Antidepressants
Stopping taking antidepressants
The subject of stopping (or wanting to stop) taking antidepressants came up frequently in the interviews. People had stopped taking antidepressants at different points in time, for a variety of reasons; either with a view to no longer taking an antidepressant, or to change to a different one. Sometimes people had stopped and then started taking an antidepressant again several times over the course of their lives.
While some wanted to feel in control of their treatment and saw it as a personal choice whether or not to carry on taking an antidepressant, others were careful not to make changes without guidance from their doctor. Catherine felt it was up to her. ‘I can choose to stay on it and I can also choose not to stay on it’. When Lucy was a teenager she had wanted to stop taking Prozac (fluoxetine) but her psychiatrist wanted her to continue with it. She felt doctors hadn’t listened to her. ‘I felt very much when I was young it wasn’t a discussion it was a ‘this is what you’re going to do’. Greg said he knew his body and how he felt so made the decision to stop without talking to the doctor. (See ‘Changing antidepressants’).
Caroline’s doctor told her that six months on amitriptyline was long enough and it was time for her to come off it. Although she worried that she might become unwell again without it, she took his advice. Thomas experienced unwanted side effects and felt he was getting no benefit from amitriptyline or citalopram and after a time on each chose to stop taking them. He said he ‘weighed up the pros and cons ‘I’ve always been like, if I decided to stop taking medication after six months, I would tell my GP I’m not taking them and that’s it’. When Lucy X stopped taking citalopram without telling the GP she said she had ‘felt I was being a little naughty just coming off it’. Some people said there had been occasions when they had stopped taking one almost without thinking. Colette was forgetful about taking her antidepressant ‘I just discontinued it... I’d just forget to take it one day and that one day becomes more often’. Looking back some said they realised that in the past they hadn’t given the antidepressant enough time and had stopped too soon. Steve started feeling better after a few months on citalopram and asked his doctor if he should stop but was told he should continue for at least 6 months.
When Simon first started taking an antidepressant he didn’t take it regularly and eventually stopped altogether. He didn’t like the side effects, and had mixed feelings about using medicines to cope with depression.
When Simon first started taking an antidepressant he didn’t take it regularly and eventually stopped altogether. He didn’t like the side effects, and had mixed feelings about using medicines to cope with depression.
Yes the first time I was prescribed citalopram.
So when you first started taking it can you remember that first time how it made you feel?
I remember having a lot of side effects feeling very sick some diarrhoea some clenching of the jaw, tightness in my face it was quite unpleasant. I remember, you know, being in between lectures and feeling quite uncomfortable at home as well so I had a lot of side effects there. I don’t think the first time I was prescribed them I didn’t really take them long enough for the side effects to settle.
How long a period was that first time?
I reckon I took them for about three weeks regularly, I may have had prescriptions after that but I didn’t, I didn’t take them regularly.
So if you weren’t taking them regularly then do you know what the effect of that was on you, were you feeling different on days when you didn’t take it?
I’m trying to recall if the first time I took it I really took it, the first time I don’t think I took it regularly enough for it to really get into my system to the point of view of having withdrawal symptoms which I now know.
What the reason for not taking them regularly, were you, what were you, was it because of the side effects or what?
I think partly that, partly just being forgetful which has never changed since partly I was very ambivalent to taking them, until well until the last two or three years I’ve always been very ambivalent thinking, you know, is this the right things it’s been something that I’ve not wanted to do but have done begrudgingly so I think I was ambivalent about taking it.
And what’s, and what’s that ambivalence about?
Yes there’s not liking the side effects on medication which get a lot better but they didn’t completely go away especially with the first antidepressants I was on a reluctance to being on medication I, you know, I didn’t want to be on medication for a long period of time as I the more I understood about depression the feeling that I should be relying on psychological approaches to managing the depression as well and feeling like relying on the medication instead of these other things that I’d been doing was, was in some ways it felt lazy yes.
So are you saying that you didn’t see the medication as being the answer to solve whatever the problem was behind your depression?
No, no I certainly didn’t.
So when you, you went on and off them a couple of times then were that each time a different antidepressant?
No the first time I was prescribed citalopram and then I stopped them and then I went back and had a conversation with the GP when I had a relapse with the depression and he asked how I felt towards the citalopram and I said the side effects that I’ve had with it and he then put me on venlafaxine.
