Friday, February 20, 2009

Why Do People Stop Taking Medication?

We have already discussed the fact that violence is not a symptom of Schizophrenia. However, there are those who become so unwell that they are unable to distinguish between reality and their delusional beliefs, which are often fed by hallucinations, and these ones may resort to violence in the belief that it is necessary to protect themselves or others. This is rarer than the media would have us believe, but just like any other animal on this earth, we all have the capability of becoming violent when we feel under threat. For many suffering from severe mental illness, the greatest risk is suicide.

For the most part, once a person is relatively stable on their medication a relapse this severe is unlikely, unless they have stopped taking their medication. Indeed, the one line that seems to crop up time and time again in news reports of this kind is that the person “had stopped taking their medication”. But why? Why do people who know that they will become very unwell without medication, stop taking it?

The reasons are probably many and varied, but some of the most common reasons can be:

Once a person feels well they may wonder if they need medication anymore. Is it unreasonable to think this way? Obviously not, which is why in recent years doctors have felt it necessary to stress the importance of finishing any course of antibiotics – even if you feel well. I think it’s a common mistake that people with a variety of illnesses make, and not one to be judged.

Sometimes well meaning friends or relatives can be unhelpful in this regard, suggesting that the person doesn’t appear to have anything wrong with them and that maybe they just need to “try harder”. Such comments can create doubt in a person’s mind as to why they rely on medication. Of course, they appear well because they are on medication.

Sometimes there are still residual symptoms such as hearing voices, even with medication. Extra stress can make the voices worsen and they may tell the person to stop taking the medication. It’s easy for us to say “Just say no!” but voices can be very persistent and wear a person down over time. This is something that this experience helped me to understand.

• Another reason is that a person may simply forget to take their medication, and once a dose or two has been forgotten they can very quickly begin to lose insight and to doubt that what they are experiencing is part of an illness, leading to the person missing further doses.

There are other situations where missing a dose or two is unavoidable. Believe it or not, we had problems with medical staff recognising the importance of Mr Man not missing any doses whilst he was in hospital overnight for a minor operation. One excuse was that pharmacy wouldn’t dispense it, even though he had taken his medication in with him. Another excuse was that he was asleep when they were doing their ward rounds. So wake him up! They wouldn’t let other patients miss antibiotics or insulin would they? Thankfully he didn’t miss two doses in a row, as he was taking Clozaril at the time and as mentioned previously, he would have been unable to resume his usual dose if he had. But for some, this disruption in medication can result in an individual losing insight and not resuming their usual medication regime once they return home.

• You know what? Sometimes people just get sick of taking medication, and who wouldn’t? Sometimes people with Schizophrenia have to take an unbelievable amount of medication with unimaginable side effects. No other person suffering from any other kind of illness would be expected to put up with such side effects, with the exception of those suffering from life threatening illnesses such as Cancer. Do you think I’m exaggerating?

Some of the worst side effects that Mr Man has suffered from include:

* Vomiting. Not just once or twice at the beginning of treatment, but every morning, for months, and often so sudden that he didn’t even get out of bed in time.

* Diarrhoea. Again, severe and sudden. Not able to get to the toilet in time and sometimes not even out of bed in time.

* Drooling, drowsiness, and slurred speech are probably the side effects that give people the impression that people with mental illness are mentally impaired in some way and unable to function normally. These are effects of medication though, and as with Stroke victims the person is still well aware of what is going on around them. Drooling at night can be excessive and result in saturated pillows. Strangely, although suffering from drooling, the person can also suffer from a dry mouth at the same time – not just excessive thirst, but a throat so dry that one cannot swallow their food properly. I’ve lost count of the amount of times I actually thought Mr Man would choke to death during dinner, or he began vomiting because of food stuck in his throat.

* Bed wetting. At one time Mr Man was wetting the bed up to four times a night due to his medication, but then he was in bed more than usual as well – sleeping up to 20 hours a day/night. Medication can make a person excessively tired and sleepy, and make them unable to think clearly when they are awake.

* Jerky movements and twitching. This has resulted in Mr Man dropping cups and plates, falling down stairs, and stumbling into the path of moving traffic. One time we were in a restaurant and his arm jerked suddenly whilst he was cutting his food and his plate went flying across the room!

