I thought it might be useful to people to record some of my experiences of this drug. Often you read the package inserts/instructions and wonder whether you have enough courage to take them at all given all the possible side effects.

I seem to be one of these people that tends to show up side effects - dont know why, but here's what I experienced with this drug. PLEASE PLEASE PLEASE read this whole page - I know this is quite long, but I can only assume you are actively seeking information if you arrived here, and if you don't read both parts you wont get the full story - in particular how things change and improve over time. THE END RESULT IS VERY POSITIVE.

Also - if you find this information helpful, I would be so grateful if you dropped me a note to say so. I'm currently writing a book and want to include this information - so your opinion will help decide whether it goes in or not. You can use the feedback link at the bottom of the page. If you are interested in seeing/commenting on the book before I get it published, let me know - it's about the life changing effects of this illness.

Part 1- the first time round

Tricylclic anti-depressants have been around a long time, and these days SSRIs (Selective Seratonin Re-uptake Inhibitors) tend to be prescribed in favour of Tricyclics. The mechanisms by which they work have similarities, but Tricyclics tend to cause more drowsiness and are also dangerous if taken in over-dose. Naturally doctors are cautious about prescribing such drugs for someone suffering depression and possible feelings of self-destruction where an alternative is available. Having said that, they’ve been around for plenty of time and at prescribed levels they are effective. 

Often you read the package inserts/instructions and wonder whether you have enough courage to take your medication at all given all the possible side effects! I tend to work on the basis that it’s worth a try, because usually the benefits outweigh the side effects, and problematic side-effects can often be controlled with other specific medication. I should also point out that I seem to be one of these people that tend to show up lots of side effects, even the rare ones – I don’t know why - but bear that in mind as you read the following and don’t be put off.

For my first encounter with Dosulepin I started on 75mg per day, to be taken in the evening. My GP specifically chose this medication because of the drowsy side effect, which is usually undesirable, but in my case very desirable for helping me deal with insomnia. This was certainly the case - exactly three hours after taking the tablets I would begin to feel drowsy. I would get the sensation that my brain just wanted to switch off - so even if I was watching a favourite TV programme, by brain would just say "ok - had enough now!" and I could no longer concentrate. It was an odd feeling that I've never had before, but not unpleasant - in fact it was nice to be able to go to bed and fall asleep easily.  Alcohol also exaggerated this effect. I imagine it being somewhat like the sensation babies and toddlers must have when you see them in clips on You’ve Been Framed, struggling to keep their eyes open and falling asleep face first into their birthday cake. I avoided all birthdays and cakes for this very reason.

The down side to this was (not) being able to get up in the morning. I struggled to even get out of bed before 9.30 and felt groggy for the best part of an hour. Of course, this could interfere with work, but that’s where I benefited from being a home-based worker: if I woke up at 9.29 I could be in the office by 9.30!

In the first few weeks of taking the drug there were some more bizarre and 'disturbing' effects. I say ‘disturbing’, not in the sense of being paranormal or horrific, but in my depressed state I actually found them upsetting.  The two main effects in this category were a loss of co-ordination and a sense of confusion – and these were distinctly different.

The co-ordination problem lasted the shortest - about two weeks. It’s hard to describe, but it’s almost as if there was a delay loop in my brain of a fraction of a second, such that my thoughts, actions and visual feedback were all slightly out of time with each other.  The result was I couldn't put lids on jars; I kept knocking the coffee jar all over the kitchen top; I would knock cups over on my desk etc. It was like my brain couldn't tell where my hands were fast enough. I found this difficult to cope with and in itself it caused a degree of anxiety, because basically I was wrecking the place! Also, it was making typing very difficult, which I needed to be able to do for my job. Rather unexpectedly, driving seemed to be ok - I can only suspect because most of the required motor actions are automatic. Certainly I wasn't crashing gears, missing the pedals, clipping kerbs or anything like that; and my reaction times seemed normal. Whether I could’ve negotiated a slalom is another matter, but funnily enough such a hazard didn’t crop up driving between home and the doctor's surgery.

