Tuesday, 12 March 2013

Why do Schizophrenics Come off Medication?

Every so often, the news tells the story of someone with a mental illness who has committed an atrocity after coming off their medication. Along with the 'This proves that people with mental illnesses are violent!' squad coming out, the question is asked about why the person came off their meds. If the person was well on their medication, why did they come off it when they knew they would become unwell again?

If it was as simple as that, everyone with a mental illness would stay on their medication for life. Even I, with my anti-medication opinions, would have stayed on my meds if it was as simple as being well and staying well. All medications have side effects but psychiatric medications have some of the worst side effects imaginable. Antipsychotics, the main medication for people with schizophrenia, have horrendous side effects that even psychiatric nurses can't comprehend. In the second hospital I was in, most of the nurses and HCAs (Healthcare Assistants) were really understanding about side effects and tried their best to help, but even they, as caring and helpful as they were, couldn't see how painful and upsetting the side effects were.

One of the worst side effects is akathisia, a side effect I write about a lot as I still suffer with a mild form of it today. In my second hospital stay, there was a patient there who had the severest form of it imaginable. From the moment she woke up to the moment she collapsed into bed, she walked nonstop. She was unable to sleep for longer than about half an hour at a time, and nights for her meant a lot of walking around her room, trying to fall asleep for even a few minutes. She told me that she got about three or four hours sleep a night, and walked the rest of the time. On top of that, the night HCA would shout at her for all her walking. This HCA was not one of the caring members of staff here and would make this patient's awful existence even worse. Thankfully the night nurses were a lot kinder to her but they still couldn't understand why she didn't just sit down. This patient lived like this for at least six months, until finally, she was able to sit down, sleep and relax.

Would you want to stay on a medication that did this? Granted, this level of akathisia is rare but even the milder forms of this side effect can drive a person to suicide. The level of akathisia I had was a much more common level, and still, this was enough for me to beg a student nurse to kill me. My akathisia was treated with procyclidine, a medication that helps with some movement and other muscle disorders caused by antipsychotics. Despite the procyclidine taking the worst of my akathisia away, it couldn't be given at night, when akathisia is worse, because procyclidine causes a 'buzz' that stops a person from sleeping. However, the akathisia would return at night, and I would spend the wee hours walking up and down my hospital room, hoping that I would be able to fall asleep for the night and only wake when I was given my morning meds, procyclidine included. This rarely happened, and my nights were spent walking round and round my room for five to ten minutes at a time. This enabled me to lie down for a minute or two before having to get out of bed to walk for another five to ten minutes. When I felt exhausted, I would try and fall asleep in the short space of time I had in bed, but would usually fail on the first few attempts. There were times where I was so exhausted that I would fall asleep whilst walking.

This is just one side effect of psychiatric medication. Often the medication causes bowel side effects, either constipation or diarrhea, and when a person is suffering from akathisia the last thing they want to do is have to sit down anywhere, a toilet included, for any length of time. Some side effects are embarrassing, such as hypersalivation (drooling) and urinary incontinence. Other side effects are extremely distressing, such as drowsiness to the point of sleeping for 16+ hours a day and terrifying nightmares. Plus of course, there are the 'normal' side effects, like headaches, vomiting and abdominal cramps and the side effect that almost everybody gets from antipsychotics - massive weight gain. I gained nearly six stone (84 lbs) and went up six dress sizes from antipsychotics.

When a person does not comply with meds for whatever reason, they are often forced into taking their medication. This means that they are on the medication for so long (at least three months at a time) that they will experience the side effects. A combination of forceful medicating and the horrible side effects often leave a person resenting medication and they will come off it as soon as they can. The side effects were the main reason for me coming off my antipsychotic medication. While I am still on a low dose of an antidepressant (50 mg of sertraline), I have no known side effects from it. I still however, take two medications a day to cope with the long term side effects of the antipsychotics I was on. Also, I did not find any of the five antipsychotics I was on useful. I only had side effects from them, no benefits.

