Sonia

Age at interview: 31

Age at diagnosis: 17

Brief Outline:

Sonia has experienced depression since she was 17. As a teenager she had problems with an eating disorder and began self -harming. She was admitted to hospital after having taken an overdose of paracetamol when she was in her 20’s. Since that time she has had several admissions to hospital and has been referred to community mental health services at various times. She has tried numerous different antidepressants, but has found it difficult to find the right one for her. Some have lost their effectiveness after using them for a time, and sometimes she has experienced side effects that she has found intolerable.

Background:

Sonia is single and works as an administrator for a healthcare provider. Ethnic Background: British/Indian

More about me...

Sonia’s first experience of depression was around the age of 17. At the time she had been eating irregularly and her mother took her to see the GP who diagnosed depression and prescribed Seroxat (paroxetine). She took it for a few months, but after that time stopped taking it because she experienced panic attacks, and didn’t like the way it made her feel. For the next few years she had intermittent short episodes of depression and was prescribed various different antidepressants.
 
In 2003 Sonia experienced a more prolonged and serious episode of depression and was admitted to hospital. Since then she has been hospitalised several times. Over time she has tried mirtazapine, lofepramine, sertraline and venlafaxine. She used sertraline for several years but finds that after a time antidepressants become less effective for her. Sonia sees a variety of different health professionals including a CPN, her GP, Psychiatrist and private therapist. There have been times when Sonia has found it difficult to work together with health professionals responsible for her care as she feels that they have sometimes imposed changes onto her rather than fully involving her in decision making about her treatment, but on the whole she feels she has been well supported. However there have sometimes been disagreements about her care, for example whether she needed to take antidepressant or antipsychotics, and sometimes she has been prescribed a combination. She has also been prescribed sleeping tablets and anti anxiety medicines.
 
Although Sonia has had some therapeutic interventions during her stays in hospital, she has found it difficult to get a referral for long-term therapy as there are long waiting lists. She pays to see a therapist privately but says it can be difficult to get ‘joined up’ care, as the health professionals and the private therapist have no means of liaising with each other.
Sonia finds it difficult to come to terms with needing take antidepressants on a permanent basis, and has felt frustrated at how difficult it can be to find one that maintains its effectiveness. There have been times when she has tried to stop taking them to see if she could manage without them, but it hasn’t worked out.
 
‘I did feel like a failure when I realised I had to go back on them. And after that I kind of felt… I came to a bit of a realisation that actually you know, I will have to live on them... and that’s absolutely fine. And I go through phases... sometimes I think yeah, it’s fine that I have to live on these, and then sometimes it really annoys me’
 
Sonia currently takes fluoxetine and mirtazapine together. She also takes an antipsychotic medication to help with impulsive thoughts and to minimise her tendency to self-harm.

Sonia thought her doctor should have told her about some aspects of her medicine that she had found out from reading the patient information leaflet.

What they didn’t tell me, and I found out by reading the kind of, you know, patient note information leaflets that you get, was that it makes you sugar crave in a really, really big way . So I didn’t get on very well with that drug because I had a history, well have a history of eating problems so giving a drug that makes you sugar crave to someone who has eating issues was probably not the best idea in the world.
 
I’ve read, you get your patient information leaflet and you do read ‘oh you shouldn’t mix it with these medications’ and certainly there have been some things that I’ve been on and I can’t remember which ones, that I’ve read them and I’ve thought well I’m also on that and that says I shouldn’t be on both at the same time and you kind of think well someone should be telling me that I shouldn’t be finding that out by myself but generally they don’t tell you anything.

Sonia had mixed results with lofepramine. She liked it because it reduced her appetite.

In 2003 I got very, very depressed and was prescribed lofepramine, if I remember right lofepramine by my GP, again wasn’t really told anything about it and I didn’t, I wasn’t really interested I just wanted something to make me feel better, I was kind of, you know, I didn’t really care what it was. It seemed to work quite well and then it seemed to stop working.
 
