Coping with Side Effects of Medication
Managing your schizophrenia
A key component in a successful recovery strategy is that the person living with schizophrenia should take a lead role in managing their condition and take some personal responsibility for their recovery. Nowhere is this element more important than in the area of medication. Like all other aspects of living with schizophrenia, medication must be actively managed and particularly in respect of coping with side effects. Difficulty coping with unpleasant side-effects is a common reason for people coming off their antipsychotic medication.
Unfortunately most medicines given for a serious health condition, be it mental or physical, have some sort of side effects and very often these side effects are unpleasant. Neuroleptic medication such as the antipsychotics given to combat the positive effects of psychosis are no different. However, there is a great deal that can be done about the side effects and most can be substantially improved with a good coping strategy.3
The first generation of anti-psychotics
In the early 1950’s, a French naval surgeon called Laboret experimented with a new drug called chlorpromazine to help with post-operative shock in his patients. He noted the effect the drug had in relaxing his patients and wondered if it could be used beneficially in psychiatry. Chlorpromazine (Largactil) was then tried on patients suffering from psychosis and was found to have a significant effect in reducing the positive symptoms such as delusions and particularly hallucinations. This was the first of the new drugs that were to become known as antipsychotics.5
The first generation of antipsychotics such as chlorpromazine, haloperidol and flupenthixol caused more problems with side effects than the more modern ones. The early drugs had profound sedating effects and could cause tremors in the arms and legs similar to those caused by Parkinsons disease.5 These effects were known as extra-pyrimidal symptoms by psychiatrists. Fortunately the tremors responded well to some of the anti-Parkinsons drugs available at the time but the sedating effect had no easy remedy and led to a considerable reduction in the quality of life for many sufferers. Although many have referred to this problem as “drowsiness”, it is thought by some that a more accurate description is “a dulling of the senses”.8
It was thought by many that these drugs were given specifically for their sedating effect, to keep the patient quiet and less troublesome, and consequently they earned the description of chemical cosh or chemical straight jacket. Perhaps some practitioners did make use of them for this reason but by and large they were used for their primary purpose, which was to control the positive symptoms of schizophrenia such as the delusions and hallucinations that cause real suffering to the patient.
In addition some symptoms, which were mistakenly seen to be side effects of the new antipsychotics by sufferers, were actually symptoms of the schizophrenia itself. Doctors and nurses who worked in the mental health system before the introduction of the antipsychotic drugs will testify that withdrawal and apathy were always a feature of this condition.6
Other troublesome side effects of the first generation of antipsychotic drugs were weight gain, over-sensitivity to sunlight, low blood pressure, facial twitching and restlessness.9
The modern atypical antipsychotics include clozapine, rispreridone, olanzopine, quetiapine, amisulpride, and zotepine. They are undoubtedly an improvement from the point of view of side effects but they still have side effects of their own which need to be managed. Certainly they do not have the Parkinsons tremors or facial twitching that caused so much distress in patients in the past.12
Some common side effects from modern anti-psychotics include unwanted weight gain, anxiety, sleep disruption, sexual problems in both women and men, period problems and feminising effects such as abnormal breast growth and lactation in men. These latter problems are caused by the effect that the drug has on a hormone in the blood called prolactin.
Of the new atypical antipsychotics, olanzepine and zotepine cause serious problems with weight gain whereas aripiprazole seems to give less problems in this respect.10 Weight gain is a very important problem. In serious cases patients can put on 60 to 100 pounds extra weight in a very short time. How this happens is not yet well understood. It may be linked to hormones or it may simply be that the drugs have an effect on appetite. Carrying excessive weight can lead to problems such as heart disease and diabetes later in life and the effect of weight gain on a young person’s appearance can be psychologically difficult to cope with.11
Side effects like weight gain or anxiety can be coped with much better if you have a plan for coping. Some people call this a coping strategy. For instance if weight gain is a problem then you may need to think about strictly controlling your diet and actively taking more exercise.7 If anxiety is a problem then it may be useful to discuss this with your doctor and ask for one of the modern anti–anxiety drugs such as Vallium to be prescribed.1
If you are taking a neuroleptic drug there are a number of ways that you can help to manage the side effects. Always remember that side effects are another feature of the condition that has to be managed. They should never become an excuse to stop taking your medication unless they are so serious that they are making you ill and not until you have discussed the problem with your doctor or nurse. It is vitally important to discuss any side effects with your doctor or Community Psychiatric Nurse and not to stop or reduce your medication until you have done so.1
Here are some coping skills that may help with side effects:
