After nearly five years, I am trying to come off seroxat for the fourth time. I plan to keep a diary of my efforts and to discuss a few issues relating to the greed and lies of GSK, the makers of the drug, the woeful ignorance of the real effects of this drug amongst the medical fraternity and hope to find out what help is available to the thousands of people who struggle to come off it.
Tuesday, 30 January 2007
The plan is to stay at 4mg until the symptoms subside (which I trust they will). It's not constant and gets worse when I eat or drink and last time, it only lasted four days. I think I shall postpone my planned trip to the gym, though.
Last night's Panorama on seroxat and suicide in children is now available on their website http://news.bbc.co.uk/1/programmes/panorama/default.stm
There are also loads of post from users talking about their own experiences.
Sunday, 28 January 2007
Physically, I'm still very drowsy and can easily sleep for ten or eleven hours a day, and my concentration is awful. I've noticed that I recently started waggling my leg when I'm working, something I detest in other people - it really winds me up for some reason. My stomach has been okay most of the time but quite upset on the days when I reduce my dosage even by only 0.1 ml. It's made me apprehensive about leaving the house. I bought some Buscopan, which is for IBS (to which my doctor attributed my stomach cramps when this happened the previous times I tried to quit) and will use it if I get a very bad attack.
I've been to the gym twice this week and have really stepped up the fruit and veg input even further. When I went for my gym induction, they measured my body fat percentage. Let's just say it's one less than my age and on the verge of obesity. When I think how skinny I was before I started taking this stuff, it really horrifies me. I don't think I'll ever get back to the size I was but I pray to God that once this stuff is out of my system, all my healthy eating and exercise will finally start to shift some of it. So far, the best I've been able to manage is to stabilise my weight for a few months at a time.
I feel like I've done the easiest part now, the first 20%, and that withdrawal will get harder increment my increment from now on. The prospect of what might happen next really scares me, particularly as Mr 5ml will be away so much over the next few months. I haven't set myself a particular date by which I expect to be off it, but the plan was to start the fertility treatment in June. At my current rate of progress, I should be off by the end of April (bearing in mind I went up to over 5ml when I switched to liquid). But any reduction has to count as success, it's all a step towards being drug free, getting my life back and maybe having the chance to start a family. So why do I feel quite so miserable?
Wednesday, 24 January 2007
Grrrrr! I am getting all angry again now. Took 4.2 ml this morning and my stomach is a bit off it. Might have to pause at this level for a couple of days. I am going to risk a home-made mango and orange smoothie later - have generally been avoiding anything acidic. I will dilute it with crushed ice to take the edge off it. Rock 'n' roll!
Sunday, 21 January 2007
Have now reduced to 4.4ml but am planning to stay there for a few days before reducing further. I slept well for the first time in a week last night, but there was no respite from the strange dreams. I was trying to buy nasal decongestant in German at some point. My stomach has been sore again and I’ve had a couple of brief dizzy spells but nothing major. I feel like managing this process is equivalent to one day of work a week – monitoring my moods, making sure I’m not sinking into depression, selecting what I eat very carefully to maximise my intake of fruit and vegetables, avoiding reading or watching anything that might unsettle my mood, keeping physically active and making myself go into town and into busy, potentially agoraphobic or claustrophobic situations to test my reactions. It’s a very scary idea that I have been messing with my brain chemistry for the last five years, in ways that nobody really understands. Will it have long term consequences? Will my metabolism speed up again to its old rate? Will my brain have lost the ability to balance my level of happiness on its own?
As I mentioned in a previous post, one of the main reasons for giving up seroxat is because of the effect it sometimes has on newborn babies – an array of withdrawal symptoms and possible heart defects. Now, obviously the drugs don’t make everyone infertile or they wouldn’t know about the impact it has on babies. However, one study suggested that seroxat can seriously reduce men’s sperm count, sometimes even to zero. I’m guessing this has something to do with hormones. If it has this effect on some men, why wouldn’t it do the same to some women? There doesn’t seem to be much information available on this – I suppose they can’t test it out on women who are trying to get pregnant for ethical reasons. But could this be the reason I haven’t been able to get pregnant? And if so, will everything revert to normal if I stop taking it? Would be very interested if anyone has any information on this.
Monday, 15 January 2007
I know exercise is supposed to be helpful in the latter stages of this process so I have joined the local sports centre, which has a gym, pool, sauna and steamroom and runs a range of exercise classes. I love gyms - they are so funtional. As someone who bears deep psychological scars from school PE lessons, I love the fact that you can get fit without having to compete with anyone other than yourself (and I don't see the point of competing with oneself). It's a bit shabbier than the one in Notting Hill but they don't seem to play any music so at least I can take my ipod (though will probably have to take it into the shower if I don't want it to get nicked. At my old alumnus, Kensington leisure centre, I found my ipod, which is only a mini, didn't go loud enough to drown out the R&B remix compilation they had on a permanent loop. Now I just have to work out how to go on the cross trainer with the thing without accidentally garrotting myself with the wires. I am being 'induced' on Tuesday.
