I was prescribed Sertraline (Zoloft) in 1998 when I had postnatal depression. I was told to take it for a year to 18 months. I went from deep depression/anxiety to euphoria in the space of about two weeks, I felt pretty damned fantastic, there was nothing I couldn’t handle. As time went on I continued to feel well but my emotions were dampened down, so I was functioning well, no depression, but no “joy” either. After a few months of feeling well I decided I didn’t want to be on Sertraline anymore, didn’t read the patient information leaflet or talk to a doctor, not that that would have helped anyway. I just stopped taking them. My head felt terrible, it began to feel water logged, if I turned my head there was a time lag between my eye balls catching up with the fact that my head had turned, so dizzy, gradually intense sadness would kick in, really really intense sadness and anxiety, oh the anxiety, pumping adrenaline and nerves shot to bits. I went back on the Sertraline.
The doctor told me to do the alternate day thing, alternate days for a fortnight,then every third day for a fortnight, then one tablet a week, I did this various times over the next few years to no avail. I tried a pill cutter and halving the tablet, it wouldn’t break down easily without crumbling so that was unsuccessful. Every time I tried something, I ended up in worse shape than the time before, it was all getting steadily worse. I tried meditation, healing, exercise, cognitive behavioural therapy, counselling, fish oil capsules, NOTHING touched it. I pressured my surgery to refer me to a psychiatrist for advice,but the psychiatrist had no clue and could only recommend switching to another drug. I did switch to Citalopram for a while, and Mirtzapine, I felt constant fatigue on Mirtzapine, and then back to Sertraline. Yet another psychiatrist recommended halving my dose of Sertraline and taking diazepam to mitigate the withdrawals, so replace one powerful drug with an even more powerful addictive drug.
This is my description of how withdrawal felt from my blog, I only recently found out that what was happening had a name,akathisia:

“5am and for about the 3rd night in a row I’ve barely slept, I can’t stop the adrenaline pumping round my body, my stomach is tightly knotted, I’ve barely been able to eat properly it makes me feel sick. I’m clammy, sweating and crying and P is trying to reassure me, but he has to go to work. I get up and drag myself through all the motions of the day and making sure boys get to school, I feel like the living dead, I make sure they get fed and make sure they and no one else is aware of what’s going on, I don’t hang around at the school gates. Oh I do kind of tell a few people I’m not really feeling right but I play it down.
The constant adrenaline is tormenting me on the inside and I can’t stop it.It’s been building up over a period of months and I’ve been fighting and fighting the feelings but it seems to have reached a peak of exquisite torture.It’s like being at the top of a roller coaster that never stops. Someone else mentioned birdsong, and it was a funny thing, the torture was worse in the mornings and over the summer months while it was slowly building, birdsong in the morning outside the window had become a kind of torture as well. I had to go to work only 2 days a week and God only knows how I managed it. I had taken
my last Sertraline tablet months ago, and come off it as per the doctors instructions, and now my depression/anxiety was back tenfold to punish me for daring to presume I could stop taking it. I must be wired up wrong, no one else feels like this do they? What is wrong with me? Maybe I really am insane, maybe I just can’t cope with life without my tablets, how come everyone else can cope with life, and I can’t? There must be something fundamentally wrong with me. By now the Orwell Bridge was beginning to look a bit attractive and I just wanted to escape the adrenaline surges torturing me, my nerves were in shreds”.
This was 2003,at the end of 2003 I gave in and went back on the sertraline.

In 2006 I attempted another withdrawal, but at the same time we found ourselves going through a stressful life event, I tried to tough it out but ended up back on the Sertraline again.
So here I was, several years later and no further forward, and not for wont of trying! Everytime I went in a book shop or library I would try and find anything I could about antidepressants and depression, but nothing really enlightened me. I rummaged around on the internet but couldn’t find the answers. Until one day, I was browsing around Waterstones, and “Coming off Antidepressants” by Joseph Glenmullen jumped out at me, I read it avidly, and discovered TAPERING!!! But, all the examples in the book referred to liquid Seroxat or Prozac, I was really upset to find Sertraline was not available in liquid form. Armed with my new information about the simple concept of tapering, further digging led me to Dr Healy’s protocol of switching to the equivalent dose of liquid Prozac. These two pieces of information became my secret hope, I latched onto them. I decided to take a leap of faith and switch to liquid Prozac. At the beginning of 2007 I marked up my calendar with a schedule, I was going to go down from 5ml to 4.90ml the first week, 4.80ml the next week and so on, as my sons would say “epic fail”. By about mid February the nightmare was unfolding again and I had to give in and go back to the top of my Prozac dose, I was devastated.
Still I hadn’t given up hope, P was sympathetic but he couldn’t understand why I didn’t just give it up and accept I “needed” the drugs like a diabetic needs insulin. After lots more research, and P having interesting and enlightening conversations with a client who was a pharmacist about my problem, I started my taper again in May 2008, this time much much slower and here I am four years later down to 1ml liquid Prozac and still sucessfully tapering. It has needed a lot of self-discipline. I kept this blog/diary of my progress; I’ve been amazed to meet a few others who have been tapering longer than me. Nowadays my withdrawals are fairly benign, but I still feel a bit scarred from the experience,the akathisia has left me still feeling like my nerves are quite raw and very close to the surface but I can live with that now.
There is a huge assumption that these drugs are benign and harmless, they are not; they can cause extreme agitation and internal torture. They are dished out like smarties and people left to deal with the results. Starting them is like playing a game of Russian Roulette, you might be a lucky one who can take them and come off them with ease, or you might not. My understanding was that they were meant to be taken for only a year or so after you feel “well” but many many people are stuck on them for years or forever, I know many people who’ve given up hope of coming off SSRI’s and I hear many people say “oh I’ll be on these the rest of my life”. There is NO support or advice in place through doctors or psychiatrists on how to taper safely off the drugs.....if anyone does find any help in the UK, please let me know, although it’s a bit too late for me now as I’ve almost done it myself, but I know a lot of other people who might like to know!