I convinced him to let me try lofepramine again because it had worked in the past and so he said he would. He was quite, he was very good, he gave me information about the drug, he said to me, he kind of left it up to me in terms of, he said this is the dosage you can go up to, try it on this dosage, if it’s not working you can increase it yourself up to a certain point but do kind of come back and he was very insistent that I call him if I needed help or, you know, and have regular appointments with him to kind of check up on things.
 
Unfortunately it didn’t work and that Christmas I was admitted to hospital again.
 
Lofepramine I loved, sorry going back to the Tricyclic, I love lofepramine and the reason I wanted to go back on it the second time was a ridiculously vain reason but I remembered that it made me, it just, it stopped my appetite, I had absolutely no desire to eat at all and for me I wanted that back, I wanted, you know, I wanted to lose weight I wanted to not eat so I was just like yes give me a drug that makes me not want to eat and I’ll be more than happy.

Sonia was prescribed mirtazapine to help her sleep, because the fluoxetine she was on caused insomnia. ‘I’m taking one antidepressant to deal with the effects of another’.

So she put me on fluoxetine which I still take now.
 
So I was prescribed 20 milligrams when I started them last year and I stayed on that for about two months and then she upped it to 40 milligrams and that seemed to work for quite a while until about May time this year when again I started to get very depressed again, so she’s now increased that to 60 milligrams and also added on mirtazapine. One of the side effects of fluoxetine, which I was never told that I read about on the patient leaflet is, insomnia. And as she increased the dose of the fluoxetine the insomnia got worse which is why she had to add the mirtazapine because the mirtazapine is a sedative. So that helps me sleep, so I’m taking an antidepressant to deal with the effects of an antidepressant which I don’t really like doing but you kind of get to the point where you have to trust them and trust that they know what they’re doing. So that’s what I currently take alongside something else, quetiapine, which again is an antipsychotic which she uses to minimise my impulsive behaviour in terms of self-harm and to keep me calm, and that’s kind of where we are now.

Sonia felt some benefits from taking mirtazapine but gained weight whilst she was taking it.

So I was quite happy because I was sleeping what they didn’t tell me, and I found out by reading the kind of, you know, patient note information leaflets that you get, was that it makes you sugar crave in a really, really big way . So I didn’t, I didn’t get on very well with that drug because I had a history, well have a history of eating problems so giving a drug that makes you sugar crave to someone who has eating issues was probably not the best idea in the world.
 
And can you, do you counteract that or do you, you know, just sort of fight against it or?
 
I try to kind of when I was first put on it I was very aware that that was, I knew having been on it in the past I knew that was going to happen. So I was kind of like right I’ll have, you know, if I want sugar I’m going to have fruit and I’ll have yoghurt and I’ll have healthy sugars and I lasted for about three weeks and then I was just like I need chocolate. I don’t, it’s a constant battle with me not just necessarily just with this drug but I used to think that I would rather be rather be dead than fat. And somehow somewhere along the way that changed and I my sanity took over as being more important and so I think you have to kind of balance.
 
Yes it’s that balancing the side effects against the benefits I suppose.
 
Yeah it is, yeah.

Sonia reflected ‘They’re giving you a drug to counteract suicidal feelings but it can also cause them.

I was told, it was something that I read because I always suffered from migraines always since I was a teenager, and I’ve noticed that once I started taking sertraline I was getting them very, very often. But no one had told me anything so I went and looked it up and realised and you know you read up oh okay actually migraines and headaches are a side effect of this drug. So I ended up taking another drug to counteract that side effect and so it’s a kind of, that was one of the side effects of sertraline. With fluoxetine again I mentioned earlier the insomnia which again I’m taking another drug to counteract that.
 
Also you also have to remember that antidepressants, certainly the SSRI’s, can cause suicidal feelings, so while they’re giving you a drug to counteract suicidal feelings that it can also cause them. And it’s, it is a side effect that does kind of go away with time so again it’s one of these things they kind of say to you ‘I know it’s awful I know it’s shit but please can you kind of just sit with it for a couple of weeks until the side effects go away’.

Sonia has experienced side effects from antipsychotic medicines but she feels they help prevent her from wanting to self-harm.

