Extract from Issue 123 Sep/Oct 2003 'Coming off medication?

If you are stopping taking medication it is advisable to reduce the dose gradually, as it is difficult to predict who will have problems withdrawing. It is worth getting as much information and support as you can, and involving your doctor wherever possible.

Guy Holmes and Marese Hudson

Guy Holmes is a clinical psychologist who has helped many people to come off medication successfully. Marese Hudson has first hand experience of coming off medication.

Some people's recovery from breakdown and mental health problems can be helped by psychiatric medication. But for others, it can be a hindrance. Even people who find medication helpful usually at some point give consideration to coming off their drugs.

Mental health professionals have frequently been reluctant (or have lacked the expertise) to assist people in this process. The benefits of drugs have often been over-sold, with the risks, especially of long-term use, going unmentioned. In our view this is ethically and legally wrong. In the USA, many people have successfully sued mental health professionals and authorities for not warning them of the (sometimes irreversible) adverse effects of psychiatric drugs and associated problems in coming off medication. This country has started to follow suit. There are virtually no designated specialist services to help people come off prescription drugs at a time when we are being swamped with messages of there being a 'pill for every ill''.

Sixty-three per cent of people who try to stop taking psychiatric medication experience problems. People can suffer withdrawal or rebound effects as the body, having adjusted to the daily intake of the drug, reacts to its absence. These include: nausea, sweating, chills, shakes, noise in the ears, dizziness, muscle weakness, spasms, headaches, appetite change, diarrhoea, night sweats, strange and painful sensations (eg ‘electric shocks’ or 'weird sensations in the head’).

Some withdrawal effects mirror psychiatric symptoms: for example, mania, hallucinations, agoraphobia, depression, voice-hearing, nightmares, panic, extreme tension, insomnia, fatigue, nightmares, impulsivity and suicidal thoughts, tearfulness and heightened emotional reactions. These effects can occur within hours, days or weeks of stopping or reducing medication, and may last for hours, weeks, months, or occasionally be permanent. It is impossible to predict in advance who might suffer these effects and who might have no adverse reactions to coming off their medication - or what the severity of these reactions might be. However, the longer someone has been taking a drug the more likely the person is to suffer withdrawal reactions.

Other problems with coming off medication include resurfacing of the original problems and the loss of the benefits of the medication. David Healy has said that, rather than treating an illness or correcting an imbalance, psychiatric drugs have a general dampening effect and create a sense of indifference. The losing of this, especially if a person is living in a psychologically and socially toxic environment, can be very difficult.

People also fear becoming as distressed or disturbed as they were at the height of a crisis. Mental health professionals, family and friends can escalate that fear if they are worried about how a person might be (and the knock-on effects on their relationship with that person) if they are not 'on' their medication. Prediction of breakdown and threat of compulsion are widely reported by people when they try to have conversations about coming off their medication. In our experience, many people have abruptly stopped their medication, suffered significant withdrawal reactions which have been interpreted as 'relapse', and have been put back on medication with increased fear on all sides of the person coming off their medication again.

The guidelines which follow highlight some of the issues anyone coming off medication needs to consider.

Tips for coming off psychiatric medication

1. Be sure that you want to try and come off your medication. Think through the pros and cons of coming off and staying on your drugs. One of the best ways to do this is to 'brainstorm' four lists (see below). Only write down things that you feel are important to you (not what you ‘ought’ to put down). Once the lists are complete, you may be more aware of the mixed feelings you have about being on drugs and be in a position to make a judgement about whether, overall, you want to stay on or come off your drugs. Do the advantages of coming off medication outweigh the disadvantages? Where does the balance lie? The lists may also identify areas you can start to tackle before starting the withdrawal process (see below). 