Other side effects from antipsychotics are listed in an old blog post of mine here. With all this information about psychiatric medication, would you take these pills? Would you put yourself through all these side effects? Yes, medications are available to help cope with the side effects, but they do not eliminate them. And yes, a person will not get every single possible side effect and some may only get a few side effects. These people are more likely to stay on medication. And there are those who find that their symptoms are worse than the side effects and are grateful for the medication. I definitely do not resent these people, to the contrary, I hope that they continue to find their medication helpful! If a person is about to start on antipsychotic medication, I would recommend that they research everything they can about the antipsychotic, and ask their doctor or psychiatrist anything they are unsure or worried about. I would also recommend looking into talking therapies, as despite the fact that talking therapy can be extremely draining and upsetting, it is usually more useful than medication and the benefits of it can be much longer lasting.

Waiting lists for talking therapies can be massive, and so medication can be useful until talking therapy starts. Plus, it can be useful for some and they may only get a few side effects. However, remember that antipsychotics have no properties that can treat psychosis or schizophrenia. Antipsychotics are just powerful sedatives. They didn't help me! I always recommend talking therapy! My opinions about medication are biased towards not taking medication. However, I stay on 50 mg of sertraline because I can see it helps me. I would like to come off it but I can see that it helps me and doesn't have side effects so I continue to take it. Antipsychotics had painful and distressing side effects and didn't help me. That's why I came off it.

So if you were on a medication that caused you pain and distress but didn't treat your illness, would you stay on it? Even if your medication helped your mental illness a little bit, would you be able to put up with these painful side effects? This is why people with schizophrenia, bipolar and other mental illnesses come off their medications. I couldn't put up with the side effects I experienced. Many others are the same. Thankfully, I received useful talking therapy and recovered that way. Had I not had the talking therapy, I would probably still be forced into taking meds and suffering from both my illness and the side effects.

Also, the next time an atrocity occurs, and the person responsible has a mental illness, please remember that mental illness does not mean violent. If a person is violent and has a mental illness, their violence is not caused by their illness, just like diabetes does not cause a person to become violent. A person can be violent and have a mental illness, not a person is violent because they have a mental illness. I've never harmed anyone apart from myself, even when I had a demanding voice screaming at me to kill people. I'm not a murderer, nor am I a bad person. I just have an illness. Being diabetic or having cancer does not make a person bad. Equally so, having schizophrenia or any other mental illness does not make a person bad. It just means that the person is unwell.

I do however, think of the family of Sally Hodkin, one victim of Nicola Edgington. Sally Hodkin was indirectly let down by the mental health care in this country and ended up being murdered by Nicola Edgington, a person who was violent but also had a mental illness. Edgington would have been violent without her mental illness, but her illness would have twisted her violent nature with her confused mind, leading her to cause this atrocity. However, without her violence, she would never have become a murderer with just her illness alone. But Sally Hodkin is the real victim here. Not Edgington nor those who will invariably be held partially responsible for her death. The support Sally's family needs should be provided for as long as it is needed. Edgington should be treated for her illness whilst she is incarcerated, whether she is locked up in prison or hospital. If she is ever released, she should be supervised extremely closely, to make sure her violent side is never allowed to hurt another person.

I hope I have answered this question properly. I also hope that my previous paragraph is written sensitively enough.


  1. I'm a psychiatric nurse & youve done a superb job explaining why. I wish you well with your recovery! It's good to hear how positive you are & I hope you inspire others x

    1. Thank you, I hope to inspire someone some day too! Thank you for your encouragement xx

  2. What you say about akathisia is spot on. My son couldn't sleep more than 10 minutes at a time and kept racing around the house night and day. No doctor took him seriously, so after 6 weeks of this, he tried to kill himself. If he is alive, it is by shear luck. I found him just in time for the ambulance to race him to A&E. The staff there were first class. What the psychiatrists did to him afterwards is another story.
    The medication actually drives some people to killing. It stops some people from thinking clearly and they become out of control. It happened to the daughter of a friend who attacked her mother with a knife.Since she has come off the meds, she is back to her rational, sensible self.

