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.

Wednesday, 3 October 2007

0.05ml but really struggling


My dosage is so miniscule now, it's pretty difficult to measure and can't possibly be having any physical effect at all. It certainly isn't enough to mke me feel happy. Since being relocated very much against my will to Hong Kong, I am about 8,000 miles away from the friends and family who have supported me throughout this long, tedious, difficult and drawn out process. Having been through two failed rounds of fertility treatment over the summer and having just learned I will need to have an operation if I'm to have any chance of conceiving, I cannot think of a worse time to have been uprooted.


On the positive side, I don't seem to have put on any more weight and after about three weeks of really regular and sometimes persistent palpitation, my heart has been back to normal for 72 hours. Logically, I can see that if I get up tomorrow and don't take my medicine, I will probably be fine and not experience any further side effects. But I can't quite bring myself to do it yet. I've been on this stuff for six and a half years and you start to doubt whether you can function on your own (recent experience would suggest, erm, I can't). It will happen, probably within the next week or so (it would be so nice not to have to lug bottles and syringes through customs any more), but not until I'm properly prepared.


Rather unhandily, my very helpful Feeling Good Handbook, as recommended by the nice people at Newham Primary Care Psychology, is at home in the UK. I waddled along to the local English language bookshop but while there was a lot of self-help guff, there was nothing specifically about CBT. I have found myself behaving and thinking like a depressed person a lot since I've been here and I need to get a grip. Depression is something you have to guard against every day of your life if you are prone to it. Unfortunately for me, chocolate chip cookies and retail therapy are never going to be enough.


I need a back to basics healthy eating and fitness plan and to be returned to my place of origin as soon as possible.

Tuesday, 28 August 2007

The palpitations strike back

I went to see the doctor three weeks ago while at 0.3ml because I'd been having palpitations every day for at least part of the day for about 10 days. She was very sympathetic and thought that it was the seroxat withdrawal that was causing them and reassured me that while they are undoubtedly unpleasant, they aren't doing lasting damage to my heart. She said it was safe for me to exercise and that a bit of a work out might even get things working properly.

After that they pretty much stopped for a couple of weeks until this last weekend, when I finally got down to 0.2ml. Yesterday I woke up with that deep vibrating feeling in my chest and it didn't really go away all day. The same happened this morning. I'm avoiding all stimulants, but especially coffee and coke, and trying not to dwell on it, but it is a horrible sensation, the missed beats accompanied by a strange feeling at the back of my head. I am quite anxious at the moment anyway because of moving abroad and some other fairly horrific medical treatment I've been undergoing and whether the palpitations are being exacerbated by this, I don't know. I might try a long hard session of Cher Fitness: A New Attitude tomorrow - it's kill or cure.

Monday, 16 July 2007

The End is Finally in Sight

Am now down to about 0.27 m. I've had a few headaches but I've taken to drinking about three pints of water every afternoon and this seems to have helped. I've not experienced anything weird for a while but I still can't quite believe that I'm going to get away with such an easyride. I fear something horrible will pop up to bite me on the bum just as I think I've got away with it. It could still happen when I come off completely so I will be taking the last bit very very slowly. A 1 ml syringe has recently come into my possession so I can be really quite precise about it. I'm hoping that the level of seroxat in my body is now so low that it won't notice its complete absence.

The bad news is that the weight I put on over the six years I've been on seroxat doesn't seem inclined to fall off of its own volition- I'm going to have to put in some serious work at the gym. BUT, I'm definitely not as hungry as I was before and I'm not getting the big blood sugar crashes I used to suffer from.

My moods are pretty even and stable, though I am consciously taking it particularly easy at the moment. Not sure how I would stand up if I got myself a proper job again and hd to commute. I was on the point of properly flipping out on the Central Line the other week when I got stuck in a very hot tunnel.

Still, it could be much, much worse.

Tuesday, 19 June 2007

0.7ml


Have been making a real effort to reduce my dosage every day for the last few days and am hoping to hit 0.5ml by the weekend (today is Tuesday) and to quite completely by the middle of July. Have been very down generally but reducing my dosage doesn't seem to have an effect on my mood; it's been low but stable. In fact, if anything, my moods seems to correlate with the prevailing weather conditions. Does this make me the most superficial person in the world? I hope so. Then all my problems could be solved by moving to Spain.