   Making the decision to stop or carry on taking medication
   Pros of coming off eg "I won't feel zombied out'' "I'll feel more confident if my weight returns to normal'' "I can drive'' "It will confirm I'm better"	Cons of coming off eg "I might have another breakdown'' "My husband might get uptight/get on at me"
   Pros of staying on eg "I don't risk the withdrawal effects'' "I'm quite stable"	Cons of staying on eg "Side effects - lethargy, weight gain'' "Sex life is affected'' "I don't like doing what others think is best for me"

2. Get as much support as you can from family, friends, and professionals. Talk over your reasons for coming off your medication with people you trust. But be realistic - you may not get the support of everyone. Many people have successfully come off their psychiatric medication against the advice of mental health professionals. It has been suggested that a sceptical and disillusioned attitude to psychiatry can be helpful regarding the withdrawal process. But if possible, find a doctor or pharmacist who has successfully helped people come off their medication and will help you in doing this. Workers from substance misuse organisations often have experience of helping people come off a wide variety of illicit and prescription drugs, have come off drugs themselves, and may be able to offer help, advice or set up a support group specifically for this purpose. 
   

3. Talk to people who have gone through the process of coming off their medication. Learn what you can from their experience, although your experience will be unique. If possible, join or set up a 'coming off medication' group. From a group, you might get knowledge and expertise, support and encouragement, positive competitiveness, and a reality check that you are not 'going mad'.
   

4. Read up as much as possible on your drugs, the common withdrawal effects from your drugs, and about how to maximise your chances of doing it successfully.
   

5. Make sure you have alternatives to medication as ways of coping with things, and have strategies to help with withdrawal reactions, the increase in emotional sensations and possible resurfacing of problems you experienced before taking medication. During the withdrawal process you sometimes might need to just 'sit things out'. But relaxation techniques and doing physically and psychologically soothing things can help.
   

6. Try to get in as good physical health as possible before starting to come off your drugs. If possible, begin the process at a time of relative stability in your life, and be prepared not to do much if you have severe withdrawal reactions.

7. View coming off your medication as a journey (it could be a rollercoaster ride!).

8. Plan it well and go slowly.
   

9. Withdraw from one drug at a time if you are on more than one drug, and leave withdrawing from 'side-effects medication' (eg procyclidine) until last.
   

10. The longer you have been on a drug, the longer you should take in coming off it. Think in terms of months, rather than weeks, if you have been on a drug for over a year.
    

11. Take a step-by step approach - taper your dosage. Reducing your dosage by 50 per cent is a big step. People do succeed by taking such big steps (or by stopping their drugs altogether in one go), but by doing so you are increasing the risks of having withdrawal reactions to the drugs. Medically trained practitioners more frequently recommend a 10 per cent reduction for each step, with at least a week to ten days between each reduction (longer if you have been taking a drug for more than a year, or if you have severe reactions to reducing your dose). Ask your doctor and pharmacist to supply your drugs in doses that allow you to take incremental steps in your dosage (eg a mixture of 2mg, 5mg, 10mg tablets). For some drugs (especially the minor tranquillisers), the steps need to be smaller than others, and the final step might need to be broken down into very small reductions before you finally stop.
    

12. If you have a severe reaction to reducing your dose, do not automatically interpret this as ‘relapse’ or give up on the process. Be prepared to raise the dose temporarily by an incremental step in order to (i) check that your reaction is a withdrawal/rebound effect (ii) reduce the dose by a smaller amount next time.
    

13. Be flexible - be prepared to change and adapt your plans. You might want to take 'breathers' in between steps, or put things temporarily on hold if things become stressful in your life. It might take time to find a plan that suits you. Everybody's reactions to coming off medication are different, and there are no set rules.

14. Remember that thousands of people have come off their medication and subsequently lived lives free of psychiatric services.
    

If you are stopping taking medication it is advisable to reduce the dose gradually, as it is difficult to predict who will have problems withdrawing. It is worth getting as much information and support as you can, and involving your doctor wherever possible.

1. P. Campbell, A. Cobb and K. Darton (1998) Psychiatric drugs: users experiences and current policy and practice, London: Mind.

2. P. Breggin and D. Cohen (1999) Your drug may be your problem: how and why to stop taking psychiatric medications, Perseus.

3. D. Healy (1997) Psychiatric drugs explained, Mosby.

4. D. Crepaz-Keay (1999) ‘Drugs’ in C. Newnes, G. Holmes and C. Dunn, This is madness: a critical look at psychiatry and the future of mental health services, PCCS Books.

5. P. Lehmann (2001) ‘Coming off neuroleptics’ in C. Newnes, G. Holmes and C. Dunn, This is madness too: critical perspectives on mental health services, PCCS Books.