* Shaking. Being unable to even write with a pen.

* Nightmares every night, so real and so frightening that they caused him to shout in his sleep and wake sobbing.

* The final straw for Mr Man was the excessive weight gain – the kind that cannot be controlled through diet and exercise. Anti-psychotic medications can interfere with the body’s metabolism and cause weight gain and high cholesterol, which of course increases the person’s risk of diabetes and heart disease.

* These medications can also cause infertility in men (I don’t know about women) and I recall Seaneen reporting hair loss due to one of her medications.

The list goes on and on. How would you feel about taking these medications? Can you imagine suffering all of these side effects at the same time? How many other illnesses require medication that makes the patient feel so ill and in fact, in the long term reduces their life expectancy?

But why stop taking medication without discussing other options with the doctor first?

In Mr Mans case, taking Clozaril appeared to be the most affective drug for him – it’s only when he started taking Clozaril that he began to gain insight into his illness. He felt that if he tried to explain that he didn’t want to take it anymore he would be criticised for his decision and forced to take it anyway. I suppose that is no surprise – that is what past experiences had taught him. Thankfully Mr Man has a very understanding and supportive psychiatrist now, who encourages Mr Man to take an active and informed role in the choice of treatments he is given, but this isn’t the case for everyone and many fear a hospital admission if they refuse to comply.

So what is the answer?

Clearly patients need to be properly supported if they are struggling to cope with a medication regime, whether that is because the voices are telling them not to take it, or simply because they need help to remember which tablets to take at which time. Some patients find it beneficial to have their drugs administered through an injection, so that they don't have to worry about taking tablets each day.

It may not be possible to eliminate all side effects, but those prescribing medication can take steps to help reduce them. Each medication has a therapeutic level – beyond that dose the medication won’t become more effective but side effects will increase. The doctor needs to find that level, which can be difficult because it’s likely to be different in each person. They don’t have to grope completely in the dark though – for Clozaril at least, the doctor can determine if the therapeutic level has been reached through a blood test. (I don’t know if this is the case for other medications – maybe someone in the know could help me out with this?)

Even without the benefit of knowing the therapeutic dose for each medication, a doctor can help to reduce the side effects by combining medications. Of course a good knowledge of which medications work well together is important. How does this help? Each medication works differently and has different side effects, but hopefully produces the same result; therefore, lower doses of two different anti-psychotic medications will hopefully work just as well but with fewer side effects than a high dose of one drug.

Other therapies can also be used in conjunction with medication, which again would hopefully reduce the need for higher doses. CBT seems to be working quite well for Mr Man at the moment, and the value of taking part in hobbies that he enjoys has been immeasurable. It took time to reach a level of health where these other interventions were of use to Mr Man, but it was worth persisting.

In conclusion, I would say that it is a mistake to demonise patients who stop taking their medication - rather, I would like to know what measures were set in place to encourage or help them to continue.


Seratonin said...

A good post and so relevant to recent events with my Hubby. Over the past year his Sulpiride dose has gone from 800mg to 1200mg and in now 1600mg.He feels very sleepy particularly when at home, which has not gone unnoticed by the kids. He saw his CPN last week after we'd discussed the need perhaps to review his dosage, but this coincided with his experiencing a lot of paranoia, mainly at work. So a consequence was his Shrink sitting in at appointment with CPN. Thus the meds were upped.In the past Hubby has forgotten to take his meds or reduced them of jis own accord, only to start feeling ill again. He also twitches, has put on a fair amount of weight in the 15 or so years he has been on Sulpiride and it appears now his blood sugar levels are needing some control as he veers towards Diabetes. Previous meds including Haloperidol caused horrific side effects, such as his throat constricting, his tongue going into spasm so that he couldn't talk or swallow and would end up walking like a chimpanzee if he didn't take the meds to counteract the side effects. In the early days of his illness I remember him being in hospital and he was put on a drug trial there, he ended up with an enlarged liver. Thus he was taken off the trial.Would it surprise you to know that there is no record in his Psychiatric notes held by the hospital of this drug trial !! (we found this out a few years after he was taken off the trial quite by chance talking to another Psychiatrist.)
I was relieved to see you mention that irrespective of taking meds, some people do still experience Schizophrenic symptoms, as my Hubby does too. Although he says he is aware of them at times just being in the background.
Anyway thanks again for an imformative post.
Sis xxx

Mr Mans Wife said...