What about the antipsychotics how do they make you feel, do they have a different effect?
 
Yeah, they… they kind of, they make everything a bit fuzzy. You get used to it and I think it’s only when you come off them that you realise kind of that you’ve been, been living with the volume turned down a bit if that makes sense. But they do help, they, I think the ones that I’ve been on prior to the quetiapine which I think now haven’t really done much for me and I’ve always stopped taking them because I didn’t like them, didn’t like the way they made me feel. With the quetiapine she’s been.
 
Is that the risperidone?
 
Risperidone and chlorpromazine and Clopixol.
 
So when you say you didn’t like the way they made you feel was that that whole fuzzy?
 
Yeah and very, they do have a tendency to make your muscles spasm and I didn’t like that.
 
Was that in your legs mainly?
 
Yes and I really didn’t like it I couldn’t, it just, yeah I just didn’t like it at all.
 
And has it continued after you?
 
No with the quetiapine I’m quite lucky, that it hasn’t happened with this one. But with this one she’s kind of been quite persistent and she’s changed the dosages around, she’s changed the times that I take them.
 
So how, you said you take three times a day?
 
Yeah, so originally when I first started taking last year she had me on 25 milligrams once a day, soon ramped that up to 25 milligrams twice a day, then it became 50 milligrams twice a day, then she changed it so I was taking them twice, you know once in the morning, once at lunch time and once at night then she tried changing it to do it three times and were back to twice a day.
 
It’s a lot to remember isn’t it?
 
Yeah and so now, as of Monday, I’m now taking then morning, lunchtime, 5pm and then double dose at night.
 
Would you notice if you missed a dose?
 
Yes I think so.
 
What would happen?
 
I think that the agitation for me and also the desire to hurt myself, as much as it pains me to admit that she is right, it does help with the harm, the harm minimisation, it actually does. And I think it doesn’t, one of the reasons I don’t like and haven’t had liked antipsychotics in the past is because I’m very aware that it’s not that I don’t want to self-harm it’s that the drugs are making me not want to self-harm.
 
Right.
 
And for me that’s always been an issue it’s kind of like in my head I still want to self-harm but a drug is kind of stopping me from doing that and I didn’t, I’ve never liked that before.

When Sonia’s doctor wanted her to take lithium she said ‘there’s no chance in hell that I’m ever taking that’ because of the risks in overdose ‘having a drug in the house that I know could kill me’ would be a mistake’.

I think, was it last year or the year before when I was told she wasn’t going to change by antidepressants unless I changed to lithium I think perhaps five years ago I would have just gone yes just give it to me and I didn’t I said just ‘Do you know what, no, there’s no chance in hell that I’m ever taking that’.
 
What was your objection to that had you looked that up or?
 
Lithium is a very dangerous on overdose and I tried to stay away from drugs for medications that are dangerous on overdose because as much as I know there are times that I will want to try and kill myself I try and limit the risks and I try to, sorry, eliminate the risks so having the drug in the house, a supplying the drug in the house that I know could kill me, I wasn’t really prepared to do that.

Sonia’s doctor kept a close eye on her and only prescribed a week’s medication at a time. She found it reassuring that the doctor wanted to keep a close eye on her.

My GP then actually was brilliant in terms of, because I was only being given a weekly, I was on weekly prescriptions because my psychiatrist, because obviously she knew I was suicidal and because I’d tried to kill myself she didn’t trust me with, which is quite common they don’t often trust you with more than…
 
Had that being an overdose type of thing?
 
Yeah, they, they often don’t trust you with more than a week’s worth of medication and my GP was brilliant because she would leave out repeat prescriptions but she would never let a month go by without seeing me, so on the last one she would always leave a little note saying please make an appointment for your next prescription is due which was great because it was just someone to kind of keep in touch with and kind of someone saying ‘are you okay’, you know, ‘is everything going okay?’. Because obviously your psychiatrist is there but you don’t necessarily see them all that often. 