    1. Akathisia is probably the worst side effect to get from antipsychotics. Some psych staff just don't realise how painful it is or how severe it can be. If your son still suffers from akathisia, I do recommend procyclidine. Although it didn't take the akathisia away, it reduced it to the point where I could live. I agree about the medication driving some people to killing, it is not their illness that causes a person to harm, but it can be the medication! A lot of the school shootings in America have been at the hands of gunmen on psychiatric medication. I'm pretty sure the gunmen in the Columbine massacre were both on psych meds, I know one of them was. When I was first put on meds, I threw a chair across the room because of the way I felt on drugs. My illness didn't make me do that, nor am I violent. It was the meds! I'm glad I'm off antipsychotics now. I'm able to think more clearly off them and although my memory hasn't come back, my concentration has improved. Plus I don't sleep for 16 hours a day anymore!

      I hope your son is improving or recovered. I'm sorry that he had to go through all that. I hope your friend's daughter is still recovered too, with no repercussions. I always recommend talking therapy as the only side effect is usually crying. Not akathisia, drowsiness or anything else!

      Best wishes,

  3. Akathisia - What can I say. I have experienced akathisia and I found it the worst side-effect I have experienced on antipsychotics. The problem with the side-effect of akathisia is it is extremely difficult to describe how this particular side-effect makes you feel inside. There is the pacing up and down for hours and inability to sit still, however this side-effect is often confused with agitation caused by an illness so invariably the dose of the antipsychotic is increased which perversely makes the akathisia worse. I found the pacing up and down difficult to deal with but what was worse was how I felt inside and it made me suicidal in that I was pleading for people to kill me. I was fortunate that I was given a low dose of lorazepam (which was actually for agitation) but I found it helped greatly with the akathisia although it made me very sedated. But I prefered being sedated in the short term so long as my akathisia was cured. After the first dose of lorazepam I kept on asking the nurses for it everyday but they stopped giving it to me because they thought I might become addicted to it, so I was left to suffer with akathisia again. Also the psychiatrist did not recognise the fact that I was experiencing akathisia but thought I was agitated because of my illness. I was pleading the nurses to give me lorazepam so my akathisia would get better but to no avail. It took me a good few weeks for the akathisia to get better. The antipsychotics I have taken that caused the worse akathisia were amisulpride, risperidone and olanzapine. I have been on olanzapine 10 years now and I no longer experience any akathisia on it fortunately, however I am worried that being on the antipsychotic olanzapine for 10 years has accelerated the shrinkage of my brain as my memory is not very good. Before I was put on antipsychotics my memory was above average when I was tested by a clinical psychologist.

    1. I experienced similar attitudes towards akathisia, where staff thought that I was anxious about something causing me to walk all the time. And as I had previously had restless legs due to anxiety, I couldn't tell them otherwise. I'm just grateful I was introduced to procyclidine. Lorazepam didn't help me much with akathisia.

      Clopixol was the drug that gave me akathisia. The worst thing is, I was on it for just three months, over three years ago, and I still have a mild version of it today. I was on antipsychotics for three years, came off them in November 2011, but I still have problems with my memory too. That's one thing the psychiatrists don't warn about and don't even accept happens.

      I don't know if you've had talking therapy, CBT for example, but I would recommend it. I also don't know if you've tried reducing your meds, and as I don't know you, I can't really say whether or not you should come off them. I will however, say that if you choose to reduce your meds, come off them really slowly, especially as you've been on them for 10 years. I'm really glad you no longer experience akathisia though, it does cause extreme suicidal feelings, I also pleaded with someone to kill me. And the pain cannot be described. That's the worst bit. Plus, painkillers don't take the pain away either.

      Thank you for commenting, I hope that you are stable and what the psychiatrists call 'well'. It's great to hear from you.

  4. Thank you so much for your comment Katy. I am stable now, but have tried 3 times in the past 3 years to come off olanzapine and had great withdrawal problems when I had reduced my olanzapine slowly down from 10mg a day to 2.5mg. I found the withdrawal problems too difficult to deal with and very reluctantly went back on the full dose, it always takes me a few weeks to stabilise after I have been reducing my medication. The problems when trying to reduce my problems were so bad that I doubt that I will try reducing again. It felt like my brain was possessed when I was on a very low dose of olanzapine. However I may try to come off again if I experience a severe physical illness as a result of being on olanzapine. For example if I get diabetes I may try to come off but even then it may be impossible. I have heard an audio on the internet by a consultant psychiatrist in London who talks about the physical illnesses associated with antipsychotics and she said that if someone develops diabetes as a result of taking antipsychotics in about 50% of cases you no longer have diabetes if you stop the antipsychotic.