If you stop the medication before 8 or 9 months is up, the symptoms of depression are more likely to come back. Current recommendations are to continue to take the antidepressant for at least six months after you start to feel better. However, if you have experienced previous episodes of depression, a two-year course may be recommended. But some people who have recurrent episodes are advised to stay on for longer in order to maintain a stable mood. Several people said they were now on a ‘maintenance dose’ which kept their mood stable, and that they anticipated continuing on that indefinitely. Stuart had tried to come off his antidepressant several times, but was now resolved to being on them ‘for life’. He said he takes it now as a preventative measure.
Clare would prefer not to take antidepressants but each time she’s come off them her depression has returned. She was afraid her doctor would not let her carry on taking it, but they agreed to reduce her dose to a ‘maintenance’ level.
Clare would prefer not to take antidepressants but each time she’s come off them her depression has returned. She was afraid her doctor would not let her carry on taking it, but they agreed to reduce her dose to a ‘maintenance’ level.
So when she suggested you know, you’re on quite a high dose I think the time’s come now to reduce it down I said yes that’s absolutely fine by me I’m happy to do that. But then it got to eventually about six or nine months later to get to the stage where it was like ‘what do you think, what do you want to do about this medication that you’re on?’ and I could feel my adrenalin kicking in, I could feel myself becoming anxious, I was and I virtually said to her I don’t know if I used the words but ‘please don’t take it away from me’. and I explained why I was saying that to her I said I have this vision that without a maintenance dose I’m going to continue to go through the rollercoaster ride of being well, being unwell, being well, being unwell. I said it’s become clear to me when I look back over the last 30 years that there is something about my being that does not cope as well as other people with life’s ups and downs but when life’s ups and downs become quite, you know, controlled I deplete my serotonin, I lose my, you know, my coping strategies much quicker than other people. and so that’s why I’m on what I now refer to as a ‘maintenance dose’ of antidepressants and as someone who doesn’t take medication I have chronic arthritis and I have to take tablets for that as well and it really sticks in my throat that every morning I have to throw two tablets down my throat. but I know why I take them… but I don’t take paracetamol, you know I don’t take pain killers I have other ways of coping with those kinds of . But this, this thing that helps me to cope with everyday life I think.
I was on 40 milligram and I’m now on 20 milligram.
And that was instead of coming off them really was it then, you lowered the dose?
Well we lowered the dose we, I agreed to lower the dose once I was feeling much better I realised that, you know, I didn’t need to be on such a high dose and we had the conversation about stopping and how did that feel because she knows how I feel about taking medication so she kind of broached the subject and I think, I don’t know if she was taken aback when I said’ no I want to keep taking it’. And I checked out with her about you know, becoming dependent on them.
And what did she tell you about that?
Well we had a conversation about it and it was around my, my kind of view that and so she took on board my, my kind of history and my, my reasoning for and I think that, that’s the good thing about the approach has been quite holistic, you know, it has been quite it’s not just focused on one thing but it’s looked at in the context of ‘me’ and I think that’s why she kind of agreed because don’t, doctors don’t just agree to a maintenance dose of a quite serious drug just on a whim. and so, but the good thing for me was I went thinking I was going to have to really bang my drum and I did bang my drum but she banged it with me if you like. Got these are terrible analogies but you know what I mean we were able to come to an agreement if you like that yes this is the way we should go with this.
And when you reduced its form 40 to 20 did you do that gradually over a period of time?
Yes.
How did you do it?
Oh how did I do that I think what we did was initially the first week I would take the 40 for six days and 20 for one and then, you know, we did it that way and then it got 40 20, 40 20, 40, 40, 40 and then, you know, in that way so it weaned me off the 40 milligram onto the 20 milligrams so we did it quite oh I can’t remember how long it was but it wasn’t like, you know, you’re on 40 now you’re on 20 it was gradual.
Simon reflected ‘I was making things worse for myself by always thinking is now the right time to come off it should I, you know, should I stop.’
Simon reflected ‘I was making things worse for myself by always thinking is now the right time to come off it should I, you know, should I stop.’
I’ve had several bouts of depression which have relapsed and I think I’ve got some degree of chronic Dysthymia in the sense that my symptoms don’t completely resolve in between bouts of depression as well and so from the point of view of the guidance I’m the sort of candidate who would, would be suited to stay on it indefinitely.
And is the, is the effect of that yes preventative rather than?
