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Mind Research - 'Coping with coming off' PDF Print E-mail

See also- Making sense of coming off psychiatric drugs (MIND). Both the research and the above booklet can be obtained at www.mind.org.uk/Information

In September 2005, MIND published research which looked into the experiences of people trying to come off psychiatric drugs. The research team set out to try and establish what happens when people do try to come off psychiatric drugs, the effects of withdrawal and what helps people to succeed. A questionnaire was produced and circulated through MIND networks, internet groups, personal contacts and was available on the MIND website. In total 248 interested individuals completed a questionnaire from which 204 were used (chosen to produce a group in which at least half had succeeded in coming off) and the results were analysed.

Also, MIND wanted to establish whether people had different experiences related to which type of drug they were attempting to come off. They needed people who had attempted to come off a single drug and were on no other psychiatric drugs at the time. They were able to gain information from 64 people on anti-depressants, 21 people on neuroleptics and 12 people on mood stabilisers.

Experience of being on psychiatric drugs  

When asked how well or badly psychiatric drugs had worked for them, nearly a fifth (18%) had found the drugs mainly helpful, with a similar proportion (21%) saying they were mainly harmful, The rest gave an even spread of opinions between these two positions.

These figures show that most people interviewed did not find the drugs they took to be straightforwardly beneficial. This sometimes puts individuals on psychiatric medications at odds with people, such as mental health workers and family members who had more faith in the drugs.

How much choice people had in taking their drugs (Individuals could give more than one answer, reflecting different experiences on different occasions)

Nearly a third of individuals (30%) had been compelled to take their medications under the Mental Health Act. Just over half (52%) had been in a situation where they felt that if they did not take their medication they would be compelled to do so. Seventy per cent had felt pressured to take them and the same proportion had felt powerless or passive about taking them. Just over half felt they had experienced free choice on at least one occasion.

These figures show how seldom the people who participated in this survey had actively agreed to take their psychiatric drugs in the first place. This is likely to affect an individual’s commitment to stay on a drug.

Why people wanted to come off their drugs (Individuals could provide one or more reasons)

Reasons given for wanting to come off drugs included: I didn’t like the adverse effects of the drug (60%), I didn’t like the idea of being on the drug long term (53%), I felt better or things were better in my life and I didn’t need them (37%), the drugs were not useful (32%), I had only expected to be on them for a limited time (19%), I was advised to come off them by a doctor (7%), other (1%).

Making the decision to try to come off

Individuals were asked how their doctor was involved in the decision to try coming off.

 


All (%)

SSRI's (%)

Mood Stabilisers (%)

Neuroleptics (%)

I decided against the advice of my doctor

12

11

25

24

I decided without telling my doctor

26

16

42

38

I decided and my doctor accepted this

28

39

8

19

It was a joint decision between me and my doctor

13

19

17

10

My doctor decided and I accepted this

9

9

0

5

Other

12

6

8

5

Number of responses in this category

204

64

12

21

The results for mood stabilisers and neuroleptics are striking. A quarter of individuals tried to come off against the advice of their doctors. Roughly 2 out of 5 did not tell their doctor. Therefore, the majority of individuals on mood stabilisers or neuroleptics tried coming off without the support of their doctor.

The researchers also highlighted that those who tried to come off without telling their doctor usually did so because they feared opposition, possibly backed up with coercion or compulsion. But some, whose drugs were prescribed by a GP, simply felt that they didn’t need to talk to their doctor first.

How quickly people tried to come off and why

Of the 204 individuals, 30% withdrew from their drugs immediately, 14% in less than one month, 32% over a period of 1 to 6 months and 21% withdrew over a period of more than 6 months. The researchers were interested in why so many individuals tried to come off all at once, when the usual advice is to withdraw gradually. Some had been told by a doctor or a friend that it was OK to come off all at once. One individual stopped because the drugs were making him suicidal. Another stopped spontaneously on New Years Eve but then monitored herself closely for signs of distress.

Some individuals who came off more slowly, wanted to obtain their drug in its lowest dose or a liquid form, so they could come off gradually, this was obviously difficult for those who came off against their doctors advice or without their doctors help. However, when doctors were involved, they were not always helpful. There were several instances of doctors denying that a drug could be obtained in a low dose or liquid form when information to the contrary was freely available in the British National Formulary. Some people ended up doing their own research and presenting their results back to their doctors.