Record of my Experiences with Lustral



A few years ago after I had James, I had a severe post natal depression, at the time I was in a very black and frightening place, but I knew it was THAT bad I had to do something about it. When I went to the doctor he assessed me and prescribed antidepressant medication, Lustral, at the time I was very scared about taking it and scared of how I was feeling, scared of getting addicted to something, doctor reassured me that the new SSRI medications are very safe and totally not addictive and at the same time I knew I had to do something constructive because I had two young children to look after and a husband working his socks off who couldn't take time off.

Anyway, long story short, I took the Lustral, and a few weeks later I felt, almost overnight, a massive shift in my emotional state, the sun shone, in fact I was feeling pretty good, pretty high, life was good. A few months later I decided I was well again, and just stopped the Lustral, cold turkey, a few weeks later I crashed spectacularly, I felt very dizzy and the depression/anxiety was back worse than before, shocked and bewildered I went back on the Lustral.

The theory goes, that you take Lustral, or prozac or whatever your physchiatric drug of choice is, for about a year to 18 months from the time you feel well again then you come off it. Anyways, after being well for a long while again I went to the doctors to come off the Lustral, which he agreed, the way I was told to come off was take a tablet alternate days for a fortnight, then every third day for a fortnight or so, then once or twice a week until your off. I did this as instructed, felt very dizzy, my head was full of cotton wool and so spaced out but persevered, then a short while after I’d come off the drug “bang” I’d be hit by massive depression/anxiety, go back to the doctors, we’d come to the conclusion I’d relapsed and back on the Lustral to feel well again. This happened several times over the course of the last few years and I always got well again on the Lustral. Fast forward to January last year, a book jumped out at me in Waterstones called “Coming off Antidepressant Medication”, bought it, and it was a shocking revelation. It explained that the way to come off antidepressant medication was to “taper” it, and NOT the alternate day method, and it explained about “withdrawals”, which I’d had no idea about, and I’m certain my doctor knew nothing about either, in fact I gave him the book to read, withdrawals come in two types, the physical (bear with me please!) which is the head shocks, spaced out dizziness and/or flu like symptoms, and physchiatric withdrawals which can be depression, anxiety, violence, suicidality and loads of other things. The dirty little secret is that the phsychiatric withdrawals mimic or are worse than the original disorder for which you are put on the medication for, and which leads people into a catch 22 situation, you come off, probably too fast and by the alternate day method, get the withdrawals, think you’ve “relapsed” and are a mental defective and go back on the tablets and feel well again.The other dirty little secret is that any alteration in dose up or down can lead to serious problems, and in the US they have a lot of SSRI induced violence and suicide because they dish them out far more than in this country, and in this country they dish them out like smarties because mental health services are underfunded. This lead me onto loads of interesting research and what I don’t know about SSRI’s (Selective Serotonin Reuptake Inhibitors - prozac family) you could write on the back of a stamp. Anyway, I decided to try and taper Lustral but it’s only available in 50mg and you can only cut it once in half to get 25mg before it crumbles, so I tried it anyway but failed, so then I went back to doctor and switched to prozac because it has a long half life (half life is the length of time an SSRI takes to wash out of the body, SSRI’s with a short half life like Lustral and Seroxat are harder to withdraw from because they wash out fast and you get hit by withdrawals fast, whereas prozac takes days to wash out and the theory is that it’s easier to withdraw from), also, prozac is available in the UK in liquid form so you can taper it slower with a syringe. Anyway, Jan 08 I switched to prozac liquid and armed with my syringe I decided to withdraw at the rate of 5% a week, of course I now know this was WAY too fast, I was getting the usual dizzzyness and spaced out feeling but I could cope with that, but after three weeks in and a 10% down I was hit by a massive massive wall of depression, I could feel it washing over me, I woke up in the mornings feeling like death warmed up not wanting to face the day, couldn’t eat (HAVE to be ill for ME not to eat and weight literally dropped off me) I thought about toughing it out but after three days I know Peter was really worried and I knew if I carried on I’d be jumping off the orwell bridge or doing something equally silly, I felt that ill and it was going to start impacting on everyone around me, I felt like a heroin addict going cold turkey. Luckily this fell in half term week when I was off work and in fact the day of a colleagues leaving do I was in the thick of it. The fact that when you start taking the tablets again you feel well again indicates a withdrawal/addiction problem but medical people won’t ever call it addiction, they call it “antidepressant discontinuation syndrome”. Anyway, I now know that there is a huge spectrum of experiences with SSRI’s from people who take it successfully and come off with no problems to the other end of the spectrum to people like me and worse, and I’ve been advised to take it much slower, reduce by 1/20th or 5% a month or so, make a tiny reduction, stabilize for a few weeks, feel well, before you make the next tiny drop, it’s like landing an aircraft in a hurricane!! One of Peters clients is a pharmacist which has been really handy and Peter has picked his brain, I changed my doctor and she knows I’m determined, intelligent, done my homework and she can’t fob me off, and she has referred me to the clinics mental health nurse, who rang me, but to be honest I didn't really feel he understood. I’ve found a couple of really good support groups on the net, when you try and fail you can also get VERY phobic which can hold you in the antidepressant catch 22 as well, it’s a complete head fuck, also, what happened to me in that Feb half term week shook me up badly and has taken me some time getting over, I’ve felt like I want to die but of course I would never do it.