Today, I am craving coffee. Before Christmas, I took to making myself a latte at around 4 o'clock every afternoon, which slipped down nicely with a mince pie. It's no wonder the croissant of lard around my front has expanded. I haven't touched the stuff since New Year, but I'm wondering, seeing as it's such a rancid day, I might be permitted a tinsy wincy ickle cup. A thimble of milky magic. We shall see...
Thursday, 11 January 2007
Bad news: see title.
They started in earnest on Tuesday. Thumpety thumpety thump. I was editing a legal article, not particularly exciting, certainly not sufficient for my heart to start leaping around my chest as though I'd just spied my love across the quadrangle. I used to be able to be able to quite clearly feel my heart beating through my chest but, because of the seroxat-related weight gain, I can't anymore which is probably a good thing. Bad enough feeling it rattling around from the inside.
The patient information leaflet includes this on its list of possible withdrawal effects:
Withdrawal symptoms seen on discontinuation of paroxetine treatment
Withdrawal symptoms when treatment is discontinued are common, particularly if discontinuation is abrupt (see section 4.8 Undesirable effects). In clinical trials adverse events seen on treatment discontinuation occurred in 30% of patients treated with paroxetine compared to 20% of patients treated with placebo. The occurrence of withdrawal symptoms is not the same as the drug being addictive or dependence producing.
The risk of withdrawal symptoms may be dependent on several factors including the duration and dose of therapy and the rate of dose reduction.
Dizziness, sensory disturbances (including paraesthesia and electric shock sensations), sleep disturbances (including intense dreams), agitation or anxiety, nausea, tremor, confusion, sweating, headache, diarrhoea, palpitations, emotional instability, irritability, and visual disturbances have been reported. Generally these symptoms are mild to moderate, however, in some patients they may be severe in intensity. They usually occur within the first few days of discontinuing treatment, but there have been very rare reports of such symptoms in patients who have inadvertently missed a dose. Generally these symptoms are self-limiting and usually resolve within 2 weeks, though in some individuals they may be prolonged (2-3 months or more). It is therefore advised that paroxetine should be gradually tapered when discontinuing treatment over a period of several weeks or months, according to the patient's needs (see "Withdrawal Symptoms Seen on Discontinuation of Paroxetine", Section 4.2 Posology and method of administration).
I am going to see what happens over the weekend before going to the doctor. I expect they will tell me to either (a) I am depressed again or (b) that it's nothing to worry about. Having watched M:I3, I of course know how to rig up my own defibrillator, now I just have to train up the cats to use it.
Chest disturbances excepted, things are not too bad. I make sure I don't stand up too suddenly or turn my head to quickly as it feels a bit strange. Definitely wouldn't go on any kind of fairground attraction at the moment. I'm feeling upbeat and positive, though and as prepared as I'll ever be for whatever lies ahead. I am lucky to have friends and family who know what I'm doing and are supporting me; my parents have even offered to come down and look after me if I'm in a bit of a state and Mr 5ml is away with work.
The thing I'm particularly interested in at the moment is whether I might be able to switch to prozac at some point soon. The theory is that prozac has a very long half-life compared with seroxat, thus it can help ease the DTs as you come off the latter (if you buy the serotonin theory) and then is much easier to come off itself. I even believe it makes people lose weight (only kidding! no more long-term medication for me). Dr Healy endorses this method so maybe I can persuade my GP with the help of his print-out from the Mind website. I think I will try this if I have problems coming off the seroxat in a tapered manner. In the meantime, I am guzzling water like a crazy person (I feel really thirsty when I wake up), taking actimel magic yoghurt, omega 3, 6 & 9 tablets and drinking a lot of herbal tea.
Monday, 8 January 2007
I also seem to have lost my appetite mechanism. Since I started taking seroxat, I have been permanently ravenously hungry but for the last four days I have had to remind myself to eat. When the food is in front of me, my appetite is pretty much the same as before. My stomach is no longer sore but it does look very bloated and I can no longer blame mince pies. I have decided to go veggie for a couple of weeks and see if that helps and get stuck into wholegrains.
Another thing I've noticed is that I'm very thirsty and have had a pint glass of water at my side at all times. I've cut out coffee and only have one little cup of English breakfast tea a day, instead of my usual double-sized vat. I'm also avoiding fizzy drinks.
