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.