Sonia points out that each time the dose or medicine is changed you can experience new side effects. Doctors try to encourage you to stick with it, but it can be difficult to do that.

That’s another thing that is really difficult is that, you know, certainly for me in the last three, since June so the last three months, my medication’s been changed three times and you have to just kind of sit out the side effects and wait for them to calm down. You can’t go back to your consultant and say, you know, after two days ‘Oh do you know what this isn’t working,’ even kind of when I, when she added mirtazapine in June, I was suicidal when she prescribed it, I felt it got worse in the week immediately after I started taking the mirtazapine and I spoke to the mental health team and said I don’t know if it’s a coincidence but I don’t think it is because my moods have deteriorated so rapidly and they kind of insist that you stick with it and you don’t really know which to do because you’re kind of thinking well you know what you’re talking about, you are the experts, you are the doctors but equally you’re thinking, I know what I’m feeling.
 
I’m fairly confident I will be on medication for… a very long time if not the rest of my life. I don’t like it, I don’t really accept it, I kind of half do and half don’t, I am scared that I will have to keep changing because, you know 13 years on God knows how many different medications, I’m scared that’s going to keep happening. 

Sonia pays to have therapy privately. It can feel like her therapist is the only one ‘on my side’. She feels it would be more helpful if the therapist and other health professionals responsible for her care worked together, rather than separately.

I had a private therapist there.
 
Right and was that helpful?
 
It was, it was incredibly helpful it was, it’s a bit of a funny one, I liked her from the moment I met her, she just, you know when you meet someone and you just think I like you, I trust you I know I can.
 
It’s very important if you’re going to open up to somebody that you feel that way about them?
 
And in retrospect I think it’s quite possible that I kind of got a bit attached to her and it was incredibly difficult when that ended for me but yeah it was, it was, she was the only person at the time because I didn’t get along with my consultant psychiatrist and she was the only person that I felt I could be honest with, she was the only person I felt that was on my side.
 
Where you able to talk to her about your concerns about your antidepressants and the medication that you were on?
 
Yes I did but she didn’t really have, I mean subsequently you’ve got a team, there’s always a team, you’ve got the consultant and when you’re an inpatient you’ve got the nurses, you’ve got your therapist, you’ve got your CPN who is always kept involved even when you’re admitted to hospital, you’ve got GP’s and she, the therapist certainly in that situation was not, didn’t really have much of a say in, in kind of how my treatment was going. You know, they kind of looked at her to do right well you do therapy and that’s all you do, you don’t need to be involved in anything else and they weren’t, you know, I think they were very much aware that she was the only one I trusted but they didn’t seem to care.
 
So would it be more helpful if things where a bit more joined up?
 
Very much so yeah, and I think that continues, it continues to be an issue certainly even now. I have a private therapist who I see, I see him privately for several reasons, mainly because I have never been able to get talking therapy on the NHS despite being on the waiting list for God knows how long and because if you get talking therapy on the NHS you have to go during work hours which I can’t, can’t do. So I started seeing him because he works during the evenings and I kind of, I found him on the on the internet I found him on the BACP website, met him, liked him, thought yes I can work with this guy and at the time it was fine because I wasn’t under the mental health team because I was quite well but since kind of, in the last kind of two years I’ve been back under the mental health team and it’s incredibly difficult because they don’t like the fact that they have no awareness of what he’s doing with me. I think they feel very left out, very in the dark and equally he feels very frustrated because he feels that he, they’re stopping him from doing the work that he wants to do with me because of certain things that they’re doing, he doesn’t agree with the medication I’m on, the fact that they want to, for me to have therapy with them rather than him.

Sonia has taken antidepressants for a few years and has tried several different ones. At first she didn’t ask many questions but these days she uses to internet to help her find out more about her medicines.

I’m not as naive as I was so I generally ask more questions when I’m prescribed medication because I think back years ago I kind of just accepted what I was given and didn’t really ask any questions but now I know to kind of do research on the internet and to you know, which websites are good to look at and which ones are not too good.

Sonia’s therapist sometimes found out information about her medicines for her by asking other health professionals that she knew, and sometimes she asked for information from family friends who are pharmacists.