"Would it surprise you to know that there is no record in his Psychiatric notes held by the hospital of this drug trial!!"

Seratonin, I don't think anything would surprise me anymore! But it is disgraceful. Sounds a bit dodgy to me - are you sure it was legal??

This is a post I wrote months ago and I have been meaning to type it up for some time! I think side effects and ceasing medication for various reasons are very common problems for people suffering from Schizophrenia and other severe mental illnesses. It amazes me that even some doctors think "you have your meds now, you should be fine!" - unfortunately it doesn't work like that!

The sleepiness is unreal isn't it? Mr Man has started snoring mid-sentence on several occasions!

Ah, the chimpanzee walk - I refer to it as the honey monster walk! I've correctly guessed that someone is a Schizophrenia sufferer before just by their walk!

I'm not sure what the average therapeutic dose is for Sulpiride - it's been a long time since Mr Man was on that. I'm aware that in some areas doctors just won't prescribe more than one anti-psychotic med to a patient at a time. I hope the doctors can find some sort of balance for your hubby soon. Thanks for your comment.

Barbara K. said...

This post should be in included clinical textbooks.

Mr Mans Wife said...

Thank you Barbara! Maybe Andrew Walsh will read these comments and take the hint!

Robert said...

Thanks for this post. It has given me a new perspective on patients who stop taking their medication. I shall not be so judgemental in future...

Anonymous said...


Hint taken!

It is really important for this kind of experience to be as widely shared as possible. These problems are really common & it is important to get clinical staff to think about how they will help people in these circumstances.

I already try to direct people over to your blog for this kind of reason. But,in addition, if ever anyone wants a space on our blog to repeat anything like this then you are really welcome to do so.


Mr Mans Wife said...

Thanks Robert. I'm glad I could offer some insight, although I can't imagine you being judgemental anyway.

Thank you Andy! I don't usually do guest posts, but if you feel one of my posts is relevant and important enough then please feel free to reproduce it on your blog with a link.

Anonymous said...

Hi - me again

RE your post - As long as you are ok with that then I will do something along those lines


Mr Mans Wife said...

Hi Andy, yeah that's fine. As long as you state that it's written by me and provide a link, I am happy for you to do this with any post that you please. I dare say that your blog will attract a different audience to my own, and the more awareness we bloggers can raise collectively the better as far as I'm concerned. I just don't like doing guest posts because I don't like the added responsibility of replying to comments on other blogs as well as my own.

It would also be interesting if you added your own views on the subject.

Thanks Andy.

Anonymous said...


You asked about my views on this - so here goes. I am a bit wary of trying to sum this up in a comment though as there is a lot to say & a lot that will get missed out, but anyway..

I think I know enough about Schizophrenia to be absolutely sure that I don't know what it actually is. I am pretty suspicious of anyone who does express certainty about this.

That said, it seems clear to me that something is happening to people & for the overwhelming majority, that "something" is pretty unpleasant.

Knowing what I do about medication, I would want a really good reason to take it or to allow any of my family to do so. I am sure that MH Services often don't go into a lot of detail re effects/ side effects as people wouldn't take the stuff.

Having said all of that, I have seen lots of people who are able to lead a "better" life because of this medication & for whom the alternative would be a lot of suffering.

The more I write this, the more I think I want to develop this into a longer reply so .. I will get around to it

Sorry for the long comment!


Dani said...

Hi. This was a very informative and interesting post to read. Thank you very much. Dani

Spaffy said...

Very interesting discussion.
I think more people should be aware and informed of these side effects....

I look forward to hearing more from Andy!

Mr Mans Wife said...

Andy, I've heard a lot of mental health professionals (online) express the same view as your own, that they're not absolutely sure what Schizophrenia is. Maybe us uneducated folk over simplify the criteria, whereas you obviously know from experience that cases can be complex. In saying that, when Mr Man was in hospital the first time, it was the staff who were rigidly sticking to the text book and saying Mr Man couldn't possibly have Schizophrenia because he was too old!