1. Get on to the right medication for you.
Doctors have a range of antipsychotics available to them and different drugs will work in different ways. If the side effects you are experiencing with the drug are so serious that they are making life unpleasant then discuss with your doctor the possibility of changing to a different medicine.
2. Change the dose of the antipsychotic medication
Remember the aim with medication is to always be taking the optimum dose: that is the dose that gives you the maximum beneficial effect with the fewest side effects. If the side effects are making life unpleasant and you think that you have got as good as you are going to get with the symptoms then think about asking your doctor to try reducing the dose for a trial period to find out if the side effects can be reduced without the symptoms of schizophrenia returning.
During this period you will need to monitor your symptoms closely and we suggest using one of the monitoring tools contained in our advice sheet on monitoring. Some neuroleptic drugs have withdrawal effects which can be unpleasant, so your doctor may suggest reducing the dose gradually over time rather than a sudden change. But always remember: don’t reduce your dose without the agreement of your doctor.1
3. Keep on taking the medication
It may sound paradoxical but coming off your medication without first planning it with your doctor can actually lead to an increase in side effects. People who have substantially recovered from an episode of schizophrenia may be prescribed a fairly low dose of medication called a maintenance dose for the foreseeable future to help them stay well and prevent them relapsing. It is important that you continue to take this low dose even when you are feeling fine and are symptom free. If you stop taking the maintenance dose you will risk a relapse and would then need to be treated with a much higher dose which in turn would have much worse side effects than the maintenance dose.
4. Treat the side effects of the antipsychotic
Many side effects can be successfully overcome by treating them with other drugs. For instance anxiety can be treated with anti-anxiety drugs called anxiolitics; nausea can be treated with over-the-counter (i.e. not needing a prescription) anti-sea sickness preparations; sleep disruption can be eased with one of the sedating antihistamines and if you are having problems in your sex life it may be a good move to speak to your doctor about starting on Viagra.
There is a very wide range of remedies available which can help you cope with side effects. You may find that your doctor or community psychiatric nurse may not suggest these remedies to you at first and it is very much up to you to find out as much as you can about the products that are available. As with all aspects of your recovery, thorough and patient research on the internet and at your local library will pay enormous dividends here. In addition your pharmacist may be able to help with information about over-the-counter medicines.1
Some of these treatments will only be available from your doctor on prescription, whereas others are available over-the–counter from the chemist. In any case before starting on any new medicine you should discuss your plans with your doctor who can advise on possible interactions between these medicines and your antipsychotic or antidepressant medication.
Some people also find traditional herbal remedies can help too. For instance Valerian has long been thought to help with anxiety and sleep problems and was prescribed widely by doctors during the blitz.
5. Find out as much as you can about your schizophrenia
We keep on banging on about education but it is a fact that the more you know about a problem the better you will be able to cope with it. So it is vital to use resources like your local reference library, the internet and your local Mind or Rethink centres to find out as much as you can about your condition, your medication and how to cope with the side effects.
6. Join a support group
This is one area where support groups can prove very useful. Joining a support group for people with similar problems will give you the chance to talk about side effects with other people who have also experienced them and have found their own way of coping.1
Case Study 1
Antipsychotics, prolactin and osteoporosis
Derek had been on an antipsychotic drug for several years following a prolonged and very severe period of schizophrenia. He read that the type of antipsychotic that he was taking could cause feminising effects such as abnormal breast growth in men and osteoporosis in later life. Osteoporosis is a condition that leads to a weakening of the bones and Derek was concerned about this because his mother had experienced it in later life and had suffered from a succession of broken bones.