...the other thing is that I recognise that I was making things worse for myself by always thinking is now the right time to come off it should I, you know, should I stop, you know, is this doing me more, inconveniencing more than I’m benefitting and actually by taking those questions out of the equation by saying right no I’ve committed to go on this medication and stay on this medication I’m going to deliberately not use that as a strategy of something I’m going to turn on and off, does that make sense.
So is it, is it what some people would all a maintenance dose that keeps you on a certain level?
Yes, yes. I think an analogy would be like getting married okay. Before, in my experience and this is partly just, just me because emotionally I don’t feel I have kind of strong, you know, connections. I remember before I got married I always had these thoughts you know is this the right thing, is this the right person, should we be together, should we not be together... from the point of which I made a commitment I’ve not had any of those thoughts because for me being married is something that will be there forever more, I’m not allowing myself to have an out, you know, it’s through thick and thin, you know, I’ve made a decision and that’s very, very comforting, you know, because it’s down to me to make it work I haven’t got the option of divorce I haven’t got the option of breaking off the relationship because those options are put out of my mind which means making it work is, is down to other things. It’s the same with my depression by always thinking should I go off it, should I stay on it and resenting the fact that I’m on an antidepressant it makes you think about it more. By actually accepting the fact okay no, I’m choosing to stay on this, I’m choosing not to have the choice to come off it, and it means the choices that I make with regards to my mental health are often a lot easier.
And so in term of that however long you might be on it do you have any concerns about it, because some people talk to me about worries about dependency and relying too much on something that’s chemical?
Yes, yes and I’ve had conversations with colleagues you know particularly about the recovery model and dependents, we’re all dependent on different thing, dependence isn’t a bad thing, you know, we’re dependent on our partners, our spouses, on our families all sort of things that give us a sense of purpose and well-being. Dependent on a morning cup of coffee on eating food three times a day, on drinking water, there are lots of things that we need to do to carry on. Dependence isn’t a problem it’s when that dependence is interfering with other aspects of my life so yes I’m dependent on the medication but I’m also dependent on my wife and children and all of these other things so that’s not a problem to me anymore. And actually it was more of a problem resenting the fact that I was taking medication than accepting it.
Tim wanted to stop taking the antidepressant because he felt better and worried that he might be psychologically dependent on it.
Tim wanted to stop taking the antidepressant because he felt better and worried that he might be psychologically dependent on it.
I actually came off them in September so I took them for just under a year. and I can’t honestly say that I found them to be, to have a discernible impact beyond, they definitely had an impact but I think their biggest impact was psychological I felt a kind of, a nervousness around taking them initially in the sense that this is a really powerful drug I felt a very initial kind of high followed by a kind of low but I can't honestly separate out whether that was the way I was thinking and therefore feeling it or whether that was actually what was going on in a kind of chemical level.
I remember feeling quite kind of stressed out at the time that if I missed, because I was, I was sort of sustaining a working environment and I was feeling like I was making progress through the kind of therapeutic work that I was doing and I was very concerned always that if I missed the day of the pill that I would nosedive and that, you know I didn’t, I had no way of gauging what was making me feel better, you know, was it the pills, was it the psychotherapy that I was doing was it my circumstances, what was it I didn’t know and pills were at that moment part of that mix and I’d always felt quite uncomfortable by the fact that antidepressants where often prescribed and then you just continue on them for long periods of time, my sister’s been on antidepressants for almost ten years and there’s something deeply unsatisfactory about that to my mind.
So I was as I say I didn’t know if it was part of, what part of the mix was helping me, I had a sense that it was the discussions I was having through the therapy but I didn't really know so over the summer when I wasn’t working because I had the summer off I felt, I’d felt better for a fairly sustained period of time, certainly compared to how I was feeling so I decided I would come off them and I had quite a lot of trepidation and as it turned out I came off them and I was absolutely fine I really was, there was, I did a kind of over a period of a month I went from 50 milligrams to 25 so I was alternating days but the main feeling that I had was a fear that if I come off them it was a kind of psychological almost like a sort of dependency, like the only reason I’m feeling okay is because of this pill, it’s a kind of external sort of feeling. And I felt that and I was actually kind of possibility quite negative because I wasn’t taking responsibility for my own health in a way, or my own.
What just that reliance on a pill?
Yes just like I’ve now, I’ve come to a point where I’ve sort of stopped engaging with how I might feel and I’m just kind of now saying this pill will just kind of get me through the day and then I developed a fear whereby I would be like if I stop taking this pill I’m not going to, I’m going to be back where I was which is quite a disempowering thing in that, in the way that I sort of experienced it and felt it.