Mainly, though, I've ben feeling generally out of it. I feel like my brain is moving very slowly and my short-term memory is hopeless. I made the stupid error of deciding to test myself with an outing to John Lewis on Oxford Street yesterday. I found the movement of the tube made me a little bit dizzy and while I wasn't too bad with the crowds, I started to develop a hyper-awareness of my own thoughts, as though there's a whole other level of commentary picking over every thought that goes through my head. I used to get this a long time ago when I was having panic attacks and it's a horrible feeling, like having a second voice competing against the first one. I closed my eyes anfd concentrated on staying upright, as I was feeling a bit woozy. Once I got home, I was fine and demolished the paper in a couple of hours, did a bit of work and had dinner.
This week, I have decided to take control of my diet a bit more and have been poring over recipe books for healthy things to cook. From my own experience, I've found I feel so much better when I'm eating well. I positively burst with virtue when I eat fish or cabbage. I am also going to try to incorporate some yoga into my daily routine, in addition to my afternoon constitutional. The plan is to get down to 5ml in the next couple of days.
Tuesday, 2 January 2007
Liquid seroxat is a sickly, nominally orange (though in reality generic fake fruit) flavoured viscous substance, less runny than cough mixture, a little more so than the innards of a fairly warm Cadbury's caramel. It is very sweet indeed, almost as though it had been designed for children (hmm - wouldn't surprise me) and requires a vigorous shake to ensure the drug component is uniformly distributed within the gloop. I personally think this doesn't work very well because my body always knows as soon as I go liquid. I get headaches and abdominal pains pretty quickly.
Once the bottle has been shaken,a rubber stopper with a hole in it is attached to the neck. The syringe is inserted in the hole, the bottle is turned upside down and deplunging can commence. Normally the first half a centimeter or so is just air but this is not a problem. A little plunging gets rid of it and deplunging can resume. I take the plunger up to just above 5ml to allow for the change from pills to liquid and the inevitable and intractable problem of the little bubbles formed through shaking. The liquid is too thick for them to rise to the surface to be dispersed. I then plunge the contents onto a spoon. I find myself licking the spoon clean and plunging several more times to mke sure I get every last drop of the devilish substance. This morning, I even licked the bottom of the syringe - I hate myself! I find the sugar makes my teeth squeak.
Yesterday, I found myself getting somewhat bogged down in the seroxat-related weight gain issue. I suppose it's the most obvious physical reminder of my dependency. I've never had any other problems taking the stuff, though I know a couple of people who it made very unwell as soon as they started taking it and who came off straight away, and there have been plenty of stories about it's tendency to increase the risk of suicide, especially amongst children (see http://news.bbc.co.uk/1/hi/health/4172482.stm), and in some cases has been implicated in homicides (see http://www.baumhedlundlaw.com/media/ssri/Paxil_murder.htm) (paxil is the brand name for seroxat in the US). No, my problem has always been trying to get off the stuff. At first, I thought I was going nuts again. I believed the whole point of the new generation of antidepressants was their non-addictive nature. On a couple of occasions, I forgot to take a dose and by mid-afternoon, had terrible stomach pains, could no longer focus properly and felt unsteady on my feet. I thought I was getting sick and it was only when I got home and realised I'd forgotten to take my pill and found my symptoms disappear within 10-20 minutes that I made the connection.
You don't have to look for long on the web to find plenty of people who have had similar and frequently far worse experiences. When I first looked at www.quitpaxil.org, I was terrified, closely followed by furious. I'm a fairly cynical person (except when it comes to romance and Christmas) so I presumed that, knowing the havoc wreaked by the previous generation of antidepressants, the drug companies themselves and, failing that, the regulatory authorities would have a strict testing regime in place prior to any drug being put to market. Yet it seemed to be the same story again - drug released, expensively marketed, especially in the UK to GPs, prescriptions handed out in their millions and slowly, very slowly, questions begin to be raised. It seems to me that millions of people have been used as guinea pigs for a very powerful drug.
It's not difficult to see why seroxat and other drugs of its type have been so successful. Western countries have experienced a rapid increase in people manifesting symptoms of anxiety and depression, probably imho brought on by the social dislocation, systemic insecurity and advertising/media culture of post-industrial capitalism. They don't have full-blown psychiatric disorders but may have a range of frightening symptoms (eg, panic attacks) that they feel they need help with. In December 2004, the government suggested to GPs that cognitive behavioural therapy or exercise programmes be encouraged prior to prescibing pharmaceutical remedies, but for years, cash- and time-strapped GPs had been handing out prozac et al like the proverbial smarties. Even now, CBT is not available in many areas (either because there aren't enough trained therapists or the are insufficient funds available) and where it is, there might be a wait of months or years. To someone in a situation where they cannot cope with life anymore, this is much too long. Early intervention is crucial in treating mental health problems if they are not to become more serious. SSRIs are no more than sticking plasters but for too long, they have been the only help available.
