug burden, go off psychiatric drugs gradually, by tapering. Go at a rate that causes nearly no withdrawal symptoms — don’t shrug these off as trivial, they’re a sign your nervous system is in distress. (One of them can be akathisia.)
People who are very sensitive to dosage changes may wish to taper by 10% per month, to allow their nervous systems to adjust. This may mean making dosage decreases smaller than 1 milligram.
See more information about tapering specific drugs at http://tinyurl.com/42ewlrl, part of my peer support site for going off psychiatric drugs, SurvivingAntidepressants.org.
Rory says
Willful ignorance is the best description I’ve heard yet. I was calling it arrogance as in too smart to be teachable attiude of most physicians today. Thanks for your stories all. I’m recovering from 5 years of over medication by y doctors, those whom I trusted to have my best interest in mind. My psychiatrist was the worst offender by far. He had my medication list from the other doctors I was seeing, he just ignored it. By last April I was on no less than ten psychoactive medications at one time, every day. The longer I took meds and the more meds I took the sicker I became. And not a single doctor regocnised that it could be the meds , except one. I took my list to him and told him I was ready to check out, literally. He took a quick look at the list and said ” Oh my God! Who prescribed all this ? ” I stopped 5 meds that day. The withdrawal was hellish but I’m glad It’s over, for the most part anyway. It saved my life, I know that without a doubt.
It is a crime what some doctors are doing to the patients who trust them. Willful ignorance.
Dorrit Cato Christensen says
Jim I am,so harpy that you got out of this dangerous drug/drugs. Akatasia is a horrible side effect. No one should ever have to suffer from that. It is a crime that many people are more or less forced to take those drugs and very often in an overdose. My dear Luise was forced to take the drugs, and every time she complained about the side effects the psychiatrists answer was that she needed more drugs. My Luise was so over medicated that she had no energy to fight against the psychiatrists. I could just stand next to her powerless, as nobody wanted to listen to me. I was always told that I should Not talk medicine as that just made my daughter more ill. My dear Luise died while in treatment because of this arrogance of the specialists. Again Jim. I’m so happy that you quit the medication and Got back Your normál life. Warmest greetings Dorrit
Me again says
A couple of vaguely related observations I have made on my “mental illness” journey are:
1. Cannabis users: They use too much, they get hooked, it makes them mood swingy and miserable and they end up seeing their Doctor, who tells them what they are doing is “self medicating” and what they really need is an antidepressant. This is a very attractive proposition to potheads who like to get high; free, clean and risk free drugs! What could be better? The “self medicating” hypothesis is an easy trap, what they end up with is a whole new and even worse drug problem, when the real solution was, quit the weed and go through the withdrawal and get back to yourself. This can take a much longer time than is usually recognised.
2. New users of antidepressants. They take them and go up, then they stop and crash down, so they see their Doctor who instantly jumps to a diagnosis of bipolar and gives them lithium. This is one way of becoming trapped in the psychomeds cycle. The lithium doesn’t take them back up, so they see the Doc again, who looks at his Ladybird Book of Mental Disorders and starts suggesting an antipsychotic such as sodium valproate, and there you have it, another person trapped another, brain scarmbled, another life ruined.
I’ve seen this, more than once, it happens and it’s a tragedy.
Jonathan says
I suffered akathisia following abrupt Zoloft discontinuation paired with Luvox cross-titration, leading to horrifying impulses to jump in front of oncoming traffic. Until this, I never *got* what all the hoopla was about regarding those BLACK BOX warning labels on SSRIs. I’d been told that suicidal thoughts and actions were merely the drugs “energizing” suicidal patients to go through with it. Problem with me was that my diagnosis is OCD without comorbid depression.
I’m better now, 6 months later, being off ALL meds after 15+ years of use. Still, I will never forgive my incompetent bonehead of a doctor for his reckless tinkering with my Rx’s. It was HIS responsibility to know better about how to proceed in the withdrawal process to minimize patient risk.
I now consider myself to be a psychiatric “survivor”, someone who was HARMED rather than HELPED by the psychiatric profession.
Robert says
I’m currently suffering from this awful side effect. Took seroquel for sleep and now I feel like I’ll never sleep normally again…