Difficulties in coming off

40% of those interviewed did not experience any significant difficulties, however 60% did and this figure rose to 68% for individuals attempting to come off SSRI’s. The range of adverse effects included:

  • Emotional problems, such as mood swings, depression and anxiety
  • Cognitive problems, such as difficulty concentrating and memory loss
  • ‘Psychotic’ symptoms, such as hallucinations and paranoia
  • Physical problems, such as headaches, blurred vision, digestive complaints, shakes and shivers, sweating, difficulties walking and standing, joint and muscle pain, and many more
  • Sleep disturbances, such as nightmares and sleeplessness

Anxiety and sleep disturbance were the two most commonly reported adverse effects. People coming off their drugs were conscious that they may start to experience the symptoms of distress that the drugs had been suppressing. Others were also anxious about the process of coming off. The adverse effects of withdrawal could be similar, or even identical to the symptoms of distress. Disentangling these strands of distress, withdrawal and anxiety about coming off could be difficult. Some people went back on their drugs without being sure what had been happening. One person was convinced she was either depressed or ill, and was about to go back on Prozac when she found an internet site that listed exactly the symptoms she was experiencing, describing them collectively as a withdrawal syndrome. That gave her the knowledge and strength to carry on, and she was able to come off successfully. There were people who were clear they were experiencing a withdrawal syndrome, but found it so severe that they gave up trying to come off their drugs or only succeed after long struggles.

Seeking and receiving help

Individuals were asked who they had sought or received help from, and how useful they found it.

Help received from

Number of people

Very helpful (%)

Helpful (%)

Not helpful (%)

Made things worse (%)

Counsellor or psychotherapist

53

53

34

13

0

Support group

52

52

38

8

2

Complementary therapist

39

51

41

8

0

Other service user(s)

81

47

42

7

4

Family members

110

38

35

20

7

Telephone helpline

42

38

28

21

2

Friends (not service users)

100

28

51

16

5

Mental health worker (other than doctor)

76

28

33

33

7

GP

124

13

38

40

10

Psychiatrist

105

12

33

30

24

The results showed that doctors were less likely to be found helpful than any other group of people from whom help was sought or received. They were also more often thought to have made things worse. Psychiatrists were rated especially poorly by people attempting to come off neuroleptics. Out of 21, 11 sought or received help from their GP, 7 found the GP was not helpful or made things worse. Ten sought or received help from a psychiatrist, 8 said the psychiatrist was not helpful or made things worse.

Reasons individuals gave for their psychiatrist not being helpful were:

  • More likely to see the drugs as beneficial
  • Less concerned about the adverse effects
  • Less likely to understand the desire to live without them
  • More likely to doubt their ability to manage without them (especially individuals taking mood stabilisers or neuroleptics)
  • Less likely to value alternative strategies and sources of help and support

People with specialist skills who had no role in prescribing psychiatric drugs, such as counsellors, were often rated highly, as were ‘non-professionals’ such as other service users and family members as these were encouraging, supportive and understanding.

Activities, such as relaxation methods, meditation, exercise and expressing creativity were highly valued means of getting through difficult times and providing positive alternatives to medication, as were spiritual and religious beliefs and practice.

Factors that influenced success

Length of time on the drug emerged as the factor that most clearly influenced success in coming off. Four out of five people (81%) who were on their drug for less than six months succeeded in coming off. In contrast, less than half (44%) of people who were on their drug for more than five years succeeded.

The research was unable to demonstrate that the rate of withdrawal affected whether or not an individual succeeded in coming off their drugs. However, those that came off their drugs all at once were more likely to have been taking the drugs for a shorter time than those who came off slowly.For individuals coming off an SSRI anti-depressant that they’d been taking for 1-5 years, they were more likely to succeed if they took more than a month to withdraw.

However, the results demonstrated there are no firm rules about what works, everyone’s withdrawal process is different as is their susceptibility to develop withdrawal side-effects.

 


Number of people in this category

Percent completely successful

Decided against advice of doctor

24

50

Decided without telling doctor

54

54

I decided and doctor accepted

55

40

Joint decision between me and doctor

27

56

My doctor decided and I accepted

17

41

Other

23

52

Total

200

49

 Whether the doctor was involved made little difference to whether or not an individual was successful in coming off. These results challenge the assumption that, people should not attempt to come off psychiatric drugs without consulting their doctor and that doctors know better than their patients whether they can safely come off medications.

Benefits of coming off

People who succeeded in coming off and staying off their drugs were frequently enthusiastic about the benefits, which encompassed a vast range of feeling and functioning. A third of people who succeeded felt they were able to use their minds better, being more alert, better able to concentrate or improved memory. A similar number mentioned having their lives back, and feeling more alive or human. Other benefits included; taking back power and control over their lives; no longer experiencing the adverse effects of medication; or knowing they could manage without drugs.