Coming off drugs

The National Health Service in Shropshire, England has an interesting document on their website giving advice on getting off meds. I’ve seen this document before elsewhere but this time it struck me as quite helpful so I’ve copied it here. Thanks to a reader for alerting me to it again!

I do not endorse everything in this document but think its very good as a starting point in general.

Coming off medication

Guy Holmes and Marese Hudson

Guy Holmes is a clinical psychologist who has helped many people to successfully come off medication; he was one of the editors of This is Madness and This is Madness Too.

Marese Hudson is a service survivor and a founder member of Shelton Hospital’s Patients’ Council who 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 at some point usually give consideration to coming off their drugs, especially when they have come through the worst of a crisis. Mental health professionals have often been reluctant (or have lacked the expertise) to assist people in this process, and have used various strategies to persuade people to carry on taking their drugs.

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 United States 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, and 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”.

Campbell, Cobb and Darton (1998) found that 63% of people who had tried to stop taking their psychiatric medication had experienced problems. People can experience withdrawal or rebound effects, the more common of which include: flu-like symptoms; nausea; sweating; chills; shakes; noise in the ears; dizziness; muscle weakness; spasms; headaches; appetite change; diarrhoea; night sweats; strange and painful sensations (e.g. like electric shocks, ‘weird’ sensations in the head).

Some withdrawal effects mirror psychiatric symptoms e.g. mania; hallucinations; agoraphobia; depression; voice hearing; nightmares; panic; extreme tension; insomnia; fatigue; nightmares; impulsivity and suicidal thoughts; tearfulness/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 (Bregginv and Cohen, 1999). 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, as the body (having adjusted to the daily intake of that drug) reacts to its absence.

Other problems with coming off medication include the resurfacing of the original problems and the loss of the benefits of the medication. Although some mental health professionals might call this ‘relapse resulting from an untreated illness’, people describe benefits from medication even when they do not conceptualise their problems as medical in origin. David Healy (e.g. Healy, 1997) has said that the main effects of psychiatric drugs are the creation of a sense of indifference and a general emotional dampening effect. 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 crisis. Mental health professionals, family and friends can escalate that fear, as they can be 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.

Until recently, there has been little information on withdrawal reactions and how to go through the withdrawal process. In our experience, many people have abruptly stopped their medication, suffered significant withdrawal reactions which have been interpreted as ‘relapse’, and been put back on medication with increased fear on all sides of the person coming off their medication again.

Top Tips for coming off psychiatric medication.

These are based on the first author’s experiences of helping people to come off their medication, and the second author’s experience of successfully coming off medication.

1. Be sure that you want to 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 as follows:

A)Good things/advantages in coming off meds: e.g. 1)”I won’t feel zombied out” 2)”I’ll feel more confident if my weight returns to normal”3)”I can drive” 4)”It will confirm I’m better”

B)Bad things/disadvantages in coming off meds: 1)”I might have another breakdown” 2)”My husband might get uptight/get on at me”

C) Good things/advantages in staying on meds: 1)”I don’t risk the withdrawal effects” 2)”I’m quite stable”

D)Bad things/disadvantages of staying on meds: 1)”side effects – lethargy, weight gain” 2)”sex life is affected” 3)”I don’t like doing what others think is best for me rather than what I want”

Do this individually then talk through the list with someone you trust. Only put down things that you feel are important to you (not what you ‘ought’ to put down), and write things in your own language – in the way the thoughts come to you. Once the lists are complete you may become aware of the mixed feelings you have to being on drugs, but also be in a position to make a judgement about whether overall you want to stay on or come off your drugs. Where does the balance lie? Do the advantages of coming off medication outweigh the disadvantages? The lists may also identify areas you can start to tackle before starting the withdrawal process (see below).

2. Get as much support as you can e.g. from family, friends, your doctor, other professionals. Talk over your reasons for coming off your medication with people who are prepared to listen and support you. But be realistic – you may not get the support of these people. Many people have successfully come off their psychiatric medication against the advice of mental health professionals (see Crepaz-Keay, 1999). Others suggest that a skeptical and disillusioned attitude to psychiatry can be helpful regarding the withdrawal process (Lehmann, 2001). 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. Useful books and articles are listed below; they can be obtained or ordered from your local library.