However, it's not Spain that I'm going to be moving to but Hong Kong. Him indoors has been made an offer from work he couldn't refuse. I could have refused it very easily, and wanted to, but as a compromise I am going for three months and if I hate it, I will come home. I am worried about everything, of course - the pollution (see photo), food, the humidity, where we will live, not knowing anyone, the business of the place (I have panic attacks in Soho) - but am trying to not get in a state about it. That is to say, I have already been in a state about it and it isn't particularly productive, so I've decided to take the zen route.
Not sure how good an idea moving somewhere quite so hectic is so soon after coming of seroxat. We are not due to go until September which gives me a while to completely come off. I suppose it will be a good test...

Thursday, 31 May 2007

Meltdown


Had another of my special seroxat insomnia nights last night. I used to sometimes have problems getting to sleep at night from time to time and in my most depressive phase, I would wake up at 5am and worry until the alarm went off. But in the last couple of months, I've had three or four nights where I haven't slept a wink all night, not even 20 minutes here or there. I don't feel especially stressed or preoccupied, I just cannot drop off. By about 4am, I start getting a bit agitated and distressed and then eventually I decide to cut my losses and get up and hope to grab an hour in the afternoon.


I was down to about 1ml but have gone back up to 1.25 today. Can't cope with this while my support network have a) gone to Hong Kong, b) gone caravanning for a month in France (and are a bit stingy with the mobile phone use - you know who you are!) and c) have just been selected to run for parliament. I need to get down to the gym, read Sherlock Holmes before bedtime and maybe neck some antihistimines (sic?).


On a scale of 0-10, with 0 being loitering on top of multi-storey car parks/eyeing the carving knife with longing/sniffing weedkiller and 10 being wedding/birth of first child/Forest beating Man Utd, I'd say I'm about a 4. Successive gloomy thoughts. Feelings of hopelessness. Feelings of abandonment/isolation/loneliness. Last time I felt like this, I went to Sainsbury's and bought a massive chocolate cake. Maybe I should try that again.

Wednesday, 23 May 2007

Up again and back down again

God, this is getting tedious. Have been away. While I was away I got really ill. After 5 days, I wondered if it was the dreaded 'flu-like' withdrawal symptoms so I went back up to 1.5ml for a couple of days. It wasn't. I am now getting better and am back down to 1.25 ish, hoping to reduce to 1ml by the end of the month.

I just want this painstakingly slow process to be over and finished so I don't have it hanging over me any more. However, I don't want to stop very suddenly, go loopy and it to all have been for nothing. It's always the end of things I hate. I'm a starter, not a finisher. I'm also getting very angry with stuff generally, mainly politics, husband (absences and smoking thereof), annoying noisy neighbours, that sort of thing. I know my irritability is being heightened by the gradual wearign off of the Seroxat. Perhaps this is my natural state - Victor(ia) Meldrew. Anyway, if they pluggefd me into the National Grid, I'm sure my righteous anger would be sufficient to ensure that no new generation of nuclear power stations will be needed.

*Goes to lie down in a darkened room.

Friday, 11 May 2007

1.3 ml this morning

Am getting my palapitations again but not too severely and am trying not to think about it too much. Don't feel like goign to the gym this avo as originally planned, though. Intend to cut down very slowly over the next week or so as I'm going to be away from home. If I drop another ml in the next week, that will be fine.

Monday, 7 May 2007

Inching closer to a drug-free life

Am now down to 1.45ml. It's feeling quite bumpy now, as though the metaphorical tyres of life have deflated and I can really feel every imperfection in the road. I find that spending time in the garden helps (killing these things http://www.rhs.org.uk/advice/profiles0206/rosemarybeetle.asp), as does cooking, reading lots of Sherlock Holmes, avoiding big social situations with people I don't know and trying to keep everything in perspective. I've not reduced as much as I'd hoped since the beginning of May because I've been on my own with Mr 5ml (or should that be Mr 1.45ml?) away and I had another bad spell of insomnia last week. That was where Sherlock Holmes came in. I find him a reassuring presence.

What I haven't been doing much is exercising, apart from my usual trips to the shops to buy provisions. I was ill for a week, recovering for another, then busy/lazy last week. Must try harder.