Oh the other thing is, for the past couple of years I keep getting this recurring dream, sometimes very frequently, it’s always about packing up moving house or packing up at the end of a holiday, and for a long time this has puzzled me, and recently I heard a programme on the radio about recurring dreams and their meanings and the fact that it’s your subconscious or a higher power of spirit trying to guide you or tell you something and you have to think about the emotions in the dream to get the meaning, and the penny dropped, it was about coming off the medication.

4 comments:

Anonymous said...

I'm sorry your experience was so bad. I'm on Lustral and have been for a good few months. I know all the risks (I read the booklet) and my doctor has told me everything I need to know. The medication is not addictive. Addiction is where more and more needs to be taken for the same effects. The body adjusts to Lustral, the brain, gut and adrenal glands adjust to it, and that is why it takes so long to come off sometimes. It took three weeks for any effect to be felt with me. And even then my dose had to be raised to 150mg. This was done steadily and safely. My doctor made it very very clear that this was not a miracle cure; it was to take the edge off. It would not fix the problem. It would help me cope. I understood that. I'm sorry your experience was so bad but I can honestly say that Lustral saved my life, and my education. I was suicidal when I went to see my doctor. I think that perhaps you expected too much from the drug. It is not a cure; it is an aid. I wish you all the best in your coming off the drug and am so sorry that the past ten years have been so tough. Lustral, while very effective drug, was just completely wrong for you.

SMH said...

Thank you for taking the time to leave your comment, sounds like your surgery took a lot more trouble than mine.
Yes you're right it's not addictive as in craving more and more to get the same result, although I've heard that it does poop out for some people and they end up on ever higher doses until they reach the max. It just felt like I was being held hostage by Lustral.
I'm glad it's worked out for you.

Ness said...

Hi. I came across your blog while researching Lustral for a friend who has recently been prescribed it. I have myself had a long battle with prescription drugs, opiates for me, due to undergoing many many surgeries in my life. Just to clarify, if you suffer withdrawal symptoms after discontinuing a narcotic, it is because you are physically addicted to that drug (mental addiction, or dependence, usually does not manifest in physical withdrawal symptoms). Requiring additional dosage to achive the same effect is called tolerance, nothing to do with addiction. It's why an experienced drinker can drink more than a t-totaller.

Anyway I have become rather informed, and extremely passionate, about the side effects, addictive qualities and dangers of a large number of both legal, illegal and prescription drugs.

Lustral was not a name I had heard before however I instantly recognised the name Zoloft. Having read your harrowing (and all too familiar) story I have sent a link to my friend (and his wife) advising them both to read this blog and reconsider trusting their GPs questionable motivations and, as is the done thing in medicine these days, lacklustre attempt at treating a serious problem...without addictive and toxic drugs.

SM H said...

Thank you for your comment Ness, I almost forgot I had this blog as I wound it up a year ago LOL I'm sorry for your troubles and I can sympathise, yes if this blog prevents one person going through the same as me it will be worth while, I never have been able to get off Lustral/Zoloft, I was so ill last year I had to reinstate, for me Lustral has been a double edged sword, on the one hand it has kept me stable, but I'm aware that emotionally I am completely numb, and I can't see myself ever being able to stop taking it. I would always advise anyone to go explore all alternatives first before going down the drug route as a last resort.