Antidepressants

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.

From reading the, reading online, you know, we’ve got the internet it’s just, there’s so many reviews of everything and you can read negative reviews and, you know. I went for citalopram because it was more of a positive kind of review that I had, it was saying this was amazing and it was more mainly for mild depression that I’d seen, that drug.
 
So how much research did you do on the internet?
 
I did, yes I did loads.
 
Where did you look?
 
You know just, just go to forums, antidepressants things, just searching citalopram, searching fluoxetine, just seeing alternatives to antidepressants.
 
And what kind of information interests you is it the kind of clinical stuff or where you more interested in finding out about peoples experiences?
 
A mixture of both, I think you know, I think I want to read it the clinical, you know, the clinical make-up of the drug, what it’s doing, what it actually does, you know, SSRIs, receptors, all those things that you read about, what they‘re actually doing to you physically. But yes I think more people; the biggest sway is people’s experience.
 
Do you think it’s, how easy is it to find reliable information would you say?
 
I found it okay, I found it okay I think, you know, I top and tail everything I read of like ones that are extremely positive and extremely negative, I kind of ignore both of those because you can easily focus on the negative and it’s just, you wouldn’t do anything or you can focus on the positive and your just being blind to everything.
 
So you were doing it, you were making comparisons across different sites?
 
Yeah, yeah I’ll do, I did about four or five different sites and kind of just went to like the comments box of forums and was seeing how, how, what it was like to take them initially and what it’s like to get off them, they were my two main things. Seeing what the side effects were during, throughout and also the coming off them was a big one I looked at.
 
So you were looking at citalopram and making comparisons about the kind of reactions that you’d had to the Prozac?
 
Well no I was looking at citalopram and seeing how. Yeah I was, in a way I was and also looking at individual ones. I got the citalopram because he recommended that one, before I took I went and did my research and had then in front of me and I was looking at the research and thinking okay is this the right one. And seeing basically I did citalopram versus fluoxetine or whatever and seeing the difference and most people had said they preferred citalopram but that seemed to be the more mild depressant, for people with mild depression. Where there were loads of people that didn’t like citalopram as well and they were like pro fluoxetine.

How much do you use the internet to find out about health related information like about antidepressants or?
 
I use it quite a lot but I find it quite annoying because the NHS style official websites have almost just the blurb that’s in the packet on them whereas if you go onto something like, you know, ‘Yahoo answers’ then there’s loads more kind of real time information but obviously you don’t know whether they’re real people or if they’re making it up. So I think certainly a website like this that’s got, you know, genuine certified information on it is much better and I wish there were more websites like that.
 
So is it quite helpful to find out how other people deal with different aspects?
 
Well I think so because just to know that there’s other people going through it first of all is a massive bonus knowing you’re not the only person in the world because that’s often how you feel that it’s you and everyone else. so to know that actually it’s everyone else and a couple of other people are much better, it certainly helps me. And just to hear other people, it’s the language that they use, you know, they don’t say it is unadvisable to do this, they say oh I felt really sick when I did that and it just makes it a bit more.
 
It makes it a bit more real.
 
It does, it does and I think, you know, you’re much more likely to understand if you’ve been, this hasn’t happened to me but if you’ve been throwing up each morning because of the side effects and you read that someone else has been throwing up each morning because of the side effects then you know what’s going on then whereas if you read in a packet ‘it might cause you to vomit’, I don’t know it’s just something about it.

Did the doctor give you some information about it?
 
Yes she gave me some information but I also did personally did like some of my own.
 
And how did you go about doing that?
 
It was like Google searched it. I mean there is lots of stuff, I mean it’s a bit like, like hit and miss you know there’s lots of stuff online about people talking about anti-depressants and some of its a bit like, you know, I mean as most people I don’t go on the internet and trust everything that I read you know... the NHS website has the information and that’s where I got a lot of it from. But also there were bits where people were talking about their own personal experiences and when I researched Prozac there seemed to be a lot of people who had the same feelings as me. And there was the citalopram, there were people who had sickness and stuff but there was no, there didn’t seem to be so much of this feeling that it was something terrible and awful.
 