The confusion manifested as an inability to complete sentences or remember things - either events that have happened, or even just simple words. I'd want to use a fairly normal but "not everyday" kind of word - e.g. "investigate" - and I just wouldn't be able to come up with the word. I would know the word existed and how to use it, but as soon as my speech needed it I would draw a complete blank. This lasted longer than the confusion, about six weeks in total, but eventually went too; but was incredibly frustrating while it lasted.

Then I went on an increased dose of 100mg per day. It is standard practice to ramp the dosages up over a period of several weeks as the body begins to adjust, and to find the dosage that is having noticeable effect. At this level I began to experience mild constipation, but could deal with it painlessly by taking constipation relief once every four days or something, e.g. Senna tablets.

Before long I increased to 125mg per day – still a relatively mid-range dosage. However, at this level I began to suffer extreme constipation – obstipation - and trust me, you really don't want me to describe the details. However, it was AGONISING - totally unable perform “on the loo” and barely able to even get there. The only way I could live through this was to take constipation tablets every day. After three weeks I gave up hope and had to come off this dosage and drop back down to a relatively low 75mg.

Latterly I became convinced the drug had a mild hallucinatory effect. This was not in the sense of ‘seeing things’ floating in front of me as such, but when I glimpsed things out of the corner of my eye (e.g. even just a bit of dust on my eyeball, or a reflection in my spectacles) I would be very jumpy and thought someone or something was coming towards me (e.g. a large insect coming at me). It happened too frequently and too intensely and too noticeably to be my "normal reactions" - it's definitely as if things in the corner of my eye magnified my natural responses. [As an aside, the brain does in fact detect movement best at the periphery of your vision. This is a survival mechanism, which allows it to react to things creeping up on it. But it shouldn't be making you jump three or four times a day, which was happening to me].

I also suffered from the expected carbohydrate cravings which are associated with Dothiepin. In most instances this would manifest as an urge to eat something specific, such as fudge - which is not normally something I would eat at all, as it's so sugary in taste.  But I would crave this from time to time, often late at night when the 24-hour Tesco came to the rescue - and generally I would find myself snacking more often. Over the course of about three months I put on about half a stone.  

For the remainder of this period I stayed on 75mg. Although it helped me sleep, which I was so thankful for, I'm not convinced this dosage helped much with my anxiety. I could still get tearful on occasions and feel unable to cope, although admittedly it was more infrequent. However, I came to the conclusion that the (barely apparent) benefits were being outweighed by the side effects and that’s when I went back to the doctor and ended up on Flupentixol. (I won’t make that mistake again.)

Interlude- ignore people who try to convince you not to take medication

I’m very conscious that a rather long and dry article on the ins-and-outs of a particular medication probably seems a bit tedious and pointless. But it’s also possible that amongst the readership are individuals who are about to start with, or ask for, medication, or are just really unsure about it for any number of reasons. Anti-depressants seem to have had their fair share of bad press and I’m not surprised to have spoken to individuals who want to steer clear of taking them, even if they have already been prescribed. My personal view is that this is a mistake and is being far too over-cautious. Unless you think your doctor is an imbecile, then any competent GP has prescribed anti-depressants because in his/her judgement the benefits are going to substantially outweigh the negatives (most of which you will never encounter). If you’ve taken the trouble to go to the doctor to get his advice, then why ignore it? I’d urge anyone in this position to keep reading, as you’ll see that second time round I made much better friends with Dothiepin.

You inevitably meet people whose opinion is that you’d be better off not taking anti-depressants at all; but really this is just stating the obvious. Most sufferers would agree – after all, it would imply they were no longer experiencing depression!  And you can be pretty sure that’s where every sufferer is trying to get to. Some folk just have an aversion to the thought of anyone being on medication, as if somehow it’s untrustworthy or evil. And then there’s another category of person who can accept that being wholly reliant on drugs to control diabetes, or blood pressure, or cholesterol, or any other well-understood physical ailment, is OK. Whereas a mental ailment such as depression (as we have seen, with a physical cause) ought not to need long term drug therapy. In the mind of the sufferer this has the effect of implying there is something intrinsically objectionable in having a malfunctioning limbic system. Again, this is another unfortunate example of the misguided ‘shame’ depression attracts. In all honesty this is not what a sufferer needs to hear, they can be spared these opinions until recovery.