Derek did a lot of research on the internet on this problem and asked at his local reference library who gave him the number of the National Osteoporosis Society Helpline. Then he discussed it with his doctor who agreed to carry out a blood test to find out if he was at risk. The blood test showed that Derek did have a high level of prolactin in his blood. This is the hormone that causes the feminising effects and quite understandably Derek was concerned by this result. He went back to his doctor and discussed it again. This time Derek asked for a scan of his bone density to be carried out to find out if his bone strength had suffered.
The bone density scan was a simple, painless test carried out at his local hospital using a low dose X ray machine. This test showed that Derek’s bone strength was normal for a man of his age. The test results put Derek’s mind at rest however to be on the safe side and to help
guard against any future problems Derek agreed a coping strategy with his doctor. This involved taking a Calcium and Vitamin D supplement twice a week and joining a gym where he concentrates on weight bearing exercise to maintain his bone strength. Derek finances this out of the Disability Living Allowance money that he is paid by the government. In addition the doctor measures his prolactin levels every year at the time of his annual check up.
After identifying that his side effects might cause him problems Derek was proactive in finding out more about it and then going to his doctor with some constructive ideas about how to cope better. 1
Case Study 2
Antidepressants and nausea
David was taking an antidepressant that caused him to feel very nauseous when he woke in the morning. The nausea would last for most of the morning and left him feeling very unwell indeed. David went to see his GP and discussed making a change to his medication. His doctor felt that because he had had no depression for some time that they could try reducing the dose for a trial period. This change alleviated the nausea but did not stop it completely.
Next David went to see the pharmacist at his local chemist and asked him if there were any anti-nausea medicines available over–the–counter. The pharmacist recommended an anti-nausea medicine designed for people with migraines and checked to make sure that it wouldn’t interact adversely with any of the other medicines that David was taking. David started taking this drug and found that it completely cleared up the nausea.
Again David was pro-active about managing his side-effects. He consulted with his doctor and then did his own research to find a workable solution that made his life better without stopping his medication completely. 2
A Note about Compliance
In the past when doctors treating mental health conditions were seen as very much the authority figures they used to use the term “compliance” to describe how good a patient was at taking their medication. It is now recognised that compliance tends to be a problem for all people with long-term medical conditions whether their conditions are mental or physical.
It is a myth that people with mental health conditions are not very good at taking their medication. Studies have shown that compliance with medication is no worse in mental health conditions like schizophrenia than it is in long term physical ailments such as asthma or high blood pressure. In fact demographic factors such as whether you are single or in a relationship are more likely to play a role in your compliance.4 After all we all of us forget to take our medicines sometimes.
Recognising that doctors now play an important role in educating their clients about the benefits of medication, they now tend to use the term adherence rather than compliance.
Like most types of medical treatments, antipsychotic drugs do sometimes have some unpleasant side-effects and coping with these is a key skill for the person living with schizophrenia to learn. Even with very unpleasant effects there are often ways of alleviating the distress they cause and making the medication easier to live with.
1. Author’s personal experiences.
2. Conversation with schizophrenia sufferer.
3. Cutting J and Charlish A, 1995, Schizophrenia, Understanding and Coping with the Illness, Thorsons, P130.
4. Tacchi, M and Scott J, 2005, Improving Adherence in Schizophrenia and Bi Polar Disorders, Wiley, P23.
5. Howe G, 1991, The Reality of Schizophrenia, Faber and Faber, P52.
6. Lintner B, 1996, Living with Schizophrenia, Vermillion, P66.
7. Snyder K, 2007, Me, Myself and Them, Oxford University press, P138.
8. Cutting J and Charlish A, 1995, Schizophrenia, Understanding and Coping with the Illness, Thorsons, P135.
9. Cutting J and Charlish A, 1995, Schizophrenia, Understanding and Coping with the Illness, Thorsons, P132.
10. Reveley A, 2006, Your Guide to Schizophrenia, Hodder Arnold, P79.
11. Fuller Torrey, E 2001, Surviving Schizophrenia, Quill, P230.
12. Reveley A, 2006, Your Guide to Schizophrenia, Hodder Arnold, P74.