Was that what you were most interested to find out when you, when you were thinking about taking the citalopram, about how other people reacted to it?
 
Yes before, for like for me with the citalopram if I’d had the two weeks sickness or just the beginning period of sickness again like I would have, I would have been fine with that. The main thing for me was I didn’t want the numbness and that, the sort of like you feel like it kind of creeps up on you and then it’s there and then it takes a bit of time to go I just so didn’t want that and so it wasn’t, it was important to me to sort of hear what other people felt like.
 
And see how you could function on a daily basis?
 
Yes and there just didn’t seem to be that same like consensus that it was a problem so. you know there are always going to be people who react badly to something and, you know, that’s part of it but yes it seemed, people seemed to be much more positive about it.

So when you start on the new one did you do some looking up to find out more about that one?
 
Yeah, yeah I have done for everything I’ve taken. Just so, the leaflets you get with them are useful but also there’s some, a couple of websites where they do some crowd sourcing on side-effects and get, you know, people’s own experiences of them. And I’m, I’m quite wary about anecdotal evidence generally but there’s a couple of sort of pretty good aggregators which say here are all the side-effects I’ll tell you about, here are some things that people have had happen to them that might be related to.
 
Yeah so they, somebody will start a site or a forum or something and say look I’m looking for people’s experiences of X and, you know, presumably as much as you’ve had that kind of response with this, there are lots of people who have got opinions about this stuff and want to.
 
Yes
 
And, and the whole point is that, you know, so you know, so say someone’s prescribed something and they got this weird side effect that wasn’t really on the labels and the doctor said yes it could have been that but they have no way of telling. They give that information to the person who’s aggregating it all and that gets put on the list of things, so if you know, if find yourself taking that drug and this weird thing has happened to you and oh somebody else had that.

Get as much information from as many different sources as possible not just to accept the first thing that they were given by their GP and if they were given something by their GP to then look that up and on the websites they’ve got mental health and medical websites so to go to one of those make sure it’s connected with a mental health service or hospital so that you know it’s, you’ll get all the details of side effects and other details if you want to find out more about the drug itself. But also I would suggest that they go on line and maybe go on go to health forums and there’s also sort of some depression kind of forums to talk to people if they don’t know anybody but where they can contact the people to find out what their experiences are, just in terms of some support and also might make contact with people who might make helpful suggestions or be able to share some of their views. Also locally if they have a MIND service or a similar mental health charity that they can access MIND is particularly good because they are generally very well resourced but it depends what part of the region you’re in but they have a fantastic website they have also in major cities and towns Wellbeing Centres where you can actually ring up locally or just drop in to speak to somebody confidentially or to find out about other kind of support that might be in the community just counselling or groups or any kind of thing. I’d say that anybody who’s experiencing depression or anxiety or some kind of mental health problem then try and get as much advice and support as you can and for everybody that’s different.

I’m interested in other people’s experiences but only if they meet a certain bar of articulacy which is very unfair to a lot of people who’ve got intricate experience that they’re sharing in the best way that they can but I, you know, I tend more to sort of read books about people’s experiences than to go on the internet.
 
And so have you also read kind of books?
 
Yeah I’ve read quite a lot of stuff around this, I’ve read, you know, the sort of sad girl classics, the girl interrupted, bell jar and that type of stuff and also a couple of the sort of older men with depression, there’s Darkness Visible, a William Styron book, there’s a couple of others there. And I don’t know if you know the Noonday Demon but that’s incredibly, it’s huge, it’s a thousand page turner and its half experience and half kind of social and historical cultural interpretations of depression.
 
I mean and how do they, do they make you feel, how does it make you feel reading those kinds of accounts?
 
It’s interesting, some of its.
 
Does it help you to understand yourself more or does it make it?
 
Yeah, well no some of it’s very much, especially when I first started discovering these books when I was in my mid-teens, it was like how are other people, you know, not only have they had this experience but they’ve also written books, this is really inspiring. And also sometimes you think, you think oh God that person was so much worse than I am, what am I complaining about, you know, kind of the tendency to compare yourself to others is always there. And it took me a sort of a long time to properly appreciate that everyone’s experience is different and just because mine isn’t quite like that it’s still valid, that kind of sense of validation took a long time to come.