The great thing is that physically, I've not had that many symptoms - the seroxat headache has gone, my stomach feels okay (aided by industrial quantities of Actimel), occasional dizziness but not too bad, no real weight loss but no further weight gain. It's funny that it was the physical aspects of withdrawal that I feared the most - in fact, I do still fear them kicking in when I quit altogether. I think I had forgotten what it felt like to be depressed - or rather what it didn't feel like, because I didn't feel anything except a low, dull ache of loss of something I couldn't ever identify. I do feel aspects of that now, but more because of missed opportunities and stupid mistakes I've made, but I am trying not to dwell on them. I started reading 'The Interpretation of Murder' yesterday. On the first page, there's a passage about how to be happy, you have to live in the present, whereas to find meaning, you have to look into the past and the future. It made sense to me, as did the happy pig and the unhappy Socrates when I was studying Mill at college. I think the way to square the circle is to operate on different levels at different times and to be able to switch off your brain. I don't think the two are mutually exclusive in a single person. I like Hegel. But I like Viz too. I always wanted to be able to reconcile opposing ideas, find a middle way, to have it all at the same time. You probably can't have everything, but you can have more than you think you can.

Monday, 23 April 2007

Article in Best Magazine last week!


Had a short piece publish in last week's edition of Best magazine last week. it took the format of a diary piece, detailing five days in the life of someone trying to quit seroxat and was part of a larger feature on habit-forming prescription and over-the-counter-medication. Was great to be able to raise awareness about the hazards that come with the benefits of antidepressants. These kinds of issues are fairly frequently covered in the broadsheets but not always in the rest of the media.


I'm now down to 1.9 ml, 0.3 ml away from my target to achieve by the end of the month. I think I'll be able to do it but it's not a strict deadline. I had a crappy week last week because I had a stinking cold and had four nights in a row with interrupted sleep (including two nights of less that three hours). Too much time lying awake is no good for anyone's mental health, far too much time to brood and analyse. I'm thinking more and more of where my life is going, my (lack of) career, what will happen if I never have children, impending ecological meltdown, etc etc, and not in a helpful or productive way. I am reverting much more to my usual (ie, pre-antiddepressant) pessimistic outlook on life and I know this is something about which I have to be very careful or I could slide back into my pit of misery. I counter it by telling myself this isn't the time to be overly concerning myself with the big questions (what is the point? what am I here for? is it worth living? does my bum look big in this? etc). I have to focus on my health and on doing things that make me feel okay, rather than beating myself up for having ruined my career, lost my looks/let myself go, and the general pattern of self-defeating behaviour and self-pity to which I am prone. The great thing about the past is that it is over. Things are done that cannot be undone and they can jetisoned when they are no longer useful. How awful would it be to reach the age of 80 and to still be fretting about what might have happened had I not sent my last 18 months at university hiding under the duvet. Looking forward is incredibly liberating and exciting, and something I never managed to do until I was about 30. I was always chewing over the stupid mistakes I had made and my failure to learn from them. If you are always looking backwards, you are not open to opportunities that might open themselves up in the here and now. I should remind myself of this a bit more often.


So I am feeling a bit more like an authentic version of myself, rather than a pharmocologically zen one and though this is a slightly less comfortable sort of existence, at least I am moving towards being a fully feeling and engaged person, for good and for ill. I need to concentrate on self-awareness and avoid self-pity.


I feel like the physical side-effects have become much less severe as the psychological changes within me have become more pronounced. Am still tempted to try to go cold turkey but am a bit too chicken (ker-ching!). I think the most beneficial thing I've done in the last few months is to go out into the fresh air and countryside in Southern Germany. I sometimes wonder if I'd lived in beautiful surroundings whether I'd ever have become depressed in the first place.

Thursday, 5 April 2007

2.4ml

Passed the psychologically important 2.5ml mark last weekend. This is the point at which I gave up giving up on previous occasions, because I felt tired, dizzy and completely spaced out. This time around, I'm not having to fit in a 40 hour working week and a daily three-hour commute, so I'm able to wake up naturally and sleep in the afternoon if I want to. I'm still doing enough work to make my eyes sore but at least I'm not in an open-plan office with 40 people yelling down the phone around me.