The question of what to do with the ranks of the depressed is a whole other question (answers on a postcard). What concerns me is:
- how far has the medical establishment (medical practitioners, drug companies and the regulators) accepted there is a problem? I think the answer is they have been forced to accept it- see changes to the patient information leaflet for seroxat http://news.bbc.co.uk/1/hi/programmes/panorama/3005483.stm
- if the withdrawal issue has been broadly accepted as something that effects a significant proportion of seroxat users to varying degrees, what help is being offered to those people suffering withdrawal problems? I don't have much of an idea on this in general but my own experiences suggest the answer is not a lot.
- is information getting through to all the professionals who need to know so that appropriate advice can be given? This is of particular importance in respect of seroxat and pregnancy. See http://www.seroxatusergroup.org.uk/pregnancy_childcare.htm. I have been under investigation for infertility for two years and have been told repeatedly that there are no contraindications regarding having a baby and taking seroxat. I found this stuff two weeks ago and am for the first time eternally grateful that I didn't get pregnant and will not be trying again until I am clean of this stuff.
Monday, 1 January 2007
I started taking seroxat in March 2001. I'd suffered a period of anxiety and depression after moving to London and although I'd learned to control my panic attacks through autogenic training (more of which another time - in summary, it's a form of self-hypnosis popular on the Continent but neglected here), I was still very low, permanently exhausted, avoided social situations and couldn't see a way out. I'd been offered prozac before but had said no. I don't drink or smoke, have never taken drugs and generally like to feel in control (probably part of the problem) so I was very against the idea of magic pills. However, by this stage, I was utterly desperate and a friend had recently started taking one of the old school anti-depressants without incident so I reluctantly went to see a GP (as anyone who has lived in Hackney will know, you rarely see the same doctor twice and this one was about the same age as me - 26) who assured me no one used my friend's pills anymore because their was this amazing drug that dealt with panic disorders, depression and social phobia and was thus ideal to treat me. I can remember quite clearly asking if I would have any problems coming off them when I was ready. No no no, I was told, that doesn't happen with these new drugs.
So off I went to the pharmacist to collect my prescription for paroxetine hydrochoride. My initial dosage was 20 mg, equivalent to one whole tablet. This was quite a low dose - some people taken up to 50mg. I have to say in all fairness, the effects were nothing short of miraculous. Within three months, I had bought a house with Mr 5ml in a slightly better part of town, I began to enjoy my job again, I was able to socialise again, I rarely suffered panic attack symptoms. In short, my life became my own again. I felt as though I was floating on a lovely pink pharmaceutical cushion. I did notice that I started to have extremely vivid and often quite violent dreams almost every night and by the end of the year, my size 10 clothes (I was size 8 when I went on the drugs because I hadn't been eating well, 10 was more normal for me) were bursting at the seams but this seemed a small price to pay for a miraculous recovery from several years of grey misery and a life that seemed to be contracting into itself.
After about a year, I decided I didn't really need the drugs any more and began reducing the dosage by hacking off progressively larger chunks of tablet with a sharp knife. Getting down to 10 mg was fairly easy and took a couple of months. However, as the dosage became lower, so didi my mood. But it wasn't just a psychological thing. I sometimes had a sensation that the whole of the world was moving, rather like being on a cross-channel ferry. At other times, everything would move much more rapidly and I felt really dizzy, just for a minute, but I would have to hold on to something or else I was afraid of falling over. My abdomen felt tender and I was going to the loo about three times more often than usual. In the end, I decided that, seeing as the pills weren't doing me any harm, I'd go back up to 10mg and try again later.
Later was about a year later. By this time, I was a big size 12. Sometimes I had to buy a 14 and would cut out the size labels. Now, I know this sounds extremely shallow and a size 14 isn't big in the grand scale of things. But I had completely changed shape and had had to buy a whole new wardrobe to accommodate my newly prominent backside and I was carrying a bum bag style layer of flab around my stomach. I had always had a stick-like figure and dressed accordingly in tight tops and skinny jeans. Now my old clothes wouldn't fastened or made me look ridiculous. I had to start buying clothes from completely different (frumpy) shops and I didn't feel like myself anymore. Mr 5ml had noticed too. I was the first bride in history not to lose weigh before her wedding and my mother had to let out my dress the night before the service because in three months, I'd gained another inch around my waist.
When I initially realised I was putting on weight, I'd completely changed my diet. Out went pizzas, curry, cheesy pasta sauces, bacon, sausages, chocolate cake and cheesecake, in came salad, brown rice, weetabix, fruit fruit and more fruit. I was eating more healthily than ever and was taking regular exercise (though not as much as I ought to have been doing, I admit) but was still growing. In an idle moment at work, I googled seroxat+weight+gain. Oh. My. God. Not only were there scores of others who had piled on the pounds after taking this drug, I began to get an idea of just how many people had encountered similar and often far worse problems when trying to come off the drugs...