So would you say generally speaking I mean the interactions you’ve had with your GP’s has it been a kind of a joint decision making process would you say, how’s that been?
 
It’s changed over the years it’s in the early years it was entirely driven by the GP I just didn’t know what was, what was going on and then it became more joint but it’s only ever a ten minute conversation, you know, so it’s not an in depth thing. And now I’ve found that I probably know more than the average GP in terms of not the drugs generally but in terms of the effect they’re likely to have on me. So now I find with my current GP, you know, it’s much more of he’ll say ‘Well what do you think?’ ‘What do you want to do?’ So you know it’s now much more me being in control.
 
Do you normally go in with an idea of what you think you want to do already?
 
Yes, yes that’s right yes.
 
And over the years where have you built up all this knowledge from, I mean you’ve mentioned a few things?
 
Lot of reading so, on the shelf upstairs I’ve got a whole shelf full of books on depression ranging from self-help books through to books that are more sort of medically orientated. a lot of just talking to people professionals, and the internet. I don’t read... it’s just funny how you, you sort of acquire the knowledge over the years in the early days because understanding it was important for me in terms of dealing with it I read a lot of books but then you soon get to the point where one book is saying the same as the next and you sort of, you’re not learning anything new from reading a new book. So it's now, you know, I tend to keep up to date with sort of developments through I listen to some pod casts when I’m cycling and that kind of thing on mental health which I find very helpful.
 
So you’ve got quite a wide knowledge of mental health issues?
 
Yes.
 
And in terms of the type, in different drugs and the types of antidepressants, how have you found out that information?
 
Again through the, through books mainly so and the internet but the trouble with the internet is that it’s so fraught, the people who tend to post if you look on forums are the people who have had bad side effects. It’s the usual thing of, you know, the people who post reviews of shops are the ones who, you know had bad service and whatever they bought was broken and so I found that you just, I’ve read some of the forums and it’s so depressing to read and they’re full of people criticising different drugs and so on. So I tend not to look at forums very much.

I was enormously encouraged that he didn’t just say here’s some tablets go away and take them, think about it. He gave me a couple of websites to look at to just looking at possible side effects and how it might work and that sort of thing. so that gave me enormous encouragement with him as a doctor I have to say that he was actually thinking about me and what was best for me. and then I came home and talked to my wife about it and it was about November, October or November and I remember thinking the doctor said the first month on this treatment can be pretty grim or not, you know it can highlight some of the worst aspects of, of the depression, it can be a problem. and I remember thinking Christmas was coming up and I was feeling awful and I didn’t want to mess up Christmas and so I thought if I start now with the tablets, if I’m lucky I’ll get the month or six weeks of not feeling so good and they might actually start to kick in the benefit for Christmas. And I just thought with the children around I came to the conclusion I didn’t want to waste any time and I’d spent enough time feeling, you know, unwell and if they could provide, if there was a treatment that could help then I would go on it.
 
Did you feel like the decisions you took were made jointly between you and your GP?
 
Oh absolutely and I think that’s really important because also I felt that if I’m going to go on the treatment that may affect my mind in some way, you know, I wanted to, I wanted to be able to trust the doctor and know that, you know, I was an individual to them and that If I come in and say I just feel terrible, you know, help - don’t dismiss me but sit down and talk to me, you know, and let me tell you how I feel. So I wanted to I wanted to know I could have a relationship with the doctor which, you know, I never had had before. And I suppose men more than women don’t go to their GP, I mean I’d never had this relationship so it was important to me that I felt that he was going to be there and help me through it and he had said as much to me that he would that I could go and see him whenever I wanted to and I should make sure to ask for him that you know he would be there to help if needs be. And I took enormous comfort and encouragement form that because I was a bit worried about being alone with tablets that you know affect your mind or could affect your mind.
 
In terms of the information it sounds like you were given a reasonable amount of information by your GP and was that easy to kind of work through and understand and think about?
 