5. Make sure you have alternatives to medication as ways of coping with things e.g. ‘Working with voices: victim to victor’ (Coleman and Smith, 1997). Have strategies to help with withdrawal reactions, the increase in emotional sensations and possible resurfacing of problems you experienced before taking medication. Sometimes you 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, start the process at a time of relative stability in your life, and be prepared to not do much if you have severe withdrawal reactions.

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

8. Plan it well and go slowly.

9. Withdraw from one drug at a time if you are on more than one drug; leave withdrawing from ‘side-effects medication’ (e.g. procycledine) and minor tranquillizers (e.g. benzodiazepines) to 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% 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% reduction 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 (e.g. 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 severe reactions to reducing your dose be prepared to raise the dose again temporarily in order to (i) check that your reaction is a withdrawal/rebound effect (ii) reduce the dose by a smaller amount at the next step.

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 lived lives free of psychiatric services.

Breggin, P. & Cohen, D. (1999) Your Drug May Be Your Problem, Revised Edition: How and Why to Stop Taking Psychiatric Medications  (Perseus).
Campbell, P. Cobb, A. & Darton, K. (1998) Psychiatric Drugs: Users experiences and Current Policy and Practice (MIND).
Coleman, R. & Smith, M. (1997) Working with Voices: Victim to Victor (Handsell).
Crepaz-Keay, D.(1999) Drugs. In C. Newnes, G. Holmes & C. Dunn. This is Madness: A Critical Look at Psychiatry and the Future of Mental Health Services (PCCS Books).
Healy, D. (1997) Psychiatric Drugs Explained (Mosby).
Lehmann, P. (2001) Coming off Neuroleptics. In C. Newnes, G. Holmes & C. Dunn. This is MadnessToo: Critical Perspectives on Mental Health Services. (PCCS Books).

15 thoughts on “Coming off drugs

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  1. If you were on 5 meds and cold-turkeyed off of them that is extremely dangerous.

    Five days is not long enough to know whether you will have bad withdrawal effects or not.

    I wish you the best, but I can’t support how you’re choosing to take care of yourself.

  2. I liked your article, i have come off meds, its now 5 days. i didnt think of withdrawal effects when i stopped taking them, perhaps i would have done things differently had i known about them, its too late now im off and im staying off, come hell or high water. i refuse to live a half life any longer. i had no interest in life or motivation to do anything. all i did was sit around drinking tea and smoking cigarettes. even with the meds (5 different types) i was still having mood swings and feeling paranoid, so i believe i am no worse off without them.
    at least i’ll have a sense of who i really am and be able to take control of events instead of events controlling me. i refuse to lose another day to apathy, my house was falling down and i didnt care. i didnt care about anything. now im in control, me, the self i have lost all contact with. i choose not to be stigmatised and drugged and labelled. i am free.

  3. This is great, Gianna! Thanks for posting it. I wish this info had been available to me when I stopped my meds a few years ago. I knew nothing of withdrawal symptoms, and thought I was headed into another episode.


  4. This is a very helpful site. I have been on Lamictal for two years for epilepsy, and am now coming off. I’ve been taking 400mg and am coming down by 25mg every two weeks. Even so, I have a miserable few days after each step down, and it isn’t getting easier as I go lower. I have night sweats, chills, shakes, creepy-crawly skin sensations, feel out of my body and unable to concentrate, elation and depression swings, which are a mild part of my my psychological makeup, but not like this, insomnia, flu like symptoms, itching, irritability and anxiety. It’s bad for a few days of each two week step and then eases up. It will take eight months to get all the way off. A few years ago I spent a year on Remeron for depression, hated feeling like I was living inside a condom–a thin, numbing layer between me and the world–and took myself off. It took four months and I was told to use other drugs to “bridge” the process. One of them was Prozac, which made me very sick, and meant I had to go through withdrawing from that, too–which, since it had only been two weeks I did fast and painfully.
    It makes me so angry that withdrawal symptoms are not part of “informed consent”—not that the full range of side effects are either, but they don’t even mention withdrawal symptoms other than seizures for any of the psychiatric drugs that are also used for epilepsy.
    One thing I’ve found to help is strongly tranquilizing herbal teas and extracts. I drink a blend made by Lhassa Karnak company that has hops, passionflower, scullcap and a lot of other things and smoothes the shakes and emotional upheavals some. I also take concentrated Valerian caps (Gaia makes Valerian “phytocaps” that seem much stronger than plain powdered herb.) Glad to be part of this community with you all. Aurora

  5. this is a very helpful article, thank you…

    it makes a bipolar person realize there’s hope of being drug free..