Stephen talked to his doctor about trying to come off the antidepressant he was taking. He tapered the dose and stopped for a while but symptoms returned and he was prescribed the same medication again a few months later.
Stephen talked to his doctor about trying to come off the antidepressant he was taking. He tapered the dose and stopped for a while but symptoms returned and he was prescribed the same medication again a few months later.
I asked if it would be okay and the doctor agreed it would be possible.
And what was it that you were thinking, did you decide that you didn’t want to be taking them anymore or did you just think maybe it would be worth a try?
I wanted to see if it was worth a try basically.
So tell me about how you managed to do that and what happened when you did it.
The strategy was basically; first of all she wanted to get it down to a lower dose to the lowest possible dose, a stage down.
And how did you stage it down did you take one every other day or something like that or half a tablet?
It was, she gave me a new prescription which was a half dose and it was a case of just go straight down to half a dose for a few weeks and then after a few weeks it was one every other day. And then after a few weeks after that, stop. So it probably took two months to actually come off them from the point that we’d discussed whether it would be possible. And it was only a trial.
So you mean you’d discussed the possibility that you might want to go back or might need to.
Might need to go back yes, it was just a trial to see if it would be possible how to do that and it was clear after two or three months that I had to go back on basically.
And was that because you, did your mood return to how it had been before you‘d been on them, was it as bad as that?
It was never as bad but I could feel it, you know, just the sensation one of the symptoms I sometimes got when I was actually... before I had an attack, you know, it took me a while to realise I’d get a, a feeling of wind floating in my stomach and if I feel that coming on and also acid reflux so it’s like a stress related illness in some ways and I could feel that coming on sometimes.
Was it related to any specific events of did it just come randomly?
Well to me it just seemed to come randomly I couldn’t sort of nail anything down. That was it, the symptoms for me, actually it was a different doctor for, because I’d moved here at this time so I had to go to a new doctor and discuss the symptoms and say this is what I’ve had in the past, I’ve been off these pills for three months now but I think I should go back on them. And so I spent another twenty minutes with a new doctor explaining the history and she put me onto the same tablets.
Flora put on weight when she took Seroxat (paroxetine)‘ ‘I didn’t recognise myself’. She felt it interfered with her metabolism.
Flora put on weight when she took Seroxat (paroxetine)‘ ‘I didn’t recognise myself’. She felt it interfered with her metabolism.
The other thing is that I had a friend who, I knew two people by then who had been on Seroxat for fifteen years well one was about eleven years the other one for fifteen years and both of them are extremely happy on it and said that they’d been told, you know, they should be on it the most of their lives there was no reason to come off it and they could manage their jobs, their life more or less with it and they both told me if they didn’t they’d be worried that it would be a slippery slope. I didn't want to be in the same position and also I’d put on a lot of weight on it and I’m not sure whether it was the medication because I was told that it didn’t particularly have that effect as far as they knew, people didn’t generally complain that that was a major side effect. and in terms of other side effects I, I didn’t really notice any so when I was on Seroxat I felt quite well and I didn’t have, especially when I sort of recovered I didn’t feel the, I would say the tension and sort of the feeling of extra pressure on my body that the Prozac had me feeling because I often had a lot of tension in my neck and in my shoulders often I would be doing lots of things I felt slightly more speeded up slightly with a manic edge, I didn't feel that was the case with Seroxat.
So in many ways I thought well it’s not doing me any harm, you know, maybe it is doing me some good but because I’d put on a lot of weight as well and I didn’t like being on medication I wanted to try coming off it and I had also been in a therapeutic group for a couple of years too so I kind of felt like I had got myself into a place where I felt I was okay and I could manage my life. And I did very, they were very cautious about it going off it very, very gradually sort of one every other day for quite a long time and then one every three days very gradually and I didn't notice any side effects coming off it and I eventually lost weight through just working at losing some weight but I sort of felt that somehow that Seroxat may be playing with my metabolism that I couldn’t lose weight very easily and it felt like and looked like that once I was off it the weight would start shifting when I was making the effort to eat less and to exercise. and so I felt much more that I was, my, back to who I recognise because when I put on a lot of weight, put on about two, two and a half stone I physically didn't recognise myself, and I had to like the clothes... I had to keep buying bigger sized clothes and I felt very unattractive and unhappy in my body, so I kind of wanted to feel better in that sense.