I think it doesn’t always occur to you that it’s the medication that causing that. I think certainly for me, sometimes it has to be pointed out and again I’m lucky my therapist is brilliant and he will often sit there and say ‘Right what have they done to your medication, how are you feeling, okay this is why you’re feeling it?’ and even to the point where he will go and he’ll ask, because he works for a different mental health team, he’ll go and ask his team, you know one of the doctors on his team and say ‘Right I’ve got a patient this is what’s going on can you, you know, tell me does this sound right?’ So I’m very, very lucky in the fact, you know, that I’ve got him and I’ve got a brilliant aunt and uncle who are both pharmacists as well, so I can call them and go ‘Does this sound right to you?’

Sonia had mixed feelings about using antidepressants ‘There’s still part of me that feels a failure because I can’t manage my life without chemicals’.

I think for me it’s that realisation that I can’t do it by myself anymore.
 
But there is a quite a drive that you want to?
 
Yeah I do, there’s still a part of me that feels like a failure for not being able to manage my life without chemicals. And I came to a realisation, it must have been probably, I don’t know about five years ago maybe, where yeah, no it was probably around 2009 actually because I tried, 2009 I’d been on the sertraline for about four years by that point in time, sorry three years, and I’d been doing so well and I’d been doing really, really well and I wanted to see if I could live without antidepressants. And I actually did it properly, I actually spoke to my GP, we came up with a plan we said fine we’re going to withdraw from a 100, 75, try 75 for two months, if that’s working cut it down to 50, if that works give it up for 25, if that works take 25 every other day. We had it all planned out and I kind of started and reduced to 75 and managed on that for a couple of months and then started to withdraw to 50 and realised it was, it wasn’t going to work.
 
So how, how did you realise that what was it you noticed?
 
I started to get agitated, I started to get very, I guess it was the symptoms of depression coming back, I get very irritable, certainly it’s one thing I notice a lot because working in a busy office I get very agitated by noise, by people talking and by the fact that people have the audacity to breath, which is not really, not really helpful. And I think I kind of started to notice those signs, notice those signs and very quickly, I’d said to myself when I started to come off them, I said to myself ‘you’re not a failure if you can’t do this and everyone else said that to me but I’d never, I didn’t believe it and I did feel like a failure when kind of I realised I had to go back on them. And then after that I kind of felt, I came to a bit of realisation that actually you know what I will have to live on them and that’s absolutely fine. And I think I go through phases sometimes I think yeah its fine that I have to live on these and then sometimes it really annoys me.

Side effects are different for everyone. Sonia says you have to weigh up the pros and cons for yourself. An antidepressant isn’t a ‘cure’ but can help alleviate depression enough to enable you to make changes in your life.

I guess I would advise anyone to find out what the side effects are because some of them aren’t variable and it, it is very different for everyone, whilst someone might get, you know, horrendous side effects from fluoxetine another person might not get any at all and you have to kind of think, you have to really think hard is it going to be worth it because if you’re incredibly, you know, if you’re at the lowest point you can possibly be the side effects are probably worth it, if you’re mildly depressed they’re probably not going to be. I would probably always suggest talking to your pharmacist as well because your GP’s busy, they’re busy and you know what they’re not; they don’t know everything about every drug and a pharmacist kind of does. I think they’re a really underused and underrated kind of tool out there actually pharmacists.
 
So do you think it’s about people finding the right one for them?
 
Absolutely yeah I think… I think doctors tend, GP’s tend to have their favourites there’s always a drug of the, drug of the day or drug of the month, drug of the year always gets prescribed a lot more than anything else, and that’s fine but I think also what I would say to people is don’t be afraid to go back and say you know what this isn’t working because I think a lot of people are and also ask the question, what is it supposed to be doing, you know how is it supposed to be making me feel, is it supposed to be making me feel my normal self or is it supposed to be making me feel kind of half way there or, you know, because I think there is this expectation that it’s just going to make you feel better and actually that’s not really what they do. They kind of get you to a point where you need to make changes.