These kinds of remarks are unfortunately damaging and destructive and only serve to isolate the sufferer even further. I won’t say these anti-medication individuals are all tree-huggers, but typically they haven’t the faintest idea what’s in anti-depressants or how they work. That being the case, it’s possible they are also uninformed about clinical depression itself – in which case access to this (or similar) book could be helpful. In the final analysis, even the “newer class” of drugs - SSRIs such as Prozac (Fluoxetine) - have been around since the late eighties, and tricyclics (such as Dothiepin) even longer, so they are well tested and proven.

Part 2 - the second time I took them - lifesavers

So, I now come back to my experiences of Dothiepin second time round. My earlier encounter had left me feeling very nervous about going back on it, but desperate times call for desperate measures, or so I thought. My greatest fear was a return of the constipation and I made the doctor aware of this in no uncertain terms. In light of this she also prescribed Lactulose – a rather gentle laxative that works by retaining water - and Movicol (in case of ‘emergencies’) – an industrial strength formulation that can give concrete a run for its dunny.

I started off on 75mg of Dothiepin, ramping up quickly to 125mg then 150mg over the course of a few weeks. This is fairly normal procedure. 75mg had barely been doing any good previously, and given my very distressed state the GP was keen to get to 150mg quickly. I was utterly paranoid that once I got above 75mg I was going to become ‘bunged up’ as I had before. This paranoia became semi-frantic when after five days, despite taking Lactulose, I still hadn’t been to the loo. However, I shouldn’t have worried. What I didn’t know then, but do now, is that Lactulose doesn’t work as a stimulant like many other laxatives (the kind that are good for practical jokes and warning off food thieves) but works by retaining moisture in the bowel (you have to drink a lot) and keeping things ‘gooey’. (I’m trying to avoid too much detail.)

Although I was carrying bottled water with me everywhere, I was pleased to find that none of the other most worrying side effects re-occurred, namely the confusion and loss of co-ordination. The pattern of drowsiness was more-or-less the same, though less intense, thus helpful and not hindering. A dry mouth, which is a very common side effect, was a small price to pay and encouraged the intake of plenty fluids. Any desire to crave carbohydrates was significantly offset by the depression itself and usual loss of appetite.

Following consultation with the psychiatrist my dosage was increased to 200mg, a figure that sounded very scary to begin with. However, I was assured by her that, although higher than my previous dosages, it was a perfectly respectable level and was not uncommon. So, I had to follow my own advice and put my trust in the medically qualified. As an aside, I learnt that the family GP will defer to the psychiatrist’s/specialist’s judgement and work according to their instructions, which are communicated by letter, but upon which the GP was happy to take me at my word. It also seems to be the case that in some instances the psychiatrist has authority to prescribe higher dosages than the GP.

The increase to 200mg went smoothly, although I wasn’t sure whether or not to increase my Lactulose consumption. Since I’d become comfortable (physically and mentally) with the way it worked I didn’t bother and mercifully didn’t suffer as a result. And I haven’t had to touch the Movicol. So, all in all, my toilet habits finally seemed to be under control.

It’s hard to underestimate how much of relief this was, because there’s nothing worse than the thought of being caught out (other than actually being caught out) on the bus or train, in the car, in town, at someone else’s house, at the cinema and so on. It then starts to become a mental block and affects your routine and behaviour. You start to panic about whether toilets and toilet paper are in sufficient supply when you are away from home. It demonstrates how the simple matter of ‘unruly’ bowels can have a fairly significant detrimental psychological and behavioural impact. It’s very common when depressed not to want to venture outside anyway, and this just adds to the burden.