So I eventually went off it and that was around probably about 2007 and then I wasn’t on anything for until a large major episode which came about in 2009.
Flora saw being on medication as a sign of weakness, ‘I wanted to feel my life was balanced enough not to need to be on medication’.
Flora saw being on medication as a sign of weakness, ‘I wanted to feel my life was balanced enough not to need to be on medication’.
I asked if I could reduce it to eventually stopping. And one of the big reasons for doing that was I still had a big prejudice against being on medication, that medication can, you know, that to be permanently on something I had a block about that and I didn’t want to feel that I had to be on some form of medication and so whether that comes from the stigmas attached to medication my dad always said if you’re a diabetic you need, you know, to be on insulin, you know, if you’ve got a health problem, you know, you need to take whatever for that health problem. somehow it always felt like some kind of weakness and it meant that I had to acknowledge that there was something not right with me. And I think I just found that difficult to do and I didn't want to acknowledge that it was something endemic I kept thinking it was the set of circumstance, that set of circumstances and that I was okay now and things in my life was balanced enough not to need to be on medication.
Max wanted to stop taking his antidepressant because he didn’t know what the long term effects could be, and still experienced lows when he was on them.
Max wanted to stop taking his antidepressant because he didn’t know what the long term effects could be, and still experienced lows when he was on them.
What’s prompted you to stop taking them now?
I’ve wanted to a lot of the time.
So you still have that thing in your head about not wanting to be on drugs?
Oh yes totally. I don’t know I just kind of feel, I feel okay and I don’t know what I’m putting in my body.
Have you ever looked up, you know, done any research on what you’re taking, do you know, did you look up any information?
I look at the side effects, and my God like a lot of the time they can say, you know, it can damage your kidney and this that and the other and also I think like it’s not good what I’m putting in and I’m only doing a small bit but I’m doing it every day, like what am I doing?
So you’ve had it in mind that you’d like to stop?
I think I’ve had it in my mind before I even started.
Before you even started yes.
And the fact that it doesn’t ever stop you from dropping off the cliff which has happened a few times or, you know, getting into that really dark place whatever you want to call it.
Discontinuation symptoms can include; nausea, abdominal pain, diarrhoea, sleep disturbance, sweating, lethargy, headaches, low mood, anxiety, and irritability. With the most commonly prescribed antidepressants SSRI’s (Selective Serotonin Re-uptake Inhibitors) typically people can feel dizzy or light headed, numb or experience electric shock-like symptoms if they stop taking them abruptly. The GP or psychiatrist will usually recommend reducing or tapering the dose gradually over time. People we talked to were largely aware that it was not advisable to stop taking their medicines without seeking advice first, and most said they had ‘weaned themselves off’ or ‘tapered the dose’ to stop gradually. Sometimes though, people went ahead and stopped without taking advice and went ‘cold turkey’. In some cases this had worked out all right and there had been no effects. Charlotte’s doctor told her she could stop taking venlafaxine but did not warn her to do it gradually and she experienced similar symptoms to when she first started taking it ‘like the permanent dizziness and kind of if you moved your head to the left everything would feel as though it was a couple of seconds behind it was like kind of being on a constant roller coaster. Not feeling like your feet were actually connecting with the floor everything was sort of moving when you were walking downstairs and it was quite really disorientating’. Collette followed her doctor’s advice and came off duloxetine slowly, but still had bad discontinuation effects.
Collette had withdrawal symptoms when she stopped taking duloxetine even though she came off it gradually.
Collette had withdrawal symptoms when she stopped taking duloxetine even though she came off it gradually.
I was on the duloxetine for two years, actually stuck to this one stayed on it for two years got to the point where I was feeling a lot happier with everything and was ready to try to come off it with this with the support of the GP and we discussed it and discussed weaning off of it which wasn’t too bad, it took me a long time to wean off it, the physical side effects from withdrawal weren’t very nice.
Can you describe them?
Well my head would spin one way my stomach was spinning another it was a bit of vertigo you end up with a bit of an odd twitch because my head would spin kind of jerk out a bit just even though we were still weaning down very slowly at first even then it was still too fast and I just basically ended up curled in a heap on the sofa because I couldn’t move, to try and move would make my head spin.
Quite alarming actually.
It was, it wasn’t nice it took me, as I say, it took me months to come off of it, absolutely months to come off of it because actually it was so, so slowly in the end the last little bit was the worse.
Last reviewed June 2016.
Last updated June 2016.
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