    however, i tried tapering off my risperdal intake and eventually, fully stopping and was met by relapse, losing my job and some friends…

    now im back on this drug and i must say, life’s pretty good…

    it’s also right to maintain good health through constant social interaction with people that matter to you , proper diet, work and life balance, meditation, etc… on top of medication….

    this way, side effects of your meds will be minimized or even go un noticed by you… in my case, i get rashes from time to time and find myself craving for food..

    thus, i keep myself active and intellectually stimulated as well by self-help and devotional books…

    life’s pretty good …

  6. the info adds to the bank of stuff i now know.My journey of withdrawal began in late 2003.I am an expert at insomnia but the good news is that i’m mostly except for the “bees knees” amt of .3ml per month i’m off.the tardives dyskinesia which was serious worked itself out of my system with time too(21 months of some serious tremoring.MY RX schiz so things abit different forBPD.

    Hunter’s story scary as is mine-people not willing to see you as you…ultimate mind-game the denial of you,you don’t exist.survival,now I’m saved psychologically to myself,I’ve never been better!Watch out for those who will experiment with the person as if they don’t matter.I say matter!


  7. Hey gianna, thanks for putting that up. I’ve got what i think could be a pretty cautionary story about stopping the meds cold turkey, might keep others from making the same mistakes? It’s long but may be helpful…

    Was doing ok for most of my life, went to a good college and grad school, was an investment banker and started a couple internet companies. Was suffering from some depression though, so went for treatment and was diagnosed as bipolar and prescribed meds, Prozac then Paxil and Xanax, which didn’t seem to help, so was prescribed more, and the dosages got really high. On them felt numb and “sleep walking” through life for about 5 years. Tried tapering off them for a long time but didn’t have much success, was so tired of how I felt on them and sexual side effects were tough to deal with. So, not really having done enough research on it, I stopped them cold turkey. Was pretty bad, a few days later got in a fight and broke things off with the woman I was going to marry, attempted suicide a week later. In the hospital I was diagnosed as BPD (even “mild” schizophrenia at one point), back on the meds and others (22 in various combinations before all was said and done). It was more than two years of dysphoric depressions, mania, suicidal ideation, more and worse attempts, at one point given a long course of ECT treatments during a hospitalization. I’ve had severe memory loss, huge chunks of my life wiped out, and some cognitive impairment, which from what I’ve read is not that unusual from the ECT and can also come from long term Benzo use and withdrawal. Basically much of the more than two years following the initial withdrawal and huge chunks of my life before wiped out.

    Better now that time has passed and was detoxed off the meds, but still sometimes have trouble organizing thoughts, with things like simple addition and spelling, and just overall have felt like a different person.

    Really the fault lies with me for stopping the meds all at once, and even agreeing to be on them and at such high doses. It certainly wasn’t dealing with my issues on a real level. I suppose there are plenty of people who have been helped by large med doses and ECT, and I believe the doctors who prescribe and administer them well intentioned, but I think there’s a lot more unbiased study needed on the dangers and both short term and long term effects of each. The recent hearings on covered up studies documenting the dramatic increases in suicidality from SSRIs, the forced admission about Sudden Discontinuation Sydrome, the horror stories about benzo addiction and withdrawal that are out there, and the studies on memory loss and cognitive impairment from Benzos and ECT are all pretty alarming. Again, I don’t want to write things off on the meds or ECT, I know for me, I had real issues to deal with and I feel therapy has been helpful. And it’s difficult to tell what was the meds or the ECT and what’s you especially while it’s happening, and especially if you’ve been on them for a long time, but I know for certain that I never attempted suicide before meds, that I felt drugged out and zombie-like on them, the side effects, were pretty awful, and that following being a on large doses and the ECT have lost some real basic cognitive function and I have acted in ways radically different than my life before them, alternating for a long time between manias and desperate suicidal depressions and just wasn’t “myself” for a long time. Such a radical change that some friends told me the other day that there were many times they thought they had “lost” me. When I look at what I lost, how I’ve been after vs. before the meds and ECT, and what I’ve put the people I love through, I really want to caution folks to do their research on the meds and just realize that it’s a very inexact science, and whatever you do, don’t stop them cold turkey.

  8. This is a great article. The tips are excellent. Thank you for spreading the news.

    So many people try to go cold turkey, have major problems, then lose the hope of ever getting off meds.

    Jim S

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