    I absolutely love your blog by the way, you have are very good at expressing yourself and it makes great reading.

    Regarding akathisia I understand that propanolol is sometimes used as well as benzodiazepines like diazepam and lorazepam in the short term.
    I am so sorry to hear that you are still experiencing a mild version of it today. I have been lucky enough not to have been given depot injections. Instead when I was in hospital I had regular blood tests to check that I was actually taking the olanzapine and not putting it under my tongue which I had done in the past with risperidone and amisulpride. Olanzapine is the only antipsychotic I can tolerate out of the others I have been given (risperidone, amisuplride and clozapine).

    1. I'm glad you are stable, and I would say that if you do have so many problems reducing, it would be best to stay on it. I know how lucky I am to be off antipsychotics and well. It would be tricky if you did develop a severe illness from olanzapine, to be honest, I wouldn't know what to recommend. I personally knew a couple of people from hospital who developed diabetes from antipsychotics but I don't know how they are now. I hope they are still doing well but there's no way for me to know sadly.

      Depot meds are usually the worst meds to have for side effects. Unfortunately, I was forced into depot medication because I initially refused clozapine. Only when the akathisia got so bad from the depot did I actually take the clozapine. It was useless for me and after six months, I came off it against my psychiatrist's advice. The antipsychotic I best tolerated was quetiapine (Seroquel) but I know many who had horrendous side effects on that. Olanzapine, Clopixol and Clozapine were all horrible for side effects. Aripiprazole (Abilify) wasn't bad but there's no way I'd ever go back on antipsychotics.

      Thank you for your encouragement, writing is one of the the only things I enjoy at the moment so I'm clinging on to it!
      Katy x

  5. Yes, I had this, too. I found Benadryl to be the most reliable drug for this, but one time when I was in the hospital, I was giving Risperdal, and I was able to sleep for the first few hours, but then I woke up at 1:30 AM with a strong sense of inner torment and restlessness! I begged the nurses to give me some Benadryl so I could go to sleep, but they refused. They also refused to call the doctor, saying they didn't want to bother them at night. So I had to suffer severe akathisia all night!

    I find that of all the antipsychotics, only Zyprexa and Invega--though I've had only a low dose of Invega--don't give me akathisia. Saphris (severe, accompanied by dyskinesia and tremors), Risperdal (severe), Abilify (moderate), and Latuda (severe, starting about a month after starting on the drug) all do.

    Luckily, my psychiatrist did recognize the akathisia and took measures to prevent it and to treat it. She prescribed me Klonopin back in June after Abilify gave me akathisia--I still have the Klonopin today. It and Benadryl are now part of my "akathisia action plan." :D

  6. I would like to come off medication. I am injected with piportil every two weeks because of schizophrenia, which I am quite violent with. Today was my injection day but i didn't get my injection. I feel quite good at the moment, but also hope this tiredness goes away. It's been eight years since my last incident.

    I'm not going back on the injection. I want to see what daytime looks like. I sleep, nvermind sixteen hours, my record is 48 hours. ----> I have music to write and record.

    I have a mathematics degree to continue. I have to paint something. I have to do some poetry. I have to read physics, man.

    I have to communicate on the internet. I have to keep sane. I have to create rules, follow orders, listen to string theory, be the best. I am the best. I love being best.

    My hands are starting to feel tired. I know I shouldn't come off medication, but i haven't been on the CTO for three years, so there's no reason why i can't go back to sulpiride. I am prescribed sulpiride, and yeah, it's brilliant. I am thirty five. There's something about introducing yourself in forums. We have such hope.

    Perhaps i will come back to this forum with a fresh mind and stories.

    I've never had akathesia.