It's true, side effects are rarely mentioned, but patients soon find out for themselves what they are! I agree, these things are so poisonous that they shouldn't be handed out without good cause. I think Mr Man fits into that category of now living a better life due to medication, but it was a long time coming.

Don't worry about the long comment! (You should see some of Mr Ian's!) I meant for you to share your views in a blog post though (not everyone reads the comments) if you were to reproduce my post on your blog. But thanks for your comment Andy.

Thank you Dani and Spaffy. Me too Spaffy!

Stacy said...

As a bad patient myself, I will tell you why people stop. We convince ourselves that we are well.

Mr Mans Wife said...

I don't think that makes you a bad patient Stacy. Thank you for stopping by and leaving a comment.

Tasks At Hand said...

We find that Clozaril works best for our clients as well. I understand all the side effects and how it takes so long for someone to find the right combination. The weight gain is probably the toughest for our people and the sleepiness is also difficult but because they're a part of our program, there are people around them who not only understand what they're going through but help them through the tough times. I really understand all you go through and appreciate the insight you have.

Anonymous said...

I don't know where to turn and I cry everyday trying to find help for my brother. You see he was in prison for 18 yrs and when he came out he was on Risperidone. Everything was fine until he stopped taking it. I asked why and his reasons were the weight gain (about 80pds) loss of sexual function and he said his thoughts were not his own. He was not long before seeing a jail cell after stopping his meds. They kept in jail just long enough that his disability was cut off and now he is about to loose his apt. He thinks he is God. He has not had a meal in so long now and I am over a grand in debt trying to cloth and look after him, financially I can do it anymore and don't know what to do. He is now anorexic, if I were to guess I would say he weighs about 120 and he is six feet tall. This weight loss took just 3mths. When he was arrested it was because he was yelling in his apt and so I gather people called because they were afraid. They jailed him for over 2 mths trying to get a bed in the mental ward for an assessment. Well apparently the time ran out for the legal limit of holding him and that was three days after they got him in the hospital and the just released him. Everyone in the family has turned their back on him because they are afraid of him.
I don't want to see him end up on the street but what can I do to prevent it. I can't make him take the meds not can I write the letter to disability to get him reinstated. The local mental health association is of no help as I have called the worker that we saw when he first got out. So I am asking here on this forum if anyone has any suggestions.

Anonymous said...

My Son got ill when he was 17 years old he suddenly couldn't sleep i didn't notice it he never complaint to me until one morning he woke me up it was about 9am it was on a saturday and he told me his face was different on the mirror he was real scared,i was confused and real worry i acted calm and gave him sleeping pill from my wife i laid down with him and hugged him until he went to sleep,his dr. recommended 7 days with sleeping pills but as soon as he stop taking them he couldn't sleep at all,after many nights and days of suffering i took him to the right Dr.said he had major depression gave him Seroquel from 200 ml to100 mill at night and 5 ml of lexoprol in the morning and he was like a zombie for 3 years although he said he was feeling okay ??? on the fourth year he stopped taking lexoprol and felt better with only seroquel after six months went to only 50 ml of seroquel and i was amazed how good he look and he lost all the weight started exercising and was the happiest i ever saw him since he was ill, that is when he stopped taking his medicine and tried natural herbs he started to get sick again but he was trying to stay on herbs and finally he couldn't take it anymore and he went back to seroquel but to our surprise it didn't work anymore and made him feel real sick,he couldn't take the medicine anymore one year and a half and about five different medicines the last one being latuda and he still feels real bad and is merely surviving the awful side effects specially on the evenings when the side effects get stronger he takes 20 ml latuda at night,So if your medicine is helping you to feel good DON'T STOP TAKING IT!!

Anonymous said...

My brother is schizophrenic and he is on medication. He seems to be doing well and feels much better about himself. However, I am noticing that he is starting to talk to himself again and is starting to hear voices again while he is on his medicine. why is this happening? how important is it for him to take the medicine at the same time everyday?