Apart from my niggly seroxat headache that comes and goes and a little bit of giddiness when I'm on the treadmill at the gym or when objects move to fast across the TV screen, I'm feeling pretty well. No major digestive disorders, sleeping well, not too many negative thoughts. I have noticed a marked change in my appetite, though, over the last three weeks or so. I have lost that sense of being ravenously hungry all the time and I'm not having carb cravings. I've found myself not hungry enough to fancy my usual mid-morning snack of fruit and yoghurt, nor do I need an apple and a banana to keep me going before dinner. I'm also eating less rice or pasta with my meals and have even left food on my plate at the end of a meal, which is much more like the old me. Perhaps I've reached the level where the seroxat isn't interfering with my appetite levels as much and, who knows, I might at the very least stop putting on weight and may even lose some. I'm trying to go to the gym twice a week to keep it under control and generally get my circulation going. I can't see myself ever being a size 8 again but I would settle for a 12.

I went through a phase a couple of weeks back of feeling extremely aggressive and angry, which i now think is a consequence of the magic pink seroxat glasses beginning to fade away to reveal East London in its true glory. Things that I was previously oblivious to I am starting to notice. It's an odd experience - a bit like the rough edges are coming into focus - perhaps it's a bit like when I was first diagnosed as short sighted and with my new glasses was able to see the individual branches on the trees instead of an indistinct green blob. It's very comforting being in your own little bubble but it's not really being alive, not properly. I've always felt seroxat provided an assymetric filter, filtering out the bad things and only leaving the good ones, but maybe it has been diminishing the latter as well. Certainly, my emotions have felt blunted and I've been able to put up with things that perhaps without my chemical friend, I wouldn't have stood for. I am apprehensive about losing that security blanket, but I'm more afraid of being stunted by its effects for the rest of my life.

My plan is to try and come off it by the end of June, with mini-goals to reduce to 1.6ml by the end of April and 0.8 by the end of May. It's so tempting to just get up one morning and not take it and see what happens but I know that if I had a really bad reaction it could really set me back. The fact that I can manage on 2.4ml is quite amazing seeing that I'd been stuck on 5ml for five years. I am cultivating patience.

Sunday, 4 March 2007

Visit to the doctor

It was time for my precription to be reviewed last week so I made an appointment at the local surgery. There are two doctors I normally see: one when I want to discuss something and ask for advice, the other when I just want to get my prescription no questions asked. The former was on holiday, though, and the latter was off sick so I ended up with a locum. Most of the locums I've met are young and quite keen but they have a tendency to want to go through my history of depression. Now, depression is depressing, not something you'd necessary know from all the stuff about tortured geniuses on the TV. I have never experienced explosions of intense creativity while depressed, I've not dashed off a brilliant novel, or composed a great piece of music that tells us something Fundamental About Humanity, much less transformed the visual arts despite the presence of a large piece of cotton padding taped to what used to be my ear. (That said, I have been known to go on manic cleaning sprees when I'm feeling particularly fed up.)

No, my 'vanilla' experience of depression has been one of loneliness, boredom and fear. My worst two years of depression (ca 1999-2001, until I started on seroxat) are almost a complete haze. Depression is staying in on a Saturday night with the curtains drawn, being afraid to be alone but being more afraid of being with others, holding back, settling for second best, avoiding risks and worrying about everything. Being depressed is by far the most boring thing that has ever happened to me, as well as the most insidious. Just when you think you've got it licked, it can creep up and smother you again. I know keep a sharpened key in my pocket for every time it tries to assail me.

So anyway, whenever I see the shiny enthusiasm of the young doctor so recently let loose on the general public, my heart sinks as he (or she) probably wants to know all about my depression. Having been brought up to be polite to my betters and to regard the medical fraternity with a deference normally reserved for HM herself, I always used to answer their questions, no matter how banal, in the hope that perhaps this is the doctor who will be able to fix me. Now that I feel tricked and betrayed by the entire pharmo-medical complex, the GP, as the gateway to the health service, has, probably rather unfairly, become something of a hate figure in my mind. This poor guy is going to get it.

I say that I have to have my prescription reviewed and tell him I am on 3.25 ml of seroxat.

I have to repeat the quantity three or four times.

"3.5?" he asks.

"3.25.' I reply. He clearly thinks I'm a fruitloop for knowing how much I'm taking to 0.01 of a millilitre.

He takes a look at my notes onscreen.

"So you were given seroxat for irritable bowel syndrome?" he asks.