As one worry subsided, another began to emerge. I was beginning to experience trouble urinating – feeling that I constantly needed to go, but then wasn’t fully able to. Perhaps under more light-hearted circumstances I would have been more objective about it; but in my depressive state I began to start wondering if I had prostate cancer. There are occasions where these kinds of thoughts would evoke outright panic but my reaction was strangely equivocal. On the one hand there was that predictable sense of dread, the ‘big C’ being something you never want to hear in the same breath as your own name. But on the other, a sort of resigned acceptance that life was, really, a bit too difficult and it would be somewhat of a relief to slip away quietly. And the mortgage would be paid off, leaving my wife financially secure. Shame I wouldn’t be there to enjoy it. Like a typical bloke, I just kept all this to myself.

I’m not sure how it came about, but some weeks later I was flicking through the ‘death warrant’ (the “patient information leaflet”) that came with my medication; I think I was probably comparing a few of them as part of my research. I noticed on one of them something I hadn’t seen before – “difficulty in passing urine.” So, somewhat perversely, I was extremely pleased to see this listed as a known side-effect! Having satisfied myself that this was the underlying cause of my problem I duly thought no more about it.

That remained the case until I mentioned it to my psychiatrist in a routine check up. She reacted immediately and decisively, recommending that I drop to 150mg over the course of the next few days. (This is achieved by alternating dosage for three or four days.) She said men were more prone to this than women and it was important to deal with it (presumably because if you cannot empty a full bladder it could distend and rupture.) I’m glad to report that lowering dose greatly improved the situation. I was also getting a bit lackadaisical with my Lactulose and missing doses here, there and everywhere, and eventually discovered that I didn’t really it need it any more. Thus, as promised by the ‘death warrant’, the side effects were gradually subsiding. After a shaky initial acquaintance, Dothiepin and I were going to get along on friendly terms.

When I look back on this journey with the medication, it follows a trail of initial ‘trauma’ through to contented serendipity. I have purposely portrayed it in this way, not because I want to discourage sufferers from taking medication, but because I want observers to see some of the additional ‘battles’ sufferers have to go through at a time when they are already at their lowest point. In fact my overall message is one of encouragement. In hindsight, during the initial stages of treatment I was at my lowest ebb and most irrational. Objectively interpreting the pros and cons of my medication was just not possible but non-the-less I tried. But at this early stage of the journey even the slightest ‘knock-back’ is enough to induce despair and throw you right off course; hence my whole ludicrous paranoia  regarding constipation. And it does seem ludicrous, because it’s all gone away; my body has adjusted. Even the very common dry mouth has been laid to rest, and only the night-time drowsiness remains. Ultimately, if someone was to offer me a box of tablets and the promise of a good night’s sleep in exchange for depression, I’d take it every time.

Other drugs for treating depression

[Source: Depressive illness - Dr. Tim Cantopher]

Tricyclics - first used 1950's. Still work well.

• amitriptyline (triptizol, lentizol)
• imipramine (Trofanil)
• dosulepin (prothiaden, dothiepin)
• doxepin (sinequan)
• clomipramine (anafranil)
• lofepramine (Gamanil)

Monoamine Oxidase Inhibitors (MAOIs). Not often used (strict dietary requirements)

• phenelzine (nardil)
• tranylcypromine (parnate)
• moclobemide (manerix)

Selective Seratonin Re-uptake Inhibitors (SSRIs). Newer. More-popular.

• fluoxetine (prozac)
• paroxetine (seroxat)
• sertraline (lustral)
• citalopram (cipramil)
• fluvoxamine (faverin)
• escitalporam (cipralex)

Newer Drugs - typically working on the noradrenaline system.

• venlafaxine (efexor)
• mirtazapine (zispin)
• reboxetine (edronax)
• flupentixol (fluanxol) - experiences of this will be in my book.
• duloxetine (cymbalta)

I hope this of help to you if you are trying to find out about dosulepin/dothiepin and its effects. Good luck.

addenda: an interesting discussion at work (which started off about the paranormal) threw up a link to www.nystagmus.co.uk - a visual problem which can cause many symptoms of the above... Did dothiepin induce this effect in me? Who knows - it's pure speculation, but you might be interested to read up on the topic... )

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