Yes I think there was Patient.net or something that he gave me to look at. But that was kind of sufficient for I could read around it and think about it. But when I was doing the course you know alongside that, what that course has is little video clips of people talking about their experiences. And I actually found that very useful.

At the time I was very strongly of the opinion that you can’t necessarily trust information that you’re given and oftentimes you’ll get no information. They will just say, “Here’s a drug, amitriptyline”. They wouldn’t say it’s a tricyclic antidepressant at all. I’d have to go away and find it all myself. So it was more kind of the fact that I would have to find information out for myself because it wouldn’t be offered to me. And also that I wouldn’t trust any of the information that they gave me anyway.
 
So I felt it was quite empowering. I quite enjoyed it. I resented in a way having to look it up. I resented more their reaction to me bringing in this information.
 
What kind of response would you get from here, from the doctor, actually coming in with that kind of level of information?
 
It was pretty negative to be honest. It would be “Well you know, you have to be really careful. There’s a whole list of side effects as long as your leg.” You know, “You don’t have the training to kind of interpret these things.” You know, what they put down on that sheet is every side effect anyone has ever reported so they have to cover themselves legally and so on. It was pretty dismissive, pretty negative.
 
I think I would have liked to have been better informed, more generally about how long these medications might take to, to be effective. One thing I’ve learned with antidepressant medication is they always say, “Look it takes a while for the levels to build up in your system to the point where they are efficacious. They, they work. But they gave me no particular information about how long that might be. They said, “Well it could be another few months, it could take up to a year, and perhaps even longer for someone.” And also some idea of what the dose, the dosage range was. Now I found that out myself by looking at the BNF and having some idea of what kind of dose it was that they were giving to me. If you’re prescribed 20mg of Cipramil you’re none the wiser, you know whether it’s a high dose, you don’t know whether it’s a low dose or medium dose or what. So I would like to have some kind of indication between what would be considered a low dose or a high dose of what I have. And that’s never given.

Yes I said to him look this isn’t making any difference really I’m still feeling really low and I’m still having very bad thoughts, you know, and I’ve been on this for the best part of a year now, so why don’t we try something else. So he came up with a couple of suggestions and we actually worked through the pros and cons of each drug that he came up with.
 
And the pros and cons meaning what?
 
The side effects of the drug over the benefits of the drug because we obviously we’d looked at sertraline but we also looked at using in conjunction with the duloxetine quetiapine and he explained the drug and the side effects, well potential side effects and we decided in the end that Sertraline was a better option.
 
Is it quite helpful then to have another person that you can go to for support or advice rather than always just having the one person with their own take on things?
 
Yes different viewpoints give you a much wider, I don’t know experience, what might affect me might not affect you and to get different people’s experiences of it gives you a broader vision and you get to see more of how is this happening but this person coped this way and this person coped this way well maybe I can try a bit of both.
 
And I suppose of course a CPN has quite a wide experience of people who are experiencing mental health problems whereas GP’s aren’t quite so specialised necessarily are they?
 
No well that’s part of the problem the GP and I have had with the medication because she doesn’t have the experience of the mental health drugs whereas the CPN since, particularly since doing his nurse prescribers course does have the experience of the drugs and, you know, he sees the patients and he sees what side effects they have.

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?’

I would like to see people giving patients more options so giving them more information in terms of where else they can go for help and certainly more GP’s that have in- house counselling and therapy. But I think the biggest problem with going to a GP when you’re depressed is you come out and you feel bereft, you feel that okay he talked to me for, or she, she’s talked to me for ten minutes they’ve given me some drugs but that’s it. What now if the drugs, the drugs might work they might not. Whereas actually there’s a whole world of support out there and if the GP’s and the medical profession can act as a, a sort of gateway to not just the drugs but all the other places that people can go and, you know, like your website just knowing other people’s experiences. And actually if you went out of the GP’s surgery with a pile of leaflets and a pile of internet addresses and phone numbers you’d think ‘wow this is great. Yes I’ve got some drugs and I’ve got all these other things I can do as well’ and it would, I think because depression is about negative thought patterns, if the medical profession can do something to send the patient out thinking positively, you know, that’s a start.