Oh dear. "No, I got irritiable bowel syndrowm when I tried to come off seroxat."

He nods. "I see. It's just that we do prescibe it for irritable bowel syndrome."

I only just smother my snort and control the urge to hurl myself to the floor and start beating it in horror and disbelief. You simply could not make it up.

He tells me most people manage to come off seroxat in about three weeks so he's surprised I'm taking so long to do it. I tell him about the palpitations and he says he wonders if this is being caused by something other than the seroxat. I tell him that I didn't get these kind of feelings even during panic attacks and that Glaxo themselves have said that it can be part of the 'discontinuation' syndrome. I ask him to get out his big white book of drugs that they all have but he's happy to take my word for it. Besides, my allocated 8 minutes must almost be up.

He does my blood pressure - text book - and then prints off a prescription for two bottles or magic honey juice. He says he will put '3.5ml gradually reducing' on the label. Can the system not cope with 3.25?

I raise the subject of half-lives and possibly going onto prozac later and he seems fairly receptive to that idea. I'm not sure why I bother. I'm unlikely to ever see him again.

Thursday, 22 February 2007

Very slow progress

Was doing pretty well until about Thursday. I've now reduced my dosage to about 3.4 ml and have generally been feeling fairly positive, if a little sleepy. However, on Thursday what I call me seroxat headache came back. It's a tightness around the back of the head accompanied by dizziness. I finished working at 3pm and went to bed for a couple of hours, after which I felt considerably better.

However, I have experienced the return of the IBS symptoms that I've had in the past when I've forgotten my pills. I was going to the loo every half an hour and my whole abdomen felt sore and bloated. Everything would settle down by around 3pm but I still didn't feel particularly hungry (something unknown to me since I started taking seroxat 0 I usually have the appetite of a particularly hungry horse who has just run a marathon) and I felt physically as well as mentally lethargic. I tried eating a banana in the morning, which normally has a 'binding' effect. Not so this time. By this morning, I was thoroughly fed up and hit the immodium and this seems to stop the spasms and I fell much better. It will be interesting to see what happens tomorrow.

This whole process feels like I'm conducting an experiment on myself. I'm trying to live with the mood swings, headaches, dopiness, loss of concentration etc, and not get too annoyed by it. Any physical symptoms I am managing through nutrition, different types of exercise and over-the-counter medicines as a last resort. CBT has been useful to keep a check on myself when I've started to get stressed out and overwhelmed. So far, I've only had a very few moments when I've felt like it's all too much. I find the physical side of this the most difficult. I have a very low discomfort threshold, particularly when it comes to my digestive operations which is why my previous attempts to quit didn't work. I am really hoping I haven't hit the level of drug whereby my stomach starts acting up all the time. I'm relying on my body getting used to this lower dosage and getting back to how it was before. It's always so tempting to just keep cutting back and cutting back and patience is not my forte. But I think I have to stay at this level for as long as it takes for my stomach to settle down again.

Thursday, 15 February 2007

Mood swings

I remember a few years ago, Lou Reed released a particular miserable and morbid album about various friends of his that had recently died of cancer. One line went:

'Sometimes I feel so happy,
Sometimes I feel so sad."

Yep, a simple but effective summary of the last few days. I have had periods of euphoric happiness and a sense of total contentment. This is very unlike me. I tend to be even-tempered, possibly slightly erring on the side of discontented. I am deeply suspicious of extremes of happiness and sometimes find myslef consciously disengaging from an experience when I'm having too good a time, for fear that it will lead to some kind of punishment to 'even out' the score. And so it has proved, because I've had some thoroughly wretched, snivelling-whilst-doing-the-washing-up-and-thinking-about-dead-relatives moments. I even had a panic attack lasting around two hours yesterday. It was only a fairly mild one - hyperventilating, stomach cramps, shivering, fear of illness (rather than fear of death) - but still, I mainly don't have panic attacks any more and it's always a bit frightening when they happen. My usual post-panic attack remedy is a cup of camomile tea with a spoonful of sugar. I wonder if this is linked to my blood sugar levels crashing in some way. I often experience a strange, 'bloodless' feeling these days, often accompanied by a nagging tension headache around the back of my skull.

I am still very lethargic as well. I have risked coffee this afternoon (1 part weak coffee to 2 parts milk) to stay awake and get some work done. My dreams are so weird, even by seroxat standards, that I wake up feeling like I've been given a convulated psychological puzzle to decipher. I'm a great believer in drawing meanings from dreams. By that token, I am also a very twisted and sick individual.

Am now on 3.7 ml a day and don't intend to go down again for another couple of days. From what I've been reading on the interspazz, I shouldn't be dropping by more than 10% a week. But does this mean 10% of the original dose or 10% or whatever I am on at the moment? I don't think it matters to much at the rate I'm going. I've managed a less than 25% reduction in a little over six weeks. But I am still here and am not doing too badly, I suppose.

For anyone else doing this, the following seem to work for me:
  • chocolate - not very much, only one piece of Dairy Milk a day, but it seems to make me feel happy
  • Mozart
  • comedy - have been watching second series of Peep Show
  • having a very nice husband (hello dear!)
  • going for a walk every day, regardless of the weather
  • keeping the house reasonably tidy - there is enough chaos in my brain
  • avoiding aggravating media, such as the morons on Five Live in the morning, the Daily Mail mongboards (must break my addiction), Jeremy Vine's creepy intonation on the old Jimmy Young show, all BBC news programmes apart from Newsnight, Mariella Frostrup (her voice is like nails down a chalkboard to me), oh yeah, and that programme with Jeffrey Archer
  • sleeping, a lot
  • dumping all my banal thoughts on this process on the internet.

Saturday, 10 February 2007

Feeling fantastic!

Actually, I've got one of those weird modern colds where you get a blocked up nose and then create mammoth amounts of thick snot, I have a slight, niggly headache and my nose is bright red from blowing it, BUT I feel hale, hearty and cheery. As any long term depressive knows, this probably means I'm going to crash into a pit of doom at some point fairly soon, but, for as long as it lasts, I am enjoying feeling upbeat.

Things that seem to have a positive effect on my mood:
  • the snow (even though it was pitiful how quickly it melted here - it just lasted long enough to have a yomp over the local play area in my wellies)
  • mini Creme eggs - one a day
  • chips - yes, I know this is exactly what I shouldn't be eating but then I did have it with fish (good for the brain) and peas (lots of roughage, as they used to call it, or fibre in the modern parlance). And I did make up for it by having healthy soup for tea
  • soul music
  • obsessively watching season three of 'The Wire' which has just come out on DVD
  • cleaning the house

I am now down to 3.8 ml and I think I'm just relieved not to be feeling as rancid as I felt the week before last. Once my nose cold has cleared up, it will be back to the gym for some gentle exercise. In the meantime, I will slowly, slowly keep reducing my dose and hope for the best, prepare for the worst.

Monday, 5 February 2007

Back down to 4.1ml

The palpitations finally stopped yesterday, thank goodness, so I felt able to make a slight reduction in my dosage this morning with no advers effects so far. I have started pouring the liquid into the plastic measuring lid and syringing from that, rather than using a bottle adaptor thingie. It means I get almost no bubbles at all and much greater accuracy than before. And more of the deadly medicine delivered into my system...

Felt so horrible all of last week that I hardly left the house. In addition to my physical symptoms (nasty headache, chest pains, palpitations, restlessness etc), I felt so low I didn't want to engage with anything. I'd been feeling stupidly positive and things had been going so well that I'd forgotten about all the nasty symptoms that might pop up at some point. I don't know whether my mood has improved as a result of increasing my dosage again, because I was going through a grumpy phase and have naturally come out of it or because I ate junk food all weekend and feel full of cheap and nasty happy chemicals. I wonder if you could mask all the withdrawal symptoms by replacing the part of seroxat that stops the serotonin from dying with a cocktail of blue smarties, Haribo star mix and and flying saucers. I always feel better when I've had some chocolate and, thinking about it, I had no chocolate last week for the first time in ages. I may conduct some experiments in this regard...

Thursday, 1 February 2007

Back up to 4.2 ml

After four days of the following symptoms, I reluctantly decided to increase my dose a bit:
  • palpitations
  • horrible sickly tension headache
  • inability to sleep for more than 30 minutes at a time
  • all day drowsiness
  • sore eyes
  • wooziness whenever I bend down and stand up again
  • a couple of dizzy episodes
  • agitation

I think the rubber adaptor for the syringe has started to perish and as a result, I've been getting loads of massive air bubbles. This morning I poured a lod of liquid into the measuring cup and sucked it up from there (it's much gloopier than I thought and doesn't pour that easily) and that worked much better.

Am feeling cross with myself for having gone back up again but at the same time relieved to feel a bit more normal (although my eyes are still very sore and I'm tired). Hope after a decent night's sleep to go back to 4.1 tomorrow.

I read that avocadoes are very good for the brain so at least I have an excuse to feast on guacamole for the next few weeks.

Tuesday, 30 January 2007

Return of the Palpitations

Kicked in in earnest yesterday, as usual, when I was involved in the strenous activity of, er, sitting down. They are not painful, but uncomfortable and disturbing. When your heart starts doing things it doesn't normally do, you are bound to worry. I get a peculiar tightness in my chest and a sensation of my whole upper torso reverberating dully against my rib cage. It's a bit like the feeling you get at a gig when you are standing at a too close to the speakers and the bass is loud enough to make your bones shake. It happened to me both times I went to the Scala (Suede just before they split up (crap without Bernard) and LCD Soundsystem (before they were famous).

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

Finally down to 4ml

Day 28 and have now reduced original 5ml dose down to 4ml. Have felt generally a bit low - no doubt in part because of the time of year and Mr 5ml's frequent absences with work - but I feel like I'm starting to emerge from my protective bubble. Things I've managed to ignore or haven't noticed for the last five years are starting to affect me, particularly my physical environment, the grimness of this part of East London, the dirtiness of the streets, the brutalist architecture or some of the tower blocks, the abandoned warehouses and filthy facades of the high street. I am also starting to feel the disconnect between people here, the way people at best politely ignore everyone else or more often, interact with an undercurrent of defensive antagonism. Too many rats in a cage and they start eating each other.

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

Panorama, Monday 29 January

Just a quick one to say that Panorama are running another follow-up programme to their 'Secrets of Seroxat' edition which prompted 60,000 emails when they reported on the difficulties patients have coming off our little white friend. I have just written an email to them regarding the withdrawal symptoms in neonates/heart abnormalities issue. This is something I don't think was mentioned in previous programmes and yet it's there, in black and white, on the patient information leaflet. Have put the link on the left hand side of the page: http://news.bbc.co.uk/1/hi/programmes/panorama/5346938.stm

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

4.4ml

When I feel strange, how do I know whether I’m just feeling strange, if the drug withdrawal is making me feel strange or whether anxiety about the drug withdrawal is making me feel strange? Anxiety has a life of its own and is capable of producing its own set of physical symptoms.
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

The healing power of exercise

The palpitations stopped on Friday so by Sunday, I felt ready to reduce my dosage again. Have reduced by a plunger width every couple of days amd am now down to about 4.7ml. Felt really stinky on Tuesday. I'm not sleeping well at the moment and seem to wake up every couple of hours. Have also been having even weirder dreams than usual. The other night, Freddie Ljungberg was stabbed to death outside the Royal Hotel in Ashby. Am really struggling to get out of bed, too - although the weather outside might be a partial explanation for that. It is a bit like the apocalypse - howling winds and rain beating against the window. For a month.

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

Palpitations and Prozac

Good news: now down to 5ml.
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

Day 7

Have now reduced my dosage to about two millimetres away from the 5ml mark, a decrease of about 5 millimetres from my initial starting point when I switched to liquid. I have noticed a number of symptoms but luckily they are currently irritating rather than seriously unpleasant. The first couple of nights, I had trouble sleeping but since then, I have had more trouble waking. I'm very grateful that I work from home so I can sleep for as long as my body wants. I seem to come round at about 9.30 but it takes me another half an hour to fight through the grogginess and actually move. My eyes feel gritty and heavy and most afternoons, I feel as though I could easily nap for another couple of hours.
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

Bl00dy bubbles

Rather a fittingtopic to be preoccupied with today after my local side, West Ham's six-goal drubbing yesterday.

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

New Year, New Drug Regime

So, today is the first day of my latest attempt to come off seroxat. I've unearthed a number of dust-covered bottles of liquid seroxat, luckily all still within their use by date, along with my kiddie measuring syringe. It's only when I'm on the liquid that I feel like an addict - my measuring kit smacks of drug paraphernalia.

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...

TBC...